Re: Re: Communication, communication, communication

November 12, 2004

I can only echo everything Michele said. Kate, I think, started out with

stone age parents, i.e., without knowing it, we were caught in the total

communication vs. oral only dispute. This only hurt . Everyone said

that she would be able to use oral language; her St. Louis (now famous)

ENT said that she would have at least 80% normal hearing as an adult.

Only one person, a psychologist friend of Andy's brother who came by our

place in Florida one summer, said that the only thing that mattered was

getting communication into . We knew that, I think, but our local

professionals, and even those at Childrens' Hospital in St. Louis, were

clueless.

Even when Andy, I, and our then ten-year old daughter took sign

classes, we were just dumb. I'd practice fingerspelling, in the back

seat (K. must have been @ 5 by then), while waiting to get from

school. In the rear view mirror, I watched doing the same thing. I still

didn't get it. Later, with a beloved speech therapist, signed " f " and

pointed to the floor (she could still hear then), " r " and got a rock, etc.

Now, has lost all hearing despite careful medical care. If we hadn't

started sign, I cannot imagine where we'd be today. If we had had any

sense, we would have started in infancy. I've learned not to kick myself for

very much of what has happened, but this will nag me forever. If I started

all over again, I'd use sign, oral language, mime, pictures, written words,

body language - absolutely everything.

Another soapbox --- I apologize ---Martha

November 12, 2004

Martha,

I tell you, with my boys the learning curve never ends. Just when I think I

have the special ed system figured out, or I think we are providing the

right interventions something new comes up. ly I have no idea on how

to handle the current situation with my oldest. If it weren't for people

who had been there done that, helping us along, our kids would suffer even

more while we figure it out. Overall what I have learned with Tyler has

helped me get the right services for Dylan, but Tyler is the one I have

major regrets about how we handled some things.

I for one am glad you share and I hope you don't beat yourself up too bad.

We started signing with Dylan as an infant and he is 8 and still doesn't

sign, so maybe it wouldn't have mattered.

On total communication I have some concerns, sometimes I think it is a cop

out - no commitment to anything. I agree that they should be exposed to

multiple forms of communication, and I really think many kids benefit from

sign, but with our kids teachers had better have a plan. Exposure to a whole

bunch of stuff that doesn't make sense is useless. With a deafblind child,

expecting them to pick up on any language, just through exposure is

ridiculous. There are some that pick up language easily, but for many it

takes a lot of focused attention to teaching it.

The goal is communication in whatever way makes sense to the child, which

requires exposure, a plan, and consistency. As much as the experts can

debate, the kids will let you know what makes sense to them. We had been

using objects, and tried pictures, but then suddenly we had tactile cues for

two things and that clicked for him (just abstract textures to represent

different places). New adults were confused by what meant what, but with

just two exposures to a new tactile cue, then Dylan would know it. It is a

hard system to expand, but it was needed for a couple of years, before he

moved up to pictures. All the time we are still focusing on visual and

tactual sign, but just putting him in a signing environment is not enough.

Kim