Re: Digest Number 1444

June 11, 2004

Mark's birthday is August 16. When he was not yet two, he also babbled but

didn't speak so we taught him sign language. Shortly after his second birthday

he got the hang of speaking and once he did he had all the vocabulary he'd

learned to sign also! Today he doesn't remember any sign language, but we're

still grateful for how it helped fill in his language until he was ready to

start talking. By the way, he turns 18 this summer, so hang in there the time

passes before you know it. The toughest part is there are no crystal balls to

let you know how things are going to work out! Looking forward to meeting

everyone at the conference. How many of us are going to be there?

Sharon Kaye

Occupational Therapist, and parent

June 11, 2004

Hi,

We had the same problem, and learnt signs to help with the

frustration that had when he couldn't comunicate verbally. He

is now 6, 7 in October, and I'm happy to say, that when we called in

to my girlfriends house after school this afternoon for the girl to

try on some new dance costumes, my friends 5 yr old daughter was

standing on the stairs in a sparkly red sequinned outfit.

jumped out of the car with a big " Oh la, your beautiful!!!! "

He still has a babyish sound to his voice, but its all there lol.

So just hold on and hang in , and it will come.

Also need to also brag, sorry, his teacher jumped at me this arvo as

we were leaving and ran in to get his spelling and dictation test

book, for the weeks words..he got nearly 100% in both!!!! This is

only two weeks ago her saying that he is ok during the spelling

section, but loses concentration in the dictation...so thats

improving too..but his teacher was so excited that it made me feel

even better than just knowing he did well.

I woud also like to welcome all new members too, and congratulations

on all the new little dears you all have, and if I don't manage to

post again before the convention next week, I hope you all have a

wonderful time meeting up, and to a job well done to everyone that

has been involved in setting in up. I wish i could've come. Make

sure someone gets some photos and we could probably do something on

the website for it..

Cya

. mum to 6mds and miss emily,4,,,umm maybe 14 more like it

this week....

> I just wanted to send a quick note to say that I am looking

forward to the

> conference. My son Joe will be 2 in August and he is not

speaking. He can

> say dada and uhoh and I think he's making some attempts at yeah,

eat and

> read but it's hard to tell if it is a meaningful sound or just a

yelp of

> excitement (which we love also). Anyway, I'm getting so

discouraged about

> him not being able to speak. I feel like it is all I think about

these

> days. We have speech twice a week and I do all I can do try

everything to

> encourage sounds. I know that speech is a common delay with MDS.

He makes

> great sound effects for cars, trucks etc and loves to make great

sounds

> while he's playing. I feel like it's coming but he had several

sounds at 12

> months that he no longer produces (b sound specifically).

>

> Any words of wisdom? What is the average age for speech in MDS

kids?

>

> Thanks,

>

> Mom to Joe MDS

June 11, 2004

If it is of any encouragement to all of you parents with young ones

concern about your child speech, hang in there. Our Luke had his own

language (full sentences) which none of us could understand except for a

few words until about age 4 and half. At age 4 he tested out at the

level of a one year old. Some where between the age of 4 and 5 - over

night he started to talk complete sentences and has not stop talking

non-stop since then. Luke will be 22 on Father's day June 20. He loves

to " debate " on any issue just give him a little time to do research on

the subject and you will learn alot from him. My sisters all laugh

because Luke has given us all an education which we would have not

received without him. Sometimes it is not on subjects we really do not

want to engage in.

I wish all you conference goers best of luck, safe traveling and a

bundle of fun. Take time to celebrate life with one another. Carol

momx5 and to Luke, mds for almost 22 years.

June 12, 2004

I just wanted to send a quick note to say that I am looking forward to the

conference. My son Joe will be 2 in August and he is not speaking. He can

say dada and uhoh and I think he's making some attempts at yeah, eat and

read but it's hard to tell if it is a meaningful sound or just a yelp of

excitement (which we love also). Anyway, I'm getting so discouraged about

him not being able to speak. I feel like it is all I think about these

days. We have speech twice a week and I do all I can do try everything to

encourage sounds. I know that speech is a common delay with MDS. He makes

great sound effects for cars, trucks etc and loves to make great sounds

while he's playing. I feel like it's coming but he had several sounds at 12

months that he no longer produces (b sound specifically).

Any words of wisdom? What is the average age for speech in MDS kids?

Thanks,

Mom to Joe MDS

June 14, 2004

,

I am new to the group. I have enjoyed reading all of the emails from all of

the parents. Boy, does it take me back listening to the new parents. My advice

is enjoy every second. It goes by sooooo fast.

My daughter, (mds) is 21 years old now. She was very frustrated

because of not being able to communicate. I had heard that if she learned sign

language that she may never talk. We didn't listen to that advise and taught

her and the whole family sign language. We started with the words that she

wanted to communicate, such as more cookie, milk, go, Mama, Daddy, etc. and we

made up a sign for her name and her sister's name. Then we kept adding words.

It was a lot of fun. Before we had learned a whole lot of the signs, she had

such a calmness about being able to communicate, one day she just started

talking. We only used signs in large groups when we were across the room from

each other. (very convenient) We started the signs at the age of 2 or 3 (I

really can't remember). It all happened so fast, it is just a blur. She is now

doing public speaking. Her speech is a little bit slurred due to braces, but

like the other parents have said, just be patient and enjoy the moment. It will

come. will be speaking at the conference. My goal in her speaking

engagements is to encourage young parents like yourself to see what's down the

road. We didn't have a clue. We had no mds groups, no emails and no role

models in our area. I have to say is the most wonderful human being I've

ever know-- full of humor, wit, compassion, surprises, patience, love, &

ambition. I could go on and on. She is my BEST friend.

Back to the subject, try a little signing. I'm sold on it. And get the

speech therapy 5 days a week if possible. We had to fight for that, but we did

get it.

I look forward to meeting and getting to know everyone at the conference. See

you there.

mother to (mds 21 yrs), Audry (23 yrs) and wife to Charlie