Despite living this autism life long enough now to qualify for tenure, I am forever being reminded that the Kiddo is the boss/teacher. I am his mere unpaid intern. I learn on the job. If being his mom gave college credit, I suspect I would only be halfway towards a degree. There is still so much to learn.
There are some things though that I know to be true.
I know now there will be times I cry. Hard, ugly, snot bubble tears. Out of frustration. Out of joy. Out of being completely overwhelmed by even the silliest event. (My family still doesn't quite understand why me dropping a meatloaf caused me to collapse in a puddle on the floor but that day. That damn stinking day, it did.) Sometimes all in the same hour. Autism is action packed like that. Then he'll go do something awesome like running up and hugging me and then running off again. That will never not make me teary.
I know that the communication issue isn't just on him. It's on me too. This isn't just about him finding a way to explain what he wants and needs. This is about how I listen and understand his language. I know there is a difference between McDonald's, different McDonald's and the other McDonald's. What, you don't? Location, location, location. I know that cheese quesadillas are pizza in his world because they are cut into triangles and calculators are phones because they have number buttons on them. I thought I knew language. He's showing me a whole new way to understand it.
I know that when a day off of school rolls around that I better have a plan for the day or he will make one for me. One that might include recreating a previous class trip or outing that took place four years ago. I get the fun task of not being let in on that fact and having to guess a lot. He is better at dropping hints though and I've gotten smarter by approaching him with "OK, here's what we're doing today." before I am told we need to eat at the Applebee's in Norfolk, Virginia for lunch today. Did I mention we live in New Jersey? ;-)
I know to let go of traditional milestones and benchmarks. He sets his own and they are way better.
I know he can have like ridiculously great eye contact and will look so engaged that for a moment I will forget autism lives here.
I know he'll never be the kid that leads the social interaction. He's always going to be the follower, not the leader. That scares me. A lot. I also know though that since his attention span is short, he won't follow for long. So "Yay!" for impulsive behavior. Who knew there would be benefits to it?
I know it will never not hurt to see a typical kid try to interact with him on the playground and eventually get bored and stop. Or just be confused and run away.
I know I shake off that above mentioned hurt much faster now. Doesn't mean I forget about it though.
I know I will be rendered speechless when I do see a typical kid just go out of their way to be nice to him. It gives me hope even though I wonder will this change once the teen years hit.
I know that since I started writing about autism and our lives I am now forced to really accept the reality of our situation. That's been both good and bad.
I know that kiddo of mine will continue to surprise me.
I know the joy of meeting other autism families that I have gotten to know online. I hope to do more of that. Fry Convention anyone?
I know there will be those who give looks, whisper under the breath and troll online communities while hiding behind their computers. Screw 'em. I have better things to do.
I know that I need to wrap this post up. I know you're just as tired/busy as I am most days. ;-)
You have your McDonald's, we have Regular Target, Target #2 and Target #3, LOL. I try to save my snot bubble teared crying for the shower, it's easier to clean up that way. Love this post.
ReplyDeleteNice post - I wonder though about the socializing. Let me clarify - our daughter is also on the spectrum and as a teen she finally has a few friends also on the spectrum. But when she was younger I obsessed about her not having friends - she kept telling me she was happy without them. Finally I accepted the fact that she didn't need to have friends the way I did at her age and that friendship for her looks a lot different than it does for other teens. Sometimes we just have to set our ideas aside and let them be themseves.
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