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?

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!!

The Clock Is Ticking

It’s the end of the first week back at school, and for the three of my children still in the public school system, almost everything has gone very well. But, the one thing that hasn’t gone well is very very not well.

In my town, high school starts at 8:45 am. The past two years, Ronnie and Ashley went to the same high school and were picked up by the same accessible bus. The bus driver knew my family well, and understood that as a single parent, getting to work on time was important. He changed his route schedule just a bit to pick Ronnie and Ashley up first. That allowed me to get to work on time. Not so this year….

The problems started the Friday before school was scheduled to start. As I always do, I called transportation to verify that I still had the correct bus numbers and schedules. Ronnie moved to a new high school this year, so I was dealing with two bus numbers and schedules.

When I called, the transportation office gave me the bus number and pickup time for Ashley – bus number 1980 and pickup at 8:16 am. That was going to be a problem by preventing me arriving at work by 8:30 am. But, I figured I would let the transportation issues settle in the first week, and then I would make my request for an earlier pickup.

Next, I asked for Ronnie’s bus information. “Ronnie who?”, they said. Even though his IEP denotes special transportation with pickup and drop off at home, there was no record of that need. I tried to reason – I called the school teacher and principal – I got angry – and then I drew a line in the sand. Ronnie would not be at school the first day unless someone picked him up.

Perhaps as retribution for that line in the sand, on Monday (Labor Day) I got a call saying bus 300 would pick him up at 8:20 am. Again, that’s a problem for me getting to work on time, but again, I decided to let things ride for the first week.

Here’s how the first week went:

Tuesday – Ashley picked up at 8:30am, 14 minutes late. Ronnie picked up at 8:55 am, 35 minutes late and 10 minutes past the start of school. Once he arrived at the school, I estimate he was about 30 minutes late for school.

Wednesday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:50 am, 30 minutes late, and again, late for school.

Thursday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:45 am, 30 minutes late and again, late for school.

I’ve called and emailed and whined and begged and been professional all the while. The only response I get from transportation is that they are discussing to see if there are any other options.

Well, school district, here’s an option – you are not providing services as outlined in Ronnie’s IEP since he is late getting to school each day. I feel a state Department of Education complaint brewing, and compensatory time building.

The Beat Within

How about some awesome ASL-translated music for the dreary, rainy day? I think it's just what the doctor ordered!!

Special Exposure Wednesday

Being lazy the day before school starts...

A New Girl

I'm very interested to find out if Ashley's teacher and other school staff notice a difference in her now that school is back in session.

Ashley and I worked very hard over the summer to reduce and then eliminate two of her medicines, medicines she has been on for over 10 years. The side effects of those medicines include drowsiness, agitation, and a general malaise. I think the difference is pretty astounding, but am interested to see if others notice.

When Ashley met with her neurosurgeon last week, he noticed a difference. He believed she was more aware, more engaging, more in-tune with the world around her, and I agree completely. Of course, that comes with its own set of challenges!

Those teenage behaviors which can wear a mother down are more pronounced now. There is more emotion, more opinion, and yes, more drama. But there is also more understanding, more learning, and more 'presence'.

It is difficult at times but I love it!! Let's see what the school staff thinks :)

Earning the Tee-Shirt

We can now officially wear the "I survived Hurricane Irene" tee-shirt.



After 7 long days and even longer nights, our power was restored, and my life got better. I told you in my last post that I would be back as soon as the temperature inside my house was cooler than outside my house, and by Saturday morning, that was the case. It was then on to tackling the mountain of laundry that had been building all week, and now it is Sunday evening, and all the laundry is done!



The first few days after Irene stopped in for a visit were sort of an adventure. By day four, we were all cranky, hot and ready for life to get back to that which we call normal.



I know we did not have it anywhere near as rough as others. In fact, there are still about 10,000 people in my area who still at the end of day 9 do not have power. And then there is the tragedy of North Carolina's Outer Banks. They weren't wiped off the face of the map, but it was close.



I am very thankful for the generator that we have, even though it did die on day 6. Thankfully the generator repair folks were Johnny on the spot and got it fixed in a couple of hours. And, I am thankful that I had an air-conditioned office to go to each day. It was 8 hours of respite from the heat.



Now, Hurricane Katya is headed our way, but the hopes are that it will turn before it hits the East Coast. I sure hope the forecasters are correct because otherwise, I am packing up and heading far, far away...



Now on to the next challenge of our life - the start of school!!!

Need a Break

It's been a rough week and it doesn't look to be getting any better for the next few days. Hurricane Irene hit last Saturday and we have been without power since. Our power company now projects our power will be restored late Saturday night.



Four more days.....



I'm exhausted from not sleeping. I'm sick and I think Ashley is also. I'll find out when we go to the doctor this afternoon.



I'm tired of being hot, tired of not being able to do laundry, tired of our routines being tossed about and shaken up. It's not sitting well on any of us.



So, I need a break. I need to not do all my whining here. I need to just go away until it is all better. That will be when my power is back on....



See you again when the temperature inside my house is cooler than the temperature outside....