Saturday, December 31, 2011

Under the wire

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!

Friday, October 21, 2011

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.


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.

Friday, September 16, 2011

Mini catch-up

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-up 9:20a School begins 4:15p 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!!

Tuesday, August 23, 2011

Sans ABA / The Dental Visit

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!

Wednesday, August 10, 2011

The Great Wolf Lodge (aka Wave Pool)

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.

Friday, August 5, 2011

Play To Talk

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!

Tuesday, July 26, 2011


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.

Thursday, July 21, 2011

High pain tolerance

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!

Tuesday, July 19, 2011

Busy July

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!

Friday, July 8, 2011

More Nikko

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.

Sunday, June 19, 2011

Getting back to balance

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!

Wednesday, June 15, 2011

Increased speech and comprehension

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"

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!

Monday, June 13, 2011

I'm back!

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. :)

Wednesday, May 25, 2011

Catch-up part deux

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.

Thursday, May 19, 2011

Another short.

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.

Wednesday, May 18, 2011

Short and sweet

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. :)

Wednesday, May 11, 2011

Catching up

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.

Monday, May 9, 2011

Turning tide

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.

Friday, May 6, 2011


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.

Wednesday, May 4, 2011

It's the little things, people.

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!

Sunday, May 1, 2011

Two great things today

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.

Friday, April 29, 2011


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

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!!

Thursday, April 28, 2011

On-paper gains

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!

Wednesday, April 27, 2011

Ice cream cones

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.

Monday, April 25, 2011

Catching up

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.

Wednesday, April 20, 2011

Speech gain :)

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.

Tuesday, April 19, 2011

Nikko in a nutshell

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.

Saturday, April 16, 2011

"Ice Cream" phrase

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.

Wednesday, April 13, 2011

Monster trucks

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.

Tuesday, April 12, 2011

2nd Opinion / Speech woes

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.

Sunday, April 10, 2011

Med shift?

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!

Saturday, April 9, 2011

Good speech, but bad communication :(

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" 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!

Friday, April 8, 2011

Catching up, and gastro follow-up

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.

Monday, April 4, 2011


Nikko came into the kitchen and pulled at my hand.
"What's up, Nikko?"
"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

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.

Wednesday, March 30, 2011


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.

Tuesday, March 29, 2011

Lost at Target

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??

Monday, March 28, 2011

Double duty outing

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).

Saturday, March 26, 2011

Making him talk / THE CLEANSE

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.

Friday, March 25, 2011

Who taught him that?

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.

Thursday, March 24, 2011

ABA/ Juggling

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.

Monday, March 21, 2011

I. Want. Cereal. Please.

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.