How To Begin?

Are you the parent of a teen with significant disabilities, or do you provide services and support to that teen? If so, I need your advice.

It’s transition IEP time for my Ashley. Although technically my school district and I should have been talking about transition already (Ashley is going to be 16 years old next month), I was too focused on her moving to high school and receiving appropriate educational services. But now it is time, and I honestly am not sure where to start.

I mentioned last week that I was very pleased with the IEP and transition planning for my 20 year old daughter, Jessica. But Jessica’s disabilities are more commonplace than Ashley’s. Jessica fits into a model transitional approach and Ashley does not.

Ashley, as you may know if you have read my blog previously, is deafblind. She also has a seizure disorder, and her seizures are not completely controlled by medication. She still has 2-3 seizures a day on a good day. She approaches life with unbridled exuberance and doesn’t mind sharing her opinions, likes and dislikes with anyone.

Throughout elementary school and middle school, my school district underestimated her abilities. High school appears to be different. She has teachers who care and believe in her, and I truly think they want a good transition plan as much as I do.
But how do we get there?

So here’s where I need your advice. What approaches to transition planning for a teen with significant disabilities have you seen work successfully? What were the pitfalls along the way? And most importantly, is your child or the child you support happy with where he/she is in life post-school?

Thank you in advance for any help and advice you have to offer!

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?

A Virtue

Pretty much everything we do as a family takes a long time.

When we decide to go out, we have to start getting ready at least 30 minutes before we need to leave. Backpacks need to be packed - medicine needs to be packaged - trips to the bathroom need to be made - extra food needs to be brought - and 'diversions' need to be remembered. I feel like we are being spontaneous if we get out of the house in under 20 minutes.

Getting two children in wheelchairs into our vehicle takes a while also. Then making sure everyone is buckled in and nothing has been forgotten, and we are usually pulling out of the driveway in another 10 minutes.

When we arrive at our destination, we reverse the process - and it takes a while. Chairs unloaded - children loaded - backpacks and other paraphenalia accounted for - there goes another 10 minutes.

But it's when we are leaving a public place - a store or restaurant for example - when our slowness seems to really irritate people. Whether it's the person waiting for our parking spot, or the people whose paths we are blocking with the wheelchair ramp - often they really get annoyed with us.

I've also noticed that annoyance on school mornings when the bus arrives. As with our vehicle, lowering the wheelchair ramp, backing Ronnie's wheelchair onto it, making sure the safety strap is in place, then raising the ramp into the bus takes a few minutes. After Ronnie is on the bus, then it is Ashley's turn to walk to the front of the bus and board via the steps. She can't board the bus until Ronnie is on because the bus aide must be there to assist her up.

There are usually 3-4 cars stacked up in either direction waiting for the bus to turn off the flashing red lights, and I can read the impatience on the driver's faces. Sometimes a driver will get so impatient that they will turn their car around and take another route.

Why the annoyance? Why the impatience? I really don't try to go slowly - it's just the way things are for my family. And really, is an extra five minutes such a burden to others?