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?

The Next Phase

The struggles to ensure a future for our children with disabilities never ends, does it? First we have the school battles, fighting for the things we know our children will need to succeed in the future. Be it a special reading program, instruction in how to travel with a cane, or extra school time – it often seems that we have to fight for everything.

Then there are the medical issues we face. The search for a diagnosis and proper treatment. Sometime we get lucky and find doctors who share our commitment to children with disabilities, but more often than not, we endure long waits, doctors who don’t ‘get it’, and other medical staff who act like we and our children are a nuisance.

And I would be remiss if I left out the struggles for community acceptance, finding a church home, and all things surrounding physical accessibility.

I am now, however, moving into a new realm of struggles – the fight to ensure my Jessica can find a job that she likes and which she feels is something she wants to do with her life.

I had sincerely hoped that the school system would do an adequate job of preparing Jessica for employment. IDEIA says they have to. Well, I don’t know about you, but that hasn’t happened yet. The school has worked on things like cooking, doing laundry, and hanging up clothing. But what about filling out a job application, showing up for work on time, getting along with co-workers, and specific skills that Jessica would need to find a job?

I knew I couldn’t count on the school system to completely prepare Jessica, but I had an ace in my pocket, or so I thought. Our state has an agency called the Department for Rehabilitative Services. Their published mission is to help people with disabilities find employment.

Since our last two meetings with that agency involved me taking an attorney with us to the meeting, you can imagine how well that is going.

I won’t go into too many details yet, but this agency that is supposed to help Jessica seems to grossly underestimate her abilities, and in fact, will only speak to me when Jess is in the room.

I’m going to keep trying. I’m calling for an IEP meeting and inviting the DRS staff. My hope is that the two organizations will work together for the common goal of preparing Jessica for employment.

Shall we start taking bets now on how well that will go?

And Then What?

Two different people asked me last week whether I intend for Ashley to stay in school until she reaches her 23rd birthday (which is allowed under IDEIA), or if I will let her graduate with her class. Since Ashley started high school this year, perhaps I really should have an answer to that question, but I don’t.

Those of you with young children with special needs probably haven’t given much thought to the age at which your child will leave school. I know I didn’t. That time just always seemed so far away, something I didn’t need to think about. But with Ashley in high school this year, should I have an answer??

My first thought is yes, Ashley will stay until her 23rd birthday because the more education she gets, the better. But then I tell myself that for the most part she isn’t getting an education in our school district. Her real education comes from homeschooling after school and on the weekends. So if that is the case, what’s the point of her staying in school. It’s not like she is going to get a standard diploma if she hangs around. In my state, she will get a ‘certificate’ of completion, and she can get that with four years of high school or with 7 years of high school.

Of course, whenever she leaves school, there must be a plan for the next years. Where will she work? Where will she live? How will she connect with people? Who will be her ‘community’? There is so much planning and so many supports to be put in place for the post-high school years, that it seems very overhelming.

I honestly don’t know how to approach this whole issue. If any of you have older children, and have faced this issue, I would love to hear what your decisions were and how you helped your older child move to the next phase of their life.

Today I am thankful for our pediatrician’s office which has office hours for sick children seven days a week.