Saturday, April 14, 2007

Lists and audiences

:) So I've told a few people about this blog. I must remember to be nice.

Also, I gathered up the resources I'm using to tutor Jessie in a list:

I'm getting all public with my bad self.

Waiting for world-wide fame now and adoration now.

Friday, April 13, 2007

How to turn a Wal-Mart talking gift card holder into a communication device

I don't have to tell many of you how stupidly expensive assistive technology is. It is frustrating as hell, especially when you see off-the shelf technology that almost works but is a fraction of the price.

For instance, a 4 button, low tech communication device -- say a Go-Talk 4, is $159 (that's not a totally fair comparison because the go talk is more sturdy and has more levels than my example.) Still, that's a lot of money just to see if your kid will use something. I just made a 4-button device for $4.00 and tax.
There is technology everywhere. But it occasionally just a bit unsuited for the assistive technology use, but not hundreds of dollars worth of unsuited. I found a handful of talking gift card holders from Wal-Mart on sale for $1.00 a piece (regularly 2.88). If I had been smart, I would have grabbed 50 of them. As it was, I grabbed four.

The problem is that the record button is too prominent, making the message too easy to erase, especially if the student is someone familiar with these devices. (And in my case, wants to hear her OWN vocalizations recorded -- which is nice but not the objective.)

So, if you want step by step instructions on how to open one of these things and remove the record button, but still keep it a functional device, here you go:

A photo frame

Here's what my frame looks like. Test the frames in the store because the sound quality varies widely. You'll need a small screwdriver set.

back of frame

STEP 1Flip it over, remove the five screws in the back. (If you're tired of hearing the thing beep, you can take the battery out).

photo frame with back panel removed
STEP 2:Gently lift off the back of the device, taking care not to pull out any of the wires.
STEP 3Remove the two screws that hold the record button in its place (This is the smaller of the two brown panels you see in the picture in step 2.)

photo frame with record button removed
STEP 4:remove gray plastic record button.

STEP 5:reassemble the device.
front with record button removed

This is what the record button space will look like. To record, stick a pencil or other object into the hole and touch the metal conductor that you can see. The frame will beep once. Speak your message and then remove the pencil or other object. The frame will beep twice when you're done. This is bit trickier than using the record button and it might take a few more tries, but, well, that's the point. Hopefully it will keep little (or not so little) hands from erasing your message.

Thursday, April 12, 2007

Autism awareness -- learning to share

The first person with autism I met was three years old. I was hired to help with his ABA (applied behavior analysis) therapy. The goal was 40 hours a week, and like Catherine Maurice in her book "Let Me Hear Your Voice" (which, by the way, I was given a copy of) we were to rescue this boy. On good days I saw it as a chance for him to learn in a way that made sense to him and I saw the joy he got out of being successful. On bad days I viewed it as an attempt to beat the autism out of him before he reached the magic age of 5.

I've met many more people with autism since then (and retrospectively diagnosed an old college boyfriend with Asperger's.). Currently, I'm full time in home waiver staff for S., a 14 year old with severe autism. His mom went the ABA route when he was little and I thank her for it all the time. At the very least, he listens, he knows what "stop" means, he knows there are people in his world, and he is a very loving and affectionate boy. He follows directions, he unloads the dishwasher, he can hold himself together when he needs to. He's non-verbal and probably one of the most autistic people I know. He's a joy. No, he wasn't cured, but we're realizing he wasn't broken. He was given therapy and education that targeted his disability and it shows. He is very happy (except when he can't listen to Shakira or Dean Martin).

Currently, we're doing SONRise with him. I have been enjoying playing with him. I purposely try to forget everything about what I'm supposed to be doing, even the SONrise instructions, and sit and parallel play with him. He twirls things. I sit beside him, twirl things, build things, offer him my Lego's and kentix (sp?) for him to twirl. I sometimes imitate his sounds, I talk, I sing.
He usually kicks me out of the room when I start singing. Everyone's a critic!

The autism organizations are impressive. When S was diagnosed, the incidence of autism was thought to be 1 in 10,000. Now it's estimated at 1 and 166. This is an epidemic. This is a social force. And god bless the parents for getting so many things passed -- the Combating Autism Act, the ABA centers, insurance that will pay for ABA and other autism therapies.

But, it's time to use good social skills and think about sharing. ABA started out as a treatment for autism and other developmental disabilities. I hear over and over about kids who can't get into ABA programs because they have a different disability. Worse, I hear of children with autism diagnoses that might actually have another condition, like Angelman Syndrome, or another genetic condition. The parents don't test because they will lose services. The reason for testing is not to limit your child, but to have more information on health and therapy issues.

Kids with cerebral palsy and Down Syndrome and other disabilities didn't just disappear when the autism epidemic started. In fact, parents of kids with developmental disabilities and people with developmental disabilities themselves built the ARC, United Cerebral Palsy, and other advocacy groups. They passed the ADA, the IDEA, waiver. They led the movement out of institutions and into the community. When the autism epidemic happened, there were networks already there for parents to build on.

Autism is a complex phenomenon. Both of the boys I have mentioned here were typical children until their vaccinations. Both spiked fevers, were sick for days, and never recovered.

I also am very interested in the genetic aspects of autism. I am currently studying Angelman Syndrome, and there is a 15th chromosome link in both conditions. (almost always in Angelman except in 10%-15% of cases where none can be found, but is suspected. In autism, there are many genes implicated, but a small duplication of the mother's 15 chromosome is linked to some types of autism). There are not a lot of genetic tests done in autism -- most diagnoses are based on clinical observations. But those genetic tests, if they were routine, would help us understand so much. The Angelman community is well-versed in genetics because doctors consider it primarily diagnosed by genetics (although experts say that the clinical diagnosis should be first). Do kids with Fragile X-linked autistic symptoms behave differently than kids with duplication of a small bit of chromosome 15? The parents could be essential here in helping us understand this, the way that parents of kids with AS are essential in helping us know whether kids with deletion positive AS are different than kids with uniparental disomy Angelman Syndrome.

But I see great pressure within the autism community to NOT test. What if another syndrome is discovered? A child loses ABA intervention. What if those babies that were sickened by the vaccinations also have a genetic component to their autisms? Does that mean that there's no case against the vaccines? I don't believe that's valid -- if you are mercury poisoned, you're mercury poisoned. But I know how juries and courts and the media will play it -- that genes are destiny and that the vaccinations couldn't have changed anything. I understand the pressure, I really do. But, wouldn't you want to know if your child had a genetic form of autism?

I understand their positions, I really do. I love the boy I work with. I love that because of autism networks, he gets the intervention he needs. I love that so many people are being helped by ABA and other programs. I love the fact that when he was a toddler, his mom sat in the doctor's office with him, wrapped her legs around him, and refused to leave until the doctor wrote her a referral to the specialist. That's the kind of thinking and action that has got the autism community this far.

But, well, share!!!!!! Do I have to write a social story on this? ,Parents and autism organisations: Your kid might recover. That would be great. But your kid will still be a citizen of the world that includes people with and without developmental disabilities. Everyone in this world deserves an education targeted toward their skills, regardless of diagnosis. Those kids with cerebral palsy and Down Syndrome and Angelman Syndrome and Williams Syndrome and Prader-Willi and every other syndrome I can name and many more I can't -- are going to grow up and be your kid's neighbors. It does not serve any of us to have them undereducated.

We can compete for limited services, or we can join together and demand MORE services. It might be time for this movement to consider where it wants to go and who they are willing to sacrifice to get there.

As an incidental, the book that started this all, The ME Book: Teaching Developmentally Disabled Children, by Lovaas, was a description of interventions on children with all sorts of diagnoses -- not just autism.

Sunday, April 8, 2007

We're Going To See Kenny Chesney!

So, I called the Box Office at Alltel Arena in Little Rock and got accessible tickets for M. and me. M. is a big Kenny Chesney and country music fan. Me, not so much into country, although I have quite a selection of it on my computer now, thanks to helping M. download it to her mp3 player.

This ought to be an adventure and I'm excited.

M. can walk but she is a bit unsteady and shaky at times. She has a Jazzy power chair that she can use for such situations, but she isn't 100% comfortable with it. She also has a mini-van, dubbed Arnold, to use with said Power Chair. A summer ago, we went to the Precious Moments Chapel in Arnold, so I know I can drive him. (I came home and told my soon to be husband that I could be married now because I knew that I could drive a min-van. ) Arnold and Jazzy are coming along to concert.

Because Little Rock is about 3 hours away, and I'm narcoleptic and HATE driving at night, and because she has been having seizures or seizure-like activity lately that could possibly get worse when she's tired, we're getting a hotel room. And well, I feel like that's part of the adventure. She's 21. Traveling to see your favorite band or performer and then crashing someplace random is a great rite of passage, as far as I am concerned. I'm excited to be part of it.

There is a small glitch -- she has to go into the hospital for a week-long brain scan. Because she has had a hemisphectomy (removal of a brain hemisphere), we're fairly sure that after the brain scan, the doctors will shrug anyway and say "I don't what causing the seizure activity. She's a unique case." But they won't pin down when she has to come in. There is a good chance that she will miss Kenny. And because the tickets are accessible, I can't just stand at the front door and ask anyone if they need tickets, and sell them back at face value, like I usually do if I have extra concert tickets.

I know that she will be happy to be there and because she's so unsteady, the accessible seating is the best place for her. But after looking at the seating charts, I can see that she's in the back of the second section. (Incidentally, the very last seat before a price break). There is no choice to be up front and screaming and trying to make eye contact. But, well, the front is my favorite place at concerts. She isn't given that option.

To have no choice over where you sit -- that seems minor.
But it's not to me. I choose to take my chances in the pit a lot of the time, knowing full well that at some points in my life, that won't be an option for me.

Accessible shouldn't mean that we have a space for you in the back. I look forward to the day when there is a wheelchair accessible area in the good seats.