I am not good at waiting.
When my profoundly autistic son was a baby, I started having concerns about his development when he was six months old. Despite reassurances from my relatives and from our pediatrician, I felt I was waiting to see what happened next.
A year later there was a disastrous pediatrician’s appointment, and a phone number for a developmental pediatrician. Once again, we were waiting months for that appointment, and an answer to why he was spinning everything and often unhappy, but still deeply, irrevocably attached to us.
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While anticipating the developmental pediatrician’s appointment we were waiting for Virginia’s scant Early Intervention services to start. Then we were waiting for our in-home ABA help from a local BCBA.
Then we were waiting to see if any of it would make any difference.
I felt like all I did that next fifteen months before we moved was wait. Wait to see if therapy helped. Wait to see if the local school program was appropriate for him (it wasn’t). Wait to see if my husband’s company would let him move to New Jersey and go remote so we could provide our son with better therapy and education (they did). Wait to see if he would talk.
Wait, wait, wait.
I would like to tell you that I was able to put a lot of this waiting on a shelf, remain fairly present, and go on with my life.
I didn’t.
I felt like I was caught up in a chess game, and chess is not my forte. Figuring out which town to move to two hundred miles away when no district would let me see their program. Trying to anticipate the future needs of my two-year-old when it came to picking a town. Would he have true inclusion opportunities? Would they send him out of district without a fight if he needed it? Could we live fairly near relatives but still be by the beach?
If I was going to leave living near one of the most interesting cities in the world, I was at least going to score the beach for my boy.
Part of my brain was always two steps ahead.
Okay, most of my brain was always two steps ahead.
I’m better about the planning now, as we have (we hope) a pretty good idea of what Justin’s life trajectory will be as he is nearly twenty. There are the concerns about what his adult program will look like, but I have a pretty good idea of where he’ll go. I’m trying to start a residential setting with a group of like-minded friends with profoundly autistic sons, so I’ve got a potential plan for where he’ll reside down the road. I’ve figured out his camps, his medications, and what activities he likes.
Things have settled down in a way I could never have imagined nineteen years ago. I am able to enjoy the good times we have together. My mind is not often a whirl in regards to him.
If I could go back, I’d tell myself it would all calm down. That the quests for the next therapy, scheduling said therapy, finding a school, helping him to enjoy the world more, would mostly subsist. I’d tell myself that most of the time as he entered his late teenaged years we just enjoy him, and live in the moment.
I know myself well enough I wouldn’t have believed my future self.
But I could try.
I watch my nieces and nephews navigate the world, and I feel that their generation has captured much better the concept of being present. My hope for any parents whose child has been newly diagnosed is this- that sometimes you can shelve the worries, the fears, the irritations, and just enjoy your son or daughter when you can. In truth, it took years before we knew Justin’s true level of severity, and what limits it would impose, and conversely where he would soar. My advice to anyone starting out is to have a “time-out” for just reveling in your child whenever you can.
Those are the moments you will remember.
You will be grateful to have them.
Try to carve out those moments of “presence” whenever you can.
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