Listservice Response:
Per request by dharvey@...
	 "delete listsaver-of-angelman@... angelman-l"
'listsaver-of-angelman@...' was DELETED from the 'angelman-l' mailing
list.

Although you have been deleted from the list, some mail sent prior
to your deletion may be queued in the system.  Please don't panic if you
receive a few last pieces of mail.

Perhaps this is a question best answered by Dan Harvey.  What exactly is the
purpose of this list and who should be a part of it?  Is the list primarily a
"support group" for parents of AS children?  Should parents only of diagnosed
AS children be on this list?  Or is it also a place for parents/loved ones of
children with clinical diagnosis or no diagnosis at all, but are "AS-like"?
Are stepparents of AS children welcome as well as educators, aides, siblings,
grandparents, aunts, uncles, friends, etc?  Are these other loved ones as
equally entitled to a voice or opinion as those who have bio offspring with
diagnosed AS?

Is the list mostly a "support group"? Or is it more of a place for
information? Or perhaps it is an equal combination of both?

I am just very curious about the initial intent of the listserve.

D

Years ago the rep in Illinois had us all write letter to Oprah to try to get
on her show. They did get lots of letters but were told that there are so
many disabilities that they could not focus on one. But I think if we try
again, they will remember the last time we tried and maybe we can pester
them into a show!  Good idea!

Lisa Liesz
Schaumburg, Il (Erin 12 del+, Kelsey 9 & Sean 6)
-----Original Message-----
From: Kathydemo@... <Kathydemo@...>
To: angelman-l@... <angelman-l@...>
Date: Tuesday, June 13, 2000 10:02 AM
Subject: email Oprah


>Dear fellow listservs
>
>I had a really great idea recently and wanted to see what you all thought.
I
>am a huge fan of Oprah Winfrey even though I often miss her program because
>life keeps getting in the way. Anyway every time she talks about her angel
>network I think " I know a real angel and several more." Maybe I am going
out
>on a limb here but I think a lot of you may feel like I do and would like
to
>create angel awareness. That way other undiagnosed angels could be
>discovered. Also I don't find my son's syndrome embarrassing and I don't
mind
>talking about it but it is kind of hard to tell it all in the line to
someone
>in the grocery store why my child is laughing hysterically at nothing
really.
>I know a child with Downs syndrome when I see one and I know people wonder
>what is up with my child. I would wonder too. Most people wouldn't dream of
>asking even though I wouldn't mind. Wouldn't it be neat though if some
people
>just knew that they were seeing an angel. Oprah has such incredible
exposure.
>Everyone who feels as I do should e-mail her and tell her that we have real
>angels. She is always looking for change your life stories. We have all
been
>changed by our angels and there are many spiritual and positive changes
that
>go along with the more obvious difficult changes. If anyone thinks this is
a
>good idea, let me know. We could all bombard her on the same day. If we
don't
>get a response then we keep trying. Hope you don't think I'm crazy but
maybe
>some of us could show our beautiful angels to the world through an
inspiring
>medium.
>
>Kathleen

In a message dated 6/13/00 10:51:48 AM, Kathydemo@... writes:

<< I had a really great idea recently and wanted to see what you all thought.
I
am a huge fan of Oprah Winfrey even though I often miss her program because
life keeps getting in the way. Anyway every time she talks about her angel
network I think " I know a real angel and several more." Maybe I am going out
on a limb here but I think a lot of you may feel like I do and would like to
create angel awareness. That way other undiagnosed angels could be
discovered.  >>

I think it would be a great idea.

Bob and Debbie Witte
Matthew 6.9 atypical and Nathan 4.3
Jacksonville, FL soon to be Rochester, MN

Alison,
You've certainly described many of our exact same experiences.  Welcome
again.  You're in the right place:-)
Talk soon
Angela (Amber 4.3 quad non and Ryan 2.11, Boise, ID)
http://members.home.net/lindigs

I think the Oprah idea is a good opportunity.  It would give AS some
exposure, and possibly a dx for someone.  (Remember, my Mandy 9.6 del+ was
just diagnosed a few weeks ago only b/c I stumbled upon AS on the internet &
alerted her neuro).
It may also help others to not make wrong assupmptions based on ignorance.
Any knowledge of AS we could get out there would be a positive thing, and
Oprah certainly has a large audience.  I vote Yes!

Terry --mom to Mandy & 3 others and wife to Bruce

>>Actually, they don't even have to join our list.  All our posts are
archived
at Egroups.com...go have a look!  They're all there in black and white
for
the whole world to see.

Right, Angela????  LOL!<<

Beth

Actually, no, not anymore...since egroups became onelist, it's not being
archived anymore.  So, that's good to know, but actually, anyone at
anytime can access this list serv and certainly we should all be aware of
that when discussing such personal items.  I highly doubt that there are
people out there lurking to obtain "dirt" on parents of their students.
I welcome anyone to educate themselves about AS and all the emotions
attached to it.   I even welcome all the locals that I badmouth.  I would
never say anything behind someone's back that I wouldn't say to their
face...I just might never have the guts to say somethings to some
people's faces so this would be a great opportunity for them to hear how
one parent feels:-)  I'm certain that any professional that spent a few
weeks to even a month listening in would be filled with a new sense of
compassion, hope and they too would wish they had such an incredible
family of people to share their hardest times with.
Angela (Amber 4.3 quad non and Ryan 2.11 Boise, ID)

Welcome to the list.
Were you on the kbtoys bullentin board?  There is a '"tiredmommy" there too. 
Just wondering.
I have posted a little about my Jessica there.  Just wondered if I reached
anyone.  :)

This a great place to hang out.  You learn lots, cry lots, and laugh lots more!

Patti Jerome
Southaven, MS
Jessica del+ age 5.2
Patrick age 2.8

On Monday, June 12, 2000 4:20 PM, Ali [SMTP:tiredmommy@...] wrote:
> Hi,
> My name is Alison. My son Samuel is 2 and the doctors think he may have
> Angelmans. He has an older brother who is 7 and a younger sister who is
> 6 weeks old whom he just adores! Oh and I must not leave out his daddy
> who holds the key to his heart.
>

Hi All!
I stumbled across this on the HGTV (Home and Garden TV) Website-- I was just
looking for the plans for a home improvement project I've just started
on....by luck I found this!  I think you'll all find it very interesting.  If
you can't click on the link below (or if it is broken for some reason) you
can go to www.hgtv.com and click on the link entitled "Program Helps Mentally
Ill Buy Houses" -- it's right there on their homepage.

  <A
HREF="http://www.hgtv.com/library/BDRE/features/house_program/house_program1.h
tml">Program helps mentally ill buy houses</A>

Your friend,
Amy Urbanski
Mom to Mikala-8, Kylie-6 AS+, and Bailey-almost 2.
San Antonio, TX

Dear fellow listservs

I had a really great idea recently and wanted to see what you all thought. I
am a huge fan of Oprah Winfrey even though I often miss her program because
life keeps getting in the way. Anyway every time she talks about her angel
network I think " I know a real angel and several more." Maybe I am going out
on a limb here but I think a lot of you may feel like I do and would like to
create angel awareness. That way other undiagnosed angels could be
discovered. Also I don't find my son's syndrome embarrassing and I don't mind
talking about it but it is kind of hard to tell it all in the line to someone
in the grocery store why my child is laughing hysterically at nothing really.
I know a child with Downs syndrome when I see one and I know people wonder
what is up with my child. I would wonder too. Most people wouldn't dream of
asking even though I wouldn't mind. Wouldn't it be neat though if some people
just knew that they were seeing an angel. Oprah has such incredible exposure.
Everyone who feels as I do should e-mail her and tell her that we have real
angels. She is always looking for change your life stories. We have all been
changed by our angels and there are many spiritual and positive changes that
go along with the more obvious difficult changes. If anyone thinks this is a
good idea, let me know. We could all bombard her on the same day. If we don't
get a response then we keep trying. Hope you don't think I'm crazy but maybe
some of us could show our beautiful angels to the world through an inspiring
medium.

Kathleen

Hi to all the newcomers

I am fairly new myself. My name is Kathleen and I live in Vermont. I have a
soon to be 2 year old angel, Christopher Jon del+, (birthday 6/21) and three
other children, Andrew 15, Joey 13, and Erica 11. I am currently separated
from my husband Jon who is struggling with alcoholism and the likes. I live
temporarily with my parents where I am finally getting support that I need to
live with an angel. my three older children are with me every other week so
it's not always as crazy as it may seem. They are great kids anyway. Our
angel makes everyone happy. Christopher has many of the angelman traits like
developmental delay, seizures, laugh attacks(Marcs description of Liam's
laugh is right on GHEEEEEEE), terrible sleep habits and a great appetite. I
am thankful that Christopher doesn't seem to have gagging issues or stomach
problems and he doesn't drool, although I realize anything is subject to
change. This week Christopher is visiting his neurologist because he hasbeen
having more break through seizures and he seems to be a bit more irritable
lately. Got to run the kids to the last day of school but just wanted to
reintroduce myself and say how much I love this list.

Kathleen

KAYLEYWD@... writes:

<< Hey, did anyone
  out there think this was another of Tomi's screennames?  I did.  LOL... >>

You are sooooo baaad!! LOL, I do like her name....makes me want to go take a
nap!! Yawwwwn.......


Tomimommie to Madison Rose my angel 4.3 del-,
May the God of hope fill you with all joy and peace as you trust in him, so
that you may overflow with hope by the power of the HolySpirit.
Romans 15:13

Penny,  Thanks for the input.  It makes me feel so not alone and that there
actually are people who understand our situation.   This list has been a
Godsend.  We live in SE Wisconsin.  I would like to attend the PECS  workshop
in Oskosh in July.  Making it actually happen is another story.  I haven't
even had a date w/ my husband in years, much less be away for two days.  But
I'm now on a mission and determined as ever to gather as much info. as I can
to help Mandy.  I just may find a way to pull it off.   Bethany sounds much
like Mandy.  We once got to borrow a communication device from the school for
a summer.  It recorded several voice messages that could be played back when
she touched the pictures I created for it. ie: ("I want a drink,  ...to eat"
...go outside")  By the end of summer she would push the "drink" pic when
promted.  (She brings me a cup when she's thirsy and I would say "tell me
what you want on your talk board").  I guess this was viewed as too little
progress, but ya know, I wish we could have continued it.  PECS sounds like a
promising program for Mandy.  Thanks for the help

Terry, mom to Mandy and 3 others (I suppose I should start inc. my husbands
name too--it's Bruce :)

Before I say anything else I want to thank all of you for your wonderful
welcome!!!!!

This is probably going to be long so I will not be offened if you just
scan through it or delete it. I just don't know where to start or how to
amke it short.

Samuel was a preemie weighing in a 3 pounds 6 ounces and did wonderful.
He came home 4 weeks after his birth and had gained over a pound. The
only problems we had encountered then were reflux and apnea. He
continued to do well at home for about the first 4 months. We went
through everymed for reflux shortly there after with no relief.

We ended up putting an NG tube in when he was 9.5 months old because his
reflux had gotten worse and he would not take solids. At this age samuel
was still like a newborn and I was getting concerned. He only weighed 9
pounds,but after NG placement started gaining weight. :) They weaned him
off of the continuous feedings a month later and eventually off the
feeding tube by 11 months old.

At 11 months Samuel learned how to sit up. He was quite wobbly but with
a LOT of hard work on his part and ours he could finally do it.

At 12 months he was fiannly starting to eat finger food although he did
not chew well at all and would hold it in his mouth quite often.

At 13 months I was getting very worried that he could not do anything
but sit up. He did not babble,he couldn't hold things in his hands well
and he was still way below the 5th percentile in weight and height. Oh
and his head was always in the 15th -25th percentile for growth..which
we were always happy to see.

He finally learned how to crawl (in his own odd way) and could get
around our house fairly well.
I continued to fight with doctors and EI telling them that my darling
child needed some therapy in a bad way. I knew something was desperately
wrong. They all kept telling me the same thing they had been telling me
all along."He was a preemie; it will take him longer" Ok no I am not a
doctor or teacher or anything but I knew that this was not a "preemie"
thing.

At 18 months he still had not learned how to walk still did not talk and
drooled all the time. He was still mouthing everything and attempts at
straws and sippy cups were usless. He just couldn't do it. My husband
and I spent numerous hours helping him stand and take steps. We had been
doing this for months however for the longest time he would not put his
feet on the floor.

He always seemed happy. He always smiled and everyone thought he was the
happiest child they had ever seen. Even when he cried he would seem to
smile and crying always ended with a big smile. When he was frustrated
he would clap his hands and smile. He looked happy but we knew that he
was frustrated.

At 20 months old Samuel walked!!!!! He has his own fashion and esily
tires but he can do it. He falls all of the time and runs to
everything,but he gets back up and goes again. This is the age where
doctors started believing me that something is wrong. He has been
through so many developmental evaluations that it is pitiful.

Oh and somewhere around 18 months we suspected he was having some type
of seizures. We had an EEG done which showed no seizures. We then had a
48 hour digitrace EEG done which showed no seizures. He had an MRI done
that showed a mild abnormality. Oh and I do not like his neuro. We r
looking for a new one this oen seems to think that I don't need to know
what he finds.We are going back in about 2 weeks for another MRI and
another EEG. If they find nothing on the EEG this time they are going to
start him on depakote anyway to see if it helps these episodes he has.

Well he turned 2 on May 31. He weighs all of 22 pounds and eats me out
of house and home. He eats more than the rest of the family put together
:) He walks,he can sit up,he can now stack blocks (which is his favorite
thing to do). He can stack 5 now!!! He has no language skills really and
we have been attemtping sign which is something he cares nothing about.
Last week he finally leaned to point at something he wants. He is loving
and smiley and has enough energy for 20 kids. If ever we are having a
bad day Samuel is the one to cheer us up and give us that big smile. He
also LOVES to be the center of attention. With a lot of sensory
integration we have finally cut down on the drooling. Some days are
better than others. He still does't chew his food well and will let
something sit in his mouth for hours if you let him. He doesn't seem to
be able to spit things out. The mouthing has slowed down a bit but he
still loves to put all new things in his mouth. He has a favorite
balnket which he has just about chewed the corner off of and he loves to
suck his thumb when sleepy,upset or over stimulated.

Well I am sure I have left out a milion things that r important so if
you have any questions about him you would like to ask I will be happy
to answer them.

Oh testing: All they have done so far are a million dev. evals,some
endocrine,EEG's,MRI,and nutrition.

Oh and his head growth is now below the 5th percentile which really blew
my mind.

Alison (mom to Samuel 2,Brandon 7 and Faith 6 wks)

Jeanne,

Somehow I missed this post. Boy, I know the feeling. I am going to
be in the hospital in two weeks  again for my fourth heart cath and
angioplasty in less than a year. You are ritht, when I went into the
hospital my husband just dropped me off even though I was having a
heart attack! He had to take Bethany home and watch her.

Well, when all this started happening in 1999 I contacted my
daughter's
social worker and she finally sent out some help. Now mind you that
Bethany is 22 years old and we have never had any home help (do get
respite outside of home). She sent out the Angel to my angel. This
young woman is wonderful with her. I could not do without this young
woman at this time in my life.

You realize I got this help because I was sick. I had been receiving
choreservice. This is money on a monthly basis from the state after
your child is 18 years old. Because you, the parent are taking care of
an adult, who would be in a state group home, if there were any!

When my daughter's aid started coming the choreservice money started
going to her. I would rather have her than the money anytime!!!! My
husband and I are finally having somekind of life. Bethany is finally
responding to someone else in life besides her parents!

Unfortunately for this to happen I had to be so sick I could no longer
take care of my daughter.  Are you getting choreservice? Please look
into this. Do you have a caseworker for Jenn? Call social services.
Do you have a respite program? It sounds like you have never used
respite? Most states have some kind of respite programs. You should be
able to find this out through social services or association for
retarded
citizens or from the people at your daughter's school. Start using
these
programs if you can. You never know when you may need them, like if
your
husband or yourself become ill. It does happen, as I have found out.

Be sure and check out the program for choreservice, could be called
some-
thing else where you live (where is that, by the way?). This money
could help you pay for a babysitter to come into the house. Most
social
services programs have hours available for people to come to your
home.
There is a program here in Michigan called "Family & Neighborhood
Services".
They offer programs such as family friends. Someone you know can watch
Jenn and the program pays for it and you are allowed so many hours a
month.

Start inquiring from your daugher's principal about some of these
programs.
They should know about a lot of these agencies that can help you.
Isn't
it about time for your daughter to start the transition program
through
school since she is 18 and in most states the kids only go to school
til
age 21 (26 in Michigan)? Is there any kind of program for Jenn after
school is out? We have worked here where we live for quite a few years
to get an after exist program for the severly impaired kids. This took
a long time, and this program is now fully loaded with kids. But this
program only take 18 kids at a time. Well it isn't big enough to
incude
all the kids in the county that's for sure but we keep trying. My
daugher
is 22 and won't be out of school for 4 more years but is on the list
now!

You would think the school would provide you with a lot of this info
but
for some reason they don't until you ask for it! Start asking! Push,
Push,
Push!

Bethany does not walk and is still in diapers, too! Are you trying a
potty training program of any kind? We have been working with Bethany
a
while on this and she is really progressing (long haul though). She
goes
9 times outta 10 on the potty.

Most important is to call social services about any kind of
"choreservice"
program or reimbursement program  because Jenn is 18 and you are still
taking care of her. This money can be spent to help watch Jenn even if
you have to hire someone from an outside agency yourself. These places
are listed in the telephone book. They send out aids and also nurses.
An aid is less expensive than a nurse.

Also, have you applied to SSI for Jenn since she is now 18. You should
qualify for this hands down. She is an adult now and there should be
nothing in your way to stop that from happening. Do this though social
services. When she gets SSI she will also get Medicaid. It is
automatic!

Have you thought about applying for guardianship since Jenn is now 18?
We are Bethany's guardians. We are allowed to make all decisions for
her.

Well I've probably gone on too long, but if you need any more help I
would be glad to tell ya what I know. Which isn't nearly as much
knowledge
as Jackie Golden has in her little finger (that's a compliment
Jackie)!

  Penny & Bethany Exner 22 del+  (post more)
Allen Park, Michigan


MattcoInc@... wrote:
>
> I know I very seldom post, but I do read everything and I do send private
> responses. But I have a few questions for the parents of older angels. I am
> just totally overwhelmed and do not know what to do. Jenn will be 18 next
> month, she doesn't walk, she is in diapers, and is regressing it seems. We do
> have a home health aide a couple hours a day. But I am confined to my home
> when she is not at school and I am finding it all so very frustrating. I
> cannot get a baby-sitter in the evening or on weekends because no one wants
> to have to change Jenn's diaper. I asked for the hha's hours to be changed
> but it did not work out. I called the DMR worker and was basically told,
> there is nothing that they could do for us. So I mentioned, and I am sure you
> all will know this was the hardest thing, about a group home placement. It
> made me physically sick to even think about it. But I feel I have no
> alternative. The worker kind of snickered on that one and said, there are no
> group homes available and doubt there will be for years.
> Though Jenn does attend school and I can shop during the day, I cannot go out
> to dinner with my husband. We can't go to weddings and social events.
> In the mean time, we are just stuck with no where to turn. When my son needs
> to go to the hospital, only one of us can go. It is just becoming crazy!!!
> How do you all cope with this?? What else is there out there? Is there other
> programs that anyone knows about??
>
> Jeanne

Denise,

My thought could be absence seizures. My sister has them. She does
funny kinds of things before they come on, like holding her hands
to her head and gently rocking it back and forth, twirling her
hair, starts to move objects around the room.

Then sometimes she will pass out cold, like Hannah. This is scary
because they could hurt themselves when falling and you never
know when it will happen. I was walking behind my sister the first
time the passed out and I caught her,thank goodness because we were in
the garage and she would have gone down like a ton of bricks on the
garage floor!

MRI but how about an EEG? this should help with the dagnosis I would
think.

Penny & Bethany Exner 22 del+
Allen Park, MI
DENISE GRABOWSKI wrote:
>
> Hello everyone!
> Eric and I had a very interesting weekend.  It was great because we
> actually convinced the grandparents to take the kids for the weekend.
> Then yesterday we went to pick them up and we were there about an hour
> and Hannah stood right in the middle of the room and she collapsed. We
> ran to her side and she seemed to be in spaceland. Her body wasn't
> really moving and after a long minute of her not doing anything she
> finally started crying.  We checked her over very thoroughly and heard
> everything again from them about her weekend(sleeping, eating, drinking)
> to see what could be wrong.  We contacted the doctor's office(of course
> our doctor is having his yearly vacation). But the doctor on call has us
> set  up to have an EEG. Especially since she does not sleep
> well(sometimes shakes, rubs her head almost like she is having a
> headache, etc) and she could be having mild seizures. We have seen
> neurology before(MRI)  and have had three checkups already , but they
> told us we would know if they were seizures.  Any ideas about what this
> could be?  Seizures or not?  Thanks for any advice!!!
> P.S. At least I actually got out with Eric for once!!!
>
> Denise
> Mother of Hannah(quad non)

Canadian Penny, HELLO, from USA Penny,

I would like to know how you got the tape of Dr. Calculator's
presentation from Philadelphia last year.

Let me know, please.

Thanks, Penny USA
Bethany 22 del+
Allen Park, MI
pclipper@... wrote:
>
> Terry, I think some of the other listserve members will probably want to talk
> about inclusion, so I'll  skip that aspect.  Regarding communication, It takes
a
> long time, and I think I read once that all developmentally disabled kids go
into
> plateaus where years can go by and it doesn't seem like they've learned a lot.
> One thing we do know is that angels keep on developing for a long time, so
it's
> not as if they have to have accomplished everything by the time they are 17.
> Professionals that give up on a nine year old because she has 'peaked' need to
> know this.   Also, those who take a standard developmental approach, and
assume
> someone is functioning at the 18month level in all areas because they can't
stack
> blocks or because they lack a lot of expressive language is NOT a good bet as
a
> professional for your child.   It might help for your speech paths, etc. to
learn
> a bit more about angelman syndrome.  I think I did print out Robin Alvare's
study
> from the ASF home page to share with the school.  They need to be aware that
the
> level of comprehension can be quite high:  Ian has been able to sit through an
> entire movie and laugh at the right places for many years, but try to get him
to
> sign, and you'd think he was hardly there!  I have learned that words and
their
> equivalents are hard for him, but his ability to size up body language and
what is
> presented in front of him is very good, I think close to age appropriate.  I
> believe that Ian also has very good problemsolving skills when he is motivated
to
> try to accomplish something, and he has a sense of humour, which really
requires
> some higher cognitive processes.  He is just hampered from expressing these in
a
> wide range of ways, but it gets better!
>
> It takes many many repetitions to learn a few things, and for a lot of our
kids,
> signing is possible in a vague, approximate way for a few concepts that are
really
> important to the kids themselves (i.e. bath, more (as in food), bye (as in I
wish
> you'd go home so mom would pay more attention to me), rain (because I love
it!).
> Ian knows there is a sign for 'dog,' and sometimes does something like'bath'
or
> 'please' (I don't know how they ever taught him that one!) a bit lower down on
his
> body, but he has never ever been able to do it for some reason.  He knows
there is
> a sign for it and what signs are, but somehow learning and retaining them is
very
> difficult.  I do not believe that this is an indication of his actual
> 'intelligence,' but of one or two particular learning difficulties that he has
> which are specific and not across the board so far as his abilities go.
>
> I do make a point of talking to him with the assumption that he understands,
> particularly when we are talking about what is concrete and here and now, and
it
> may have been wishful thinking way back when, but he does understand a lot
now.
>
> We are working with picture symbols, but it takes a long long time for him to
> learn a new one well enough to differentiate.  I have seen Ian progress from
using
> switch toys (of the Radio Shack variety) to pushing a Big Mac to say 'good
> morning' and a few other things, and I think that this can be a good direction
to
> take, with the ultimate hope that they can use an electronic talker to get
some
> messages across  (Ian points quite well, so this was a strength that could be
> worked on).  .  Many angels won't learn to sign well enough for anyone but 
family
> and close intimates to recognise what they are saying, and this isn't
necessarily
> because they are not 'trainable,' but because a lot of them have fine motor
> difficulties and some other blocks for that kind of comprehension and motor
> memory, but there is lots of communication work that can be done.
>
> Dr. Calculator has received a grant from the Angelman Foundation to do some
work
> on something that he calls "Enhanced Natural Gestures," which I think has good
> potential for angel communication.  He made a presentation on this at the
> Philadelphia conference last year, and I ordered the audio tape of it.  I
thought
> it was quite inspiring, as was his other presentation on Augmentative
> Communication.
>
> You know, I think you might need the inspiration of a conference!  I'm not
sure
> where you are, but have you considered coming to Vancouver this August? They
often
> provide inspiration.
>
> Hope this helps,
>
> Penny (Ian 13.4 UPD) Calgary Canada
>
>
>
> Schnsr1@... wrote:
>
> >   ------------------------------------------------------------
> >
> > Subject: level of cog. functioning
> > Date: Mon, 12 Jun 2000 09:33:50 EDT
> > From: Schnsr1@...
> > To: angel-l@...
> >
> > I know I shouldn't get into the habit of comparing my child to others, but
> > since the short time I've been a part of this list, I'm feeling like so many
> > of you are having successes that we are not.   Mandy (9.6 del+) was just dx
> > only weeks ago.  Thanks to the internet, no thanks to any of the
professionals
> >  in her life.
> >
> > Most of Mandy's cognitive functioning is in the 12-18mo. range.   She's
never
> > said a word.  She doesn't sign, and we've had no success w/ pictures ( she'd
> > rather crunch them up or chew on them) although she loves looking at pics of
> > family members and toys.   Her PT, OT and speech therapists have all
> > discharged her long ago saying basically  there was no more they could
> > do---she had "peaked" in all areas.  Maybe if we had a dx long ago, we would
> > have been able to serve her better.??   She is in a CD class at school
(6hrs.
> > 5 days per wk.) They go to music and gym w/ the Kindergarten and attend
> > special all school things.  There are only 5-6 kids in the class w/ a
teacher
> > and an assistant.   She loves school and has learned so much as far as
> > following routine, paying attention for longer periods, and becoming a
social
> > being.   Sometimes though, the school day seems too long and tiring for her.
> > She certainly is not getting anything out of studying the"letter, number
> > color... of the week".    I believe tthere have been a lot of positives that
> > have come out of this school setting, but I don't have anything to compare
it
> > to.  A reg. ed. class for any period of time is out of the question.  I
> > couldn't even imagine Mandy sitting in a desk (w/out being tied in to keep
> > her there :) ).   Mandy basically needs one-to-one supervision at all times.
> > At her last IEP, when at the end it was stated rather routinely that "Mandy
> > would attend the CD class 5Xper week...  I asked, is there another choice?
> > Everyone there looked dumbfounded and didn't know what to say.   I feel
Mandy
> > would better to be in school maybe 3 mornings a week and have some type of
in
> > home therapy 3X a week for a couple of hours.  Will Medicaid pay for such
> > therapy?  Does it exist?   Thanks to anyone who has taken the time to read
> > this long writing.   Any comments?   Maybe I,m just having one of those
feelin
> > g like I'm doing it all wrong days.
> > Terry,  mom to Mandy and 3 more
>
>

WOW!!! He can rope be in anytime!! What a cutie!

WELCOME!!

Penny & Bethany 22 del+
Allen Park, MI


> traci woodall wrote:
>
> Note: forwarded message attached.
> This my Angel cody, hope you don't mind me sending
> this.
> Traci, mom of cody(3)
> Texas
>
> __________________________________________________
> Do You Yahoo!?
> Yahoo! Photos -- now, 100 FREE prints!
> http://photos.yahoo.com
>
>    --------------------------------------------------------------
>
> Subject: A:\IMAGES\9CAJ1621.JPG
> Date: Fri, 10 Dec 1999 22:55:50 -0600
> From: "sloane mccain" <smccain@...>
> To: "traci woodall" <traci75110@...>
>
>
>
> A:\IMAGES\9CAJ1621.JPG
>
>                    Name: 9CAJ1621.JPG
>    9CAJ1621.JPG    Type: JPEG Image (image/jpeg)
>                Encoding: base64

Our extended school program is Monday through Thursday from 9am to
1pm. No school on any Fridays.

Also, these kids will be out for about 10 to 15 total days during
the summer before school starts back in late  August.

Bethany has never had to qualify for ESY. The dog gone program
goes all summer, regardless of how many kids attend. Heck her
entire school attends, unless the parents just don't want them too!

This kid is a pain when she is home on any kind of extended vacation.
Her routine gets totally off and she gets BORED!  Her sleep also
gets screwed up, as if it's not bad enough already.

Besides that, why don't our kids go to school all year long? We do
so awful compared to some other parts of the world. Let's face it,
there aren't that many farmers where the kids gotta stay home and
work the fields. The original idea behind the summer vacation. But
wait, it is probably the "teachers" who really want summer vacation.
Gosh, I think my husband would like to be home for 3 months, to say
nothing about all the downtime during the year for holidays. I
think school for 9 months a year is an archaic idea. We do have
some communities who "school" all year, but actually have little
minnie vacations throughout the year, a couple weeks here and there.

Sorry, I guess I went off on a tangent. What the heck, my asthma was
so bad this past weekend I ended up in the hospital and now I am on
prednisone and I am awake all night since Saturday. This stuff has
really hyped me up. Yuck! But I am cranking out some emails this AM!
Sorry if I sound like a lame brain!!

Penny & Bethany Exner 22 del+ (in respite and I'm up!)
Allen Park, MI
KAYLEYWD@... wrote:
>
> In a message dated 06/12/2000 11:53:48 PM Eastern Daylight Time,
> ronylu@... writes:
>
> << we also have automatic ESY here.  they send a form that you fill out if you
>  want it.  there's been a lot of talk about the 4 weeks we get not being
>  enough.  that it's a violation of the IDEA. >>
>
> I agree that four weeks isn't enough.  That's all we get here in Maryland
> too.  Kayla still has 6 weeks of summer where she's getting nothing.
>
> Beth
> Kayla 4.10
> Maryland

Terry,

Whoaaaa now don't get me started!!!!! Don't listen to NEGATIVE TALK
from all these people who should know better.  The real problem is
that most "professionals" don't know much about kids who have AS
or may have AS.

My daughter Bethany is 22 years old and is only now making some of
the best progress of her life. She too was "written off" years ago
because of lack of diagnosis. Retarded and cerebral palsy were her
catch words. Nothing much to work with here was the resounding
chorus!  DON'T BELIEVE IT !!!!!!!!! NOT EVEN FOR A MINUTE !!!!!

Gosh, Mandy is young. First thing you need to do is get her going
with the (PECS) picture exchange system. She is very interested in
photos of the family and toys. This is your in. Just spoke with the
speech therapist this past week. She kept saying  that you've got to
have an "in" with the kids. Bethany also likes pictures of the
family and her toys and her favorite things to do. There is plenty of
info on the internet and through previous emails regarding the PECS
system. Find out as much as you can and then let the "professionals"
at the school know about it, if they don't already. This is good
for Mandy, it can "rock her world"!

There are lots of kids on the list who are pretty fast movers with
PECS and signing. Bethany is not FAST (except when it comes to
crawling).
These pictures have taken a long time to get going with her. However,
now
she is making choices and also giving the icons back to the exchange
partner (mom,dad) also to her Nanny and babysitter. She is also
starting
to use her Big Mac's. Especially the one that says "Kit Kat Candy Bar
please". She has done this two nights in a row now, all by herself,
YES,
she was the one initiating this thought! She found the yellow big mac
on the floor,pushed the button and I responded, (I waited for the big
mac to be activated twice so I knew it was real on her part and not an
accident. Her speech teacher has been working with her for about 6
months
now and it is carried out throughout her school day and at home. This
is so much fun for our lovely Bethany to be able to convey her own
thoughts!

She also knows the sign for drink and food. She can't really do it
herself,
But if I make the sign and say the word she understands it.

DO NOT LET ANYONE WRITE YOUR DAUGHTER MANDY "off".

Somehow you need to laminate the photos (keeps the kids from crunching
on
them and bending them all to heck). Laminators are not that expensive.
Perhaps even the school has one and you can use it or someone else you
know
or from work, etc. We had a guy from my husband's job who laminated
Bethany's.
Now we have a laminator, thanks to our local AS group! Also, if you
have a
video camera with digital this works great for making the photos! If
this
is not available use regular laminating sheets. They can still be
slightly
crunched by the kids, but better than nothing.

There is no way that Mandy has peaked in all areas at ony 9 years old.
The
"professionals" have "pooped out" me thinks.!!! There is so much more
for
your daughter to learn, don't give up! Keep her in school, everyday if
possible!

Get your ducks in a row and then call another IEP.You can call your
own,
just in case you didn't know. You don't have to wait for the "egg
heads"
to call one once a year.

Don't leave this list. There is a wealth of information here and I
swear
you can't get it any place else. I know we can all get going
sometimes,
but all in all I think we are a great group of people! We really want
to
help each other.

By the way I had been gathering info about the PECS system for almost
a year from this listserve and from the internet before I really
approached
the school system about it. Don't wait this long!! Tell them you know
about it(gather info to give them). TELL THEM TO START THIS PROGRAM
WITH
"MANDY", NOW!!! This could be a long process with her and then again
maybe
not, our kids can fool us sometimes!

Hey, don't feel too bad about having a bad day, I could make a million
bucks
by selling all my "bad days", but I don't think I'd have any takers!
hahaha!

If ya need to talk again, let's do.

Penny & Bethany Exner 22 del+ (where do you live?)
Allen Park, MI

Schnsr1@... wrote:
>
>   ----------------------------------------------------------------------
>
> Subject: level of cog. functioning
> Date: Mon, 12 Jun 2000 09:33:50 EDT
> From: Schnsr1@...
> To: angel-l@...
>
> I know I shouldn't get into the habit of comparing my child to others, but
> since the short time I've been a part of this list, I'm feeling like so many
> of you are having successes that we are not.   Mandy (9.6 del+) was just dx
> only weeks ago.  Thanks to the internet, no thanks to any of the professionals
>  in her life.
>
> Most of Mandy's cognitive functioning is in the 12-18mo. range.   She's never
> said a word.  She doesn't sign, and we've had no success w/ pictures ( she'd
> rather crunch them up or chew on them) although she loves looking at pics of
> family members and toys.   Her PT, OT and speech therapists have all
> discharged her long ago saying basically  there was no more they could
> do---she had "peaked" in all areas.  Maybe if we had a dx long ago, we would
> have been able to serve her better.??   She is in a CD class at school (6hrs.
> 5 days per wk.) They go to music and gym w/ the Kindergarten and attend
> special all school things.  There are only 5-6 kids in the class w/ a teacher
> and an assistant.   She loves school and has learned so much as far as
> following routine, paying attention for longer periods, and becoming a social
> being.   Sometimes though, the school day seems too long and tiring for her.
> She certainly is not getting anything out of studying the"letter, number
> color... of the week".    I believe tthere have been a lot of positives that
> have come out of this school setting, but I don't have anything to compare it
> to.  A reg. ed. class for any period of time is out of the question.  I
> couldn't even imagine Mandy sitting in a desk (w/out being tied in to keep
> her there :) ).   Mandy basically needs one-to-one supervision at all times.
> At her last IEP, when at the end it was stated rather routinely that "Mandy
> would attend the CD class 5Xper week...  I asked, is there another choice?
> Everyone there looked dumbfounded and didn't know what to say.   I feel Mandy
> would better to be in school maybe 3 mornings a week and have some type of in
> home therapy 3X a week for a couple of hours.  Will Medicaid pay for such
> therapy?  Does it exist?   Thanks to anyone who has taken the time to read
> this long writing.   Any comments?   Maybe I,m just having one of those feelin
> g like I'm doing it all wrong days.
> Terry,  mom to Mandy and 3 more

:Yippie!!!!!!!!!!!!!Congratulations to all !!!




Penny & Bethany 22 del+
Allen Park, MI
Morrisnose@... wrote:
>
> Hi all,
>     Well, I just want to thank everyone for your thoughts and prayers; they
> paid off!!  Brandon James Decker arrived at 10:07am, weighing 8lbs 13.6oz,
> measuring 20in long.  Mother and baby are doing great...our Angel was on her
> way to meet her brother as of this writing.  I want to thank you all again,
> it is always nice to know people care.
>
> Teresa Upstate NY
> Aunt to Stephanie 3.5del+and Brandon 7hours!!!

Well, as someone who's been online over twenty years and working in it
professionally for almost a decade, I would tell you the same thing about
internet security that I tell all my clients:

If it's something you really, REALLY don't want publically known, don't
send it over the net, period. No exceptions, 'buts' or 'I use encryption
software' excuses, either :)

You will be much further ahead if you simply assume that everything you
have *ever* sent online is archived somewhere. (because it is). Computers
are wonderful things, that way: Storage capacities are literally beyond the
capability of the average human mind to even comprehend, and getting
cheaper and cheaper all the time. Therefore, it's easy to save a record of
everything. The data is amazingly valuable, no matter what the content.

This year has seen a lot of my clients ask me to do a lot more data
analysis, in addition to the normal data gathering (via email and web).
Some of the data is pretty innocent. For example, if I had the time (and I
don't :) I could simply take all the emails that have come through this
list, strip everything but the message headers away from them to give me a
massive list of email addresses and headers. From that list, you can easily
parse those to find exactly how many of you are using:

a web-based email client
webtv access
free internet access or paid
geographic location of all addresses (down to city)
what email client you are using (Eudora, Outlook, etc)
probable ethnic origin of the sender (based on family name)

and a few other things I can't remember at 2:00 am.

What can you do with this data? It depends who is going to use it. If it
were the Angelman's Foundation, it could be used
*To get a more accurate idea of who's using what type of software and where.
*You can also get a general idea of the level of internet expertise the
user has [for example, the *general trend* (Emphasized, because this is
generalized across North America and not meant to insult anyone] more
advanced users tend to avoid ISP's like AOL, WebTv, Earthlink, etc)
*by knowing who'd using HTML-capable mailers, it could allow them to send
out more customized newsletters.
*They could personalize mailers per user (assuming they kept a databse with
all the specifics). Ex. In the next mailer that was mass-mailed to all of
us, what I see could be specific to parents of infant angels, but the next
person would see a version specific to teen angels, or a researcher could
see the entire mail as it applies to all angels, or even just as it applies
to geneticists)

There's a *lot* more you can do with the data. Obviously, some of it can be
quite bad, but if you're sending mail to this list, chances are you've done
other things online at least once, as well, which identifies you to the
world.

In this heavily computerized age, there really isn't a whole lot about
anyone that isn't available somehow, somewhere, via the internet. If
someone really, really REALLY wants that information, they're going to get
it. Period. (Not to mention the tons of off-line methods, as well)

Heck, you never know, we might see some of the *good* uses of this data
soon. I'm well on my way to learning databse manipulation and programming
(in addition to being an advanced Perl programmer) and have offered my
services free of charge to the Canadian Angelman's foundation.

For what it's worth, I like to think I live by an elevated ethical code.
I've never used any data that I think the owner of (i.e. the person the
data describes) didn't intend. I've turned down many clients that I knew
were into spamming from ill-begotten email lists. All of my coding projects
have had methods to remove people or their information from the records.

Data gathering is a GOOD thing :) Imagine where we'd be without the
*massive* amount of data, trends, reports, guesses, theories, etc, about
genetic disorders, today?

At 12:48 AM 6/13/00 EDT, KAYLEYWD@... wrote:

>YOu know, I was a little disturbed when I found out that all our emails are
>archived in Egroups.  I don't really think they should be and this is a
>perfect example of why.  I would really HATE for Kayla's teacher to read
some
>of the things I wrote about her.  Now, granted, they are true things, but it
>could make my life *hell* if she read them!  Well, she's leaving anyway, so
>it won't matter, but still...I don't think it's right.
>
>Dan, do we have any control over that??  Does anyone else feel the way I do
>about this?
>

----------------------------

Marc Bissonnette
InternAlysis
Intelligence In Internet Communications
http://www.internalysis.com

At 01:23 AM 6/13/00 EDT, FLEETQUEEN767@... wrote:
>Woops! I just slipped and fell off my soap box! :-)

Aww, heck, I got so tired (and bruised) from falling off my soap-box with
Liam's doctors and caregivers that I just went out and got a couple of
laundry-detergent boxes and use em as elevator shoes. Now, I never fall off
the soap-box (though I may get a little wobbly now and then)

:-)
----------------------------

Marc Bissonnette
InternAlysis
Intelligence In Internet Communications
http://www.internalysis.com

With the rather pleasant influx of new families to our own international
family, I was thinking it may be a good idea for some of the regulars to
re-introduce themselves and their angels every now and then.

I'll start :) :) :)

My name is Marc Bissonnette, living here in Toronto, Ontario, Canada.

I've been blessed, touched and drooled on by my angel Liam, 22 months old,
who was diagnosed approximately eight months ago as having a definite
deletion on chromo 15.

Liam has a three year old sister that he absolutely *adores* and tends to
blind the room with his smile when she comes near him.

Developmentally, Liam is approximately at the six month stage for gross
motor skills and nine months for fine motor.

He's had a GJ tube since diagnosis, which was recently pulled back to a
G-tube (Almost out, little guy, keep practicing drinking from a sippy-cup!)

Liam has taught me more about myself, the handicapped and how others react
to them than I could ever sum up in a single email. Would I change a single
thing about being blessed by an angel? Not on your life!

There's rough times (really, really, REALLY rough times, some times), but
at the end of the day, when I put him in his crib and get him set up on the
pump, that smile and laugh (he laughs like "GHEEEEEEEEEEEEEE GHEEEEEEEEEEE
GHEEEEEEEEE" makes it all worth it :)

I've also met, through this list, some people that I can only hope to be as
good a human being as they have so far achieved, in my life time.

To all the new people: Welcome! (Actually, a big Canadian Welcome, since I
try to sneak Canadian references in, wherever I can, as I'm sure some will
attest :)
----------------------------

Marc Bissonnette
InternAlysis
Intelligence In Internet Communications
http://www.internalysis.com

Kayla brought home a revised edition of the Principles Notes today.  It seems
there was an additional page that was not xeroxed on the back or something.
Anyway, this page stated that <name deleted for anonymity (LOL)> would be
leaving us to pursue interests in other areas!  Hmmm...then she told me today
that she wanted to work for a school that was a little more flexible.  HA! I
got a real kick out of that.  She said she's looking for a position where she
could work like 10 to 5 or something like that.  DO you guys know of any
school that starts at 10 and ends at 5??

What it says about the new teacher is  "...<name deleted> has an M.Ed. plus
55 credits and will be completing 9 credits in early childhood within the
next year.  She has worked in special education, Pre-K's, and with the blind
and visually impaired."  That is all it says.  It's at least more experience
than the other teacher.  I'm excited.

Thanks for all your comments and helpful advice.

Beth
Kayla 4.10
maryland

Dear AS friends,

I certainly hope teachers are monitoring our listserv!  It would be great for
them to see in black and white all the cool things our AS kids are capable of
doing these days!  I for one am tired of telling them over and over what my
kid can do - and when she finally does it in front of them, the educators all
act surprised!  Let them come and see the love and concern for our families
and our
relationships of encouragement we are building with one another here on the
AS listserv!

Woops! I just slipped and fell off my soap box! :-)

P.S. I'm an AS mom and a certified teacher - Does this make me a spy? :-)
Just wondering!

Jeannie Adam
Denver CO
Mom to Mel AS UPD and Kimmy super sis 10!

In a message dated 06/12/2000 11:53:48 PM Eastern Daylight Time,
ronylu@... writes:

<< we also have automatic ESY here.  they send a form that you fill out if you
  want it.  there's been a lot of talk about the 4 weeks we get not being
  enough.  that it's a violation of the IDEA. >>

I agree that four weeks isn't enough.  That's all we get here in Maryland
too.  Kayla still has 6 weeks of summer where she's getting nothing.

Beth
Kayla 4.10
Maryland

In a message dated 06/12/2000 11:28:47 PM Eastern Daylight Time,
ESTEE687@... writes:

<< << I think everyone needs to be real careful what they put on the listserv
  now.
   If you have complaints about school issues email in private. Thanks for
   letting everyone know about this.
    >>

  I would imagine we could STILL complian...lol, but it would probably be wise
  to omit names of staff members.
   >>
I agree with that.  Whoever could I complain to about teachers if not this
list?  Over half the parents on this list have angels older than mine, so
they have been there!  You guys never heard me mention Candace Strickland,
okay?????

Beth

In a message dated 06/12/2000 7:45:32 PM Eastern Daylight Time,
samandpatty@... writes:

<< I was just asked how a school system would monitor our post or access
  our archives.  I would assume that they would subscribe to the list just as
  we had.  I know that our system has done this as in records that we got from
  the system today in preperation for Due Process I found letters from our
  archives. >>

Actually, they don't even have to join our list.  All our posts are archived
at Egroups.com...go have a look!  They're all there in black and white for
the whole world to see.

Right, Angela????  LOL!

Beth

In a message dated 06/12/2000 7:00:23 PM Eastern Daylight Time,
samandpatty@... writes:

<< I don't know if this is information that would be of help to anyone.
  However I think that the list should be aware that it has come to my
  attention that school systems are monitoring our listserve and accessing our
  archives.  This may would be a problem for those of us that are in Due
  Process procedings against our schools.  It may also be helpfull if they are
  doing it to help our children and not to fight us.  Just thought you should
  know. >>

YOu know, I was a little disturbed when I found out that all our emails are
archived in Egroups.  I don't really think they should be and this is a
perfect example of why.  I would really HATE for Kayla's teacher to read some
of the things I wrote about her.  Now, granted, they are true things, but it
could make my life *hell* if she read them!  Well, she's leaving anyway, so
it won't matter, but still...I don't think it's right.

Dan, do we have any control over that??  Does anyone else feel the way I do
about this?

Beth
Kayla's mom