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?

A Reason To Celebrate

Back in May, I shared the good news that this year would be the last year the Jerry Lewis would host his annual pity party on Labor Day weekend, better known as the MDA Telethon.

Those of you who have been long time readers of my blog know how I feel about Mr. Lewis and his attitude and beliefs about people with disabilities.

Well, now the news is even better! Jerry Lewis is OUT completely! The MDA announced at the end of last week that Jerry Lewis would not be returning this year or any time in the future. No reason was given for this decision, but I like to hope that the voices of people with disabilities helped make this decision.

To check out my past writing on this subject, you can check here and here, and as I said before, good bye and good riddance, Mr. Lewis.

Good Bye and Good Riddance

(picture courtesy of Steve Marcus, Associated Press)


I read some good news today – Jerry Lewis’s annual pity party – excuse me, telethon – is only going to last 6 hours this year, not the normal 21 ½ hours. Then I read even better news – this will be Jerry’s last year for the telethon.

I wrote last year about some of the abhorrent comments made by Mr. Lewis, and about my opinions on those comments.

My opinions on this panderer of pity have not changed in the least. My children need to be accepted and included regardless of their disability. It is well past time for social change, not more money grubbing in the name of pity.

I’m all for research for cures and prevention, but I don’t believe you have to parade a bunch of ‘Jerry’s kids’ in front of the world to seek money for that research.

As Mr. Lewis shared on the CBS Sunday Morning Show on May 20, 2001, "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

Sorry Jerry, we will not be staying in our houses and we don’t want your pity.

Good bye and good riddance.

Breaking Out the #2 Pencil

This seems to be the season of surveys.

I’ve gotten one from our state’s program that supports students with deafblindness. They wanted to know what they could do to help youth between the ages of birth and 21 who happen to have deafblindness. That survey took me about 20 minutes to complete, and I’m betting my answers won’t be well-received.

A second survey arrived, this one from my community service board. The community service boards provides case management and other elusive services to people with intellectual disabilities. That one took me about 15 minutes, and again I’m betting my answers won’t be well received.

Then came the survey from my oldest daughter’s day support program. Of all the organizations that purport to provide support to one of my children, the day support program does seem the most interested in the clients’ and client family opinions. Over the years I have noticed positive changes.

Finally, my school district sent home a satisfaction survey. Each one of my children who are still in the public school system (4 of them) brought home the same ‘circle the most appropriate answer’ four page survey. Parents were told to return the survey within 15 days, but starting on day 5, we got phone calls, notes from teachers, and brain-washed comments from our children about returning the survey. I imagine a computer will read the responses and spit out data interpretations.

I appreciate that all these organizations are asking for my opinion, but I wish it were a little less structured. How about sitting down with me, or calling me on the phone so we can just chat?

An organization that provides post-adoption support services for my family conducted their satisfaction survey that way one evening this week, and I had a much better feeling about the whole process. Talking to a real person – a person whose name I recognized – was much better than filling in circles with a number 2 pencil.

I’ll just wait and see which, if any, of the organizations does actually make some changes….