Re: intro. and ask for help :o)

July 10, 2004

Hello ,

I'm always so pleased to see teachers participate in this list. It

really can be helpful to all of us to collaborate in this way. :-)

Our third child, Kendra, waws born with CHARGE. When she entered

kindergarten she had manual spelling (finger spelling)as a form of

expressive communication, and very little formal receptive language.

She had not been responsive to oral and cued speech techniques.

Later we learned that in addition to the deafness, verbal apraxia

was affecting her ability to express herself orally. Then we

learned that limb apraxia affected her ability to express herself in

sign! And all of this was additionally impacted by hard to define

difficulties with visual processing. It seemed that nearly avenue

to acquiring language was closed at that time. Since she was then

able to start using language more effectively with proper

approaches, I decided that the standard statements given about the

*language window of opportunity* closing at age 3 were not going to

have a place in our mindset.

My suggestion to you would be to identify ways that the little guy

may be able to understand and use language and then dive in full

force to give every support posssible. He may only have a few signs

presently for a number of reasons, but if they are anything like

what we observed with Kendra, intensive 1:1 language support can be

a great help. It's possible also, though, that the reasons he has

limited language currently are not at all the same as for Kendra.

In kindergarten, Kendra's teacher and speech therapist introduced

the PECS system which showed them nearly immediately that while

Kendra couldn't express herself clearly at that time, having access

to picture communication gave her access to another way to

communicate. She has built on that over the years and even now,

sometimes uses PECS to communicate. The difference is that now

instead of pictures or symbols on the PECS cards, there are written

or typed words.

Kendra's difficulties with language appear to be similar to some

other children with CHARGE and different from some others. To put

her issues in a nutshell, I would say that she has expressive and

receptive language disorder, along with pragmatic language disorder

and limb apraxia. Again, all of these conditions are greatly and

detrimentally affected by visual processing and/or cortical vision

impairments.

Kendra is profoundly deaf and has small chorioretinal colobomas.

Because nearly all learning will be affected by a child's

comprehension and use of language, focusing on that aspect of

development will offer many rewards. In my mind, identifying the

problems can get us part way to the solution.

Best wishes as you work with the new student; I'm so glad you are a

part of the list. As a former teacher of English as a Second

Language, I have always found language to be very, very

interesting. Kendra has taught me worlds on the subject.

Don't hesitate to ask questions either on-list or off.

wkeedy@...

Mom to Kendra, and Camille

Southern California

> Hi Folks,

>

> I signed up for this list serv a few days ago and already I've

> learned some things so thank you all very much! I'm a Special

> Education teacher in a small town in northern BC, Canada. A

little

> boy diagnosed with CHARGE syndrome will be starting Kindergarten

at

> our school in Sept. I have been lucky because the intervener who

> worked with him in Preschool is a very good friend of mine so she

has

> been giving me a lot of information and I've taken a course

> (Introduction to Deaf/Blindness) just last week but I'm still

> wondering about some things. My student will be going into a

> Kindergarten class with some pull-out to work with either me or

his

> intervener or both. Oh yeah and all those specialists that will

be

> coming to work with him too! Our little guy is deaf and legally

> blind, non-verbal, knows maybe 3 signs (sign language), uses a

walker

> for shorter distances,and is tube fed. Our OT has made sure that

a

> lot of the physical adaptations that need to be done have been

done.

> But I'm curious about programming. I figure that no one is more

of

> an expert on CHARGE syndrome than a parent. Soooooo if my student

> was your child, what would you like to see as part of his school

> program? I realize that all programs and needs are individual but

> I'm thinking that your suggestions could at least get me started

> before all the consultants get involved )

>

> Thank you very much in advance for your help. I don't believe in

> reinventing the wheel so I'd like to learn from your experiences.

>

> Resource Teacher

> BC, Canada

July 10, 2004