Nikko

Quick notes

2012-02-08T23:35:00.000-06:00

2/7 Aide notes - Nikko got very upset during one of the 100 days activities [it was the 100th day of school, being celebrated school-wide]. Class was shown containers of different things and they had to pick which container had 100. One of the containers held M&Ms. Nikko very much wanted to eat the M&Ms and had a hard time understanding they were not for eating, just for looking. It took a while, but he eventually calmed down. However, we weren't able to do all the discrete trials due to the shortened time.

2/8 OT notes - Heavy work activities, then worked on fine motor control at table. As a reward - pedalled bicycle back to Mr. Stoll's class.

Guilt

2012-02-07T00:42:00.002-06:00

My niece was the lead role of Dorothy in her middle school production of The Wizard of Oz. I planned to take Ronin and Audrey, but knew that Nikko would not be able to sit still or be quiet during a two-hour performance so I opted to leave him home with his daddy. Nikko would probably see the crowds of people and tell me immediately that it was "time to go home", perhaps squeal or yell, or even struggle to leave. I didn't want to ruin the experience for other families. Besides, he'd get to spend some 1:1 time with his dad. But as the hour came closer to leave the house with my two youngest, I was filled with intense guilt. Suddenly I wanted to bring Nikko (I really couldn't, I didn't have another ticket for him) because it didn't feel right to go somewhere without all my kids together. I also started to imagine the good-bye scene getting ugly. I knew it would be great for Ronin and Audrey to experience seeing a play, but it bummed me out that Nikko could not enjoy it this time around.

Nikko got upset when he saw us getting ready to leave, watching his siblings putting on their shoes. He grabbed his shoes and told me "shoes!" but I told him that I'd be right back, and I'd see him later. He didn't understand where we were going, and why he couldn't come along. Denis later reported that it took a while for him to calm down, but he took him out to get chicken wings and he was compliant. I really wonder how Nikko felt, though. At the play, when my mom asked me where Nikko was, I started to explain that he was home with Denis, and I got choked up with tears in my eyes when I told her that Nikko probably wouldn't be able to sit still and would make noise. My guilt felt so huge. I know it was the right thing to do, but as a mom I felt like I let Nikko and myself down by not including him. Was it fair? Shouldn't Nikko be exposed to things that other neurotypical kids experienced, whether or not he can actually handle them at the time? Where does one draw the line as to what is fair and what is not?

First Potty, then Swim Class

2012-02-03T00:24:00.000-06:00

I wrote a note to Mrs. S this morning, warning her that Nikko did not have a successful bowel movement yesterday, and I hoped it didn't affect his day today. I really hate being on poop watch. His morning wasn't as eventful as his afternoon according to his daily report:
(afternoon) Opening - Days of school - Nikko counted by 10's out loud.

Centers- Art- worked independently for the most part.
DT- Started new set of sight words today.
Hearing test - world respond to tone, but would not wear headphones for official test.

Special Activity - Gym - Scarecrow tag - Was engaged.
Paddles - tried hitting ball over net
Danced - did move along to music

When he got home and finished his snack, I had to hurry and get him ready for his swim class. When I took him to the bathroom to change into his swim diaper, I noticed that he was really ready to have a bowel movement but needed some help (sorry for the TMI). I put him on the toilet and had to use a suppository, but then he was able to push out a long obstruction. Thank goodness, really. I didn't want him to be late for swim class, which he loves, so I am thankful that he was somewhat cooperative instead of resistant, like last night.

Daily progress

2012-02-02T00:20:00.000-06:00

Last Friday we had an IEP meeting to go over Nikko's progress thus far. It wasn't meant to rewrite any goals. I got a lot of positive feedback regarding Nikko and school, as well as positive feedback about his detail-oriented aide. There were several teachers and individuals present, including the school psychologist and OT. They informed me that with Nikko's 3-year evaluation coming up, they wanted to conduct some tests to get a baseline of his knowledge and skills. They also warned me that he may not test well since he has big problems with distractability, but they assured me that they would find tests appropriate to his capabilities. I'll have to remind myself to get an update on these test results.

As for today, Nikko had a really good one.
OT - Nice working today. Participated fully in warm-up routine. Worked on 1st and last name, and letter game. Did iPad at end as a reward.
From his daily notes via Mrs. S - Re: Stations (Reading) - Resistant to doing letter sounds with Mr. Stoll. Called me "Bad Mrs. S" because I was keeping him from leaving table. (I LOVE THAT!)
In the afternoon session - Snack time - Sat with a friend who said Nikko was "The best friend I've ever had!" (<3 <3 <3)
Notes - Nikko keeps singing "Summertime, summertime." Is this a song he learned? - I had to ask Ronin about this, and Nikko is indeed singing a song he learned from a cartoon called Little Bill, which is about a young Bill Cosby as a boy. Also in his papers today was a picture about Meanies. He drew a picture of meanies, and it does look like a figure with eyes and a nose. The word WOW! was written at the top of the picture.
Discrete Trial Report - (With Mrs. M, the psychologist. Apparently, Mrs. S does Nikko's trials daily, except for Wednesday when he does it with Mrs. M. They do this so that he can learn to generalize with other people, meaning that he will be able to count with people other than Mrs. S.) Sight Words - mastered first 10 words; ID Body Parts - mastered first set of body parts; Cut with Scissors - mastered cutting. In the afternoon trials, he continued to do well with writing his name, counting objects, ID'ing letters with sound, and writing upper case. However, the notes say he started giggling in the middle of trials. Oh well.

Language gains

2012-01-27T00:37:00.002-06:00

Nikko has been making some expressive language gains at home.

When he has trouble building something in the living room, he'll come seek me out and say, "Do you need help?" I'll then tell him, "Say 'I need help.'" And then Nikko will repeat, "I need help" while ushering me toward the living room. When I get there, I have to figure out which train track is out of place or what is broken that needs fixing.

I have to keep an eagle eye on Nikko regarding bathroom visits. If I don't tell him to go pee pee potty, then he'll resort to doing it in his pull-up. I often say to Nikko, "Nikko! Let's go pee pee potty." and then I'll pair the statement with the sign language action of a closed fist with thumb between pointer and middle finger, waving it back and forth (potty). If he doesn't have to go, he'll say, "No pee pee potty." If he has to go, he'll say, "Yes pee pee potty." This is actually a huge step forward regarding potty awareness, so I am grateful that he has been able to express this within the last two weeks. The only caveat is that visits to the bathroom are 90% prompted. He rarely tells me of his own accord that he needs to go potty. I have to ask him. This makes me ask Ronin and Audrey if they need to go to the bathroom. And so I am chirping every thirty minutes, "Do you need to go to the bathroom? Nikko! Let's go pee pee potty!" throughout the entire day.

When we are getting ready to leave the house, Nikko puts on his winter coat, comes to me and says, "Zip, please" while holding the edges of his zipper.

I am grateful for all these gains!

Increasing requests/Chuck E. Cheese

2012-01-22T18:12:00.000-06:00

I was sitting on a small ottoman that was next to our couch but clearly not in its regular spot. Nikko came up behind me, started pushing on my back and said, "Stand up! Stand up!" He wanted me to move, so I did. Nikko doesn't usually command anything via action verb; instead, he requests via noun e.g. "Apple juice" or "Striped cookie."

We've also been watching the Your Baby Can Read DVD series with the kids, as I mentioned before, and now Nikko requests to watch the "Homework DVD." He is doing a good job of retaining what he sees.

Finally, today (Sunday) we took the kids to Chuck E. Cheese's for two separate birthday parties. Nikko's classmate Matthew invited him, and I had a chance to talk to the mom. She sometimes volunteers in their Kindergarten class so she knew about Nikko's speech delays, and Matthew supposedly talks about Nikko and said that he uses sign language. She was so kind that she invited Nikko to come over for a playdate anytime. I thought that was incredibly generous of this mom. I was happy to see a few of Nikko's Kindergarten classmates walk by Nikko and say hello, even if he didn't say hello back. In particular I noticed a friendly girl named Corinne, Matthew himself, a friendly kid named Jack, and a boy Nathan who didn't mind that Nikko sat next to him at the table. Nikko didn't really care for any of the video games. Instead, he enjoyed climbing up an indoor jungle gym and scurrying through some tunnels secured to the ceiling. It truly reminded me of a hamster run. I stood near the end of a slide to make sure he didn't get caught in the tunnels and freak out. Nikko actually fared really well and checked to make sure I was still standing at the same spot whenever he resurfaced.

A note to the aide

2012-01-20T00:27:00.002-06:00

I'm copying a note I wrote to Nikko's aide regarding the progress of his discrete trials as of late:
(for those who don't know what discrete trials are, it's an ABA-based daily activity where Nikko sits 1:1 with his aide or another teacher and they do activities with him that are geared toward lessons. Each time he attempts an answer, it is recorded out of a series of 10 trials.)

COUNTING OBJECTS - you mentioned a regression in counting, that he rushes. What objects is he counting? Are they pictures of objects or are they actual physical objects? Could you try closing out the trial with him putting the completed picture or the last object in a container, signifying the end of the task? Is there a specific number of objects he'll count up to, and then lose focus? Could he be rewarded (verbally?) for completing a counting sequence before continuing to the next?

BODY PARTS - according to the reports, Nikko doesn't seem to be making progress here. Can we change up the trial with different visuals? I don't know how the trial is done on him, but perhaps he's not understanding what he can't see. Do you use a mirror with him? Are you able to touch him directly on the arm (or head or shoulder) when identifying the body part? Can you put it to a sing-song game or tune?

ID LOWER CASE W/SOUND - is it possible that Nikko doesn't understand that "N" and "n" are the same thing? When I ask him to write word, for example FAN, he will write in all uppercases. Often if he really doesn't know an answer, instead of saying "I don't know," he will not answer at all. [This is something that Karen, his private speech therapist, pointed out to me.]

and finally, re: SWIM CLASS - Nikko was excited to see the Nikko Swim picture card on our Daily Schedule at home, because he loves the water. "We're going to swim class," is what I told him. It must have stuck with him the rest of the day [which is why today he kept saying "going to swim class" instead of doing some of the trials]. Nikko started another session of swim classes on Thursdays after school, for the next two months or so.

Unfocused today

2012-01-17T22:49:00.000-06:00

Nikko had a good day back at school today, but the notes tell me that he was very unfocused during his discrete trials. We had Monday off from school due to Martin Luther King Day so I wonder if he was antsy due to that. According to today's sheet, he did 10/10 correctly with his sight words. That makes me wonder if he is getting better at processing the ones they expose him to at school, or if the Your Baby Can Read program that we're using at home with all the kids is rubbing off as well.

Sight words

2012-01-12T23:26:00.000-06:00

We have a book of sight words that we are using to teach Ronin and Audrey how to read. This evening, Denis was reading from the book before bedtime and I decided to usher Nikko away from the iPod Touch into the living room to join everyone. While Ronin was being antsy and Audrey was being bossy for her turn, I sat next to a tired Nikko and heard him quietly say the word on the page: Gorilla. I did a double-take and interrupted Denis so that we could listen to Nikko say it again. When I pointed to the next word, Nikko said, "Tiger." Denis and I looked at each other incredulously and gave out enthusiastic high-fives, to each other as well as to the kids. We were not expecting Nikko to READ sight words alongside his siblings! The last word I could get him to read was Dog(s), and then I could see he was tuckering out. I was brimming with pride, and very intent on working on more words in the near future.

Today a snowstorm hit the midwest and will continue throughout the evening. I took Ronin and Audrey out to shovel and play in the snow before Nikko came home. The kids were outside for a good hour before the bus came, and I wondered if they could sustain playing outside further. Of course, they were ecstatic about the snow and wanted Nikko to come home to play with them. After getting Nikko off the bus, we rushed inside to change into his boots and snowpants. He easily transitioned outdoors and loved to lay on his back to make snow angels. Nikko also liked packing the snow at the bottom of the backyard slide and laying on it. When it was time to go inside, he asked me, "Go swimming?" I think he wanted to continue swimming in the snow. I said time to go inside, and he didn't protest. Later on, while helping him go to the bathroom, he looked at me and asked again, "Go swimming?" This time he moved his arms in swimmers' strokes. I laughed, but told him all finished, tomorrow.

Manners

2012-01-09T08:13:00.003-06:00

After every meal at the kids' table, I tell them to ask to be excused and to bring their plates to the kitchen counter. They're still short so I have to watch them walk over and not over-tilt their plates onto the counter. Ronin and Audrey often ask to be excused while they are in mid-flight toward the living room. Other times they forget entirely and I am shouting at them to ask for their release.

I never required this behavior of Nikko. At least not right away. I showed him how to bring his plate to the counter and many times he'd be distracted and race off. His version of wanting to leave the table was either to leave, or to say, "All finished."

On one of the Signing Time DVDs they teach you how to sign "May I be excused?" Nikko used to laugh when seeing/hearing that phrase. This morning he used it very appropriately, as I have seen glimpses of this use over the past month.

He looked up at me from his listening headphones (music therapy every morning) and said, "All finished." I came over to remove his headphones. He said, "May I be excused?" and took his plate to the counter. I said he could go and he happily trotted off. I was beaming. Looked like normal behavior to me. ;)

Two separate words

2012-01-08T00:35:00.002-06:00

At dinnertime on Thursday, Nikko came up to me with an empty cup.

"What does Nikko want?" I asked.

He thrust his cup toward me with a sidelong glance. I repeated my question and he didn't retract his arm.

"What does Nikko want? What IS that?" I asked, pointing to his cup.

Nikko signed Apple with his fist to his cheek and said, "Apple."

He signed Juice with his hand in a C mimicking drinking and said, "Juice."

"Oh," I exclaimed, "You want apple juice! No problem."

He ran away and I gave him a refill. I was really proud that he was able to sign in conjunction with speaking, and put two words together. I thought he would glob them together as "applejuice" but clearly he understands that they are two separate words.

Again, it's the little things. Awesome.

Mastered X

2012-01-04T23:52:00.003-06:00

2nd day back at school for Nikko. He had a cough but no fever or drippy nose, so I wonder if this is going to develop into something. I really hope not!

OT - Did well writing name! Working on refining the "K". Gave Mrs. S sensory diet ideas in a.m. before break to do first thing as winter time lends itself to more sedentary activities. Also worked on IPAD - Doodle Buddy & Touch Sight Words.

According to his discrete trials sheet, he has mastered identifying lower case letters, identifying #s 11-20 and writing his name (with modifications- highlighted letters). I'll have to ask them what the next goals are, or if they are following a goal sheet, or if they are tailoring it to his IEP. I'm happy to see his progress. It also seems he does better when his trials are in the morning vs. the afternoon, when his attention starts to wane.

Observation

2012-01-03T21:50:00.000-06:00

Yesterday, Nikko looked up at the daily schedule on the wall that I forgot to change from New Year's Day. We went to my sister's house for lunch and my in-law's house for dinner.

He looked up at me and said, "Tita Atz house, all done?" (That's my sister's house)

"Yes, Nikko, you're right."

"Lola's house, all done?"

"Yes, Nikko, you're right!"

Pretty cool.

Under the wire

2011-12-31T01:39:00.000-06:00

Here we are, on the verge of the new year, and I wanted to squeak one blog post to make up for the lag.

Nikko has been doing ok in school. He has a great aide. He doesn't NOT like going. There were a few sick days, but overall I think Nikko enjoys getting on the bus and being in a different environment during the day. I didn't know if he'd last a full day at school, but aside from some instances of slight afternoon crankiness I think he is able to handle it. I worried about lunchtime but his special ed class eats in the special ed room instead of the big lunchroom. I wondered if I should balk at that idea but really it's fine with me that he eats among peers.

Nikko can write his name. THAT is amazing. It's an IEP goal that the OT has been working hard on helping him achieve. It's not perfect, especially the K's, but on command he is able to write those letters and it warms my heart. In fact, Nikko is able to write other letters as well, just not all at once. Every day after Nikko walks into the house and has snack, I sit him down and we do his homework. This involves writing a letter or a number five times. There are other commands such as putting the appropriate letter in the beginning or the end of the word, and I'm pretty sure Nikko doesn't understand that concept, but we do the best we can. He is able to count by rote, and at home he can go as high as 30. Nikko does discrete trials twice a day at school and I get to read his progress on the sheets sent home daily. The aide does a great job of documenting. I have to get my butt into gear and file away the past month's sheets, that's for sure. Alas, paper is not a stranger in this house.

Nikko still goes to private OT and ST on Friday mornings. Today the OT said that he has improved in terms of tolerance. Every time they do an activity he is learning to try something instead of just blow up. He's also been saying NO and YES more frequently at home when I ask him to go to the bathroom or if he has to choose between two things. THAT is amazing. I don't get an answer all the time, but many times he is able to vocalize a NO. I had the opportunity to sit in on a speech session and watching him make choices, say letters and put them in the appropriate slots, and sustain attention during tasks was very rewarding to me. I almost wish I wasn't observing because I didn't want to waste his session with my presence, as was evidenced in the beginning of that session where he refused to sit in an exercise saucer. The ST spent a considerable amount of time negotiating his tolerance, and she eventually got him to at least touch the center of the saucer instead of sit in it.

I think it's highly important for Nikko to be in these private sessions, especially because his ST BELIEVES in him. She never gives up on Nikko. She sees a ton of potential in him and works hard to coax it out of him. I find her work more encouraging than the feedback I got during his parent-teacher conference, unfortunately. While he has some very committed folks on his school team, I am not entirely confident that some of them believe in Nikko's abilities. One example is that of the school speech therapist. She warned me that Nikko's speech goals in his IEP are extremely high, and she didn't want me to be disappointed come IEP review time if his goals weren't met. When I asked her what she was doing to help him meet his goals, she gave me a non-answer of "Well, we're doing the best we can and we'll keep trying." Not a lot of confidence there.

Despite my reservations, I am giving the school a chance to help Nikko. I am really grateful that Mrs. I was reassigned to be Nikko's school OT again, because she worked with him last year and is able to gently push Nikko forward. The fact that he can write his name is proof of her hard work, in my opinion. Nikko's IEP meeting is at the end of January. I will be spending the weeks beforehand pouring over his discrete trials and matching them up to his current goals.

Elsewhere, Nikko still has night wakings. He is put to bed between 8:30-8:45pm with melatonin. If he's tired, it works like a charm. If he's not quite tired, it may take a little bit longer for him to hit slumber in a darkened room. I am perched at the side of his bed singing him to sleep, by the way. Once he falls asleep, I get at least 3-4 hours of quiet time until I am on my guard for a night waking. Sometimes it happens before I hit the hay; sometimes it happens after. He's been on winter break for two weeks and his potty training has gone somewhat south. I hope that once school starts again, he'll be back on schedule with wanting to pee in the toilet instead of in his pull-up. Grrrr.

Well, gotta get some sleep. Happy New Year! I want to be more consistent with blogging in 2012, so let me get on it!

2011-10-21T01:03:00.001-05:00

Nikko still seems to like going to school. I'm still wary about his progress, and will continue to be that way until the parent-teacher conference in November (think flashback to last year, when his deteriorating progress was unveiled at the meeting). I've been kept in the loop with very detailed daily reports from Mandy, and that eases some fears. Two days ago I started getting Discrete Trial Daily Reports, plus the ABA binder came back home. The timing was perfect, because I was just beginning to wonder if they had begun Discrete Trials at school yet. This is supposed to be the ABA school-version that Nikko needs. So it took over a month to implement... OK, I'll let that go since his sped teacher is fairly new. I really hope to see progress, after they make their abilities assessments.

Four days a week, Nikko has homework from his regular K class. It is writing letters. He HATES to write. After his snack at home, I sit and do his homework. For the past month I have been trying to be cheerful while assisting him, mostly hand-over-hand, to hold a crayon and write 5 repetitions of a letter. He doesn't put much force into holding that crayon. And many days he'll start to squeal in protest, so much that I just want to be finished with it. But today I saw something interesting. His homework was to write the lowercase form of the letters from a to t. I looked at the blank lines and decided to help Nikko by dotting the outline of each letter, so he'd just have to trace it. I was pretty sure that if I told Nikko to start drawing a lowercase "a", he couldn't do it. I gave Nikko a crayon, stood behind his chair as usual, and told him it was homework time, that he had to draw letters. I lightly held my hand over his, but let him apply the pressure as he traced each letter. And he did them all. Except for the m and n, which he was getting careless about, but honestly he made purposeful hand strokes with the crayon over each letter. That showed me he was cognizant about the task, and could complete it with a little help (dotting the outlines of the letters). Good boy.

The bad part about school, lately, is the attention span. This is going to be an ongoing problem for him. Keeping him interested in non-preferred activities. What works is the First/Then technique, and then reinforcing him with things that he really likes (cars, trains, figurines). I'm going to have to remind his sped teacher about that again.

We had a dinner playdate yesterday with three other kids close in age as mine, at their house (I'm friends with the mom). Nikko was clingy to me in the beginning and I really had to push him off to get interested in playing with the multitude of tracks and trains. The girls played with each other nicely, and Ronin was content with the Cars 2 toys. Nikko got used to running a GeoTrax train over some bridges, but didn't seek out company, nor did he try to talk to the kids around him. Nikko was, of course, in his own world. The one thing that got him moving around was when the boys took some foam swords and ran around the house. Nikko likes to "play" chase with Ronin and Audrey around our house as well, so I encouraged him to go chase his friends [with a sword. Oy vay!].

During dinner, while everyone was eating mac cheese (except Ronin), the girl said to me, "Does he talk?" She pointed to Nikko.

"No, not really," I replied.

"Why?"

I said, "Nikko has a hard time learning to talk. He's not as good as it as you guys are. But he can learn and get better at it if you guys keep talking to him." I was starting to explain how his brain was wired differently, but that explanation was going to get lost on them so I left it at that.

So there it is again in a nutshell. Attention span, and expressive language. Help, please.

Mini catch-up

2011-09-16T00:02:00.003-05:00

Oh MY. Has it really been so long since I've written an entry? SO very sorry. I guess I just got busy with juggling the kids' schedules. Let's update, shall we?My biggest fear going into the fall was the communication component between parents and teachers, especially regarding the extended day program. I can't say the beginning wasn't rough regarding communication. There wasn't an immediate, formal introduction of the special ed teacher to the parents. Instead, he took some time to acclimate and then put out a letter at the end of the first week of school. Meanwhile, I took the opportunity to communicate via email with the teacher and ask questions that I needed answered. My latest question was about the November parent-teacher conferences of which I am not formally scheduled to meet with the sped teacher. He said he'll get back to me with more direction on that. Nikko's schedule is as follows:8:55a Wait for bus pick-up9:20a School begins4:15p Nikko's bus drops him off across the street from the house.Simple, right? He's gone all day. He has the extended support program from 9:20 - 11:50, has lunch and recess, and then continues with the regular Kindergarten class from 1:20-3:50. The best part is that Nikko has an aide. She is shared in the morning with the ESP group, but in the afternoon Nikko has a 1:1. Her name is Mandy but we call her Mrs. S. I find that communicating through her is key to staying on top of Nikko's progress. She has been really detailed about Nikko's day, especially his eating habits, and I am eternally grateful. Nikko seems to be doing ok overall, but his attention span and focus are challenged in the afternoon. I figured this might happen. It's only been a few weeks so I want to be more supported in any observations. I make Nikko do "homework" right after he finishes his snack when he comes home in the afternoon. For some reason I really just want to get it out of the way. And feeding the boy at lunchtime is challenging in of itself. I pack him a lunch Monday through Thursday, and have to include two fruits or veggies for his morning and afternoon snack. Coming from a boy who'd rather inhale Pirate Booty or is happy with his goldfish crackers, it's really HARD to get him to eat stuff. I also really, really hope that the school is working on his IEP goals. I just got a notice today that the OT is switching for his class, that he'll work with Mrs. I. Again. YEA!!

Sans ABA / The Dental Visit

2011-08-23T00:20:00.003-05:00

We finished with private ABA last Tuesday. After another session where he wasn't focused and seemed to be consciously deciding NOT to do what Rebecca was asking of him, I told her that we were going to take a break from ABA due to the school year starting up again. With Nikko going full days, plus a double dose of OT and ST on Friday mornings, we need to see how he will be able to handle the added hours. The school should be providing discrete trials in some form as well, thus reducing ABA hours. We'll see how it goes, and then revisit the idea of ABA in the winter.

On Thursday I took the brood to see the Dentist for the first time. We found this pediatric dentistry practice through Jenna, whose mom is a receptionist there. Kids Plus Pediatric Dentistry is the place and it's really kid-friendly. The staff was excellent and familiar with special needs kiddos. I had to have Nikko in my lap facing me, then we bent him back so his head was resting in the lap of the hygienist/dentist. Jenna's mom was so terrific that she put on the movie UP, which played on all the TVs in the place. That movie helped calm Nikko a little bit, who was thrashing and crying and wailing all in his efforts to get away from me. Thank goodness I have a little more strength to restrain him! The dentist didn't come across any cavities, but she also gave us a disposable flosser so that I might try to floss Nikko's teeth and put some spacing between them. Many stickers later, all my kids came out as happy campers even though the trip was only for Nikko.

Nikko starts school officially on Thursday. On Wednesday is the Garden Walk "Open House" where I have a list of questions growing for the regular K teacher along with the SN teacher, whoever that may be. I am in denial, still!

The Great Wolf Lodge (aka Wave Pool)

2011-08-10T23:35:00.003-05:00

On Monday and Tuesday we took the kids to the Great Wolf Lodge in Wisconsin Dells for an overnight trip. We planned to meet up with Denis' coworker's family and hang out for the day. The trip to the Dells was three hours and the kids did amazingly well in the car. Thank goodness for the DVD player! They also slept part of the way, ensuring that they would have a late night afterward. Nikko didn't fuss or whine, just sat quietly in his chair watching whatever his siblings subjected him to (Thomas the Tank engine or Ice Age or The Wiggles). We arrived around 6:30pm and went to dinner. There was a little bit of time left to try out the water park amenities until the 9pm closing time. The kids loved the splash pads, but Nikko's true love was the wave pool. He let out some terrible cries when it was time to vacate the park, but it couldn't be helped. As I mentioned before, the kids fell asleep by 10:30p and not without me having to lay down with each of them to quiet their restless souls. After breakfast the next day, we were pretty much glued to the wave pool. Denis took the kids to the other slides, but one of us was always near Nikko.

If ever there was an activity that was the ideal sensory stimulator for Nikko, I would now peg it as the wave pool. What better way for him to be completely immersed in water, plus have the added benefit of waves crashing into his body with lots of force? Nikko tried to doggy paddle through the waves and I swear he is getting better at teaching himself how to swim. Every five minutes or so, the waves would stop and then start up again. The alarm preceding the waves was a recorded wolf howl. Nikko learned that whenever he heard the howl, the waves would start. And so when the waves stopped, he would swim over to Denis or me, look at us expectantly and howl. We joked that we should record the wolf howl and play it back every time we wanted Nikko to do something for us! Nikko picked up on conquering the waves rather quickly, timing his jumps with each rise. He never looked tired. NEVER. Nikko was truly in his own element. We couldn't get him to take a break for food or juice. The only thing that worked was for me to pick him up and drag him to the table, immediately shoving pizza into his face so he would see it and start eating. That's really what it took. Taking a break just wasn't an option for him. Toward the end of the day Nikko managed to run to the table a few times, grab a bite of leftover pizza, and come running back to the wave pool with crust shoved into his mouth. I don't think Nikko really looked for either Denis or myself when he was in the wave pool, I don't think he cared if we were nearby, and I don't think he cared about anything at all except the waves and the next wolf howl.

Leaving time was challenging. We had to take each kid to the showers one by one, and Nikko was last of course. He protested angrily, crying and yelling and thrashing. I was able to give him lollipops to settle down, and when he was able to sit still in a chair I could see the fatigue start to drift over his face. Nikko had been in the wave pool for almost six hours and he sported red blisters under his big toes from bouncing in the waves. He also swallowed quite a bit of water because he started coughing intermittently. Today he was sniffly and mellow so I warned the camp staff that he may not be compliant. Thankfully, I got a good report that he had a great day.

Play To Talk

2011-08-05T01:24:00.003-05:00

Karen, Nikko's speech therapist on Thursdays, recommended a book called Play To Talk; A Practical Guide to Help Your Late-Talking Child Join the Conversation by James MacDonald Ph.D. & Pam Stoika Ph.D. It's good reading but slow reading for me. It centers around the Communication Partners strategies (won't list them all here, kind of complex to describe) of playing/communicating/interacting more and talking less so that the child will learn to talk more. I'm almost halfway through the book and do intend to finish it. Examples of what the book reviews is matching Nikko's word output and giving him one more word to build on/build vocabulary; letting Nikko take the lead during play, sometimes take the lead myself, but always match the power; and entering his world of play instead of pushing him to meet MY agenda. Sounds easy, right?

Earlier today, before therapy, I saw Nikko siting on the couch, watching TV and playing with a plastic pterodactyl, making it say "Tweet tweet". Thinking I could easily join him in constructive play, I took a red, plush Angry Bird and sat next to Nikko. I put the Angry Bird next to the pterodactyl and said, "Caw caw!" I tilted my Angry Bird toward Nikko's bird and playfully pecked the bird's beaks. Without even looking at the birds, Nikko picked up my Angry Bird from my hand and tossed it over his shoulder. There I sat, without a bird, and my mind went blank. I think the word "DUH" was written on my forehead. Now what? I seriously didn't know what to do next. Ronin came by and was bugging me about the Angry Bird so I told him to go away so I could play with Nikko. But the moment had passed and Nikko had zero interest in playing with me, so I sheepishly walked away.

When I told Karen about this [lack of] interaction, she applauded me for trying a technique, then told me some ways I could try to engage him in the future. Since I no longer had a bird, I could have tried paying attention to HIS bird. I could have tried to pet the pterodactyl. Or I could have pretended to be a bird myself. She pointed out that the challenge is to react quickly and keep building on the situation even though he won't engage. IT WAS HARD, I won't lie. But the more I keep trying, hopefully the better I'll get at this. Gotta read more of the book!

NWSRA Camp

2011-07-26T00:18:00.003-05:00

This morning I put the kids in the Pilot and headed out toward Prince of Peace church to take Nikko to his first NWSRA camp. He'll be in it M/W/F for the next three weeks. I have been very nervous about making sure his backpack has everything on their detailed list, all his items labelled, his lunch (ok, it's a Lunchable) and snack packed, pull-ups and wipes together, and swim gear assembled. Remember that Nikko had missed last week's camp days because he was in that training class, so I haven't communicated with the NWSRA people for two weeks. We entered a gymnasium to meet up with the aides and I was thrown a little loop when Debbie (the psych) told me that Sam wasn't going to be Nikko's aide. Instead, it was a girl named Michelle who was running late. When I met her, she was a blonde girl, probably in college, and was very polite but didn't ask anything complicated other than did Nikko have any food allergies. Another boy, middle school maybe, was a volunteer assigned to help Michelle with Nikko and her two other charges, a boy named Colin and another kid that I didn't meet. In the gym, when it was time to go, I knelt down and said to Nikko, "Bye Nikko, see you later, have fun!" He leaned in to give me a kiss, then promptly turned around and started walking toward the door, grabbing Michelle's hand when she offered it.

And that was it!

I was surprised that Nikko didn't linger, didn't look back, and didn't have any resistance or a meltdown. I just handed Nikko off to a complete stranger and he didn't even know what he was walking into. When I look at the grand scheme of things as of late, it seems that Nikko has been very open to being outside of his home environment, even open to trying new things. And all along I thought he'd just be clingy on me. I should have remembered that he transitioned into ESY well, and that he had only a tiny bit of whining on the bus to the Illinois Experiential Training camp, for one morning. Their day included a field trip to Pirate's Cove in Elmhurst, then ended with time at Eagle Pool. We met the NWSRA team at the playground next to the pool and I let the other kids play on the apparatus since they have been cooped up inside all day with me. We were the last to leave, and ended up staying for a little snack before heading back. I really hope Nikko continues to have a successful camp experience. I also wonder what the plan will be when it rains.

High pain tolerance

2011-07-21T00:47:00.004-05:00

Nikko spent the morning of his birthday at that Illinois Experiential Program for Autism. This was his report today:

Nikko had an exceptional day today! He was greeted at the door with a "birthday boy" crown, too! Nikko has started to show his wants using a sentence strip that includes choices of preferred items. He also says, "I want_____" when constructing his phrases! Nikko excelled at a series of 10 new activities that assessed academic skills, life skills, sorting, matching, constructing and proper use of school supplies. Nikko is quite the cutter. :)

Nikko also had a blast playing in the water table! What a fun way to beat the heat!

I am very interested to see if I get a report at the end of the week regarding his progress.

In the afternoon, Denis came home early and we packed the kids into the Pilot to head out to the Wheeling Park District pool. It was at least 100 degrees outside today, so cooling off at the pool was the alternative to staying at home. It is also Nikko's preferred activity of all time. We were there for almost three hours. Toward the end, the kids wanted to play in the "playground" which was really the splash pad with slides and a huge water-dumping bucket. Nikko ran around quickly and took a spill at one point. I saw him fall at least twice but bounded up quickly. It wasn't until the third time around that I noticed Nikko kept stopping to touch his ankle. We went to inspect him and found the skin on part of his ankle and along his shin was scraped and bleeding. Time to go home! Denis took Nikko to First Aid where they cleaned the wounds and put two square band aids on them. I wondered if Nikko would rip them off right away but this time he seemed to accept the bandages. Nikko has a high pain tolerance and had I not scrutinized his behavior at the splash pad then I would not have noticed that he was mildly disturbed by something on his ankle.

After dinner this evening he came up to me and said, "Take it off" in reference to the bandages, but I refused him politely and shuffled him to his birthday cake. The kids and I had picked out a Thomas the Tank Engine Duplo blocks set, which mirrored the Sodor Island Fair set we already owned, so this ended up being in the win column. I think he'll be looking forward to playing with it the minute he wakes up tomorrow.

Speaking of tomorrow, we have an extremely busy day. Nikko goes to school in the morning by 8:55a. From 10-11am I have to take Ronin and Audrey to their last camp class. We're homebound until Nikko comes home at 1:45pm, and then at 2:30 we'll pack up the car and head out to Speech from 3-4pm. Then I'll have to shuffle the kiddos to Arlington Pediatrics before 5pm for Nikko and Audrey's annual physicals. I have to remember to pack the electronic games and the DVD player before heading out to speech!

Busy July

2011-07-19T23:09:00.003-05:00

I've been pretty absent about blogging lately. It's been a busy month. After Nikko's ESY class ended, he had two weeks off before starting up with the second round of camps. He's participating in something called the Illinois Experiential Program for Autism every day this week. Sponsored by the NSSEO (Northwest Suburban Special Education Organization) it's basically a program where they train other educators/teachers on autism and the kids participating are the guinea pigs. We heard it was a great experience for the kids because they get all this attention from professionals and they could even shed some light on behavioral issues. It's day two and so far Nikko is rolling with the punches. He was upset and whining when first getting buckled in on the bus yesterday, but today he willingly got into his seat and was ok with me pulling the seat belt tight. I was a little freaked out because he was sitting with a lap belt on instead of a harness. The bus driver couldn't seem to give me an explanation as to why Nikko didn't get to wear a harness. Luckily for the driver, Nikko stayed in his seat the entire trip, but he managed to wriggle out of his seat belt. (Sigh)

After this week of training, Nikko will continue with his NWSRA camp, 3 days/week. I'm looking forward to his experience at this camp because he'll be having FUN, going swimming and just being around other people that know how to handle kids like him. I met Sam, his aide, and feel comfortable knowing that Nikko will have a guy showing him around. I just hope Sam will remember to change Nikko's diaper as needed.

Finally, it's important to note that this is the eve before Nikko's fifth birthday. I read back to my entry one year ago and Nikko was at the beginning stages of being verbal. It makes a world of difference to be able to hear his voice! Just today, when in the basement with Rebecca the ABA therapist, Nikko was scripting from one of the Signing Time DVDs. He was talking about the signs for Grandmother ("Just like the sign for Mom, but it moves forward) and Grandfather. I remarked aloud, "It's kind of neat to hear him scripting, because I think that must be how his voice would sound like if he were having regular conversations." For a split second I suddenly felt so very sad that Nikko wasn't actually HAVING conversations but was just repeating things he heard from another source. I had to shake it off, however, and just be grateful that Nikko has the capacity to talk, if not the motivation. His overall communication abilities has improved over the past year, using gestures, signs and broken speech (don't forget the whining) to communicate if he wants something.

And Nikko's been a very happy camper, especially when we head out to the park district pool. He is truly in a better place when he's in the water. We hope to take the kids to the pool tomorrow, since that is Nikko's most favorite activity. Happy birthday, Nikko!

More Nikko

2011-07-08T01:04:00.002-05:00

It's not that there hasn't been anything going on with Nikko lately; I have not been able to carve out the time to blog. Shame shame shame! But I'll give snippets where I can.

Yesterday while going to bed my arms felt extremely tired, as if I had lifted a ton of weight while working out. The problem was that I didn't lift that evening, just ran cardio (and Jillian Michaels Shred). I realized that my arms were tired from restraining Nikko in the eye doctor's chair in the afternoon. It was his first eye exam ever and I was very anxious about how it would turn out. Armed with the iPod Touch and lollipops, we arrived late and were serviced late as to be expected. The ophthalmologist was Dr. Anderson and she was a very calm, soft-voiced, kind-hearted person. Nikko sat in my lap unwillingly for the first two minutes, and then he really started thrashing when I had to cross his arms and hold them tight while she put eye drops in his eyes to dilate the pupils. This would take around 30 minutes. When we came back to the chair, Nikko was whining and trying to pull away from my grip. I was able to hold him somewhat still while she used lenses and a flashlight to shine and look through to the backs of his eyeballs. Luckily, he doesn't need to wear glasses and we can come back in two years. Hooray! And next, I've got to prepare him somehow for a visit to the dentist next month. Or maybe I should lift weights and improve my upper-body strength to deal with the restraint I'll need for the dentist. How in the heck are they going to keep his mouth open for this?

This morning, before I changed Nikko's diaper, he came up to me and said, "Go pee pee in potty?" I took him to the bathroom, got him on the toilet, and didn't think he'd really do anything. He didn't pee. But he did eek out a little bit of poo. Hooray! I didn't notice this until after he got up, so his potty song was ill-timed. Still, I thought that was a good effort on Nikko's part. Not repeated for the rest of the day, however. I think the correlation is there, but this inability to have more solid bm's is delaying the potty training.

Nikko was approved for OT services at Arlington Pediatric Therapy. Hooray! It will start next week on Fridays with the same OT who did the evaluation on him. Another nice lady named Karen. Our insurance will run out within the next two sessions and we'll continue for the rest of the summer to see if OT makes any improvements. If so, I might consider dropping speech so that he can make improvements with his entire body, but that's a very early assumption. I'm just grateful the OT came through. Yes, I had to make my second phone call to the OT office to make it happen, but at least they called me back.

Sleeping situation hasn't improved at all. Nikko still needs help falling asleep, Nikko still wakes up in the middle of the night, looking for me to put him back to bed. He's been averaging between 1-2am for wakings, but tonight he woke up at 12 midnight.

Getting back to balance

2011-06-19T01:32:00.002-05:00

The sleeping issue is morphing into a situation that I don't know how much more of it I can take. Nikko will fall asleep with the help of 1/4 tablet of melatonin. Then he will wake up some time between 12:30-2am and look for me, just so I can put him back to bed. He'll pull over the crib mattress and expect me to lay on it until he falls asleep. Tonight I stacked some blankets on it so I could leave the room after he fell back asleep, hopefully thinking it's still me. I know, I know, I should get rid of the crib mattress from his room. It's really there so that if Nikko wakes up later in the morning, like 3 or 4 am, then I can just sleep on the mattress so I don't have to keep getting up to walk him back. It's working for now, but maybe after summer school is over and during that week break before NWSRA camp begins, I'll try walking Nikko back to his room repeatedly. It's a process that will cause us both to lose sleep, so I'm not looking forward to it.

Nikko is getting proficient at requesting using one/two words. The overall problem is that he is not initiating using words. If he wants something, he will put something in my face (like his sippy cup for apple juice) or he'll push and pull me to where he wants me to go. The whole point of using PECS with Nikko at this stage is to encourage him to use his words when handing off the picture to me. But if Nikko requests using his words, I'm supposed to forgo the picture and give him what he asks for. He's also getting much better while riding his tricycle. Today I took the kids to the playground next to Westbrook School, putting the boys' bikes in the trunk. Nikko was eager to ride around the playground equipment on a strip of sidewalk so he put his bike helmet in my hands and waited. I said, "Put on helmet?" He repeated it and I snapped it on. He quickly turned to jump on his bike and took off. I seriously think he enjoyed that more than anything. Nikko has also been asking to watch the same movies in a maddening rotation: Bolt, Playtime Signs, Mighty Machines, Monsters Inc. (but he brings me the DVD cover and asks for Mike Wakowski), and Up. I like Bolt a lot, but I've watched it way too many times in the past week.

Which reminds me, this past week was very tiresome for me! Hate to sound whiny, but it's the truth. It was the first week of summer school (Extended School Year, or ESY) and was truly the first time I experienced shuffling the kids around to their various classes/activities. Nikko's ESY is five days a week from 9am-12pm. Since Ronin's original park district class got cancelled, I had to merge him with Audrey's preschool primer class at the park district, which is an hour on Thursdays. I wanted Ronin to have a more comprehensive class on his own and enrolled him in the Friday Central Alphabet Station preschool class, 9:30am-11:30am. There has been some spare time between drop-offs and pick-ups so I took the little ones to the library one day, the park outside the school the next. Earlier in the week I took the kids with me to run errands at Target, Costco and Jewel, and it was stressful. They both wanted toys they couldn't have. I'll try to reduce my trips with multiple kids! I know that things won't get any easier regarding the chauffeuring, but it's been a balancing act to see if I could pull off these schedules.

One last note: I found out that Ronin will be in Mrs. McCarthy/Ms. Winter's preschool class next fall because his current teachers got relocated. When they told me, I felt as if I had won the lottery. Another big bonus is that a slot opened in the morning class, so we took it. I hope this is coordinated with the front office for sure. Having Ronin go to school in the morning will work out great with my schedule. I'll probably have to drive all three kids, but Nikko can take the bus home at the end of the day. The boys would be dropped off at school, then I'd take Audrey to the Rec Plex for her own preschool class. After two hours, I'd pick up Ronin and Audrey, take them home for lunch. Perfect!

Increased speech and comprehension

2011-06-15T01:37:00.002-05:00

Over the past few weeks that I've been laptop-less, Nikko has been steadily progressing verbally. He's been rewatching the Signing Time DVD series, largely because I have two hardcover books from two Signing Time DVDs: My First Signs and the other is Everyday Signs. The books reinforce what he watches on TV, and he is often mimicking the sign along with the word. Nikko is making some wonderful gains:

He can put his socks on, when told that it's time to put on our socks and shoes.

He can request a different DVD by saying, "Watch TV, watch Playtime Signs." He garbles up Mighty Machines but I've figured out when he says it.

He clearly says, "I need help" accompanied by the sign, when he needs obvious help putting a train together.

At snack time today with Rebecca, instead of picking up the ice cream PEC picture, I heard him say, "Give me ice cream!" We looked at each other, surprised.

He is picking up on phrases in his immediate environment.

--But there are drawbacks right now as well. His poop is the same, not healng, but I'm tweaking the dosages so that he will have to expel more of something.

He gets upset more easily than before, be it because of dropped french fries or that his tv program was changed. Somewhat hard to calm him down.

And the sleep issues. Oy! He won't fall alseep on his own at bedtime. He can defeat the child-proof knob cover. He used to get up at 5:30am and get into our bed. Nowadays he's getting up by 4:00am. By then I'm already his best friend and sleeping in the room. There are some 2am wakings as well, but I'll know for sure later on.

"I need help"

2011-06-15T01:35:00.002-05:00

6/11/11 - Today, Nikko put on his socks for the first time. I wonder if he was tired of waiting for his turn, since Ronin steps ahead of him practically every time. I was very impressed with Nikko's efforts. And I told Karen this morning that two phrases from Nikko as of late are:

"I need help"-- he says it in a monotone and includes the sign for it. The intention is also very apparent.
"Change my diaper."-- he said this to me, using the sign as well, right before we started playing with Rhonda's kids who came over got a playdate two days ago.

Karen reminded me gently that while the expressive component may still be having trouble, the cognitive is totally there and she sees no problem in Nikko's future for him to work at grade level, with supports to keep him on task. She referred to his efforts today at speech, where he was able to identify things from a field of TWENTY. He'd put the object in a hat when completed. Then she made him take the object OUT of the hat and name it. He did very well!

I'm back!

2011-06-13T01:24:00.002-05:00

I'm finally back!

Three weeks ago the hard drive crashed on my laptop. It became inoperable. And we're still not sure if we lost EVERYTHING on the hard drive. The most valuable things are the pictures of the kids. Going to have to work a miracle to save those pictures, or cough up boofoo bucks. It wasn't until this weekend that the shipment of recovery discs from the laptop company arrived and Denis installed. Once the internet was back, all was better. And days before the discs arrived, a freak power outage at 8:00 am on a Wednesdays must have fried the motherboard in our desktop computer, causing another shutdown. The hard drive was salvageable this time, but we were out of our two most important electronic devices for two days. Luckily, I was able to use my iPod Touch to stay connected, but blogging on it would be a laborious task. I think I managed to type something worthy of an entry that I have to figure out how to download. So today, I will just let you know that I'll be back in blogging business shortly.

Nikko's doing really well, by the way. :)

Catch-up part deux

2011-05-25T00:19:00.002-05:00

Our laptop hard drive crashed last week so I've definitely got a backlog of entries now.

5/18/11 - School Report - Nikko liked playing in the beach area with the ice cream and wearing the flippers! Speech: we worked on household vocabulary. Great job naming and saying "I don't know." Blowed bubbles and played cars.

5/20/11 - School Report - Speech: I think we tell Nikko Yay! too often. When naming pictures he says, "Banana YAY! Apple Yay!" Too funny! :) We worked in greetings, requesting, association pictures.

5/24/11 - School Report - OT: Good session. Heavy work warm-up activities. Then at table worked on flower project, cutting, name printing, and face drawing.

I went to Las Vegas on Thursday evening, came back on Sunday afternoon. I called every day to talk to the kiddos and Denis told me that on Friday Nikko was very sad. He sat on the kitchen floor and wailed, "I'm so sad! I'm so sad!" and he also said, "Mommy go home!" That made me feel both bad and good at the same time. The kids were glad when I came back, and even happier when I showed them their souvenir: Angry Birds t-shirts! Nikko got the black bomb bird and I gave Ronin and Audrey a red bird shirt each.

Nikko is in good moods as of late, but he's not having regular bowel movements yet. He was on 2 tsp magnesium citrate. On Sunday evening, the night I got back, he had one big bowel movement in the early evening, which could have been a culmination of the past two days I was away. That's good news, but yesterday and today he didn't have any poopy diapers, only pee. He needs to have a bm tomorrow! I upped his dosage to 2.5 tsp today and hope there are some results tomorrow. He's not in any visible pain, nor is he straining more than usual. Still, he needs to poop.

Another short.

2011-05-19T14:58:00.003-05:00

5/18/11 - School Report - Nikko liked playing in the beach area with the ice cream and wearing the flippers! Speech: we worked on household vocabulary. Great job naming and saying "I don't know", blow bubbles and played cars.

Short and sweet

2011-05-18T02:13:00.002-05:00

5/17/11 - School Report - OT: Expressing wants today. 2 times on swing said, "Finished?" Then, when working on name, was doing all sorts of things to avoid working - when I got firm, Nikko got teary and said, "I am tired!" Needless to say we stopped and Nikko then went on to working on the cut/glue/draw watermelon paper.

Amazing! I'd chalk that up to a good school day. :)

Catching up

2011-05-11T01:20:00.005-05:00

Sorry I've been really behind on posts. During the week school-wise, Nikko was pretty much doing requesting, greetings, vocab. There were no extraordinary notes on his reports. I took him to speech on Wednesday and Friday, and both days he started out kind of rough at home. It didn't affect his sessions, however. He continued to do well. After Karen's session she explained more about Nikko's level of speech, that he's really at the 2-3 year old mark. The problem for me is that the 2 and 3 year olds that I have right now have atypical speech. Their speech is more advanced than the typical, so it's really confusing for me to know where Nikko should be. Karen said I should expect him to say 2-3 word sentences, possibly 3-4 or 4-5 words. I should expect him to say a word upon request and hold out until he says it. I think that's fine and very in line with what we're doing.

On the home front, Nikko has been on an emotional roller coaster. His rigidity shows in the leaving routine. With the changing of the seasons, he's not used to being told to put on his Crocs instead of his shoes and socks. He's also used to hauling a jacket outside, but with some sporadic days of 80 degree weather he was thoroughly confused. I would tell him to put his fleece back and he'd look at me confused, then proceed to get upset and break down on the floor. That made for some difficult transitions out the door. He has no problem with wearing shorts instead of sweat pants, however. I'm hoping that this transition will pass quickly. The temperatures dove back into the 50's so we're in for some more rough times.

I've started keeping a food journal on Nikko. Still rough. But it will help me see if food infractions are causing some behavior problems. I might have to blame today's post-dinner refusal to finish his food and to lay on the floor ignoring my requests as a food infraction or a sugar overload. We went to a birthday party for cousin Ian and Nikko had frosting from the cake. He also had lollipops and some Smarties. I wonder if this made him more stimmy toward dinner. After Audrey's bath and before the boys', I saw him curled face down on the couch as if he were sleeping. He wasn't, but he was also scripting a lot. I coaxed him down to the floor for a diaper change and then I saw an opportunity to give him some deep pressure with two square floor pillows I bought from Costco. I put Nikko on top of one pillow and then put the other on top of him, saying "Sandwich!" He loved it, of course. It's an old OT game that's very appropriate for him.

Turning tide

2011-05-09T01:51:00.002-05:00

5/6/11 School Report - Speech: Worked on greetings, requesting, associations and books.

On Friday before speech, I had a nice conversation with Karen. I wanted to warn her that Nikko was coming off of two days of being a zombie. While we spoke, he was covering his ears and hunkered over a chair. But he ended up having a good speech day. Karen was very open to listening me ask questions regarding diet infractions. She has a client whose child is heavily on supplements, so I jumped to ask if Karen might know a local DAN doctor. I'm really at the ground floor of the biomed game and have tons of research to do, but I am open to finding someone local if we can swing it. Nikko's reactions last week and the week prior are the writing on the wall for me to investigate biomed for him.

Zombie

2011-05-06T01:51:00.003-05:00

5/5/11
The painful thing about speech gains is that when there's a regression or something is wrong but you can't identify it, those negatives are magnified a thousandfold. Today Nikko was very, very spacy. He was "out" of it. Eyes a little glazed as he sat at the kitchen table. No speech unless prompted, but had a few moments where he would repeat song lyrics. Almost in a zombie state. He didn't eat breakfast well, lunch was slow, and at dinner I had to pick up his fork and feed him ravioli. He got up from his chair to look into the hallway at our bedroom door, then go back and sit down again. He looked at me at times. He looked THROUGH me most of the time. Where did my Nikko go? I couldn't get much out of him in the way of tickles, either, which is not a good sign. He didn't show any physical discomfort, didn't go run off straining to have a poop, didn't hold his tummy or his head or his hand to indicate pain. This is the toughest part of being Nikko, not being able to communicate.

Did I mention my theory a few days ago about grapes? He was acting really stimmy last week out of the blue and I wondered if it was something he ate. Through research and great help from online friends, I found out that grapes have phenol in them. Phenol and other things like food dyes can cause stimminess, uncontrollable laughter, and the zombie state. There are so many other things that can affect behavior as well. Like bananas. Yikes! But since I eliminated the grapes, and the last banana he had was two days ago, I am wondering what is triggering this negative behavior. Could it be the fruit snacks from a few days ago? I would think that ingesting an irritant would cause an almost immediate reaction, not one delayed for days (although it would take days for the offending ingredients to leave his system, I'm told). I am just at a loss at the moment because a few days ago Nikko was laughing and bright and cheerful, and right now I've got a zombie boy. It's breaking my heart that I can't pull him from this.

It's the little things, people.

2011-05-04T22:57:00.006-05:00

5/3/11 School Report - OT: Swing work- doing well with this. Also worked with unifex cubes - put his name on some that you can have Nikko use at home. Worked on coloring/name printing.
Speech - new vocabulary - requesting - greetings

On Monday, Nikko reached a major milestone. He was able to independently pedal and steer a tricycle. I took video of it, with Ronin racing around and ahead of us.

Do you know what else was pretty cool? I posted the video on Facebook around 2am (lately the usual bed time for me, but my intentions are earlier). When I turned on the computer after 8:30am, I was stunned to see that 16 people "liked" the video link and 9 people had shared encouraging comments. I was so touched and overwhelmed that I almost started to cry. By the end of the day there were around 35 "likes" and 19 comments of encouragement. I wasn't expecting that kind of feedback, or any kind, at all. What I thought was cool was that everyone who interacted with that video post, by watching it or just liking it or even taking a moment to comment on it, left an impression with me that they understand how hard it was, how something so taken for granted could be a major milestone for another. Every single person who clicked on that video or left a comment got a big gold star in my personal book of "People to remember who were nice to Nikko."

All fun stuff aside, yesterday after Nikko came home from swim class, he was extremely fatigued and was nodding off before bed time. And then today he was just not himself. Nikko wasn't happy or laughing or interacting very much. After ABA, Rebecca alarmed me when she said, "Nikko seemed really tired today, and it looked like he was having an absent seizure because his eyes were rolling in the back of his head as he nodded off between drills." The absent seizure remark rattled me a little bit because I've been reading things online pertaining to the seizures that some kids with autism can be experiencing without even knowing it was a seizure. It really puts the non-verbal or emerging non-verbal kids (like Nikko) at a disadvantage. Some parents put their kid through an EEG to rule out the possibility of seizures, but I don't even want to start entertaining that thought if I don't have to. He ended the night kind of sober, just playing with the iPod Touch. I just checked on him this evening (approx. 1:30am) and his head was so sweaty that the pillowcase underneath was soaked. I wonder if Nikko is coming down with something. I REALLY hope not!

Two great things today

2011-05-01T16:04:00.005-05:00

At lunchtime we decided to take the kids out to Mitsuwa Marketplace so we could get away from the house and the sump pump issues that kept us homebound all weekend. (It broke on Friday, the utility room was flooded and it seeped into the larger area. A yucky mess.) I heated up chicken nuggets for Ronin and put together Nikko's latest fave: a "turkey and cheese sandwich" which is really soft wheat bread with the crusts cut off and half a slice of cheddar cheese, SANS turkey. Every time Nikko wants one he says the entire phrase. We put the kids in the car and were backing out of the driveway when I looked at Nikko, who put a hand out to me and whined a little. I asked him what he wanted and he said, "Seatbelt." I glanced at his straps and saw that they indeed weren't fastened. Oops! Ok, safety gaffe. But I was impressed that Nikko was able to recognize that he wasn't strapped into his seat, was bothered by it, and brought it to my attention. He could have continued to sit there without a seat belt, but didn't. Ronin was able to tell me when he wasn't buckled in at 2.5 years old. For Nikko, this is progress!

When we got home from lunch and a quick stop to the grocery, the boys wanted to play outside. Audrey had fallen asleep in the carseat so Denis took her inside. I had Ronin on his big wheel trike and Nikko made a beeline for the Radio Flyer tricycle. He got really upset because it wasn't working and on further inspection I saw that a bolt and screw had fallen off the front wheel axle. I fixed it, but not without Nikko doing a lot of shrieking and crying. I almost gave up because of that shrieking. Still, I wanted Nikko to have the opportunity to ride it, and away we went. To my surprise, Nikko was pedaling with his feet and steering, albeit slightly clumsily. He kept looking up over his right shoulder. Maybe he was listening to his guardian angel who was coaching him to keep rotating one foot with the other, to use his core muscles and push forward. Nikko was riding a tricycle! I had my camera and tried to film it. I think I got a little choked up while narrating so I stopped. But really, I felt so, so proud of Nikko. I had no idea when the time would come that he would make sense out of alternating bike pedals. This seems silly and trivial to a regular kid, but to me it is HUGE for Nikko. Can't say enough, I am so proud of him.

Sad

2011-04-29T23:22:00.003-05:00

I was getting Nikko ready to sit on the toilet while Denis would give Ronin a bath. The two boys were scrambling for a second on the bathroom floor and then Nikko came up with his hands over his face, which was contorted into the beginning of a cry.

I looked sternly at Ronin, who stood in the tub, and he squawked, "No, Nikko, don't take my car! I want my racing car!"

I gave Nikko a hug and told him I was so sorry. He cried a little bit, and then he put his open hand over his face, dragging the hand downward and said, "Sad. Sad. Sad." I was surprised and smiled over at Denis because Nikko signed Sad, said it, and identified an emotion correctly.

I also made the sign for Cry (dragging both index fingers down your cheeks like tears) and said, "Cry? Cry, Nikko?" He stopped and looked at me for a second, then scrunched up his eyes and cheeks and made a fake whining noise as if he were crying. I burst into laughter because he was acting out a Cry, while his real cry was finished a minute ago. He knew what he was doing. I started signing Happy and Laugh to move on, and to get him sitting on the toilet.

Two letters

2011-04-29T01:49:00.002-05:00

Nikko drew circles (rather, ovals) all over a page of a spiral notebook. I was chanting his name and the letters in it, and he started repeating his letters, too. I put the brown marker in his hand and actually let him guide me in drawing two letters: K and O. So we almost spelled his name. I definitely praised him for his written efforts!!

On-paper gains

2011-04-28T01:44:00.004-05:00

4/27/11 School Report - Speech: Seemed very tired today. Kept putting his head on the table. Worked on requesting, vocab and questions.

I don't know why, but Nikko's been waking up around 5:50am, opening his child-proof knobbed door, racing down the hall to our room and leaping into our bed. He babbled and babbled for about 40 minutes when I finally, grumpily escorted him out of the room and into the living room to await his sibs' wakings. And he stayed awake until I put him on the bus. I don't know if he falls asleep going to school, and I really hope he does. I know that he was sleeping on the way home from school and I hope that extra boost helped him have a successful ABA session with Rebecca.

Two things to note: yesterday Nikko was sitting at the kitchen table with a tablet of blank paper in front of him and markers strewn across the surface. I wasn't even paying attention to him until I walked by and saw that he had drawn an assortment of circle shapes on the paper. They looked like blobs, some ovals and other misshapen circles, but they were indeed circles all on one page. I praised him for his artistic efforts and made note to tear out that page and save it.

The second thing happened today. In his backpack there was a sheet of paper with his name written in yellow marker. Underneath he had attempted to copy the letters. I asked Nikko what it was and he said, "N, I, K, K, O." He didn't say "Nikko" so I don't know if he understood it was his name. I ran my finger under the letters and said "Nikko!" but he spelled each letter out again. That's fine with me, quite honestly. I'll take it!

Ice cream cones

2011-04-27T01:26:00.004-05:00

4/26/11 School Report - OT: Obstacle course several times - then worked on coloring and name printing. Responded to greeting appropriately and spelled out letter in name. Gave Nikko free choice at the end of session. Good working today!

I'm on high alert. Nikko had ONE poop smear yesterday, and today his only poop came twice by the end of the evening. I wonder if a pattern is forming here, at 1/4 capful of Miralax. He's still in good spirits. His toy hoarding has morphed into carrying around some velcro ice cream cones from IKEA. In fact, is it sad to say, that on Easter at my mom's house it was the first time that the kids ate ice cream from ice cream cones? I think I've just carried ice cream sandwiches in the freezer, or dished out the occasional ice cream in a bowl. But lately the images of ice cream on TV are portrayed in a cone, so the kids were tiring of the sandwiches. I can't say it wasn't a messy scene. However, today on our grocery trip I slipped a box of ice cream cones in the cart, with the intention of getting some Ronin-safe ice cream from Whole Foods and regular ice cream from anywhere else.

Catching up

2011-04-25T01:16:00.004-05:00

4/20/11 - School report - Speech: Worked on yes/no. Said "Hi Ms. Winters"!

I haven't posted in a few days. Nothing's wrong, we had Easter at my mom's house today, it's just that I'm sitting back and watching Nikko, listening and thinking about stuff. His sing-songy self is constant. Jenna and Kathy noted this during his ABA session on Thursday, that he can get preferred tasks completed but easily gets distracted. He had a good speech session on Friday morning with Karen. She pushes him to request things and he seems to comply, as she waits him out through any frustrations he has. She also noted that he has problems filtering out background noise.

I received Nikko's OT evaluation in the mail. Karen Conkle, the lady who conducted the eval, warned me on that day that the report would sound very negative, but in actuality she saw a lot of good things during the eval. But his actual eval states a lot of the things I already knew. Little attention span. Unfocused. Prefers his own activities. Low muscle tone. I really hope we'll be able to get him OT over the summer. I think it will make a world of difference before K starts.

Speech gain :)

2011-04-20T00:04:00.003-05:00

4/13/11 School Report - Speech: Good job verb identification. Worked on requesting.
4/14/11 School Report - Speech: worked on yes/no, requesting, playing doll house. He wanted help with a game and said "help" 3 times.

Those were from last week. Our IEP meeting was yesterday. Today he went back to school.

4/19/11 School Report - Bathroom: Nikko went potty and was dry.
OT: Lots of great talking today. Responded to my greeting "Hi, Mrs. I," did so with Ms. Winters, too! Also aid "get chair" when on the swing. Nikko helps me put swing up & down with a chair. I believe was Nikko's way of wanting ot get off swing. Also worked at table with drawing/tracing/printing name.
Speech: Nikko was very happy today! Worked on requesting, saying "no" to cauliflower snack. Went to office for greetings, said "Hi Ryndak" & "K" for Mrs. Kaczynski! I asked, "Where's Ronin?" he said, "Home". I said no - he said, "Audrey's at home." & then got "Mommy's at home." GOOD DAY!!!

Um, that's just amazing. AMAZING!!

Today Nikko had swim class (for another three weeks through the NWSRA) and he seemed very excited about getting out of the door when Denis came home. He approached me eagerly to put on shoes and socks, shoved his jacket at me to help him put it on, and was literally nose-pressed against the door impatiently waiting for Denis. That Nikko loves the water. He's been behaving regarding the clothes-stripping, or maybe I've been better at catching him before he decides to strip. I really have to do some research on motility, because I see Nikko in the hallway, hunched over, crossed legs, and straining to push something out. When the diaper change happens, it's a small, mushy mess. We're at 1/4 capful now and I'm hoping that the poop smears will become less frequent. That is the goal, and it is trending less very slightly. I mean very.

I fear the fruit snack invasion again. I bought some from Costco, to try giving it as a snack to the kids. Of course they love it. However, Nikko is starting to ask for it frequently. He is mastering opening the doors WITH the child-proof handles on, and can access the pantry. He saw the fruit snack box in the pantry the other day and was repeatedly opening that door this morning. I had to take the box and hide it in our room. Now when Nikko opens the door he looks a little confused at the void where the box had been.

One big thing to note from the meeting yesterday was that we were able to discuss the whole "I want_____" interaction while Linda H. was present. Both the teachers and I were having to work really hard to get Nikko to say it as a precursor to getting a reinforcer. Linda told us that we should stop demanding the I Want from him. It's a level of language that he is just not at right now, and we should go back to the single word requesting. I asked for how long and the answer was kind of unclear. I guess it depends on Nikko, when he is able to show us that he understands the value of language and the value of requesting in a more complex way to get what he wants.

Nikko in a nutshell

2011-04-19T02:12:00.006-05:00

Since I'm sitting here waiting for my damp hair to dry, I figured I could do some quick typing of 7 numbered needs and supports.

Today was Nikko's IEP meeting. It went well and despite my underlying fears that Nikko will be eaten alive in Kindergarten, I was pleased with the accommodations and supports that will be made available to him next year. I will type the goals another night, but for now I wanted to get the Autism Considerations documented. I believe the school team and Linda created this sheet, which basically profiles Nikko, his needs and what supports should be given to him:

1. Verbal and nonverbal communication needs
Student Needs: Nikko demonstrates significant verbal and nonverbal language delays. Nikko uses single words and a few rote phrases to communicate inconsistently. Adult prompting is needed to elicit verbal communication including greeting, answering questions and requesting. He can be observed to use non-purposeful verbalization including singing/humming when he is not actively engaged in an activity.

Supports Identified: Continued use of picture schedule and picture choice boards during the day. Nikko requires others to be very intrusive to gain his attention. Wait time is required for Nikko to verbally request an object before it is given.

2. Social interaction skills and proficiencies
Student Needs: Nikko is not yet consistently responding to greeting and needs verbal and visual cues. When he does respond to greeting he will repeat "hi Nikko." Nikko plays functionally with toys appropriately. He will play alongside with peers using the same materials. He continues to need adult facilitation to maintain turn-taking.

Supports Identified: Adult facilitation and direct instruction on how to play/interact with peers. Teach use of appropriate social phrases. Direct practice of social skills.

3. Needs resulting from unusual responses to sensory experiences
Student Needs: Nikko shows an increased need for deep pressure inputs. He can be sensitive at times to loud noises.

Supports Identified: Use of frequently scheduled movement breaks. Use cube chair to define personal space. Use of visual cues to help with coping.

4. Needs resulting from resistance to environmental change or change in daily routines.
Student Needs: Nikko is generally compliant with changes to routine but he can become anxious or upset when a preferred activity is denied.

Supports Identified: Use of visual picture schedule. Verbal reassurance and use of scripted coping statements.

5. Needs resulting from engagement in repetitive activities and stereotyped movements.
Student Needs: Nikko has shown great improvement in this area. He no longer lines up toys. He will still look at objects out of the corner of his eye but this has significantly decreased this year. When moving in the hallway, Nikko frequently is seen to drag his hand or body along the wall.

Supports Identified: Visual, verbal and physical redirection for increased participation.

6. Need for any positive behavioral interventions, strategies and supports.
Student Needs: requires hand-over-hand to learn new motor tasks. Break down directions.

Supports Identified: Positive reinforcement. Break down directions. Hand over hand to learn new motor tasks. Scripted language cues. Modeling appropriate behavior.

7. Other needs which impact progress in the general curriculum, including social and emotional development.
Student Needs: Lack of sustained attention and focus interferes with participation. His demonstration [of] skills is inconsistent. Nikko can be seen to avoid activities and it is difficult to determine if he is able to do the activity or is avoiding the task.

Supports Identified: Verbal, visual, physical redirectioning. Consistent review of learning skills. Break down tasks. Use of firm, intrusive, direct commands to make sure Nikko understand what is expected of him.

Another document I liked that wasn't the actual IEP but was the additional notes page:

On the 4/18/11 meeting, it was recommended that Nikko should begin kindergarten by attending 30 minutes of the opening routine and 30 minutes of centers, music, library and P.E. Nikko will begin by attending 1-hour per day in kindergarten and gradually increase time spent in the kindergarten classroom. Time not spent in kindergarten will be used for ABA and work station time. Discrete Trials/ABA and work situation should be at least 4 days per week.

"Ice Cream" phrase

2011-04-16T02:33:00.003-05:00

For a few weeks now, Nikko has been carrying around what looks like a plastic egg carton carried (without the bottom, so it looks like a ladder frame) and he put six little fabric ice cream balls in each square. They fall out when not strategically placed in its own square, so it's a pain to find these balls when they become loose.

Tonight I was driving home from the in-laws when I turned around briefly to glance at the kids. Nikko saw my head turn and he locked his eyes on me.

"Dropped the ice cream," he said.

"Oh yeah? Let me see if I can reach it." I was at a red light, thankfully, so I quickly reached behind my seat (not an easy feat) and was able to scoop up one of the balls on the car floor and hand it back to Nikko. It dawned on me that he actually TOLD me an independent thought, something that he didn't repeat back to me. He did this earlier today, possibly yesterday, when we were in the kitchen, but I can't remember what phrase was said. This was the most distinct, and I wanted to get it recorded so I don't forget when it happened.

I'm noting this because on Tuesday I had started giving Nikko half a capsule of a Culturelle probiotic in his morning juice/chocolate milk. On the same day I started his 1/2 capful of Miralax. I would like to think that the probiotic might "help" Nikko's speech somehow.

Monster trucks

2011-04-13T00:42:00.002-05:00

4/12/11 School Report - OT: Tolerated swing for a few minutes. Did great shape drawing at wipe off board but then at table- did very little on paper. Worked on cutting.
ST: Good job making choices today: "blue box" or "green box". Good job with no; with is this [person's name]? Worked on vocab and wh?.

This morning, Ronin was at the kitchen table playing with two monster trucks when Nikko came over, took one and started running it back and forth. It took place within 6 or 7 seconds, and then Nikko walked away to get something from another table.

Ronin said, "Nikko, play with me," and he tried to give Nikko a truck.

Nikko wasn't even looking at Ronin anymore. He looked over Ronin's head and was lining up a red felt barn.

Ronin repeated, "Nikko, play with me," and kept trying to hand over a truck to Nikko, and I felt my heart breaking into little pieces. I took Ronin into my lap and told him that Nikko was distracted and had moved on to playing something else, but maybe he would play with Ronin later on. Ronin looked very disappointed and walked away dragging his feet. My suggestion to find Audrey and ask her to play was heard with deaf ears.

At Nikko's OT evaluation at 10a, we sat on the busy side of APT to wait for the evaluation to end. Ronin brought his trucks and befriended another boy in the waiting room who also had monster trucks, albeit bigger ones. They ran their trucks around the room, under chairs, crashing them into the air and each other. Ronin had a blast with this kid named Brice. I heard Brice ask Ronin, "How old are you?"

"I'm three years old," Ronin replied.

"Three!" Brice was surprised. When Ronin asked his age, Brice replied, "Five." They chitchatted about how old each would be in two years, and then they went back to crashing monster trucks together. I was relieved that Brice didn't write off Ronin as a little baby toddler, and I was thankful that Ronin was able to hold his own in a conversation with a complete stranger boy. It made me wistful later on that Ronin had so much fun playing with this stranger boy and could not muster up one iota of interest in his own brother. It is not fair.

2nd Opinion / Speech woes

2011-04-12T01:01:00.004-05:00

I got a return phone call from the gastro. I asked her if it would be ok if I switched Nikko from mineral oil back to Miralax? My reasoning being that he was constantly leaking oil and it had created some new behavioral problems, specifically him wanting to rip off his diaper whenever he felt something leaking. She said sure, that was fine. I told her that we left off at a capful as the dosage. She asked if I wanted to try it at 3/4 capful and I told her that like the mineral oil, where she concluded that he was being overdosed at 3 tablespoons, at everything above 1/2 a capful he was having poop smears frequently. She said she didn't want him to go below a 1/2 capful and I said fine. Probably to help ease him back into Miralax. Fine. I told her that I'd give it a try for two weeks to see if a pattern develops and then I'd call her. She said that was fine. And that was it.

I am now going to look for a second opinion (thanks, Heather).

On another topic, it's a wonder that I don't go get a degree in Speech Language Pathology, because had I known I was supposed to get one of those as well as my degree in Gastroenterology, I would have been better equipped to deal with Nikko today or over the past few weeks. Why is it that Nikko chatters and babbles, is echolalic and can sing a simple tune he hears on the TV or can repeat a silly phrase his brother chanted seconds before, but when *I* ask him to say, "I want_____" he looks at me with horror and starts cranking up the whine machine? This morning he saw a cylindrical container of stick cookies with a chocolate dipping sauce, procured from an asian grocery and called Yan Yan, and stuck his hands toward the box which was on a high shelf in a cupboard. I saw an opportunity to fulfill a request of a desired reinforcer so I said, "What does Nikko want? I want Yan Yan." How did I know that I would be repeating that phrase, calmly and angrily, for the next half hour while Nikko cried, yelled, thrashed and tantrummed? He would NOT say "I want." He would NOT do what I asked him, demanded him, pleaded him to repeat. 30 minutes is A LONG TIME when it's dragging and your kid is crying/whining. I couldn't give in. He eventually left the kitchen and moved on to explore other things in a huff. I was bent out of shape as well, feeling defeated that he wouldn't give in.

Fifteen minutes later he was looking toward the Yan Yan again. I decided to switch tactics again. The Cheese Puff/Pizza tactic was identifying the object and saying it really fast. This time I tried dramatic singing. Ronin was also in the kitchen and I incorporated his help by having him sing, pointing to him at his turn, then my turn, then Nikko's turn. I would make Nikko look at me, put my hand in the air in a sweeping gesture, and bellow in a low voice that rose almost an octave and then settled halfway at the end, "iiiiiiiiiiii, wAAAAAAAAAAAAAAAAAnt, Yan Yaaaaaaan!" Ronin and I sang a few rounds when Nikko finally sang it back quickly to me. HOORAY! And so he was rewarded. I said this a few days ago, I'll say it again: HOW HARD CAN IT BE????

He challenged me again in the afternoon with a Chuggington DVD. I wanted him to say either I Want or I Watch. It took ten minutes of whining and fighting me, but with a dramatic singing again I got him to say I Want Chuggington. I wish I didn't have to battle my kid to get him to talk. I can see that he wants to communicate ("Open door," "All finished" in reference to the iPod) but when I make a demand/request of him, he shuts down. Maybe he's not confident enough in his vocabulary? This evening he wanted some markers that were shaped like eggs and he managed to say eggs at one point, but he was using another filler-word for markers that I can't even remember how to say. He was terribly frustrated because I refused him these markers (they were leaking) and his crying fit was quite horrible even for his standards. But hey, he eventually moved on, with the help of some chocolate chips. Ha ha.

Med shift?

2011-04-10T23:11:00.004-05:00

No accidents today, but that is only because I watched Nikko like a hawk. Every time he disappeared down the hallway, every time he turned into his room, my head would appear around the corner and I'd ask, "Nikko, want to change your diaper?" I didn't have the PECS diaper picture with me because there's supposed to be one in his room, but he took it into his bed and it's lost within the sheets. He was not fetching the other picture from the kitchen either, so I'd verbally lead him into his room and change him there. Only once did he emerge from Ronin's room with his shirt off and his sweatpants below his hips, about to thumb off his diapers before I came around the corner. A few times he chanted, "Take a bath" as if he soiled his diaper and we should take him into the bathroom.

I just had a thought.

I think I'm going to call the gastro tomorrow and tell her I'd like to switch Nikko back to Miralax. I think the mineral oil could be causing Nikko to feel like something is constantly dripping from his butt, which is TRUE, and that is causing him to have this need to be changed. It's not about getting him on the toilet, because he's not showing an interest in the toilet at all. This leakage is creating a new behavior. I think I'm seeing the same results right now that I saw with the Miralax at the capful level. Thus, I think Nikko is being over-medicated. The gastro made this conclusion at the 3 tablespoon level with mineral oil, but we're reducing his dosage here. Why didn't she do this at the Miralax capful level? As a baseline, why didn't we go backwards from 1/2 capful? Perhaps she wanted to see what lactulose and mineral oil would do. She keeps mentioning the Fletcher's, but Nikko doesn't like the taste of it. Try giving him a teaspoon of that every night. Nope!

Good speech, but bad communication :(

2011-04-09T23:19:00.005-05:00

How about good news first?
4/8/11 School Report - Speech: Good speech day today. He requested songs on his own. He answered "what" questions with field of 4 pictures with 70 accuracy. Good greetings in office & picture naming. HE had good attention at my center today too. Given a category picture - handed it to the correct person pretty independently!

On Friday, Nikko also had a good speech session at private speech (before school). It started out rough because the infamous jar of candy sat atop the reception counter and for the third straight week he was reaching for it and making it his sole focus. When Karen came to get him, he resisted at first. Nikko even looked like a fish on a hook for a minute when he flopped on the floor while she held one arm. Thankfully he stood up and willingly walked away in a whiny huff. I continued to hear his whines for a good ten minutes. After the session Karen told me that he pulled out all the stops at the beginning because he didn't want to cooperate verbally (aka was being lazy, those are my words). One of his shoes had fallen off and he wouldn't say Shoe to get it back from her. Frustrated, he took the shoe off his good foot and put it on the "lost" foot. As if that made things better! But he did end up saying, "Karen, SHOE!" And so she gave it back to him. That is awesome.

Another thing he did was to run to the light switches in defiance when he refused to name what he wanted from a toy closet. Apparently he stood in front of the light switches, put his hand on it, and then looked over his shoulder at Karen to see her reaction. She was stoic. And he couldn't believe she wasn't telling him No or to get away or do something else. Of course he tired of that tactic. It kind of amazes me that she is getting Nikko to respond by not giving in to his demands. Does that even make sense? It sounds really stupid as I typed it. Basically she is getting results because she is not giving in. The thing I find enviable is that he is responding to her, within minutes, whereas here at home it is taking a LONG time for him to respond when he initially doesn't want to. It took 20-30 minutes for him to react and whine with me because he wanted pizza and I wouldn't give it to him unless he said I Want. Same old story. The minute I start to model "I", he rockets into whine mode. We took a break because he ran away and didn't come back for a bit. Later on, perhaps after he forgot about our long requesting session, I tried the Cheese Puff tactic from last week:

"Nikko," I led him to the kitchen counter where the pizza slice was in sight. In a semi-excited voice I pointed to the plate and said, "What is that?"

He looks, and says, "Pizza."

Quickly I said in a muted voice, "Iwantpizza."

Nikko said, "I waaaaaaant...pizza..." and as he drew out the "a" he looked at me as if he knew that I had caught him at the right moment to get him to repeat what I wanted him to say. I immediately praised him and gave him the pizza.

HOW HARD DOES THAT HAVE TO BE????????? Exasperating. Really.

That was probably the only shining moment of our day except for the short reprieve we took in the afternoon to take the kids to the park to play since the weather was exceptional. Nikko woke at 5:30a, opening his door on his own and wandering into the nursery, I took him into our bed to try to get him to sleep more. I don't know why he woke up so abruptly. Basically he was having poop smears, running to Ronin/Audrey's bedroom and ripping off his diaper in an attempt to take it off and possibly clean himself up. He wiped poop onto Audrey's Tinkerbell body pillow (not salvageable), the area carpet (also not salvageable) and then left some random wipes with poop smeared on it in Ronin's bed and the floor. He did this twice in their room. The stench of poop made me want to vomit, especially because I'm sporting a runny nose and coughing today. Temperature. Great. Denis and I cleaned up the messes and bathed him twice, but he managed to escape our sight a few more times today and take off pee diapers, plus one other poop one that was manageable. This behavior is so heartbreaking to me because he cannot seem to communicate what he wants, freely. I have to watch him like a hawk, watch his signals (putting a hand on his butt) and ask him constantly if he wants a diaper change. I found two PECS pictures of a diaper and started enforcing that he give me this picture when he wanted a diaper change. I have to keep putting it in his hand to give back to me, because he is not picking it up of his own free will. I am lamenting this behavior and silently cursing the gastro for not stepping up to help me more. I must rethink my strategy for this; he will be ten years old by the time he develops a regular poop pattern!! ARGH!

Catching up, and gastro follow-up

2011-04-08T02:00:00.003-05:00

Good Lord, I don't know why I'm behind on a few days of posts, but I am. Sorry.

4/5/11 - School report - OT: Some successes today. Tolerated swing for a few minutes with a low arc. Also used "I want" 3 times with verbally cued with visual picture! Also worked on name.
Speech: requesting, greetings, ?'s

4/6/11 - nothing to report

4/7/11 - School report - Speech: Good job naming animals, foods, household items. Tried "What" ?'s.

Early this morning I took Nikko to North Shore University Hospital (aka Glenbrook Hospital) for an x-ray ordered by the gastro. Surprisingly, we didn't have to wait very long at all. A nice man in the waiting room even slipped Nikko a racing car magazine to see if Nikko would be interested in it. I had to point at the pictures but Nikko was able to say Racing Car. When it was our turn, I told the radiologist that Nikko had autism and wasn't good at talking, and would also not be cooperative on the table. She had to hold his legs while I pinned down his torso and arms while yet another radiologist took the x-ray. They got it on the first try, though, and I was relieved.

At the end of the day, the nurse Pam called to tell me that Nikko's x-ray showed a minor blockage that the gastro deemed "normal." She then said that we should try to lower the dosage, maybe by half a tablespoon. I told her I'd lower it and then give it another week to see results. Am I going to do it at 2.5 or even 2 tablespoons? NO. Clearly I have it charted that giving Nikko a higher dosage wasn't reducing the number of times he pooped. I think my results were better at 1.5 tablespoons, quite honestly. When we upped it to two, his smears increased from 3-4 a day to 5-6. So I'm going to try the lesser dosage. I really, REALLY hate how it's taking a long time to deal with these issues. It's a wonder that any potty training can take place at this point, except for maybe a #1. Definitely not for #2s.

Yellow

2011-04-04T11:17:00.003-05:00

Nikko came into the kitchen and pulled at my hand.
"What's up, Nikko?"
"Car?"
"Oh really? What kind of car?"
"Racing car?"
"OK, let's go look for your car in the living room." I am pretty tired from going to bed so late and therefore was on the verge of crabbiness. I don't enjoy looking for the kids' lost toys under couches and in dusty corners, but it has to be done or they'll be lost forever.

After digging through a few bins I say, "Nikko, what color is the car? What color is it?"

He replies, "Yellow car."

"OK! I exclaim, "this helps narrow down our search!" Luckily, I found the car on an eye-level table a few feet away, whereas minutes before I was scouring the toy bins. Nikko was content with my find and I prompted a Thank You Mommy from him.

Why is this exciting? Because Nikko is able to communicate with me that he has a need. Because Nikko understood the question I was asking him, and answered it appropriately. That he knew his car was yellow, even though it was out of his sight.

Slow weekend

2011-04-04T01:36:00.003-05:00

3/31/11 - School Report - Bathroom: Had a loose bowel movement. Brown - with a lot of gas! (On the toilet! Yay!)

4/1/11 - School Report - Speech: Liked singing. Worked on vocab, requesting & ?'s.

Not much to post this weekend. On Saturday we took the kids to an Asian supermarket called Assi International. Our goal was to get Thai basil for a dish, but we ended up exploring the place. The seafood section was HUGE and had the freshest fish, crab and lobster around. Right in front of me were trays of fresh fish and squid. No wonder the place smelled so fishy. There were bins of blue shell crabs making their last, slow crawl of their lives, and a fish tank of lobsters and larger crabs. I liked the place.

Today (Sunday) we had a playdate at Jovy and Max's house. Nikko didn't do a lot of interacting but was able to work around the rooms and didn't pick any fights with Max, who happens to be 18 months old. Unfortunately, Nikko had three poop smears in a row so I'll certainly be calling the gastro's office tomorrow to reiterate what an epic fail we're having with mineral oil.

Unfocus

2011-03-30T23:12:00.003-05:00

3/29/11 School Report - Speech: What ?'s with pictures - good job today. Worked on "no", greetings. Loves singing Brown Bear song & Twinkle.

3/30/11 School Report - General note: Nikko was helper today, with minimal prompting. He said "[name] go play," after a first model. He used "I don't know" on his own twice, too!"
OT: Not a very good session at first. Refusing to say "I want_____" when grabbing for toys. Got very mad. Finally distracted him to another activity. Then worked on drawing & cutting. At end of session, was OK.

I emailed the OT in agreement regarding the I Want. He's been resisting it all week, despite being in a good mood. In fact, the good mood has lasted a long time but is also accompanied by lots of unfocused-ness. It's apparent in all his ABA sessions. Don't know if it happens at school all the time.

I mentioned this "unfocus" to Lisa the ST this morning before Nikko's session and she said that getting OT could really be beneficial to Nikko in this area. He could learn how to self-regulate and/or receive the input that would then help him organize his body to focus and work. I inquired about our summer schedule and she was in agreement that if we had to shuffle/reduce therapies, it would be beneficial to have ST and OT if we could swing it, especially OT. Regarding focus, Lisa pointed out that Nikko needed a lot of sensory breaks, and was probably getting restless from sitting for so long. This makes me think about ABA, where he is required to sit and do drills. He gets breaks in ABA, too, but maybe he's not getting enough breaks in his session. After a while, he may be sitting there and following the drills by rote, can even imitate what's being said, but Lisa questioned how much he is truly LEARNING and retaining. Lisa had an opportunity to be in a room with Nikko and the head of OT at the facility. Lisa pointed out that Nikko was trying to get OT, and the head OT person said the list was long but they'd really try to move on it. I'm glad Lisa pointed out Nikko specifically. When discussing the swing and his aversion to it, the OT said that perhaps it wasn't that he didn't like the swing (since today he actually tried it out and let Lisa push him a bit), but that maybe he wasn't used to being on a swing often and needed more experience and exposure to swings.

I've got to ask Karen on Friday her opinion on the "I Want" stuff.

Lost at Target

2011-03-29T00:45:00.006-05:00

We needed to go to Target today to get groceries and some random file folders so I packed up the three kids for an excursion. It felt great to push the shopping cart with the boys walking on their own right behind me with Audrey in the cart before me. Nikko was dragging his feet looking at things around him but managed to keep up. I turned into the athletic clothing section for a quick browse before heading to the produce aisle while Ronin was darting in between clothing racks. Suddenly I heard a faint whining that was coming over the other side of a partition. I realized that Nikko must have been distracted and didn't see me turn into another section, then discovered that he couldn't find me at all. I called out to him and thought he'd emerge on the other side of the partition, but it extended even further than I thought, blocked by other clothing racks. I could hear Nikko's whine turn into panic so I turned to Ronin and ordered him to stay with Audrey and the cart. I walked quickly off toward the front of the store, calling to Nikko and trying to pinpoint his crying. I saw Nikko dart toward the check-out lanes. He couldn't hear me over his guttural cries so I had to put on the speed and caught him by the coat collar about 30 feet away from the exit. He was teary and red, so I took his hand and gave him some reassuring strokes telling him that he was ok, let's go back to Ronin and Audrey. I was nervous walking back, hoping that no one tried to take my other two kids, and was relieved to see Ronin standing right next to the cart.

*Heavy sigh*
Sometimes I think I have absolutely no business having three kids. It's getting increasingly difficult to take them on a simple grocery trip without negotiating lollipops with Nikko or toys with the other two, and not knowing which kid is going to grace me with a tantrum is like Russian roulette. When I think about the ramifications of this afternoon, I get really mad at myself. Here's Nikko, lost in a store and TOTALLY UNABLE to say his name, or mine for that matter, or call for help. There's 1.5 years of ABA for you. :P He's not a bolter anymore, he was just scared that I was nowhere to be found and probably ran toward the exit because it looked familiar. What if he managed to run out of the store into the parking lot? And to top this all off, I had a two and three-year old that I had to abandon briefly to chase after Nikko. What if Ronin started running after me and got lost as well? What if some sicko saw my situation and decided to take one of my kids while I ran after Nikko? I can't avoid going out in public with all three kids, but the variables that could happen while we are out are starting to paralyze me with fear. I can't always get someone to watch the kids while I go grocery shopping, that's not even the point. I feel like just when things are supposed to be more comfortable with all three kids walking and [at least two of them, not Nikko] talking, something like this happens that pulls the rug out from under me, showing me that I have no business taking three little kids to a store if I can't make sure they are all safe and within eyesight. What really rattles me is that I had to leave two kids behind to chase the third, couldn't even give it a second thought in the moment for fear that Nikko was running somewhere, unable to communicate. Who does that??

Double duty outing

2011-03-28T01:18:00.004-05:00

Today was a busy day from the start. We went to my SIL's house for a family brunch. The kids were excited to play with their cousins and did very well considering they were playing with toys that would not come home with them. I saw Audrey getting very attached to a Woody doll talking to a Jessie doll, but when the time came to relinquish the dolls she said, "Oh, OK." and dropped them easily. Nikko was carrying around two DVD covers and darting from room to room. He was in the kitchen a lot hanging around me to see what I would be eating. When we had to leave, I was relieved that this time he didn't throw a huge fuss when told to say good-bye to the DVDs.

There was a moment when I was putting away something in my backpack when I saw all the kids in the living room, play and chattering with my SIL's in-laws sitting on the couch. I watched Maya and Ronin pushing cars off the table and laughing heartily. I saw Audrey sitting with the dolls making them talk to each other. Rex was also fiddling with a toy that I can't remember. And Nikko was flopping around on the carpet clutching the two DVDs, sometimes looking up at the ceiling and sometimes looking at the kids in action. He was mumbling jibberish the entire time. It bothered me to see Nikko stand out, clearly the oldest and the tallest of the cousins, but acting as if he didn't care about a single soul in the room and making indiscernible vocalizations. For a fleeting moment I wondered what the other people who didn't know Nikko were thinking.

We came home for a short recharge and then headed back out to Atz's place to celebrate the March birthdays. Nikko went back and forth from the upstairs with me to the basement where a few toy houses were. All the kids did well but I think by dinnertime for the adults Nikko was getting cranky. He was playing with the butter dish until I pushed it away from him and that set him off. He tantrummed in the hallway for a few minutes until Atz brought over a Tootsie Roll lollipop that placated him. But prior to that, Nikko was doing his tea kettle whining and I was losing my patience because I was tired, hungry and couldn't figure out what the heck he wanted. I hate that I was getting loud and irritable myself, but thankful that the lollipop was distracting enough. I should have factored in that Nikko could have been tired from a long day (and only one car nap).

Making him talk / THE CLEANSE

2011-03-26T02:19:00.003-05:00

This afternoon I took the kids back to Mom's house for a few hours. She was sending things home to the Philippines and I had given her a slew of girls' baby clothing. Again, Ronin and Audrey took off to play in the basement while Nikko hung around me upstairs, eating peaches. He caught sight of some leftover chocolate (Kit Kat and Twix) and made a beeline for it. This is where I took the opportunity to get him to say "I want candy please." Either myself or Chinny would hold up the chocolate bar and do the prompting. Nikko was furious. He didn't want to say WANT. But we both kept tryin to entice him. Mom was watching and found it painful. I totally sympathize with her outlook because it looks like I'm just being mean to Nikko. But it is very evident to any parent whose child has a speech delay or is non-verbal that if you want your kid to talk, they have to say what you want them to say, and that means holding out on a reinforcer until he says the desired word. Nikko and I battled it out for 20 minutes until he ended up saying WANT. He even had some success with Chinny doing the hold-out. But she and I were in agreement that when Nikko goes to Kindergarten, he will have to ask for things appropriately instead of expect for things to be granted to him. I felt bad that Nikko was using his high-pitched tea kettle screech, plus thrashing and throwing his head back in angst, but it also felt like a big show and I didn't want him to get away with his theatrics. Ultimately I had to calm him down from his frenzy, even speak lowly, and that helped to get a WANT out of him.

One other thing to note tonight.... by the way, ********TMI ALERT*********TMI ALERT******** I told my mom this afternoon that I was distraught about Nikko's mineral oil situation. I just don't know what the next steps would be, beyond lowering his dosage. "It's not supposed to be like this," I recall telling her, referring to his leakage and the constant diaper changes throughout the day. This evening toward the end of dinner I noticed Nikko getting up and leaving the room. When I tracked him down, he was standing next to the speaker stands in the living room, grimacing and straining and obviously having a bowel movement. When I changed his diaper, he had taken a really big dump of a peanut buttery consistency. Strangely, it didn't stink as bad as his poopy diapers have smelled all week long. After changing him, I saw in a few minutes that he didn't finish his business and so I found myself changing him again. This next diaper held another big volume of poop, and I figured out that this must be THE CLEANSE that the gastro mentioned might be backing up in him. There was one other diaper in between this change and the next that had a tiny amount of poop, but the very last diaper before bath time had another big volume of poop but was lighter in color, kind of fibrous, and iffy on the stink factor. Again, my assumption here is that Nikko finally cleaned out his bowels. But if so, then what next? That will be my question for the gastro when I call her, again, on Monday morning.

Who taught him that?

2011-03-25T02:24:00.003-05:00

Spent two hours at Meijer with the kids. I had grocery shopping to do, but in order to ensure success I had to make sure these kids were happy. That's what going to the toy aisle was for. And for the most part, it worked. Sure, they picked up a hot wheels track, a couple of cars, a mini dump truck, a Play Doh ice cream station, and a mini Disney Belle figurine, but I got the shopping done with all three. That's what it takes, for now.

This evening, while Denis was giving Ronin a bath, I had brushed Nikko's teeth and was helping him up the step stool to sit on the toilet. He looked at the yellow cylinder on top of the toilet tank and mumbled something. I pointed to it and asked him what it was.

"Wipes," he stated.

"Good job, Nikko, they're wipes," I replied.

And then he said in his slightly broken, Nikko way, "Clorox disinfecting wipes."

Did I just hear him say that? I was able to get him to repeat it once or twice, then I lost his attention, but I was flabbergasted. Who taught him how to say that?? Did he READ the container? Not likely, but still... I haven't even said "Clorox disinfecting wipes" in an entire sentence in recent memory. I was truly, truly amazed.

ABA/ Juggling

2011-03-24T01:50:00.002-05:00

Yesterday we went to Mom's house for a visit. While Ronin and Audrey trekked downstairs to play with the Thomas trains, Nikko hung out with me and the folks in the dining room. He ate a Cutie orange and a banana, but only because he didn't immediately see the mini-Kit Kats on the speaker table. All the kids behaved rather well and I was glad to give them a change of scenery during their spring break. Nikko's session earlier that morning with Kathy was good except for the usual focus issues and a few unexpected crying fits. She wasn't sure why he burst into tears over something, and seeing him in an angry element seems to take her aback. Kathy remarked that Nikko seemed even bored during some of the drills.

This afternoon, Nikko's therapy session with Rebecca was also deemed good except for an outburst toward the end of the session because he thought they were finished when they really weren't. Rebecca doesn't seem taken aback when Nikko has outbursts, but I can tell she doesn't like them either. Rebecca also voiced whether or not Jenna was coming to evaluate Nikko, and I said she was coming on Monday. Rebecca said she wasn't entirely sure what Nikko "knows" or which drills he has mastered because he doesn't consistently do the things with her that he does with the others. Great.

I am at that pre-summer planning crossroads where I have to figure out what Nikko should do over the summer. He will definitely participate with ESY right after school ends. We are also leaning toward putting Nikko into a day camp 3x/week for 5.5 hours through the NWSRA. I feel more comfortable with that idea because they will have staff trained specifically on autism and how to best deal with Nikko. The hard decisions surround continuing private speech, ABA and possibly adding OT (at the recommendation of Lisa). Of course, this all costs money. So the balancing act begins. I have my calendar printed out, now I need to crunch the numbers and figure out the headache of this planning. And what am I going to do with Ronin and Audrey this summer? I have to consider that if Nikko does back-to-back therapies at Arlington Pediatric Therapy, it will be very unfair for the other two. And can I even put either of them in classes with Nikko's schedule taking priority? The guilt is creeping in fast.

I. Want. Cereal. Please.

2011-03-21T01:24:00.004-05:00

3/18/11 School Report - Speech: "Hi" to people in office. Pictures "is this ___?" Good NO - labels person/object. When YES, Trying to get "Yes." Imitated a few "yes." Worked on turn taking & requesting.

Sorry, am a few days behind. On Saturday night, Denis took me to see Lea Salonga in concert. My parents came over to play w/the kids, give them dinner, then put them to bed. I am deeply indebted to them for their time. My mom missed my kiddos so she enjoyed the interaction, and the kids missed seeing them as well. I texted with Mom throughout the night and found out that Nikko fell asleep for a nap around 6p. This caused him to stay up late. When I walked into the door at 11:30p Nikko came running from the living room to greet me. He seemed energetic and not tired at all. After my parents left I put him to bed and he went willingly. He only slept until 7:30a the next morning [today] and didn't nap all day so I wonder if his sleep tonight will be extremely deep or if he'll wake up late tomorrow morning. This didn't affect his mood all day, surprisingly. I was crabby myself because the concert was at The Venue at The Horseshoe Casino in Hammond, Indiana (right over the Illinois border) and when we walked into the place, I was immediately hit in the face with waves of cigarette smoke. Smoking is banned from many public places in Illinois, but Indiana doesn't have that luxury. By the end of the night my eyes were burning, we both had headaches and I reeked of smoke. My morning started with really dry eyes and a sluggishness that demanded a nap wherever I could fit one in.

Today, Nikko took an interest in sitting at the kitchen table to play Fruit Ninja on the iPod Touch. Ronin has mainly been the iPod hog as of late, showing his mastery of the finger-swiping game as well as others, while Nikko has played Skee Ball from time to time. I watched Nikko use one finger to swipe at the fruit with slow strokes. I took his hand and tried to guide him for a few games but then left him to his own devices. When I checked back with Nikko a few minutes later, I saw that Nikko had modified his playing style and maximized the number of fruit being swiped by using the fingers on both hands to make bear-claw swipes at the fruit. How clever! The only problem is that there are also bombs launched in the air amongst the fruit and the bear-claw swipe doesn't discriminate. Nikko hit a few and lost, but he was generally entertained for a long time with Fruit Ninja.

Backtracking again to Saturday... In the morning during breakfast, Nikko had a small bowl of Yogurt-covered strawberry Cheerios, a new flavor that I love, in addition to Nikko and Audrey. Nikko wanted more cereal and said, "Cereal." Or he'd say "Strawberry cereal." But today [Saturday] I wanted him to say either "I want cereal [please]" or "Want cereal." And so I began the task of modelling the words for him. Nikko caught on that I wanted something from him and he started whining. He chanted "cereal" and got agitated that I didn't give it to him when he said it. I signed "I. Want. Cereal. Please." and verbally prompted him. He didn't want to say WANT. I have no idea why, no idea why he didn't want to repeat a word I was requesting him to say. It irritated me a little bit because I feel that I have become complacent in requiring Nikko to properly request something. I think what motivated me to demand the WANT was the thought that in Kindergarten next year, he will need to ask for things appropriately. I need to require this from Nikko NOW. And so the minutes dragged on with Nikko protesting, demanding CEREAL that I wouldn't give to him without saying WANT or I WANT. We had reached and passed that familiar point of no return where if I gave in to him, my persistence and determination to get the WANT would have been in vain. I couldn't back down.

And finally, he shrieked "WAAAANT!!!"

I praised him for it, asking him to repeat it or a derivation of it again, but I made it clear that I was happy he said what I asked of him. He got his refill of cereal. I wondered how long it would take for him to say it again when the bowl was empty. And so when he finished his bowl, he got up and asked me for cereal.

"I want cereal, please," I said, and began to prompt, "I..."

Nikko quickly and quietly said, "Want...[and then loudly] CEREAL PLEASE!"

That took maybe fifteen seconds instead of fifteen minutes. Good job, Nikko.

Hot Rod

2011-03-18T00:21:00.002-05:00

3/17/11 School Report - OT: Worked with Nikko at centers (cut, glue barn) then pulled Nikko & he did animal walks, trampoline and worked on name & person drawing.

This evening Denis was running out to pick up some food and told Ronin he could come along. Ronin had a purple hot rod car and misplaced it in the flurry of putting on his jacket. Ronin couldn't find it, started getting adamant about bringing it, and was whining, "I want my hot rod caaaaaaar!"

Nikko was sitting at the kitchen table, seemingly oblivious to the melee, but then he turned to Ronin with a green school bus (also considered a hot rod because the green paint was sparkly), gave it to Ronin and said, "Hot rod?"

Ronin looked at it for a few seconds and then said, "Oh, OK."

I was surprised and asked Ronin if he was ok with the bus. Ronin said, "Yeah, it's a hot rod." I was doubly surprised that Nikko showed a brief instance of sympathy for his whining brother. I have seen such a thing happen once before when Audrey was crying over a toy that I've long since forgotten. It's too bad these siblings don't share their toys more often because these flashes of sympathy would greatly improve the positive temperature in our house!

Gastro update

2011-03-16T01:13:00.005-05:00

3/15/11 School Report - Speech: Greetings, association puzzles, where/what ?'s with pictures. Finding teacher pictures [good], no no no teacher names.

I'm still a tad behind on the blog. On Monday (yesterday) I took Nikko to see Dr. Nelson. It has been one month since the last visit. I told her that we've been on the mineral oil only a week so I'm waiting to see a pattern. He had only pee diapers but a poop smear at day's end for three days, and then the poop smears got more solid and increased inconsistently over the weekend. We are down to about four poop smears a day. The doc said that since we weren't at goal yet, we could increase the dosage by a half tablespoon and see what happens. Goal is 1-2 BMs of considerable volume. I had some questions to ask her as well:

Could she remind me what the health concerns were regarding mineral oil? - If ingested incorrectly, like while laying down at night, the oil could get into his lungs. Bad problem.

Can Nikko use probiotics? - Her answer was she doesn't recommend it, but it doesn't bother her either. She said that probiotics aren't really proven to help most kids. She didn't see a difference whether or not a kid used them. NOTE: A tiny red flag waved in the back of my brain. If she doesn't recommend them, then why on my last visit, where we waited half an hour because they were running late so I got bored and rummaged through a cabinet, did I see boxes of Align, a probiotic? If she is a gastro (read: gut) doctor, wouldn't something like probiotics be right up her alley?

What is the plan, once he settles into a regular BM pattern on mineral oil? - Then we stay the course for a couple of months, then wean him off of it while adding fiber back into his diet.

What is the plan if it doesn't work? What is the next thing to try? - She said we would probably tweak his dosage until it worked. I asked if there was something beyond mineral oil and she looked at me saying, "Well, those are the three medicines I use in this practice." I don't think I got as complete an answer I was looking for, but maybe tweaking the dosage was her answer and that's all I got.

In a week I will call her with Nikko's progress, so for now I'll up the dosage and see what happens. I have mixed feelings about mineral oil, but currently I can see that *something* is happening. Nikko's BMs are becoming slightly more formed, sometimes fibrous depending on what he ate, sometimes peanut buttery, but never like a rock. And we have gone down from 10+ smears a day to 3-4 poop smears of varying volume a day. That's progress in a sense. What I wish I didn't have to do is pour 1 1/2 tablespoons of oil into Nikko's juice every morning. My comfort is that the juice is really good-tasting apple juice, and mineral oil is odorless and tasteless. I hope he really doesn't notice the oil floating around in his sippy cup. And yes, I have to give it to him in a sippy because it's enclosed and he can drink from a straw. Giving him meds in an open cup means he can see what's floating around and will most likely reject the drink.

The one thing I'm happy to report is that there are little to no more room-clearing bouts of gassiness.

Enchanted Castle

2011-03-15T02:09:00.003-05:00

On Saturday, we took the kids on a little trip to meet up with a volleyball friend of ours at Enchanted Castle. I know it was a risk because that place is basically sensory overload, but we figured the kids would have fun amid the video games, toddler rides, flashing lights, loud booping noises and families galore. That's basically what we came across. My sister was able to meet up with us and that helped me out a TON. What I thought was neat was the real-life skee ball stations that I pointed out to Nikko. He tugged me toward them, saying Skee Ball, and I tried to teach him how to roll-flick the weighted plastic ball up the lane and end up in a hole. It was so evident that Nikko lacked the muscle strength to roll that ball with one arm. I saw Ronin take a turn and since he's only 3 years old with toothpick arms I didn't expect much. Ronin gave up easily and went on to flashier games. Still, Nikko went back to skee ball twice and seemed to make a connection that this game was the same as the one on my iPod Touch, yet different.

The kids handled all the crazy stimuli pretty well but Ronin was getting a bit hyper. One thing I didn't bank on was the smell of pizza from a nearby table when we stopped for a snack break. Nikko smelled and saw a pizza at the next table and started whining. I was hungry, too, but knew we didn't have the time or the patience to stand in line to order any. I had to distract him with Oreos and lollipops. Finally, removing the kids from that room was the best strategy. Nikko was curious about other video games. I sat with him and tried a Sponge Bob driving game, but other games he was only an observer. Other than that, our experience at Enchanted Castle was a pleasant one for the kids but definitely not an outing I can make going solo.

Two rascals

2011-03-12T00:12:00.003-06:00

3/11/11 School Report - Speech: Greetings in office, where ?s with pictures, great with teacher pix on wall - Is This_____? he would say "no" really loudly - [if] it was the person he would say their name. Did it for 5 teachers and did it for Rnin in the hall by their classroom!
Bathroom: @3:15pm Nikko had gas and pushed for couple of minutes, smeared poop in diaper, sat him on toilet.

A global note: Early this morning there was an earthquake registered at 8.9 that rocked the Pacific near Japan. It spurned tsunami waves that crashed onto Japanese shores and caused hundreds of deaths and lots of destruction. Other neighboring islands were effected by six-foot waves and lots of panic. I saw some of the footage on CNN and it is surreal. From the aerial view it looks like water rolling across fields in slow motion, except this water has houses, boats, cars and debris. The water rolls into cities and you realize that if you were on the ground, this water is moving incredibly fast. Tsunami.

Nikko didn't wake up with a bloody nose today, thankfully. But he still had residual blood crusted in his nose so I took it upon myself to manually get at him with the tissue. He was pretty pissed at me for restraining him and showed it by boycotting breakfast. I honestly think he was mad at me, and it took a while for him to look at me without trepidation. We had speech this morning with Karen and I had to warn her about his coughing. Nikko didn't have a temperature any more and the hacking has gone down enough that I think he can manage in school without getting looks from other kids. He seemed to have a good speech session. The problem wasn't him this morning: it was Audrey and Ronin. They were so excited to see Tyler, the Kindergarten boy that goes to Westbrook that Ronin recognized two times before, that both kiddos started running around and playing chase with Tyler. They were also getting noisy, plus there were more parents and kids coming into this small lobby to wait for their therapists. I was getting super annoyed at my kids, trying to reign them in, shush them, threaten that they wouldn't get lollipops. I could not believe that Audrey was being ornery when I sat her on my lap. She only wanted to get down and play. Same with Ronin. In retrospect, I shouldn't blame them for feeling cooped up and wanting to release their energy. But this morning I was truly at a lost on how to discipline one's children in public, when they are clearly being naughty. Doing 1-2-3 would have been laughable because since they were both orbiting Tyler, one would be wreaking havoc while I'd wrestle with the other to sit still. Let's just say I need to find a better lure for my youngest two.

Nikko went to school, came home, had ABA with Rebecca. Things went smoothly overall. Rebecca noted that Nikko was getting very hooked on one reinforcer when asked to do a drill, and was not responding to other reinforcers. I guess I'll have to dig around for more toys that Nikko will truly want during sessions. Finally, this evening I went to a Bollywood dancing class with Atz. It was good to get away for just a little while. Nikko was having a bath when I came home, and Ronin was still awake but set for la la land.

Home again today

2011-03-11T01:09:00.004-06:00

Today was Mineral Oil Day 3. No poop, just a smear at the beginning of the day. I wonder if Nikko will poop tomorrow. I have to factor in that he was not 100% today, still had such a low temperature that I wanted to ship him off to school. It was the persistent cough and runny/bloody nose that were red flags telling me it wasn't a good idea yet. This evening I gave him some cough suppressant so that he'll sleep comfortably, and we sprayed saline into his nostrils against his will to help moisten those tissues. Nikko is sleeping very soundly because he didn't nap all day. I hope he wakes up with no temperature and a clean (read: not bloody) nose.

Sick? Really?

2011-03-09T00:52:00.004-06:00

3/8/11 School Report - OT: Doing animal obstacle course several times - needed less cueing after several reps. At table - started vocalizing when started animal drawing and name printing. Stopped when did dot art fish paper. Vocalizations were definitely during non-preferred tasks.
Bathroom: Nikko was lethargic today and coughed quite a bit.

Last night around 1a I heard a barking cough coming from the bedrooms. I was at the computer and listened. It was coming from Nikko. It sounded like the kind of wet cough that Ronin makes when his airways are getting worse. I checked on Nikko and while his legs were hot, his head was not. I had to change his diaper before I went to bed. Around 4:45a I heard him crying so I got up and went into his room. He sat up, irritable, then crawled out of bed and waited for me in the hallway. I debated bringing him to our bed but thought he wouldn't fall back asleep right away. He'd probably lay there and babble, and maybe squirm around a lot. Instead, I ushered him to the living room couch and let him lay in his corner while I sat next to him. We both drifted into sleep again, as I woke up at 5:45a to see him sleeping and I shifted my position on the couch a little.

This morning he was walking/babbling and moving about like his regular self. He even had a session with Kathy this morning and did well, very focused. The school nurse called this morning and asked if Nikko was for sure going to be at school today because he was having a hearing test with an audiologist and that person was driving in. I said he was coughing last night, but didn't have a temp or fever this morning at all. So I sent him to school as usual. It wasn't until I was driving home from Target with Audrey sleeping in the back that the school nurse called and said that Nikko was reportedly putting his head down on his desk and falling asleep, and had a 101.9 fever. Oy. I had to go pick him up (and Audrey was dead weight while I carried her slumped on my shoulder into the school office). Nikko's neck felt hot but he wasn't whining or acting terribly out of sorts to me. At home, after a snack, he got tired and I put him on the couch for a short nap. He felt warmer to me so I gave him acetaminophen. He won't go to school tomorrow, I cancelled his morning speech session with Lisa, and I'll have to cancel Rebecca tomorrow just to be safe. I hate for Nikko to miss school, especially during this period of good moods and progress in speech. It can't be helped.

Today was also Mineral Oil Day 1. I put it in his morning apple juice and saw the oil separate right at the top. Here I thought that oil would be heavier than water and would sink to the bottom, easier to slurp up. WRONG! Where the heck was I in science class? I don't know how much mineral oil he actually ingested. I will try again tomorrow, but put less juice in his cup so that he'll finish the first round and then require a fuller refill. If that doesn't work, I'll try the chocolate syrup mixed with oil, a 1:1. I hope that works. I hope the mineral oil doesn't interfere with Nikko being sick right now. I also wonder when I'll see the oil take its effects on Nikko.

Mineral Oil

2011-03-08T01:21:00.002-06:00

I called the gastro today with the intention of halting the lactulose. The pattern over the past three weeks has been inconsistent at best, but a weak pattern showing is 3-4 days with only a poop smear in the before-bath diaper, and only pee diapers during the day. Over the weekend Nikko got on an hourly poop smear change-fest again, perhaps expelling everything that was backed up in INCREMENTS, and then today he went back to longer hours with just pee diapers. Even if the pattern improved, the deal breaker is the gassiness. I can imagine Nikko becoming the brunt of jokes and being stigmatized socially. It's not the direction I want for him, so when the gastro called me back I told her that we need another option. She said, "Well, we can either go back to miralax at maybe a 3/4 capful or try mineral oil." I really felt deflated because I don't think Nikko will take the mineral oil. She said it can be mixed with yogurt or ice cream, or even chocolate syrup because they are oil-based foods. Gotta mix oil with oil. I still don't think Nikko will ingest it because he doesn't love yogurt, I can't give him ice cream every day without him getting fat or the other two kids wanting it every day, too, and MAYBE the chocolate syrup will fly but I don't know about the consistency. She told me about the effects of mineral oil, and even warned me that if not given to him properly then he could get sick from it. It slides down the intestines and helps the poop retain its water because the poop is coated in mineral oil, thus coming out easier. And there's the possibility of some leakage since it's an oil...

The gastro told me to make an appointment to see her next week. I plan to, and to try one more time to discuss what the bigger picture in helping Nikko is supposed to be.

Busy Saturday

2011-03-07T01:34:00.002-06:00

Yesterday we had a busy day. We went to the River Trails Nature Center to hang out for a bit. The weather was decent but not dry enough to play outside, so the kids enjoyed looking at the turtles, water snakes, squirrels, birds, owls and stuffed animal heads. We also spent some time in the recreation room, which is always a great place to take the kids on a rainy day. For lunch we went to a hot dog place called Photos. Nikko had a grilled cheese sandwich but later focused mainly on his fries. We stopped by Target on the way home and I picked up a Kitchenaid toaster over. We've been in the market for one because it's such a pain to fire up the oven and cook batches that are too big. The microwave makes reheating a soggy mess. Our fish sticks won't stand a chance if they cannot be ingested as leftovers. We came home and Ronin took a nap while Audrey proceeded to act like a she-devil. And the entire day, Nikko had poop smears. Some were fibrous, some were a tad watery,but all in all I am still at a loss because there isn't a consistent force that's driving all of Nikko's needs. And almost the same thing happened today with almost no reprieve from diaper changing. I am going to call the gastro's office tomorrow because the gassiness that Nikko passes is just plain awful. Can't stand it.

In other quick news, I got a short burst of Alog speed and decided that some clutter really has to go. I think you call it a work in progress. I cleared some space in the kitchen due to the toaster oven, but the piles in every single room need some cutting down.

Naming, PD and Poop

2011-03-04T23:56:00.002-06:00

3/4/11 School Report - Speech: Requesting animals for puzzle. Requested singing Twinkle. Greetings in office. Teacher pix are posted. We looked for each of his teachers & therapists. "Is this Mrs. McCarthy - No Mrs. McCarthy" for 5 or 6, then found it and he would say "Mrs. McCarthy!" for correct one. He picked it up pretty quickly. Nikko is also ding a good jov making choices. If offered Do you want red or green? He will choose rather than repeat both options.

Nikko really wanted to play with Play-Doh this morning before going to speech and there was just enough time for me to let them play. It wasn't without me stressing about being on time, though. When we arrived, the parking spaces at our entrance were filled and I really didn't want to walk a long way in the drizzle today. I drove around to the front of the building and found a space there, but we had to trek through the APT hallways to get back to the waiting lobby. Nikko seemed to have a good speech session with Karen this morning. She had a puppy board game that he really wanted to play and he requested it often. She also told me that when she tried to get more motion out of him regarding the sled/sleigh, he would say NO. No no no! That is great to me, because he has never told me NO straight up. I always get the whining version. Nikko is also still doing the headphones with Karen.

As we were leaving speech, I could smell a poopy diaper. We went to the bathroom to change Nikko and it was a partically smear (read: dry flecks. He had been sitting in it for a while.). It wasn't something I wanted him to sit in on the way home. After lunch, he smelled again so I changed another poopy diaper, this time it was more the consistency of peanut butter. It had a tiny bit more volume and was honestly the best poop I have seen from him in a week. The boys went off to school and when he came back, he had three more smear incidents His last BM in his diaper was peanut butter again, which looked great. Ha ha ha, talking about poop looking great! I must be a mom. :/

Play-Doh

2011-03-04T01:14:00.002-06:00

3/3/11 School Report - Speech: During shelter in place drill downstairs Nikko kept saying "Good job." He did a good job! Speech time - Great job naming home vocab & foods - every time he didn't know one he said "I don't know" & shook his head & LOOKED at me to tell him. We played with the dollhouse and he did nice job moving people around to take bath, walk, watch tv, sleep, eat, go potty.

Today when we went downstairs for a short moment, Nikko came up to me saying, "Bouncy house." I really didn't want to assemble it and then disassemble it in ten minutes so I refused him. Nikko had himself an all-out wail fest. There were lots of tears, too, but I was unwavering. What I did decide, to placate him, was to have the kids play Play-Doh. Audrey and Ronin played it yesterday for a half hour of happiness. So before lunch I set it all up again, this time using the birthday cake play-doh machine properly. It formed little cupcakes that Nikko coveted. Thankfully, he understood that he couldn't take the cupcakes all over the place with him, so when it was clean-up time I opened a sandwich bag and started putting his cupcakes in it. He complied, and to me that was a small battle won.

Right when the boys came home from school and set foot into the kitchen, Nikko was eagerly asking for play-doh. Jovy was going to come over, too, so I knew we would entertain with the clay, but I wanted Nikko to eat snack first. I said, "First snack, then play-doh." Nikko repeated what I said, but he suddenly became very unhappy that he didn't get play-doh first and he again erupted into a wail-fest. Twice in one day is a lot for him! Despite the lure of cheese puffs, the play-doh won out and he wasn't content until I opened that bag of clay cupcakes again. After a half-hour or more, I was able to shuffle him away from the table by turning up WALL-E on the DVD player and enticing him with fun activity with the other kids. Play-doh is fine (or I am learning to accept using it in the house, but my rule is that it stays in the kitchen), but I don't want Nikko's rigidity or novelty want to increase the desire to carry it around like his other toys.

Good speech / Thoughts on K

2011-03-02T23:00:00.006-06:00

3/2/11 School Report - OT: Swing -stayed on a little bit. Then did trampoline, scooterboard & animal walks. Took drawing & cutting samples and worked on printing name. Made "N" independently a couple of times.

I forgot to mention that yesterday, when Nikko was getting strapped into his seat on the bus, he was looking out the window right at me and I could see his mouth making a big circle as if to say "Byyyeee Mooooom!" And I think he really did say that because the aide who was strapping him in looked up at me with a smile to see if I was looking. I waved back in acknowledgement and I got the warm fuzzies because Nikko has never independently said Bye Mom on the bus before. :)

Nikko had a good speech session today with Lisa. She said that she heard more spontaneous speech coming from him during their play. We went home and the boys (both of them, despite Ronin's wheezy breathing) went to school. I then took Audrey with me to return a DVD and books at the NSSEO, to register her for pre-K in the fall, and to Target to get a bunch of foodstuff. Denis came home early, too. When the boys came home, I quickly fed them snack and then told them I had to go to a meeting. I prepped Nikko by saying, "Nikko, Mommy has to go to a meeting. I'll be right back, OK? I'll be right back. I'll see you later, Nikko! I'll see you later!" I smiled the whole time and got down onto his level to say all those things. Nikko accepted my speech and said, "Byyyeeee, Mommy!" When that happens, I know that he's not going to be upset by my leaving. I don't surprise him anymore by sneaking out; that's just bad news waiting to happen, and I also don't think it's kind.

I met with Nikko's teachers to continue talking about Kindergarten. My concerns were whether or not the curriculum he'd be working on would be modified or standard? They said that his K work would be modified to his level so he can accomplish it, and he'd be working with a classroom aide to get things (or parts of things) done. Another concern was the level of communication between parents and teachers. I have talked to a few other moms about Kindergarten and they all said that the communication is not good. Whereas Nikko has a great teacher environment right now because they can all talk to each other in the same room, in K the teachers are spread out. They meet monthly to talk about their SN students, so that's a comfort. One of the teachers had daily progress reports similar to Margie's. I would really prefer that kind of communication, so I'll have to work it out with whatever teacher is going to be in his ESP classroom. A lot of things will be hammered out in the IEP meeting in April. I really look forward to the information I'm going to be getting to prep myself for that meeting! We also talked about Nikko being eligible for ESY again this summer, but this time it's at Lions Park. Of course I'd prefer it to be at Fairview, but I think they alternate schools each summer. I'm going to have to move Nikko's speech sessions around when that starts. There's a lot of things I have to mull over as well regarding Nikko's summer ESY session, possible day camp through the NWSRA, what to do with Ronin and what to do with Audrey. Everything revolves around Nikko's schedule, but I have to make the other kids' summer a nice one, too.

Random things

2011-03-02T01:22:00.004-06:00

3/2/11 School Report - Speech: Linda Hoeck is coming to Nikko's annual review! Good job naming things in room. Likes to go to lounge and name food in fridge. Greetings. I am hearing more spontaneous words attached to an activity. I had ball - I wanted him to request but he said "throw" "catch" "ball". Working with water on & off, cold, requesting, etc. He saw a carrot. I said "Yuck" - He said "Yucky carrot", liked it so kept saying it. Imitated most phrases well today while working. Good job naming animals during group today, too.

Nikko had a good session with Kathy today. She didn't really go into details and I didn't hear any protests or crying. That was really it regarding therapies today. Did I mention that yesterday I gave the boys haircuts? I was using a rechargeable clipper that I got from Costco, and lately the charge has begun to shrink. I finished Nikko's hair and barely got started on Ronin's when the clippers died. I waited at five minute increments to get some juice going, but ended up using scissors on Ronin's hair. Then I went on amazon.com and ordered real plug-in-the-wall clippers and attachments. Geez. Today I marvelled at Nikko's haircut and wonder why I wait so long in between. He looks so cute! And I can't resist rubbing that buzzed head of his.

The front console of our portable dishwasher stopped working AGAIN after only six months since the last repair. Denis contacted the manufacturer and today a guy named Frank came to check it out, order a part and then came back in the late afternoon to install it. Nikko came home from school when the guy was here and he did a good job of watching from the kitchen table, sitting next to me. I even gave him the iPod Touch so he could play some skee ball. That in of itself is a new, cool thing I found out; his ABA therapists sometimes used their iPhones to entice Nikko to the next drill, and one of them (Jenna?) taught Nikko how to use the skee ball app. He easily flicks his thumb up the lane, and even hits the MORE button when the game is over. It's easier than teaching him Angry Birds. In Nikko's backpack I took out an art project. It was yellow yarn and a fork glued to a paper plate with red paint drizzled over it and three peach pom poms on it. Spaghetti and meatballs! Nikko started chanting "Cold spaghetti, yummy yummy!" which is from The Wiggles. It's really a neat looking project and I'm glad he has some ownership over it.

Last thing: two teaspoons of lactulose a day are not making me feel very secure. He didn't poop the entire day, but had a slightly shred-like smear at bath time. A little more volume than a smear, but not enough to be a small BM, in my opinion. I'll give it the week and see if there's a pattern to be had.

Helping him along

2011-02-28T01:56:00.004-06:00

I had to use the suppository. :( Nikko hadn't had a proper BM in 3.5 days. I saw him straining behind a chair. When Nikko saw me bring over the big jar of Vaseline he immediately started to whimper and cry. Poor boy. But I only used half a tablet and I was quick. It was Nikko who seemed to take FOREVER to push something out. I think he didn't push a darn thing out for over half an hour. And when he did, three times, I wasn't crazy with the results. He didn't have one massive, expelling BM. Instead, it was three medium ones with mixtures of soft and liquid poop, each not at a great volume. So now that I've reset the poop clock, I'll have to watch and see how long it takes Nikko to get backed up again. Is that lactulose even helping?? Saturday was the suppository. Today he had somewhat of a "regular" BM but man it stunk up to high heaven. It (and the small BM after it) was/were FOUL. I'll give it another two days of charting before calling the gastro for plan B.

In other news today, Audrey was a complete and irritable brat from the moment she woke up. Ronin wasn't that cheery either. That leaves Nikko with the sunniest disposition of the three. He didn't give me any problems today. I'll count my blessings on that one!

Emerging No's

2011-02-26T00:51:00.007-06:00

2/23/11 - When handing off Nikki to Lisa this morning [at speech], he took her hand easily. When I got down to his level, he said, "bye mommy!" Lisa and I both praised him for that.

2/25/11 School Report - Speech: Naming things in building, kids names, request by color: red car, etc.

Nikko had speech this morning with Karen. While we waited in the lobby, a little boy named Alex (with his grandmother?) had a bag full of toy cars and shared them unselfishly with Ronin and Audrey. They all played nicely with each other, lining them up in the middle of the room, even cleaning them up and understanding that (with reminders from me) they would not be able to take home Alex's cars. What was great about this was later at night, at the in-law's, I was able to remind Ronin about what a good sharer Alex was, and that Ronin could be like Alex and share his toys with Rex. He did.

As for Nikko's session, it was a good one. He put together a puzzle and was able to easily identify the objects on each puzzle piece. Karen did some verbal prompting but tried to encourage Nikko to use his words for things. Last week, I could hear him crying and protesting up a storm because he didn't want to play with a sleigh and she tried to get him to say No Sleigh! This week I could hear him cry again, but not for nearly as long a period as before, and Karen said she was able to get a No Sleigh out of him much quicker. Progress!

The kids had school and then we went to the in-law's for dinner. Nikko has been carrying around a plastic chocolate ice cream cone, burp cloth and two fish (blue and orange) for a few days now. He brought them tonight and ended up getting into skirmishes with Rex because Rex wanted the fish too. I saw a few instances where Rex was chasing down Nikko for a fish, and vice versa. Unfortunately, I had to intervene on several occasions because Rex needed to know that Nikko would be unrelenting in pursuing his fish back. Rex would lose every time. I tried to redirect Rex from Nikko once, but in the end I broke up one bad tugging skirmish at the top of the stairs and then there were no more fish fights.

Note to add: Today was day three of Nikko not pooping. I called the gastro's office and they told me to increase his dosage to two teaspoons of Lactulose twice a day. It was at one and a half. I asked them if I should unplug him now, even though he is not straining, or wait until he is straining to unplug him [with a suppository]. They told me to wait until he is straining because if I unplug him and he is not straining, then the suppository will only get the stuff out right near the bottom while he might have more poop higher up in the intestines. Gee, fun stuff. So I'm hoping that tomorrow, with the increased dosage, Nikko will strain hard enough to actually pass his bowel movement and I won't have to resort to the suppository. I have not caught him straining per se, but tomorrow since he'll be home all day I'll have the chance to keep an eagle eye on him. I have seen him leaning over a bookcase, but if I see it tomorrow with no result then I will help him push things along.

Good day for Nikko

2011-02-23T01:26:00.004-06:00

2/22/11 - School Report - OT: Doing lots of altering and body awareness activities. Worked on person drawing at wipe off board. At table - worked with mini chalkboard, printing letters in first name - still very challenging.
Speech: I went with Nikko for vision screening with NSSEO vision therapist. He was sad to leave the room. Cried, said "Oh no." Sat nicely & did a good job! Named Ernie puppet. Did close & distance naming square, house-shape and circle! At one point said "ready to go?"

Either Nikko can recognize the letters of his name OR he knows how to spell it by rote. On a piece of paper today I was writing out his name, pointing to each letter. N-I-K-K, what comes next? He said, "Oh!" I'll try it again tomorrow. The concept of letter is becoming very important for me to show to Nikko as of late.

He had a great session with Kathy today. She told me it was his best one ever. He was very focused, too. No complaints = a good session! I think Kathy is his favorite of the three right now, since he's always chanting, "Kappy coming to play."

I had more interaction with Nikko today. He sat by me a lot, gave me lots of eye contact and keeps asking me/baiting me to play tickle games with him. He'd purposefully say, "LOLL-EE-POP!" and then he knows I will say, "No more lollipop, only....tickles!"

As for his bowel movements, I'm tracking them on a daily chart so I can see if a pattern emerges. I called the gastro for our week follow-up and agreed that we should give the lactulose a little longer, to see if a pattern emerges. What I am watching for is more consistency in the hardness of his poo. It's been slightly firmer, peanut buttery as I mentioned yesterday. This morning he had a BM that had some solid pieces, but also watery stuff. No other poopy diapers during the day. That's not great. I wonder if tomorrow will herald more poop, and hopefully it will happen before we go to speech therapy. I wonder if one big blow-out poopy diaper a day is what we're going to get. Hopefully nothing's getting impacted again, but I really need a few more days to see what happens. I think 1-2 poops are considered "normal."

Constipation alert / Birthday Party

2011-02-21T01:31:00.004-06:00

********TMI ALERT************
I thought we were in the clear without the miralax. It's been five days off of it and Nikko's poops were becoming the consistency of peanut butter again. The poopy diapers had whittled down to 3-4 a day.

Until today.

Nikko had two diapers that had poop smears, the first one being barely any, the second one at the end of the day being peanut buttery but not a big amount. He had mostly wet diapers today. That's not a good sign right now. It could mean he is compacting the poop and could get backed up. He's still on 2 teaspoons Lactulose a day, so I'm hoping that will help push the BMs along, like the one that produced the last poop diaper tonight. But Nikko also seemed to have gas, and possibly some cramping today. I saw it. I'll describe it in a minute, but the fact that these side effects are happening isn't sitting well with me.

OK, back to our regularly scheduled program.

I took Nikko to a birthday party for his classmate Timmy. It was at the YMCA and it was really busy. The party took place in a gym upstairs with two party rooms, a rock wall (we didn't use that) and a huge tunnel/climbing/slide apparatus. Nikko loved it, even though he initially got stuck and wailed for me so I had to help fish him out. After that, he was all over it. When we first arrived, I noticed that the parents just dropped off their kids and left. The hosts were friendly and the dad told me if I wanted to leave I could certainly come back later. I then explained that Nikko had autism and because he had speech challenges it would probably be better for him if I stayed. The dad was cool with it, and was very friendly to everyone. He even treated Nikko just like one of the boys. I was able to talk to Tommy's mom at length, because she stayed for a bit. When it was time to have pizza, Nikko was pretty hungry and seemed to fit silently at the table. The other boys around him were very chatty At one point I thought I smelled Nikko pass some gas so I tried to subtly check him. He was dry. Then he moved from sitting to hovering over the side of his chair, bent over. I think that he might have had a cramp at this point because he uttered a moan and then his eyes filled with tears. At that same moment, Timmy's dad had walked by and noticed but remarked jokingly about something. Nikko looked like he had a bout of pain, but then the moment passed and he sat down to finish eating. They distributed cupcakes and Nikko ate the chocolate frosting on his. Nikko was eager to get back to the climbing apparatus so I let him. He had shed his socks and then later shed the band-aid that was protecting his heel. All in all, Nikko had a fun time in a gross motor kind of way. However, he didn't interact with any kids. They swarmed around him, some said Hi to him, but Nikko was obviously on his own. It made me sad to see him oblivious to all the kids. He was like the loner kid at a party, or at the playground, or really... anywhere.

I hoped that Nikko's activity would make him tired, but he didn't nap. He went to bed and then around 1a he had a nosebleed. I heard him cough and something about the cough made me go check on him. Sure enough, there was blood dripping from his nose. I wonder what is causing it besides the dry humidity and temperature changes around here.

Lactulose, 2 days

2011-02-18T00:34:00.004-06:00

2/16/11 - School report - OT: Good session. Did lots of alerting, movement and deep pressure inputs. then worked on name printing at wipe off board, cutting and drawing at table. Less vocalizations today.
Speech: It's a______, household items, verbs, requesting, verbs.

Wednesdays are our long days. It was also my birthday on the 16th. I had a packed schedule: Speech, home for kids' lunch, then off to mom's house w/Audrey for real lunch, then home before the boys, then ABA w/Rebecca, and finally dinner with everyone. It ended up being a calm day, but a little harried when getting to Speech. Because we arrived just on time, the parking lot was full and we had to trek a ways down the business complex parking lot. Nikko had a good session with Lisa, but was upset when he came back into the lobby and we weren't there. We were in the bathroom changing Audrey's diaper. I heard crying from behind the door and let them in. I guess a change in the routine really upset Nikko, go figure. He was able to sing happy birthday in unison with his siblings at some point during the day. I don't think he napped at all, so he must have been tired by day's end. Rebecca said his session was good, but he's still testing her.

2/17/11 School Report - Bathroom: Nikko had loud and foul smelling gas today. He had a small amount of soft poop. He cried and bent over while on the toilet. It seems like his stomach was very crampy.
Speech: I took him after the bathroom - so was not happy. Crying, screaming. He finally calmed down by singing. Good job with food vocab. 1-step directions.

Ugh.

That was, unfortunately, disturbing to read. I wonder if it was the Lactulose. It's totally possible, and since we have a four-day weekend (School Improvement Day on Friday, no school Mondays) I'll be observing Nikko closely. I remember how he passed gas two days ago and it was horribly stinky, the worst I had ever smelled, and it lingered. The part that makes me worry is the crying due to possible cramping. Definitely listed side effects of the Lactulose.

But...

At lunchtime Nikko decided to eat the Tortorice's pizza from last night. I have to scape off the top layer of cheese, onion and ground beef, and he'll eat it with just the sauce. Maddening, because that pizza is my favorite and not cheap. After I cut him off, after three adult-sized pieces, I had some for myself WITH the toppings. Nikko accosted me at the kitchen table and obviously wanted more. I cut him a small, bite-sized piece and gave it to him. I noted that I gave him a piece with the cheese on top. Nikko really hasn't had a large amount of dairy in a long time, since we started miralaxing his juice last summer. So a small part of me wonders if his reaction today was to the cheese. Well, maybe it's unfounded since he has cheese sandwiches often. Maybe he ate too much pizza. Maybe I'm just hoping it's not the Lactulose. Geez.

Sick (me)

2011-02-14T22:55:00.003-06:00

I felt the beginnings of a sore throat last night. I went to bed with a headache, too. For the first time in ages, none of the kids woke up in the middle of the night. However, I proceeded to wake up at each hour of the night because my throat hurt so badly. I think the opening in the back is swollen and when I lie on my back in bed, the tissues get blocked. I had to lie on my side, but I kept waking up and that irritated me so much. I have a temperature and the chills, and I slept so poorly. My parents were going to come watch the kids while I took Nikko to the gastro this afternoon, but Denis kindly decided to work from home today. It was Valentine's Day. He took the kids downstairs to play after breakfast so that I could catch some zzzzz's in the living room upstairs. And when I took Nikko to the gastro, he stayed with the other two. It was a relief for me that he was around, and I am grateful. :)

We arrived on time for our appointment but the gastro was running at least a half hour late. When she finally came in to review our records, she noted that with me changing Nikko's diapers 8-10 times a day (literally from 9-10a until 7p, sometimes twice an hour), she said that it looks like the miralax isn't working for him and that he's not at the state she'd like him to be. That state, when I asked, is having 1-2 bowel movements a day, with sizable poops, not necessarily formed but liquid is ok, too. On the miralax, he was going too frequently and subsequently that's why she said it's not working for him. (Note to add: when using lesser doses of miralax, e.g. 1/2 or 1/4 capfuls, he would become constipated over the course of a few days and then I'd see him struggling to pass a bowel movement. That's when I'd have to use a suppository.) The doctor gave me two choices: mineral oil or lactulose (generlac). The mineral oil was syrupy and she asked if he'd drink something like that, maybe with chocolate syrup or with yogurt. I said no, because his tastes shift so often. She opted for the lactulose, at about 2 teaspoons a day to start. She said we need to start somewhere, to form a baseline, so at the end of the week I should call her office to see how it's working and then we can tweak the dosage for the rest of the month. Nikko ate many lollipops in the office and got whiny when the nurse took us to get his weight and height measurements. He also whined when the doc put the stethoscope to his chest and poked at his tummy. Overall, however, Nikko was a champ.

Warnings

2011-02-12T00:07:00.005-06:00

2/11/11 - School Report - Speech: Worked on household vocab. Very imitative today. Said "I don't know" on his own 2x. Requested "Twinkle" again. We were looking in the mirror and I was trying to get him to say Nikko & Ms. Winters. He imitate Nikko. I said Ms... he said "Kathy!" Too funny. Worked on boy parts, greetings, I see a____. For love item he said "Bow Wow" when I asked the name!

I got a call from Nikko's teacher giving me a heads up that before Nikko got on the bus going home, he had a big blowout in his diaper. They pulled him from the line to quickly change him, and he got upset. This was probably because he didn't understand why he wasn't being put on the bus right away. They were just warning me in case Nikko was still mad when he got home. The bus arrived (it's been arriving ten minutes later than usual because the original bus was in for repairs and this older bus doesn't have five-point harnesses. Instead the straps are over the shoulders and takes more time to buckle in) and Nikko was fine. His eyes portrayed that there were some possible tears but overall he was happy. Nikko has been treading carefully on the pavement lately, avoiding the icy patches and opting to hop from one dry cement patch to another. Safe boy.

This evening I was picked up by Patrick and Jovy and went to see Rory's school play where she had a lead part and a solo. I had prepped Audrey and Ronin about going to the in-law's house to celebrate a birthday and play with their cousins, and luckily they both adapted to my mentioning not being with them tonight. However, Nikko seemed to only hear key words such as "Going. Later. Nice night. Have fun." That all meant the same thing: MOMMY IS LEAVING ME. He was not a happy camper and erupted into tears, trying to put on his socks faster than I could put on my boots. I still walked out the door but knew they would all be all right. When we returned three hours later, we pulled into the driveway right behind the returning Pilot. Everyone was happy to see that I was there, and I aptly put the kids down to bed.

Tiring day?

2011-02-11T01:01:00.002-06:00

2/11/11 - School Report: Speech - Greetings in office. He requested Row Row Boat on his own. After I said "What do you want to sing" he said "Twinkle." Used books for verbs & vocab.

Sarah came for ABA this morning. She told me that he sat at the table the entire session (excluding breaks) after initially refusing to go. A bit unfocused but she was mostly relieved that Nikko stayed at the table to work. The rest of the day was largely uneventful, with the boys going to school and me taking Audrey to the dermatologist, then Jewel, then Costco. Nikko started swim lessons again tonight at the Wheeling Park District through the NWSRA. He could have been tired after swim class because he wasn't very animated when he came home. It was, after all, a very long day.

A better Rebecca day / Ronin's 2nd meltdown

2011-02-10T00:55:00.007-06:00

2/9/11 School Report - OT: Sensory motor activities - trampoline, knee walking, scooterboard. Then worked on name printing at large wipe off board. At table - worked on v-day card.

This morning we bundled up and went to speech with Lisa. Nikko really enjoys going there. I mused it over with Denis last night and perhaps he benefits more from the change of scenery. It's really colorful and fun at APT. This makes me wonder if our ABA sessions are at a disadvantage because they take place in the home, because they are always in the basement, and because the setting is so familiar it is not as engaging. Possibly. The thought gives me some pause. His session went well. Lisa says that Nikko can say my name (Mommy, or Boppy) during questions. She'll say, "Who are we going to see?" And he'll say, "Mommy!" Lisa is using leading questions without saying the word that she wants him to say, so it's like he is answering direct questions.

I didn't have enough time to cook Ronin's crispy fish sticks before the kids had to run off to school so I stopped by McDonald's. The kids' Happy Meals were the 4 piece nuggets, fries and apple juice boxes. The toys were perfect this time around: Monster trucks for the boys, and My Little Pony for Audrey. Nikko liked his red truck and took it to school. The afternoon flew by, and Rebecca was here right as Nikko's bus pulled up to the house. He had a quick snack and diaper change before heading downstairs. Rebecca noted that Nikko saw her as he got off the bus and he didn't look thrilled. I wanted to counter that with something positive, but when we all stepped into the house Nikko hesitated in the doorway, looked at Rebecca, and then verbally protested for a minute with a whine. Thankfully he kept moving forward and he was able to go downstairs without incident.

The session seemed to go well. I didn't hear any meltdowns or protests. Rebecca came up to tell me that he did a much better job than last time, that he sat at the table the whole time and did his drills. The focus was better today. And when it was time for her to leave, I said to Nikko, "Nikko, what do we say....?" He looked over his shoulder at Rebecca and said, "Bye, Rebecca." That was really cool because I didn't prompt him verbally by saying, "Nikko, say Bye Rebecca." Instead, he said it on his own, in context. These little glimmers of verbal interaction are also present during both Lisa and Karen's sessions. I wonder if he interacts verbally at school as well or if he gets prompted. I wonder if he speaks during class at all.

This evening, right before bath time, Ronin had another meltdown similar to the one he had two weeks ago. In fact, after the first meltdown it prompted me to dig into a book I bought as a recommendation from the school parenting group called Raising Your Spirited Child. Yes, I got another volume about raising such a spirit, but this was a pretty thick book and the advice I've read thus far is helpful in that it puts things into perspective easily. Sure, Ronin may have sensitivities, but the book gives some tips on how to help deal with these meltdowns in a positive way. Of course, yelling and/or hitting/spanking is not advised. Duh.

Ronin was a bit hyperactive before bath time, running around a lot as usual. He let me brush his teeth. But when it was time to take off his clothes and either use the potty or get into the tub, Ronin suddenly became very defiant. I switched with Denis so that I was brushing Nikko's teeth while he dealt with Ronin's bath. And even though Denis has been the one giving Ronin the bath (his bonding time with the boys), Ronin has been demanding that *I* give him his bath. Ronin didn't like Denis telling him to get in the tub. Ronin didn't want to take off his clothes, didn't want to be picked up, and didn't want to have a bath in general. This wasn't going to be acceptable to either Denis or me so he put a squirming, wriggling, screaming Ronin into the tub. We switched again after a time and Ronin wanted OUT, he wanted the soap and water OFF him, he didn't want a bath at all. I was firm and tried to give him options, but I think Ronin felt like he was out of control. Even after scooping him up and bringing him to Nikko's bedroom where the PJ's were at, Ronin wasn't calm at all. It was really hard for me to see him screaming at fever pitch, but I remained calm and held him - cradled him - while he hiccuped and wailed. I told him I was there and was going to help him calm down, just like the book said. Ronin threw up in his towel but I kept him clean. When it got to the point where I kept trying to dress him and he refused his PJs but wanted his other clothes, I told him that he didn't have to wear ANY clothes, and I got up to leave. Immediately he pleaded for me to dress him up in the PJs and then I could feel the tension start to leave as he settled down. After dressing, I gave his thin little body some big hugs and he asked me to carry him into the living room, which I did. Within a minute he was back to his former self. Poor little man. Post-tantrum, I tried to pinpoint what the triggers were but can conclude that it seems to have been based on a lack of control on Ronin's part. Meaning, he could possibly be falling apart when he does not have a say in what is going to happen next. He likes to be first, likes to be in control of what he is doing. Man, it's not going to get any easier for him, but I AM going to help him through this better than the first time.

Gas tanks and Kappy

2011-02-09T00:48:00.003-06:00

2/8/11 School Report - Speech: Playing cars - putting gas in car, vocab.

Whenever I go to the gas pump, I don't take the kids out of the car so they have never seen me put gas in the tank. I would like to do this when the weather is better and someone else is with me so Nikko doesn't wander or fiddle with stuff he's not supposed to. I thought about taking him out of the car recently when we went to Costco, but I feared that another car would pull up behind us and Nikko wouldn't see it.

Kathy cancelled ABA with Nikko today because she was sick. I wonder if he knew that today she was supposed to come, because at bath time, while he sat on the toilet, he suddenly said, "Kappy's coming to play." He repeated it a few times and I corrected him, saying she was sick and that Rebecca was coming to play with him tomorrow. I don't think he was as thrilled to hear that.

Asking, improving

2011-02-08T00:06:00.003-06:00

Nikko has been asking for very specific things lately.

"Chocolate-a-pop-tart?"
"Cheese sandwich?"
"Shrimp chips?"
"Potato?"
"Apple juice?"
"Bouncy house?"

I have to prompt him to say I WANT, but all these things are asked independently. I tend to get "Fish sticks" and "Biscuits" mixed up. Because Bouncy House was the only non-food item he requested, I had to unfurl it downstairs and turn on the mini generator to get it going. The kids jumped in it yesterday and today he wanted a repeat. I'm afraid he's going to request it from Kathy tomorrow, and she'll have to refuse him the use of it, unfortunately. It's just too big to keep filling up and de-airing it frequently. I was feeling lazy today and really didn't have any motivation to put it up. I even refused him at first and he was very upset about it. But I relented since he asked me for it. After snack time I had a burst of motivation to plug away at purging things in Nikko's room. I'm hoping to set it up as a reading area and make more room for storage. The purge is coming along, but I really have to be in the mood for it.

Nikko was engrossed with the GeoTrax train set for most of the day. I think he saw Ronin depicting a scene in one of the GeoTrax episodes where a train becomes derailed, because by mid-afternoon I saw Nikko taking his yellow engine and hang it off the side of the tracks while the train cars remained grounded. While the kids played with the trains, I put on a new cartoon called Bubble Guppies on. There was a scene where a duck was being chased by a pig and Nikko seemed to be watching and laughing at the overdrawn misfortune of the duck. It humored me that Nikko was understanding what he saw on TV. The other kids seem to like this new underwater adventure so I'll keep it on the DVR for a while.

This evening I went to a PEPS meeting at Fairview. It was in regards to IEPs, and while the information wasn't as relevant to me as I thought it might be (re: Response to Intervention process [RTI] and talks about both obtaining services w/ or w/o an IEP, as well as having the right to obtaining data on your child's performance in school because it should all be quantifiable), I eavesdropped on a conversation one mom was having with a psychologist regarding food allergy protocols at Westbrook. After their conversation I chit-chatted with the mom about IEPs vs. 504s and was surprised that Ronin might need an IEP for his food allergies. That's confusing, but I think a conversation with the school nurse might help clear things up. It was nice to talk to this mom because even though her son was in kindergarten, we had enough in common (we both LOVE the McCarthy/Winters collaboration) to have a conversation, whereas I have seen the other moms at these meetings and their kids are older, thus we really don't have anything to talk about. I will be in their shoes in the future, but right now I find it hard to connect in real life with others that are in the same boat as myself. Nikko's classmate's mom (Faith) wasn't at the meeting tonight. Nikko was invited to a birthday party in two weeks so perhaps I'll have a better opportunity to meet some moms then. Maybe.

Costco trip

2011-02-07T00:56:00.006-06:00

I looked at four new inches of snow on the ground and wondered when the shovelling would begin. Tomorrow the temps are supposed to venture into low single digits, turning this powdery snow into ice, so at some point today we would have to go outside. I've just been feeling low on energy lately and my moments of motivation seem to hit around 4-5pm. Something must be off with my circadian rhythms.

It wasn't until 4:30p that we decided to go out. Denis stayed with Ronin & Audrey, destined to shovel and climb snow hills, while I planned to take Nikko with me to Costco. I thought about leaving him at home while I made a quick trip and I know he likes trampling in the snow, but I wanted him to be "social" by being exposed to different places and different places. I had to gas up the tank first (I was driving the Civic) and Nikko got somewhat nervous sitting in the back seat and not able to see me while I stood at the pump. I sat in the driver's seat and joined Nikko while he sang London Bridge is Falling Down. Then we parked and went into Costco. Nikko was happy with a lollipop, dragging his feet behind the cart and sometimes hopping onto the bar in front of me to hitch a free ride. We had to pass by the DVD section and Nikko quickly ran to grab a colorful DVD. The title was a Chihuahua movie so I said uh, NO and I put it back. He had another opportunity to grab something and this time it was a Leap Frog DVD titled Numbers Ahoy for $6.99. That was acceptable to me and he clung to that DVD case like it was an arm. We'll likely watch it tomorrow since this evening was dedicated to the Superbowl, the commercials and Glee. Nikko was not a bother to bring to the store at all, and luckily we were able to pass by the food court without any resistance.

A good day

2011-02-04T22:41:00.006-06:00

2/4/11 - School report: Speech - Lots of sing-song today so tried to channel that into singing. Old MacDonald - he thought of 2 animals. He sang Jingle Bells and did Row Row Boat, What ? with pictures, greetings.
Bathroom - Nikko had smeared poop in his pull-up so we put lots of vaseline on his bottom.

We ventured out of the house today to speech. Nikko was in good spirits and easily took Karen's hand to get to work. After his session Karen said that he did well. He knows the routine with her and when he puts something away in a box, she will hold the lid closed and say nothing until he asks her to "Open" or she'll prompt him with "What does Nikko want?" He answers her directly. I noted that most of the time I get the whines. He never whines with her. If that's a comfort thing, then I am jealous!! I like to think that our expectations (mine and Karen's) are not that different.

Rebecca and Jenna came over for Nikko's ABA session after school. He was in good spirits, even though the bus came at 4:40p instead of at least 4:30p. Nikko still had time to snarf down some cheese puffs and get a diaper change while I let the other two set up downstairs. His session, according to Rebecca, was so-so. She said he didn't complete his drills, and she didn't record the data because it was behavioral. I think Jenna could tell I wasn't thrilled that Rebecca didn't record any data because Jenna mentioned to Rebecca that she should still record an "i" for inconsistent, because if Maria read the reports then it would look like Nikko didn't know how to do the drills, when in fact he DOES know the drills but his performance was based on behavior that day. I think the next meeting with the school/ABA team will probably be in late March or early April. Hopefully it's before the IEP meeting.

Snow Day

2011-02-03T00:47:00.009-06:00

After lunch we suited up the crew and braved the fallout from Snowmaggedon. Roughly 20 inches over 22 hours with 5ft. snow banks in some places. The tallest snow bank against the kids was roughly 3ft. The kids' reactions to the massive amounts of snow varied. Nikko immediately started hiking up the drifts and meandered independently. He was content to march in the snow. Ronin tried to tackle the tall snow drifts, tried to push his shovel around, but gave up to make snow angels around the corner of the house. Audrey whined a lot. A LOT. She wasn't thrilled to be outside in snow drifts that came up to her waist. Luckily, our neighbors Brianna and Alex, joined by two other girls, were out to play and ushered our kids into their backyard for a spell. Even Nikko joined them, and when I went to check on the kids I saw Nikko marching in the snow away from the swingset where the kids had congregated. Their dad offered his more powerful snowblower for us to use, and Denis gladly accepted. I didn't mind the physical workout of snow shovelling, but if we didn't take up the offer then I think we would have been outside for five hours instead of two.

We came inside for snack and to thaw. Nikko had fallen asleep for a short moment but I had to wake him up to change his diaper. Ronin fell asleep next to me, too. Audrey was the only kid who didn't succumb to being tired, but unfortunately her sleep tonight seems fitful instead of restful. In hindsight I marvelled that Nikko was very interested in being outside and walking around in the snow. He didn't go in right away, and when I was taking off his snowsuit I was alarmed to find a ball of snow the size of an egg down the front of his boot. The bottoms of his inner pant legs were soaked. I wonder if this had made Nikko uncomfortable the whole time he was outside or if he had a high pain tolerance and didn't notice the snow in his boots. My guess is that he was uncomfortable but not enough to stop playing. After all, toward the end of the outing he and Ronin were climbing up a 5ft mountain and sliding down. Ronin went face first, like Superman, whereas Nikko opted to spin and tumble down the back side. No one had the dexterity to make snowballs and throw them, except for mean attempts by Audrey.

Tomorrow school has been cancelled for a second snow day. That means we'll be homebound. Sarah will come to work with Nikko at 2pm instead of 8:30a, which is fine by me.

Sorry

2011-02-01T09:54:00.005-06:00

2/1/11 - This morning Nikko was eating a cheese sandwich (croissant cut in half and smeared with cheese sauce) when he dripped some cheese onto the placemat. He sat looking at it for a minute then got up and gravitated to my side by the computer. When I looked up and saw the spill I got a napkin and announced, "Oops, what a mess, Nikko!" He wasn't looking at me but said, "Sorry!" I replied, "That's ok, Nikko, let's clean it up!" I wiped it quickly and replaced his napkin. Then it was business as usual. What tickled me about the conversation was that there WAS a conversation and that Nikko spontaneously said SORRY. Very much in context!

School report - Speech: Association puzzles, likes matching them. Labeled, greetings.

This afternoon, after the boys got on the bus, I took Audrey with me to Costco and to WalMart for last-minute provisions and before the blizzard hit. Snowmaggeddon is one of the colloquialisms that this ice/snow storm that's rocking the northern mideast and west is being called. If the temperatures aren't that bad tomorrow, maybe we'll suit up the kids to go in the snow, because school was cancelled for Wednesday. I also cancelled Nikko's speech tomorrow with Lisa, but I think it was a good call because there will be up to two feet of snow on the ground and driving conditions are going to be bad.

Nikko's diaper rash is getting better. He wasn't in as much pain as he was the last two days. We're slated to see Dr. Nelson again on the 14th and I wonder what she will be recommending this time. I pray she won't tell us to do another two enemas. I also wonder if I should try tweaking the miralax dosages before the appointment. His poop has been liquidy at times, and splattery the other times. Very little has been solidly formed for two months. I sure hope it's time for the fiber build-up! I'm not seeing any dark behaviors that I saw in October and November. This is good for school and for therapies. On Friday, Jenna will come over to observe Rebecca so I am hoping that meeting will bring Rebecca more confidence in her relationship with Nikko. Unfortunately, I won't be around at the end of the session because I hope to go to see a school play in which Rory is performing. I will probably take Ronin with me, too. I think he will appreciate seeing something unique. This means that Nikko won't see me after the session; Denis will be here to take care of Nikko and Audrey. I'll have to catch up with Jenna another time, maybe through email.

Potato / Ronin's meltdown

2011-01-29T00:10:00.003-06:00

1/28/11 School report - Speech: Better work today. Good naming household items. Said "I don't know" twice when I cued. Then twice on his own! He also said "Hi Winters" when I said "hi".

At lunchtime, I decided to heat up some potatoes in the microwave, split them open, slather with [fake] butter and serve up as a baked potato. Nikko love it, had about three halves. The boys went off to school. When they came home, I saw that they went to a presentation given by a dental hygienist because they both had bags with a toothbrush, toothpaste and an overview. In fact, the overview said that the dentist had a child with ASD that currently goes to Prospect High School. Nikko was content to carry around his toothbrush and say, "Brush your teeth" again and again. Ronin was happy with his wares, and since Audrey didn't go to school I gave her a toothbrush from the cabinet and snagged Nikko's toothpaste to give to her. I think Audrey went to bed with the toothbrush and paste, too. When it came time to go to the in-law's house for dinner, I saw that Nikko was standing on a stool by the kitchen counter, looking for nothing in particular. He was poking at the bag of potatoes so I took a small one out and gave it to him. I don't know why but he quickly adopted the potato and ran happily away. That potato came with us to the in-law's house, by the way. And it went to bed with Nikko, too. I wonder if it will hold the same power tomorrow as well.

Just wanted to note one more thing, that yesterday before the boys left for school, Ronin had the mother of all meltdowns, the worst I've ever seen with him. He wanted to put on his boots before Nikko, but Nikko had come to me first and I wanted to get Nikko ready so that he could stand by the door all set to go. Ronin didn't want to be second. HE WANTED TO BE FIRST. And that's when things got ugly. Ronin demanded Nikko to come back and take off his boots so that Ronin could be first. I kept trying to put socks and boots and coat on Ronin, and he struggled in protest. I've allotted only five minutes for the "coating" process and Ronin was making this all drag. I got really irritated and angry, saying that Ms. Veronica was coming and wasn't going to wait for us, that if we were late then I'd have to drive him to school.

Uh-oh.

Ronin suddenly changed his tune and wanted me to drive him to school. I was pissed because I wanted them on the bus. I got the boys outside with Ronin screaming and crying for the whole block to hear him. When the bus pulled up, Nikko got on but Ronin dragged away. I told Ms. Veronica that I'd be driving Ronin, despite her coaxing Ronin to join the bus. When the bus pulled away I grabbed Ronin's sleeve and dragged him back into the house with grim determination. I had to get Audrey booted and coated, then make sure I had my purse and grocery list ready to go. But Ronin was wailing that he wanted the bus to COME BACK. I was screaming at him by now, saying that the bus was GONE and wasn't coming back so I'd have to drive him. He wouldn't sit quietly or patiently at all. That was driving me batty. I say this all low-key, but at the time I was pretty hoarse, angry, pissed off, you name it. I put Ronin and Audrey into the Pilot and drove to school. When the teacher came to unbuckle Ronin from his seat, I thought he was going to launch into another tirade but just then another student walking by said, "Hi, Ronin!" It was a classmate, and he and Ronin walked hand in hand toward the school. Yeah, cute. I was relieved for that, but having such a horrible time and feeling awful because I was still sick that I was crying all the way to Costco. I think being in the house for two weeks with sick kids, and sick me, has taken its toll.

Musings

2011-01-28T01:50:00.003-06:00

1/27/11 School Report - Speech: Tried to work on what ?'s - not too interested. Got a fake cry. Worked on greetings, I see____, & "my turn" taking turns on trampoline w/me.

I also wanted to include an email correspondence I had with Nikko's OT regarding his "singing through verbal instruction" incident yesterday:

Me: Hi J,
Your note: The harder the skill is - the more it seems Nikko sings through my verbal instructions - sounds very on par with Nikko's current attitude to date. Into the new year, he has become more challenging to his ABA therapists such that we are currently in realignment with their team leader so that all the therapists are on the same page in terms of methodologies used to work with Nikko. He has been difficult to come sit at the table and work. He has been really "unfocused" when trying to get his attention, yet is able to complete the required tasks. He is challenging authority, including mine. I observe him when he is watching something on TV that he doesn't particularly like or doesn't suit his tastes at that moment, and he usually starts droning and/or covering his ears to block out the audio (but not the visual). I just found it rather interesting that he is doing this at school, too.

The "unfocus" is the crux of many problems, and also the hardest thing I am dealing with as of late. I don't really have a point to this email except to tell you that I'm not surprised he's doing that at school, but also that it transcends into the home as well. Any thoughts?

The Reply: Yes - I do think he can be "challenging authority" based on activity preferences. My past experiences with children with autism is that the winter months can be especially difficult. With Nikko - the winter break and then the illness probably just compounds this. Its hard at times to determine if he truly is struggling or is "choosing" not to try. Hang in there - we just keep on trying. Know that we appreciate your struggles and are glad you know your child so well.

This is an interesting point about the winter break and the illness. I agree with both, but I am really quite perplexed on the timeline of when things happened. October and November were not great months for Nikko at school, plagued with constipation problems (they're not over, they're just currently being managed under the radar) and Sarah came aboard again. Nikko started improving speech-wise by early December, then at the end of the month Rebecca came along. Nikko had been steadily challenging both Sarah and Kathy during their sessions in the fall and winter. But he has not been great with Rebecca at all. Winter break came and went, and when he returned back to school Nikko seemed to be doing well. We are four weeks back into school and now the issues of being unfocused are coming back.

I'm feeling really pushed by Nikko at times, especially when it comes to wanting something he doesn't necessarily need at the moment. He was demanding "cheese sandwich" a half hour before our regular lunch time, and I went ahead and fed him even though I wanted to wait longer. He saw a random bag on the kitchen counter that had Santa PEZ dispensers in it. He wanted it. Ultimately, I gave it to him including the PEZ candy. Within minutes, Nikko was howling and cackling. I like to think it was due to his latest coup in getting the PEZ dispenser, not because he inhaled all the PEZ candy. Harumph.

Unfocus

2011-01-27T01:00:00.002-06:00

1/26/11 - School Report - OT: Sensory motor prep activities - trampoline, big ball activities, animal walks. At table - worked on name & cutting. The harder the skill is - the more it seems Nikko sings thru my verbal instructions.

When Nikko doesn't like something on TV, he covers his ears and starts droning in a monotone to block out the audio. But he doesn't necessarily look away from the TV, either. I wonder why.

Nikko had speech today. Lisa said it was a really good session, he was happy and focused and working. She was doing sentence approximations and he was able to complete sentences with her. At one point she said something like, "We are going to see_____" and he replied, "Mom." That surprised me because he never says Mom. I'm Boppy, along with the phrase, "Good Night, Boppy." She thinks she could expand on these approximations, especially since he did two of them in context. Ok, then!

Nikko seemed to have a good day at school, and then he had ABA with Rebecca after school. I didn't hear any arguing, but I did hear Rebecca using very outgoing language. I think he tired her out a bit, actually. But her report of the session was that while he was compliant and completed whatever tasks they could get to, he was extremely unfocused. This unfocus seems to be the crux of our problems. I don't have any suggestions on how to keep him focused except to be engaging and in-your-face, touch his shoulder to get his attention and have exciting stimuli. I guess I'll have to have a discussion with Jenna about this.

Ice Age

2011-01-26T01:06:00.003-06:00

1/25/11 School Report: Speech - "I want puzzles please" to association puzzles he saw. Worked on greetings, I see_______.

Today I tried another variant of FIRST/THEN with Nikko. He wanted to watch the movie Ice Age 3, which we don't own but is currently playing on the DVR On Demand via Comcast. But he called it "Dinosaurs." I put it in and it was close to dinnertime. When I was ready for everyone (willing) to eat, I turned off the TV and told Nikko, "First EAT, then Ice Age." I repeated this until Audrey started chanting it. Nikko understood and ran to the kitchen to take one bite of his cheesy mac, then ran back to the living room expectantly. Needless to say, it was a lot of repeating First Eat, then Ice Age. He initially said, "then COOKIE," but I corrected him, saying "First EAT, then Ice Age." I also signed EAT just to reinforce the visual. He made it through most of his food, but Ice Age prevailed in the end.

Ronin, however, was too tired to eat at first. Eventually he ate some bread and [fake] butter while I gave Audrey a bath. He's currently sporting another temperature, consistently at 100.? all day. I really hope it will disappear so he can go to school tomorrow, but the outcome is looking somewhat bleak. I would really love for him to go to school because at home, in this sickly state, he is ultra-crabby and picking fights with Audrey every minute. I have had many parent tantrums today, too much screaming on my part that I regret. And I am battling my own cold now. In fact, I need to get off this computer and get some sleep!

The wry smile

2011-01-23T01:19:00.005-06:00

1/21/11 School report: Speech - Nikko seemed happy to be back! We worked on naming pix. If he doesn't know one and I shake my head no he will say "I don't know." So cute! We are working on the hosuehold item pictures now. Tried fishing games, greetings, directions.

I sent Nikko to school on Friday. His fever was gone and he was no longer lethargic. He seemed happy to go back to school as well. I pretty much cancelled all his therapies during the week because I couldn't predict his mood. Friday morning was very perplexing because he woke up and curled himself on the floor in front of the shoe cubbies. He wanted his juice but wouldn't take any steps toward the kid table, no matter how enticing I made it for him. He wanted me to bring his juice to him, but I refused. Perhaps I did that when he was sick in the living room, but if I brought him his juice at other places in the house then I think it would start a precedence of trouble. This has become a familiar pattern as of late, Nikko pushing my boundaries and trying to see how far I will go. It sucks.

We didn't have anywhere to go today. However, Ronin woke up with a fever to match the fever Audrey had yesterday. So now I have two little ones with fevers that fluctuate. Audrey's nose is drippy and she is driving me insane because she wants me to wipe it all the time. She refuses to do it herself. I've tried to get her to wipe her own nose but that will of hers is just as strong as Ronin's. As for my poor Ronin, his fever caused him to be lethargic yet agreeable today. It was much easier to parent the sick kid that could communicate his pain versus the one who could not. :( Ronin ended up sleeping in the afternoon and throwing up juice in the evening. I started him on pedialyte on ice because his appetite has disappeared.

Nikko seems oblivious to his sibling's pains. He jumped on Ronin in the evening, smooshing Ronin against a pillow. It wasn't malicious, although Ronin was screaming for Nikko to get off him. I came by and tried to move Nikko. He wouldn't budge. I tried to pry his arms off the pillow and Nikko stood fast. I looked at Nikko and he looked directly at me with a wry little smile on his face. Through Ronin's screams I understood immediately that Nikko knew EXACTLY what I wanted him to do, but was purposefully doing the opposite. For whatever reason, I don't know. But it showed me that Nikko was completely cognizant that his actions were irritating Ronin.

One more thought before I go. Today I received emailed pictures of Nikko at school. I am so appreciative to receive these pictures because I can see what Nikko does at school. It warms my heart to see him amongst his peers. But today I noticed something in the pictures that has really been around but hard not to see. Nikko looks spacey. He had three pictures playing at the sensory table. It was filled with snow and ice, and for each picture he didn't look directly into the camera. In fact, in one picture he was standing next to a boy (Charlie, maybe?) who stood and grinned really wide at the camera. Nikko was leaning on the edge of the table, looking off to the side. I reviewed all the other pictures and yes, he does this in many instances where he is playing alone, but I noticed more engagement in the pictures prior to this last set. I really hope it's a fluke. Another thing I've been noticing again as of late is the staring-up-at-the-ceiling thing he does when he is off in his own little world. He'll be sitting on Denis' lap at storytime and we'll ask him what song we should sing. Instantly his eyes will go up toward the bookcase against the wall and his eyes will stay on that bookcase. He may or may not be listening to us. Many times we will put a hand on his chin and turn his head toward us while his eyeballs stay glued on to the bookcase. It takes my hand over his eyes to make them shift back to us. Is there a term for this lack of engagement? It pains me to see that this still happens in Nikko.

Finally better

2011-01-21T01:00:00.002-06:00

Nikko's fever broke some time overnight but he was warm all day. The lethargy was almost gone because he sat (and leaned) and played with the train set. His appetite was so-so until the afternoon when he went gaga over peaches. But by the day's end he was probably overtired from not napping all day. For the past two days he was in and out of sleep and today he didn't nap at all. I took an hour to go to the school and observe the Kindergarten / Extended Support Program. Atz came over to watch Nikko and Audrey. She told me that he didn't whine or put up a fight when I left. It was good to observe how the classrooms were structured. Upon visiting the ESP room, I felt at east that it was a place where Nikko could get work done. I can envision his ABA drills being done there. What totally freaks me out is the idea of him being at school the entire day, even through lunchtime. He's not the best eater. I've got to start him on grilled cheese sammies or something friendly for school! He's not eating chicken nuggets like he used to. I wonder if cold pizza will hold up in a lunch box? In case he relapses tomorrow morning, I cancelled his speech at APL. While I want him to keep moving forward in speech and everything else, I also want him functioning at 100%. I think his sickness this week made him crabby and weaker so we've got to hit the reset button over the weekend.

Still sick, and an epiphany

2011-01-20T01:18:00.002-06:00

Day 2 of Nikko's fever. He was lethargic all day except for a two-hour window around lunchtime. He perked up a little bit and ate a biscuit with (fake) butter on it and some grapes. I had called the gastro in the morning and they told me to keep adding miralax to his pedialyte. I worried that yesterday he didn't have any at all and that would back him up. But this afternoon he had a big bowel movement that was equivalent to a liquidy backup. I hope it continues, quite honestly. Then he went back to Mr. Lethargic in the afternoon/evening. I brought him a biscuit and grapes to the floor during dinner and to my surprise he ate it. He asked for more grapes. No throwing up so far. And when he asked for "A-chocalata-pop-a-TART?" I could see that he was on the mend. His fever broke and now he was at a low temperature. I cancelled his early morning ABA in the hopes that he'll get some rest before going to school tomorrow.

On another note, I had an epiphany earlier this evening.

It was almost bath time for Audrey. The living room looked chaotic. We try to clean up everything before bath time starts so that I don’t have to pick up after everyone goes to bed. Most of the toys have assigned bins which the kids have recognized. The challenge was getting the kids to continue the clean up process.

I announced that it was time to clean up and started singing the school-based clean-up song. Audrey didn’t budge from her pile of stuffed animals. Ronin started picking up a Mater tow truck to put it away, then settled down in front of the car bin to play with it longer.

“Clean up, guys!” I started bellowing, making a big production by picking up random toys and tossing them into their bins. I noticed that each kid was idling with a toy that was headed to a bin. I turned off the TV and kept bellowing at them to pick up toys. [Nikko was lying on the floor, sick and lethargic, so he was exempt].

I was shoving a random toy into a colored bin when I knelt down in front of a bookcase and yelled, “Why? Why is this SO hard? Why can’t you guys just clean up when it’s time? I don’t want to be yelling at you guys to clean up for the rest of my life! Jesus, WHY can’t they do this?”

Suddenly I felt like a bolt of lightning struck my brain because the next thought was, “Because they need help. They don’t know what to do. There are bins, but they don’t know where to start or what to put away first. I think I need to list them down. That’s right. I’ll make a list of each toy category and then they can see what needs to be put away next.”

The wheels in my head were spinning as I got a tablet of paper and a marker. I drew a checkbox and next to it I wrote: CARS/NEW CARS. Below that was another checkbox and next to it was the word TRAINS. Next checkbox and TEA PARTY BIN/FOOD/DISHES. Then was STUFFED ANIMALS, POPPOLO, PILLOW PETS. After that was AUDREY’S PURSES. Then was FIGURINES. The last checkbox said EXTRAS/COUCH. I basically scanned the living room to see what bins needed to be filled and put away, then listed them. I showed the kids which item was next and helped them pinpoint the toys in the room.

It totally worked. They found toys, they put it in the bins, they put the bins away. The floor was clear in an instant and I gave high fives and praise. I resolved to put the checklist on paper, laminate it and then tape it to the wall. We can even put a check with a dry erase marker to indicate what was accomplished. I was shocked that the clean-up list was so simple and effective.

Nikko is sick.

2011-01-19T02:10:00.002-06:00

Nikko was sick all day today. He was lethargic and lay on the floor going in and out of consciousness (sleeping). He didn't eat. He drank some juice at first, but he would throw it up within minutes afterward. As the day progressed, he was throwing up frothy spit, then I saw the yellow traces of bile. Finally, this afternoon, I was able to get some flavorless pedialyte and I put it in a sippy with ice. Somehow he took sips of that and was able to hold it down in his tummy. But later in the day he walked to the kitchen, took a few sips of regular juice, and then promptly started throwing that up again. I stuck to the pedialyte. He went to bed but woke up around 11:30p. It was a good opportunity to try and hydrate him again so I took him into the living room and let him lay beside me while I folded laundry. He curled up in the same spot, the crook of the couch on top of some pillows. I walked him back to bed and I think he's resting again but I'll check on him before I go to sleep. He didn't go to school today and I don't think I can let him go again tomorrow since he's not fever-free as of tonight. My biggest worry in the back of my mind is that he will become constipated again, and all those enema efforts will go out the window. We'll see how tomorrow plays out.

Pinata, and finally adminstering "it"

2011-01-17T02:28:00.003-06:00

I'm behind on posts.

1/14 - Nikko had a good session on Friday with Karen. No fighting or resistance. She even maintained using the therapeutic listening CDs with him, and apparently he's putting on headphones with no problem. One thing I got out of our post-session wrap up is that Karen suggested minimizing the number of hours of TV he watches in a week. This is to reduce the ambient noise around him. Apparently, Nikko doesn't multi-task well and may have trouble filtering out which sounds are the most important ones he should be listening to. This in turn might speed up his response time pertaining to processing words.

School report: Speech - yesterday - good categorization and labeling common food, animals, clothes. Greetings, yes/no. Today - I see _____, yes/no, singing songs.

On Saturday we took the kids to our group's after holidays Holiday Party. It was at a big house in Streamwood. We have been there before, despite Ronin & Audrey's initial resistance to leaving my side upon arrival. Nikko, however, took off his shoes and socks and took off running. He didn't seem to mind all the roughhousing boys around him or the noises from laughing adults in the kitchen. He loved going up and down the carpeted staircase, running down a hallway and descending the staircase leading to the back of the kitchen. At one point I even saw him running in the horde, giving little shoves to the backs of some of the boys, then smiling and running away in a mock game of chase. It was only during the pinata moment that I held Nikko back. They were using a real wooden baseball bat and I didn't want Nikko to step in unexpectedly. We got home a little after midnight from all the cavorting around. This made me think the kids would be ultra-tired the next day. Not a chance. Today, everyone was running full steam ahead. Nikko fell asleep for an hour in the early evening, unfortunately. This affected his sleep patterns and so he lay awake from 9p-12p, talking, giggling and singing to himself in his room. At least he didn't try to bolt. But he was in the dark except for a small night light. One little nap can wreak havoc just hours later.

I can't believe I forgot to mention that on Saturday morning and Sunday late afternoon, we administered the enemas on Nikko. We put a towel down in Ronin's room, gave Nikko lollipops, and lay him on his side to administer the formula. Nikko was terrible upset, uncomfortable, angry and crying. We waited for a minute or two, then walked him to the bathroom to sit on the toilet until he expelled whatever was in his bowels. We did it, he survived, so did I. :)

Noncompliance again

2011-01-13T22:55:00.004-06:00

1/13/11 School notes - Bathroom: Nikko pooped. It was more like diarrhea. Grayish/brown. He also made regular brown poop on the toilet. Very gassy.
And on the back of that report: Nikko was on the toilet and I went in to ask if he went poopoo - He said "I did! A bunch and bunch of poopoo!" He said it 2 times! Yay! :)

Did I read that correctly? I reread that paragraph and am shocked and stunned. First, he pooped on the toilet at school. He has rarely ever pooped on the toilet at home. That is amazing. Second, he said something that was totally in context with the situation. Where did he get the words bunch and bunch? I'm really, REALLY happy that he said something, twice, but imagining normal-sounding phrases to come out of his mouth is just so surreal. I would like to get this caught off-guard in a good way, more often.

I wish I could say his 8:30a ABA session went as smoothly. Sarah came to play with him and I think he didn't want to sit at the table with her. She said that she blocked him from escaping the table by sitting next to him, and barring him from crawling underneath the table, so he gave up trying to get away from her and sat and cried and screamed for 15 minutes. It was a LONG 15 minutes. I think five minutes into his tantrum I sat up hear and realized it was still going on. However, unlike on Wednesday, I didn't make a move to go down and save him. His cries sounded angry and mad, but I figured that he should stick it out with her, that there was still plenty of time to get work done. Good thing I didn't go downstairs because he did stop crying after 15 minutes and then continued to work at the table the rest of the session. He challenged Sarah and she didn't give in. Fine.

I think Nikko is challenging everyone in authority around here. Not only has he been noncompliant with Kathy, Sarah and Rebecca, but today when he got home from school he tried to pull that stuff on ME. It's winter and there is a lot of gear the kids wear to leave the house for school. When they come home, the floor is littered with their socks, shoes, backpacks, jackets and hats. It's more stuff to put away than usual, but I still demand that the kids adhere to our routine of putting their shoes back in the cubby, their hats in the cubby bins, and to hang up their backpacks and jackets. They do it at school, they can do it at home! I know they are probably cranky, tired and hungry from getting off the bus, but I still want them to put their gear away before having their snack. Today, Nikko sat at the kitchen table and wanted cheese puffs. I said, "First put away backpack, shoes, jacket and hat. THEN cheese puffs." Well, Nikko didn't want any part of that. He sat and whined & cried. I repeated my request and he flatly refused to budge. I tried to drag him, made him pick up his jacket which he angrily released to the floor, so I walked away from him. He was still pretty mad, but I kept repeating my request. He stood up at one point so I quickly ushered him toward the cubby area and shoved his backpack into his hands. He was protesting, but eventually caved in and [angrily] hung up his stuff. THEN I put a bowl of cheese puffs in front of him. As promised.

One more instance this evening when I thought I was going to lose another battle was clean-up time before taking a bath. Denis was home by this time so it was better to have his support in encouraging the kids to pick up toys. The three were sitting around the Hungry Hungry Hippo game, fighting of course. I decided that they could not play with it during clean up, so I quickly disassembled it and put it in the box. Nikko was pretty mad because he wanted to play with it. "FIRST clean up, THEN Hungry Hungry Hippos," I announced to him while putting it up on a shelf slightly taller than him. Nikko was whining/screaming for it, but I started putting toy cars in his hands, then figurines, and any toy that needed to be put away. Nikko's demeanor soon changed to laughing/whining as he kept dancing in front of the shelf, expecting to get the toy but being interrupted by me making him put away other toys. It took a good few minutes to get the living room cleared, and as promised, I took the game back out and put it on the floor. This First/Then concept is really of the utmost importance for him right now. Nikko is impulsive, but is learning that he needs to accomplish what is first before being allowed to do/have what is next [then]. I am wondering if I should put another schedule in place here in the kitchen for putting away outerwear. Maybe there are too many steps to remember without being prompted.

Gains and the missing schedule setback

2011-01-12T23:54:00.002-06:00

1/12/11 - School report - OT: Tried swing - but didn't like it - Finally got him to say "No swing" when I wouldn't let him off. Worked on coloring, drawing faces/name printing & took cutting samples.
Bathroom: Nikko's pull-up was wet but he also went potty in the toilet. We are ok with pull-ups for now.

We went to speech today. Nikko willingly took Lisa's hand and turned to say good bye mom when she prompted him. After his session, Lisa said he had a really good one. They went to the motor room, just the two of them, and they played with bean bags pushing them down the slide. She said he vocalized a lot and it was appropriate for the situation, saying Crash when the bean bags hit the bottom. Lisa remarked that in the room, when she was doing an exercise with him, it might have mirrored something he does during ABA because he hesitated and gave her a sidelong glance as if to say, "Hey, she's making me WORK now!" Lisa thinks Nikko perceives coming to Arlington Pediatric Therapy as fun, and I would have to agree that Nikko seems to enjoy going to his speech sessions, no arguments or resistance whatsoever. And there's the promise of a lollipop at the end, too, go figure.

Nikko came back from school in a good mood, asking for cheese puffs once he got into the kitchen. He was going to work with Rebecca and I don't think he's warmed up to her just yet. I was hopeful, because after she arrived and everyone went downstairs, it was pretty quiet for an hour. I could hear Rebecca encouraging Nikko loudly. But after an hour, they both came upstairs. Rebecca told me that she could not find the yellow picture schedule anywhere in the bin, and Nikko wouldn't do any work because he follows that schedule closely. That really surprised me, one because I had just trimmed a ragged edge from that schedule two days ago, and two because Kathy just worked with him yesterday and didn't mention a missing schedule. We went downstairs and hunted for it for 5-10 minutes. I finally found that it had fallen between a low table and the projection screen. The problem was that Nikko thought he was done working for the day, and refused to let me go upstairs and leave without him crying. Still, I left with the hope that the session would resume. It didn't. He was protesting and screaming, and I could hear Rebecca say, "NO, Nikko." So I went downstairs to end the session, knowing she probably wouldn't get any more work done out of Nikko. Sadly, it was probably a wasted session overall. She and I both think he's still getting used to her and is trying figure out if she will be a pushover or will be a force to be reckoned with.

I've also decided to delay the enemas until the weekend. It doesn't make sense to me to administer then so soon after dinner and too close to bath/bed time. Maybe if dinner were at 5pm, but I need Denis' help to do this and he doesn't get home until after 7p, sometimes 7:30p. I will just do it on Saturday and Sunday morning, so I have the rest of the morning and afternoon to monitor his bowel movements. He's been through too much trauma the past few days, and I am also short on patience right now.

Gastro orders

2011-01-12T01:12:00.004-06:00

Dr. Nelson's nurse called me today with the doc's instructions and results:
Celiac testing came out normal.
X-ray results showed gas in the colon (probably normal) and a large amount of stool in the left side of the rectum toward the end. Therefore, she recommends the following:
-Use a pediatric Fleet enema 2 evenings in a row.
-Continue the 1/2 capful 2x/day of Miralax.
-Give him one teaspoon of Fletcher's at bedtime. (Fletcher's Castoria is made of natural Senna, an herb, a derivative of the senokot [root], a laxative.
-Try sitting after meals on the toilet, 5-10 minutes, within 1/2 hour after eating.

The reason why we're continuing another month of cleansing is because the colon and rectum are so stretched out right now that it needs to be cleaned out, and propel things through, so that the colon and rectum will return to its normal state. This could take a while. I found Fletcher's at CVS Pharmacy, but they didn't have the pediatric version of the Fleet enema. The pharmacist said she ordered some and will be in tomorrow after 11a. Guess I'll be making another trip out in the afternoon for that. And then I'll have to get Denis to help me hold Nikko down while administering the enema. Greeeaaaaat.

Today I visited the Northwest Suburban Special Education Organization (NSSEO) to return a VHS tape and get the PECS DVD to watch. While there, I had the opportunity to look at the other books and videos available for checking out. I picked up a behavioral intervention book that I've been looking/waiting for on amazon for months, a challenging behavior book, and a toilet training book. Great resources, but now I have to find some time to read all this!

And get this, his school report today:
Speech - Better attention today. Naming pictures, greeting, started association puzzles - 2 piece puzzles, he did pretty well: cake/candles, paintbrush/paint, train/train track. He was rubbing his eyes and I said, "Are you tired?" He said, "I want sleepy time." and laid down! It was a brief rest and then we did "I see ____"

I can hardly believe that happened. He usually requests food and only food. But sleepy time is totally out of context for where he was at, so that really says something about his developing self-awareness. That is truly awesome. Now, if I can figure out a way to get some fish oil into that kid, to do some brain boosting, I'll be set. :)

X-ray

2011-01-11T00:16:00.002-06:00

Today I took Nikko to his gastro appointment. It was about a month ago that we last saw Dr. Nelson. I didn't expect much, and honestly, not much happened. Nikko ate lots and lots of lollipops today. When we got to see the Dr., she asked how his poops have been and I told her how we never hit that level of solid formed poops, 1-2x day. She said that she would like for Nikko to have an x-ray so she can check for blockages or anything else, and THEN we will move on from there. Or as she had put it, and I don't quite remember her exact words but were to the effect of: "...and we'll see about what medications to use, and go from there." A little alarm went off in my head because I have heard from other ASD moms dealing with the gastro problems in their kids that many gastros push meds, which serve as a band aid, instead of helping to solve the problem. I don't really want Nikko to be on gastro meds right now. Sure, I want to find out what is causing him to constipate so quickly, and why can't his erratic diet support all that healthy eating that's supposed to contribute to healthy bowel movements? I think I have to compile a solid list of questions and have it handy for the gastro when she calls back in the next day or two. Oh yeah, so after our appointment, since my parents were watching the younger two, I decided to take Nikko straight to North Shore Hospital in Glenview for an x-ray. The process from registration to waiting to getting the x-ray took an hour. When we got to the exam table, I told the thin (Filipino?) rad tech that Nikko had autism and wasn't verbal, and he'd put up a fight so I'd have to restrain him, and would probably need help. When Nikko first laid on the table with lollipop in hand, he looked up at the square lights and perhaps thought it was a TV. For three seconds I thought we would be ok. Then Nikko started squirming, then squealing, then crying and yelling and wriggling. I held his arms and torso still while the tech held his legs and hips, which was probably harder to do. Somehow, they got a picture, even with Nikko bolting up at least once and losing his shoe. When we were all done, Nikko was pretty pissed off and breathless. I thanked the tech and escorted Nikko out. What was kind of priceless was the look on another boy and his mom who were waiting a few feet away, the boy wearing a smock and who was originally excited about his x-ray. I think we rattled them slightly, but I couldn't stick around to see. I whisked Nikko down corridors into the lobby and let him cool off while getting his coat on. Poor guy had the blood drawn Saturday, then restrained so we could look at his bleeding toe, and then today with the x-ray. I think I'm done with hospitals for a bit.

Nikko and I went on a quick grocery trip before heading home. The rest of the night was calm, thank goodness. Tomorrow he has speech with Kathy, and then while the boys are in school I plan to visit the NSSEO to check out a PECS DVD.

Triple blood draw

2011-01-09T00:08:00.004-06:00

Around 10a we took all three kids to Northwest Community Hospital to get their blood drawn. Ronin and Audrey were due for blood testing regarding their multiple food allergies and Nikko was getting ruled out for celiac disease per his gastro. We've been putting it off since over the holiday but decided there was no better time to do this, especially if Denis' case went forward in full motion this month. I loaded up on the lollipops, DVD player, books, toys and snacks. The kids didn't know what we were going to the hospital for. Nikko followed me to one of the registration booths and sat asking me for lollipops while a receptionist helped fill out all our paperwork. Nikko ate five of them before we were finished, and in between lollipops he asked like a parrot and would start whining when I told him no.

The lab was on the second floor, a very familiar place to us since we've been there multiple times when the kids were babies. Two phlebotomists were on hand to handle us. Nikko was called first but had to wait longer because his paperwork wasn't ready at that time. I led Ronin into the room, put him in my lap and instantly he was whining. I wrapped my leg around his, put my left arm around his body to grip his right arm, and then tilted his face toward mine with my right hand so he wouldn't see what the phlebotomists were doing to his left arm. Once the butterfly needle went in, Ronin started crying. He tried to move but I kept talking to him about eating Old MacDonald french fries when we were done. I also promised him a lollipop which I gave him immediately when we were finished. I walked him back to the lobby where Denis and Audrey sat, and then took Nikko's hand. He started whining, too. We did the same procedure, except Nikko had started crying loudly from the moment I picked him up. He was tense and tried to move his body but I immobilized it well. I also turned his teary face toward mine and started singing Twinkle Twinkle Little Star. He was pissed, but didn't lash out, thank God. When we finished, he tore off the taped gauze on his arm and fled the room, standing in the hallway to loudly protest. I walked him back (of course he trailed me the whole time) and called for Audrey. Happily and unknowingly, she said, "My turn!" She sat on my lap and was slightly curious when I turned her head away from her left arm. She felt the prick, struggled slightly and announced, "It huuuurrrts!" But there were no tears, I told her she was such a brave little girl, and she got stickers before getting a lollipop. The girl was no problem. :)

We went to do a Meijer grocery run, and finally got some chicken nuggets and fries on the way home. It was the kids' reward for getting their blood drawn. I was surprised that the hospital was not crazy-busy on a Saturday morning. It was almost deserted. That meant we didn't have to wait long at all, and that was fine by me. I think Nikko certainly didn't like what happened to him, but I don't think it was traumatizing since I was there and holding him the whole time. I don't want to do this again for a long time.

This evening, after dinner, I saw blood on the couch where Nikko sits. I ran to him and saw that the black part of his toe was gone, replaced by smeared blood. I thought his toenail came off but upon closer inspection I saw that the blackness under his toenail was probably a huge blood blister that had popped when he jumped on the couch. His toe actually looks closer to normal, much better, except for the tattered skin around the nail bed. It's a relief because his toe was looking like it needed to be amputated at the tip. Nikko refuses to wear any type of bandage, of course. It's maddening that we can't cover his wound without him trying to rip off the band aid.

I haven't been feeling great the past two days. My head is all cloudy, my sleep is messed up, and I've been missing my alarm so I missed my morning workout. I hope another day of rest will put my body back on track and clear my sinuses and cough. I need to work out again!

Karen's feedback

2011-01-07T23:40:00.002-06:00

After his session today, Karen asked me if Nikko had any reactions (positive or negative) to the therapeutic listening she did with him last week. I told her I didn't notice anything different. He wasn't more scripty and wasn't in a bad mood at all. He was destined to go to school anyway. Same thing today, he wasn't more or less scripty. Other than the toe-door-slamming incident, he's been in a pretty good mood all week. I have noticed, as I mentioned yesterday, that he's very unfocused as of late. I'm still wondering if the orange cheese puffs are to blame, or was it the cheesy mac I made (loaded with garlic because I ran out of onions)? I may never know, but I won't give him any more orange cheese puffs just to be sure. Karen talked about their session, how it went well until near the end when they were doing a memory card drill. He was naming a card and then depositing it into a box, signifying that the action is complete. I don't know exactly what they were doing, but suddenly he wouldn't put the card in the box because the lid was on, and I heard him screaming up a storm. She didn't seem worried, however. He got over it once the session was over and he promptly asked for a lollipop when he saw me. Karen talked about how Nikko takes a few seconds, even as many as 30 seconds, to respond to identifying a word. That response time needs to be improved so that he can properly utilize the words he has learned/is learning in everyday interactions. But there is something in his head that is not making the connection fast enough. The unspoken word is, I assume, autism.

We came back home, had lunch and then the boys went to school. I ran errands with Audrey. We went to drop off some mail, some gifts for the Creens, and then to Costco. The boys came home and had snack, and then revisited watching some Veggie Tales episodes. It was an easy night, and Nikko was still in good spirits. His toe is probably not hurting as much as it did, but it looks nasty and black. Hopefully it's just the bruise.

Tomorrow morning we are seriously going to attempt to bring the kids for the blood draw. I don't know how it will go, but I do know we'll have to bring some strong reinforcers like lollipops and maybe even M&Ms for Nikko. I'm not looking forward to it, but it has to get done!

Orange cheese puffs?

2011-01-06T22:26:00.003-06:00

1/7/11 School Report - Speech: Off today. Not too interested in activities. Did enjoy greetings. Tried where ?'s and fishing game.

This is disappointing to hear, in light of the fact that Nikko had a good ABA session with Sarah just that morning. When Sarah arrived, I told her how Rebecca's session didn't go well despite having a good day at school. Today everything was flip-flopped! Sarah said Nikko did good work, and when he got distracted by the slide and the bball hoop she piled everything up (like what Rebecca did) so he couldn't climb on stuff. I didn't hear any shrieking or complaining today, either. I wonder why he was turned off in school. I hope he's accomplishing things as of late, but we've only been back to school for four days now. Ah, the worry.

Nikko's foot still hurts, but his limp is improving. It doesn't look great, however. The tip of the toe and under/surrounding the nail bed are black, bruised. I wonder when that nail will come off.

On another note, Nikko's really been pushing me regarding wanting things, especially food that he can't always have, like cheese puffs. I am wondering, don't think I'm too nuts here, if there is a difference in the orange cheese puffs vs. the yellow organic cheese puffs I get for him? He's been defiant toward me during the times he's eating the orange ones, but I don't get this resistance when he's eating the yellow ones. I wonder if the food thing has any merit. The last time I doubted a food was when it was organic vs. regular mac cheese. He's eating fish sticks but nothing else unusual (chocolate pop tarts, no biggie). Maybe I should just phase those orange ones out... I only got them because Audrey made such a stink about them in the store. Figures.