Re: TIM HARTSHORNE Re: Behavior issues

[Guest guest]

Betsy,

There has been lots of interest in figuring out " behaviors " commonly

seen in CHARGE.

One group of those behaviors can be considered " autistic like " . My

child at some stages fully meets all the criteria for autism, but at

other times he is less " autistic like " .

The biggest thing is to find people who are willing to understand the

child, understand what is likely to lead to engagement and what is

likely to lead to a flare up or shut down.

The children do not have the ability to DECIDE to do what you want

when they are in a state of stress. We must help balance the

environment so they can manage the stress and be engaged.

State deafblind projects are an excellent source of information, even

for those with CHARGE who are not known to have combined vision and

hearing loss, simply because deafblind strategies follow very sound

neurodevelopmental principles.

I also recommend the book, The Fabric of Autism, by Judith Bluestone

which can be found at www.handle.org Anyone who wants to understand

more about the quirks in CHARGE should read it if their child is

autistic or not.

Kim

>

>

>

>

>

>

> I'm changing the subject line so Tim Hartshorne might jump in here - he will

> have a great explanation about your question. It's likely not a separate

> diagnosis of autism, but he's a professional so I'll let him field this if

> he sees it.

>

>

>

>

> >

> > I have a good friend with a 5 year old daughter who has CHARGE. She

> > doesn't

> > have access to the internet very often, so I am writing for her. The

> > school

> > thinks that she also has autism. I was wondering if there are ways to

> find

> > out if this is autism or what is going on. Do other children with CHARGE

> > have autism?

> >

> > The little girl's language is very delayed and she has a lot of behavior

> > issues. She also has 'stims' like flapping her hands and flicking her

> > hands

> > in front of lights. She has problems focusing on any activities for any

> > length of time at all. My friend wonders if it is ADD or something like

> > that. Any change in their plans seems to be really upsetting, so

> > transitions are a big issue.

> >

> > Is there any resource or information that could help my friend sort out

> > how

> > to address the issues at home and at school? She's worried about

> > frustration

> > and the fact that her daughter doesn't communicate with words but always

> > pulls her hand to the video or toy that she wants.

> >

> > Her preschool group of teachers doesn't seem to know how to address her

> > behaviors, frustration, and difficulty with language. It seems like they

> > want to help but really don't know how. The little girl is deaf and goes

> > to

> > a preschool class for kids with hearing impairment.

> >

> > Otherwise, she is doing pretty well with health issues. She had heart

> > surgery when she was a baby and recovered very nicely.

> >

> > Thanks for any ideas, resource suggestions... betsy

> >

> >