Off to Work We Go!

Three years ago, my profoundly autistic son turned eighteen.

I thought there was a lot to handle then. Revamping our somewhat neglected will with our special needs lawyers.

Filling out endless documents to obtain guardianship.

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Diving into the quagmire that is Medicaid and SSI (and surfacing triumphant).

It was a lot, what with two working parents, two autistic kids, and my brain, which really loathes paperwork and “government speak” and would happily have left it all to my husband to accomplish if possible.

We got through it, and took a breather.

Then, he turned twenty.

I had thought I’d mastered the acronyms. The DDD (Division of Developmental Disabilities), the NJ CAT (NJ Comprehensive Assessment Tool), SSI (Supplemental Security Income).

I found a whole new world of capital letters awaited me.

IFSP (Individualized Family Service Plan)

SP (Supports Plan)

CCP (Community Care Plan)

DVRS (Division of Vocational Rehabilitation Services)

SES (Supported Employment Specialist)

DSP (Direct Support Provider)

CBS (Community Based Support)

SC (Support Coordinator)

We eventually made it through his twentieth year and his graduation ceremony, an event which my friend whose son had also attended our son’s school aptly defined as, “the best worst day ever.”

We found him a program where he is thriving.

We made it over the cliff.

And we took another breath.

And finally, over this summer, I got a chance to really look at his life, think about what I would miss from his school years, and try to duplicate it as much as I could in his adult life.

And it struck me, that the one thing he might miss that I could replicate, was volunteering.

For the past four years my son was able to donate about two hours a week at a local municipal building, shredding papers and removing staples.

It doesn’t sound like much.

But he loved it. I dare say he felt a sense of accomplishment and pride, as evidenced by a few photos sent to me over the years.

And I want him to have that feeling of achievement yet again.

Since he was not being paid a wage, an employee from his private autism school was able to accompany him each week.

Now that he was in the adult world, with a government budget, I wasn’t sure he if could just volunteer through his day program, or if it would be better for him to try the employment route.

Not surprisingly, there is a lot to consider for the latter, and enough acronyms to make me long for the simpler days when he turned eighteen.

When Justin turned twenty-one he received a budget from the government, and was placed on the Supports Program initially. This budget paid for his day program, his transportation, and had a little left over for fun, like the horseback riding he loves.

I found out that he could do either job sampling or volunteering without having to go through DVRS, that his budget would pay to have him accomplish this feat through his day program, should they choose to explore this option.

I also learned that if he wanted to have actual employment, and/or needed job sampling to accomplish this goal, he would have to go through DVRS, and the employment options and the support person for the employment would also be handled through his day program. DVRS would provide training as an individual or a group for two years, and then he would be expected to accomplish his employment on his own.

I found the former option most attractive, as again, he can undertake any kind of volunteering or job sampling with his program through his budget without going through the DVRS process, whose paperwork made me want to cry. And after two years with the DVRS, he would no longer have a support person at his place of employment anyway.

He needs supervision 24/7, so employment is not an option.

It doesn’t make me sad. I feel his life is difficult enough sometimes. Let him be a man of leisure.

His smile is worth it.

It took having my wonderful support coordinator writing a two page missive to explain all the ins and outs to me, and I have greatly condensed it here, and hope it helps anyone contemplating any of these myriad routes with their adult son or daughter.

Ultimately, there is no right path. There is only what works for our children.

My goals for him are to be happy, safe, and productive.

My hope is I can eventually add this little piece of the pie to his life, and make it complete.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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