OT - Disabled


"Sharonpo" <_Sharonpo_@xxxxxxxxxx> wrote in message news:658f6sF2ef8qkU1@xxxxxxxxxxxxxxxxxxxxx
"E/C Annie" <blake_swann1965@xxxxxxxxxxx> wrote in
news:3e15d92d-de5b-4d3e-807f-33472e42e4d9@xxxxxxxxxxxxxxxxxxxxxxxxxxx
m:

On Mar 27, 12:37 am, "Chocolic" <chatter...@xxxxxxxxxxxxxxxxxx>
wrote:

The internet does have huge advantages over say 10 years ago? My
nephew was born with autism and motor retardation and seizures
and a whole bunch of other stuff. Yet he "looked" normal, except
for the focus of his eyes. He was adorable. My sister spent
years trying to find somebody to diagnose him. She could see,
underneath all the problems, that there was some smarts in him.
And I could too. I could tell you nightmares she went thru when
he would wander during the night when she was sleeping, or taking
him places or problems with babysitters or schools. It was
awful.

The drs tried to tell her to institutionalize him, but she would
NOT do it, no way. She was a single mother working sometimes two
jobs as a waitress and bartender. They all died in a car
accident about 18 years ago. Since then I talked to a "Mothra"
on this ng who has a child with the exact same symptoms and it's
called Angelman's Syndrome IIRC. The more I have read up on it,
the more it fits my nephew exactly. I wish I would have known
that back then. I wish my sister would have had a name or a
diagnosis back then too.

Chocolic

The excitement of knowing there were other people in this world
who had similar issues is exciting and scary at the same time. My
niece is probably the oldest surviving WAGR kid so my sister
sometimes has bitterness towards the younger moms who are
frightened over some of the early issues. That's when she and I
have to talk because these parents know from birth (sometimes
during pregnancy) what the possibilities are. With my niece, we
just handled each situation as it occurred, never realizing that
it could and would entail so many illnesses, behavioral issues,
etc.

You have to have utmost admiration for your sister to undertake
the care of her child under such circumstances. See, I still
don't believe God gives these very special children to just
anybody. Your sister was a very special person. I'm sorry for
your loss and that you didn't get the chance to have her around
with you today. My sis and I do have a very special relationship.
As 3rd girl in the family and my sis being 9 years older, she
pretty much raised me in many ways. We've always had a special
bond that doesn't exist with our other two siblings. We all love
each other; it's just different.

I had to do the same thing with Angelman's Syndrome - look it up.
I had heard of it, but just in passing through as I researched
WAGR. One of the things I find interesting (strange word) about
these genetic syndromes is the overlapping of similar defects. My
niece's defect is the deletion of chromosome 11p13; however,
nearly 100% of our kids have a much larger deletion than 11p13
which is the element that makes each of them so unique. AS, from
what I've read, can be sporadic (which appears to be a recent
discovery); in 99% of WAGR kids, it is sporadic. The overlap I
noticed in both would be the hyperactivity, the ability to
understand, but not give back (wrong word again), the food issue.
Many of our kids must have their foods pureed due to the
swallowing/chewing issues; drooling (which "I" attribute to the
muscular atrophy of these kids from head to toe in those which
have that issue). If you can't keep your mouth closed, the drool
is going to flow. My niece is going through ph/th now trying to
improve the strength of those muscles.

As sad as you feel about WAGR kids, I get a similar reaction to
A/S. The majority of our kids eventually are able to converse; I
think the autism aspect in some of them is at the root of lack of
social conversation with them. With AS it appears there is a rare
chance that your child will be able to communicate with you. I do
wonder if the research had been available when your nephew was
diagnosed if his life might have been different. My sis had to
put Lori in MCV in Richmond, VA on the psyche ward soon after they
came here from CA. They kept her for two weeks; took her off all
"behavioral" meds and started over. She's been on Risperdal
since that time and it made a huge difference in whether she could
remain at home. There were times when my sis had to lock herself
away while Lori had severe mood issues; driving with her was
difficult as well. Had to look up the spelling on the med and
find out just now that it is the only drug approved for kids with
autism! No one knew my niece was autistic until about 3 months
ago; I suspected it, but no diagnosis. Too cool.

I can't imagine how you have dealt with losing your sister and her
family at the same time. My only comparison would be that of my
sister and niece; if God is good to us, he will take them both at
the same moment. That's what I feel now; surely can't predict
what I'd feel if it actually happened. When my sis has been
despondent at times, I've always felt if she became suicidal she
would take her life and Lori's as well because she'd never trust
anyone else to care for her - not even me - although I am listed
as guardian should something happen unexpectedly.

The tapestry of life, people who enter our lives that we are in
some way drawn to; I believe we cross each other's path for a
better understanding of our uniqueness, healing of past and
present pains, friendship of sorts if you're lucky. I don't
remember when I first found atc or why, but it's been much more
than true crime.

Glad to know you. If you ever feel the need to vent, as I so
often do, feel free to email me. The atc warden is definitely
ready to boot me off the ng :)

e/c annie


I am in awe of you two ladies - Choc and Annie.

I've been gone too long and don't know what else I've missed (I deleted
7500 posts unread!), but I'm so glad I didn't miss your posts.

Special Children! They are *so* much trouble, aren't they? Some of you
know that I have one; others don't know and won't understand what I'm
going to say.


But........

Choc - Martha's daughter might have thrived in the environment your
sister provided. From what I know about AS, vigilance is a reqirement,
but personal commitment, as your sister exhibited, is the growth
factor. Martha did not have that then; she may have it now, but I doubt
it.

Annie - I had never heard of WAGR until now. It sounds like a fickle
affliction in its manifestation. It is very heartening to know that the
children often develop conversation skills.

I share your fear regarding your sister's occasional
despondency; but when I try to imagine the alternative scenarios, none
look promising for Lori. That makes me feel very sad :-(


Ladies, thank you so very much for sharing.

I do have something more to say to parents/caretakers/guardians/etc. of
Special Children:

DO NOT EVER march down to your child's school and *demand* your child's
"right" to a public education. This is a perfect example of getting
what you pay for. If the school does not already have a suitable
program in place, MOVE ON! The absolute worst thing you can do for your
child is force someone to accommodate them; you want your child to be
in a place that caters to them.

Resources are avaiable; there *is* a local resource for your needs.
Make use of it; don't ruin your child's future by citing government
mandates. This is *your* child; take personal responsibility.

Back to Choc and Annie - In your families, I see that you have followed
my advice already, so I guess you know what I mean.

Again, thank you, ladies.....


Thanks Sharon. I did not know you had a special needs child.
It's a tough road. Especially 18-26 years ago when it was hard to get diagnoses. It seemed they just wanted to say he had mental and motor retardation and advised to institutionalize him, and that was about it. There wasn't much help back then, at least in South Dakota for kids like Wade. Especially if a mom wanted to keep him at home. You were pretty much on your own. We could definitely see the autism signs in him. It took a few years but she finally did get that diagnosis. But again, no help, no advice, nothing. Seriously.

I didn't have to follow that tough road, but my sister did. She wasn't a very big person (100 lbs soaking wet) but she hauled Wade everywhere on her hip until he learned to walk with the aid of leg braces when he was about 6 IIRC. He was tall but not chubby thank gawd.
Only somebody close to Wade could see his personality, his little grins, know his very own sign language, what to do when he had a seizure, what to do and know what he wanted when he screamed without crying.

He also had an older sister that was very attentive and loving and very protective to him. She also died in the car accident. It was my sister's hugest fear, in fact she would get all teary eyed just talking about what would happen to Wade should she die before him.

In E/C's case, Lori has a loving caring and involved aunt along with her mother, along with what sounds like a pretty neat support group. That's pretty cool. Not all disabled kids have that, evidenced by what started out this article of the torture of that pregnant disabled girl. Gawd that makes me sick and angry.

If Wade were still alive today, he would be 26. With the internet, and all the new diagnoses and support groups, it would have helped my sister tremendously.

This topic got waaaay OT, the net nannies are going to come out and tell us to get a room. lol

Chocolic

.

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