Not Living in the Past – Living for the Future

Ali Family Autism Truths #13 – April 13, 2016

When you’re picking up your kid from school and it’s taking a very long time for the teachers to bring him out.

You think the worst. Because, experience.

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I posted that on Facebook while I sat in the car today nervously watching the minutes tick away, waiting for D to come out. It was taking a long time for his teachers to walk him to the car, and that was making me late to head over to A’s school next and get her.

I was sure he was going to come out upset or crying, or that was the report I was going to receive.

Earlier that day in the morning, the phone rang and I saw on the caller ID that it was D’s school.

That can’t be good.

It was the school nurse (who is a friend of mine), calling on behalf of the teacher to let me know that D was having a difficult time and engaging in self-injurious behavior, the details of which are private unto him and myself.  We talked things through and I advised her on some things they should do for him. Somethings they had already correctly and rightly put in place.

She offered to call me back if things didn’t improve so I could come and pick him up.

I replied, At the risk of sounding like an overprotective, helicopter mom – could you call me back regardless? If he’s feeling better or worse, either way I want to know.

She assured me she would. And thank God the call came about an hour later that D was doing much better.

I haven’t gotten a phone call like that in several months. Four years ago I received phone calls telling me worse things on a daily basis. The ring of the phone caused my anxiety level to rise, because I knew what it would mean. It was like D was trapped in the pain of his own body and brain, and he physically fought tooth and nail against himself.

No, it wasn’t like that. It was that.

And so, I get a call like the one today and even though it’s most likely an aberration, the panic starts to build and anxiety starts to rise. Dear God, we can’t go back to that. D can’t go back to that. He cannot live like that again. He cannot suffer like that again. Show him the way. Show me the way to help him. Give him his calm, his health, his peace.

I’ve been reading more and more these days the writing and social media updates from autistic adults, trying to understand more what it means to live with autism as an adult, trying to understand what helps them, what hinders them. Trying to figure out what D will need, what kind of life will be good for him – what does he want? What does he feel will work for him or not work for him?

Right now, or rather for the past however many years, we are holding things together with fragile strings and scotch tape, hoping that the strings won’t break or a puff of wind won’t blow down D’s house of cards. How is one supposed to envision the future when the day-to-day is hard enough?

And yet, how can D and I not be thinking of the future?

Later in the afternoon today, while D was chilling and getting to know his new therapist/caregiver, I read an update on Facebook from a favorite author of mine, Susan Senator, who is doing groundbreaking work in helping map out good futures for adults with autism. She wrote about how her 25-year-old autistic son Nat was going on a vacation with his buddy/roommate/care giver for the first time ever.

I posted one comment: Wow.

She posted back to me: I would never ever have believed this would be possible, on so many levels, even 9 years ago when he was 17. So take heart … Never say never with our guys!

So that is the truth I’m going to bed with tonight. It doesn’t have to be a repeat of the difficulties and horrors of the past. It can be a bright future. Or, as I’ve written before – D’s story is not done. It is still being written.

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