Donnell/Liz

[Guest guest]

<<But sometimes even when there is some language you are still left

wondering what is going on in their heads! Donnell (Mom to DJ age 11)>>

Hi, Everyone...Donnell....Gareth would be in this category. He can talk and

has a super vocabulary, but it's rarely spontaneous speech and only 2-3

words at a time.......not really a sentence. I realize this is better than a

non-verbal kid, but it is still not 'normal' compared to a regular child with

only DS. I have 3 friends here with 'regular' DS kids and it soooooooooo

frustrating listening to them talk and carry on long conversations with me. I

know

a bit of jealously twitches through me....that and sadness for Gareth. I

have to ask the questions....... " How was school today? " " Fine " ...that's all

he will say!!!. " Does your head hurt, ears, etc " " No " ....even though there

will be puss coming from his ears. " Do you want this or this? " , etc. We

still have the dictaphone that goes back and forth each day because he will not

offer or relay any information freely.

<<she still cannot express herself appropriately at times, she acts out and

I get crazy with her. This part makes me nuts because Iknow kids who are

non-verbal act out due to their lack of communication skills and accept that as

part of their being. The fact that she is so verbal, but behaves as if she

is not at times is very hard to grasp and I feel so guilty at

times when I get angry with her. Liz>> Liz.....Gareth is

18 and is just learning to say " I am mad " " I am tired " " I don't want to

do that " etc.....he, too, would act out or shut down whenever he was angry,

tired, or just didn't want to do something. He could not express his emotions

and still has a hard time with it. I know that he gets upset when I don't

understand what he is saying and he spells the word wrong.......he just shuts

down " Never mind " he says. It is heartbreaking at times.

Take care, Everyone.

Margaret

[Guest guest]

You are so right Margaret. And so very frustrating for all of us.

Liz

Donnell/Liz

<<But sometimes even when there is some language you are still left

wondering what is going on in their heads! Donnell (Mom to DJ age 11)>>

Hi, Everyone...Donnell....Gareth would be in this category. He can talk and

has a super vocabulary, but it's rarely spontaneous speech and only 2-3

words at a time.......not really a sentence. I realize this is better than a

non-verbal kid, but it is still not 'normal' compared to a regular child with

only DS. I have 3 friends here with 'regular' DS kids and it soooooooooo

frustrating listening to them talk and carry on long conversations with me. I

know

a bit of jealously twitches through me....that and sadness for Gareth. I

have to ask the questions....... " How was school today? " " Fine " ...that's all

he will say!!!. " Does your head hurt, ears, etc " " No " ....even though there

will be puss coming from his ears. " Do you want this or this? " , etc. We

still have the dictaphone that goes back and forth each day because he will

not

offer or relay any information freely.

<<she still cannot express herself appropriately at times, she acts out and

I get crazy with her. This part makes me nuts because Iknow kids who are

non-verbal act out due to their lack of communication skills and accept that

as

part of their being. The fact that she is so verbal, but behaves as if she

is not at times is very hard to grasp and I feel so guilty at

times when I get angry with her. Liz>> Liz.....Gareth is

18 and is just learning to say " I am mad " " I am tired " " I don't want to

do that " etc.....he, too, would act out or shut down whenever he was angry,

tired, or just didn't want to do something. He could not express his emotions

and still has a hard time with it. I know that he gets upset when I don't

understand what he is saying and he spells the word wrong.......he just shuts

down " Never mind " he says. It is heartbreaking at times.

Take care, Everyone.

Margaret