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Re: Lin   Message List  
Reply | Forward Message #42 of 145 |
Hi Lin,
I'm not sure you will remember me; we spoke by phone about 3 years ago when you had recently moved to AZ and we were contemplating a move from CT to AZ.  Nolan (PWS by deletion) will be 4 in June.  Nolan has many signs of autism spectrum disorder except for his verbal skills which are pretty good.  We are dealing with lots of behavioral problems, severe food seeking, self injury, significant perseveration, constant supervision, safety issues, lack of ability to potty train, etc.  My nephew was just Dx with Asperger's and ADHD so I understand some of the struggles you describe with your daughter.
 
We ended up moving to Wisconsin and I could go on and on about the wonderful services here.  If you are considering moving, you might want to consider Wisconsin.  We have a strong PWS chapter (www.pwsausa.org/wi), significant funding for children with Autism, and depending on where in the state you live, there are family support funds, respite funds, state conferences for families with children with disabilities, and many good resources and therapy agencies.
 
Feel free to email me privately at moonandstars4@....
 
I am sorry for all you are going through with your children.  I remember your situation 3 years ago and your challenges as a single parent must be enormous.  I wish you all the best.
 
Jennifer K.
 
 
----- Original Message -----
From: linplus2
Sent: Friday, March 30, 2007 8:59 AM
Subject: [pws-autism] Re: Educational Options for children with P-WS and Autism

Hi Terri (and others!):
Thank you for sharing about your son, Patrick. He sounds a lot like
my Trevor at age 5, he is regressing further and his fine motor
skills have not improved since age 3. He is still in diapers (UGH!)
and lost all his speech at age 18 months after innoculations. Trevor
loves DVDs and perseverates on them, he is interested in a few toys
but does not really play much and he likes books, too. I have tried
supplements and have Trevor on Carnaware presently; I keep both
children on an organic wheat/gluten/sugar free diet; and I try
holistic therapies. I have never tried ABA and we have just started
with a speech therapist after being on waiting lists for 4 years.
Trevor is very mellow and loving and seems way less PWS than
autistic. He does lots of spinning and falling; has a very wobbly
gait and disrupted sleep patterns; eats with his hands only and
cannot drink from a cup except infant-straw types; he chokes alot and
has sensory integration issues. Overall he is a happy child and very
compliant. He seems to understand what I am saying, but has delayed
responses often with little eye contact and no expressive language
skills.
My little girl Chloe, age 4 is apparently also showing signs of "mild
autism" or high functioning Aspergers. I do not understand the
connection between the two children yet. They are opposite in every
way. My daughter talks non-stop and repeats/recites entire videos;
she is extemely petite, lacks social boundaries and has sensory
issues, somewhat flat affect, awkward high muscle tone, pica, etc.
Some doctors feel she may outgrow some of her odd behaviors, but
others feel she will have to be taught social skills through wrote.
I just took both children to California for further evaluations and I
am looking into more Autism resources. We will probably move out of
state (Arizona) once I find where we might have better social
services and medical care. I am a single mother, and the past 5 years
have been challenging, but I do plan to try to home school both
children and figure out how to keep us going financially
simultaneously.
Looking forward to learning other experiences and ideas from everyone
on this group. Thanks again for sharing.:)

--- In pws-autism@yahoogroups.com, "Terri & Howard Schlange"
<familyof4@...> wrote:
>
> My son, Patrick, will be 9 on Sunday. He is completely non-verbal,
in diapers, & cognitively about age 1. I have tried several autism
therapies (diet, applied behavioral therapy, supplements), but
nothing has helped much. Patrick doesn't really play. He likes to
look at a certain book, watch DVD's, eat, & cuddle. He used to say
some words & play, but lost all words by age 2. At age 5, he was in
the 16 to 18 month old range & has declined since then with his
cognitive abilites.
>
> I home schooled my older son for 4th grade. I filled out info
online. There are stricter rules in KS when the child is in high
school.
>
> Terri Schlange
> Kansas
>



Fri Mar 30, 2007 3:22 pm

plantgirl1414
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Hi Lin, I'm not sure you will remember me; we spoke by phone about 3 years ago when you had recently moved to AZ and we were contemplating a move from CT to...
JenniferK
plantgirl1414
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Mar 30, 2007
8:04 pm
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