[tri-med] Re: Using your "quote" from the eating apples thread.

----- Original Message ----- 
From: "Therese"
> Our fight seems to be she is cognitively low...so they don't feel she
> should get specific services and I feel, if she's low than give them to
> her and lets see where she''ll go...

You don't want to know how low Alex is testing out at these days - way too 
many LTE's. But you see thats it - I don't let anyone test him, and if I do 
consent to testing the score is marked private and disclosed to no one but 
me. Not even Alex has any idea and if I have my way he never will.

Because the school don't know the score (and they want it!!) they must treat 
him as any other child and base his services on observed need not perceived 
ability. The level that he functions at is vastly different to his paper 
score. But you could bet your bottom dollar that if they knew his score he 
would be functioning at that level.
Demand the world and expect nothing...... If you demand nothing, you get 
nothing.

> My daughter is in no way talking....But  the last week, I have heard
> three vocal sounds that sound pretty appropriate for the situation and
> the time I heard them...

At 4 1/2 Alex was totally non-verbal. He "could" make all the sounds of 
speech, but didn't unless you cajoled them out of him he didn't even do 
that. The hours we spent in therapy creating play situations to illicit the 
sounds of speech.

His audiologist and speech therapist argued with me till I was blue in the 
face that he would never talk because it wasn't just dyspraxia and a hearing 
issue he was retarded.

OK - maybe he would never talk, but I wasn't about to give up on him. Like 
Natalia any health set back would rob us of months of work. Typically each 
cardiac arrest would lose us at least 6 months, a hypoxic event 3 months. 
But we kept on plodding.

The year before he started school I did two things differently. I started 
him on Efalex and I sent him to a special school - a school for the deaf. 
Just 2 days a week. Perfect. The teacher "got it" - she understood what I 
was trying to achieve and how I was going about it. She did the same, but in 
an environment that immersed him communication - sign language BUT every 
sign was spoken as well as being represented pictorially.

For Alex the problem wasn't that he couldnt talk, because he could vocally 
make the sounds - the real problem was that he didn't understand that he 
needed to talk because he didn't understand the whole concept of 
communication.

Six months of immersion in that environment and he was stringing sounds 
together to approximate words. Then slowly he started stringing the words 
together. It was the most amazing year.........

By the time he went to school the next year he didn't need anything to get 
his message across in words. Yes, he was hard to understand but if you were 
patient you could understand (with a bit of guessing at times) Now ask 
anyone who has phoned here recently how Alex talks - non stop!!! He will 
never be perfect with his speech but my point is -  that if I had listened 
to the nay-sayers I would never have demanded, had he never had the 
opportunity he wouldn't have succeeded.

You are not asking for anything that would endanger her life, yes she might 
fail, so might we all. But she is no different to the rest of the world - we 
need to learn how to fail to succeed. But she might succeed. But she wont 
succeed if she never has the opportunity.

If they deny her the opportunity to succeed they have failed not just 
Natalia but themselves. Imagine the depth of their success if the also 
succeed, maybe not at talking, maybe like Alex its just learning what 
communication is, but that will be a success beyond all measure.

And ask Penny about that one. I remember when she never thought Devon would 
be able to use PECS either. And yes I did brow beat her (gently) into trying 
it (so did others) - look at Devon NOW!!!

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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