Colin is almost eight years old now. He’s in first grade – he repeated kindergarten last year. This kid is super skinny and made of solid muscle because he never stops moving. I mean never.
When I first met Rick and his boys, they had an alarm system on the house – not to keep intruders out as much as to keep Colin in. When he was just 3 years old, he once busted himself and his brother out of their rooms (they had the kiddie doorknob covers – no match for Colin, who popped them right off) and they went through the garage, into the car, pushed the garage door opener button…and went for a stroll. All this happened after Rick had put them to bed and while he was trying to take a quick shower. When he got out of the shower, there was a police officer in his living room with his wayward kiddos.
At that point, Rick put locks on their doors. He’s not proud of it, but he didn’t know what else to do. He worked nights and had a sitter that came and slept over with them, but she wasn’t terribly helpful as far as getting them ready in the AM or anything, and she was a heavy sleeper, too. One morning, Colin woke up early and had messed his pull up… so he decided to redecorate his room with the poo. It was everywhere – from the carpet all the way up to the light on the ceiling, splattered on the walls… everywhere.
Colin has been on Metadate CD for about 3 years now. He currently takes 80mg in the morning. About a year ago, our doc added 20mg of Methylphenidate (same thing) in the afternoons to help him ride out the rest of the day. (He was crashing around 2-3pm every day and just bouncing off the walls.)
I’m jumping around…let me go back…
When I met Rick, Ryan and Colin, Rick was working nights and trying to care for the boys (it was summer) during the day while hardly sleeping at all. They got into some mischief, but nothing life threatening. On our first date, I was pretty amazed at how patient Rick was with Colin – answering every single insipid question! Anyone who says there are no “stupid questions” has not been around our oldest for very long! I’m sure that sounds awful, but you have to understand that Colin doesn’t know how to have a “conversation” in the traditional sense. So what he does is ask questions that he – typically – already know the answer. “Are there lights on the ceiling?” “Is that a swingset?” “That picture is on the wall, right?” Or he tells you how much he loves things. “I love your new blender.” “I love your big brains.” “Do you love my Bop It? I love my Bop It. I love a new Bop It. Can I have a new Bop It?”
Colin was diagnosed as ADHD around age 4. The doctors did not feel he was autistic. The school said it was too soon to test for autism.
I suggested that we get him tested on our own when he was 6 years old. We went to see a specialist and he told us that – at this age – it could take several sessions before a diagnosis of ASD could be made.
It took 30 minutes.
Watching this doctor give Colin these tests was incredible. We became very aware of the fact that Colin has no sense of empathy. He believes that everyone does (and probably should) feel, think, know everything he does. He also can’t read facial expressions. Of all the questions he was asked about emotions, the only one he understood was the one he called “disgusting” – a picture of a girl that had smelled a skunk.
The doctor told us that the things he says are learned catch phrases, for the most part. He knows his parents and teachers smile when he says “I love you!” so he does it all the time – even with strangers. He hears people tell others that they missed them while they were gone, so he usually greets people with, “I missed you so much!” even if he didn’t know you were gone or has never met you before in his life.
Unfortunately, the school still wants to wait until next year. I don’t understand the reasoning behind it, but at least we know better what is going on so that we can try to do more on our own.
The same doctor that diagnosed him also prescribed him Abilify. We started with 2mg in the AM. After a few weeks, we noticed mild changes, but nothing much, so he decided to give him 5mg/day. What a change that made! He stopped having these horrific meltdowns (he used to just lose his mind if something didn’t go his way – would bite or hit or scratch himself, bawl his eyes out, say hurtful things to us, etc). He seemed so much happier. WE were happier, too, as a result.
Unfortunately, he seems to have built up a tolerance…and after about a year, it stopped working for him. He started having meltdowns and lashing out again. We spoke to his doctor and he suggested giving him another dose of Abilify in the afternoons. This just made things worse – we didn’t keep it up for more than a few days. It’s awful to see him like that. And it brings stress to the entire house as well.
At that point, the doctor decided to take him off Abilify and try out Resperidone. The first week was okay – he was hungry as all, which was great because he is so skinny. It made him tired, too, which we hoped would work to our advantage! But after a week or so, we noticed it was causing him to be more nervous, more paranoid… he wasn’t sleeping, either. He wasn’t having meltdowns, but he was sucking his thumb again and biting on his fingers. He hadn’t sucked his thumb in months, and now we couldn’t keep it out of his mouth. He’d stay up until 10 or 11pm – constantly getting up with some excuse or another, turning his light on and trying to leave it on. And then he’d wake up at 5am. The less he slept, the more anxious he’d get. We called the doc again and said this isn’t working…he told us to take him off the Resperidone and gave us the number of a recommended Pediatric Psychiatrist. We’re going to get into them ASAP – thankfully they take our insurance.
Doc also said the high dose of Metadate in the AM may be causing some of his issues. He suggested we try taking him down to one pill in the am – 20 mg.
We took him off the Resperidone on Sunday. The first two nights, he still had some issues… but last night was wonderful. He went to bed at 8:30pm and slept until 6am! He’s having issues with defiance and speaking out – all the things that were going on pre-Abilify – but we will wait it out and see what the psychiatrist has to say. More than anything, I just want him to be happy and not hurt himself or his brothers.
This morning I just gave him the one Metadate 20mg pill…and sent a warning email to his teachers! (He spends half his day in the mainstream classroom and the other half in special education, where they essentially reinforce the core subjects taught by the primary teacher and cover the non-core subjects as well.) I told them he’s a little on the hyper side and speaking out, etc, but at least he’s in a good mood from all the sleep he got!