Not knowing where you belong

[Guest guest]

For years I have sat on autism lists, thinking that we don't

belong there, but some of the children do sound like my son.

I cannot say the only thing wrong with him is lack of speech,

but certainly by far it is the main thing. Yet, he can talk, he has

talked, and when he could, he said incredible things. I am not even

sure that he wants to talk. This is going to sound really crazy,

but I think it hurts him to talk.

I talked with his neurosurgeon and asked him if there could be

something wrong with his vocal cords, but he said that his

voice has rhythm so they were fine.

We used this drug once, and it had been used before for those

who stutter, and after two days, he his voice got scratchy,

and he began doing a lot of throat clearing, and he started

all of a sudden saying " hi " , and he ran around repeating that

and laughing. As if he just realized that he could make words.

I don't understand verbal apraxia, but I know he has the language,

he just cannot speak. And I don't know where we belong. One thing

that I am sure about is therapy doesn't work. If I had a nickel

for every speech therapist that told me that, we would be rich.

And the worst thing about that is I know it doesn't work. For

two years I listened to ABA consults tell me that I wasn't doing

the therapy correctly, and I even told that to some of the

speech therapists he was seeing, but then one day I attended a

demonstration, and left out of there crying, because we had

been doing the therapy correctly. Is there something that

might hurt someone to talk, something that might be causing

it?

Best,

[Guest guest]

Hi

Your post absoloutely makes sense to me . I used to think that people

were afraid of labels but now I realise they are simply trying to

recognise their own child in a defined conition or group of symptoms

so that they know what they are dealing with .

My son can talk but his autistic symptoms make it hard for him . I

realise that sometimes it was because he did not feel the need , did

not want to . At other times he was scared because language is

communication and when you communicate with someone it demands things

of you . If people speak to him in the street he is perfectly

capeable of speaking to them but will point and gesture at them to go

away - the experience of that communication is just too much for him

at times. This took me ages to fuigure out because he would not look

in the slightest bit upset or frightened and it just seemed lazy or

defiant. When he first started sliding into autism , when he first

lost his speech he was even like that at home and , again , he didn't

seem emotuional he would just ignore us or gesture at us. All of this

behaviour has gone now but it was such a puzzle. I don't know if your

child could be experiencing pain but I have come to realise that as

mums we should often follow our instincts.

By the way , even if your son has little shadows of autism in his

bahaviour that dosen't define him or what he is struggling with ( it

dosen't make him autistic any more than trainspotters - what an

autistic trait that is -!!!!) - it just might help give you some

other ideas or treatments to try .

I hope you figure this one out - and don't give up because ABA dosn't

help - it didn't help my son either and he IS autistic ...and we were

doning it properly too !!! You will find something to help . Charlie

didn't speak until some of his treatments finally kicked in at nearly

five - after two and a half years of trying !

n @y..., Carlton <carltonl@c...> wrote:

> For years I have sat on autism lists, thinking that we don't

> belong there, but some of the children do sound like my son.

> I cannot say the only thing wrong with him is lack of speech,

> but certainly by far it is the main thing. Yet, he can talk, he has

> talked, and when he could, he said incredible things. I am not even

> sure that he wants to talk. This is going to sound really crazy,

> but I think it hurts him to talk.

> I talked with his neurosurgeon and asked him if there could be

> something wrong with his vocal cords, but he said that his

> voice has rhythm so they were fine.

> We used this drug once, and it had been used before for those

> who stutter, and after two days, he his voice got scratchy,

> and he began doing a lot of throat clearing, and he started

> all of a sudden saying " hi " , and he ran around repeating that

> and laughing. As if he just realized that he could make words.

> I don't understand verbal apraxia, but I know he has the language,

> he just cannot speak. And I don't know where we belong. One thing

> that I am sure about is therapy doesn't work. If I had a nickel

> for every speech therapist that told me that, we would be rich.

> And the worst thing about that is I know it doesn't work. For

> two years I listened to ABA consults tell me that I wasn't doing

> the therapy correctly, and I even told that to some of the

> speech therapists he was seeing, but then one day I attended a

> demonstration, and left out of there crying, because we had

> been doing the therapy correctly. Is there something that

> might hurt someone to talk, something that might be causing

> it?

> Best,