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

Hey and don't forget one for the gipper. Chris
--- "Kevin R. Phillips" <kevin@...>
wrote:
>
> If you called him "Snipper" people might leave you
> alone. "Ripper" works too.
> Kev
>
> ******************************
>
> >Hello folks,
> >        I hate to beat a dead dolphin but I just
> wanted to answer this
> >question.
> >
> >Where did I get a my dog's name, Flipper?
> >
> >
> >        The guide dog schools name your dogs.
> Each litter of potential
> >guides are named from a letter of the alphabet.
> This helps them keep track
> >of the dogs.  Flipper was from the "F" litter.
> His sibs were names like
> >"Fenway", "Fossil", "Frannie" and <yikes> "Fannie."
> >
> >        You have the option of changing the dogs
> name but it should be
> >somewhat similar to the original name.  This is
> because the dogs were
> >trained with this name and it could be confusing to
> change it.   I hated
> >Flipper's name at first.   But I didn't like the
> alternative.  "Tripper"
> >reminded me too much of my white cane use.
> "Tipper", don't get me started,
> >Clipper" sounds like a beautician's dog, and then
> the one that I almost went
> >with was "Zipper."   Then I got to thinking.
> Going into a public restroom
> >and then saying "Zipper, sit!"  "Zipper, stay!"
> "Good boy, Zipper!"   "Stay
> >down Zipper!"
> >
> >        The name Flipper kind of grew on me and now
> I pretty much like it.
> >I usually call him Flip when we are working.   Lena
> says that his name is
> >Flipper because he flips.
> >
> >        Flipper is a 5 yr old yellow lab (almost
> caramel color) with
> >matching eyes.   I've been told he is a handsome
> dog.   And Beth, I have a
> >coworker who hums the old TV series theme song and
> it is getting quite
> >irritating! =)
> >
> >        NOTE:   Flipper does not do forms but he is
> always available to
> >clean the face of any angel post mealtime!
> >
> >See ya and thanks for the time,
> >
> >Tony Edwards
> >Husband of Peg and daddy of Lena (7.2), Ian (5.11)
> clinn AS and Victoria (3)
> >Florissant Missouri
> >-----Original Message-----
> >From: KAYLEYWD@... [mailto:KAYLEYWD@...]
> >Sent: Saturday, June 10, 2000 8:43 PM
> >To: Yvonne97@...; angelman-l@...
> >Subject: Re: Flipper... (silly-- delete if you're
> not in the mood)
> >
> >
> >In a message dated 06/10/2000 4:46:20 PM Eastern
> Daylight Time,
> >Yvonne97@... writes:
> >
> ><<  So Flipper says he is willing
> > to fill out our forms for a very reasonable fee.
> Send your forms and ALL
> >of
> > your table scraps to Flipper, c/o Tony Edwards, --
> what is your address
> >again
> > Tony? >>
> >
> >You know, with all this silliness going on I have
> to point out just one
> >thing
> >about Flipper that's been on my mind a lot lately.
> >
> >(I'll probably be bashed on the head with a huge
> dog bone for this, but here
> >
> >goes anyway...)   I have this visual image of
> Flipper.  He's dark and shiny
> >and wet and he's eating raw fish thrown off a dock.
>  Who in the world would
> >name a DOG Flipper????  I have that old tv show
> intro running through my
> >head
> >every time I hear Flipper's name.  And poor
> Flipper! Tony, has his bark
> >changed at all?  I think if his bark starts to take
> on seal/sea lion
> >qualities, you should really consider changing his
> name.  LOL.
> >
> >All in good fun, you guys know I love you...and
> yes, Flipper, I love you
> >too.
> >
> >Beth
> >Kayla 4.10
> >Maryland
>
>


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In a message dated 06/12/2000 5:45:38 PM Eastern Daylight Time,
alindig@... writes:

<< Hi Alison,
  Welcome to our list...We have a lot of newcomers lately...this is good
  that so many doctors are recognizing AS...although, not so good for
  families just discovering the extent of their child's delays and
  symptoms.  I know you will find comfort, friendship, and humor here.
  Where are you from?  Perhaps you will also find someone in your area
  right here on the list:-)  PS:  Cute email name! >>

Yes, Alison, welcome to the list.  You do have a cute name.  Hey, did anyone
out there think this was another of Tomi's screennames?  I did.  LOL...

Beth
Mom to Kayla 4.10
Maryland

In a message dated 06/12/2000 5:03:42 PM Eastern Daylight Time,
neal33@... writes:

<< Beth, Mom to Zach....Whose first name is "Vermond"(my Grandfather, Dad &
  Brother's first names also).......talk about the razzing that I have taken
  for that one..=) >>

Now THAT is an unusual name!

Beth
Mom to Kayla

Penny, Calgary

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
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---

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

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.

amy, do you know about that?  i talked to one of the local activist moms and
she said that the district should provide at least 7 weeks, and full day.
our usual school day is 8:30 to 2:30, but summer school is only 8 to 12:30.

also, some people have gotten the district to pay for the aide during the
breaks when school is not in session.

lulu
-----Original Message-----
>Mikylie@... wrote:
>
>> Kim-
>> providing summer services and it always just amazes me. Ever since Kylie
>> started school at age 3, she's always had ESY. It's never even been
>> second-guessed by anyone--- not teachers, administrators or therapists.
And
>> we've been in 4 different school districts in that time! (I used to be
>> military). They can NOT determine that Nicholas will not regress over a
>> 3-month summer break based on his performance after a one-week break!
That's
>> not even close to the same thing! You need to fight it. I'd call the
school
>> district and say you want an emergency ARD and NOW!! Then I'd gather all
the
>> online ammunition I could in the form of letters from other parents
and/or
>> anything off any of the AS websites. Then, I would even call the school
>> superintendant and let him know how unfairly you've been treated and that
you
>> are fully aware of Nicholas's rights ---- but do all this in a very nice
>> voice-- remember, you can catch more flies with honey than with vinegar!
Be
>> firm but sweet.
>>
>> Anyway, that's just my take on the whole thing....it should NOT be left
up to
>> you to have to find something for your child for the summer-- the school
>> district should be upholding their responsibility to your son! It is
>> ridiculous to assume that he would not regress over the whole summer just
>> because he did fine over the one-week-long spring break! I can't believe
>> they're even suggesting that. They have to consider physical (fine motor,
>> gross motor, self-help skills) and social skills (behaving in class,
getting
>> along with other kids, attention span, etc.) when they are determining
wether
>> or not he would regress....and things like pottying (if he's doing that)
and
>> you need to emphasize that he's NOT your only child and that he doesn't
get
>> outside therapy-- that you can't devote every second of every day to him
to
>> ensure that he does not regress-- it's impossible. They simply need to
take
>> responsibility. Maybe if they see it more as a cry for help instead of an
>> accusation of unfairness then they'll reconsider their decision. I don't
>> know for sure what angle to take on it....the thing is, they shouldn't
have
>> put you in this position to have to ask them! But then, what am I saying?
We
>> nearly ALWAYS have to fight for what our kids need, right? It's nuts!
>> Good luck, and stick to your guns!
>> Amy U.
>> Mom to Mikala (nearly 9), Kylie (6 and a half, AS+), and Bailey (almost
2).
>> San Antonio, TX (Formerly of Danville, IL)
>
>
>
>

Hi Traci,
I live in Houston.  My son is Aaron  he is 3 del+.  I have friends in the
Dallas
area maybe some day when I am visiting them we could meet up.
Thanks

Sandy

________________________________________________________________
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Hi,
I'm wondering what other angels live in Texas. We're
from texas, around Dallas. Anyone near us?

Traci and cody

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In a message dated 6/12/00 7:17:12 PM Central Daylight Time, NJuenke@...
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.


Cindy Spicka, wife to Glenn, mom to Bobby 11 ube3a and Andrew 8
Oak Forest, IL

Dear Alison,
Welcome to the list.  What testing have you undergone wih samuel?  This
list can help you so much and  I really hope it gives you as much peace
of mind as I get with all the help you receive. I don't know how I made
it before!!

Denise
Mother of Hannah 5.3 quad non

In a message dated 06/11/2000 9:49:21 PM Eastern Daylight Time,
ronylu@... writes:

<< i have no idea really, but it seems to me that your mom is on the mark.
  find out about the new teacher and forget strickland.  she's history.
  i'm happy for you!  here's to a good teacher.  it happened to us, too.  we
  went from the worst possible teacher to a really wonderful one.  and it's
  made such a difference to our whole family. >>

Mom's advice seems good to me too.  Maybe if she (Strickland) moves on she
can start anew with a fresh outlook and maybe be much better in another
school.  But I would definitely get all the info I can about the new teacher.

D

Note: forwarded message attached.
This my Angel cody, hope you don't mind me sending
this.
Traci, mom of cody(3)
Texas

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Laura Bee wrote:

> Pen wrote:
> >Maybe there is still hope for us in a bit.  I made a recent new attempt,
> >but after>a few tries, Ian started to really stiffen up everytime I tried
> >to put him on the>chair, and my back bore the brunt of it, so we have given
> >up for a while.>
>
> Dear Pen,
>
> I know this might sound stupid, but if Ian rears back when on the
> toilet...howwa bout trying him peeing while standing up?  Would this be a
> possibility.  Then he would be at your level and you could stand behind him
> and guide the aim of the pee.

- oh. I was thinking  have two potty chairs facing each other, and then I would
have to move fast to avoid getting peed on!

> Maybe a thought?  I don't know what Ian's
> attention level is, but thought maybe I'd mention it.
>  

Good thought, Beez.  Unfortunately, right now he seizes often in that arched
back position, but if we EVER get there drugwise, I'll get back to that thought.
(More on the drug stories later).Penny

> Beez (Max, 3, + and Simon)
> ________________________________________________________________________
> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

 

Hi everyone, I was just wondering how many angels live
in Texas.We are from texas, near Dallas,and was just
wondering if any of you live near by? Please respond.

Thanks,Traci,mom of cody(3)

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Hi Amy, good to hear from you!  (especially in motherfromhell mode :-)

I'm from Canada, and I am so amazed that you have enabled your schools to
recognise some responsibility for kids off the school grounds after school is
over for the summer!  Ours are 15 years away from that. (and only if someone
starts right now!)    Bill, do you think we should get someone to fight this
battle?  I swear it has taken a year off my life expectancy to deal with summer,
and we've only made it to junior high so far!

Hope it's ok, listsurfers, but I just inserted Bill in here for a moment.  He's
not a spying school district.  He is a really great advocate for the disabled,
and I am going to plague him for the rest of his life expectancy with
suggestions
for worthwhile projects that I can't take on at the moment!

Penny (Ian 13.4 UPD) Calgary Alberta

Mikylie@... wrote:

> Kim-
> First of all, this is appalling to me!  I've heard (I think) of some other
> angels who's school district has the balls to try and weasel their way out of
> providing summer services and it always just amazes me.  Ever since Kylie
> started school at age 3, she's always had ESY.  It's never even been
> second-guessed by anyone--- not teachers, administrators or therapists.  And
> we've been in 4 different school districts in that time! (I used to be
> military).  They can NOT determine that Nicholas will not regress over a
> 3-month summer break based on his performance after a one-week break!  That's
> not even close to the same thing!  You need to fight it.  I'd call the school
> district and say you want an emergency ARD and NOW!!  Then I'd gather all the
> online ammunition I could in the form of letters from other parents and/or
> anything off any of the AS websites.  Then, I would even call the school
> superintendant and let him know how unfairly you've been treated and that you
> are fully aware of Nicholas's rights ---- but do all this in a very nice
> voice-- remember, you can catch more flies with honey than with vinegar!   Be
> firm but sweet.
>
> Anyway, that's just my take on the whole thing....it should NOT be left up to
> you to have to find something for your child for the summer-- the school
> district should be upholding their responsibility to your son!  It is
> ridiculous to assume that he would not regress over the whole summer just
> because he did fine over the one-week-long spring break!   I can't believe
> they're even suggesting that.  They have to consider physical (fine motor,
> gross motor, self-help skills) and social skills (behaving in class, getting
> along with other kids, attention span, etc.) when they are determining wether
> or not he would regress....and things like pottying (if he's doing that) and
> you need to emphasize that he's NOT your only child and that he doesn't get
> outside therapy-- that you can't devote every second of every day to him to
> ensure that he does not regress-- it's impossible.  They simply need to take
> responsibility.  Maybe if they see it more as a cry for help instead of an
> accusation of unfairness then they'll reconsider their decision.  I don't
> know for sure what angle to take on it....the thing is, they shouldn't have
> put you in this position to have to ask them!  But then, what am I saying? We
> nearly ALWAYS have to fight for what our kids need, right? It's nuts!
> Good luck, and stick to your guns!
> Amy U.
> Mom to Mikala (nearly 9), Kylie (6 and a half, AS+), and Bailey (almost 2).
> San Antonio, TX (Formerly of Danville, IL)

 

The school that he goes to uses the>Foxx&Azrin method and feel confident
that they will potty train him so what
>do I have to lose!

Okay Deb, spill....what the heck is the Foxx Azrin method of pee pee?

Bee bee
________________________________________________________________________
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Obviously if someone has court cases going on, it might be a concern, but for
me, if they want to listen in without announcing themselves, then they can
listen away!  Maybe they will learn a few things.  In fact, if I thought Ian's
school was listening in (or is that reading in?), I would make a point of saying
that I am amazed that someone with so much special ed experience still hasn't
learned that we need three weeks notice to plan for things like camping trips
and last minute school cancellations and what the actual schedule will be for
the last week of school (would you believe just two half days?).

Penny (Ian 13.4 UPD) Calgary Canada, working mother and child care organiser.

NJuenke@... wrote:

> 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.
>
> Norma Juenke

 

Pen wrote:
>Maybe there is still hope for us in a bit.  I made a recent new attempt,
>but after>a few tries, Ian started to really stiffen up everytime I tried
>to put him on the>chair, and my back bore the brunt of it, so we have given
>up for a while.>


Dear Pen,

I know this might sound stupid, but if Ian rears back when on the
toilet...howwa bout trying him peeing while standing up?  Would this be a
possibility.  Then he would be at your level and you could stand behind him
and guide the aim of the pee.  Maybe a thought?  I don't know what Ian's
attention level is, but thought maybe I'd mention it.

Beez (Max, 3, + and Simon)
________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

You know, I think it's time the two of you took your show on the road!  You
crack
me up and I thank you for that!

Penny (Ian 13.4 UPD) Calgary Canada

Kevin R. Phillips wrote:

> If you called him "Snipper" people might leave you alone. "Ripper" works too.
> Kev
>
> ******************************
>
> >Hello folks,
> >        I hate to beat a dead dolphin but I just wanted to answer this
> >question.
> >
> >Where did I get a my dog's name, Flipper?
> >
> >
> >        The guide dog schools name your dogs.   Each litter of potential
> >guides are named from a letter of the alphabet.  This helps them keep track
> >of the dogs.  Flipper was from the "F" litter.   His sibs were names like
> >"Fenway", "Fossil", "Frannie" and <yikes> "Fannie."
> >
> >        You have the option of changing the dogs name but it should be
> >somewhat similar to the original name.  This is because the dogs were
> >trained with this name and it could be confusing to change it.   I hated
> >Flipper's name at first.   But I didn't like the alternative.  "Tripper"
> >reminded me too much of my white cane use.   "Tipper", don't get me started,
> >Clipper" sounds like a beautician's dog, and then the one that I almost went
> >with was "Zipper."   Then I got to thinking.   Going into a public restroom
> >and then saying "Zipper, sit!"  "Zipper, stay!"  "Good boy, Zipper!"   "Stay
> >down Zipper!"
> >
> >        The name Flipper kind of grew on me and now I pretty much like it.
> >I usually call him Flip when we are working.   Lena says that his name is
> >Flipper because he flips.
> >
> >        Flipper is a 5 yr old yellow lab (almost caramel color) with
> >matching eyes.   I've been told he is a handsome dog.   And Beth, I have a
> >coworker who hums the old TV series theme song and it is getting quite
> >irritating! =)
> >
> >        NOTE:   Flipper does not do forms but he is always available to
> >clean the face of any angel post mealtime!
> >
> >See ya and thanks for the time,
> >
> >Tony Edwards
> >Husband of Peg and daddy of Lena (7.2), Ian (5.11) clinn AS and Victoria (3)
> >Florissant Missouri
> >-----Original Message-----
> >From: KAYLEYWD@... [mailto:KAYLEYWD@...]
> >Sent: Saturday, June 10, 2000 8:43 PM
> >To: Yvonne97@...; angelman-l@...
> >Subject: Re: Flipper... (silly-- delete if you're not in the mood)
> >
> >
> >In a message dated 06/10/2000 4:46:20 PM Eastern Daylight Time,
> >Yvonne97@... writes:
> >
> ><<  So Flipper says he is willing
> > to fill out our forms for a very reasonable fee.  Send your forms and ALL
> >of
> > your table scraps to Flipper, c/o Tony Edwards, -- what is your address
> >again
> > Tony? >>
> >
> >You know, with all this silliness going on I have to point out just one
> >thing
> >about Flipper that's been on my mind a lot lately.
> >
> >(I'll probably be bashed on the head with a huge dog bone for this, but here
> >
> >goes anyway...)   I have this visual image of Flipper.  He's dark and shiny
> >and wet and he's eating raw fish thrown off a dock.  Who in the world would
> >name a DOG Flipper????  I have that old tv show intro running through my
> >head
> >every time I hear Flipper's name.  And poor Flipper! Tony, has his bark
> >changed at all?  I think if his bark starts to take on seal/sea lion
> >qualities, you should really consider changing his name.  LOL.
> >
> >All in good fun, you guys know I love you...and yes, Flipper, I love you
> >too.
> >
> >Beth
> >Kayla 4.10
> >Maryland

 

Hi Alison.  I love and hate your email name!  Welcome to the list, and I
can believe you are tired! (me too, just one child, but I am 50ish).   I
have a 13 year old with Angelman Syndrome.  We only got the diagnosis three
years ago.  I think it really helps to have the specifics a lot earlier.  I
understand his strengths and weaknesses so much better.  This is a great
list for support and entertainment.  I really think that it is special
people who have children with rare disorders, although I'm not sure which
comes first ;-)

Angelman Syndrome children are generally very unique and very loveable. 
The diagnosis at an early age is better, but I recognise how tough it is to
deal with a diagnosis of disability.  .  I know that it took me a long time
to get over Ian's diagnosis of Cerebral Palsy, but I am having a lot more
fun now that he has AS!

This is a place where you can learn a lot, share your joys and sorrows, and
weep, wail or gnash your teeth with impunity and we will understand because
we're sharing the same journey.  I look forward to hearing more about your
Samuel.  Does he spit up?  Does he sleep?  Does he straighten his elbows
and hold his hands together with the wrists cocked like a Victorian heroine
when he laughs?  Does he cross his legs when he sits?  Does he drool?

You've come to the right place!
 

Penny (Ian 13.4 UPD) Calgary Canada

Ali 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.

 

In a message dated 6/12/00 2:43:00 AM, neal33@... writes:

<< What is the Foxx&Azrin Method?

Thanks,

Beth, Mom to Zach >>

The authors of the book "Toilet Training Persons with Developmental
Disabilities" is Richard M. Foxx,Ph.D. and Nathan H. Azrin, Ph.D., It is a
very old book, published in 1973.

Basically they say anyone can be toilet trained but it is a very intense
program.  They wrote the book using examples of how they trained profound
mentally handicapped residents in a state ward.  It took them about 8 days to
train a 46 year old man who had never gone on the toilet before.  Granted,
those 8 days sound pretty horrible.  When the training starts everything
revolves around toileting.  You give them lots of fluid and give them salty
foods.  You continually take them to the toilet and make them sit for about
20 minutes and keep checking them for dry or wet underwear.  If they urinate
on the toilet they get rewarded and if they have an accident there is a
correction that takes place.  Since I haven't started it I'm not real sure of
the details.

I will keep you updated.


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

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

 

my son daniel has what is called drop seizures.  he just falls not much of
anything else.  He is on depakote for this.
Mickey  mom to daniel  9yrs  UPD

In a message dated 6/12/00 2:22:10 PM Central Daylight Time,
TONY.EDWARDS@... writes:

<< Flipper is a 5 yr old yellow lab (almost caramel color) with
  matching eyes.   I've been told he is a handsome dog.   >>

Hi Tony and all--
I can definitely vouch for Flipper here-- he is a VERY handsome dog.  (think
it runs in the family-- wink, wink) ;o)  We have the most adorable picture of
our youngest (Bailey) with Flipper at one of our Angelman Picnics-- she's
kissing him on the mouth (and boy is he kissing her back!) :o)  She was about
one year at the time!  Soooooo cute!
Your pal,
Amy U.

>
>  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?
>Terry,  mom to Mandy and 3 more

Medicaid will not pay for it but the school will.  When Ayla was in
pre-school and sickly (lungs), the PT convinced me to have her IEP written
for the following year only attending school 2 days a week instead of
4.  She thought Ayla did so much more at home than at school, we had a
lousy teacher too.
The IEP can be written for whatever is best for your child, if that means
learning at home, they should be able to accommodate you.
The next school year we had a new and wonderful teacher, Ayla was healthier
and we soon modified the IEP to send her all 4 days.
However much therapy she is scheduled for in the classroom would be done at
home.
Good Luck!
Sandy Ayla's mom in VA
Sandy

Kim-
First of all, this is appalling to me!  I've heard (I think) of some other
angels who's school district has the balls to try and weasel their way out of
providing summer services and it always just amazes me.  Ever since Kylie
started school at age 3, she's always had ESY.  It's never even been
second-guessed by anyone--- not teachers, administrators or therapists.  And
we've been in 4 different school districts in that time! (I used to be
military).  They can NOT determine that Nicholas will not regress over a
3-month summer break based on his performance after a one-week break!  That's
not even close to the same thing!  You need to fight it.  I'd call the school
district and say you want an emergency ARD and NOW!!  Then I'd gather all the
online ammunition I could in the form of letters from other parents and/or
anything off any of the AS websites.  Then, I would even call the school
superintendant and let him know how unfairly you've been treated and that you
are fully aware of Nicholas's rights ---- but do all this in a very nice
voice-- remember, you can catch more flies with honey than with vinegar!   Be
firm but sweet.

Anyway, that's just my take on the whole thing....it should NOT be left up to
you to have to find something for your child for the summer-- the school
district should be upholding their responsibility to your son!  It is
ridiculous to assume that he would not regress over the whole summer just
because he did fine over the one-week-long spring break!   I can't believe
they're even suggesting that.  They have to consider physical (fine motor,
gross motor, self-help skills) and social skills (behaving in class, getting
along with other kids, attention span, etc.) when they are determining wether
or not he would regress....and things like pottying (if he's doing that) and
you need to emphasize that he's NOT your only child and that he doesn't get
outside therapy-- that you can't devote every second of every day to him to
ensure that he does not regress-- it's impossible.  They simply need to take
responsibility.  Maybe if they see it more as a cry for help instead of an
accusation of unfairness then they'll reconsider their decision.  I don't
know for sure what angle to take on it....the thing is, they shouldn't have
put you in this position to have to ask them!  But then, what am I saying? We
nearly ALWAYS have to fight for what our kids need, right? It's nuts!
Good luck, and stick to your guns!
Amy U.
Mom to Mikala (nearly 9), Kylie (6 and a half, AS+), and Bailey (almost 2).
San Antonio, TX (Formerly of Danville, IL)

Hi Alison,

Welcome to the list.  I am new on here and getting a lot of good
information.
I would like to hear more about your son.  Things he is doing and so on.

Sandy
Houston, Tx Mom to Aaron 3 del+ and Erica 4

________________________________________________________________
YOU'RE PAYING TOO MUCH FOR THE INTERNET!
Juno now offers FREE Internet Access!
Try it today - there's no risk!  For your FREE software, visit:
http://dl.www.juno.com/get/tagj.

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.

Norma Juenke

Terry,
I could not even imagine going 9 years with out a dx or the correct one.
Aaron was dx at 18 months and is only 3, but you have described him to a
T.
I was also told by a group of Therapist that he was at his peak.  They
were
so wrong.  He is getting more extensive therapy and doing better.  It's a
slow
progression, but he is definitely doing so.  He just started school in
late April
He goes 5 days a week 7 hours a day.  He is so tired by the end of the
day.
The therapy is getting very hard for him.  I wish you could either cut
the days
of school or at least get extensive therapy part of the school hours.
What state do you live in?  As far as I know Medicaid will pay for any
Therapy
your Dr. recommends.  The problem I have found is in public Therapy ,
they are
very limited.   This school thing is new to me Aaron is my first child to
start.
In public school, do you even have a choice about how many days or hours
they
go?  I was told what his schedule would be not asked. I'm know expert by
any
means I could probably  learn more from you since you do have over 9
years
experience.

Sandy
Houston, Tx  Mom to Aaron 3 del+ and Erica 4

________________________________________________________________
YOU'RE PAYING TOO MUCH FOR THE INTERNET!
Juno now offers FREE Internet Access!
Try it today - there's no risk!  For your FREE software, visit:
http://dl.www.juno.com/get/tagj.

If you called him "Snipper" people might leave you alone. "Ripper" works too.
Kev

******************************

>Hello folks,
>        I hate to beat a dead dolphin but I just wanted to answer this
>question.
>
>Where did I get a my dog's name, Flipper?
>
>
>        The guide dog schools name your dogs.   Each litter of potential
>guides are named from a letter of the alphabet.  This helps them keep track
>of the dogs.  Flipper was from the "F" litter.   His sibs were names like
>"Fenway", "Fossil", "Frannie" and <yikes> "Fannie."
>
>        You have the option of changing the dogs name but it should be
>somewhat similar to the original name.  This is because the dogs were
>trained with this name and it could be confusing to change it.   I hated
>Flipper's name at first.   But I didn't like the alternative.  "Tripper"
>reminded me too much of my white cane use.   "Tipper", don't get me started,
>Clipper" sounds like a beautician's dog, and then the one that I almost went
>with was "Zipper."   Then I got to thinking.   Going into a public restroom
>and then saying "Zipper, sit!"  "Zipper, stay!"  "Good boy, Zipper!"   "Stay
>down Zipper!"
>
>        The name Flipper kind of grew on me and now I pretty much like it.
>I usually call him Flip when we are working.   Lena says that his name is
>Flipper because he flips.
>
>        Flipper is a 5 yr old yellow lab (almost caramel color) with
>matching eyes.   I've been told he is a handsome dog.   And Beth, I have a
>coworker who hums the old TV series theme song and it is getting quite
>irritating! =)
>
>        NOTE:   Flipper does not do forms but he is always available to
>clean the face of any angel post mealtime!
>
>See ya and thanks for the time,
>
>Tony Edwards
>Husband of Peg and daddy of Lena (7.2), Ian (5.11) clinn AS and Victoria (3)
>Florissant Missouri
>-----Original Message-----
>From: KAYLEYWD@... [mailto:KAYLEYWD@...]
>Sent: Saturday, June 10, 2000 8:43 PM
>To: Yvonne97@...; angelman-l@...
>Subject: Re: Flipper... (silly-- delete if you're not in the mood)
>
>
>In a message dated 06/10/2000 4:46:20 PM Eastern Daylight Time,
>Yvonne97@... writes:
>
><<  So Flipper says he is willing
> to fill out our forms for a very reasonable fee.  Send your forms and ALL
>of
> your table scraps to Flipper, c/o Tony Edwards, -- what is your address
>again
> Tony? >>
>
>You know, with all this silliness going on I have to point out just one
>thing
>about Flipper that's been on my mind a lot lately.
>
>(I'll probably be bashed on the head with a huge dog bone for this, but here
>
>goes anyway...)   I have this visual image of Flipper.  He's dark and shiny
>and wet and he's eating raw fish thrown off a dock.  Who in the world would
>name a DOG Flipper????  I have that old tv show intro running through my
>head
>every time I hear Flipper's name.  And poor Flipper! Tony, has his bark
>changed at all?  I think if his bark starts to take on seal/sea lion
>qualities, you should really consider changing his name.  LOL.
>
>All in good fun, you guys know I love you...and yes, Flipper, I love you
>too.
>
>Beth
>Kayla 4.10
>Maryland