Saturday, June 1, 2013

Great Expectations

I spent all day Thursday at a special-needs conference entitled, "Great Expectations." It was meant to be a shot-in-the-arm, there was an explanation of codes and services, what we can expect during the 18-21 transitional years, and ultimately, beyond that. The crux of it was that even though the statistics are depressing: 80% of people with disabilities are unemployed, work is possible for everyone. We spoke of such things as Person Centered Planning, thinking outside the box, perseverance and tenacity. Hard to believe there was a parent in the room that wasn't all too familiar with perseverance and tenacity, but the target hit the mark, and I think most of us left with a renewed sense of it's going to be ok, and I can do this.

We heard two remarkable stories of young men "experiencing" disability. That was the term-of-the-day and while I appreciate what they were going for with that one, I am going to stick with "having" a disability, because that does not exclude the fact that all people "with" disabilities are much more than their disabilities, and regardless of how impacted they are, they have gifts, strengths, interests and abilities, too. Speaking of which, one of the men, now 32, was not born with a a disability. He nearly drowned at age two, was in a coma for seven weeks and in the hospital for two-and-a-half years. He has a traumatic brain injury (TBI) and acquired cerebral palsy. He is non-verbal, and virtually quadriplegic. He has some movement of his arms but it is involuntary. He can move his head and indicates yes by looking at his right knee, and no, by looking at his left. He uses computerized communication devices and is quite adept at letting his wishes be known. At seventeen he told his mom he wanted a summer job, just like his three siblings. Her internal response was, what could you possibly do? She now works tirelessly with other families helping them shift this paradigm and get their family member employed. Her son eventually went to work for He works five days a week, four hours a day, at a competitive wage (which I think is actually minimum wage, but not sub-minimum wage like many people with disabilities). He has held the job for FOURTEEN YEARS. He has an assistant with him that is paid through state funding, but Powells pays this man. With special computer technology, he scans books that are going to be shipped from Powells to online buyers, and gets the scanned information into a computer system, all by turning his head left or right, accordingly.

He loves his job, but it wasn't enough. He wanted to give back to his community. He started a Free Little Library with the help of his father, and two afternoons a week he goes into his local public grade school and early readers read to him to practice their reading.

The other young man is twenty and has Down Syndrome. His is a twin, and his brother was going to leave home and go to college, and he wanted to, too. With some support, but a lot of his own initiative and again, tenacity, he is now living 100 miles from home, in student housing (a Christian, college-age youth center and co-op). He got the ball rolling with a transitional IEP in his new town, and is receiving transitional services while he works to prepare to enter the local community college. He took the entrance exam and missed qualifying by one point. Not to be discouraged, he is studying so he can take it again. The boy wants a post-secondary experience.

Ain't nothing going to stop him from having one.


Anonymous said...

This gives me hope.

Laurie Harper said...

These stories, like Wil's stories, are so important for the "rest of us" to hear (those without special needs children or in my case, children at all)--it breaks us right out of any Boy-am-I-Frustrated whines within our own little lives. So remarkable, and genuinely inspiring. Thank you.

Elizabeth said...

Incredible post -- and so important to share this information as there is much going on on a national level regarding transition opportunities for disabled youth. I will spread your stories myself and thank you for posting about them!

kario said...

What a terrific day! Thanks for sharing your experiences and continuing to be tenacious you.


Amber said...

Very, very cool! I wish more people thought like these people. The world would be better off!!