Several people have asked how we figured out that Max had autism. Or what signs he was showing that indicated something was wrong. Early on, we noticed Max wasn't a super social baby. He never seemed upset when I left him, even though I was home with him all day. He seemed to take a little bit longer to start making regular eye contact than other children. Max's hands always seemed to be busy or needed to have something to hold. Also, we learned that Max responds best to very, very consistent schedules. He had a lot of trouble with transition times and if he knew what was coming next, he handled it much better.
At the time, none of these stood out as obvious signs of autism. Looking back, I can see those signs present in him much earlier than we noticed them. When Ellie was born, Max was 15 months old. At that time, the signs were starting to become much more obvious. The thought of autism popped into my head many times, but I always chalked it up to sibling jealousy, quirky personality traits or toddler behavior. At his 18 month check up I was surprised that he passed the MN-Chat- the autism screening checklist in MN. I talked to the doctor about my concerns, but he said there wasn't really anything so worrisome to require further investigation.
In June, Max and I attended (or tried to) a week long music class. It was in the morning for 45min for 5 days in a row. There were 5 other kids in the class, all the same age. I can remember calling my mom sobbing one day after class. Max wanted nothing to do with it. He never acknowledged the other kids, it was like he didn't even realize they were there. He didn't participate at all and seemed to be totally overwhelmed by the entire situation. I had to fight to keep him in the room, he kept trying to escape. One day we had to leave early- he was so hysterical and I couldn't calm him down. Then, I knew.
Most people around us were very hesitant to agree with my opinion. Whether it was they really didn't think he was autistic or didn't want to upset us, I don't know. But when Max went in for his 2 yr. well child check, I told the nurse we wanted the MN-Chat again. I told his doctor that I knew he would fail it. And he did. There were significant changes between 18 months and 2 years. Between 15 months and two years, it was like Max started to disappear right before our eyes. We really noticed this when we were watching home videos the day Ellie died. Which was like realizing we were losing both kids...
Once I started learning about autism and reading about other kids with autism and their behaviors, I was convinced that Max had autism. This is what autism looks like for Max:
- Little or no interaction with peers.
- No pointing or getting someone's attention. No joint attention.
- He never called Dave and I "Mom" or "Dad." He doesn't refer to people by there names, to their face.
- He speaks from a script (this is more so now, than early on). Almost everything he says is from a show.
- Extreme emotional highs and lows- nothing in between.
- We wondered if he had trouble hearing because he seemed to ignore us.
- Playing with toys- he doesn't play with toys the way they should be played with. He sorts things, names things, etc. But he doesn't zoom cars on the floor, throw balls, etc. He does no pretend play.
- Oral Motor fixation. All kids are obsessed with their nuks, if they have them. But Max's is more than just the comfort. It is a need. If he doesn't have a nuk, he chews on his fingers, shirt, animals, etc.
- Obsession with order, pattern, schedule. Max cannot handle changes well. He needs things to be a certain way or he can't relax. He puts puzzle pieces in the puzzle in the exact same order every time. If you try and interfere, he screams or re-does it. Order & pattern isn't a preference for Max it's an obsession, a need.
I'm sure there are more things but these are the things that stick out in my mind. I think the main thing was that I sensed something was "off." I am so pleased that we have the ability to get Max into such a good program and find extra therapies to give him the best opportunities possible. I have no doubt that Max will make friends. That he will learn to engage others. And that he will learn to look for Evan in the closet before he shuts it.
Remembering February 9th, 2010Not the best by any means, but I love every picture of Ellie. I see something in every picture that is precious. Missing you Little Peanut...