Trisha,
Don't ever think you are whining about your Amber.  You worry about her and
want the best for her.  You know she can do so much and you want her to be
her best.  Sounds like a normal mom to me.

Elizabeth Thiers, OTR
email: [log in to unmask]
homepage: http://www.bv.net/~john/bethsot1.html

----------
> From: Trisha Cummings <[log in to unmask]>
> To: [log in to unmask]
> Subject: Re: Fw: Right Hemi
> Date: Wednesday, April 07, 1999 9:52 AM
>
> Hi Elizabeth,

>
>     I hate to whine about Amber - she is so beautiful, so good,  so smart
> and so functional for a kid predicted to never walk or talk. Never the
less
> the world is set up for two handed people and one handed ones need help
> adapting!!

>         Actually, I got fairly confrontational with the PT who did the
eval
> and said no. She just doesn't have the resources to send someone to see
> Amber - and I wouldn't want to take services away from some child who may
> need it worse. Their criteria are it must interfer with her school work
and
> with Amber it's easy to say - she just needs to work harder and apply
> herself, get organized - whatever!!!
>
>                                     Brightest Blessings
>                                           Trisha
>
>
> >ArrrrGH!!! What century is Fairfax county working in?  A child can be
> >gifted and still qualify for services under Special Education.  When's
the
> >last time they evaluated Amber?  You may have to get a little nasty with
> >them Trisha.  Amber still qualifies for services under ADA that's title
> >504.  The problem is schools don't like to let parents know about that
> >little law because, they recieve no funding.  They have to provide
> >accomadations to Amber and that sometimes means providing for OT, PT, or
> >here in Florida sometimes ST.  Are they teaching her one-handed typing?
> >There are several out there that combined with word prediction could be
> >powerful.  What ever you do, don't let them take that AlphaSmart away.
Let
> >me see if I can find some of electrodes in the big Sammons Preston
catalog,
> >I might be able to find them for a better price.
> >I'm going to forward you email to some collegues, they are really good
at
> >brain storming stuff like this.  I have yet to figure out why schools
fight
> >helping kids like Amber so much.
> >
> >
> >> >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