This is the year it all begins.
My eldest son Justin, who is severely autistic and non-verbal, is turning seventeen in a few months. This is the year that the inevitable slide to adulthood really ramps up.
The year Jeff and I spend thousands to be his guardian when he turns eighteen.
The year we apply for Medicaid and SSI, which will be welcome benefits.
The year my boy is technically in his last twelve months of childhood.
I admit that sometimes I find milestone years to be hard. If his school went by traditional years he would be a junior in high school, and if he were typical he’d be gearing up to drive, preparing for the SATs, looking at colleges on road trips. I’ve watched my friends go through this right of passage for years, and know that instead we will be spending our time and money petitioning a court to grant us legal rights so when he hits adulthood we can continue to make medical decisions about him.
Sometimes I am okay with this. Sometimes I am really, really sad.
It’s funny, but the realization of the vast differences between his life and that of many of my friends’ kids doesn’t hit me when you think it might. I am generally fine on his actual birthday or at his family party, mostly just grateful we have family to celebrate with him, and thankful he usually enjoys opening his presents and scarfing down a chocolate cupcake.
No, the differences hit me when I see a “driving school car” tooling around the neighborhood with a cautious teen at the wheel. It hits me when I see bumper stickers of colleges on the back of cars at a stoplight. I notice it when I pass the Huntington prep school advertising SAT prep on my way to grab a hot chocolate at Barnes and Noble.
I still have my priorities.
And the thing is, having these thoughts is okay.
There are some who might say they are not okay, that I’m not accepting of my son as he is, not reveling in his personal accomplishments no matter how much they diverge from the mainstream. This couldn’t be farther from the truth. When he recently relearned how to take his shirt off before a shower, I literally did a dance (no, it will not be on YouTube). When he started using a fork about seventy-five per cent of the time I rejoiced, because it was a skill he once had before the tic disorder came calling, and it’s a skill he should have for his lifetime. I am as proud of his accomplishments, no matter how small they might seem to the world, as I am of his little brother’s more typically achieved milestones.
The truth is I also believe Justin is unaware that he will not drive or attend college. He is passionate about watching his DVDs on his player, committed to driving around Monmouth County on the computer using the Hertz Rent-a-Car site, and absolutely devoted to Philadelphia Pretzels. I am confident he thinks his life is good, that he loves his school, loves to go out to most places, and also craves being home.
This knowledge helps my heart immeasurably.
But I know there will always be a wistful component as to what might have been, and a passionate longing for my son to have been gifted with the ability for independence, to be able to take care of his needs when I’m dead. I know I will never let that one go as long as he takes breath.
And I’m okay with that permanent longing too.
In a few months I will gear up to take official lifetime responsibility for him, which is of course a mere formality. I will hopefully continue to watch him reacquire skills, and find joy in his routines. His father and I will continue to try to provide a happy and safe life for him, which in the end is all we want for him with all our hearts.
And no matter what we feel we will move forward, because that’s what we do.
I hope all of you can too.
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