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
>