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.