Photo courtesy of Eileen Shaklee
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. Sometimes all in the same hour. Autism is action packed like that. 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. I can’t drive out of New Jersey. They make you pump gas in other states!
- I know to let go of traditional milestones and benchmarks. He sets his own and they are way better. Maybe he will never ever get the hang of learning to tie his shoes but the day I found him playing the piano with the sheet music turned upside down perfectly, that moment sticks out.
- I know he can have ridiculously great eye contact and will look so engaged that for a moment I will forget autism lives here. Those moments are bittersweet.
- 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 walk away. I now know how to shake off that hurt much faster now. It doesn’t serve much purpose to dwell on it but it doesn't mean I forget about it.
- 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 as this generation of kids grow older. I’m hoping for the best but know to prepare for all outcomes. Folks are quick to forgive and understand little and cute. Autistic kids grow up. I hope they remember that.
- 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 do know that kiddo of mine will continue to surprise me and it brings me both joy and pain to share it.
- I know the joy of meeting other autism families that I have gotten to know online. I hope to do more of that. 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. They are already on to the next thing they want to be righteous and judgmental about anyhow.
I always knew I would love my son. I just didn’t know how much until I met my Kiddo.
Eileen Shaklee, aka Mama Fry, lives in Wall Township and blogs at autismwithasideoffries.blogspot.com.
Read more of Eileen’s posts here:
Going Out to Eat with Your Autistic Kid? You'll Want to Read This First
10 Things to Do When Inviting an Autism Family to Your Home
6 Tips for a Successful IEP
7 Life-Changing Tips for Traveling with Your Autistic Kid
6 Things Nobody Tells You About Parenting an Autistic Kid