1st Grade Jungle Music Program

Tonight was Nikko’s 1^st grade school musical. Jungle Music was the theme. Nikko had to wear a bright colored solid t-shirt, black pants, black socks and black shoes. A trip to Target earlier in the week solved the black clothing and I was happy that he fit into a very nice pair of dress shoes (he outgrew the socks and shoes he wore a year ago in San Francisco). I didn’t know what to expect when we sat in the school gym waiting for the 1^st grade classes to line up on the bleachers. Mom and Dad made a trip out to see him and I was happy that they came. The teachers led the kids into the gym and I saw that Nikko was standing on the 2^nd tier of risers farthest away from us. I took my phone for pictures and video, got up and scurried to the other side of the room. Nikko saw me and constantly turned to look at me. I ended up standing right next to Mrs. McCarthy, which was one of Nikko’s teachers from Circle of Friends –and one of my favorite people.

I wondered if Nikko would wander away from his spot on the risers but he only took two or three side steps out of place and wandered back. His teachers were a few feet away looking out for him. Out of all the songs I heard on the program, I think I saw his mouth move to The Lion Sleeps Tonight. He would watch his peers to see what hand movements they were doing, if they were stomping their feet or if they were lifting up their masks to cover their faces. Nikko did some random arm movements of his own as well. I was surprised when he and a few other kids were shuffled to the very front and center of the group, holding egg-sized shakers. He didn’t bolt, didn’t jump around and didn’t deviate from the group. Victory!

And then… at the end of a song, since he was standing a foot away from a floor microphone, Nikko stepped forward and said into the microphone, “Hewww-wooooowww” in a low, hearty voice. I started laughing as did Mrs. McCarthy. That’s my boy! Luckily, Nikko didn’t continue to speak into the microphone and they were ushered back to the 2^nd tier.

After the performance, I went to retrieve Nikko from the classroom in which I dropped him off. He was sitting next to his classmate Matthew. When Matthew saw me, he immediately turned to Nikko, tapped him on the arm and urged him to go to me. Nikko wasn’t paying attention but Matthew was being helpful and stayed by his side. I was very touched so I thanked Matthew for being so nice to Nikko. It breaks my heart that Nikko won’t always have nice people around to help him out in chaotic situations, so I really try to thank those who do act nicely toward him. Matthew is a gem.

I was really happy with Nikko and his behavior in the musical. I was so proud that he was able to stay in place and mimic the movements. I am relieved that he didn’t get frustrated or anxious about anything and start to have a meltdown.  A little over 100 kids were in the musical and Nikko was the only one flapping his arms randomly. There was one other child that’s in Nikko’s special ed class that reflected some special needs as well, but it made me sad to know that Nikko stood out when he wasn’t paying attention to his peers. I am hoping that as he matures, he’ll want to participate more and develop the language necessary to form relationships. It was a great night for Nikko overall.  

Spontaneous speech moments

Today was an interesting day of speech for Nikko. He had a few bouts of spontaneous speech and appropriate phrasing while interacting with someone. This morning, Denis was saying good morning to Nikko and was putting his face directly in front of Nikko's. I could see that Nikko was feeling crowded by Denis' face and I heard Nikko say, "Help."

Later in the morning, Ronin was watching Super Mario clips on Youtube when Nikko came over and was pulling at the recharging cord. Ronin got frustrated and started whining that Nikko was trying to steal the iPod from him. Nikko looked at me and said, "Give it to me." [I had to tell Ronin to give up the iPod and negotiated computer time instead.]

Some time in the afternoon I was asking Nikko what he wanted to eat for snack. He hemmed and hawed, and then he whispered while tapping his fist on the chair three times: "I want Lucky Charms." [The fist-tapping is to emphasize each word in a sentence. He can handle three-word sentences right now, so we tap a surface three times to ask for things.]

Finally, I told Nikko that we were going to play outside. He then asked, "Play in sand?" I told him we would definitely be playing in the sand. He was satisfied and eager to get out of the house.

Happy 6th Birthday, Nikko!

Nikko turns six years old tomorrow. After his OT at 9am I plan to first give haircuts (hopefully) and then take the kids to mom's house for lunch. The following is a ramble, with no clear objective other than to talk about Nikko.

He has grown up a lot this past year, and he survived Kindergarten better than I expected. He learned how to write his first and last name. His speech has improved overall. Nikko can ask for certain preferred things, or namely, food. He can also say NO very emphatically, whereas last year he wasn't able to utilize this skill. He is almost potty-trained, and that's a big thing for the entire family. #1s are good, #2s are still a work in progress. He's still missing the verbal component of telling me he needs to go to the bathroom. He'll just go off and start his business! He's smart and funny, innocent and mischievous. He gets into routines to a fault, but can manage transitions between activities much better than last year. Nikko's stronger, too, which means I have to be stronger than him. Eating habits have not improved much, as he remains picky about his food choices. But he is open to eating grapes and sometimes an apple, and this is important for snack times at school. I am so anxious about him moving into first grade. I think I'll always be anxious for him. He has come really far, and has further to go still. I have come to accept that Nikko will always stand out among his peers, but that being just like them is not the best thing for him. I want Nikko to be HAPPY. I want him to be able to communicate with other kids, and to play with them. I want others to see his goodness and not stare at him for making loud, squealing noises or running up and down hallways, stimming off the baseboards. I get weepy thinking about what he would have been like had he not had autism. But since that's not going away anytime soon, I swiftly kick myself in the butt and move on. He's got a life to live and I'm going to do everything I can to make him enjoy it.

Summer Camp starts

The summer has officially begun, and it's a busy one for the kiddos. Ronin & Audrey will be in a day camp 2x/week from 9:45a-1:15p. Ronin will also have gymnastics on Thursday mornings. Nikko will participate in the NWSRA's summer camp for the first half of the summer, MWF from 9a-2:45p. He will be taking summer school for the last half of the summer, M-Th from 8:45a-11:15a. Nikko's private ST and OT are dispersed throughout the summer as his schedule will allow. Finally, we are attempting to join a playgroup of Ronin's classmates that meets Tuesdays and Thursdays. VERY BUSY.

Today was Nikko's first day at the NWSRA camp and with a new counselor. We call him Mr. Tom, but he is a junior in college and this is his second year as a camp counselor. We got to meet him at last week's orientation. Even though I talked at length about Nikko's behavior and needs, I still had to jot down some notes and gave Tom a cheat sheet just in case. Some things I noted:
-Picture Schedule. He's very visual.
-Nikko can follow basic sign language.
-Nikko follows the FIRST _____, THEN _____ concept well, especially for transitions.
-Hard for him to pay attention and follow GROUP commands. 1:1 is better but can be improved upon.
-He can't/won't tell you when he needs to pee, so take him to the bathroom regularly. Make him go, even if he initially says no.

I was nervous dropping Nikko off because he was immediately covering his eyes and scripting garbled mumbo jumbo. I didn't want Tom to think he was a messed up kid! But when we picked Nikko up, he came out wearing a big, yellow construction paper crown and holding a foil-covered star wand. Nikko was in good spirits and apparently had a great day. He ate his lunch and snacks, loved the fountain feature at the water park, and went to the bathroom when instructed. Nikko wasn't upset or anxious when I saw him. I'll have to remind Tom to alert me if Nikko had any difficulties throughout the day, even if he had minor meltdowns. It's important for me to know this so that I can figure out ways to avoid triggers. Overall, I'm very happy that Nikko was able to walk away (albeit covering his eyes) with Tom, who was a complete stranger except for one brief meeting, and spend the entire day in a different environment.

Successful visits & spaghetti

Yesterday, I heard the toilet seat go "clink" and immediately knew that Nikko was there. He was poised and ready to sit on the toilet. I praised him for coming on his own, helped him sit down and then he proceeded to take a dump. Then he looked up and said, "All finished." It was the most normal poo-poo potty visit he's ever had, except that he didn't verbalize anything prior to his visit. I watch Nikko constantly between potty visits to see if he is straining, and I saw him hunched over with legs crossed about two hours prior to the potty visit. I kept asking if he wanted to go poo-poo potty and he kept saying no. I even put him on the toilet for 10 minutes after homework, adhering to our routine, but he still didn't go. I guess he actually went when he felt ready to go, which is ideal, but we need to work on him telling us that he needs to go to the bathroom.

One other recent development is his appreciation for spaghetti. Probably over a year ago, Nikko enjoyed some spaghetti at a relative's house and I hadn't been able to replicate it. It was simple noodles with red sauce and hot dogs. When I tried to make my own spaghetti, rich with chunky tomatoes, garlic and onions, he wouldn't eat it. So I believe it was back in December while at a church reception he divulged in a plate of spaghetti and tomato (red) sauce and loved it. It happened again at a playdate at his cousin's house. And so a few days ago I attempted spaghetti with him again, using a jar of 365 Organic Pasta Sauce from Whole Foods. Well color me purple, but Nikko loves it and has requested it for every meal for two days (except breakfast). The problem? I just ran out of sauce! I have to make a trip to Whole Foods tomorrow, OR get another brand, but I don't want to jinx our good luck, know what I mean? One more nice thing is that Nikko also does the sign for spaghetti just like he learned it watching Signing Time. It's like taking your pinky fingers and twirling long noodles of spaghetti. Very cute to watch. :)

What If

I played the dangerous What If game today...

I was finishing giving Nikko a bath tonight. He was really ticklish so washing his squirmy body was a challenge. He was squealing and belted out loud, high-pitched screams. His arms were flailing and although he gave me some spot-on eye contact to see if I was going to tickle him, they were followed with head rolling, darting sidelong glances and a litany of quotes from YouTube clips with gibberish filling in the gaps. As I helped him out of the tub, I looked at him and wondered....

If he didn't have autism, what kind of personality would he have?
Would he be chatty like Ronin?
Would he be extremely intelligent like his siblings seem to be?
Would he be having a regular conversation with me right now?
Would his movements be less jerky and with more purpose?

I put a towel around Nikko and he was so giggly and squirmy, spouting off a language that sounded like Mandarin Chinese. I felt a lump in my throat growing and my eyes getting teary. Then I told myself to get it together, mentally kick myself in the butt and move on. It only took a matter of seconds for my thoughts to spiral down into a dark place. But it serves no purpose to dwell on the What Ifs. They don't do anything except bring me down into a depressive state. Instead, I stifled my sobs and kept moving forward, wrapping the towel tightly around his shoulders for just a few more seconds before he became antsy and broke free to run down the hall. He dragged his two Linus blankets along and ran to Ronin's bedroom to slam the door shut. Then he raced past me in the hallway back to the bathroom to slam the bathroom door shut. Finally, he ran into his own bedroom and jumped excitedly on the bed, waiting for me to finish our post-bath routine.

Gastro visit / Poop routine

***I do NOT understand what formatting is going on halfway through this post, so I apologize in advance***

A week ago I took Nikko to see another gastroenterologist. It was a guy this time, and I'll start by saying that he was a nice one. He understood autism, and even tried to interact with Nikko with big smiles and talking TO Nikko. Nikko was wary of him, but eyed the doctor curiously when the doctor made these high-pitched squeaky sounds. It almost reminded me of dolphins communicating with each other. Our discussion was shorter than the amount of time we sat waiting for him, but it was informative.

In a nutshell, the doctor told me what I should do, but didn't want to do. And that's how I learn, folks.

The doctor said that Nikko had encopresis, which is very common with ASD kids. This is an excerpt from wikipedia, which defines it: Encopresis is commonly caused by constipation, by reflexive withholding of stool, by various physiological, psychological, or neurological disorders, or from surgery (a somewhat rare occurrence).

The colon normally removes excess water from feces. If the feces or stool remains in the colon too long due to conditioned withholding or incidental constipation, so much water is removed that the stool becomes hard, and becomes painful for the child to expel in an ordinary bowel movement. A vicious cycle can develop, where the child may avoid moving his/her bowels in order to avoid the "expected" painful toilet episode. This cycle can result in so deeply conditioning the holding response that the rectal anal inhibitory response (RAIR) or anismus results. The RAIR has been shown to occur even under anesthesia and voluntary control is lost. The hardened stool continues to build up and stretches the colon or rectum to the point where the normal sensations associated with impending bowel movements do not occur. Eventually, softer stool leaks around the blockage and cannot be withheld by the anus, resulting in soiling. The child typically has no control over these leakage accidents, and may not be able to feel that they have occurred or are about to occur due to the loss of sensation in the rectum and the RAIR. Strong emotional reactions typically result from failed and repeated attempts to control this highly aversive bodily product. These reactions then in turn may complicate conventional treatments using stool softeners, sitting demands, and behavioral strategies.

I'll be the first one to admit that I didn't think Nikko withheld his poop. I didn't understand how a child could hold things back way up high in his intestines of his own accord. It's possible that constipation was/is causing buildup to impact, but I was looking for the reason WHY and how to solve it. I wondered if it was just an issue of motility. Why was Nikko able to push out the impacted poop with the aide of a suppository each time (the laxative caused cramping for it to happen) but couldn't seem to do it by himself?

Two nights before the appointment Nikko was finishing a bath, leaned over and expelled a compacted poop in the tub. I was surprised because he had never done that in the tub before, but it also showed me that he's fully capable of pooping without a suppository.

Back at the doctor's office, he told me to stop helping Nikko poop with a suppository or even with enemas (haven't done that since last year under Dr. Nelson's watch). The doctor took me by surprise and first asked me what kind of education Nikko was getting. That was such a weird question to me, but he explained that he can treat Nikko for the constipation, but Nikko would benefit from being understood by teachers that understood autism. He said that nowadays the knowledge about autism is so much better and more specific that those who care for ASD kids should be very well-versed in autism so they know how to handle it. I think he was championing an environment that was autism-specific, and it definitely gave me pause. He spoke about Sensory Integration and how important it was for kids to be in tune with themselves, including their bodies, and being bombarded with sensory overload was compromising his progress. He asked if Nikko's OTs were versed in autism. I said that they were, but other people on his team were not. Definitely food for thought.

Then he went back to being clinical and basically said that Nikko had encopresis, he'd give me a printout all about it, and then he recommended that Nikko start a schedule of sitting on the toilet after breakfast for 5 minutes as a start. Use a timer. Add 2 teaspoons of Miralax powder daily, and Little Tummies or Senna at bedtime.

In other words, we had to train Nikko to poop. Not what I wanted to hear.

I really, REALLY didn't/don't want to deal with poop leakage in Nikko's underwear. He was just starting to make great progress with his potty training regarding #1s and I wondered if these attempts at #2s would cause him to regress. The doctor told me that he was looking at the bigger picture, that Nikko needed to be trained the right way so that he doesn't be the stinky kid in his class, the one having poop accidents at school when he's 8 years old. The picture in my mind of Nikko having an accident in front of NT peers made me go pale. I told the doctor that Nikko was due for a poop today or tomorrow, and should I not help him anymore? The doctor said Nikko won't burst inside. See what happens.

I needed to think about the game plan, so we went home. I have to admit that I helped him poop with a suppository just one more time the next day, to clear the pipes and then see what would happen over the weekend. Nothing major happened, just one poop smear in the underwear. Could have been worse.

On Monday after he came home from school I gave him a snack, did homework with him, let him run around to play a bit, then grabbed the kitchen timer and took him to the bathroom to sit on the toilet. I set it for 10 minutes. He sat with the iPod Touch, and within three minutes he had a bowel movement. I was amazed. It wasn't totally hard or thick; I think the Miralax helped soften it. It wasn't as huge volume as past poops have been, and it was actually smaller in girth (yeah, fun stuff to describe poop, huh?) than past poops. BUT HE DID IT ON THE TOILET. I praised him loudly and happily, and he managed to look up at me with a wry smile, no joke.

On Tuesday we sat on the toilet but there was only some slight smearing, no big bowel movement.

Today, Wednesday, we had repeat performance of Monday. YAY!

It's only been less than a week, but I'll continue this routine of taking him to potty after school. He may be ready to have a poop after holding it in all day. I always try to coax him in the mornings, too, but afternoons may be better for him. It's worth a shot. If this training works, and we're really still at the beginning, then I am going to be over the moon. Quite honestly he hasn't had an accident in his nighttime pull-up in a loooong time, but I'll keep that going for just a bit longer.