Re: [SPAM] RE: Downs-Gleason - communication

[Guest guest]

To -

Adam has a significant vision loss and mild hearing loss. We are not too

concerned about the hearing loss because it doesn't seem to really be an issue

for him - he has always been quite the little talker and can repeat complicated

words or phrases clearly after hearing them only once.

About 6 months ago I brought up my concerns about Adam's behavior to several

people involved with him.

His vision therapist was obviously frustrated by his lack of cooperation with

her therapies and so we had a little bit of discussion about it. She said that

she had noted the " autistic-like " behaviors and wasn't' quite sure what to make

of them but STRONGLY advised us to " not go down that road " . She said that she

researched it a bit and that lots of kids with sensory impairments have not

typical behaviors that might be classified as autistic like - but may be a way

for the child to cope with the strange stimulation or lack of stimulation that

the child is trying to interpret - which makes sense. It also makes sense as to

why these kiddos can get so frustrated when we are asking them to respond in a

typical way but they can't see, hear or understand what exactly we are asking or

the way that we are asking it.

Her concerns with going down the autism route were that CHARGE is considered a

medical condition and treatments, education etc can have goals directed towards

those issues. Whereas autism changes the way that therapies are paid for (by

insurance, etc) and made available.

My aunt, also an audiologist who works with special needs kiddos strongly felt

that our son is a very gifted (I liked that part ) 3 year old with sensory

impairments that make his interpretation of the world difficult and different

than ours. She said that his difficult behaviors may just be amplified because

he is 3 and the world is full of drama for all 2 and 3 year olds. She suggested

that we try and identify the triggers for his behaviors and determine if there

is something that seems to turn them off too.

We had a really tough spell a couple of months ago and we were just about at our

wits end, we had discussed things with several people that knew more than us and

people we trusted. We even contacted his pediatrician to see if she had any

suggestions. After some time to mull it all over and get settled down, his

behaviors actually started to settle down and although not totally resolved,

they are a times better and so we are at the wait and see point.

I would recommend that you find counselors, therapists and others that you trust

and discuss it with them - you too may find that as Luke ages, he will mellow

out a little bit and you can help him find ways to adapt.

Good luck - keep us posted!

Anne (mom to Adam 3 CHaRGE and 1 TROUBLE)

RE: Re: New CHARGE mom with questions

Hi,

I have been lurking, but have not introduced myself

yet. My name is and I am a special education

elem school teacher working with children with

multiple disabilities. One of my students is a little

girl with undiagnosed CHARGE. Her mother and I both

agree that she has it, but it was too expensive to get

the testing done.

Anyways having worked with all ages of kids I will

tell you that having no communication skills will

almost always lead to a depression of cognitive skills

and behavior problems. Children get to an age and

they need to make they wants and needs known to

others. If they cannot get this done in an effective

way, you start to have problems. This is why we used

" total communication " in our classrooms, especially

our preschool classrooms. We use sign, pictures,

devices as well as oral speech.

I have used sign language with all of my students,

for at least 14 years now. It has actually increased

the amount of oral language we have gotten from the

students. If the child is going to become an oral

speaker, the sign just becomes a secondary mode for

them to get and give information, something that

children with developmental delays benefit from.

Please, use everything you can to help your child

communicate with you. Use sign language, use pictures

and oral speech. The sooner, the better. People are

even begun using sign language with typical infants to

increase their cognitive skills.

There, off of the soapbox,

thanks for reading.

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[Guest guest]

Ann,

What you wrote was just wonderful. Nice job.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to