Wednesday, February 9, 2011

Max's autism signs

Parent-Teacher Conferences. Something I didn't think we would have to deal with for a few more years. But tonight Max had (well we had...) his first conferences. Max's grandparents, great-grandparents, aunt and uncle also came to learn a little more about how to engage Max. I also wanted them to gain a little insight on why we have to do things a certain way and how Max's thought process is different than other kids his age.
We are so lucky to be in a school district that not only has a strong Early Childhood Special Education Program but that has teachers and therapists that really care about their students. Max loves going to school and I know it's because he is comfortable and trusts the adults around him. I have no doubts that they are a perfect fit for Max. We will also be getting some outside OT & Speech just to maximize the progress Max is making.
Max's teacher and Speech Therapist were very encouraging and described Max as "funny, smart, quick to pick up on things." Exactly what we wanted to hear. They gave us some tips on how to make our life a little easier and how to engage Max more. We will be implementing some more visual schedules and cues around the house and other places to make transitions easier for Max to understand and to get Max more interested in participating in activities with other people.
Another thing we need to start working on is building a stronger relationship between Max and his cousin Evan. Evan is 4 1/2 years old and from the very beginning has been very protective of Max. He loves to play with Max but he is starting to notice that Max doesn't play like other kids do. He gets frustrated when Max does play with him the way he expects him to or respond to his attempts to get his attention. Max noticed the closet door was open the other day at my grandparent's and went to shut it. He didn't notice Evan was in there (or didn't care) and shut the door and walked away. Evan's feelings were very hurt as he thought Max was being mean. So I will be making a book for Evan to teach him about how to play with Max and we will have some very directed play dates between the boys. I think Max's relationship with his cousin is very important and I don't want Evan to get frustrated and quit trying to play with Max.

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, 2010
Not 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...


Anonymous said...

I just got home from a morning of doing music therapy with children with autism. All these children are absolutely unique, strong, creative, resourceful people - sometimes it's even easy to forget they have challenges (sometimes it's not!). I find real joy in getting to know them through music. Your Max is just darling.

Anonymous said...

Max is a very lucky boy to have such a proactive mommy. keep up the good work, and try to keep you chin up.

Our Journey said...

Thank you for sharing this. I am a teacher. (Stay at home mom currently) Over the past 13 years I have had several Autistic children in my because of inclusion. I do have to tell you that they all have been unbelievably smart!
Last school year in my second grade class I had a student who was in in my regular education class full time. He had so many problems making friends in first grade because of it was hard to socialize with his autism. When he came to second grade he soared! Of coarse he made straight A's but beyond that he made friends! I never tolerated my students not getting along or being friends, so we would work on this everyday with morning meetings and talking and acting our various scenerios.
Anyway, when we went to do his IEP for third grade he had mastered many of his goals and everyone was impressed with how far he much so that he no longer sees his OT as much and many services were scaled back to once a month!
I say that to say that because of your proactiveness, Max WILL succeed. I have no doubt that he will be super smart academically, but he will soar socially with the right therapy, good teachers and empathetic peers.
BTW, I put your button on my blog. It is beautiful.

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