Tuesday, November 30, 2010

Too many toys in his hands

School report - Good day. He seemed happy to be back! Speech: We were trying to get him to say "hi" with high 5's to Mrs. K and Mrs. Biasco - he would do high 5 then look over his shoulder and crack up like - I am NOT saying hi! Too funny. Happened several times. Good job with body parts & requests. Imitated "I see ____" phrases. Louder volume today!

This was very surprising to read, when he didn't have a great morning. Nikko actually started the day positively and was in a good mood when Kathy came. But when we got downstairs, I had neglected to put the duffle with the bouncy house away and out of sight. Nikko saw it, knew what was in it, and apparently did not want Kathy to put it away. He was really angry, wailing and crying for probably a half hour. Kathy was able to coax him to the table and eventually he got focused and completed his drills. He was very entertained with some building blocks in one of the drills, and I don't know why. After therapy we had lunch and got ready for school.

Just before we stepped out of the house, I noticed Nikko was carrying a LOT of toys: velcro birthday cake, empty box of band-aids, two mini-dinosaurs and a "hand" erase top. I knew the bus driver wouldn't be happy to see all that so I tried to get Nikko to put some things down. No go. He would scramble to reach for the items, even though I made him say Bye Bye to them. Nikko was whining and crying when I took the dinosaurs out of his hands and shoved us out the door. We all walked down the driveway except for Nikko, who stood stubbornly by the door. As the bus came around the corner I grabbed Nikko by the jacket and pushed him down the driveway, crying. I shoved the two dinosaurs into his palm and was fuming but still led him onto the bus. I apologized to Miss Chris about the extra toys, but told her he wouldn't stop crying. I saw her buckle him in, red-eyed but quiet that he had everything in his hands. I contemplated calling Mrs. McCarthy to warn her of Nikko's mood, but hoped they would be able to handle him getting off the bus. That's why his positive report surprised me. That's great, I'll take it!

I'm still guessing regarding Nikko's poop. At bath time, after he had come home from swim practice, he had poop that looked rounder and was slightly more firm than the poop smears from the past few days. I wonder if the unfinished juice last night helped to make it so. His bottom is red but not angry, so I'll keep putting Desitin on him. Today's juice schedule seemed to go accordingly, he even finished the 1/4 capful miralax in the dinner juice. I wonder if he'll be soaked tomorrow morning because he was carrying around his juice bottle. I also still wonder if he's a bit impacted, despite the poop I've been seeing. I will have to decide in the next one or two days if I should administer something, or even try the Quecertin that my friend Cathy recommended in lieu of a suppository. Hmmmm...

Monday, November 29, 2010


It's been five days and I don't know if my theory is working. Putting miralax in Nikko's juice at dinner instead of breakfast sounded like a good idea, but the frequency and amount of poop has not changed. I've been watching Nikko for signs of straining and I haven't caught him in any obvious pain even though he retreats to Ronin's room or still hunches over the couch or ottoman. Therefore, I haven't unplugged him. This evening he did have a larger volume poop that was soft and I wonder if the MoPo is helping in that regard. Unfortunately, Nikko didn't finish his juice at dinner and so I wonder if he'll get a little stopped up in the next day or so. Plus, he went to bed with a red, itchy bottom. I keep slathering Desitin on him, and even put a layer of hydrocortisone this evening, so I really hope it doesn't turn into something worse before school. He'll have Kathy for ABA tomorrow and I hope he treats her well.

Nikko and I have been playing a variation on our tickle game. He asks specifically for "Cake" and then I say, "No more cake, only tickles!" and then I tickle him. He's been in a relatively good mood lately, even playing appropriately with dinosaurs when I've observed him unknowingly. But he still had two emotional outbursts within the last two days which I can't explain. I hope this week at school isn't affected by his itchy bottom. I also hope he will be able to concentrate at school and be productive.

Friday, November 26, 2010


We went to my mom's house for Thanksgiving lunch. She sang at the 10a mass and my dad was slated to work today, so lunch was at 1p so he could hang with us before having to leave at 2:30. This was, by far, one of the best Thanksgivings I have been to in the past four years/since having kids. What helped was that the kids were more self-sufficient in finding things to entertain them. They hovered around the kitchen a bit, but were able to play with toys in the living room as well as downstairs where the Penepacker girls were hanging out. Kind-hearted Rory was also playing with them so that was a bonus. I was able to help out in the kitchen with the food prep. Assembling the kids' lunch was not as nerve-wracking because we were able to accommodate their diets better. Ronin had plain mashed potatoes and loved it. Nikko scarfed down the buttery and creamy mashed potatoes. Audrey ate the mac cheese. And when the kids were finished, they went off to play with their cousins, still coming back to bug me now and again, but for the most part I was allowed to eat without anyone in my lap. Nikko waited around for strawberry cake and the others munched on shrimp chips. No meltdowns. Loved it.

We drove down to the other set of in-laws and arrived by 6p. My SIL has a new raised-ranch style house and it was very spacious. My kids were afraid of their dog Chase but thankfully were not debilitated like last time. Ronin was attached to Rex's Buzz Lightyear, Audrey was attached to a Jessie doll, and Nikko was carrying around a Toy Story 3 DVD cover. The most interesting part of the evening was after Maya finished entertaining the room with the karaoke machine. Audrey came up to grab the microphone and started singing Twinkle Twinkle Little Star. That inspired Ronin to grab the mike from her and sing the same song. What was also great was that Nikko grabbed the mike from Ronin and sang TTLS, garbled but distinctly TTLS. It was awesome! All three kids were hamming it up and TTLS became the song that would never end. We did diaper changes before leaving. This was the only part of the night that Nikko fell apart. He was holding a boat bath toy and a little plastic dog, which I made him bade farewell as we stood in the foyer to leave. Nikko protested loudly and was resisting leaving. I had to literally haul him outside from under his arms, sliding the toys to my SIL to put them far away. Nikko cried and wailed, but after putting on Toy Story 2 in the car he was more compliant.

Thursday, November 25, 2010

"I want" plus a new theory

I didn't get much of a chance to "sleep on it" (in reference to yesterday's depressing revelations) because Ronin woke everyone up at 6am. I suffered the rest of the day being tired and irritable, but caught a catnap with Audrey on the living room floor while Misty Island Rescue kept Ronin and Nikko occupied.

With Nikko's language therapy in mind, I was determined that when he wanted something, I would prompt him to say, "I want _____." Twice today he wanted a food from me and I would not give it to him unless he said "I want." He was requesting peaches and pizza, I believe, but not at the same time. When he would say, "Peaches, please." I would counter with "I WANT peaches please." He'd say part of the phrase, but I'd keep restarting it. Nikko caught on that I was forcing him to work and so he started to wail and scream, darting back and forth, down the hall and back to me as if he couldn't believe I wasn't going to give him peaches right away. I stuck to my guns, and in a big tearful yell-fest he screamed, "I WANT PEACHES PLEASE!" I praised him heavily and went to get his peaches. Simple. The same thing happened later for pizza, and it ended up in a screamed "I WANT PIZZA PLEASE!"
But you know what? The next time he wanted Mater's Tall Tales, or cheese puffs, he would ask for it by object, and then the second phrase coming out was preceded by "I want ______." He is totally capable of doing this. And maybe, just maybe, it is clicking stronger in his head that if he asks for something with "I want" before it, I will give it to him. I think he already knew this, but today I think he might be feeling the power of words just a little stronger. And to add insult to injury, Jenna told me after their ABA session that Nikko did AWESOME. He completed all the tasks, he was focused and had great eye contact. He was drawing lines straight down on a paper and it accidentally dragged onto the table. Jenna said he looked up at her with his eyes wide and his mouth opened in a circle as if to say, "Doh!" She had never seen him react like that, and I was warmed to hear it.

My Verbal Behavior book came from amazon today. I've got some reading to do.

I had a good feeling about Nikko today. But now I'm going to mess it all up by playing around with his bowels again. The miralax is working again, and by adding a little MoPo to the mix I can see his poop having that soft but fibrous texture to it. Starting tonight, I am going to test a theory. You see, Nikko's poop is soft and comes out all afternoon. He doesn't have just one movement and he's done with it for the day. It's akin to "leaking" out but not in a liquid form. "Squeaking" out? Hard to describe. But at every diaper change yesterday and today, there was poop. That's not normal. And I am trying to change it by adding or lessening that miralax, which is indeed a LAXATIVE so I have to remember that he will poop more frequently. So what's my theory? When Nikko wakes up, his diaper is poop-free generally, maybe up until lunch. And then he will have continual poops in his diaper throughout the afternoon. I don't want him to poop during preschool, because the kind-hearted Mrs. N has to clean him up. It's not easy wiping that kid, he's 40+ pounds. What I am going to try is switching when I give him miralax. It's usually in the morning, and I have to watch his juice like a hawk to make sure he drinks it all up. Many times he doesn't finish it until almost lunch, and that miralax is either not getting absorbed totally in one sitting so maybe that's causing this slow, dragging poopfest all afternoon. I am going to give him the miralax at dinnertime. In theory, when the body goes to sleep for the night, the digetive system slows down to a crawl. My hope is that the miralax will also slow down in his bowels, possibly working at a slower rate to form. And when it's time for him to wake up, the digestive system kicks into gear and he will poop in the morning. Maybe he will finish his pooping by mid-morning or lunchtime. Hopefully he will not need to poop during the afternoon. And I will reduce the miralax back down from 1/2 a capful to a 1/4 capful, to maybe reduce the frequency but still maintain some softness in his poop so he can pass it. In the morning, I will put at least 1/4 teaspoon of MoPo. I tried the digestive enzyme again this morning but it hardly dissolved in the juice so it looked lumpy. I don't even think Nikko wanted to drink it, and he definitely didn't finish it. At lunch I put a little more MoPo and put a teaspoon of fiber. At snack it was a drug-free cocktail. Then at dinner I put in the 1/2 capful of miralax. I really hope that he doesn't poop in the middle of the night, or that he doesn't poop upon waking up and then reach in to scratch because he feels uncomfortable. I will probably go crazy if he smears his poop in the morning, so I hope to intercept him. I've been setting the alarm for 7a every morning for this very reason, because sometimes he'll pee in his diaper and if it gets full while he's alone in the room, he'll strip. It's happened a few times already. I hope he's not waking too much earlier than 7a, because I don't want to set the alarm for 6:45.

So that's my plan. I hope it works. If it doesn't, then I'll be unplugging Nikko on Saturday or Sunday. Just so you know.

Wednesday, November 24, 2010

Mama Bear

Suffice it to say, I am even more depressed. We had our meeting with Nikko's and Ronin's teachers. It's always great to see them, and I was happy to spend just a few extra minutes with Nikko's teachers because Nikko needs more time. But after laying out the IEP goals, I just looked at them and said that overall the progress was slow. Painfully slow. There's some progress, of course, but he started out interested this year and now it has PLATEAUED. This is alarming to me. Especially as of late, Nikko's behavior seems to have backslid, possibly due to the infrequent constipation, but also for some unforseen reasons that no one can predict. The attitude when handling Nikko has literally been a "take it day by day" approach. I know the ABA team has been frustrated with Nikko's refusals to sit down at the table immediately and get to work. At school his attention span is fleeting. But the other alarming thing is his preparation for kindergarten. We loosely discussed what Nikko's options could be at the end of the year, but from what I am observing with my rookie eyes, I cannot fathom the idea of Nikko being in kindy next year, with or without an aide. I don't think he has the necessary skills, basically in any capacity, to sit in a classroom with many peers and retain a lesson being taught from a teacher at the front of a class. After lots of pondering and going back to my online village for insight, I believe that there will have to be changes made. Nikko can't keep going forward at the rate he is, because he's not thriving. After this Thanksgiving holiday, I will ask for a meeting with Linda H. and Maria to discuss how to reshape the ABA program, making it intensely language-based because in all reality, Nikko is not going to be able to move forward if he cannot communicate with anyone, peers or teachers. He can't express what he feels or what he wants unless prompted by an adult. It's such a hopeless feeling. I'm trying to shake it so that I can stay focused and do something.

Last night, after hours on the computer, I went to check on my babies before going to bed at 3am. I went into Nikko's darkened room and knelt down. He was facing the wall, snug in his blanket, and I started to weep. A year ago in December, Nikko started saying his first words. I was so elated. But I didn't jump at the opportunity to get him more help, to sign him up for private speech therapy in addition to the speech provided by the school. We signed him up for ABA and he started in January, but in hindsight I should have gotten him speech therapy since that was the biggest deficit. Heaving sobs and trying not to wake him, I put a hand on my boy's head and asked him to forgive me for not getting him better help sooner. Maybe his speech would be different today if I had gotten him intensive speech therapy. I'll never know. But now I have to fix it. I have suddenly become a Mama Bear, whether I wanted to or not.

Sunday, November 21, 2010

Preliminary Benchmarks + comments at end

I received Nikko's 1st trimester benchmarks update. I reviewed it and will post below, then follow with comments:

Each first semester benchmark is marked with achieved, making progress, introduced or not introduced.

By June 2011, Nikko will perform the following fine motor skills in 4 out of 5 trials:
1) copy and draw circle, cross and square
2) copy and draw an 8 body part person
3) copy and print first name.

State standard addressed: Use drawing and writing skills to convey meaning and information.
Present level of academic achievement and functional performance related to the goal: Nikko is able to copy and draw straight horizontal and vertical lines.
Benchmark or short-term objective: By November 2010, Nikko will perform one of the above stated skills.
Progress Report: Making Progress
Comments: Able to draw a circle and cross but square is emerging.

By June 2011 with visual cues as needed, Nikko will perform all steps of both the arrival and departure routines in 4 out of 5 trials.
State standard addressed: Show some initiative and independence.
Present level of academic achievement and functional performance related to the goal: Nikko can take off his coat and back pack and place them in the designated locations on most days, needing occasional reminders.
Benchmark or short-term objective: By November 2010, Nikko will perform all steps of the arrival routine using visual cues as needed.
Progress Report: Achieved

By June 2011, Nikko will be able to cut out preschool projects within ½ inch of the lines with verbal cues as needed in 4 out of 5 trials.
State standard addressed: Coordinate movements to perform complex tasks.
Present level of academic achievement and functional performance related to the goal: Nikko requires instruction on how to put on scissors correctly and then can repeatedly snip.
Benchmark or short-term objective: By November 2010, Nikko will be able to cut along an 8” by ½” straight line with less than 2 errors.
Progress Report: Achieved

By June 2011, Nikko will spontaneously use 4 word utterances to express his wants/needs in the classroom setting in 4/5 trials.
State standard addressed: Communicate needs, ideas and thoughts.
Present level of academic achievement and functional performance related to the goal: Nikko is inconsistently expressing wants/needs in the classroom with single words/signs/gestures. He often needs adult prompts to use his words.
Benchmark or short-term objective: By November 2010, Nikko will spontaneously use 2 word utterances to express his wants/needs in the classroom setting.
Progress Report: Making Progress

By June 2011, Nikko will demonstrate 3/3 of the following skills:
1) identify 5 emotions
2) demonstrate understanding of object function
3) demonstrate understanding of big/little, hard/soft, over/under, behind, top/bottom in 4/5 trials.

State standard addressed: Listen with understanding and respond to directions and conversations.
Present level of academic achievement and functional performance related to the goal: Nikko demonstrates understanding of happy. He is not demonstrating understanding of object function and prepositions.
Benchmark or short-term objective: By November 2010, Nikko will demonstrate 1/3 of the following skills: 1.) identify 5 emotions 2.) demonstrate understanding of object function 3.) demonstrate understanding of big/little, hard/soft, over/under, behind, top/bottom
Progress Report: Achieved.
Comments: Demonstrates understanding of object function with pictures.

By June 2011, Nikko will answer yes/no, who, what, where questions accurately in 4/5 trials.
State standard addressed: Communicate information with others.
Present level of academic achievement and functional performance related to the goal: Nikko is able to choose between two items with objects or picture choices. He is not yet answering yes/no or “wh” questions.
Benchmark or short-term objective: By November 2010, Nikko will answer yes/no, who, what, where questions accurately when given picture cues.
Progress Report: Making Progress.
Comments: Nikko is able to answer “what” questions but only with picture cues.

By June 2011, in the classroom setting, Nikko will demonstrate 3/3 of the following skills in 4/5 trials:
1) ask for help appropriately
2) respond to greetings from others
3) protest appropriately in 4/5 trials

State standard addressed: Communicate needs, ideas and thoughts.
Present level of academic achievement and functional performance related to the goal: Nikko requires adult prompts to ask for help and respond to greetings. He continues to whine or cry to protest.
Benchmark or short-term objective: By November 2010, in the classroom setting, Nikko will demonstrate 1/3 of the following skills in 4/5 trials: 1.) ask for help appropriately, 2.) respond to greetings from others, 3.) protest appropriately.
Progress Report: Making Progress
Comments: Nikko continues to need adult prompts to ask for help, greet others and protest appropriately.

By June 2011, Nikko will attend to a 7 minute teacher directed activity with no more than one verbal or picture cue in 4/5 trials.
State standard addressed: Begin to understand and follow rules.
Present level of academic achievement and functional performance related to the goal: Nikko attends to preferred activities but it can be difficult to maintain his attention to nonpreferred tasks.
Benchmark or short-term objective: By November 2010, Nikko will attend to a 7 minute teacher directed activity with no more than 5 verbal or picture cues.
Progress Report: Achieved.
Comment: Met for preferred activities.

By June 2011, Nikko will do 3/3 of the following:
1) expressively identify 5 shapes
2) expressively identify 8 colors
3) count 10 objects with 1:1 correspondence in 4/5 trials.

State standard addressed: Sort and classify objects by a variety of properties.
Present level of academic achievement and functional performance related to the goal: Nikko is able to match colors and shapes and color naming is emerging. He will imitate counting objects but he is not yet doing it independently.
Benchmark or short-term objective: By November 2010, Nikko will do 1/3 of the following, 1.) expressively identify 5 shapes, 2.) expressively identify 8 colors, and 3.) count 10 objects with 1:1 correspondence.
Progress Report: Achieved
Comments: Has mastered 3/3 skills.

By June 2011, Nikko will engage for 5 minutes in simple pretend play using props (cars, dolls, trains, kitchen toys) for their intended purposed in 4/5 opportunities.
State standard addressed: Begin to share materials and experiences and take turns.
Present level of academic achievement and functional performance related to the goal: Nikko is playing in many areas of the classroom and is just starting to play for longer periods of time. He is not yet linking play schemes together.
Benchmark or short-term objective: By November 2010, Nikko will engage for 5 minutes in simple pretend play using props (cars, doll, trains, kitchen toys) for their intended purposes given adult set up and verbal prompts as needed.
Progress Report: Making Progress
Comments: Nikko is engaging with more play material but is not including other children yet in his play.

Nikko is working. It's hard. And it shows. He was able to achieve the two functional goals (arrival routine, cutting with scissors) but all the other goals seem to pose challenges involving communication, expression and attention. His speech is slow, of course, and he is not using more than 1-2 words. He also needs adult prompts to use his words. At home, I can tell that he is searching for the right words to request something. I can see some progress even today. We started out the day with him wanting a pop tart. I emphasized that it was a chocolate pop tart. Each time he wanted one, he would come up to me and wait, and when I squatted down to his level to ask what he wanted he'd start a jumble of sounds in the same vein as the bread and cheese sandwich request, but it would sound like "Dohdododluluhluh choc-lat poptart?" I would reward these attempts, of course. Object function and prepositions are a problem area. Yes/no and the wh questions are problems. Asking for help, greeting, and protesting appropriately are problems. Pretend play and playing with others is a problem. JUST ABOUT EVERYTHING IS A PROBLEM. What can I give Nikko to help enhance his mind? What can I give Nikko to help fuse those synapses that are misfiring or flitting loosely in his brain?

Tonight I hauled out my big box of photo cards from Lakeshore Learning and started quizzing the kids on food items, animals and some household items. I lost Nikko's attention somewhere in the middle of the food, probably after Pizza. He left the circle and played on his own with his toys, sometimes looking up when I asked colorfully, "What is THIS?" or "What IS this?" or "WHAT is THIS?" He wouldn't always respond to his name when I called out to him. Meanwhile, Ronin and Audrey were eager to name everything and receive high fives.

I think we should start looking into private speech therapy for Nikko. And I just ordered a book on Verbal Behavior that should arrive this week. Nikko needs MORE.

Ugh, this is getting depressing.

I heart Nikko's preschool teachers

11/19/10 School report - Speech: We worked on greetings - happier about it today! Loud hi's. We worked on requesting, I see ____ & emotions.
Bathroom: Nikk had poop in his pull-up. It was slightly formed and soft. It was yellow and a decent amount. Nikko pooped a second time. There was less poop and it was soft brownish yellow. I put vaseline on his bottom. Nikko pooped a third. It was soft, brown & mushy. I applied more vaseline. -DN

And that is how great Nikko's preschool team is. They gave me such a detailed report because they know I need (prefer) to keep track of these things. I don't think I'll get that kind of teamwork as he progresses into the higher grades at school, but I'm so terribly appreciative of it now!

Friday, November 19, 2010

What's this?

School report - Speech: Greetings - great with high 5's - multiple prompts to say hi. What ? with pix, songs, body parts, reading a book.

This morning I greeted Nikko in his room. I think he enjoys sleeping under the big comfy Costco blanket I got for him. He hardly budges. It was early and no one else had stirred so I sat on his bed cuddling with him and asked him about the objects in his hands.
"What's this?"
"Strawberry Shortcake."
"What's this?"
"Birthday cake."

And later in the morning while watching TV, Mickey Mouse and Pluto were flashing on the screen. I pointed to the TV and said, "What's that?"
"Dog," Nikko said in reference to Pluto.
"And what's that?"
"Mickey Mouse."
The fact that Nikko is following where I am point to, then naming what he thinks I might be referring to, is awesome. :)

Sarah came for ABA and Nikko was lukewarm to start. She later told me that he was whiny in the beginning but eventually she was able to coax him back to the table. It was an ok session, and while Thanksgiving is next Thursday she said that she's not doing anything in the morning and could come over if I wanted her to. We aren't busy, either, so maybe I will take her up on coming over, even though it is a holiday. We won't be rocking and rolling until after lunch anyway.

***TMI ALERT***Nikko started out this second day of no poo. I told him that if he didn't have any bowel movement today, I would have to unplug him tomorrow morning and I really didn't want to do that. Don't know if that made any sense to him, but right as we were putting on socks and shoes I discovered that Nikko had a little poop in his pull-up. Not much, but it was something. That added to my stress, but I was glad he pooped a little. Later in the evening he had two slightly bigger poops, but they don't put me quite at ease yet. I think tomorrow (Friday) I need to see some serious poop in order for me to be comfortable with the 1/2 capful of miralax. Maybe 1/2 a cap is too much? Don't know yet. I'm giving it 1-2 weeks or one full poop cycle, whichever comes first. Man, only an ASD family would talk so much about poo!!

Thursday, November 18, 2010


School report - OT: Good session. Did lot of swing activities - Nikko would tell me when to go (push swing). Also worked on making faces and "Ni" in salt tray. Last - worked on cutting.

Don't know what the Ni is about, but maybe it's meant to be his name? In ABA, Kathy told me yesterday that Nikko was getting better at saying Yes and No to things. I was surprised because that's not something he does upstairs. I'll have to start asking him Yes or No and maybe using those PECS pictures from it. A new senior line person from MGB Services came to observe Nikko's session with Jenna. Her name is Rebecca. When Nikko saw this stranger (tall, too) come into the kitchen I think he got upset because I could see his furrowed brow and he started to whine like he didn't want to go work. Later, I was told that he still had whiny moments but overall he did all the work.

Sometimes Nikko comes up to me and starts leaning on me while asking for something that he's not sure he's going to get. It's almost as if he's trying to butter me up before asking for the questionable item. Those items in the past have been cheese puffs, candy and yogurt. Today it was yogurt. He's looking me square in the eye but also has a smile on his face (a sweet, sly smile) as if he can charm me into giving him what he wants. It's really kind of nice, except when it's candy he's asking for.

As for bowel movements, there were NONE today and so I'm on high alert. I put 1/2 a capful plus 1/4 teaspoon of MoPo in his morning juice and watched him until he finished it over a period of an hour. I sure hope his intestines are taking some time to solidify whatever he's eaten, the pizza and stuff, but if he doesn't have some kind of bowel movement by tomorrow afternoon then I'm going to worry until the evening and pray I don't have to take drastic measures. Again. And so soon.

Wednesday, November 17, 2010

Backed up again

*************TMI ALERT************
OK. Until I get Nikko to see a doctor, be it the holistic one or some other one, I am going to increase his miralax dosage to half a capful. I'll still put in the MoPo because there are probiotics in there. I will look into another probiotic if this doesn't work.

As I predicted, Nikko seemed to be backed up this morning. His poop has been peanut butter smears that are soft and not longer or thicker than my thumb. With all the fiber he ate yesterday, it had to be somewhere. I committed to unplugging him if he went into his therapy session unsuccessfully. He started out the session fine, but toward the end he got upset and crabby after Kathy took up him upstairs for a diaper change. I had to continue the unplugging after Kathy left. It took two big movements, not at the same time either, and not painlessly. :( What I saw was Nikko's poop wasn't rock-solid, wasn't resembling a small apple or even a pear. It was soft and mushy, like the wheat bread he ingested since getting sick. But why he needed help pushing this stuff out is beyond me. Why did it need a suppository to get the muscles moving? Is something broken in there? Maybe his motility is slow? And I'm looking up the definition of megacolon. How to fix that??

I sent Nikko to school in a diaper instead of a pull-up just in case he had another big bowel movement. He seemed to be ok when he came home from school, but he also didn't have any more bowel movements. I wonder if we can start at ground zero again. I hopped onto the computer tonight to do more research on constipation and miralax, and my conclusion is above. Other buzzwords I came across, as helpful tips or things to look up: CLO (cod liver oil), aloe vera juice, probiotics, blackberries, FloraBoost, Culturelle, motility, megacolon. I didn't get any notes in his backpack specifically about his bowel movements, and they sent back his diapers so I figure they are going to be ok if he continues to wear pull-ups in class. I'm really hating all this.

On another note, Nikko had swim class today. He's been vocalizing a lot, singing a lot, and asking for his new bread and cheese sandwich concoction by saying, "Ba la la la la cheese sandwich?"

Monday, November 15, 2010

Ronin's innocent question

Ronin and Nikko were sitting next to each other trying to put wooden train tracks together. They were also grabbing at train box cars, specifically the ones from IKEA that fit better under a tunnel than the Thomas ones. At one point Ronin and Nikko were vying for the same black engine when Ronin turned to me and said quizzically, "Why doesn't Nikko talk to me?"

I think my heart broke a little bit.

"Because he has a hard time talking," I replied. "But you can help him talk."

The moment disappeared when I helped them split up the trains between themselves and the boys focused solely on their own tracks. But in hindsight I felt a big pang of loss for Ronin, who didn't have the role-model older brother that he should have. It reminded me of Nikko's meltdown at the soccer birthday party and how he stuck out from all the other kids there. At four years old, it's really evident that he is not like other four year olds, lacking a bigger speech component, bouncing around and flailing his arms while bobbing his head in an attempt to regulate to his surroundings, or maybe bopping to the music in his own head. I'm just feeling really cheated right now.

Sick Day and Soccer Party

11/12/10 - School Report - Speech: Greetings, "I see a _____". Where ? with pix. Improved attention with books - will imitate phrases to describe pictures in story.

11/13/10 - So much for status quo. On Saturday morning I saw Nikko sitting on the couch watching TV. An hour later he was still sitting in the same spot. That's very usual for Nikko and I wondered if he was ok. He soon moved to the floor and was watching TV with his head resting on the floor pillow or blanket. Sometimes he'd chatter but mostly he was silent. During lunch he ate spinach ravioli but didn't stay at the table for very long. And in the early afternoon he looked sleepy and found a cozy spot on Audrey's big blanket in the middle of the living room. But after an hour nap he woke up and remained laying in the fetal position, arms tucked between his knees. I took his temperature and it fluctuated between 99.6-100, so that explained why he seemed so lethargic. I had to cancel taking the kids with me to a party at one of our GNO friends. Denis was slated to go watch the Pacquiao boxing fight at a friend's house, but I asked him to bring home some McDonald's because I felt bad that the kids didn't get to go to this party. And then at some point Nikko stood in the doorway of the kitchen and threw up his lunch. My poor boy was sick and lethargic, totally uncharacteristic of Nikko. He slept some more in the early evening and still managed to go to bed at the regular bedtime, but not without throwing up any remnant french fries. I wondered if the other kids would pick up whatever tummy bug he had, and worried that Nikko would have to stay home on Sunday while we were planning on going to a birthday party at a soccer facility. I gave him Tylenol and hoped for the best.

This morning, Nikko started out a little slow and in the fetal position again, but after breakfast he seemed to perk up and by lunchtime he was no longer sick-acting. I don't know what it was, but I'm glad it's gone!

******TMI ALERT****** My concern now is that during his sick day, Nikko couldn't hold down any food. He had one big pee diaper but no poop. Today he was incredibly thirsty at breakfast, and his hunger returned as he ate a few cheese sandwiches (cheese spread on croissants) and cheese slices on wheat bread. Both morning I had put miralax in his juice and a little MoPo, but he only had a small poop this afternoon before we went out. I thought he had pooped before we left the party because I smelled something, but his diaper was empty at bath time. That makes me worry because sometimes it will smell like he pooped but there will be nothing; the poop could be blocked and can be smelled when he's trying to expel it but it's not coming out. SO, that means if he doesn't have a proper bowel movement tomorrow then I'll have to try unplugging him on Tuesday. There's no way with the amount of cheese sandwiches he ate before lunch time that it would take more than a day to exit.

The soccer birthday party was at a fieldhouse facility that was geared specifically toward this concept. It was covered in AstroTurf, had air-filled barriers between fields and a bouncy jumper-house in the corner that was being occupied by another party of kids. Audrey wasn't thrilled to be there at first and clung to Denis, but Ronin seemed to warm up to the employee who was our host/Coach. Nikko also seemed interested in the activities at first and I ran beside him during the drills so he would be able to appreciate how FUN everything was. The birthday celebrant was a cute, 2-year old whose father was former co-workers with Denis. I didn't know any of the other parents or kids so I concentrated solely on our kids. Ronin kept asking about the bouncy jumper but I told him it probably wasn't something we could visit since it was flooded with kids from an adjoining party. The problem started when Nikko took full notice of the bouncy jumper. He wanted to go to it. He kept pulling me toward it. He started to whine and jerk my arm harder. Redirection to another part of the field house wasn't working and he was getting louder and screechier. Thank goodness Denis was able to stay with Ronin and Audrey so I could give Nikko my full attention at trying to placate him, giving him deep pressure hugs and looking to engage him in soccer ball fun. I took Nikko outside at one point just to get some air and this was at the height of his screaming. Nikko was squeezing his eyes shut and screeching through his teeth, flushing and fuming. We went back inside and again I took him to he opposite corner of the field house, away from the crowds. Thankfully he wasn't trying to bolt away from me and head helter-skelter to the jumper. I put him on an air-filled bumper and teeter-tottered with him, giving him a tissue to wipe his eyes and nose. He took it from me and I think it was the start of calming him down. I saw that the Coach was blowing bubbles for the kids and was able to coax Nikko to the fringes. At the same time, the loud generator used to air the jumper shut off and it was deflating. I think Nikko saw the deflated jumper and thought it was broken. When the Coach started his finale by involving most of the kids in a parachute game, Nikko was calm and accepting of the tissue to wipe his nose repeatedly. I'm glad we didn't have to leave the party. There were other kids there, mostly three and under except for a few slightly older boys, but Nikko's tantrum wasn't looked at by many, thank goodness. I had also put on my blinders so the only thing I was focused on was Nikko. I would normally be in a panic about Nikko's tantrum, but because I knew that the other two kiddos were in Denis' care it made things much easier for me. By cake time Nikko was fully recovered from the tantrum.

Wednesday, November 10, 2010

PEPS and poop (ugh)

11/9/10 - School report: Speech - body parts, greeting, worked on "I see ____" walking through the building. Worked on "what" questions with picture choices.

Last night I went to the monthly PEPS (Parent Education and Parent Support for Special Services) meeting. There were two speakers there, social workers from both the Lyons and Westbrook schools. The main topic was regarding peer interaction. It was nice to hear other moms talk about their school situations with their child, but I also felt some anxiety when thinking about how Nikko may or may not have friends in the future. Socialization is so crucial to ASD kiddos, as well as the academic component. I tend to drill on vocabulary, numbers and colors, but it's equally important to make Nikko interact with other kids. Thank God Denis has Nikko enrolled in a swim class, and thank God the neighbor kids understand that Nikko is different when my kids play around with them. They are big-hearted kids, that Brianna and Alex, and I am eternally grateful for their kindness toward all my kiddos. Anyway, I hope to attend the next meeting in February and learn more from the moms, especially the ones who have older children. I'd like to get some insight into what Kindergarten and 1st grade would be like for an ASD kid in this district.

11/10/10 - School Report - OT: working on sequencing 5 part obstacle course. Did lots of movement and heavy work activities. I sang louder than Nikko and he looked at me strangely and then stopped his vocalizations. Also worked on cutting & drawing. *Making clicking noises.

Yeah. The clicking noises. He sounds like he's trying to speak like a tribal member from somewhere in Africa. It's some kind of verbal stim and he seems to insert it into his daily routine when he's transitioning between rooms or activities. He'll start clicking when I'm trying to ask him what color something is. It's like a replacement for "Ummmmmmm." Maybe he likes how his tongue feels coming off the roof of his mouth. But then what about the random hissing sounds he also makes? It sounds like he is gritting his teeth and trying to push air and spit through them. The hissing seems to happen when he's starting to get motoring and physical. At least he's not drooling excessively.

Today at 4:10p I got a phone call from Mrs. McCarthy. She told me that Nikko had a bad day at school. He was unfocused and distracted, wanted to just sit on Mrs. Napoleon's lap and cuddle, and he can't always get what he wants so cuddling was out. He just wasn't cooperative today and she knows that I like to keep track of these things so she gave me a call. (What a great teacher. *smile*) I wondered if he would be in a terrible mood for Jenna since he had ABA when he came home. I thanked her and kept wondering if he was constipated. How could he be? He was having poop throughout the day even if it wasn't a lot of poop. I realized that I had been trying so hard to get the MoPo into Nikko's juice, adding 1/4 of a teaspoon and really mixing it well, that for two days I didn't put any miralax to accompany it. I have seen him "perching" over the couch or table, but am still able to get him to sit down to eat if I pull out his chair so I didn't think he was in pain. Maybe he really is. His session wasn't great, either. Jenna wrote that he was whiny but when she got him to sit down he was able to complete his tasks.

11/11/10 - At 8am I heard Nikko grunting in the living room. I looked around the corner to observe him and he was hunched over the ottoman with a slight strain on his face. I was crestfallen because Nikko was constipated and Sarah was coming over at 8:30 for ABA. I really hated to have to unplug him before a session but knew that I had to get it going or he could have a very unproductive time with Sarah again. I started the suppository at 8:16a and held Nikko facing me in my lap until he could have a bowel movement. He didn't want to go willingly. Sarah knocked on the screen door at 8:30a and I had her sit in the living room with us, watching Handy Manny while Ronin and Audrey were doing silly stunts amid a screechy, whiny Nikko being held in my lap against his will. I was very apologetic to Sarah and I wondered if she had ever seen anyone do this to their kid before. I hope I didn't look like a lunatic mom. It took another 15 minutes but Nikko painfully passed a big poop. I dried his tears and tried to soothe him and change him, told him to go drink some juice before we all went downstairs for therapy. Luckily, he went willingly with Sarah and was not acting like he hated me for putting him through pain. Ronin and Audrey were fighting and crying over some stupid Lego Duplo blocks so I had to contend with them upstairs. Nikko's session went well, according to Sarah. She told me that he didn't want to sit down so she brought the drills over to him, and he was still able to accomplish them. Right when they finished he had another bowel movement, a messier one which I had expected sooner than later. Nikko was in a good mood when he came upstairs after ABA so now the universe is back to status quo and I have another chance to screw up his constipation progress.

Monday, November 8, 2010

MoPo ***TMI ALERT***

********TMI ALERT********
Something's happening. I can see it, but not sure what it is.
The Motion Potion came in the mail on Saturday. It took about a week to get here from Australia. It's from a company called HealthKultcha and the label reads: Motion Potion. Nutritional Bowel Food. More Than Just Fibre. Contains Herbs, Pre & Pro-Biotics. 100g. It's not white and odorless, like miralax. It's got a sweet, herbal scent and it's a mustard color. The first ingredient on the list is Psyllium husk powder and I started worrying if it was like the psyllium in Metamucil. I tried Metamucil for Nikko and it was gelatinous and gloppy at the bottom of his glass. It wouldn't go through his straw. How was he going to drink this stuff? At lunchtime I put 1 teaspoon in his grape juice, undiluted, and mixed it up. I could see the powder settle to the bottom and worried again. I don't know if Nikko sensed my anxiety over his juice because he seemed to take the tiniest sips. My heart sank because if Nikko doesn't ingest this stuff, it won't work. He had miralax earlier in the morning so he still had some poop during the day. I told myself that tomorrow (Saturday) I will put 1/4 teaspoon of MoPo, plus a little bit less miralax so that he doesn't suddenly become blocked up if I went cold turkey.

Today's breakfast juice didn't seem to move as quickly either. I moved his juice into a sippy cup with straw so that he could slurp up powder from the bottom, but I think he may have caught on to the taste. Still, as I changed his poopy diapers today I noticed that the consistency of his poo was changing. It wasn't as peanut buttery. It was looking fibrous, but still soft and mushy. It certainly had a strong smell to it as well, but it wasn't an unfamiliar smell. Could the poop have changed even by drinking just a little of the MoPo? I will continue to put 1/4 teaspoon of MoPo in his juice and phase the miralax out slowly. My goal? To have well-formed poops that are solid but not hard.

And maybe I'm psyching myself out about this, but Nikko woke up today and was singing Happy Birthday to himself until I opened his door. He was chatty and friendly throughout the day. There are times when I'm sitting at the table and he'll climb up onto my back, lean over my shoulder and try to engage me with his eyes and giggling. Imagine that, HE is trying to engage ME. Just last night at dinner he saw that Audrey had hot dog slices on her plate, so he came up to me and stood. I asked, "What does Nikko want?" He said loudly, "DOG. HOT DOG." Then ran away when I praised him loudly. Of course I gave him hot dog cut up in chunks and he didn't finish them, but I was so happy about the exchange. Today he saw peaches on Audrey's plate and came up to me saying and signing, "Peaches, please." That's always awesome. What's not awesome is when he asks for Cheese Puffs, Cookies, or worse, Candy. Can't win 'em all, I guess.

Saturday, November 6, 2010

Hunny Bunny

School report: Speech - Greetings. Good with "I did it" after puzzles! Naming pix, body parts.

When Ronin was going to the potty for #1s and #2s and made successful attempts, he would proclaim loudly with his fists in the air, "I DID IT!" Then we'd have to sing his song: Yea for Ronin, Yea for Ronin/he went pee pee/in the potty! Yea! Yea! Yea! Yea! Yeeeaaaaaaa for Ronin! I'm sure that Nikko and Audrey were listening not far away. Both kids were able to sing the song afterwards, and Nikko started saying I DID IT when prompted. I hope he is starting to generalize that phrase if he hears it at home, then hears it at school, then associates it with an accomplishment. I've got to break out the photo cards again, and build some vocabulary with him. I want to do it when Ronin is not around because Ronin is very good with vocabulary and I don't want Nikko to feel overshadowed. It happens a lot when we read books.

Audrey received a package yesterday; it was a little plush baby in a pink bunting with bunny ears from our friends Pat and Gail. The baby is aptly called Hunny Bunny. It's Audrey's, but Ronin became attached to it and was carrying it around for most of the day. Today, Nikko took the baby out of the bunting and started carrying it around. Ronin got upset and wanted it back, but I had to redirect Ronin and tell him that he could play with Hunny Bunny later, since Ronin had him (or her) all day yesterday. I could see that Nikko was very comfortable holding Hunny Bunny in one hand and had a sinking feeling that he wouldn't let it go easily. Ronin was pretty good about letting HB go, even though it took a lot of tears and persuasion. I feel bad that many times, or rather, most of the time, I have to tell Ronin or Audrey that Nikko is not going to give up a certain toy and that they should go and play with something else. Or I'll tell them that Nikko will play with said toy for only a little while, and will soon forget about it. The problem is I am never sure if/when Nikko will give up a toy. When Nikko is holding a toy that the other kids want, I can tell from a little push/pull whether or not Nikko is going to be flexible about giving it up. Usually he is NOT. When I do go ahead and take the toy away from Nikko to give to the others, Nikko gets upset, pissed off, angry, and physical. Even if I drag him away to another room or try any form of redirection, if Nikko wanted that toy badly enough he will find a way to tear himself away from me and get back to that toy. Explaining sharing doesn't work. Explaining consequences doesn't work. That being said, today I witnessed something unusual. Audrey was playing with a little toy car. Nikko came up to her, looked at the car and took it away from her. She started crying and getting visibly upset at Nikko, tears streaming down the face, loud wails. He looked at her in wonderment and then handed the car back to her. The crying stopped and he moved on. This happened twice today. I wonder if he was sorry that he made her cry, or if he was figuring out that if he takes the car away from Audrey then she will cry; give the car back and she will stop. It's too bad that it becomes such a loaded experiment with feelings, tears and taken toys on the line.

By the way, Nikko had intentions of bringing Hunny Bunny to school, but I made him put the doll in his backpack before getting on the bus. We discovered his plastic dog bone in the backpack so I traded him the bone for the doll to hold. After the kids came back from school, I released Hunny Bunny back into the living room and Nikko didn't pay it any attention at all. Ronin was happy to have the baby back.

Friday, November 5, 2010

Sarah's back

School report: Speech - improving with body parts. Sorted new categories. Good job.

This morning Nikko had ABA with Sarah, who had left for school in the fall but came back. According to her notes, he had a rough session the first hour, but eventually came back to the table and they were able to finish on a good note. She told me later that Nikko kept running back to the slide and crawling under it. She thinks he was just getting used to her again since it's been months. I heard some sporadic whining but didn't know he was crying and protesting as well. Sarah said she started out by bringing the drills to him, but later was able to lure him back to the table. Too bad the session wasn't a complete success, but my hope is that having three different people see Nikko consistently will give him some variety. Seeing Kathy twice could lead to boredom for him and burnout for her. I hope three times a week is enough for now. Nikko does a lot of singing and scripting when he's not at school or not in therapy, but it's also not consistent. If he needs help in the living room, such as tonight when Audrey was playing with the toy farm house and was barring Nikko from opening the main barn door, he came to get me and pulled me to the barn. I had to prompt Nikko to say Help. He didn't point to Audrey or tell me her name or for her to stop. He just dropped me off at the edge of the chaos and I was supposed to figure it out before he started whining. I guess I could ask him some key phrases like, What do you need? Help? Who is it? What do you want? You want door open? Open door? Something like that. Nikko is able to make out most of the lyrics to Special Agent Oso. He sings it like Audrey does.

Thursday, November 4, 2010

Getting back to normal

School report: OT - Saying "I did it" lots. Worked a lot on drawing shapes, faces & persons. Finished with cutting practice.

Kathy's session on Tuesday was OK. Nikko sat on the floor at the beginning and didn't try to bolt upstairs, but there were intermittent periods of whining that didn't last long. Overall, his session was ok but he was not as focused as in the past. After lunch I gave the boys their haircuts. I put them in front of the laptop watching some Pixar short tales, but Ronin wanted to watch monster truck clips. Nikko wasn't sitting very still for the buzzer so I had to placate them with lollipops. It was a success, after all.

Today the universe was put back into order because the kids went back to school. Having these school improvement planning days makes for a very long week! The boys were sleeping on the ride back and I worried that Nikko would be in a foul mood before Jenna came. Thankfully he had a whine-free session. I guess Nikko just had a crappy week last week, in school and during ABA. I've been using the miralax every morning, a little more than covering the bottom of the cap. He has been munching on pop tarts, but discovered my stash of strawberry pop tarts today. Luckily, Fiber One makes a strawberry pop tart that is 5% fiber, same as the fudge one, so I'm ok with him eating it. It's also for variety. Nikko remained in a good mood throughout the evening and I was able to leave for my Zumba class without a scene. I think when I tell him that I'll be back and g-bye, he is much better than if I disappear without a word. I've been conversing with Nikko and trying to get more eye contact from him. I still tend to turn his head toward mine when talking at him, and tickling usually elicits the most response. At home, he never seems very interested in fine motor skill activities like drawing or playing extensively with play doh. What I have noticed, however, is that he is more aware of his siblings and will interact if they initiate play with him. He has sat on the floor and played next to Ronin with cars or with building blocks. Today Audrey was laughing while dragging Nikko down the hallway by his sleeve. I told her to let him go, but they both seemed to be giggling about her dragging him around the house. I wonder what the punch line was, but I let them go off and be silly.

Tuesday, November 2, 2010

Halloween - a.m. meltdown, chocolate

On Sunday, Halloween, we didn't have any formal plans. I was still waffling with whether or not to take the kids TOT'ing or to linger at home. We went for a grocery run, however, and took a chance at going to both Costco and Jewel. We survived Costco with Ronin whining for monster trucks he saw in the toy aisle. I tried to avoid those aisles like the plague because things always end badly, but the heavy kid blankets I wanted to get were perched exactly on the corner of a toy aisle. Thankfully, Nikko didn't see one particular item and get attached to it. But when we arrived at Jewel he was at the beginning of whiny mode. We split up to shorten our trip and I had Nikko with me to get grapes and Pop Tarts. He was stimming by running up and down the cereal aisle, punching at boxes that I would have to pick up if they fell on the floor. Denis and I reconvened in the dairy aisle and Nikko picked up a carton of yogurt, refusing to part with it. I knew we could leave it out of the cart at check-out. We got to the self-check-out lanes and Nikko was in full cry mode. We are not sure what sparked it. He had all his toys in his hands and he wasn't really attached to the yogurt. Since he was the only screaming kid in the store I ordered Denis to take him outside so I could finish checking the cart out. He picked Nikko up and Nikko's screams reverberated throughout the store. The other two were quiet in the cart. Once back into the Pilot, Nikko was screaming and thrashing violently. I was so thankful that he wasn't taking shots at Audrey, but I was also trying to figure out why he was having a meltdown. I really couldn't figure it out so we had to listen to his crying all the way home and into the house. EVENTUALLY he calmed down inside while he sat in my lap, and minutes after that he was in the living room watching TV as if nothing happened. It's truly remarkable how so much energy is put into these meltdowns and when he's finished he returns to deafcon 5 while I am still recovering from it.

At 3:00p we took the kids outside to do yardwork and watch out for TOT'ers. Ronin had his hard hat on but I didn't put the others in a costume. I had no desire to take them anywhere and they didn't seem to mind at all. However, when the neighbor's girl Brianna came with a large group of kids, with Rachel watching them from the sidewalk, Ronin ran to me full of anxiety and said he wanted his bag. He wanted to go TOT'ing with them. Of course I didn't want him to be upset so I let Denis lead him away. Ultimately, Rachel took Ronin along for TOT'ing around the block. He was SO happy to tag along. When he came back to show me all the candy he got, I praised him and said, "And now I'll trade you that candy for a LOLLIPOP! ISN'T THAT COOL??" Ronin replied, "YEAH!!" so he took a DumDum and I confiscated his "itchy" candy and put it in the house. I wasn't as lucky with Nikko and Audrey, who seemed to thrive on eating chocolate. I definitely had to cut them off and neither of them stopped willingly. Nikko had no desire to put on a costume or go from house to house. Maybe next year will be better because Ronin and Audrey will probably want to go TOT'ing and Nikko will come along no matter what.

I didn't expect much from dinnertime since the kids had so many lollipops and candy. I think the candy affected Nikko because he wouldn't sit down at all. He lounged across the two fold-up chairs in the kitchen and hardly ate his pasta. He doesn't get chocolate often at all, so I wonder if it made him act differently.

Today he was in a good mood except for when Jenna arrived for ABA. Nikko let out a panicked whine and didn't want to stay downstairs at the beginning of the session. He was glued to the base of the stairwell. I finally left to let Jenna figure out how to get him back to work at the table. He did, eventually, and completed all his tasks even when he was crying through them. I really hope Kathy doesn't have this kind of problem tomorrow.