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Children - Special Needs Community
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Have any of you been in contact with the Institute for the Achievement of Human Potential?

Have any of you been in contact with the Institute for the Achievement of Human Potential? A person can request a free copy of a very short DVD that has the stories of three children who have the same kinds of challenges that you all talk about in this forum. It's a super DVD. So far, I have only worked with one special needs child, but I was able to show the mother this DVD last week, and I think it might have helped her see him in a new light. My goal is to work with more special needs children and their families, but I want to do really well with this one, first. Good luck, all of you, with everything, and if anyone has any advice for me, I would appreciate it, because I am new and just starting out. But I'm so impressed with these kids and their families!

Oh, P.S. The one that I'm working with, a boy who's just turning seven, can't talk or walk, and he's on a feeding tube. He can't sit up for very long without slumping over, and he doesn't really like tummy time. But on his stomach, he can lift his head, and now he moves his arms and hands and legs more (a goal of the occupational therapist), and he likes to have little tastes of soft things while he's on the feeding tube, just as if it's a regular meal. He communicates, but his family is so afraid to hope, that they're in denial, so unless it's a really clear thing, they just think it must be a random motion. His eyes don't track together very well, but he likes to play games that make him follow something with his eyes from place to place. On the plus side, his hearing is very sharp, but it's hard for him to get anyone's attention off of him long enough for him to alert them that someone's at the door. Usually the dog barks first, but my goal is to be able to understand him well enough to be able to say, oh, thanks, is someone at the door? before the dog even notices.     :)     That's how sharp his hearing is. He has Cockayne's syndrome, and my lifelong goal, now, is to find a way to work with other children of the following four rare genetic disorders: CFC, Cockayne's, Costello syndrome, and Noonan's syndrome. Thanks for listening, and good luck with all of your families and children!
3 Responses
535822 tn?1443980380
I just read this and thank you so much for posting it up I am sure many will be interested I help on pediatrics and always being asked questions be good to know where to refer parents .I am wondering if you could request a forum or group .on Med Help ...
Avatar universal
Thank you for this message back, and supportive comments! This was my first post. Tell me how to request a forum or group, up here, and I'll ask the Institute. I'm sure they'll be glad to, or maybe they'll let me.

I talked to a parent recently who knows about the Institute, and has taken the training for parents, and he told me that he would be glad to talk by phone to anyone who would like to know more about what the training is like. He is kind and gentle, and would be great to talk to. But I don't know how to put him in touch with anyone, up here.

Also, Nathan said "hi" to me by sign, for the first time, yesterday! It was at a party that the Lollipop Foundation held. The Lollipop Foundation is for all special-needs kids, so it was a mixed group, and it was very freeing. The best party I've ever been to!

Now I know how parents feel when they keep signing, waiting for their child to sign back to them, and finally their child does! What a super feeling!

Thanks very much for the reply. It's nice to have someone to talk to.
535822 tn?1443980380
wWth the groups  go to the forum page and look to your right, you will see where it says groups ..click on it, you should see where it says start a group, then let everyone know there is a new group going .The forums are chosen by mh so you would have to contact and go through them.
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