Tuesday, September 13, 2011

Dreading The Next


I think I’ve lived in a state of denial the past couple of years when it comes to thinking about Ashley’s post-school life. She is 16 and we do have some time, just a little time, to figure things out, but I am at the point of worrying now.

Research shows that employment for people who are deafblind and multiply disabled is not good. That same research shows most of those people end up just living at home or in a *facility*, unable to find work.

I hope to be around for a while yet, but I do still worry, and worry seems like too mild a word for my emotions on this subject, about what will happen with Ashley when I am no longer around. I don’t believe she will ever be able to live independently, and even if she could acquire those skills, would she be able to find a job to support herself? And, with my experience with *facilities*, I don’t believe there would be anything worse that could happen to her.

The school system is not doing a very good job of preparing Ashley for life after school. Yes, we have functional goals in her IEP, but the school’s investment ends when Ashley leaves school, and sometimes even sooner. There is a one size fits all mentality in the school when working on job skills. “let’s all go wipe down the table in the cafeteria” for example. I have yet to see a real interest in discovering what Ashley prefers to do, what tasks interest her, and what tasks drive her crazy. If her preferences are not factored into the training, it seems to me to be a total waste of time.

In Virginia, we do have a rehab services agency that purports to serve people with disabilities who want to find a job, and training for a job. That agency won’t become involved until the last year of school for the student, and at present, have shut their doors to all because they say they are out of money. It’s too late to wait until the last year of school. And my experience with this particular agency is that they will work with the more mild disabilities, but send them someone with multiple, less common disabilities and they throw up their hands.

So, any of you in a similar situation as mine, what have you done or what are you planning to do for the post-school years for your child with multiple or less common disabilities? Is your child going to stay in school for as long as possible? Have you found private agencies that serve adults with disabilities to be more proactive than government-run agencies? And, at what age did you start working on a plan for your child?

Are you as worried as I am?

Monday, September 12, 2011

We Shall See

Apparently I ruffled some feathers last week with all my calls and emails about school bus schedules. On Friday, I got a call from the head of transportation and one from the director of special ed. The special ed director even offered compensatory services for the time that Ronnie has missed by being at least 30 minutes late for school each morning.

After I arrived home from work, I got a phone call from the second in command of transportation. That gentleman said that beginning Tuesday, Ronnie would have a different bus and a different schedule. The new schedule has him being picked up at 8:17am.

Of course, the first bus had a promised schedule of 8:20 am so I guess I will have to wait and see if the new bus will actually be on time. I sure hope so...

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The weekend was difficult with all the 9-11 tributes. I watched hours of shows, almost as much as I watched when the events were originally unfolding. My grief and sadness was just a raw as it was then, and the tears just as plentiful.

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When I wasn't watching the 9-11 tributes, I was absorbed by my own little marathon of The Good Wife. I never watched the show when it was on TV, but several months ago, I started watching season one on Netflix. After just a couple of shows, I was hooked. I couldn't wait for season two to come out on DVD, which it did this weekend. Now I just have to get in 16 shows before season three starts this coming Sunday!!