Hi Elizabeth,

                Thanks!

                                Trisha


>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


>> From: Trisha Cummings <[log in to unmask]>
>> 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