Wednesday, February 13, 2008

The Easy Button

It was 7:37 a.m. when I woke up. I had that panic when you know you overslept. I keep my alarm clock 35 minutes ahead so I was trying quickly to do the math. It was really 7:02 a.m. which meant the school bus was already outside, waiting for Dear Son. Dear Son, was sleeping soundly in his bed and there wasn’t any way we’d make the bus. It takes one hour to get him ready for the school bus and that’s if I pack his lunch bag and spare clothes the night before, which I always do. I went outside and informed them to go on.

Inside, I opened the phone book. There must be an easier way. My choices were to let Dear Son stay home from school or take him myself. Without a wheelchair van, I can barely manage getting him into the car. It takes everything I’ve got to lift him in there and if I am wrong, he’ll end up on the ground.

I opened the phonebook to see if there was some sort of wheelchair transport to take him to school once he was ready. The only listing was the local transit system bus. I called the phone number, but of course, we’d need to fill out a 12 page application, and an in-person interview prior to getting approved, and then I’d have to call a day in advance to get service and that’s if everything checked out.

I fell asleep on the sofa the night before. I woke up at 1:20 a.m. and quickly gave him his midnight meds. I usually give them at midnight on the dot but know I have an hour or so either way. Once he got his meds, and his diaper was changed, I stayed up and did some internet surfing and checked my e-mail. I went to bed at 2:30 a.m. and then couldn’t get to sleep until around 4 a.m. hence the oversleeping.

I decided to make the attempt to get him to school. I left my back brace on and got him ready and took him out to the car. I backed the car out of the garage, leaving enough room on the passenger side to get him in. The ground was icy making it risky. Hopefully, my footing would remain secure and his footing as well. Although he can’t weight bear, I can usually tilt the wheelchair totally forward and then swing him into the front passenger seat. I have to wedge my knee between his legs to do this otherwise his feet tangle when I swing him into the seat. I usually count to three before I lift him and ask him to help. If I am lucky, he’ll try to stiffen up for a second and I can make the transition. If he’s not able to do that, he’s on the ground. There is no in-between.

I got in him into the car and broke the wheelchair down into it’s parts. The wheels and the steel base they were attached to, went in the trunk and the rest of it in the back seat. His seat, the back of his wheelchair, the armrests, lunch box, backpack, sling and handlebars were all there. Sweating, I got into my car for the drive to school. In fifteen minutes, I could do this all over again. At least, I was 50% done. At school there would be help, but mainly once I got him out of the car since the male aide at school can’t lift him out of the car by himself. He’s just not used to it. To top it off, there was freezing rain coming down. Could it get any harder?

Once Dear Son was at school I went home to make some more phone calls. I learned that in addition to the transit bus, there was a bus in my county that would also take Dear Son places within a six county area for $1 per mile. I called the office, picked up an application and filled it out on the premises. To do this, we also needed to fill out another form, which required a State ID card.

I wasn’t worried about the State ID card. Our state offers an ID card but also offers a Disabled Card that identifies the person as disabled. It requires a physician’s signature, which I already had. I thought in lieu of a driver’s license, Dear Son should have an ID card, in case something happened to him. After all, he was sixteen now. And the Disabled ID card seemed perfect. If he were in an accident, they would know he was disabled. A few months back I printed the form and got the required signature so I thought I was set. Not.

To get this particular card, I needed that form but four other pieces of identification for Dear Son. One of which was Dear Son’s “written signature.” Well, Dear Son doesn’t have any use of his hands or arms so he doesn’t write. Not only that, he can’t hold a pen, hold a glass or hold anything in his hands. Nothing. There weren’t any other options listed for the disabled or those that can’t write, just a list of acceptable pieces of identification.

One of the other requirements was proof of residency. They wanted a utility bill in his name, or a lease or any of a list of bills in his name. Well, Dear Son lives with me, so we had none.

I attempted to call my local Secretary of State’s Office. Surely there was an oversight. They can’t expect that “all” disabled people can write or live on their own. The only number was a big city number and I waited on hold forever and finally hung up.

We’ll get a letter from the physician and hope that will suffice. Once that is done, we’ll get the Disabled ID card, then send in the form for the local wheelchair transit, and hopefully get approved. Once that’s done, we can go to the grocery store on a weekend or any time he’s home from school for a week’s vacation. Currently, we don’t go out of the house at all when he’s off, since it’s too risky and too hard to get him in/out of the car. I’d love to use it to go to the Arboretum this summer now that the cicadas from last summer are gone.

That was my morning. By noon, I had taken him to school, researched our options, drove across town and filled out forms, came home and made calls and did some internet searching for the Disabled ID card. I still had a long to do list of things to do for my business.

I sure wish there was an easy button. People need to think this stuff through more carefully. It shouldn’t have to be this hard to get a ride to school. I did what every other parent has done in their life, I overslept. I just wanted an easier way to get him to school.

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Note: I am sorry for the delay in posting. I had to take my pc in to the shop and didn't get this posted prior to taking it in.

On a different note, it's been about three weeks since Dear Son had the botox injections to decrease his saliva. It has worked amazingly well! His main issue was that the nighttime choking was so severe, I was afraid he would aspirate. Since the surgery, he hasn't had any episodes as severe as prior to the botox. While he still has days where he has difficulty controlling his saliva, and he still drools, his biggest issue is resolved. He is also sleeping much sounder and much better now that he's not choking through the night. I am sleeping much better too since I don't hear him choking and gasping for breath. Yay for botox!

4 comments:

Poppy Q said...

Oh Dear Mom I have enough trouble getting myself up and off to work in the morning. I am amazed that you are able to do it every day, so you can be forgiven for a wee sleep in. Poor girl, you must be exhausted.

Sounds like you should send a copy of this post, to the manager/CEO of the office that offers the ID cards. In fact I think you should send it to a newspaper or tv station!!

Thinking of you both and hope you get some nice days that aren't such a rush.

Poppy Q and julie

Lois Grebowski said...

Yay for the botox!

Seems like a lot of unecessary stuff to get the ID...sounds like the pinnacle of beauracracy.

Jan said...

We're glad to see you back, Dream Mom. You do an amazing amount of work. Oh, how we wish things were easier for you and Dear Son.

jans funny farm

Baby Island said...

What a day! Sending you a big hug for V-day and glad to hear that the botox is helping. Ahh, the small things right?

Now, for the terrible way the gov. makes our lives so much more complicated than they already are. Some days I am just repeatedly banging my head into my keyboard and pulling out my own hair..

If I can just get through this latest flu outbreak without minion No 1 getting pneumonia it will be a small miracle.. :)

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