Re: question to parents of 'grown up apraxic kids.

October 13, 2008

Have heart! Shyann's speech may not be perfect but she can usually get her point

across. She has some very close friends, and they are knocking on our door all

hours. It seems impossible to me, but her friends understand her better than

myself at times and don't seem bothered at all by her speech. It's her

personality that they seek, the way she brings out the best in people. So be

sure Cody has that same quality towards others and he'll go far! I was terrified

when she was five as to how she would fit in. I didn't have to worry. I always

let her know how beautiful she is, how smart, how special and how much I love

her. She has even told me to back off on the beautiful compliments and 'I love

you' compliments. She says she knows! (Wish I felt that way as a kid). Cody will

have a better childhood probably than you can imagine. It's us moms who worry so

much!

[ ] question to parents of 'grown up " apraxic kids.

I often look at my Cody & wonder what the future holds for him. For

those of you that have grown up kids, and their speech is still not

" intelligible " (I hate that expression). What are their

accomplishments? What struggles have they had along the way?

My husband & family (yeah, there we go w/ family again), tell me he'll

talk. I try not to hold onto false hope. I call it like I see it,

and what I see is that 5 years of aggressive therapy has really not

amounted to all that much. He can say his name now, but people still

don't get it. (cody).

Just trying to give myself an idea of what the future holds for my

brilliant baby.

October 15, 2008

I too would be interested in this. My son turned five in September and he

too has struggled. He is on fish oils and is doing a regime with a DAN Dr and

he is in speech therapy. He can say a few words, will he ever talk? What age

was your child if he was older than five that intelligible speech started. Jen

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October 15, 2008

Hi Jen,

I, too, am fairly new to this apraxic " stuff " . But I can tell you that I have a

foster child that was 100% non-verbal when he came to me last Jan (2007). He

was 7 1/2 at the time (His DOB is in July). He is now 9 and is up to 12 word

sentences. I just, a few months ago, found out that he has apraxia (I knew he

didn't talk, but the word apraxia didn't come up until this past April - and

that was only verbally from the SP, as I've not seen anything in writing -

something that I want to get.) He had just started talking in the summer of

2007, single words here and there. He learned how to say his name just before

school started - momentous occasion while driving the car I might add. I

started crying (and screamin - " You did it, you did it, you said your name "

etc.)

I started him on the oils at that time (well in May - after I did some research

ie: found this site and read, " The Late Talker " , etc.) He absolutely took off

after that. Most people understand what he is saying, though he isn't perfectly

clear (there are many sounds that he still can't say like J's, and L's, and

he'll still say " F " for the " th " sound, like I " fink " so instead of I think so

and the " w " sound for other beginning word sounds that don't begin with a 'w',

but I can't think of an example right now. He still says, " I is " instead of " I

am " , but then he'll go onto a long sentence. That beats the " me hungry, me mad,

me " ____?? " that he was doing earlier this year - a two word sentence. If you

listen to him and understand the context of what is going on, most people figure

out what he is saying. Sometimes, I have to really think about a word that he

is saying, but 99% of the time, I can figure it out.

He does still have a long way to go, but everybody is completely amazed at how

far he has come in such a short time. I'm in the process of getting a better

diagnosis, seeing a geneticist in January and I want to see a DAN doctor after

we adopt him (and have double insurance.) This site has given me A LOT of hope

and I see the world now open to him!!! He is in a SDC (special day class) and

has been diagnosed as having " global developmental delay " ). By the way, through

the school - he is currently getting SP two times a week, one group, one

individual - both 30 min. each. He gets OT one time a week for thirty min.

Through our insurance - he also gets PT, two times a month each for 30 minutes.

The PT has said that he has global dyspraxia (right?) - as he has a very week

trunk and is very " clumsy " . He has been known to " just be standing there " and

he'll fall over. He didn't trip on anything and he wasn't even walking - but

he'll still

just " fall " . That is happening less and less. (By the way, I'm in the process

of reading " The Out of Sync Child " and want to purchase, " The Out of Sync Child

Has Fun " book.)

I do take him to the park almost everyday and work with him on everything there,

as well as doing oral motor planning exercises with him at night (and other

exercises that require an exercise ball at home). Yesterday at the park, he

almost did the monkey bars by himself. When he came to us last January, he

couldn't even climb into the top bunk (he shook uncontrollably on just the first

step and he could only get to the second step -it was very scary.) We had to

get steps (the Trofast system from IKEA) and install a rail against the wall for

him to get into bed and even that was very difficult for him (We had a four year

old who had to have the bottom bunk-for a whole different reason all together).

Yesterday, he held onto the sliding bar thing where you go from one side to the

other while hanging in the air. He used to not be able to hold himself up at

all. - Now he can not only hold on, but can hold on long enough to slide from

one side to the

other and to " wiggle " his body to get to the very end, since he didn't slide

all the way to the other side - it was incredible to see!!!! - There is always

hope!!!!!

Our kids are little heroes!!!!!

This is a little glimpse into our world - Hope this helps!!!

Blessings to You,

********************************************************************************\

***********************************************************************

Peace I leave with you, my peace I give unto you: not as the world giveth give

I unto you. Let not your heart be troubled, neither let it be afraid.

14:27

Re: [ ] question to parents of 'grown up " apraxic

kids.

I too would be interested in this. My son turned five in September and he

too has struggled. He is on fish oils and is doing a regime with a DAN Dr and

he is in speech therapy. He can say a few words, will he ever talk? What age

was your child if he was older than five that intelligible speech started. Jen

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Dining, Movies, Events, News & more. Try it out

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October 16, 2008

Blessings to you ...for taking in this child!

My son is also adopted though @ birth and he too has apraxia. He is talking

really well now but it's been a long road but one of steady progress for

us.

Vander

Vere

<loveisfosteringh To

ere@...>

Sent by: cc

childrensapraxian

et@... Subject

m Re: [ ] question

to parents of 'grown up " apraxic

kids.

10/16/2008 01:58

AM

Please respond to

childrensapraxian

et@...

m

Hi Jen,

I, too, am fairly new to this apraxic " stuff " . But I can tell you that I

have a foster child that was 100% non-verbal when he came to me last Jan

(2007). He was 7 1/2 at the time (His DOB is in July). He is now 9 and is

up to 12 word sentences. I just, a few months ago, found out that he has

apraxia (I knew he didn't talk, but the word apraxia didn't come up until

this past April - and that was only verbally from the SP, as I've not seen

anything in writing - something that I want to get.) He had just started

talking in the summer of 2007, single words here and there. He learned how

to say his name just before school started - momentous occasion while

driving the car I might add. I started crying (and screamin - " You did it,

you did it, you said your name " etc.)

October 16, 2008

---Thank you for this post. It gives me great hope for the future and

my son is only 3.9 yrs young..! Really helps to read things like this

especially when you feel depressed some times......

Lynne

October 16, 2008

My daughter is younger (3), but I still wonder the exact same thing and

sometimes I feel

so alone in all of this. The other day in the car, my mother asked if my

daughter would

ever learn to talk and all I could say was " I think so " . I would be really

interested in hearing

about other people's experiences as well.

Jen

>

> I often look at my Cody & wonder what the future holds for him. For

> those of you that have grown up kids, and their speech is still not

> " intelligible " (I hate that expression). What are their

> accomplishments? What struggles have they had along the way?

> My husband & family (yeah, there we go w/ family again), tell me he'll

> talk. I try not to hold onto false hope. I call it like I see it,

> and what I see is that 5 years of aggressive therapy has really not

> amounted to all that much. He can say his name now, but people still

> don't get it. (cody).

> Just trying to give myself an idea of what the future holds for my

> brilliant baby.

>

October 16, 2008

What a beautiful story! So much hope:)

October 16, 2008

It's still hard for me to read posts like yours because I hear and

remember the anguish that you are experiencing. It was not but a

very short time ago that I wondered if my son would communicate with

his voice or with a device. He's now seven, far from " grown up' but

closing in on seven and a half as he keeps reminding me! He's

made incredible gains since those days. He's now working

on 'language' with his SLP rather than individual words. And I don't

mind admitting that a couple of times just recently I asked him to

please not talk over me and to say, 'excuse me'. After I said it I

quickly went back to the time sitting at the computer reading about

apraxia and KNOWING that's what he had and sobbing because I thought

my beautiful child would possibly never talk. Then I had to just hug

him and tell him how proud I was of him but he still needed to say

excuse me! lol!

I'll tell you what some incredible people told me at that time - Have

faith, be strong, know without a doubt that you are your child's best

advocate, TRUST your instincts and don't let anyone do anything to

him that you know isn't the best. And most of all, take time for

yourself and actively practice acceptance. Please, please know in

your heart that your child will be wonderful no matter what.

All the very best,

McCann

>

> I often look at my Cody & wonder what the future holds for him. For

> those of you that have grown up kids, and their speech is still not

> " intelligible " (I hate that expression). What are their

> accomplishments? What struggles have they had along the way?

> My husband & family (yeah, there we go w/ family again), tell me

he'll

> talk. I try not to hold onto false hope. I call it like I see it,

> and what I see is that 5 years of aggressive therapy has really not

> amounted to all that much. He can say his name now, but people

still

> don't get it. (cody).

> Just trying to give myself an idea of what the future holds for my

> brilliant baby.

>

October 17, 2008

Truly the most difficult time is wondering what will come and what

will be difficult for your child. My speech delayed child is now 20

and its hard for me to believe that there was a time he was

inarticulate. Fortunately I kept goal sheets from all those years

which I will never show anyone. I had goaled for him to just make a

propted sound. Later, to chime into a song, to say Ma or Da. His

brothers and I used to prompt him with animal sounds, years it

seemed, to no avail. Finally when playing with a toy horse he made a

perfect horsey noise, it all began that day. Something clicked

inside and all the therapy and prompts started working. He is

amazingly articulate now, still a few glitches (they taught him that

by using language he could control his world--and he got very

demanding, re: if he could say it clearly he thought he could have

it!) ,but not much considering the fears we held and the shrugs we

got from authorities in the field.

The joy with these children is that they do some developing every

day, even if its microscopic, it adds up. Best to praise every

effort and the smallest improvements.

Best wishes and prayers to you and yours,

> >

> > I often look at my Cody & wonder what the future holds for him.

For

> > those of you that have grown up kids, and their speech is still

not

> > " intelligible " (I hate that expression). What are their

> > accomplishments? What struggles have they had along the way?

> > My husband & family (yeah, there we go w/ family again), tell me

> he'll

> > talk. I try not to hold onto false hope. I call it like I see

it,

> > and what I see is that 5 years of aggressive therapy has really

not

> > amounted to all that much. He can say his name now, but people

> still

> > don't get it. (cody).

> > Just trying to give myself an idea of what the future holds for my

> > brilliant baby.

> >

>

October 17, 2008

---Thanks for these recent posts about older kids----moms of older

kids, keep the posts coming! I keep these positive posts in my " in

box " to refer to from time to time, my in box must have over 100

emails in it!!

Lynne and age 3.9

In , " infinitevariety2 "

<fireonice777@...> wrote:

>

> Truly the most difficult time is wondering what will come and what

> will be difficult for your child. My speech delayed child is now 20

> and its hard for me to believe that there was a time he was

> inarticulate. Fortunately I kept goal sheets from all those years

> which I will never show anyone. I had goaled for him to just make a

> propted sound. Later, to chime into a song, to say Ma or Da. His

> brothers and I used to prompt him with animal sounds, years it

> seemed, to no avail. Finally when playing with a toy horse he made

a

> perfect horsey noise, it all began that day. Something clicked

> inside and all the therapy and prompts started working. He is

> amazingly articulate now, still a few glitches (they taught him that

> by using language he could control his world--and he got very

> demanding, re: if he could say it clearly he thought he could have

> it!) ,but not much considering the fears we held and the shrugs we

> got from authorities in the field.

> The joy with these children is that they do some developing every

> day, even if its microscopic, it adds up. Best to praise every

> effort and the smallest improvements.

>

> Best wishes and prayers to you and yours,

>

> > >

> > > I often look at my Cody & wonder what the future holds for him.

> For

> > > those of you that have grown up kids, and their speech is still

> not

> > > " intelligible " (I hate that expression). What are their

> > > accomplishments? What struggles have they had along the way?

> > > My husband & family (yeah, there we go w/ family again), tell me

> > he'll

> > > talk. I try not to hold onto false hope. I call it like I see

> it,

> > > and what I see is that 5 years of aggressive therapy has really

> not

> > > amounted to all that much. He can say his name now, but people

> > still

> > > don't get it. (cody).

> > > Just trying to give myself an idea of what the future holds for

my

> > > brilliant baby.

> > >

> >

>

October 17, 2008

I am so sorry to laugh at your post, but that line about " and he got

very demanding, re: if he could say it clearly he thought he could

have it! " really got me. I was so happy to see my son ask properly, I

was bending over backwards to give him what he wanted. Oops. Needless

to say, I now tell him I appreciate him asking, but the answer is

still no.

To the original poster: I feel your pain. When I first got his dx, I

felt the same... it was very upsetting to me to explain to my family

that some kids " recover " perfectly, and some never speak, and you

don't know how they'll end up until they get there. My son is moving

along great - he went from 3 sounds to tons of words and phrases in

about 9 mos. Of course, they're still very garbled, even I can't

understand half the time (and with family or strangers, maybe 25% in

context, nothing out of context), but I consider him a work in

progress.