Hi Kerry:

I am keeping my children at home and plan to home school, but they
are only ages 4 and 5, so I have not formally filled out the
paperwork to home school.

Trevor still has no expressive language skills, so I am reluctant to
send him anywhere, plus the social services and school system in
Arizona are horrible. I hope we will be able to move out of state,
but i am just beginning to look at other states.

Regradless of where we live, i still plan to home school, though i
heard that some states have much harder cirriculum requirements than
others. there are many websites about home schooling and lots of
resources available. Where do you live?

My daughter is also showing problems with sensory integration and
possibly Aspergers. both children require a lot of time and help.
Trevor's dx of Autism has become axis 1 and PWS UPD as axis 2. He
just had a psych eval and is very low- functioning with a global
assessment of 10. He cannot even brush his own teeth or get dressed
unassisted. I do not know how he compares to other children with the
dual dx, but i am interested in hearing. Trevor is also still not
toilet trained and has no body awareness.


--- In pws-autism@yahoogroups.com, "Kerry Headley" <k.headley@...>
wrote:
>
> Hi Everyone,
>
> I've been thinking lately about education/school options for my son
> J.R. who is almost 8.  I'd love to hear what everyone is doing
> regarding elementary and middle-school programming options.
>
> J.R. is still in kindergarten right now (second time) and I'm
trying
> to map out a plan for the next few years for him.  I love the
school
> he's attending right now but want to explore a home tutoring/school
> day blend.  I'm just a little concerned how he'll do with a full-
day
> at school.
>
> Looking forward to hearing from everyone.
>
>
> Kerry, Mom to J.R.
>

Hi Kerry:

I am keeping my children at home and plan to home school, but they
are only ages 4 and 5, so I have not formally filled out the
paperwork to home school.

Trevor still has no expressive language skills, so I am reluctant to
send him anywhere, plus the social services and school system in
Arizona are horrible. I hope we will be able to move out of state,
but i am just beginning to look at other states.

Regradless of where we live, i still plan to home school, though i
heard that some states have much harder cirriculum requirements than
others. there are many websites about home schooling and lots of
resources available. Where do you live?

My daughter is also showing problems with sensory integration and
possibly Aspergers. both children require a lot of time and help.
Trevor's dx of Autism has become axis 1 and PWS UPD as axis 2. He
just had a psych eval and is very low- functioning with a global
assessment of 10. He cannot even brush his own teeth or get dressed
unassisted. I do not know how he compares to other children with the
dual dx, but i am interested in hearing. Trevor is also still not
toilet trained and has no body awareness.


--- In pws-autism@yahoogroups.com, "Kerry Headley" <k.headley@...>
wrote:
>
> Hi Everyone,
>
> I've been thinking lately about education/school options for my son
> J.R. who is almost 8.  I'd love to hear what everyone is doing
> regarding elementary and middle-school programming options.
>
> J.R. is still in kindergarten right now (second time) and I'm
trying
> to map out a plan for the next few years for him.  I love the
school
> he's attending right now but want to explore a home tutoring/school
> day blend.  I'm just a little concerned how he'll do with a full-
day
> at school.
>
> Looking forward to hearing from everyone.
>
>
> Kerry, Mom to J.R.
>

Hi Kerry:

I am keeping my children at home and plan to home school, but they
are only ages 4 and 5, so I have not formally filled out the
paperwork to home school.

Trevor still has no expressive language skills, so I am reluctant to
send him anywhere, plus the social services and school system in
Arizona are horrible. I hope we will be able to move out of state,
but i am just beginning to look at other states.

Regradless of where we live, i still plan to home school, though i
heard that some states have much harder cirriculum requirements than
others. there are many websites about home schooling and lots of
resources available. Where do you live?

My daughter is also showing problems with sensory integration and
possibly Aspergers. both children require a lot of time and help.
Trevor's dx of Autism has become axis 1 and PWS UPD as axis 2. He
just had a psych eval and is very low- functioning with a global
assessment of 10. He cannot even brush his own teeth or get dressed
unassisted. I do not know how he compares to other children with the
dual dx, but i am interested in hearing. Trevor is also still not
toilet trained and has no body awareness.


--- In pws-autism@yahoogroups.com, "Kerry Headley" <k.headley@...>
wrote:
>
> Hi Everyone,
>
> I've been thinking lately about education/school options for my son
> J.R. who is almost 8.  I'd love to hear what everyone is doing
> regarding elementary and middle-school programming options.
>
> J.R. is still in kindergarten right now (second time) and I'm
trying
> to map out a plan for the next few years for him.  I love the
school
> he's attending right now but want to explore a home tutoring/school
> day blend.  I'm just a little concerned how he'll do with a full-
day
> at school.
>
> Looking forward to hearing from everyone.
>
>
> Kerry, Mom to J.R.
>

Hi Kerry:

I am keeping my children at home and plan to home school, but they
are only ages 4 and 5, so I have not formally filled out the
paperwork to home school.

Trevor still has no expressive language skills, so I am reluctant to
send him anywhere, plus the social services and school system in
Arizona are horrible. I hope we will be able to move out of state,
but i am just beginning to look at other states.

Regradless of where we live, i still plan to home school, though i
heard that some states have much harder cirriculum requirements than
others. there are many websites about home schooling and lots of
resources available. Where do you live?

My daughter is also showing problems with sensory integration and
possibly Aspergers. both children require a lot of time and help.
Trevor's dx of Autism has become axis 1 and PWS UPD as axis 2. He
just had a psych eval and is very low- functioning with a global
assessment of 10. He cannot even brush his own teeth or get dressed
unassisted. I do not know how he compares to other children with the
dual dx, but i am interested in hearing. Trevor is also still not
toilet trained and has no body awareness.


--- In pws-autism@yahoogroups.com, "Kerry Headley" <k.headley@...>
wrote:
>
> Hi Everyone,
>
> I've been thinking lately about education/school options for my son
> J.R. who is almost 8.  I'd love to hear what everyone is doing
> regarding elementary and middle-school programming options.
>
> J.R. is still in kindergarten right now (second time) and I'm
trying
> to map out a plan for the next few years for him.  I love the
school
> he's attending right now but want to explore a home tutoring/school
> day blend.  I'm just a little concerned how he'll do with a full-
day
> at school.
>
> Looking forward to hearing from everyone.
>
>
> Kerry, Mom to J.R.
>

PWS SCHOOL EDUCATION DVD!!
NOW AVAILABLE:
Prader-Willi Syndrome Association (USA) (PWSA (USA)) and Prader-Willi
California Foundation (PWCF) are proud to introduce a new and
wonderfully exciting tool to benefit those with Prader-Willi syndrome
(PWS) in school. A DVD entitled, "Understanding the Student with
Prader-Willi Syndrome: Strategies for Success," provides teachers and
other school personnel with an introduction and overview of the
issues associated with PWS and demonstrates and describes pragmatic
strategies that school staff can use in supporting the success of a
student with PWS in their classroom. Teachers and school staff will
appreciate a coherent explanation and demonstration of issues at play
with a student with PWS, concise explanation of various strategies to
use to support him or her, and user-friendliness of the DVD for busy
educators. Parents will value its role in helping their child in
school.
The DVD has been over a year in the making and has been a long-time
dream of PWSA and parents of children with PWS. A dedicated group of
individuals combined efforts and talent to make this project a
reality and to give those with PWS and those who work with them in
the school setting an opportunity to achieve the best possible
outcomes. In particular, Michelle Donaldson and Ruby Gold worked many
hours spearheading the production of the DVD, keeping it on track and
to point. Also, Bob Bernstein worked hard to organize a wonderfully
successful fundraising event in Boston, First & Goal, to fund the
project. The New England chapter and Bob's personal friend, Mike
Smith, went above and beyond to assist in the event's success,
ensuring the feasibility of the DVD. Teachers, students and PWS
expert, Mary K. Ziccardi, participated in the DVD providing a unique
view from which to understand the school environment and the student
with PWS. Many other volunteers and staff from PWSA (USA) and PWCF
worked together and contributed time and skill. Without all these
individuals, we might still be wishing for this needed DVD. A BIG
THANK YOU goes to every one of them!
The DVD is for all parents who have a child with PWS in school and
for all school personnel who have a child with PWS in their school.
To order the DVD for $20, please link to PWSA (USA) at
http://www.pwsausa.org/index.html
or Prader-Willi California Foundation  (PWCF) at www.pwcf.org

----- Original Message -----

From: Kerry Headley

To: pws-autism@yahoogroups.com

Sent: Friday, November 24, 2006 9:52 AM

Subject: [pws-autism] Educational Options for children with P-WS and Autism

Hi Everyone,

I've been thinking lately about education/school options for my son
J.R. who is almost 8. I'd love to hear what everyone is doing
regarding elementary and middle-school programming options.

J.R. is still in kindergarten right now (second time) and I'm trying
to map out a plan for the next few years for him. I love the school
he's attending right now but want to explore a home tutoring/school
day blend. I'm just a little concerned how he'll do with a full-day
at school.

Looking forward to hearing from everyone.

Kerry, Mom to J.R.

Hi Everyone,

I've been thinking lately about education/school options for my son
J.R. who is almost 8.  I'd love to hear what everyone is doing
regarding elementary and middle-school programming options.

J.R. is still in kindergarten right now (second time) and I'm trying
to map out a plan for the next few years for him.  I love the school
he's attending right now but want to explore a home tutoring/school
day blend.  I'm just a little concerned how he'll do with a full-day
at school.

Looking forward to hearing from everyone.


Kerry, Mom to J.R.

Good Search

A new search engine (like Google or Yahoo) works the same as all the
others, but for every search you do on the web, you raise a penny for
PWSA (USA).  Now you can raise money for PWSA (USA) just by searching
the Internet at GoodSearch.com. It all adds up!
You use GoodSearch.com like any other search engine — the site is
powered by Yahoo! — but each time you do, money is generated for us.
Here's how it works:
1. Go to www.goodsearch.com
2. Type PWSA into the "I support" box and click on "verify" then
scroll to PWSA (Sarasota, FL)
3. Search the Internet just like you would with any search
engine
4. Since GoodSearch shares its advertising revenue with
charities and schools, every time you search the Internet at
GoodSearch, you'll be earning money for us.
GoodSearch also has a toolbar you can download from their homepage so
that you can search right from the top of your browser.  The graphics
and details are on the PWSA (USA) website at
http://www.pwsausa.org/goodsearch/index.htm



Jodi O'Sullivan
Director of Community Development
Prader-Willi Syndrome Association (USA)
5700 Midnight Pass Road, Suite 6
Sarasota, FL 34242
Office:      (800) 926-4797
E-mail:      comdev@...
Web site:  www.pwsausa.org

Dear Family and Friends,

Wow…can you feel the love?!

It is a busy end of year for PWSA with more stupendous fundraising
efforts soon to occur and some still wrapping up after occurring in
October. We hope you can attend an event if it's in your area as you,
your family and friends are all invited. And to those who just
participated in an event, thank you!

I was recently asked if these efforts really do make a difference for
PWSA and I can tell you the answer is a resounding YES! Please
support the volunteers who are making these activities possible and
who are doing what they can to ensure we have a strong organization
that provides and funds top-notch services, support and research for
you and our loved ones who have PWS; as well as who are raising more
awareness of PWS. It makes a difference!

(If you cannot go directly to event page from link, please cut and
paste the link into the address line of your web browser.)

OCTOBER

27th 3rd Annual Jack Martin Bevacqua Dinner-Dance, Port Monmouth,
NJ     THIS WEEKEND!
http://www.pwsausa.org/fundraising/events/bevacqua.htm

28th A Night to Remember—An Evening of Music and Comedy,
Philadelphia, PA     THIS WEEKEND!
http://www.pwsausa.org/fundraising/events/NightToRemember.htm

All Month Tupperware Party Fundraiser
http://www.pwsausa.org/fundraising/events/tupperware.htm


NOVEMBER

5th Uncle Ryan O'Sullivan's 4th Marathon in honor of Josilyn
Faith Levine (NYC Marathon), New York, NY

6th 3rd Annual Prader-Willi Classic LPGA Pro-Am Event and a Night
of Comedy in honor of Josilyn Faith Levine and Zakary Maxwell Bassel,
Palm Beach Gardens, FL
http://www.pwsausa.org/fundraising/events/golfandcomedy.asp

11th First & Goal at Gillette Stadium with Live Performance by
John Eddie, Foxborough, MA (Boston area)
http://www.pwsausa.org/fundraising/events/firstgoal/index.htm

19th Colleen's Angels for Prader-Willi Syndrome, Oak Forest, IL
(Chicago Area)
http://www.pwsausa.org/fundraising/events/colleensangels.htm

19th Aunt Kelly's ½ Marathon in honor of Avery Waldrop
(Philadelphia Half Marathon), Philadelphia, PA


DECEMBER

9th 2nd Annual Madison Hurdle Softball Tournament, Cocoa Beach, FL
http://www.pwsausa.org/fundraising/events/index.htm


COMING SOON IN 2007!

January:  The 2nd Annual PWSA (USA) Lose-A-Thon begins
http://www.pwsausa.org/fundraising/lose-a-thon/index.htm

February: 5th Annual Valentine Research Fund Campaign

May:  PWS Awareness Month


MANY, MANY SPECIAL THANKS GO TO:
• Kate Loper who held a Bunco Tournament in WA on  October 14th
• Sharon Mayo who coordinated the Tuskegee Airmen Motorcycle
Club of VA "Prader-Willi Bowling Fundraiser" in VA on Oct. 21st  and
Lori Guthrie who helped obtain media coverage for it

If you would like to plan a fundraiser, big or small, first one or
not, please contact me. And if you've been thinking about doing
something for PWS Awareness Month (May), now's the time to start
planning. I hope you CAN feel all the love that goes into these
efforts! It makes a heart swell with gratitude and pride!

Best,
Jodi O'Sullivan
PWSA (USA) Director of Community Development
800.926.4797
comdev@...

A post from Jodi O'Sullivan
Dear Families and Friends,

In the most recent past months, PWSA has been honored by many friends
and families who have held fundraising efforts to support the
organization¡¦s work. This support is vital to PWSA to continue its
mission that states:

PWSA (USA) is an organization of families and professionals working
together to promote and fund research, provide education, and offer
support to enhance the quality of life of those impacted by Prader-
Willi syndrome.

You are integral to this organization and for each other, too. By
ensuring the viability of PWSA (USA), you are creating hope for all
of us¡Xallowing us to continue to improve the lives of our loved ones
who have PWS while working towards a cure and better treatments and
understanding of this complex syndrome. In every stage of life of
PWS, PWSA is and will be here for you¡Kfrom state chapters and support
groups to the international community (International Prader-Willi
Syndrome Organization or IPWSO). Those at PWSA (USA), volunteers
included, are working in every level in every way to keep progress
moving forward. Thanks to all of you and thanks to the following
individuals who coordinated the latest fundraising efforts that are
supporting PWSA:

„PJennifer and Brad Bolander and OH PWSA for Sophie¡¦s Walk on June 4th
in OH
„PPeter Kearney , Maurice Fox and the Steck family for the Annual
Charity Golf Outing in NY on June 10th
„PHeather and Stephen Burnham for their family Bella Bingo Day in ME
on July 1st
„PHope Mays for Clyde¡¦s Run in memory of Clyde Mays in GA on July 15th
„PMaria Silva for the Povertyneck Hillbillies concert & pig roast in
PA on July 16th
„PMike Kuna and Scott Kuna for participation in the Seattle to
Portland Bike-A-Thon in WA July 22nd weekend
„PPWSA of WI, Inc. for their 6th Annual Charity Golf Benefit in WI on
August 26th
„PJamie Bassel, Shawn Ellen and David and Bradley from Neighborhood
Sports Grill for the Neighborhood Sports Grill Charity Golf
Tournament in FL on August 27th
„PClint and Karla Hurdle, Darrin Kerbs and Kevin Mullen for Golf for
PWSA Annual Charity Golf Tournament in honor of Madison Hurdle in CO
on August 28th
„PPamela Claudio and the Chymbor family for Health Fair in honor of
Evan Chymbor in CT on September 9th
„PPatrick Meakim and Cal-Trip Electronics for the 3rd Annual Cal-Chips
Electronics Annual Charity Golf Tournament in PA on September 15th
„PBill Vucci and the Fun Bunch Committee for the Prader-Willi Open
Golf Classic with celebrity guest speaker, USA Olympics Gymnastics
Gold Medalist Kerri Strug, in honor of Maria Christine Vucci in MD on
September 21st
„PJessica Howard and Farrah Sinclair for their online Creative
Memories fundraiser the entire month of September

I invite you to chime in and offer congratulatory comments to any of
these individuals who worked hard to make these efforts happen or any
other person who has done something special for you or PWSA.

If you, too, would like to organize a fundraiser for PWSA (USA)
please contact me. It doesn¡¦t matter if you¡¦ve never done a
fundraiser before¡Kyou can do it! Many people did their first
successful fundraisers for PWSA (USA). It¡¦s also not too early to
start making plans for PWSA¡¦s PWS Awareness Week in May. You¡¦ll have
support from PWSA (USA) and also from those who¡¦ve planned a
fundraiser before who have volunteered to help guide others who need
it.

The possibilities you bring are truly exciting. Thank you!

Best,
Jodi O¡¦Sullivan
PWSA (USA) Director of Community Development
800.926.4797
comdev@...

Dear Diane,

 

Thank you for this description!

 

Your child's behavior illustrates perfectly the distinction between "ravenously hungry" and lack of satiety. There is other good evidence that the children (and adults) are not hungry but once they encounter food there is little to stop their eating (satiety signals in the rest of us stop our intake within minutes of starting a meal but are weak, delayed and shortlived in PWS)  This is important, since it is likely that the pleasure of eating drives the food seeking rather than hunger. I think it is an inportant insight since parents are led to believe that the children are suffering with hunger all the time. This is a terrible paradigm and almost certainly false.

 

Linda M. Gourash, MD

 

 

In a message dated 9/14/2006 5:43:38 PM Eastern Daylight Time, rodise6@... writes:

Kerry,

Hello! We met three years ago when Reagan was first born.  I have had the priveledge of meeting J.R., he is a very sweet boy.
Some of the things that you mentioned about J.R. are simillar to Reagan.
His speech is there but he has mild cognitive play deficits, and severe articualtion and oral motor deficits.  He also has some of the behaviors that you mentioned self-stimming, will not make eye contact, and gets "stuck on a subject" or often reverts back to a particular subject if he feels he is being challenged.  He also has difficulty holding his attention to the task at hand if there are other distractions such as loud noises, music playing, other kids nearby. He also has alot of sensory issues.  We work on all these things daily. Since he has started preschool and will have additional OT, PT and ST during class.
I don't want to try to "Diagnose" him, but I see a little bit of SPD, traits of OCD, traits of  Autism, traits of ADD...I don't know which one to address first!
We have been potty training since Jan -- now that he is in preschool he is modeling his peers and doing much better, I think that it took seeing other kids on a daily basis using the potty for him to get it.
As far as food goes... He never asks to eat, I have to ask him to come to his high chair a million times.  He often says "no I don't want to eat" But once he is in his chair he will eat all of what is put in front of him.  So I ask myself...Is the problem the actual transition from play to food or is he simply not hungry?

Diane Seely

 

Kerry,
I toilet-trained Alex using a book by Fox and Asrin.  Can't remember
the title, but they wrote a book on toilet training people with
mental retardation.  I bet you can still find it in the library.  It
worked for me, and J.R. sounds like he can pick things up, with
repetition.

Ivy

- In pws-autism@yahoogroups.com, "Kerry Headley" <k.headley@...>
wrote:
>
> Hi everyone,
>
> My son J.R. is 7 years old, P-WS Maternal Disomy and has had the
secondary
> diagnosis of Austism since he was 2 years old.  J.R. is completely
> non-verbal.  He loves to sign (especially about animals, colors,
and
> numbers) and use his speech device when absolutely necessary.
He's very
> interested in Sesame Street videos/DVD's, numbers, colors, and the
alphabet.
> He has a number of "traditional" autistic behaviors like self
stimming, poor
> relationship skills, and not being able to maintain visual contact
as well
> as lots of traditional P-WS characteristics.  J.R. is very easy-
going and
> happy and doesn't seem frustrated (yet) by his inability to
speak.  He's
> pretty good at getting his point across with either signs,
pictures, or his
> speech device.  If we still can't figure out what he's saying, he
ususally
> just drops it and moves on without incident.
>
> J.R. is still not 100% potty trained.  He'll go any time I put him
on the
> potty but doesn't initiate telling me he has to go.  I'd love to
hear
> strategies on how anyone has suceeded with potty training as
diapers are
> pretty expensive for such a big kid!
>
> J.R. loves to eat but has had recent episodes when he refuses to
eat.  He
> gets stuck on an idea or video or song and can't get past it and
not even a
> meal can break him out of it.  This definitely scared me at first
but after
> many trips to the doctor and one for stomach x-rays we just came
to the
> conclusion that there would be times when the autistic
characteristics win
> out temporarily.  Does anyone else's child refuse food at any time?
>
> I'm so glad we have this group!  I've read so many things that are
such
> similarities.
>
> Kerry Headley
> Mom to J.R. (7 1/2 PWS UPD)
>
>
>
>   _____
>
> From: pws-autism@yahoogroups.com [mailto:pws-
autism@yahoogroups.com] On
> Behalf Of boyle_ivy
> Sent: Wednesday, September 06, 2006 3:24 PM
> To: pws-autism@yahoogroups.com
> Subject: [pws-autism] problems of the young adult
>
>
>
> Alex is 19, and we're beginning to deal with his future. I have
> several questions:
>
> 1. The doctor wants to start him on testosterone for his bones.
Alex
> functions like a 2 year old. Has anyone else with a child with
> autistic symptoms used testosterone? What has been your experience?
> 2. Does anyone else's child work, in a workshop or other program?
> How has that worked out?
>
> Lastly, I have a feeling we have lots of different age groups in
this
> group. Maybe we should all report our children's ages, so that we
can
> figure out what the different issues are at different times in our
> children's lives.
>
> Thanks,
> Ivy
>

Hi Terri and others in group:

I am new to this group. My son Jacob has both PWS and autism. He is 9-
1/2 and I am discouraged to say he has not yet toilet-trained either.
We keep working on it with him, but he is uninterested. He only has a
few words like Hi, Mom, and car, and probably the age level of a 2 or
3 yr old. We are using a picture exchange system with him , but this
is only partly helpful because we dont always have pictures for what
he wants to say!  He does have some stemming behaviors including
hitting himself in the head. Most of his frustration seems to stem
from his inability to communicate.

He has been on GH since he was a year old.  His height and weight are
in the normal ranges. He does not seem to food seek too much but will
definately eat what is put in front of him. He is really difficult,
you are really lucky to get so many attendant hours! Here in
Massachusetts we only get 11 1/2 hours a week!

I have been a member of the New England capture of PWSA since he was
born.  I know about 20 families very well (with kids with PWS) but
all their kids who are about Jacob's age have far surpassed him, they
are speaking, trained, reading, writing and for the most part in
regular school. Jake is in a special school geared towrds kids with
autism.  But it is nice to have the support of these families.
Actually about 8 of us drove up to the conference in new York in
July. It was great.

As difficult as he he, Jacob is very loveable, sweet and funny!

I am glad to have found this group. I'll keep in touch.
Renee
mom to Jacob (PWS) age 9, Grace 12, and Luke 15 (my husband is Steve)






--- In pws-autism@yahoogroups.com, "Terri & Howard Schlange"
<familyof4@...> wrote:
>
> Hi!
>
> I'm new here & would like to introduce my son.  Patrick is 8 years
old with UPD PWS & autism.  Patrick would play somewhat appropriately
& said a few words until the age of 2 when all that stopped.
>
> Currently, Patrick is completely non-verbal, is still in diapers, &
cognitively age one.  We had him on growth hormone until last Fall.
He was a bit overweight then, but now has gained 40 lbs. since we
stopped GH.  He has probably been eating less than when he was on GH,
but has gained weight much more rapidly.  We'll take him back to the
Endo on Aug. 24th to discuss putting him back on GH.  We were worried
about him getting to strong for us to care for with him on GH &
that's why we stopped.
>
> Patrick is very loving, loves to feel textured things, & only self-
abusive.  He hits himself in the head with his hand or stomps his
feet when he's mad or lays on the floor & kicks his feet.  Patrick
used to head bang, but has stopped that.  I believe this would go
away if Patrick could verbalize his feelings.
>
> Patrick mostly likes to watch DVD's, look at Horns to Toes book, or
eat.  Patrick's caretakers keep him active by swimming or walking.
>
> We live in Kansas & at age 5, Patrick was qualified for a HCBS
waiver so he gets 12 hours of Attendant Care each day, 22 respite
hours each month, Medicaid as secondary insurance, & his diapers paid
for up to a certain amount each month.
>
> I feel extremely lucky to have the Waiver because my husband was
offered a job in Nebraska, but he won't take it because Patrick
wouldn't qualify for any of the above services.  Does anyone have
something similar where you are at?
>
> I would love to hear about your children!  Thank you!
>
> Sincerely,
> Terri Schlange
> Mom to Eric, age 11, & Patrick, age 8 with autism & PWS, & wife to
Howard
>

Alex is 19, and we're beginning to deal with his future.  I have
several questions:

1.  The doctor wants to start him on testosterone for his bones.  Alex
functions like a 2 year old.  Has anyone else with a child with
autistic symptoms used testosterone?  What has been your experience?
2.  Does anyone else's child work, in a workshop or other program?
How has that worked out?

Lastly,  I have a feeling we have lots of different age groups in this
group.  Maybe we should all report our children's ages, so that we can
figure out what the different issues are at different times in our
children's lives.

Thanks,
Ivy

September Events/Efforts

Dear Families and Friends,

Here is a reminder and new posting of some of the events/efforts
happening in September to support PWSA. Please go to
http://www.pwsausa.org/fundraising/events/index.htm and check them
out and others in the coming months. We hope you can go!

You can click on link to go straight to event page:

September
9th: Health Fair Organized by Welcome Home Care in Honor of Evan
Chymbor, Meriden, CT
http://www.pwsausa.org/fundraising/events/Health%20Fair.htm

15th  Cal-Chip Electronics Annual Charity Golf Tournament, Jamison,
PA (Philadelphia Area)
http://www.pwsausa.org/fundraising/events/Cal-Chip.htm

21st: Prader-Willi Open Golf Classic with Celebrity Guest Speaker,
USA Gymnastics Olympic Gold Medalist, Kerri Strug, in honor of Maria
Christine Vucci, Laytonsville, MD (Washington, D.C. area)
http://www.pwsausa.org/Golf/index.htm

All Month: Creative Memories Online Fundraiser (see below for
copy of previous email about this)

CREATIVE MEMORIES
For those of you who know our son, Riden, you know that he is an
adorable, happy little boy. If you didn't know any different, you
wouldn't suspect that he was born with Prader-Willi Syndrome. As a
result, one day, as soon as tomorrow, as late as age 10, Riden may
start feeling the insatiable hunger that is the hallmark
characteristic of Prader-Willi Syndrome. This intense hunger does not
go away and there is no cure. It prevents those with it from having a
normal life, as they must be monitored 24/7.

We are optimistic that a cure for the hunger can be found and raising
money for research is the key. Farrah Gage Sinclair, Riden's
Godmother, is a Creative Memories Consultant and has been so gracious
and will donate 100% of her profits from her online sales for the
entire month of September to the Prader-Willi Syndrome Association's
Research Fund.

Please visit her website
http://www.mycmsite.com/sites/farrahsinclair/catalog-index to plan
out your purchases! Creative Memories offers superior-quality photo
organizing, albums and scrapbooking supplies. All are guaranteed
photo safe.

Purchasing ideas:

  *Organize and edit your photos digitally with the Memory Manager
software.
* Keep your photos safe and organized in the Power Sort photo safe box
* Give archival-quality photo albums as gifts (you'll receive Sept.
orders in time for Christmas!) Ask Farrah for ideas!
* Get the supplies you need to create the photo album you have been
meaning to put together.....everyone has a story to tell and the best
way is through a Creative Memories photo album.

We'll send you a reminder before the fundraiser starts on September
1. In the meantime, feel free to ask Jessica or Farrah any questions.
And, please forward along to friends!

Jessica Stubbs Howard
e-mail: jessica_s_howard@...
Falls Church, VA
cell: 703-819-4983

Farrah Gage Sinclair
e-mail: farrahcm@...



Best,
Jodi O'Sullivan
Director of Community Development
comdev@...

Hi Terri,

Welcome to the group!  It's nice to hear about Patrick.  My son is both
very similar, and very different.  Alex is also autistic but very
loving.  He loves to feel textured things, too, and is very attached to
his beads, which he rubs.  He is not aggressive, in general, but will
pinch when very upset.  He is much older than Patrick (age 19) but,
really, he hasn't changed much since he was little.  Alex is on a
waiver, too.  We are so grateful for it!  We live in Ohio, and would
never move out of the state because he would lose all his services, so I
really know what you mean.

One way Alex is different is that he is very thin.  He has been on GH
since he was 3, and is very tall (like his dad and brothers).  He is
certainly interested in food.  However, he gets a mainly vegetarian
diet, with lots of veggie burgers, and tons of vegetables and fruit.  He
doesn't know when he is full, but his diet is easy to control.  Do other
people find that the food is, in some ways, easier to control with these
kids?  My kid does not really have the capacity to be argumentative or
to sneak around in the kitchen.

I haven't found that GH makes Alex harder to control.  He is tall and
skinny instead of short and heavy, but I think the weight is probably
less, in total, because of the GH.  Alex is not particularly muscular.

Thanks for writing!  I am really interested to know how similar or
different these kids are.

Best,

Ivy Boyle




--- In pws-autism@yahoogroups.com, "Terri & Howard Schlange"
<familyof4@...> wrote:
>
> Hi!
>
> I'm new here & would like to introduce my son. Patrick is 8 years old
with UPD PWS & autism. Patrick would play somewhat appropriately & said
a few words until the age of 2 when all that stopped.
>
> Currently, Patrick is completely non-verbal, is still in diapers, &
cognitively age one. We had him on growth hormone until last Fall. He
was a bit overweight then, but now has gained 40 lbs. since we stopped
GH. He has probably been eating less than when he was on GH, but has
gained weight much more rapidly. We'll take him back to the Endo on Aug.
24th to discuss putting him back on GH. We were worried about him
getting to strong for us to care for with him on GH & that's why we
stopped.
>
> Patrick is very loving, loves to feel textured things, & only
self-abusive. He hits himself in the head with his hand or stomps his
feet when he's mad or lays on the floor & kicks his feet. Patrick used
to head bang, but has stopped that. I believe this would go away if
Patrick could verbalize his feelings.
>
> Patrick mostly likes to watch DVD's, look at Horns to Toes book, or
eat. Patrick's caretakers keep him active by swimming or walking.
>
> We live in Kansas & at age 5, Patrick was qualified for a HCBS waiver
so he gets 12 hours of Attendant Care each day, 22 respite hours each
month, Medicaid as secondary insurance, & his diapers paid for up to a
certain amount each month.
>
> I feel extremely lucky to have the Waiver because my husband was
offered a job in Nebraska, but he won't take it because Patrick wouldn't
qualify for any of the above services. Does anyone have something
similar where you are at?
>
> I would love to hear about your children! Thank you!
>
> Sincerely,
> Terri Schlange
> Mom to Eric, age 11, & Patrick, age 8 with autism & PWS, & wife to
Howard
>

--- In pws-autism@yahoogroups.com, "aileen_yamashiro"
<aileen_yamashiro@...> wrote:
>
> Does anyone here recommend GH therapy for their grown or almost
grown
> child?  I'm wondering if maybe that helps with behavior?
>
> Also,  does anyone use medications?  If so, what kind and what are
the
> results?
>
> Anyone here also have a diagnosis of PWS, PDD-NOS, BI-polar
disorder?
>
> Daniel is 18 and has been diagnosed with all of the above.
>
> I'd love it if there was someone I could share information with
> regarding all of the above.
>
> Thanks.
>
> Aloha,
>
> aileen
>
Hi, Aileen.

Alex is on GH and behaves just fine.  On the other hand, I've heard
some parents of kids with behavior problems complain about GH.  They
say it makes the kids stronger, and they act out more.  I certainly
am being very cautious about starting Alex on testosterone.  The
endocrinologist wants him to be on this med for his bone strength.
I am concerned that my mild mannered son will become aggressive.  Do
others have this concern?

Thanks,
Ivy

Does anyone here recommend GH therapy for their grown or almost grown
child?  I'm wondering if maybe that helps with behavior?

Also,  does anyone use medications?  If so, what kind and what are the
results?

Anyone here also have a diagnosis of PWS, PDD-NOS, BI-polar disorder?

Daniel is 18 and has been diagnosed with all of the above.

I'd love it if there was someone I could share information with
regarding all of the above.

Thanks.

Aloha,

aileen