December 16, 2013

The Gap (not the fun store)

Posted in My Take on Autism tagged , , , , , , , , at 10:38 am by autismmommytherapist

Recently I had the luxury of attending Autism New Jersey’s annual conference, a day which is comprised of a myriad of autism-related workshops which are really worth attending if you can make it. I always take some new ideas (and candy from the booths) away from me, and have made a concerted effort to get there every year. This conference was particularly informative as I learned a great deal about the transition years and services for adults with autism which I’ve written about in a previous post, as well as heard some really heartening things about residential options.

Some of the information was redundant (I now know more than I ever need to know about special need trusts), but the most exciting part for me in the residential workshop was a talk given by Tom Toronto, who works for the Bergen United Way. In the midst of learning about guardianship and registering for the DDD I was treated to the layout of a beautiful home constructed with autistic adults in mind.

Said building will house eight residents, and comes with a “sensory room” for anyone who needs it. The layout and design were stunning, and Mr. Toronto’s enthusiasm for his job evident. I took a deep breath and let all the information wash over me, because this is a topic dear to my heart.

Someday, Justin will no longer be able to live with us. The fact is, although I’m shooting for a hundred and fifteen so I can outlive him, I’m fairly certain I’ll fall a bit short of that mark.

I had my sweet boy when I was in my late thirties, and by the time he graduates high school both of his parents will be pushing sixty. I don’t want his little brother (who might have his own challenges) to be his primary caretaker, and frankly I’m not even certain he’d accept the job. So at some point we need to look at residential options for Justin, and I have to say I was heartened by this one shining example.

Trust me, I have friends with much older kids on the spectrum, and many of the options at the present time are not so pretty.

We have a long road ahead of us. As his parents we are not allowed to place ourselves on the list for residential funds or in-home respite care from the Division of Developmental Disabilities (DDD) until I turn fifty-five (I’m the baby in this couple by two months, I’m taking it), and the wait for services is approximately fifteen years, which puts Justin at age thirty-four, and his parents at seventy.

He graduates when we turn fifty-seven, so I’m keeping my fingers crossed we’ll have some sort of daytime job for him at that time, since I’m not really certain how I’ll fill those thirteen years before the DDD funds become available and he can strike out from our home. I know people who are in this phase now with their children, and the options for keeping them occupied are extremely limited.

Extremely limited options never work well for our boy.

I’m always interested to talk to people about their plans for their son’s or daughter’s future, and I’d love to hear from all of you. I have to say despite hearing about that long gap between graduation and the kick-in of services I was hopeful that by the time Justin reaches majority, I believe there will be more safe housing and employment options open for parents to choose from.

Considering what I’ve been hearing since Justin was diagnosed almost a decade ago, I feel more hopeful we can locate a place where my boy will be safe, productive and happy, which is all I’ve ever wanted for him. If you’re so inclined, please share your thoughts on your child’s future residence, I’d love to hear them!

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2 Comments »

  1. Linda Simpson said,

    You wrote so beautifly about what we all would like to say to anyone who looks at our children in such a mannor. Where is the understanding? Thank you.


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