Re: when did your child become able to talk with you

[Guest guest]

Hi................

My daughter is now 6 years old. She started to talk when she was 3 and

walked at 19 months. We have been able to have conversations sence she was 4

years old . She has mds and is doing very well with it . Peole are just

surprised

how well she is doing. She does have a slight learning disability and she is

very little for her age.

Maureen Mother of 6 year old with MDS and I have MDS also

[Guest guest]

This may be a really silly question, but got to ask! My daughter is 18 months

and is in size 6 diapers. What did you all do when your child wasn't potty

trained until 3 or 4? Where do you get diapers to fit?

Alice Poholsky

cell

[Guest guest]

My is a year younger than Emerson (3 on July 30) now almost 2 1/2. I am

also greatly concerned about his speech. He really has no words yet just a

really cute version of HELLO...LE LE LO. He says baba for the sheep. voo for the

cow...and ah ah for da da. He can say MOM but never for me...uses it when he

wants something it seems. He just started saying POP POP for my dad in a real

whisper. He gets speech therapy 2x a week which just started this month. It

was 1x per week since August...no speech before he turned 2(which I know was a

mistake) They tried to tell me he didn't need it. Live and learn....I am

still fighting for more. They say he has a motor planning problem. We are

working

on sounds...C U P which he can do individually each sound but not as a word

yet. It is so hard He tries so hard LOL ... I'm sorry if I am babbling but I

feel exactly the same frustrations as you. It is hopeful to know that they

will talk...The other emails you received prove that... Lets hope sooner than

later. Where do you live? When did Emerson start speech therapy? Regarding

the diaper situation, I have not even started with . My older son was

trained at 2 1/2 and fully night and day by 3. is not quite 2 1/2 yet

but has shown interest in the toilet from seeing his brother. I put out a

potty for him just in case but really do no push at all yet. I have an 8 month

old son too so I'm changing diapers galore...seems endless...what can you do?

Good Luck with all Keep me updated Ross

[Guest guest]

Hello Donna....What 3 words can he say? My is trying so hard... I'd

love to hear more...Does Adam get any speech therapy? or any therapy at all?

LOL

Ross Mom to 6, 2 MDS and Kirk 8mos.

[Guest guest]

I think your Dorothy is doing great. Our Adam is 17 months and he can say 3

words. As a matter of fact, our Skylar is 16 months and can say about 8

words and she is a typical child.

Donna - gram to Adam 17 months (mds) and Skylar 16 months

-- Re: when did your child become able to talk with you

Our Dorothy is 18 months with MDS and is talking in small 2 - 3 word

sentences. She can say about 30 - 40 words. Most you can understand. She can

ask for

her bottle, she says cup, this is easier to pronounce for her. She can say

up,

down, nite nite for bedtime. Did your children start out this way or was the

speech always an issue from beginning.

Alice Poholsky

cell

[Guest guest]

Hi - This is kind of silly, but he can say ... Hi...Thank you...Out...

Oh, I forgot , he can say meow also. We have a cat. lol He says out

because I have been singing the itsy bitsy spider to him since he was about

6 months old. One day he was sitting there doing all of the motions I had

been doing all by himself and singing. When he came to the part about - Out

comes the sun - he put his little arms up over his head and said out. Hi

comes out crystal clear and thank you is more like cank ou, but his says it

whenever we give him something so I think he knows what it means. So far

Adam has not had speech therapy only because we are on a waiting list. He

has been having some problems eating - which is getting much better - but we

will get him speech therapy as soon as we can. He also has OT and PT once a

week for each. I am lucky that his OT is a dear friend of mine and she

adores Adam which makes it nice. How about your son? What kind of therapy

does he have? Is he talking at all yet? Our babies are only 6 weeks apart

and spend almost everyday together, (Adam's mom does the child care and

Skylar's mom goes to work outside the home), so the doctor says they are

behaving like twins. They seem to have developing their own language and

jabber back and forth to each other all the time. Skylar has been a little

slow to talk also because of this. It is very cute to watch. Sorry for

going on so much. Once you get a grandmother started, she doesn't know when

to quit. Please tell me about , since our little guys are close in age

I would love to hear more about how he is doing. Donna - Adam's gram

-- Re: when did your child become able to talk with you

Hello Donna....What 3 words can he say? My is trying so hard... I'd

love to hear more...Does Adam get any speech therapy? or any therapy at all?

LOL

Ross Mom to 6, 2 MDS and Kirk 8mos.

[Guest guest]

Alice...

others may have answered about the diapers already...we used the pullups. My

son is 10 and has a bowel disease, so he's still in them, we upgraded to the

Goodnights, which go up to like over 100lbs!! He'll be in them a long time.

Angel

Mom to 10 MDS/Hirschsprung's Disease

Lance 15, Tyler 11, 8

Jaeda 7 and Shayne 1

[Guest guest]

,

I never had a trouble with Tim being silent. Even when he didn't speak well, he

was always babbling.

Certainly, not to alarm you, but, I would ask the therapists to evaluate him

further. Just to make sure that there isn't another underlying issue. Some

children with mds and ds experience autism. Children with Austism sometimes do

not speak.

It could be that he is just shy, or doesn't have much to say! My youngest son,

Garrett, hardly spoke at all until he was 3. And he has no developmental delays.

Even with my speech therapy background, I still couldn't get him to talk. Now,

Garrett is 7, and never quits talking! lol

As for the potty training, I highly recommend the book, " Potty Training in Less

than a Day "

This method was first designed for the mentally handicap. Later, they used the

same method (just a little simpler) for the developmentally abled. I used this

method with Tim and Garrett, and they were both trained very easily. Once you

begin training, I do not recommend using pull ups. I used them with Garrett for

a while and we were always having accidents. Once I quit using pull ups, he

never had another accident. They just feel too much like diapers for the kids to

care.

Hope all this helps,

Kristy

lisa wrote:

hi I know speech is a big issue with ds and mds.can any of you with older

chidren tell me,does your child with msd talk to you now.Emerson is getting

older no.he is three and still in diapers and will be four in june.i just want

to hear my on talk to me.He is pretty silent.he goes to speech therapy at school

3 times a week.he is a onderful little boy and manages to crack jokes like

pretending to take bites of sisters baby food and he lauhs so hard.also seems to

be gifted in music.i just need to hear from you guys when your child with mds

talked to you and when you got ri of the wretched diapers.m tries very hard to

pee on the potty sometimes.

[Guest guest]

Alice,

Dorothy is doing very well to be speaking in 2-3 word sentences at the age of 18

months! Tim did not use 2-3 word sentences until he was over 3 yrs old. And, at

18 months, he only had a vocabulary of about 10 words that only I could

understand.

Tim had speech therapy until he was in 3rd grade. Then his speech declined a

little due to the stop in therapy. Now, his speech is as normal as any one

elses. He does sometimes forget to put his tounge in when he is pronouncing a

word, and sometimes slurs his words, but that is just laziness on his part.

After all, he is a 17 yr old boy, and most boys his age dont want to make an

effort at anything! lol

Kristy

apoholsky@... wrote:

Our Dorothy is 18 months with MDS and is talking in small 2 - 3 word

sentences. She can say about 30 - 40 words. Most you can understand. She can ask

for

her bottle, she says cup, this is easier to pronounce for her. She can say up,

down, nite nite for bedtime. Did your children start out this way or was the

speech always an issue from beginning.

Alice Poholsky

cell

[Guest guest]

,

Luke never talked until he was about 5 years of age. At 4 years he had

a vocabulary of a one year old child. He did not qualify for speech

because his all around assesment was too high. He was in the Early

Childhood program for Special Needs from the time he was 2 years of age.

When the " light came on " he started to talk complete sentence and has

not been for lack of words since then. Sometimes I wonder WHY did I

worry about his speech so much in his early years.

As a paraeducator in the Early Childhood Class for Special Needs I have

worked with many children who have not been able to talk those early

years but eventually the speech comes. The other day I almost caught

myself saying something to a child that was talking very loud and non

stop BUT I did a second thought and remember How GREAT! this was a

child a couple years ago we wonder if he was ever going to find anywords

from within. A cause to celebrate!!! Yes, we all want to hear our

precious ones talking.

Luke was potty trained completely by the time he was 2 years of age. I

didn't do anyting just that he was ready for it. He trained during the

early summer months when he never had a lot of heavy clothes to deal

with. At school we have alot of our children who start in diapers but

after a couple weeks of training ourselves to remind the child to try

to go to the bathroom, they are pretty well trained. We give the

children stickers at first and really cheer them on when they first go

to the bathroom. Our reward is a big smile from them and getting them

to use some more words. Because after the first couple days, the

children have to ask for the stickers. We give them stickers for a

couple weeks and only when they ask for them. Our parents are so

excited when when their children master this stage.

Carol momx5 mom to Luke mds age 21 years of age.

[Guest guest]

Tina was in infant diapers until she was six.

[Guest guest]

Dear Alice,

I am sorry, but I do not know where you are from. I am from Western

Pennsylvania and I just got through some paper work initiated by Jonas' Early

Intervention case worker that has enabled us to receive all the diapers that

Jonas needs free of cost to us through a program that we have in our state. It

benefits any child who is over the age of 3 and still needs diapers due to a

disability. The paper work was a bit of a hassle, but not that bad, and now

they are being delivered to our door. If we needed even adult sized diapers I

think we could get them through this program. I wonder where you are and if a

similar program is in existence in your area? I would not have known this

existed here if not for my son's case worker mentioning it one day in passing.

Since Bob is out of work at this time, the free diapers are a blessing to us,

and having them delivered to our door each month is pretty nice too.

Blessings,

Barb Martz

Mom to Jonas (MDS) 3 & 8

Re: when did your child become able to talk with you

This may be a really silly question, but got to ask! My daughter is 18 months

and is in size 6 diapers. What did you all do when your child wasn't potty

trained until 3 or 4? Where do you get diapers to fit?

Alice Poholsky

cell

[Guest guest]

Barb...that's wonderful!!

I used to get a service like that...because also has a bowel disease,

and has no sensation of when he has to go. Here in California it's called the

" Regional Center " . I'm fed up with them though. They cut me off of EVERY

service. Said we couldn't get pull ups anymore, because " its a medical

condition..so your medical insurance should cover it " NOT!! So now I pay pay

pay

for pull ups (goodnights). This service also is supposed to provide respite

for parents of disabled children... either programs for the kids, or say,

they'll reimburse if you have to pay a babysitter so you can go shopping or

whatnot... I was told, without reason, that I didn't qualify for respite. Not

even a measly 4 hours a month!

They're coming for their annual IPP (like an IEP) in 2 weeks, and I'm ready

to tell them that they're wasting my time AND theirs, and not come back.

What's the name of the program in PA???

Angel

Mom to 10 MDS/Hirschsprung's Disease

Lance 15, Tyler 11, 8

Jaeda 7 and Shayne 1