Hi Elizabeth,
They did a tri-ennual last year in March. Amber is very functional and
they provide services only for help with school. They decreed she doesn't
need OT or PT help to be in school. The only help she is eligble for is the
Special Teacher and then only 1 hour a week. I even have problems getting
them to help her in PE. Fairfax county has 19,000 special needs kids - my
mind boggles at the number! I once had a parent be very sorry for me when I
was being sympathic about her very affected child and how hard this must be.
She said - She was sorry for me because it was worse for me because Amber
looks so normal and that was going to make life hard. The teacher is working
with her on typing. But how much can she do in 1 hour once a week - which
was why I wanted another avenue for Amber - she can tell you all about what
she wants to write but poops out before it gets written. I understand I do
everything at the keyboard because it takes to long to write.
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!!
The electrodes are in different sizes depending on where thay are
located. thin rectangluar ones for her back, large and small squares for her
tummy and arm and round for her thumb. Mayatek's came pre - gelled but the
gel gave out quickly and then she would get uncomfortable.
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
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