Another April 30th, another Autism Awareness Month in the can.
I know a lot of people have an issue with this month, as some feel they are brutally aware of autism 24/7, and I get that. Some have issues with the name of it just referencing awareness, and not acceptance or even celebration of autistic individuals. A few of my friends have had issues with their kids’ private schools asking students to wear blue since it’s “all autism all the time” there, and I can see their point.
The truth is, I pick my battles, and none of this bothers me. Anything that might help a stranger look upon my child with admiration and not scorn is good by me.
This year I’ve focused my writing for this month on caregivers of autistic individuals, and I’d like to wrap up this series with a quick vignette and a shout out particularly to parents whose kids have just been diagnosed (of course if your kid has just been diagnosed you probably don’t have the time or energy to read this, but come back to it if you can).
One of the most difficult things for me about Justin’s autism was letting go of what I thought should make him happy, and embracing what did make him happy. Before he was diagnosed at seventeen months my husband and I bought him all the toys we knew our other friends’ kids had liked, and we waited eagerly to see him playing with them. He eventually did, but not in the way we thought he would. Trucks and cars were placed in careful lines. Toys were rotated and never played with in a traditional way.
Imaginative play was only a dream.
Getting his diagnosis was somewhat of a relief, as now we knew for certain what he had, and we had a game plan to get him what he needed, which eventually resulted in a move north. Our new location afforded him wonderful early intervention services, an excellent education at a school which knew how to care for him, and proximity to family and venues Justin would eventually like.
Notice I used the word “eventually.”
When Justin was younger all he wanted to do was stay in our house and spin things. I pushed him to go on outings- first, it was just walks in his stroller that he eventually began to love. After we moved to the Jersey shore and had access to boardwalks and Great Adventure and beaches (oh my!) I began my quest to acclimate him to these places, to help him with his sensory overload and crowds and waiting on line (still working on that one but it has improved greatly) so that he could have a life outside of our home.
I won’t lie to you- these outings were work, the way that Disney is a working vacation. Some days we only made it to one ride at the boardwalk, or half an hour at the beach. I have little half moon scars all over my body from his protests that it was time to go home- I did not always escape our outings unscathed. After some time and many trials Justin did learn to love most of these places, and I learned to read his needs and create routines to tailor each experience to him so that our little excursions made him happy.
And the key to all this acceptance truly was seeing our trips from his perspective.
Justin will be fifteen in a few weeks. I have it on good authority from my friends with teenagers that their boys are really into girls right now (okay, he may have that in common with his neurotypical peers), that they’re starting to think about colleges, and all are yearning to drive and slough off the shackle of their parents. On the other hand, my fifteen-year-old still loves Baby Einstein DVDs, adores roaming throughout New Jersey on the Midas Rent-a-car site, and thinks YouTube is swell.
Again, he may have the latter in common with his NT peers too.
The truth is over the years I’ve learned to meet him where he is, not where I think he should be. This doesn’t mean that I’ve given up on him, or I don’t wish he would have all those pretty options in his life. I will wish he had those choices until my dying breath (which I’m shooting for to happen at about 120, we’ll see how that goes.)
It’s just that in order to have a connection with my son, and we have a profound one, I needed to pay attention to what brought and brings him joy, and capitalize on that moment.
I had one of those moments yesterday.
Back in the day when I had only one child my mom’s 60th birthday was coming up, so I thought I’d make her a DVD of photos and video clips of her only grandchild. The disc encompassed Justin’s first two-and-a-half years of life, and it was set to songs Justin loved as a child, tunes that held special meaning to us. It’s still a fan fave, and as he has access to it a few months a year I heard him playing it yesterday, his eee’s chiming in with notes from “Somewhere Over the Rainbow” as he gleefully rocked back and forth. I put down my dishwashing (gladly!) and walked over to where he was standing, taking in his ebullient grin.
He stopped rocking, smiled even broader if that was possible, and took both of my hands to dance.
I can share with you that this occurrence does not happen often. In fact, if I hadn’t put down those dreaded dishes I would have missed the moment, as playing the same twenty second clip is much more reinforcing to him in the long run than dancing.
And I am, after all, his mama, not a pretty teenaged girl.
If your child was just diagnosed, I know your world is spinning, and there must be so much you feel you can’t control. If you can, just try to find a moment, maybe it’s only one a day, where you connect on their level with something that brings them joy. If you do that enough you will weave a tapestry of threads that connect you to one another, a relationship you can build upon which will help both of you greatly in the years to come.
We have a profound connection he and I, one I know will last a lifetime because we’ve built on these moments, stretched and elongated them to encompass our love for one another.
Yesterday we had our moment because I met him where he is.
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