Hi Elizabeth,


>Mind if the nosy OT buts in a bit?

        Please help yourself.

>Have you discussed your concerns with the OT's at school ?  (I know I'm in
it for
> asking that one).

        Amber isn't eligible for OT or PT services thru the school system,
She has a Physical Disabilities Itenerant Teacher who comes in works with
her for 1 hour each week. Frankly the new PDI - wants to remove Amber the
program so she can concentrate on children that truly need the help. I am
amused - last year Amber classroom teacher couldn't deal with a disabled
child in her Gifted class - this year the PDI can't deal with a Gifted in
Special Ed. program. She did keyboarding that one hour - then last quarter -
Amber had shop and she came and helped her use the heavy saws and such. They
are back to keyboarding.

>You may wish to try to get voice recognition once Amber is a little farther
>along puberty.  Even girls change their voices. Is she getting keyboarding
>instruction at school?  Have the assistive technology team tried using
>different kinds of keyboard access with her such as a smaller keyboard,
>keyguards, intellikeys, etc to access a smaller word processor such as an
>AlphaSmart?  Once Amber is over 14 see if you can get your state Voc Rehab
>to pay for a computer (hey, sometimes this actually works for those of you
>who have had bad luck with Voc Rehab).  Or try contacting your local Tech
>Act provider.

    Amber has been assigned an AlphaSmart. Time seems to be a major factor -
Amber has 7 classes and none of them are free period or study hall. She
misses parts of her classes to do the computer stuff - like download and
just type the stuff. They put a program on a computer in the English class
that can do word prediction - but with so little time - I am thinking of
having her stay after 3 days a week to do stuff like that - but that seems
vaguely like punishing her for the counties already stuffed schedule. The IT
people put the word prediction program on the computer for her and assigned
her an the AlphaSmart - the PDI teacher would rather have the AlphaSmart for
another child. She just fails to see how hard it is when Amber has to make
both sides of her body function together - her options are either do
something very slowly, laboriously concentrating on her right hand and be
horrendously behind - or keep up and get a half completeled totally sloppy
job done. I have fought and fought for more time - but she trys so hard, is
so normal looking - the teacher keep saying she just isn't trying hard
enough and needs to get organized. And I am coping with a sobbing,
frustrated child who can't get it all done.



>Check on my website I think under http://www.bv.net/~john/assadapt.html
>for sites.
>Can she use her right hand as a stabilizer?  You know holding things down?

        Can and does - but the more she concentrates on cognitive processes
the less and less she can do with her hand.

>That's the only problem with the estim units.  Didn't you get to keep the
>unit after all that time?  They actually work best if you can incorporate
>their use with a fun task to do.  What kind of e-stim?  Was it the
>functional kind (FES) that is all the rage now?  It's generally worn at
>night.  The e-stim I'm familar with I've done on a stroke patient and had
>him grab things (gotta have that mind/ body connection)


    Amber had e-stim assisted pt for 8 years. Shirley would wired her up and
then they did the pt. Exactly like working with your stroke patient. We TES
breifly and the two combined worked beautifully and she actually used her
right hand without think several times. When I lost my BCBS coverage and got
other insurnace - they dodn't cover stuff like that. Now, I was spoiled with
BCBS - I worked for them for 18 years before being laid-off in 94 and was
able to hold onto my insurance for almost another 2 years. Amber father
doesn't insure her and to be frank - is so irresponsible - I have in the
decree - I will carry the insurance - so I know we have it. I have the units
but can't find a place to get the electrodes except thru Mayatek and they
cost earth. I am a firm believer in TES, FES and e-stim assisted pt - it may
not work quickly but it reversed the atrophing in both the bones and muscles
and stimulated both to grow. It replaces the electrical impulses your brain
isn't producing. If you're interested I can share Amber's PT's name and
number with you. Are you on the CPParent list also?
We discuss it there. Also - check-out the TASC web site - they contacted
me - for a story, I guess they must have run across a earlier article I
wrote.

""We appreciate your support of ThresholdES therapy.  We would like to let
you know about a new website where parents are invited to share their
thought on ThresholdES and discuss things that have worked for them.
The site is www.tascnetwork.net  You can share a bit of your story with
other parents looking for options to assist their children.  The goal of
the site is to foster communication between parents, practitioners and
the general public interested in the program.  Your experiences could
quite possibly help change the lives of others.""

    Anything I can help you with on this let me know. It literally took
Amber's arm and hand from a paralized closed fist clenched under her chin
and atrophing limb - to a at one point completely functional hand with
fingers capiable of independent movement and added both muscle mass and bone
length. I believe if we could have continued thru her growing years - she
would be able to function on a normal level eventually.

    Oh, and we live in Alexandria, Va just outside Washington, DC. Where are
you?


                                        Brightest Blessings
                                               Trisha