Hello Dianne,
What a great adventure you and your husband are about to embark on. You'll
get to learn all sorts of new lingo that you never knew existed. I wish
you the best of luck. I'm a pediatric occupational therapist. First thing
you need to do if you haven't already is contact your local Early
Intervention Center. You can usually find this by calling your local/
state Child Find number, check your local yellow pages. (Doctors only
sometimes have this information). Your son should be evaluated by an
occupational, and physical therapist and speech pathologist. Also, get a
developmentalist to check him out. In our area, we have arena evaluations
to assess this. It may take some time but, keep pushing them to get it
done. Children don't grow out of CP and by learning how to position him
now will help decrease some problems later.
Make sure to check to make sure your childs had the full range of
diagnositic testing. In our area, the docs are finding that many children
have mitochondrial disorders instead of the typical lesion in the brain.
And also just as important, get into a local support group for parents.
Arm yourself with information such as your rights to therapy, Medicaid/
social security laws, best practitioners in your area, etc. Also, when
your frustrated (and you will get frustrated at times like all parents do)
you'll have a sympathetic ear to listen to you.
And above all else, be a parent, be a mom. Don't let practioners talk you
into doing all the therapy for them. Love your child, expect the best and
never fall into the "poor babies got a disability" trap.
You can find more CP resources at http://www.bv.net/~john/bethsot1.html
click on C resources, scroll down to cerebral palsy.
Again best of luck.
Elizabeth Thiers, OTR
email: [log in to unmask]
homepage: http://www.bv.net/~john/bethsot1.html
----------
> From: Dianne & Gerry <[log in to unmask]>
> To: [log in to unmask]
> Subject: Re: Quiet list
> Date: Monday, February 22, 1999 4:44 PM
>
> Thanks for sharing, Lara. My son, Evan, is not yet a year old, and has
been
> recently diagnosed with mild spastic diplegia. I'm just now learning
what
> CP is, and reading about a lot of different theories and therapies and
> treatments. Enough to make my head spin. And I still don't know if
we're
> doing everything for Evan that we should be.
>
> Do you have advice about the best way to find the best care for him?
>
> Regards,
> Dianne
> -----Original Message-----
> From: Lara W. Cushing <[log in to unmask]>
> Date: Sunday, February 21, 1999 5:08 AM
> Subject: Re: Quiet list
>
>
> >Hello Everyone!
> >
> >I agree with Chester, the list has been extremely quiet lately. I have
> >been consumed in my third year of nursing school. I had the priveledge
of
> >taking care of a fellow CP on the child floor the other day. Her CP was
> >severe...and I remark on the variance that exists within and among the
> >cerebral palsy diagnosis and effects to the body. We were both born at
27
> >wks, but she is confined to a wheelchair, nonverbal, and total ADL's. I
> >felt great pride and awe to be able to work with her, read stories and
> >notice the difference a gentle touch or a kind tone affected her.
> >
> >I would love to share my story or experiences with others...
> >
> >Sincerely
> >Lara
> >
|