A chance to voice concerns

[Guest guest]

Hello!

I have been a member of this group for quite some time. I've been active at

some times, but mostly just lurking. I've gotten a lot of support from

people on this group. In fact, looking back, I don't know how I would have

gotten where I am, support-wise and knowledge-wise, without the group.

My husband and I have 6 children. They're all terrific. I have an 8 year

old son who is apraxic and dyslexic, a 6 year old son, apraxic, 4 year old

daughter who is epileptic. (the 2 older don't have any special issues,

thankfully) The youngest child, now 21 months is concerning me. He doesn't

speak very much. He makes babbling noises. Sometimes he acts like he

thinks he talking in sentences but nothing is understandable and I haven't a

CLUE what he is saying. He only has about 4 words that he says on a daily,

regular basis. Frustrations are mounting for all of us. I've been through

this before...It brings tears to my eyes when I look at this beautiful baby

who won't speak to me. He'll say " mama " and " dada " on a regular basis. The

only other thing he says regularly is " an so " (want some) but only when he

is asking for a vitamin C not when he wants a drink or anything else, even

with prompting. I taught him to sign hungry and he did this for awhile but

now he won't do it at all. He just cries and gets frustrated with me when I

don't understand or guess right.

I've talked with my husband about speech and he thinks we should wait til

he's 3. That would be another year. After reading the first chapter or two

of " Late Talker " I wonder about the wisdom in that. I think I'll let him

read the book too and see what he thinks.

I haven't tried the fish oils with him. I tried them with my other boys and

didn't see any changes. I don't know...maybe I didn't give it enough time.

I kind of feel as though I'm on this ride again. Does anyone else feel that

frustration? I look back at my apraxic boys and it makes me sad how much of

their early childhood I missed because I couldn't understand them.

Ok, I've cried enough. At least for now. Thanks for listening...

Sheryl B

[Guest guest]

Absolutely don't wait! Get him evaluated by EI in your state. Work on

getting him speech therapy (and evaluated for OT). Ask your pediatrician for

a referral to a developmentalist (hopefully one who has heard of apraxia).

Earlier is better. Less than 10 words by 18 months, or 50 words (or no

2-word sentences) by 24 months is reason for urgent referral for

developmental assessment. A lot of progress can be made in a year. You

already have apraxia experience. Early and frequent speech therapy is key.

Also start omega supplements. Our SLP has said it is much easier to start

working with apraxic kids while they are still very young and with few

words - then to undo the unintelligible words that become part of their

vocabulary. Interesting to watch as well - since it took over 10 sessions to

undo " lala " for ball in my son. Repetition is so important for apraxic

children to learn, but learned repetition of errors are also very difficult

to undo. Do you alreay have a SLP working with your older kids?

[ ] A chance to voice concerns

Hello!

I have been a member of this group for quite some time. I've been active at

some times, but mostly just lurking. I've gotten a lot of support from

people on this group. In fact, looking back, I don't know how I would have

gotten where I am, support-wise and knowledge-wise, without the group.

My husband and I have 6 children. They're all terrific. I have an 8 year

old son who is apraxic and dyslexic, a 6 year old son, apraxic, 4 year old

daughter who is epileptic. (the 2 older don't have any special issues,

thankfully) The youngest child, now 21 months is concerning me. He doesn't

speak very much. He makes babbling noises. Sometimes he acts like he

thinks he talking in sentences but nothing is understandable and I haven't a

CLUE what he is saying. He only has about 4 words that he says on a daily,

regular basis. Frustrations are mounting for all of us. I've been through

this before...It brings tears to my eyes when I look at this beautiful baby

who won't speak to me. He'll say " mama " and " dada " on a regular basis. The

only other thing he says regularly is " an so " (want some) but only when he

is asking for a vitamin C not when he wants a drink or anything else, even

with prompting. I taught him to sign hungry and he did this for awhile but

now he won't do it at all. He just cries and gets frustrated with me when I

don't understand or guess right.

I've talked with my husband about speech and he thinks we should wait til

he's 3. That would be another year. After reading the first chapter or two

of " Late Talker " I wonder about the wisdom in that. I think I'll let him

read the book too and see what he thinks.

I haven't tried the fish oils with him. I tried them with my other boys and

didn't see any changes. I don't know...maybe I didn't give it enough time.

I kind of feel as though I'm on this ride again. Does anyone else feel that

frustration? I look back at my apraxic boys and it makes me sad how much of

their early childhood I missed because I couldn't understand them.

Ok, I've cried enough. At least for now. Thanks for listening...

Sheryl B

[Guest guest]

,

Thanks for your email and encouraging me to do what I know that I must.

Yes, my older boys have a speech therapist in school. She's terrific.

However, I hate to say it, but I get pooh poohed a lot because he's the

youngest in a large family and a boy. (Not from the therapist, I haven't

spoken to her specifically about him but I have to her assistant. Yikes) I

know in my gut though that something is amiss and not quite right. I don't

know whether I can get a referral from the pediatrician. He pooh poohed me

when the 6 year old was about 2 and wasn't willing to do anything about

referrals until the child had a mouth full of cavities because he couldn't

tolerate brushing his teeth (well, there are some genetics, too, but at the

time he'd choke and gag everytime we tried to brush his teeth) and had to

have surgery to fix them all. There is a children's hospital close by and

they take parent referrals. I did a parent referral with another child.

I'll have to think about doing this, too.

Thanks again, .

Sheryl

--------------------------------------------------------

Absolutely don't wait! Get him evaluated by EI in your state. Work on

getting him speech therapy (and evaluated for OT). Ask your pediatrician for

a referral to a developmentalist (hopefully one who has heard of apraxia).

Earlier is better. Less than 10 words by 18 months, or 50 words (or no

2-word sentences) by 24 months is reason for urgent referral for

developmental assessment. A lot of progress can be made in a year. You

already have apraxia experience. Early and frequent speech therapy is key.

Also start omega supplements. Our SLP has said it is much easier to start

working with apraxic kids while they are still very young and with few

words - then to undo the unintelligible words that become part of their

vocabulary. Interesting to watch as well - since it took over 10 sessions to

undo " lala " for ball in my son. Repetition is so important for apraxic

children to learn, but learned repetition of errors are also very difficult

to undo. Do you alreay have a SLP working with your older kids?

[Guest guest]

HI sheryl- if he is trying to talk i think a speech language pathologist

might be able to help him. it worked for us, it was not easy and encouragement

is

a big plus. i did evereything i could to help josh talk but i needed that help

from the slp because we had no spontaneous talk or babbling, after 2 years

josh has improved to the point that he has gone from being 20-25% intelligible

to 80% intelligible and speaking hundreds of words , snd from a severe to

profound speech language disorder to a mild to moderate speech language

disorder,

its alot of hard work. we tried fish oil but josh quit eating his very limited

diet, we are currently doing food approximations to increase his diet. he

starts all day kindergarten in the fall and it will be half day special ed and

half day mainstream, josh has friends, he can communicate and he is learning to

try new foods. instead of going by a certain age i went by his desire to

communicate and if the desire was not there we would try to entice him to

communicate through positive reinforcement- do what you feel in your heart is

best

for your child and do what you have to do - charlotte henry

[Guest guest]

You can self refer to early intervention and get started. They do a pretty

comprehensive evaluation. Its just getting the appropriate therapists that

is hit or miss. Good luck. -

Original Message-----

From:

[mailto: ]On Behalf Of Sheryl Buchheit

Sent: Friday, March 10, 2006 9:19 PM

Subject: [ ] RE: A chance to voice concerns

,

Thanks for your email and encouraging me to do what I know that I must.

Yes, my older boys have a speech therapist in school. She's terrific.

However, I hate to say it, but I get pooh poohed a lot because he's the

youngest in a large family and a boy. (Not from the therapist, I haven't

spoken to her specifically about him but I have to her assistant. Yikes) I

know in my gut though that something is amiss and not quite right. I don't

know whether I can get a referral from the pediatrician. He pooh poohed me

when the 6 year old was about 2 and wasn't willing to do anything about

referrals until the child had a mouth full of cavities because he couldn't

tolerate brushing his teeth (well, there are some genetics, too, but at the

time he'd choke and gag everytime we tried to brush his teeth) and had to

have surgery to fix them all. There is a children's hospital close by and

they take parent referrals. I did a parent referral with another child.

I'll have to think about doing this, too.

Thanks again, .

Sheryl

--------------------------------------------------------

Absolutely don't wait! Get him evaluated by EI in your state. Work on

getting him speech therapy (and evaluated for OT). Ask your pediatrician for

a referral to a developmentalist (hopefully one who has heard of apraxia).

Earlier is better. Less than 10 words by 18 months, or 50 words (or no

2-word sentences) by 24 months is reason for urgent referral for

developmental assessment. A lot of progress can be made in a year. You

already have apraxia experience. Early and frequent speech therapy is key.

Also start omega supplements. Our SLP has said it is much easier to start

working with apraxic kids while they are still very young and with few

words - then to undo the unintelligible words that become part of their

vocabulary. Interesting to watch as well - since it took over 10 sessions to

undo " lala " for ball in my son. Repetition is so important for apraxic

children to learn, but learned repetition of errors are also very difficult

to undo. Do you alreay have a SLP working with your older kids?