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?


Krystle said...

Ugh. I just wanted to say I'm sorry you are worrying about this (even though it's completely justified).

I don't have anything to offer as we are on the opposite end of the spectrum age wise.

But you are great! And I have complete faith you will figure all of this out well ahead of her school deadline. Hugs.

Andrea said...

I worked for a year at two Assisted Living Units in Maryland. They were FANTASTIC. Basically, it meant three adults shared the house. They each had their own rooms, furniture, etc. There was a live-in manager who had an apartment in the basement (that was me! they targeted grad school students and paid their tuition in special ed or human services) and full-time day and overnight staff. We cooked, helped with hygiene, gave meds, etc, but also just hung out and took them to movies and out to eat and arts & craft classes... basically whatever they liked to do. During the day they went to a vocational program that taught em job skills, gave them physical therapy, etc. The ones who had jobs (whether paid or unpaid) got driven to and from. Not everyone who lived in the houses lived there because their parents were dead or didn't want them. A lot of them had really good relationships with their parents and went home every other weekend, holidays, etc, but lived in the ALU so that they could feel like real, independent adults. So, yeah, I don't know if they have them in VA, but seriously, I loved my job and only left it because my dad died and I moved back home to help my mom, but I still keep in contact with most of my "ex-clients" ...basically all the ones who are verbal and/or can use the internet. The ones who aren't... well, I'm visiting in Nov so that should be awesome. Anyways, let me know if you want more info!! My email is andrea.b.arango@gmail.com and my blog is estrellitasymar.tumblr.com

Ashley's Mom said...

Hi Andrea! I visited you site and we definitely should talk. I'll email you once the start of school settles down a bit.


DeeAnn said...

Okay, I've been there. My son is blind and autistic and I kept him in the school system until the day before his 22 birthday, which is the limit. Well meaning people will make you feel like your child must have some kind of job, but I felt a whole lot better when I came to realize that "a job" was not a good fit for my son. He has attended the same Day Program for years now. It is much like a school setting and every day they get to look forward to doing something different. For example, Mondays bowling, Tuesdays BINGO, Wednesdays the park, etc.

There should be programs like this in your area. The biggest thing you should worry about, at this point, is getting your daughter on a list for funding. Your schools should be able to give you information about this. It is funding from our State Department of Disabilities that keeps my son going to his program. We put him on their waiting list when he was around your daughters age.

I hope this was helpful. My son just turned 30 (although he looks and acts much younger). I would be happy to help you if you have more questions or concerns. Just drop me a note on my blog and I will be happy to communicate with you through email.

Ashley's Mom said...

DeeAnn, thank you! I'll be in touch!

mommy~dearest said...

Yes....I worry about this as well, and my son is 9. It's such an unsettling feeling. Some really positive comments above though!