Yesterday I was scrolling through my phone as I waited for water to boil (thinking how this always takes forever) and I came across an old video of you when you were perhaps ten years old. You are sitting in the conference room of your school, customized book in hand, slowly reading it to your mom, speech teacher, principal, and other teachers.
Your pride in yourself is palpable.
I admit it took my breath away to see that clip, because unbeknownst to everyone at that table seven years later tic disorder would come to call, robbing you of your limited speech, and leaving what must be to you incredibly annoying body movements in its wake.
It’s been four years, and I’m still not over it.
You see, I had thought we were past losing things, milestones and such. You never really regressed as an infant or toddler- the signs of autism in you were strong at the getgo, and instead of a relinquishing of speech there was simply an absence. You were spinning things relentlessly by six months of age, mostly unhappy with the world around you as you faced your sensory challenges. If we’d known how to look, autism was there when you entered this world, not lurking around a corner to manifest eighteen months later.
In some ways for me, having signs along the way made it easier to accept your diagnosis- there was no cliff you fell off of, just a slow accumulation of differences.
I think this made it so much harder for me and your dad when over a period of a few months you lost so much.
I will always mourn the words. What I am eternally grateful for is your affectionate nature came back in spades, which had gone on hiatus when you first showed symptoms. There isn’t a week that goes by without a mighty hug, kiss, and glorious eye contact from you. Your inner personality prevailed.
We are all so lucky.
But I won’t lie Justin- it’s hard. These unwelcome body movements may preclude your having any type of job or volunteer work, two things I’d always hoped you’d be able to do and find enjoyment with. It’s not that you need to earn your keep- it’s just that I thought you might find these things fun.
And you know your mom has always wanted you to have fun.
I’m sorry this happened to you, my boy. Fortunately, I think your days are more punctuated with joy than with sorrow, and for that I will always be grateful.
I will always do my best for you.
I love you, my son.
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