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Too Many Hops

Angelman-l Digest           Sun,  1 Aug 99       Volume 99 : Issue  209

Today's Topics:
                            Angel's breath?
                     Angels vocalization  (2 msgs)
                          Angel Vocalizations
                            Conference info
                   Convaid stroller--part 2 (3 msgs)
                 Dr. Laura Advises Mom to get a sitter*
                       Dr Laura's Advice (2 msgs)
                          Dr Laura/Conference
              Fwd: Dr. Laura Advises Mom to get a sitter*
                            Lactulose syrup
                            M.O.M. (4 msgs)
                          pictures on the list
                 Re: Interesting finding on Risperadol
                                Scary...
                       Scott Wilcox where are you
                        Two Story Homes (3 msgs)
                          video of conference

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For information about Angelman Syndrome, see:
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Loop-Detect: Angelman-l:99/209
----------------------------------------------------------------------

Date: Sat, 31 Jul 1999 12:04:37 EDT
From: TDixon999@...
Subject: Angel's breath?

We have noticed that when Patrick is dehydrated.  That occurs when he
gets
sick and will not eat or drink anything for several days.  Then it is
time
for 2-3 days in the hospital getting re-hydrated.

Chris, Tom, Kelly, Thomas, Patrick (7.5 del +)

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

Date: Sat, 31 Jul 1999 20:21:43 EDT
From: TESSABUG@...
Subject: Angels vocalization

This Friday I had the opportunity of spending 1 1/2 hr with as very good

speech pathologist . While we were visiting Tessa was "requesting" my
help to
turn on the tape player . What I mean by "requesting" is , not only did
she
take my hand and try to get me to turn it on she also "vocalized" her
request
( open mouth vowel like sounds ) She also did the same thing when she
wanted
me to open the container on the puzzle book , took my hand guided it to
the
container and vocalizing all the time
( once I showed her how to open it she was able to open the other
containers
on her own , even if the latch wasn't facing her she would just try
every
side till she found the side that opened ) She is frequently vocal in
her
attempt at communication , so what I was wanting to know is ....do most
Angels vocalize like she does ? or are they usually silent ? she can be
very
quiet but like I said she can also be very vocal , sometimes a bit to
vocal ,
such as when she wants HER way   :-)      Of course the pathologist had
never
heard of AS and she was very impressed with Tessa comprehension . Tessa
didn't "show off" as much as she can but she did pretty good

Teresa , mom of tornado Tessa

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

Date: Sun, 1 Aug 1999 01:53:08 -0400
From: "Craig and Beth" <neal33@...>
Subject: Angels vocalization

Zachery is also vocal when he wants something or something is wrong.
When
you talk to him he really tries hard to talk back.  No words, but
different
vocalizations.  If you say..."Oh, poor Zach or poor baby", he uses the
"Oh,
woe is me" vocalization. (My Mom and Dad taught him this when he was a
baby!):-)  If you say.."Yeah Zach!  What a good job you are doing
standing!"
He uses the"I am the man!" (excited) vocalization.  When people come to
visit, which in his eyes is just to see him :-), he uses the "squealing"
vocalization.  Or if you say "Zach tell me a story" he will use his
"long,
drawn out drolling" vocalization, like he is telling you all about it.
This
is the best that I can explain it.

Beth, Mom to Zach-8(del+).....WV
----- Original Message -----
From: <TESSABUG@...>
To: <angelman-l@...>
Sent: Saturday, July 31, 1999 8:21 PM
Subject: Angels vocalization


> This Friday I had the opportunity of spending 1 1/2 hr with as very
good
> speech pathologist . While we were visiting Tessa was "requesting" my
help
to
> turn on the tape player . What I mean by "requesting" is , not only
did
she
> take my hand and try to get me to turn it on she also "vocalized" her
request
> ( open mouth vowel like sounds ) She also did the same thing when she
wanted
> me to open the container on the puzzle book , took my hand guided it
to
the
> container and vocalizing all the time
> ( once I showed her how to open it she was able to open the other
containers
> on her own , even if the latch wasn't facing her she would just try
every
> side till she found the side that opened ) She is frequently vocal in
her
> attempt at communication , so what I was wanting to know is ....do
most
> Angels vocalize like she does ? or are they usually silent ? she can
be
very
> quiet but like I said she can also be very vocal , sometimes a bit to
vocal ,
> such as when she wants HER way   :-)      Of course the pathologist
had
never
> heard of AS and she was very impressed with Tessa comprehension .
Tessa
> didn't "show off" as much as she can but she did pretty good
>
> Teresa , mom of tornado Tessa

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

Date: Sat, 31 Jul 1999 23:05:46 -0500
From: Ann Charambura <acharamb@...>
Subject: Angel Vocalizations

Hi,

Rowan also grunts ("uh") or says "ah" sounds when she wants something or
is
trying to get our attention. No words.

Ann, Rowan 4 Winnipeg, Canada

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

Date: Sat, 31 Jul 1999 18:31:48 -0400
From: "ROBERT GROVE" <bobee@...>
Subject: Conference info

Hi guys..coming out of lurk mode again here..We're getting really
excited
about the upcoming conference and my only worry is Alecia's sister, Kim.
I
am hoping she will get to meet some older siblings of angels..teenage,
she's
15..to talk with and kind of hang out with.She thinks she's going to be
the
only one there and what will she do all day and alone. My question is
are
any of you bringing siblings with you...better yet, teenage ones.And are
there any sibling workshops planned...I really didn't see anything in
the
conference info and assume she will go with Alecia and our friend/
respite
provider to the children's activities which sound great, it's one of
those
adolescent things you know..........
thanks
Sandy
Mom to Alecia 13 AS+- and Kimberly 15
Falling Waters, WV

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

Date: Sat, 31 Jul 1999 11:59:36 EDT
From: TDixon999@...
Subject: Convaid stroller--part 2

We purchased a convaid stroller about 4 years ago directly from convaid
at
their torrance factory, they were expensive then, I can only imagine
what
they run now.  They do not know what "Customer Servicve" is.  We went
through
4 foot plates before I had a friend of mine make them out of metal.
Also,
Patrick, when he gets excited, lunges forward and has pulled the
shoulder
harness fasteners  through the netting material, not once but at every
position.  Nothing that was damaged was replaced under their "Limited
Life-Time Warranty", YOUR CHILD IS DESTRUCTIVE, WHAT HE NEEDS IS A
TANK!!!!.

Chris recently called them and spoke to their machine, but we did
receive
their current catalog, but they do not list prices.

I'm out of town next week with our other son, going to Boy Scout camp,
but
the following week we are going to their Torrance factory with the piece
of
junk in hand.

They have a new, or at least new to us, stroller where the back reclines
from
the standard 5% all the way to 45% so when the user falls asleep you can
let them recline rather than try to sleep with their head leaning
forward.
which looks so uncomfortable.

Good luck.

Tom, Chirs, Kelly, Thomas, and Patrick (7.5 del +)
Long Beach, CA, and Bifgork,MT.

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

Date: Sat, 31 Jul 1999 17:23:06 -0400
From: "Craig and Beth" <neal33@...>
Subject: Convaid stroller--part 2

WOW!  You mean to say that your Angel would actually "Fall Asleep" while
going somewhere in his stroller!!!  Zach would never do that, he is way
to
nosey!  He would be afraid that he would miss something!!! he! he!

Beth, Mom to Zach-8(del+).....WV
----- Original Message -----
From: <TDixon999@...>
To: <pschwent@...>; <angelman-l@...>
Sent: Saturday, July 31, 1999 11:59 AM
Subject: Re: Convaid stroller--part 2


> We purchased a convaid stroller about 4 years ago directly from
convaid at
> their torrance factory, they were expensive then, I can only imagine
what
> they run now.  They do not know what "Customer Servicve" is.  We went
through
> 4 foot plates before I had a friend of mine make them out of metal.
Also,
> Patrick, when he gets excited, lunges forward and has pulled the
shoulder
> harness fasteners  through the netting material, not once but at every
> position.  Nothing that was damaged was replaced under their "Limited
> Life-Time Warranty", YOUR CHILD IS DESTRUCTIVE, WHAT HE NEEDS IS A
TANK!!!!.
>
> Chris recently called them and spoke to their machine, but we did
receive
> their current catalog, but they do not list prices.
>
> I'm out of town next week with our other son, going to Boy Scout camp,
but
> the following week we are going to their Torrance factory with the
piece
of
> junk in hand.
>
> They have a new, or at least new to us, stroller where the back
reclines
from
> the standard 5% all the way to 45% so when the user falls asleep you
can
> let them recline rather than try to sleep with their head leaning
forward.
> which looks so uncomfortable.
>
> Good luck.
>
> Tom, Chirs, Kelly, Thomas, and Patrick (7.5 del +)
> Long Beach, CA, and Bifgork,MT.

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

Date: Sat, 31 Jul 1999 16:38:13 -0500
From: Dale & Penny Schwent <pschwent@...>
Subject: Convaid stroller--part 2

How in the world did you get one direct?  They would barely deal with
me.
Emily also loves to lunge forward and I'm hoping the more expensive
upholstery
will help prevent the harness fasteners from tearing out.  We only have
one
row left intact right now and it's already showing wear.
I did see the Convaid Safari that reclines and it looks really nice (as
long
as it's made to hold up to Angel activities)  I haven't gotten the new
upholstery yet but if it works I would check into the heavy-duty seat
upholstery when you're looking to buy or repair.

Penny
Emily's mom (6.11, del+)
Schaumburg, IL

TDixon999@... wrote:
>
> We purchased a convaid stroller about 4 years ago directly from
convaid at
> their torrance factory, they were expensive then, I can only imagine
what
> they run now.  They do not know what "Customer Servicve" is.  We went
through
> 4 foot plates before I had a friend of mine make them out of metal.
Also,
> Patrick, when he gets excited, lunges forward and has pulled the
shoulder
> harness fasteners  through the netting material, not once but at every
> position.  Nothing that was damaged was replaced under their "Limited
> Life-Time Warranty", YOUR CHILD IS DESTRUCTIVE, WHAT HE NEEDS IS A
TANK!!!!.

> They have a new, or at least new to us, stroller where the back
reclines from
> the standard 5% all the way to 45% so when the user falls asleep you
can
> let them recline rather than try to sleep with their head leaning
forward.
> which looks so uncomfortable.
>
> Good luck.
>
> Tom, Chirs, Kelly, Thomas, and Patrick (7.5 del +)
> Long Beach, CA, and Bifgork,MT.

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

Date: Sat, 31 Jul 1999 14:19:19 EDT
From: A9erGal@...
Subject: Dr. Laura Advises Mom to get a sitter*

In a message dated 7/31/99 2:15:01 AM, ronylu@... writes:

<< Then incredibly, Dr. Laura recommends
>that mother should just put her kid in an institution so she can spend
more
>time with the rest of the family. >>

FOR THOSE oops that want to hear the broadcast--you can zip forward to
1.43
and get the exact conversation. I listened to the entire
broadcast--which
none of you would want to do.
I don't agree with some of the things Dr. Laura suggests and I think she
can
be down right rude and uncaring at times.  And, she does give
misinformation.
  But, in this conversation I think she was sensitive and gave good
advise.
What she actually said to the mother who was almost in uncontrolable
tears,
was to get a sitter for the birthday party, first.  Then they talked
some
more.  Dr. Laura supported the great efforts these parents are giving
toward
an autistic son who at the present is out of control.  She only
suggested
institutionalizing as a down the road thought.  And, only because this
son
could become more out of control and a danger to himself and others. She

mentioned how an institution (should have used a different word) has
trained
staff and a controlled enviornment.

She brought a bit of peace to this mom who is trying to do the right
thing
for everyone in her family---and has put her son first (as we all do our

angels) and was coming against a growing up son with behaviors that
wouldn't
be appropriate at a family dinner.

We could have suggested more to this mom--a take-along Companion to help
with
the son.  I smiled with dismay when Dr. Laura said get a sitter--which
God
knows we all try to FIND.

Today our family is actually invited to a birthday-swim party for a
six-year-old.  My 26-year-old and my six-year-old grandson and myself
are
going. Nelly is staying at home because we have tried this same
situation a
year ago and it just isn't comfortable for long for Nelly and then it
gets
uncomfortable for everyone else.  I feel Nelly feels more comfortable
listening to her tapes and maybe even taking a nap.  Last Sunday we took
her
to a picnic---they roasted whole pigs.  She got a kick out of that and
we
took a picture of her turning the pig ont he fire.  But, she was only
"good"
"happy" "part of the group" for around an hour. We had a Companion with
us to
walk her around etc....but, as he said  "it was a limited place for
Nelly to
enjoy"  So, he took her back home after three hours of trying.

It is hard, sometimes, to decide when it is appropriate and not to take
our
angels places. My husband and I are the first to say, "our kids have
always
gone where we go and if they aren't invited we stay home."  It's
different
with Nelly as she gets older. She has her preferences and we do and the
host
does.  It's just a different choice making time.

Anyway, that's what I got out of this broadcast---fitting for the day
I'm not
taking Nelly to a birthday party.  She's already been in her wading
pool--had
books read to her twice---watched 10 vidieos--not to completion on
any--had a
snack--etc......she is happy--why distrub it?

Just my opinion----------and one day---we might have to think about a
more
structured place for Nelly---but not now and we feel confident with
that.
This poor mom on the radio hasn't had our group--which she did.

Kathy & Nelly

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

Date: Sat, 31 Jul 1999 07:17:13 -0400
From: "Fred Windbeck, Jr." <windbeck@...>
Subject: Dr Laura's Advice

Hi Everyone:

I am a Dr. Laura fan and I admire and respect her advice.  I don't
listen
all the time, only when I am in the car and she happens to be on the
air.
Yesterday, I had to go to David's residential program office to sign
some
checks and on the way home heard the segment with the mother of the
autistic child.

The conversation went basically as described on the list and I made a
mental note that given the opportunity I would advise angel parents to
make
sure they balance the attention they give to any other children they
have
and make sure they are looking out for themselves too.  In this
particular
instance there is something going on in the family (guilt, shame, blame
or
whatever) and both the mother and father are having a difficult time
coping
with their situation.  (Their other children are being shifted from the
maternal to the paternal grandparents.)  Apparently, they need help from
some outside resources (respite care, etc) but have not been able or are
unwilling to obtain it.

Dr. Laura was giving the mother some good advice--i.e.  you deserve a
life,
there is no guilt in your situation, step back and look at your
situation,
seek help.  I do not recall Dr. Laura suggesting institutionalization
but
she did leave open that possibility as and if the situation warranted
it.

As angel parents it is important to recognize that there will come a day
when you will no longer be able to provide the care your angel needs.
In
fact, I recommend strongly that every angel parent begin to plan for
that
day.  It is also important, as Dr. Laura suggested, to live a life.  The
balance of attending to an angel and your own needs is very tenuous but
oh,
so important.  If the caregiver(s) burn out its not good.  Everyone's
circumstances are different and there is literally no one that has
"walked
in our shoes" but ourselves.  We have to make decisions based on our
circumstances and regardless of the road blocks put in our way, we have
to
move forward with life. And as we do that,  we have to keep in mind that
the end of our life comes closer every breath we take and we have to
make
every moment special is some way.

Let's not be too hard on Dr. Laura.  She is doing her best to swing the
moral pendulum in our country back where it belongs.

Regards

Fred Windbeck, (David 31, del+) Silver Spring, Md.

Fred Windbeck (David 31, del+) Silver Spring, Md.

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

Date: Sat, 31 Jul 1999 12:28:38 EDT
From: ESTEE687@...
Subject: Dr Laura's Advice

In a message dated 7/31/99 8:33:17 AM Central Daylight Time,
windbeck@... writes:

<< Let's not be too hard on Dr. Laura.  She is doing her best to swing
the
  moral pendulum in our country back where it belongs.
   >>
Fred- I think I agree. I feel we need a break sometimes, and so do the
rest
of our families.

Cindy Spicka

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

Date: Sat, 31 Jul 1999 22:36:22 -0000
From: "Koren Allen" <kallen@...>
Subject: Dr Laura/Conference

Hello everyone,

I think maybe Dr. Laura is a little like Rush Limbaugh, you either love
her
or hate her.  I'm not going to necessarily make any statement of my
opinion
one way or another because I don't much like dealing with flames.  But
she
did make an interesting point, about being fair to siblings.  Julie, you
are
working on a presentation about sibling issues, maybe you can talk about
sibling rivalry/resentment over missing out on some of the things that
"normal" families do.  I could be wrong, but I think a lot of sibs deal
with
these feelings just like we parents do from time to time, but are afraid
to
say anything because they know it's not our Angel's fault.  I have
worried
about my boys sometimes, though they have never given any indication
that
they resent their sister or her condition (so far)  I am also EXTREMELY
blessed to have my mother right across the street to watch Meg, so the
boys
can be involved in soccer and baseball.
Wish I could be there to hear your presentation. :)  Do you know yet if
this
will be one of the ones available to the list?  It would be good to have
a
better perspective of how AS will affect my boys as they grow up, and
what I
can do to help them.

Take care
Koren,  mom to Meghan del-, Bryan, David
Butler, MO

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

Date: Sat, 31 Jul 1999 16:22:31 EDT
From: A9erGal@...
Subject: Fwd: Dr. Laura Advises Mom to get a sitter*

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Date: Sat, 31 Jul 1999 14:19:19 EDT
Subject: Dr. Laura Advises Mom to get a sitter*
To: ronylu@..., angelman-l@...
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In a message dated 7/31/99 2:15:01 AM, ronylu@... writes:

<< Then incredibly, Dr. Laura recommends
>that mother should just put her kid in an institution so she can spend
more
>time with the rest of the family. >>

FOR THOSE oops that want to hear the broadcast--you can zip forward to
1.43
and get the exact conversation. I listened to the entire
broadcast--which
none of you would want to do.
I don't agree with some of the things Dr. Laura suggests and I think she
can
be down right rude and uncaring at times.  And, she does give
misinformation.
  But, in this conversation I think she was sensitive and gave good
advise.
What she actually said to the mother who was almost in uncontrolable
tears,
was to get a sitter for the birthday party, first.  Then they talked
some
more.  Dr. Laura supported the great efforts these parents are giving
toward
an autistic son who at the present is out of control.  She only
suggested
institutionalizing as a down the road thought.  And, only because this
son
could become more out of control and a danger to himself and others. She

mentioned how an institution (should have used a different word) has
trained
staff and a controlled enviornment.

She brought a bit of peace to this mom who is trying to do the right
thing
for everyone in her family---and has put her son first (as we all do our

angels) and was coming against a growing up son with behaviors that
wouldn't
be appropriate at a family dinner.

We could have suggested more to this mom--a take-along Companion to help
with
the son.  I smiled with dismay when Dr. Laura said get a sitter--which
God
knows we all try to FIND.

Today our family is actually invited to a birthday-swim party for a
six-year-old.  My 26-year-old and my six-year-old grandson and myself
are
going. Nelly is staying at home because we have tried this same
situation a
year ago and it just isn't comfortable for long for Nelly and then it
gets
uncomfortable for everyone else.  I feel Nelly feels more comfortable
listening to her tapes and maybe even taking a nap.  Last Sunday we took
her
to a picnic---they roasted whole pigs.  She got a kick out of that and
we
took a picture of her turning the pig ont he fire.  But, she was only
"good"
"happy" "part of the group" for around an hour. We had a Companion with
us to
walk her around etc....but, as he said  "it was a limited place for
Nelly to
enjoy"  So, he took her back home after three hours of trying.

It is hard, sometimes, to decide when it is appropriate and not to take
our
angels places. My husband and I are the first to say, "our kids have
always
gone where we go and if they aren't invited we stay home."  It's
different
with Nelly as she gets older. She has her preferences and we do and the
host
does.  It's just a different choice making time.

Anyway, that's what I got out of this broadcast---fitting for the day
I'm not
taking Nelly to a birthday party.  She's already been in her wading
pool--had
books read to her twice---watched 10 vidieos--not to completion on
any--had a
snack--etc......she is happy--why distrub it?

Just my opinion----------and one day---we might have to think about a
more
structured place for Nelly---but not now and we feel confident with
that.
This poor mom on the radio hasn't had our group--which she did.

Kathy & Nelly

--part1_1e67f745.24d4b507_boundary--

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

Date: Sat, 31 Jul 1999 15:49:54 -0700
From: "Michelle and Ken Martin" <4mkmartin@...>
Subject: Lactulose syrup

Schayne's gastro doc had us go the round with Lactulose syrup.  This
worked
for quite a while, but he seemed to quickly build up a tolerence.  He
got
to hte point that he was taking so much, it was causing stomach cramps,
etc.  A year later, we went back to this doc and he is the one who says
to
use the m.o.m.  We had actually gotten up to a large dose of this and
then
once he started on the secretin, he is taking about 1/5 the dose with
better results.  Good Luck!
Michelle and Ken Martin

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

Date: Sat, 31 Jul 1999 10:00:13 -0700
From: "Michelle and Ken Martin" <4mkmartin@...>
Subject: M.O.M.

Sorry for the confusion, just assumed everyone would know, M.O.M. is
Milk
of Magnesia.
Michelle and Ken Martin

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

Date: Sat, 31 Jul 1999 09:17:43 -0500
From: "Linda" <wesman@...>
Subject: M.O.M.

anyone whose angel that had a problem with constipation like David had
would
definately know what     mom     is lol
-----Original Message-----
From: Michelle and Ken Martin <4mkmartin@...>
To: rhinoclan@... <rhinoclan@...>
Cc: Angelman Support Group <angelman-l@...>
Date: Saturday, July 31, 1999 9:15 AM
Subject: M.O.M.


>Sorry for the confusion, just assumed everyone would know, M.O.M. is
Milk
>of Magnesia.
>Michelle and Ken Martin
>

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

Date: Sat, 31 Jul 1999 13:11:19 EDT
From: KAYLEYWD@...
Subject: M.O.M.

In a message dated 07/31/1999 12:31:31 PM Eastern Daylight Time,
wesman@... writes:

<< anyone whose angel that had a problem with constipation like David
had
would
  definately know what     mom     is lol >>

Kayla was just prescribed Lactulose for her constipation.  Has anyone
used
this and if so, did it work?  We haven't used it yet.

Beth
Kayla's Mom
Thurmont, Maryland

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

Date: Sat, 31 Jul 1999 19:34:11 PDT
From: "Tracy Anderson" <babymks5@...>
Subject: M.O.M.

Dear Beth,
     Dustin , my 8 year old tomorrow, uses lactulose everyday. It keeps
him
moving. He not only suffers from ADHD but has chronic severe
constipation.
He also frequently uses colace. He does not like the texture. I have to
mix
it with juice or sunny D. Dalton, my little angel uses pediasure with
fiber
because he is strictly fed by g-tube.
Tracy
mom to Dalton Skye(del-) (15mos)
Katie Jane(4)
Ashley Brooke(6) and dev. delayed
Dustin Travis(8 tomorrow)(ADHD)
and the coat hanger I keep in my bathroom
Baltimore, Maryland

>From: KAYLEYWD@...
>To: wesman@..., 4mkmartin@..., rhinoclan@...
>CC: angelman-l@...
>Subject: Re: M.O.M.
>Date: Sat, 31 Jul 1999 13:11:19 EDT
>
>In a message dated 07/31/1999 12:31:31 PM Eastern Daylight Time,
>wesman@... writes:
>
><< anyone whose angel that had a problem with constipation like David
had
>would
>  definately know what     mom     is lol >>
>
>Kayla was just prescribed Lactulose for her constipation.  Has anyone
used
>this and if so, did it work?  We haven't used it yet.
>
>Beth
>Kayla's Mom
>Thurmont, Maryland


_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com

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

Date: Sat, 31 Jul 1999 18:37:57 EDT
From: Beccangel@...
Subject: pictures on the list

Hi Linda--

I suspect you will get lots of response to this, but I will add my
2cents
worth anyway.

This complaint, about sending pictures, sites, anything that must be
downloaded--has come up before, and it confused me, too.  I had to read
the
letter several times, from several perspectives to understand.  I belong
to
the listserve.  I get a number of letters in my mailbox, and as you
pointed
out, I can read them, delete them, open them and download later, etc.
The
person who wrote the letter belongs to the digest.   It is like one long

running document--think of a roll of toilet paper if you want.  Once
they
"open" it, it will run until it is empty, and it will open every
document,
(that is how a virus was recently spread to our poor, unsuspecting
friends),
download every picture, take them to every site.  They have no control
over
this.

Some people belong to the digest because they have only one mailbox, and

sometimes it can get "full" of angelman mail, and then they can receive
no
other mail--business, friends, family.  So they receive one long digest
that
looks like only one piece of mail in their mailbox, but is actually
about
40-50 letters.

I hope this clears things up for you.  I, too, thought some of those
complaints were rather petty, but after I saw the whole picture, I could
see
what the problem was and what they were asking us to do.  BTW, I could
be
wrong in my understanding of the digest, people can feel free to correct
me
if I am wrong.

Jane, mom to Rebecca, 7 +Meth, and Emily, 12
SF Bay Area, California, USA

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

Date: Sat, 31 Jul 1999 14:55:10 EDT
From: KATZASF@...
Subject: Re: Interesting finding on Risperadol

Dear all,
      To clear up some confusion, the conference will not be video taped.
The
cost of video taping was prohibitively expensive and would have added
more to
the already large expense of the conference.  There will be audio taping
of
each session, and these will be available after the conference.  In
addition,
selected sessions will be available in their entirety on-line (audio
with
still phots) shortly after the conference at a web address to be
determined.
We will post this address as soon as it is available.
---Steve & Sharon Katz
Conference Chairs

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

Date: Sat, 31 Jul 1999 14:19:04 -0500
From: suebay@...
Subject: Scary...

Okay, I had to write in and tell why I have been too busy to post much
these days too.  Well to start off with I have had a summer filled with
6
kids and their different activities.  Our special education school
district office pays for special ed kids to go to day camp rather then
have them go to summer school.  (You have a choice)  I choose summer
camp
for Catie and my youngest who is in a mild mh class.  My youngest has
loved it!  She has been kept so busy and is wonr out everyday. (Which I
love)  Catie has enjoyed her camp too, but there have been some minor
annoyances.  First was the day when I picked her up and she was
sunburned.  One of the counslers asked if we had been swimming over the
weekend....  I said no, she got that burn here today.  On my way out one
of the other counselors said  I'm sorry we forgot Catie's sunscreen.
The
next time they went swimming I said "don't forget the sunscreen this
time"  They tried to argue with me that they had used it.  I let this
drop.  Then  a few days later I walk in to pick up Catie and the room
stinks like urine  BAD!!!!  I said "Oh no  let me guess that's Catie?"
They said yes, she had peed while they were about to dress her after
swimming.  They were sorry but they had to use her towel to clean it
up....  I looked at Catie, she was CHEWING ON HER TOWEL!!!  And she had
been for sometime.  It had red stains spreading all over it from her
koolaid mouth.  This towel stunk so bad I gagged all the way home.  I
was
totally grossed out and a little pissed off, but I figured okay, things
will get better.   WELL, on thursday I picked her up and the counselor
said "Catie had a bloody nose today, we didn't know how to stop her from
picking her nose, so WE TAPED HER FINGERS TOGETHER WITH BANDAGE TAPE.  I
was so shocked I didn't know what to do or say.  I left and then called
them the next day.  I told them taping her hands was very close to child
abuse, that I am not going to file a report to the child welfare office,
but I did report it to the director of camp (who happened to be the one
who did this!) and also to the specail ed school office.  I am also
composing a letter to the head of our park district (where the camps are
held)  I decided against the child abuse report because all of these
camp
counselors and the director are all teens.  I am going to strongly
suggest however that they are supervised much closer in the future.
Also
next year Catie will attend summer school  NOT CAMP!
Susie Cato, one MAD Mamma to Catie 9.9 del+ , and many many more
Round Lake Park IL

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

Date: Sat, 31 Jul 1999 11:36:09 EDT
From: TDixon999@...
Subject: Scott Wilcox where are you

HI SCOTT,

HOPE ALL IS WELL.

CONTACT US AS WELL.

THANKS

TOM AND CHRIS

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

Date: Sat, 31 Jul 1999 09:43:49 -0700
From: "Lisa Baker" <alliecat@...>
Subject: Two Story Homes

This is a multi-part message in MIME format.

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Does anyone live in a two story home? If so, how do you manage with the
=
stairs (especially for those who have angels that don't walk)?=20

Lisa
(Allie - 3.5 - clincal)

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<DIV><FONT color=3D#000000 size=3D2>Does anyone live in a two story =
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do you manage with the stairs (especially for those who have angels that
=
don't=20
walk)? </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 size=3D2>Lisa</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>(Allie - 3.5 -=20
clincal)</FONT></DIV></BODY></HTML>

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

Date: Sat, 31 Jul 1999 12:29:57 -0500
From: suebay@...
Subject: Two Story Homes

We just moved into our first two story home a little over a year ago.
Catie does not walk and at 9.9 years old weighs about 85 pounds.  She
crawls up the stairs by herself (with one of us following her so she
doesn't fall)  to get her down the stairs either my husband carries her
(which is getting harder day by day) or we bump her down.  She loves to
bump down and we are hoping she will get the hang of it and be able to
do
it by herself in the future.  We do it by having one of us sit on the
step below her.   We grab her legs around our waist and bump her down
one
step at a time.  Of course Catie is giggling the whole way down.  We
have
tried getting her to crawl backwards down the steps, but she doesn't do
reverse.  She will just keep going back up them!
Susie Cato  mom to Bumpy Catie 9.9 del+, and many more
Round Lake Park IL
http://www.homestead.com/susiesplace/index.html

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

Date: Sat, 31 Jul 1999 16:28:40 -0500
From: Dale & Penny Schwent <pschwent@...>
Subject: Two Story Homes

Hi Lisa,
We moved into our two story home before Emily could walk. When she was
able to
crawl she did crawl up the stairs but amazingly would not even try to
come
down them.  As she got older she would come down either on her butt,
step by
step, or slide down head first on her stomach. (This looked scary for me
but
she was actually very much in control)  Now that she's walking she still
crawls up, or walks holding onto my hand.  She still is not able to walk
down
more than a few stairs on her own (we have goofy handrails) but usually
sit-bumps down until she reaches the railing.  When I bring her down in
the
morning I usually use a "fireman carry" over my shoulder, she's still
small
enough to carry like this and it doesn't hurt my back (Emily weighs 58
pounds).  At night when it's time for bed I get her to go up the stairs
with
me holding my hand by showing her her pacifier and cup of milk. She'll
go
anywhere for them!
Penny
Mom to Emily , 6.11 and 58lbs.
Schaumburg, IL

> Lisa Baker wrote:
>
> Does anyone live in a two story home? If so, how do you manage with
> the stairs (especially for those who have angels that don't walk)?
>
> Lisa
> (Allie - 3.5 - clincal)

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

Date: Sun, 1 Aug 1999 01:42:09 -0700
From: "The Mayo's" <kmayo@...>
Subject: video of conference

Hi everyobody.  If anyone finds out about a video, please post it on the
list.  We can't go to the conference and I would love to have the
information and to feel like I was a part of it in some small way.  We
have
just recently been given the AS diagnosis (clinical) and I hate to miss
out
on the great information.  I really enjoyed reading through the Seattle
conf. info. while I was searching the Web.  I just want to say also how
much
I enjoy this list.  I'm not able to post too much but I do try to read
through in the evening.  I hope to be able to post more once school
starts,
but I teach full-time so I'm not sure If that will be possible.  Also, I
have to share this computer with a 14 year old!  I hope everyone has a
wonderful and educational time at the conference.  Susan (mom to Chelsea
11
AS,Matthew 14,and Sydney 15 mos.)
-----Original Message-----
From: Kristy M Houston <kristy.houston@...>
To: Angelman-l@... <Angelman-l@...>
Date: Friday, July 30, 1999 11:24 PM
Subject: video of conference


>I would really like a video of the whole conference also.  Does any one
know
>for sure if they are taping it, and who could we get it from?  The
>foundation in Florida might have it?  Look how crazy I am, I'm
answering my
>own question. Ha!
>
>Kristy, mom to Adrian and Riley 23 months, del +, and Hubby Randy
>-----Original Message-----
>From: MS <mas21@...>
>To: p3boysnme <p3boysnme@...>
>Cc: angelman-l@... <angelman-l@...>
>Date: Friday, July 30, 1999 8:15 PM
>Subject: Re: Interesting finding on Risperadol
>
>
>>Dear Jane,
>>
>>I'm sorry; I'm not the person to ask about this (we're a highly
>>compartmentalized bunch!).  I think Sharon and Steve Katz could tell
>>you:  SSBSJKatz@...
>>
>>Martha
>>
>>
>>p3boysnme wrote:
>>>
>>> Dear Martha and all,
>>>
>>> I'm not arriving to the conference until the 13th.  Sean is a new
>Risperdal
>>> user.  Please refresh my memory...did I read that we can buy
video-taped
>>> lectures from the conference?  This is one I would surely buy.
>>>
>>> Thanks,
>>> Jane
>>> Sean's Mom UPD age 8
>>> ----------
>>> >From: MS <mas21@...>
>>> >To: A9erGal@...
>>> >Subject: Re: Interesting finding on Risperadol
>>> >Date: Fri, Jul 30, 1999, 12:32 PM
>>> >
>>>
>>> >Not to tout the Conference *too* much <g>:  Dr. Lawrence Brown, a
>>> >neurologist who uses Risperadol in several patients with AS, will
be
>>> >giving a big-time presentation on this drug and other behavior
>>> >medications on Aug. 12.
>>> >
>>> >Martha
>

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

End of Angelman-l Digest V99 #209
******************************

Zachery is also vocal when he wants something or something is wrong.  When
you talk to him he really tries hard to talk back.  No words, but different
vocalizations.  If you say..."Oh, poor Zach or poor baby", he uses the "Oh,
woe is me" vocalization. (My Mom and Dad taught him this when he was a
baby!):-)  If you say.."Yeah Zach!  What a good job you are doing standing!"
He uses the"I am the man!" (excited) vocalization.  When people come to
visit, which in his eyes is just to see him :-), he uses the "squealing"
vocalization.  Or if you say "Zach tell me a story" he will use his "long,
drawn out drolling" vocalization, like he is telling you all about it.  This
is the best that I can explain it.

Beth, Mom to Zach-8(del+).....WV
----- Original Message -----
From: <TESSABUG@...>
To: <angelman-l@...>
Sent: Saturday, July 31, 1999 8:21 PM
Subject: Angels vocalization


> This Friday I had the opportunity of spending 1 1/2 hr with as very good
> speech pathologist . While we were visiting Tessa was "requesting" my help
to
> turn on the tape player . What I mean by "requesting" is , not only did
she
> take my hand and try to get me to turn it on she also "vocalized" her
request
> ( open mouth vowel like sounds ) She also did the same thing when she
wanted
> me to open the container on the puzzle book , took my hand guided it to
the
> container and vocalizing all the time
> ( once I showed her how to open it she was able to open the other
containers
> on her own , even if the latch wasn't facing her she would just try every
> side till she found the side that opened ) She is frequently vocal in her
> attempt at communication , so what I was wanting to know is ....do most
> Angels vocalize like she does ? or are they usually silent ? she can be
very
> quiet but like I said she can also be very vocal , sometimes a bit to
vocal ,
> such as when she wants HER way   :-)      Of course the pathologist had
never
> heard of AS and she was very impressed with Tessa comprehension . Tessa
> didn't "show off" as much as she can but she did pretty good
>
> Teresa , mom of tornado Tessa

Hi,

Rowan also grunts ("uh") or says "ah" sounds when she wants something or is
trying to get our attention. No words.

Ann, Rowan 4 Winnipeg, Canada

Hello everyone,

I think maybe Dr. Laura is a little like Rush Limbaugh, you either love her
or hate her.  I'm not going to necessarily make any statement of my opinion
one way or another because I don't much like dealing with flames.  But she
did make an interesting point, about being fair to siblings.  Julie, you are
working on a presentation about sibling issues, maybe you can talk about
sibling rivalry/resentment over missing out on some of the things that
"normal" families do.  I could be wrong, but I think a lot of sibs deal with
these feelings just like we parents do from time to time, but are afraid to
say anything because they know it's not our Angel's fault.  I have worried
about my boys sometimes, though they have never given any indication that
they resent their sister or her condition (so far)  I am also EXTREMELY
blessed to have my mother right across the street to watch Meg, so the boys
can be involved in soccer and baseball.
Wish I could be there to hear your presentation. :)  Do you know yet if this
will be one of the ones available to the list?  It would be good to have a
better perspective of how AS will affect my boys as they grow up, and what I
can do to help them.

Take care
Koren,  mom to Meghan del-, Bryan, David
Butler, MO

Dear Beth,
     Dustin , my 8 year old tomorrow, uses lactulose everyday. It keeps him
moving. He not only suffers from ADHD but has chronic severe constipation.
He also frequently uses colace. He does not like the texture. I have to mix
it with juice or sunny D. Dalton, my little angel uses pediasure with fiber
because he is strictly fed by g-tube.
Tracy
mom to Dalton Skye(del-) (15mos)
Katie Jane(4)
Ashley Brooke(6) and dev. delayed
Dustin Travis(8 tomorrow)(ADHD)
and the coat hanger I keep in my bathroom
Baltimore, Maryland

>From: KAYLEYWD@...
>To: wesman@..., 4mkmartin@..., rhinoclan@...
>CC: angelman-l@...
>Subject: Re: M.O.M.
>Date: Sat, 31 Jul 1999 13:11:19 EDT
>
>In a message dated 07/31/1999 12:31:31 PM Eastern Daylight Time,
>wesman@... writes:
>
><< anyone whose angel that had a problem with constipation like David had
>would
>  definately know what     mom     is lol >>
>
>Kayla was just prescribed Lactulose for her constipation.  Has anyone used
>this and if so, did it work?  We haven't used it yet.
>
>Beth
>Kayla's Mom
>Thurmont, Maryland


_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com

This Friday I had the opportunity of spending 1 1/2 hr with as very good
speech pathologist . While we were visiting Tessa was "requesting" my help to
turn on the tape player . What I mean by "requesting" is , not only did she
take my hand and try to get me to turn it on she also "vocalized" her request
( open mouth vowel like sounds ) She also did the same thing when she wanted
me to open the container on the puzzle book , took my hand guided it to the
container and vocalizing all the time
( once I showed her how to open it she was able to open the other containers
on her own , even if the latch wasn't facing her she would just try every
side till she found the side that opened ) She is frequently vocal in her
attempt at communication , so what I was wanting to know is ....do most
Angels vocalize like she does ? or are they usually silent ? she can be very
quiet but like I said she can also be very vocal , sometimes a bit to vocal ,
such as when she wants HER way   :-)      Of course the pathologist had never
heard of AS and she was very impressed with Tessa comprehension . Tessa
didn't "show off" as much as she can but she did pretty good

Teresa , mom of tornado Tessa

Hi Linda--

I suspect you will get lots of response to this, but I will add my 2cents
worth anyway.

This complaint, about sending pictures, sites, anything that must be
downloaded--has come up before, and it confused me, too.  I had to read the
letter several times, from several perspectives to understand.  I belong to
the listserve.  I get a number of letters in my mailbox, and as you pointed
out, I can read them, delete them, open them and download later, etc.  The
person who wrote the letter belongs to the digest.   It is like one long
running document--think of a roll of toilet paper if you want.  Once they
"open" it, it will run until it is empty, and it will open every document,
(that is how a virus was recently spread to our poor, unsuspecting friends),
download every picture, take them to every site.  They have no control over
this.

Some people belong to the digest because they have only one mailbox, and
sometimes it can get "full" of angelman mail, and then they can receive no
other mail--business, friends, family.  So they receive one long digest that
looks like only one piece of mail in their mailbox, but is actually about
40-50 letters.

I hope this clears things up for you.  I, too, thought some of those
complaints were rather petty, but after I saw the whole picture, I could see
what the problem was and what they were asking us to do.  BTW, I could be
wrong in my understanding of the digest, people can feel free to correct me
if I am wrong.

Jane, mom to Rebecca, 7 +Meth, and Emily, 12
SF Bay Area, California, USA

Hi guys..coming out of lurk mode again here..We're getting really excited
about the upcoming conference and my only worry is Alecia's sister, Kim. I
am hoping she will get to meet some older siblings of angels..teenage, she's
15..to talk with and kind of hang out with.She thinks she's going to be the
only one there and what will she do all day and alone. My question is are
any of you bringing siblings with you...better yet, teenage ones.And are
there any sibling workshops planned...I really didn't see anything in the
conference info and assume she will go with Alecia and our friend/ respite
provider to the children's activities which sound great, it's one of those
adolescent things you know..........
thanks
Sandy
Mom to Alecia 13 AS+- and Kimberly 15
Falling Waters, WV

How in the world did you get one direct?  They would barely deal with me.
Emily also loves to lunge forward and I'm hoping the more expensive upholstery
will help prevent the harness fasteners from tearing out.  We only have one
row left intact right now and it's already showing wear.
I did see the Convaid Safari that reclines and it looks really nice (as long
as it's made to hold up to Angel activities)  I haven't gotten the new
upholstery yet but if it works I would check into the heavy-duty seat
upholstery when you're looking to buy or repair.

Penny
Emily's mom (6.11, del+)
Schaumburg, IL

TDixon999@... wrote:
>
> We purchased a convaid stroller about 4 years ago directly from convaid at
> their torrance factory, they were expensive then, I can only imagine what
> they run now.  They do not know what "Customer Servicve" is.  We went through
> 4 foot plates before I had a friend of mine make them out of metal.  Also,
> Patrick, when he gets excited, lunges forward and has pulled the shoulder
> harness fasteners  through the netting material, not once but at every
> position.  Nothing that was damaged was replaced under their "Limited
> Life-Time Warranty", YOUR CHILD IS DESTRUCTIVE, WHAT HE NEEDS IS A TANK!!!!.

> They have a new, or at least new to us, stroller where the back reclines from
> the standard 5% all the way to 45% so when the user falls asleep you can
> let them recline rather than try to sleep with their head leaning forward.
> which looks so uncomfortable.
>
> Good luck.
>
> Tom, Chirs, Kelly, Thomas, and Patrick (7.5 del +)
> Long Beach, CA, and Bifgork,MT.

Hi Lisa,
We moved into our two story home before Emily could walk. When she was able to
crawl she did crawl up the stairs but amazingly would not even try to come
down them.  As she got older she would come down either on her butt, step by
step, or slide down head first on her stomach. (This looked scary for me but
she was actually very much in control)  Now that she's walking she still
crawls up, or walks holding onto my hand.  She still is not able to walk down
more than a few stairs on her own (we have goofy handrails) but usually
sit-bumps down until she reaches the railing.  When I bring her down in the
morning I usually use a "fireman carry" over my shoulder, she's still small
enough to carry like this and it doesn't hurt my back (Emily weighs 58
pounds).  At night when it's time for bed I get her to go up the stairs with
me holding my hand by showing her her pacifier and cup of milk. She'll go
anywhere for them!
Penny
Mom to Emily , 6.11 and 58lbs.
Schaumburg, IL

> Lisa Baker wrote:
>
> Does anyone live in a two story home? If so, how do you manage with
> the stairs (especially for those who have angels that don't walk)?
>
> Lisa
> (Allie - 3.5 - clincal)

WOW!  You mean to say that your Angel would actually "Fall Asleep" while
going somewhere in his stroller!!!  Zach would never do that, he is way to
nosey!  He would be afraid that he would miss something!!! he! he!

Beth, Mom to Zach-8(del+).....WV
----- Original Message -----
From: <TDixon999@...>
To: <pschwent@...>; <angelman-l@...>
Sent: Saturday, July 31, 1999 11:59 AM
Subject: Re: Convaid stroller--part 2


> We purchased a convaid stroller about 4 years ago directly from convaid at
> their torrance factory, they were expensive then, I can only imagine what
> they run now.  They do not know what "Customer Servicve" is.  We went
through
> 4 foot plates before I had a friend of mine make them out of metal.  Also,
> Patrick, when he gets excited, lunges forward and has pulled the shoulder
> harness fasteners  through the netting material, not once but at every
> position.  Nothing that was damaged was replaced under their "Limited
> Life-Time Warranty", YOUR CHILD IS DESTRUCTIVE, WHAT HE NEEDS IS A
TANK!!!!.
>
> Chris recently called them and spoke to their machine, but we did receive
> their current catalog, but they do not list prices.
>
> I'm out of town next week with our other son, going to Boy Scout camp, but
> the following week we are going to their Torrance factory with the piece
of
> junk in hand.
>
> They have a new, or at least new to us, stroller where the back reclines
from
> the standard 5% all the way to 45% so when the user falls asleep you can
> let them recline rather than try to sleep with their head leaning forward.
> which looks so uncomfortable.
>
> Good luck.
>
> Tom, Chirs, Kelly, Thomas, and Patrick (7.5 del +)
> Long Beach, CA, and Bifgork,MT.

In a message dated 7/31/99 2:15:01 AM, ronylu@... writes:

<< Then incredibly, Dr. Laura recommends
>that mother should just put her kid in an institution so she can spend more
>time with the rest of the family. >>

FOR THOSE oops that want to hear the broadcast--you can zip forward to 1.43
and get the exact conversation. I listened to the entire broadcast--which
none of you would want to do.
I don't agree with some of the things Dr. Laura suggests and I think she can
be down right rude and uncaring at times.  And, she does give misinformation.
  But, in this conversation I think she was sensitive and gave good advise.
What she actually said to the mother who was almost in uncontrolable tears,
was to get a sitter for the birthday party, first.  Then they talked some
more.  Dr. Laura supported the great efforts these parents are giving toward
an autistic son who at the present is out of control.  She only suggested
institutionalizing as a down the road thought.  And, only because this son
could become more out of control and a danger to himself and others. She
mentioned how an institution (should have used a different word) has trained
staff and a controlled enviornment.

She brought a bit of peace to this mom who is trying to do the right thing
for everyone in her family---and has put her son first (as we all do our
angels) and was coming against a growing up son with behaviors that wouldn't
be appropriate at a family dinner.

We could have suggested more to this mom--a take-along Companion to help with
the son.  I smiled with dismay when Dr. Laura said get a sitter--which  God
knows we all try to FIND.

Today our family is actually invited to a birthday-swim party for a
six-year-old.  My 26-year-old and my six-year-old grandson and myself are
going. Nelly is staying at home because we have tried this same situation a
year ago and it just isn't comfortable for long for Nelly and then it gets
uncomfortable for everyone else.  I feel Nelly feels more comfortable
listening to her tapes and maybe even taking a nap.  Last Sunday we took her
to a picnic---they roasted whole pigs.  She got a kick out of that and we
took a picture of her turning the pig ont he fire.  But, she was only "good"
"happy" "part of the group" for around an hour. We had a Companion with us to
walk her around etc....but, as he said  "it was a limited place for Nelly to
enjoy"  So, he took her back home after three hours of trying.

It is hard, sometimes, to decide when it is appropriate and not to take our
angels places. My husband and I are the first to say, "our kids have always
gone where we go and if they aren't invited we stay home."  It's different
with Nelly as she gets older. She has her preferences and we do and the host
does.  It's just a different choice making time.

Anyway, that's what I got out of this broadcast---fitting for the day I'm not
taking Nelly to a birthday party.  She's already been in her wading pool--had
books read to her twice---watched 10 vidieos--not to completion on any--had a
snack--etc......she is happy--why distrub it?

Just my opinion----------and one day---we might have to think about a more
structured place for Nelly---but not now and we feel confident with that.
This poor mom on the radio hasn't had our group--which she did.

Kathy & Nelly

Schayne's gastro doc had us go the round with Lactulose syrup.  This worked
for quite a while, but he seemed to quickly build up a tolerence.  He got
to hte point that he was taking so much, it was causing stomach cramps,
etc.  A year later, we went back to this doc and he is the one who says to
use the m.o.m.  We had actually gotten up to a large dose of this and then
once he started on the secretin, he is taking about 1/5 the dose with
better results.  Good Luck!
Michelle and Ken Martin

Dear all,
      To clear up some confusion, the conference will not be video taped.  The
cost of video taping was prohibitively expensive and would have added more to
the already large expense of the conference.  There will be audio taping of
each session, and these will be available after the conference.  In addition,
selected sessions will be available in their entirety on-line (audio with
still phots) shortly after the conference at a web address to be determined.
We will post this address as soon as it is available.
---Steve & Sharon Katz
Conference Chairs

Okay, I had to write in and tell why I have been too busy to post much
these days too.  Well to start off with I have had a summer filled with 6
kids and their different activities.  Our special education school
district office pays for special ed kids to go to day camp rather then
have them go to summer school.  (You have a choice)  I choose summer camp
for Catie and my youngest who is in a mild mh class.  My youngest has
loved it!  She has been kept so busy and is wonr out everyday. (Which I
love)  Catie has enjoyed her camp too, but there have been some minor
annoyances.  First was the day when I picked her up and she was
sunburned.  One of the counslers asked if we had been swimming over the
weekend....  I said no, she got that burn here today.  On my way out one
of the other counselors said  I'm sorry we forgot Catie's sunscreen.  The
next time they went swimming I said "don't forget the sunscreen this
time"  They tried to argue with me that they had used it.  I let this
drop.  Then  a few days later I walk in to pick up Catie and the room
stinks like urine  BAD!!!!  I said "Oh no  let me guess that's Catie?"
They said yes, she had peed while they were about to dress her after
swimming.  They were sorry but they had to use her towel to clean it
up....  I looked at Catie, she was CHEWING ON HER TOWEL!!!  And she had
been for sometime.  It had red stains spreading all over it from her
koolaid mouth.  This towel stunk so bad I gagged all the way home.  I was
totally grossed out and a little pissed off, but I figured okay, things
will get better.   WELL, on thursday I picked her up and the counselor
said "Catie had a bloody nose today, we didn't know how to stop her from
picking her nose, so WE TAPED HER FINGERS TOGETHER WITH BANDAGE TAPE.  I
was so shocked I didn't know what to do or say.  I left and then called
them the next day.  I told them taping her hands was very close to child
abuse, that I am not going to file a report to the child welfare office,
but I did report it to the director of camp (who happened to be the one
who did this!) and also to the specail ed school office.  I am also
composing a letter to the head of our park district (where the camps are
held)  I decided against the child abuse report because all of these camp
counselors and the director are all teens.  I am going to strongly
suggest however that they are supervised much closer in the future.  Also
next year Catie will attend summer school  NOT CAMP!
Susie Cato, one MAD Mamma to Catie 9.9 del+ , and many many more
Round Lake Park IL

Hi everyobody.  If anyone finds out about a video, please post it on the
list.  We can't go to the conference and I would love to have the
information and to feel like I was a part of it in some small way.  We have
just recently been given the AS diagnosis (clinical) and I hate to miss out
on the great information.  I really enjoyed reading through the Seattle
conf. info. while I was searching the Web.  I just want to say also how much
I enjoy this list.  I'm not able to post too much but I do try to read
through in the evening.  I hope to be able to post more once school starts,
but I teach full-time so I'm not sure If that will be possible.  Also, I
have to share this computer with a 14 year old!  I hope everyone has a
wonderful and educational time at the conference.  Susan (mom to Chelsea 11
AS,Matthew 14,and Sydney 15 mos.)
-----Original Message-----
From: Kristy M Houston <kristy.houston@...>
To: Angelman-l@... <Angelman-l@...>
Date: Friday, July 30, 1999 11:24 PM
Subject: video of conference


>I would really like a video of the whole conference also.  Does any one
know
>for sure if they are taping it, and who could we get it from?  The
>foundation in Florida might have it?  Look how crazy I am, I'm answering my
>own question. Ha!
>
>Kristy, mom to Adrian and Riley 23 months, del +, and Hubby Randy
>-----Original Message-----
>From: MS <mas21@...>
>To: p3boysnme <p3boysnme@...>
>Cc: angelman-l@... <angelman-l@...>
>Date: Friday, July 30, 1999 8:15 PM
>Subject: Re: Interesting finding on Risperadol
>
>
>>Dear Jane,
>>
>>I'm sorry; I'm not the person to ask about this (we're a highly
>>compartmentalized bunch!).  I think Sharon and Steve Katz could tell
>>you:  SSBSJKatz@...
>>
>>Martha
>>
>>
>>p3boysnme wrote:
>>>
>>> Dear Martha and all,
>>>
>>> I'm not arriving to the conference until the 13th.  Sean is a new
>Risperdal
>>> user.  Please refresh my memory...did I read that we can buy video-taped
>>> lectures from the conference?  This is one I would surely buy.
>>>
>>> Thanks,
>>> Jane
>>> Sean's Mom UPD age 8
>>> ----------
>>> >From: MS <mas21@...>
>>> >To: A9erGal@...
>>> >Subject: Re: Interesting finding on Risperadol
>>> >Date: Fri, Jul 30, 1999, 12:32 PM
>>> >
>>>
>>> >Not to tout the Conference *too* much <g>:  Dr. Lawrence Brown, a
>>> >neurologist who uses Risperadol in several patients with AS, will be
>>> >giving a big-time presentation on this drug and other behavior
>>> >medications on Aug. 12.
>>> >
>>> >Martha
>

In a message dated 7/31/99 2:15:01 AM, ronylu@... writes:

<< Then incredibly, Dr. Laura recommends
>that mother should just put her kid in an institution so she can spend more
>time with the rest of the family. >>

FOR THOSE oops that want to hear the broadcast--you can zip forward to 1.43
and get the exact conversation. I listened to the entire broadcast--which
none of you would want to do.
I don't agree with some of the things Dr. Laura suggests and I think she can
be down right rude and uncaring at times.  And, she does give misinformation.
  But, in this conversation I think she was sensitive and gave good advise.
What she actually said to the mother who was almost in uncontrolable tears,
was to get a sitter for the birthday party, first.  Then they talked some
more.  Dr. Laura supported the great efforts these parents are giving toward
an autistic son who at the present is out of control.  She only suggested
institutionalizing as a down the road thought.  And, only because this son
could become more out of control and a danger to himself and others. She
mentioned how an institution (should have used a different word) has trained
staff and a controlled enviornment.

She brought a bit of peace to this mom who is trying to do the right thing
for everyone in her family---and has put her son first (as we all do our
angels) and was coming against a growing up son with behaviors that wouldn't
be appropriate at a family dinner.

We could have suggested more to this mom--a take-along Companion to help with
the son.  I smiled with dismay when Dr. Laura said get a sitter--which  God
knows we all try to FIND.

Today our family is actually invited to a birthday-swim party for a
six-year-old.  My 26-year-old and my six-year-old grandson and myself are
going. Nelly is staying at home because we have tried this same situation a
year ago and it just isn't comfortable for long for Nelly and then it gets
uncomfortable for everyone else.  I feel Nelly feels more comfortable
listening to her tapes and maybe even taking a nap.  Last Sunday we took her
to a picnic---they roasted whole pigs.  She got a kick out of that and we
took a picture of her turning the pig ont he fire.  But, she was only "good"
"happy" "part of the group" for around an hour. We had a Companion with us to
walk her around etc....but, as he said  "it was a limited place for Nelly to
enjoy"  So, he took her back home after three hours of trying.

It is hard, sometimes, to decide when it is appropriate and not to take our
angels places. My husband and I are the first to say, "our kids have always
gone where we go and if they aren't invited we stay home."  It's different
with Nelly as she gets older. She has her preferences and we do and the host
does.  It's just a different choice making time.

Anyway, that's what I got out of this broadcast---fitting for the day I'm not
taking Nelly to a birthday party.  She's already been in her wading pool--had
books read to her twice---watched 10 vidieos--not to completion on any--had a
snack--etc......she is happy--why distrub it?

Just my opinion----------and one day---we might have to think about a more
structured place for Nelly---but not now and we feel confident with that.
This poor mom on the radio hasn't had our group--which she did.

Kathy & Nelly

We just moved into our first two story home a little over a year ago.
Catie does not walk and at 9.9 years old weighs about 85 pounds.  She
crawls up the stairs by herself (with one of us following her so she
doesn't fall)  to get her down the stairs either my husband carries her
(which is getting harder day by day) or we bump her down.  She loves to
bump down and we are hoping she will get the hang of it and be able to do
it by herself in the future.  We do it by having one of us sit on the
step below her.   We grab her legs around our waist and bump her down one
step at a time.  Of course Catie is giggling the whole way down.  We have
tried getting her to crawl backwards down the steps, but she doesn't do
reverse.  She will just keep going back up them!
Susie Cato  mom to Bumpy Catie 9.9 del+, and many more
Round Lake Park IL
http://www.homestead.com/susiesplace/index.html

In a message dated 07/31/1999 12:31:31 PM Eastern Daylight Time,
wesman@... writes:

<< anyone whose angel that had a problem with constipation like David had
would
  definately know what     mom     is lol >>

Kayla was just prescribed Lactulose for her constipation.  Has anyone used
this and if so, did it work?  We haven't used it yet.

Beth
Kayla's Mom
Thurmont, Maryland

In a message dated 7/31/99 8:33:17 AM Central Daylight Time,
windbeck@... writes:

<< Let's not be too hard on Dr. Laura.  She is doing her best to swing the
  moral pendulum in our country back where it belongs.
   >>
Fred- I think I agree. I feel we need a break sometimes, and so do the rest
of our families.

Cindy Spicka

We have noticed that when Patrick is dehydrated.  That occurs when he gets
sick and will not eat or drink anything for several days.  Then it is time
for 2-3 days in the hospital getting re-hydrated.

Chris, Tom, Kelly, Thomas, Patrick (7.5 del +)

We purchased a convaid stroller about 4 years ago directly from convaid at
their torrance factory, they were expensive then, I can only imagine what
they run now.  They do not know what "Customer Servicve" is.  We went through
4 foot plates before I had a friend of mine make them out of metal.  Also,
Patrick, when he gets excited, lunges forward and has pulled the shoulder
harness fasteners  through the netting material, not once but at every
position.  Nothing that was damaged was replaced under their "Limited
Life-Time Warranty", YOUR CHILD IS DESTRUCTIVE, WHAT HE NEEDS IS A TANK!!!!.

Chris recently called them and spoke to their machine, but we did receive
their current catalog, but they do not list prices.

I'm out of town next week with our other son, going to Boy Scout camp, but
the following week we are going to their Torrance factory with the piece of
junk in hand.

They have a new, or at least new to us, stroller where the back reclines from
the standard 5% all the way to 45% so when the user falls asleep you can
let them recline rather than try to sleep with their head leaning forward.
which looks so uncomfortable.

Good luck.

Tom, Chirs, Kelly, Thomas, and Patrick (7.5 del +)
Long Beach, CA, and Bifgork,MT.

HI SCOTT,

HOPE ALL IS WELL.

CONTACT US AS WELL.

THANKS

TOM AND CHRIS

anyone whose angel that had a problem with constipation like David had would
definately know what     mom     is lol
-----Original Message-----
From: Michelle and Ken Martin <4mkmartin@...>
To: rhinoclan@... <rhinoclan@...>
Cc: Angelman Support Group <angelman-l@...>
Date: Saturday, July 31, 1999 9:15 AM
Subject: M.O.M.


>Sorry for the confusion, just assumed everyone would know, M.O.M. is Milk
>of Magnesia.
>Michelle and Ken Martin
>

Sorry for the confusion, just assumed everyone would know, M.O.M. is Milk
of Magnesia.
Michelle and Ken Martin

Hi Everyone:

I am a Dr. Laura fan and I admire and respect her advice.  I don't listen
all the time, only when I am in the car and she happens to be on the air.
Yesterday, I had to go to David's residential program office to sign some
checks and on the way home heard the segment with the mother of the
autistic child.

The conversation went basically as described on the list and I made a
mental note that given the opportunity I would advise angel parents to make
sure they balance the attention they give to any other children they have
and make sure they are looking out for themselves too.  In this particular
instance there is something going on in the family (guilt, shame, blame or
whatever) and both the mother and father are having a difficult time coping
with their situation.  (Their other children are being shifted from the
maternal to the paternal grandparents.)  Apparently, they need help from
some outside resources (respite care, etc) but have not been able or are
unwilling to obtain it.

Dr. Laura was giving the mother some good advice--i.e.  you deserve a life,
there is no guilt in your situation, step back and look at your situation,
seek help.  I do not recall Dr. Laura suggesting institutionalization but
she did leave open that possibility as and if the situation warranted it.

As angel parents it is important to recognize that there will come a day
when you will no longer be able to provide the care your angel needs.  In
fact, I recommend strongly that every angel parent begin to plan for that
day.  It is also important, as Dr. Laura suggested, to live a life.  The
balance of attending to an angel and your own needs is very tenuous but oh,
so important.  If the caregiver(s) burn out its not good.  Everyone's
circumstances are different and there is literally no one that has "walked
in our shoes" but ourselves.  We have to make decisions based on our
circumstances and regardless of the road blocks put in our way, we have to
move forward with life. And as we do that,  we have to keep in mind that
the end of our life comes closer every breath we take and we have to make
every moment special is some way.

Let's not be too hard on Dr. Laura.  She is doing her best to swing the
moral pendulum in our country back where it belongs.

Regards

Fred Windbeck, (David 31, del+) Silver Spring, Md.

Fred Windbeck (David 31, del+) Silver Spring, Md.

DELETE angelman-l

(here is the transcript of denise's conversation with dr. laura, from FEAT)
>Dr. Laura Advises Mom to Dump her Autistic Child
>Thursday, July 29, 1999
>
>Prominent radio talk show host Dr. Laura Schlessinger today advises a
mother
>with an autistic child to place her child in an institution so that she can
>"have a life."
>
>A disabilities legal advocate who happened to be listening today sends in
>this report:
>
>A mother calls Dr. Laura for an answer to one question, "Should I go to my
>father's birthday party?"  Her "moral dilemma" was that her husband did not
>think they should go anywhere they could not take their child with autism.
>
>Her answer is, "Yes."  "Buy yourself a nice dress, and have a nice time at
>dinner tomorrow night, maybe one of the few nice times you've had at dinner
>in 8 years. And that's fair."  Her answer was also "There's nowhere you can
>take this kid. There is no place."  Then incredibly, Dr. Laura recommends
>that mother should just put her kid in an institution so she can spend more
>time with the rest of the family.
>
>(Go to http://www.broadcast.com/premrad/shows/drlaura/jul.stm
>Click on the July 29 show.  If you have RealPlayer, move the slide on the
>tape player to 1:42 and you'll be just about at the beginning of the
>sequence.)
>
>Here is a close transcript of that segment:
>
>DR. LAURA: Denise.  Welcome to the program.
>
>DENISE: Hi, Dr. Laura.  I am my kids' Mom.   I have three children, 6, 8
and
>10 and my middle son has autism.  He's a non-verbal autistic child, and
>we've been going through about 10 weeks of some real severe behavior
>problems with him where he has just gone from doing so well to this
complete
>regression.
>
>DR. LAURA: Do they have any idea why?  Any rhyme or reason to these things.
>
>DENISE:  We're working on it, we have an appointment with doctors and all
>...  And it's just so difficult, I just can't describe it.
>
>DR. LAURA: Is there much left of you for the 6 and 10 year old?
>
>DENISE:  No.   They're right now with my grandparents, my, my in-laws
>...(Talks about sending other children to the grandparents) ... and you
>know, my parents are worried about me.  (Breaks down ... "so sorry.")
>
>DR. LAURA: Right now, I'm worried about you, too.
>
>DENISE: My father's birthday is today and he's having a birthday party
>tomorrow, and he has invited  all the  family to a very nice restaurant
>where right now its just not feasible and they know that, and they want ...
>
>DR. LAURA: Denise, Denise, I'm going to say something now that you need to
>hear.  You need to have a life aside from this torture.  You need to have a
>life aside from this.  Your family needs to have a life aside from this.  I
>suspect you've done more than is humanly possible.  There are responsible
>people who are specifically trained to deal with very difficult kids with
>very serious problems like your son has.  Let them baby-sit so you can go
>out and have a life sometimes.
>
>DENISE: And that's okay.
>
>DR. LAURA: No, no, it's not only okay.  Your 6 year old and your 10 year
old
>deserve it. They are losing out because they're okay. Your husband is
losing
>out because he's okay. You're losing out because you're okay.
>
>DENISE: No, he didn't want to go.  He felt if we couldn't go somewhere
where
>we all could go ...
>
>DR. LAURA: There is nowhere you can bring this kid.  There is no place. And
>that's not fair to the family.  And this is what I call unreasonable guilt.
>There is reasonable guilt you kicked me in the shins, you should say you're
>sorry.  This is unreasonable guilt.  But I feel like we're leaving him out.
>
>DR. LAURA: That's correct.  You are.  When it's appropriate you leave him
>out..  If your husband was a falling down drunk they might ask you to leave
>him home, too. And I would say, That's reasonable.   Yes, You are
reasonably
>leaving him out so all of you can have a decent life.  Everyone is involved
>and invested.  Everyone has spent an inordinate amount of time and an
>inordinate amount of money, an inordinate amount of stress.  I bet you get
>every bug that goes around.
>
>DENISE: Yes.
>
>DR. LAURA:  Yes, I know.  I can hear that.  You have to give yourself
>permission to have a life apart from that.  And you know, Denise, this may
>not be fixable
>
>DENISE: What's that?
>
>Dr. Laura: Your son may not be fixable.  In which case you're going to have
>to think of some kind of placement.  He might even become dangerous to
>himself or somebody else -- and that's  not going to be unreasonable either
>because he would be in a more controlled environment where there are
experts
>in dealing with him.
>
>DENISE: We just don't know what happened to him.
>
>DR. LAURA: Well, you know it has nothing to do with Mommy.  You understand
>that, don't you.  Autism has nothing to do with whether you're a bitch or
>too sweet.  It's an error.  Something is wrong in the head.  Some people
>with milder versions ...  Extraordinary things can be done, but some people
>have serious problems and it compounds, and it can't be fixed...  So at
some
>point you have to think about alternative situations so this family can
have
>a life and please that's fair to everyone.
>
>DENISE: That's what my family has been saying. And that's not abandonment.
>That's appropriate placement.  There's a difference.  One visits,  One does
>stuff, one takes the kid home sometimes on holidays, you go on little
>expeditions, bring him little gifts, whatever he's capable of experiencing
>and enjoying and functioning in.  But don't beat yourself over the head.
>Buy yourself a nice dress, and have a nice time at dinner tomorrow night,
>maybe one of the few nice times you've had at dinner in 8 years. And that's
>fair.
>
>DENISE: Thank you, Dr. Laura.
>
>DR. LAURA: I'm really sorry.  I think you folks have gone above and beyond.
>Not everything can be fixed.
>
>DENISE: But we're going to try to help him as much as we possibly can.
>
>DR. LAURA: That's right, and that may mean a different setting...
>
>DENISE: I don't want to go there yet.
>
>DR. LAURA: Well, don't forget other kids suffer from lack of attention, and
>that's no less serious.
>
>DENISE: It's such a terrible balance.
>
>DR. LAURA: Yes.  But you understand that these are normal kids who need
some
>semblance of a normal family life.  They are going to go out into the world
>and do the important things in the world.  And if they're not given their
>best opportunity, then we're losing three.  And its not abandonment, it's
>just apportioning the time and effort.
>* * *
>
>If you would like to dispel some of this ignorance you can call Dr. Laura
>tomorrow and Monday from Noon to 3 pm Pacific time, 3 pm to 6 pm Eastern,
>not in an angry or demanding way, but politely asking questions about the
>moral dilemmas that face parents of children with autism, mental
>retardation, other disabilities  -- asking her what to do about any
>particular problem that you face every day in trying to give your children
a
>boost into actualized lives.  But most of all, demonstrate your commitment
>to your child in no uncertain terms.  Parents here can provide a real
>education opportunity.
>
>Put it on your calendar.  Call:  1-800-DRLAURA between 3pm and 6 pm
Eastern,
>12 and 3 Pacific Time tomorrow and next Monday.  Write back and let us know
>what happens.
>
>Dr. Laura Schlessinger
>c/o Premiere Radio Networks, 15260 Ventura Blvd.,
>Ste. 500, Sherman Oaks, Ca. 91403
>Fax:  818-461-5140
>____________________________________________________________
>editor: Lenny Schafer         east coast editor: Catherine Johnson, Ph.D.
>schafer@...                                        CIJOHN@...
>         *****    WHY  YOU  MAY  WANT  TO  SUBSCRIBE  TO   *****
>The FEAT Daily Online Newsletter: Daily we collect features and news of
>the world of autism as it breaks. (no cost): http://www.feat.org/FEATNews
>