The other night, my son saw the movie “Up.”
This does not sound like a remarkable sentence, particularly since it’s been out almost seventeen years; plus, it being his favorite, he owns the DVD and a backup DVD as well.
However, those eight words are remarkable.
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They are triumphant, because last night my son saw them in a room with other profoundly autistic adults, the same exact room we had to leave two years ago because his often loud vocal stimming was disturbing the other attendees, and I felt we had to leave.
That night, the clientele was other autistic adults on the more moderate edge of the spectrum, a few adults with mostly physical disabilities, and a few with Down’s Syndrome.
As soon as the film began, you could have heard a pin drop.
Except for the fact that within minutes, my son was enthusiastically sharing his joy, quite loudly, with the rest of the group.
No one asked me to leave. They solicitously asked if they could help, and not in a “please for the love of God leave” type of way. But after ten minutes when I couldn’t get him to stim more quietly, we left.
And I knew I had a choice.
Be depressed that the event I had asked the director to create, the one I’d been working on for almost a year, couldn’t work for my son.
Or go back to the drawing board with her, and ask her to tailor the situation to make it work for him, and other profoundly autistic adults just like him.
Because the truth is, even within the world of disability at large, profoundly autistic children and adults are their own tribe. Nothing can be one size fits all for them, in any aspect of their lives.
And last night, Justin’s needs were heard.
There were two movie rooms simultaneously showing the same film. One room with quieter clients, and one where enthusiasm could roam free.
We chose the latter. And my son gleefully sat through the entire movie, looking at me periodically as if to say “I can’t believe it’s Up,” and had an entirely successful evening because an individual in a position to address those needs, did.
That vision to accommodate my son’s and my friend’s autistic sons’ true desires, is at the heart of what HomeLife21 is trying to create for our children.
To gift them autonomy in their decisions, not just present them with a daily cookie-cutter routine that every resident has to follow.
To ascertain their preferences; and give them access to what they actually enjoy, not what we think they should enjoy, and grow with their decisions.
To individualize their time so they can truly live their best adult lives, with the dignity of their own choices, to their full potential as human beings.
This is the soul of what we are trying to do, with your help.
And we won’t rest until we do.
For more on my family visit my blog at autismmommytherapist.wordpress.com
Follow me on Facebook at Autism Mommy-Therapist
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