Category Archives: Adult Life

Trial Work Experience, Oh My!

The services that the Division of Vocational Rehabilitation offers make so much sense. The goal is to mitigate factors that make competitive employment difficult for people with disabilities.  The idea of “Supported Employment” looks like it fits our situation, over here, like a glove. But it is not a glove, it’s cheese…and I am a mouse. I have run the gauntlet in search of my tasty prize – the walls of the labyrinth are made of red tape, long waits, inept agencies unprepared for their stated missions and misinformation. I wrote another post explaining the pitfalls of all this here.

But one sunny day, 13 months after first meeting with DVR, Ethan was offered a spot with an agency that could provide a legitimate Trial Work Experience during which someone would take him out into employment situations in the community to assess if he is eligible to be supported by DVR. Baby steps.

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What’s Working?

Do you need to hear good news? I swear, I’ll try to wrap this up optimistically. Bear with me, won’t you?

First let’s talk about “What’s Not Working?”

Ethan!

That’s right. He is not working.

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Transportation Woes

Ethan will never drive a car. Ever again.

Occasionally, you might hear a story of a person with Down syndrome with a drivers license. I am happy for them and their parents, but I feel that when a story like that is publicized, it sends a message to parents and the general population that is faulty. I know that it is meant to be encouraging, but the way I work it out, it’s like telling the parents of a typical newborn, “You know, I heard that some of these kids become US Olympians”. I did the math. Similar results. Even if it is possible for a tiny handful of people, it is not a practical probability for most. If you add in all the other folks with intellectual disabilities and adults with autism, you have a whole lot of people who need rides to get to their destinations.

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The Graduation Party

There is no party like a “Midland” family party. Our kids excel at partying 🙂 They were happy to be together celebrating once again.

It took me only a few minutes to notice that most of the parents were wearing similar expressions as we glanced at one another. I was familiar with it – I see the same expression on my own face. ‘Deer-in-the-headlights’ sums it up. ‘Shell Shock’ works as well. We tried small talk. We tried meatier subjects. Someone suggested we take it outside.

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Limbo

Nope. Not the party game. It’s more like the metophoric ‘we-are-not-in-hell-but-haven’t-made-it-to-heaven-either’.

coloring

After graduation, Ethan left the ‘educational entitlement’ segment of his life. The school district is no longer responsible to provide programming for him. He also has not turned 21 yet, which would place him into the ‘adult services’ component of his life. It’s soon, but not now.

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Precipice

Friday is Graduation Day.

Friday, we veer off of a familiar path that we have come to be able to walk in the dark and in our sleep. One foot in front of the other ~ it has been safe, predictable and controlled. It supported us and Ethan in a way that made our lives hum.

14 years.

That is one well-worn road.

We have puzzle pieces to put together, but we don’t have the picture on the front of the box to work from. We need to invent, create and construct whatever it is that is going to build the minutes into hours, and hours into days, and days into meaning and substance.

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“Here goes…..
better throw my hand in………
wish me happy landing…….
all I gotta do is…………
JUMP!!!!”  ~ Aladdin

Picking a Support Coordination Agency

I was given this brochure back in October. I actually followed the suggestions. I wholeheartedly advise diligence with this task.

I also asked every, single person who already had a SCA who they were using and if they were happy with the service being provided. I asked every agency and program that I had contact with that serves people with developmental/intellectual disabilities who they felt was doing a great job. I asked them which agencies they loved, and if they would divulge, who they really did not like. This all went in The Notebook.

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Timeline for 2016 Graduates

I opened my email a few days ago from Ethan’s school. It was a modified date for the last day of school.

THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL

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