Saturday, April 21, 2012

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.

Thursday, April 19, 2012

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.

Sunday, April 1, 2012

Independent potty visit!


But wanted to just throw this in really quickly.... Nikko's been wearing underwear during the day, pull-ups at night, and has had maybe two total pee accidents to date. He did have one poop accident that I didn't see coming because he just had a big poop the day prior and that usually clears the pipes for two days. Every hour or whenever I gauge that Nikko's ready for a potty visit, I go and tell him that it's time to go potty. He always says no, until I repeat it often enough that he decides that "YES, pee pee potty!" is what he declares.

Today, however, I was in the living room watching TV and then I heard the toilet seat clink up... and then I heard Nikko pee in the toilet. I ran over there to help assist with the end, wipe him up, and then he put down the toilet seat, flushed the toilet, and marched to the sink to wash his hands. I was ecstatic! The amazing thing is that he did this today a total of FIVE TIMES. Each time he went to the bathroom on his own. I didn't initiate anything, but I went in to follow up. I couldn't believe it. I wonder if he just decided that he didn't want to pee in his underwear anymore. That's the hope!