Disability Corner

[Wembley]

Well.... I've done a lot of work with children and young adults with severe disabilities - like TBI (brain damage), spina bifida (a physical condition in which the spinal cord does not grow properly before birth) and cerebral palsy (a form of brain damage that can affect movement and speech).

Many of the people I've worked with as a respite care provider (I would take care of the person in order to give the parents or primary caregiver some time off) were fans of the Muppets and for some odd reason, WWF wrestling. In fact, one kid I worked with (actually he was my age) loved Sesame Street, and I bet he would have loved Fraggle Rock had I owned tapes at the time.

Most of the people I worked with had cerebal palsy. The interesting thing about CP is that, while it can occur alongside other conditions that may affect intelligence, people with CP usually have normal or above normal intelligence but may appear to be unable to understand anything due to limited ability to communicate. The person I mentioned before needed total care for feeding, dressing, bathing etc, and was unable to speak, but he understood what was going on perfectly well. We used to go out and do lots of fun stuff, like trips to the mall, movies, etc. His favorite thing to do was to go swimming at the state park. While he was unable to walk unaided and needed to be carried down into the water, he was able to do pretty well in the water, only needing me to hold his head up.

I consider myself very lucky to have been able to work with this person. When I was getting to know him at first, I was of course, nervous - as I'm sure he was as well. However, my fears were quickly laid to rest when he and his parents were going to meet me at the local Burger King. They had positioned his wheelchair so he could see the road, and when my car passed a traffic light a quarter-mile away, his parents told me he became very excited to see my car, and he watched my car very closely to make sure I didn't miss the entrance to the restaurant. His folks also said that each time they drove by the road to my house, he would always become excited and hope they would take him to see me.

Unfortunately, in 1999 he died - unexpected to us all. I often think back about the time we spent together and wish that everyone could experience the personal rewards I got from working with him. To use my skills and abilities to help someone experience life to the fullest is one of the best things I can do.

It has taken me almost an hour to compose this message. In fact, while I often talk to people about the types of work I've done with special needs kids, I don't often talk about my personal experiences.

While today I don't deal with special-needs kids, I'm just a lowly cellular-phone customer-service rep now, I only got out because working as a part-time respite provider does not provide things like health insurance, etc. Would I still do it today if I could? Probably. Unfortunately, the pay just isnt there. I might take on some respite work again, but it would have to be on a part-time basis only in order to maintain my benefits with where I work now.

Well, I know I've been long-winded here. If anyone reads this (I'd be surprised) thanks for your time.

--Rick "Wembley" Miller
..."You can NOT leave the magic!"

EDIT: I probably should have clarified that the kid I was talking about had cerebral palsy which affected his ability to communicate and move. In spite of his outward appearance (at 19 he was the size of a 12 year old and had no control over his arms and legs) and lack of speech, he was highly intelligent and a great person to hang out with!

 

[Katzi428]

Hi Rick!
I read thru your post(yes...the WHOLE thing! One thing that caught my attention was about the person that has (or had) Spina Bifida.As I posted, I have hydrocephalus (which is commonly associated with S.B) Luckily I wasn't diagnosed with spina bifida,but I have poor coordination.
I'm sorry about the kid who died from cerebral palsy. But at least you took good care of him.
Kathy

 

[Wembley]

Hi Rick!
I read thru your post(yes...the WHOLE thing! One thing that caught my attention was about the person that has (or had) Spina Bifida.As I posted, I have hydrocephalus (which is commonly associated with S.B) Luckily I wasn't diagnosed with spina bifida,but I have poor coordination.
I'm sorry about the kid who died from cerebral palsy. But at least you took good care of him.
Kathy

Kathy:

You might want to read my above edit. The kid I was talking about had cerebral palsy, not SB. (EDIT: Oh, wait, you got that...)

Generally, spina bifida causes paralysis of the lower body, incontinentce, learning disabilities, and, yes, hydrocephlus. A person can have it and not even know it, or can completely paralyzed from the waist down. It all depends on where the break in the person's spinal cord is and which nerves are involved.

Many people think of the spinal cord as one nerve that runs up and down the person's back. In fact, the spinal cord is a large group of nerves, each one going to a certain part of the body. Each person who has SB is unique - I've worked with kids that were full-time wheelchair users and completely "dry" and other kids who were completely able to walk but wore diapers all the time. I spent a summer working at a camp for kids with SB, so I got a lot of experience with lots of different people. Ever take 30 kids in wheelchairs camping in tents and have the rain come in overnight? Fun indeed.

As far as hydrocephlus goes, about 80 percent of kids who have SB also have hydrocephlus. Generally it requires no special daily care although usually shortly after birth, kids that have hydrocephlus usually have a shunt placed, a tube that runs from the skull down to the bloodstream or chest cavity to drain off the excess fluid in the brain. It is important to know the signs of shunt malfunction however, as the tube can become blocked and need replacing. At one time, I knew all the symptoms of shunt failure but since I've been out of the respite-care business for a long time I dont remember them off the top of my head.

Of course, there is a lot of other things that can be a part of (or a side effect of) SB. Some of the kids I worked with had other orthopedic issues that involved specialized bracing, pressure sores from being in wheelchairs for a long period of time, and even seziures and mental issues. Each week when we got new kids, we had to familiarize ourselves with the files on the kids we had coming in. Definitely interesting, and always a challenge!

--Rick "Wembley" Miller
..."You can NOT leave the magic!"

 

[Whatever]

Wow. You are obviously a very special person to be able to do what you do and you should be proud of yourself. I'm glad you had so many happy experiences with your friend. And yes, I read the whole message!

 

[That Announcer]

I too am disabled, but not to nearly as serious an extent as some of you are.

Everyone in my family suffers from OCD, I should probably tell you that. I am asthmatic (like Diana) and was recently hospitalized, forcing me to miss a school play. I have excema and suffer from severe anxiety and depression. The real problems in my family come with everyone else.
My uncle and aunt are both morbidly obese. My mother has hyperthyroidism. My one grandmother is totally deaf and relies on hearing aids to hear what little she can with them in. My father also suffers from depression.

The saddest case of disability comes with my wonderful grandfather. He recently underwent surgery to have certain organs removed due to cancer, and can no longer function too well.

My buddy Brogan suffers from pretty severe ADHD and anxiety- and he's not the only one I know. I have been death threatened several times by he and others.

I'm really glad I got that off my back.

 

[Wembley]

Wow! I am very sorry to hear that about your grandfather - my dad died of cancer in 2003, he spent the better part of a year fighting it, but it eventually got too bad to deal with.

You know, working with the special-needs kids that I have really causes me to think about just how lucky I am to have all my parts working properly, etc. I think that everyone should get to know someone who is disabled while they are in school just so they realize that just because someone uses a 'chair, can't speak, is blind or deaf (or both!) etc, that they are just the same as everyone else.

I look forward to reading more on this thread!

--Rick "Wembley" Miller
..."You can NOT leave the magic!"

I too am disabled, but not to nearly as serious an extent as some of you are.

Everyone in my family suffers from OCD, I should probably tell you that. I am asthmatic (like Diana) and was recently hospitalized, forcing me to miss a school play. I have excema and suffer from severe anxiety and depression. The real problems in my family come with everyone else.
My uncle and aunt are both morbidly obese. My mother has hyperthyroidism. My one grandmother is totally deaf and relies on hearing aids to hear what little she can with them in. My father also suffers from depression.

The saddest case of disability comes with my wonderful grandfather. He recently underwent surgery to have certain organs removed due to cancer, and can no longer function too well.

My buddy Brogan suffers from pretty severe ADHD and anxiety- and he's not the only one I know. I have been death threatened several times by he and others.

I'm really glad I got that off my back.

 

[HPDJ]

I'm Dyspraxic

 

[Fragglemuppet]

Well, this is it, but maybe bumping it was a bad idea. I'll let you be the judge.

 

[BeakerSqueedom]

I suffer from paranoia. x)
[does not believe in psychology stuff..however, this is just a way to describe it]

Not to be funny, but I'm so cautious of everything around me.
Many times I've been teased about that.
Then again, it was from all those beatings in highschool.

I sometimes smile a little oddly to people when they mention something I don't like...

I love children, but I always return to my past tragedies in Elementary. Then I kind of avoid them.

I was always labeled as "eccentric" from that and due to my creative/ darkly abstract art as a child.

I loved drawing disturbing things---I just had a too much of a wild imagination.

I rather changed my tastes to adjust to my friends' comfort.
I was real maniacal when it came to drawing.

Now, I put on that "bouncy" nature.
Only because my drawings would not be suitable for the forums.

Nah, I was never a "goth".
I just liked certain things.
[I hate black, in fact....I'm more into yellow]

I am known to get too drawn into my imagination (safest place in the world). But as I said earlier, I'm a cautious person who doesn't deal well with others and prefers her mind than anything else.

Hah.

I was nearly sent to a loony bin...
But that's because I was overly active, strange, affectonate, and paranoid.

This was in elementary where the teacher worried about me alot.
She'd sit me down in front of a psychiatrist who talked hypnotically to me.

I wrinkled my nose and said "What do you want from me? You want my doll, right? You can't have her. I lost all my other toys because they were taken away. You can't have her...Oh, and you look weird. Why you talk like that? Wanna play dolls? Oh! Oh! I want to play checkers! Let's go do that..."

---

Middle school was wen things got real heavy.
They sat me down once again with this soft-spoken girl (wanted to rip her hair off). "So, I was told you do some odd things....can you tell me, Claudia?"

I blinked at her.
"Lady, I'm just doing my work, ok? I'm not a nut-case! (I smile a little...forced) What do you want from me? Seriously, have a problem with active people? I sure don't see you do anything. Just sitting around like an old walrus." (She was skinny...frail)

I just pointed at her "I know what you want to do! Fill me with drugs! Yes, I won't let you do that, you see." I'd just waltz out of the office.

After many unsuccessful actions.
They decided to put me in a school of the mentally derranged.
Thankfully, I never went because I knew that I wasn't insane.
They just wanted me there.

Mom told me it had metal bars; medicine outside each door.
I cried because they thought I was nuts.


So point is, I tend to be weird/paranoid.
That's my disability/disorder.

>) But heck, those two things got me so far.

I guess everyone should embrace their disabilities/disorders.
There may be something special about it.
In a good way.


---

PS

Had teachers that were people from the military.
They were horrible, and that assisted me in my "paranoia".
'specially as a kid.

 

[tutter_fan]

I have Williams Syndrome, which means I'm missing Chromosome #7! It doesn't prevent me from being myself!