Monday, October 6, 2014

A Peek in the Life of an Autistic Child

Poor Destructo. He's one of those boys that fits a lot of common autism allergies, gut problems, big noggin. It's such a balancing act, because he's medically complex. Sometimes it's so hard to know if he's sick or just having allergies. If he's having a sensory aversion to a meal or he has a sore throat. If his skin is breaking out because it's an allergic reaction or something else. It's very difficult when he's still limited verbally.

He's had a rough few weeks. Sleep interruptions, runny nose with post nasal drip, behavior regression, and within just the past few days it seems like he is broken out all over with different types of rashes. He is no where near the child he was in preschool. He is combative and has no coping skills. After I'm able to meet with his school nurse and the school psychologist, his IEP meeting is getting moved up. I considered calling an emergency one, and when I said I wanted to, they said they would be happy to move the meeting up from December to whenever I say.

So let's start with his behavior. Destructo has enough language to understand no. We tell him no, he screams and drops to the floor. He is also hitting and pushing when not getting his way. This was NOT a problem during summer session when he was in preschool, but it was in January when he came back from a two week break. After two weeks, he was fine. But the last week of summer session of preschool, I could tell he wasn't getting the sensory diet or his normal therapies. He became unhinged by Wednesday the last week of pre-k.

Kindergarten, however, is a different story. It's now October, and he hasn't adjusted to his new routine (aside from getting on the bus, that he understands). What is different? As far as I can tell, he is not getting a sensory diet. What is a sensory diet? I'll just point you here as I'm a bit limited on time since the Jellybean is napping. Destructo is a very sensory boy, and when you have SPD (Sensory Processing Disorder), being unregulated can cause meltdowns. To put it shortly, certain types of physical input can calm down his internal mental noise so that he can function better. So that is point one for the IEP meeting, adding a BIP (Behavior Intervention Plan) in the form of a sensory diet.

So let's say for the past two months, Destructo has not been getting this sensory diet. Now, I was an anxious child myself, so I can only imagine what he is going through. That anxiety can cause him to not only melt down, but it is also a proven medical fact that mental stress can cause stress on the body, including the immune system. Is it a big jump to think his skin is breaking out because he is stressed? I know people who get hives when they are under duress. Or if not directly causing Destructo to break out, it's just putting enough pressure on his immune system so that the slightest allergen will, as I like to put it, "make his skin explode." Point two of IEP meeting--address allergens in his classroom. I have already sent in his own soap. I might have to put gloves and a long sleeve smock on him for arts and crafts activities.

Sleep interruptions. Monday and Friday last week, Destructo woke up at 3AM. Woke up Jellybean too. Couldn't get either back to sleep. He had a runny nose both days, and if his allergies are anything like mine (and they are, this mommy has allergies and Destructo Daddy does not), he had an itchy throat from the post nasal drip. I still sent him to school both days, because keeping him home would just further disrupt his sleep routine. He gets nap time at school. One of those nights, he woke up extremely hyper; maybe it wasn't his nose but the fact he was extremely over stimulated, which is not a problem when he gets his sensory diet.

Skin irritation. It got really bad this past weekend but started in on Thursday. It started with his diaper area and snowballed from there. I managed to identify two and a half causes and eliminate them. Forehead rash: from his new Captain America hoodie. Arm rash: Mommy's moisturizer! Normally, I use the same stuff he does, because we both have horribly sensitive skin. But none of the usual things were working for some patches of eczema I'd been fighting for weeks on my forearms. So I tried a Bath and Body Works moisturizer. And it helped! Took me three days to figure out it was me. So, I'm not using that stuff anymore. The half cause...something under his nails. So my train of thought...maybe something in art class, a "non-toxic" finger paint or something made with some sort of food derivative got under his nails. Sensory Destructo often scratches at where the elastic is on his pull ups. Transfers allergen and it just explodes from there. I am basing this on my observation that the puffy hives were following nail scratches. As of the time I type this, probably 75% of his body is covered in some sort of rash. But he has no off to school he went. We're going to the doctor later today, and I had already spoken to her last week about getting some blood work done to update his medical records with. Because prick testing is not going to work with Destructo.

Another thing that ties into the sensory diet is is ability to process and tolerate other sensory input. Destructo has severe food and sensory aversions. During the summer he was able to tolerate sitting at the table for a family dinner, but the past few weeks he began refusing one of his few substantial foods. Because of this perfect storm of food allergies and sensory aversions, he is also on enteral formula medical food to provide him with healthy calories (I could write a whole blog entry about fighting for insurance coverage for that!). And two weeks ago he actually tried a new food in school...but unfortunately, he had an FPIES reaction to it a few hours later, which is when his aversions kicked into a higher gear. Now, he is eating dinner by himself again. This makes me very sad but it's better than him not eating. He went four days living on potato chips and formula before I got him to eat his chicken nuggets again. Though I can't help but wonder if it's because he noticed that Tyson makes their Fun Nugget dinosaurs smaller now.

We are also on high alert for seizure activity. I may or may not have witness a sleep seizure and he was difficult to rouse the next morning. There also have been two episodes of possible gelastic seizures. These are seizures where laughter and or crying usually lasts less than one minute, and is then followed by signs that are more usually recognized with focal seizures. These signs can include eye and head moving to one or the other side, automatisms (such as lip-smacking, mumbling or fidgeting of the hands) and altered awareness. This may last for seconds to many minutes and then stops [source]. Autistic children are 33% more likely to develop epilepsy than normal children, and guess what? It is hard to diagnose because the symptoms can be mistaken for autistic stims and habits [source].

Now all of the above...this is just the stuff Mommy is observing and taking care of. Destructo's school day is pretty busy too! Speech therapy...five times a week. Occupational and Physical therapy....three times a week each, plus Adaptive PE at 10:1+1. His classroom is a 12:1:3+1 BOCES satellite classroom with 14 students in it. Third point of IEP meeting...getting Destructo a 1:1. They told me back in February at his last IEP meeting they were expecting his classroom to have about 10 children and that there would be about one adult for every child, and that we could revisit the possibility of him having a 1:1 in December. Well, I'm not waiting that long. I attacked his IEP with a highlighter a few days ago. I am going in prepared and with my own personal army!

So there you have it. It is any wonder I'm a walking medical record for Destructo?

~High Functioning Mommy