Susan's Blog

Thursday, March 21, 2019

When the Fork in the Road is Actually a Knife

When Nat was 10, he was offered a choice in classrooms, where Nat’s alleged functioning level and behavior were the deciding factors. If we chose Door A, Nat would be consigned to a “pragmatics” classroom. Separate, low expectations, ADLs, making change. If we chose Door B, the Director told us, “imagine the opportunities that would open to him.” Academics. Inclusion. Friends. “But,” he said gravely, “he must keep those behaviors under control.”

Oh how that classroom sparkled and seduced me, like the Sirens to Odysseus. So I chose it with great hope and trepidation. But the whole thing was more like Scylla and Charybdis, a rock for Nat to crash upon, a terrible whirlpool that sucked Nat under. And they blamed Nat.

Listen up, folks. It is up to the adults in the room to open those doors. It is up to the grown-ups to buoy the boy. The professionals, the educators must bear the responsibility of teaching, of shepherding him into adulthood.

I hold this advanced society responsible for failing Nat. You, Modern Era, proud Accepter of The Tired and Poor, where is Nat’s Statue of Liberty? You are letting guys like him drown. You offer the classrooms, you offer the funds, and we are grateful, oh so grateful. It’s a lot of money. Oh, how we know that. We are never allowed to forget how much of a strain our kids are on the school system. How much of a burden.  But, we tell each other, It’s better than it used to be because in the Olden Days there were Institutions.

And Nat is one of the lucky ones because he has adulthood residential funding. This means he’ll always have some sort of roof over his head with some sort of caregiver. So that I can die one day and not have to leave him on the street or with some saintly relative. The majority of people with autism and developmental delays are on waiting lists, the bread lines of today. They’re home with aging parents. With siblings who deserve their own life. Guys like Nat spent 18+ years in school and at least learned something, at least climbed towards their individualized goals. And then literally on their 22nd birthday, both Doors A and B are closed to them.

The choices for guys like Nat — with severe autism, intellectual disability, communication disorder, who are lucky enough to have residential funding — are limited to group homes of 5, which can also be Institutions with indifferent staff — or worse. Or you try some sort of Shared Living. You move in with a family or a roommate caregiver and hope for the best. You, most vulnerable of all people, are often not allowed to have cameras for protection. If you get abused, you are not believed — you are an “unreliable reporter.” Your abuser can be rehired at the service provider down the street.

The truly lucky (read: wealthy) ones find their ways into well-run communities, farmsteads, apartments. Private sector. And then their parents live forever.

So here we are. Nat is no longer in his (second) Shared Living arrangement. Another setting that beckoned beautifully but could not support him as he is. So what do we look towards now? Another group home? The low-risk but low-growth option. Door A, of course, in its dead-eyed glory.

I am out of ideas. Where will Nat thrive and be happy? Where will he find growth and opportunity like Door B, but have the safety of Door A? Nat has tried ’em all. Isn’t he lucky?

Actually, yes, he is. He lives on, brave and ready for the next phase. He laughs to himself, he talks joyfully to himself. He goes readily to new things, thank God. Because you know what? In the end it is not what’s behind the door that is full of promise. It is Nat.

7 comments

This is the unadulterated truth. The stuff that keeps me up at night.

— added by Susan Harrison on Thursday, March 21, 2019 at 3:09 pm

There is an amazing solution in Wisconsin (where the waiting list is very short and becoming a resident of Wisconsin is quick as well.) It’s called St. Coletta of Wisconsin. My 29 year old daughter has lived there 3 and a half years. It is a dream come true for her and our family. Residents live in small group homes in the community. There is a great day program and so many activities. My husband and I live in Virginia and we travel often to see her and she comes home as well (though they trained her for a job that she loves so doesn’t come home as often now). It is worth her not living close to know she is so loved and protected. Feel free to contact me for more info!

— added by Christina J. Goldstone on Thursday, March 21, 2019 at 3:22 pm

This is one of Susan Senator’s best posts. The truth rings loud in this post.

— added by Irene Tanzman on Thursday, March 21, 2019 at 6:00 pm

As they say, “Word” because every single one of them is true true true. Great piece Susan.

— added by David Royko on Friday, March 22, 2019 at 8:42 am

Raw and real!
I had an Uncle with Down Syndrome who was the sweetest man ever! Loved him so much! He never went to school or attended any formal educational settings. Granny kept him at home. Close to her. In a very small town. Unincorporated.
For years I thought what a shame because he could have had a great life in the community, in a larger city so he could be a part of everything. See the world! . But you know what? He did have a great life, I was just too immature to see how wonderful his life really was. To him the world was a beautiful place full of kind people who loved and cared for him. And no, I’m not speaking for him, his feelings were evident from the happiness that he showed. You see, he didn’t miss what he never had because he didn’t know any different. If Granny were alive today, I would owe her an apology in a sense, maybe she was right about a lot of things and some of “my” modern era, ways of thinking are not what was best for him. After all, he was “her” son and he was happy! She was a wise and loving woman.
And no, to anyone out there who wants to blast me for my words, I’m not talking about ANYONE else with a disability, I’m speaking about MY family. My grandmother and her son. Their situation is not the same as anyone else’s, it just makes me think, I shouldn’t have judged her for her decisions on how best to care for him.

Thank you, Susan. When I read your words I just hurt for you. I do. It is clear you are doing the best you can, I wish you and Nat much happiness.

— added by Win on Friday, March 22, 2019 at 3:50 pm

Winny: Thank you. 🙂

— added by Susan Senator on Friday, March 22, 2019 at 3:52 pm

That means a lot coming from you!! Thanks!!

— added by Susan Senator on Friday, March 22, 2019 at 3:52 pm

%d bloggers like this: