Re: New diagnosis of apraxia and I am scared to death

[Guest guest]

Hi, I have a angel with down syndrome also. It is not uncommon for children

with ds to have severe speech delays. Do not let this scare you! I am really

surprised they gave you a diagnosis of apraxia when some children with ds just

never are verbal. He sounds like he is doing great. I would just keep doing

what you are doing, and he will learn in his own time. There is a good book out

specifically for speech development in children with ds. You can get it at

Amazon.

Lorene

@...: reicherts6@...: Sat, 23

Feb 2008 15:30:00 +0000Subject: [ ] New diagnosis of apraxia

and I am scared to death

I have a 4.75 year old son with down syndrome who was newly diagnosed with

moderate to severe developement speech apraxia. I am at a lose. I do not know

where to state or what to do. The thought of my son not saying I love you or

calling me momma scares me to death. Noah seems to be very bright. His receptive

language is close to 100%. He receives SLP at hippotherapy once a week and in

home SLP once a week. He does not go to school because of his week immune

system. He has 3 other siblings, 8, 6, and 2 years of age. I homeschool the two

older ones. Can anyone help me? I need to know what I am up against. Is there

hope? What can I do for him? I love him so much. I want him to learn to read.

Will he be able to without speech? He can say U P and OU T with help. Mostly he

just says ba. I am so so so scared.

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[Guest guest]

Oh Kris my heart goes out to you! It doesn't seem that long ago that

I thought the same things. It was true anguish to think that I might

never hear " I love you " or that my son would not be able to do all

the things I had dreamed for him. Please don't be afraid. Please

know that no matter what your son WILL be wonderful.

Here is what advice I can offer: if you haven't already, get the book

The Late Talker: What to Do If Your Child Isn't Talking Yet by

Marilyn C. Agin, F. Geng, and Malcolm Nicholl . Inter library

loan or buy it, it's worth it! It gave me hope when I was desperate

and it talks about how much therapy and what kind of therapy is

helpful.

Then hang out here and read the messages that speak to you. There is

a division right now of people who use speech and OT therapies and

others who use a combination of therapies and fish oil and vit E with

their children and a group that are doing more in depth therapies

like diet restriction, DAN! (Defeat Autism Now) protocols and a

foundation called NACD (National Association for Child development)

and others. You will needs to find your way through this. There are

many here, well over 7,ooo members! Please ask what ever you need to

ask and there will be someone who responds.

I home school my only son who was diagnosed with apraxia so please

don't hesitate to contact me smccann@... or write here on

the list.

You will help your son and he will teach you about acceptance. It's

a roller coaster of a ride but know you are not alone and it really,

really will be okay.

McCann

Sharing the roller coaster ride with 6 year old Nick

>

> I have a 4.75 year old son with down syndrome who was newly

diagnosed

> with moderate to severe developement speech apraxia. I am at a

lose. I

> do not know where to state or what to do. The thought of my son not

> saying I love you or calling me momma scares me to death. Noah

seems to

> be very bright. His receptive language is close to 100%. He

receives

> SLP at hippotherapy once a week and in home SLP once a week. He

does

> not go to school because of his week immune system. He has 3 other

> siblings, 8, 6, and 2 years of age. I homeschool the two older

ones.

> Can anyone help me? I need to know what I am up against. Is there

hope?

> What can I do for him? I love him so much. I want him to learn to

read.

> Will he be able to without speech? He can say U P and OU T with

help.

> Mostly he just says ba. I am so so so scared.

>

[Guest guest]

,

Did he ever say I love you? We have made great strides here but my

son said Mommy on 5/10/07 and then we lost id. We lost daddy which we

had a lot back then and both are gone now despite all the new words.

I just need some hope that they will return.

Liz

> >

> > I have a 4.75 year old son with down syndrome who was newly

> diagnosed

> > with moderate to severe developement speech apraxia. I am at a

> lose. I

> > do not know where to state or what to do. The thought of my son

not

> > saying I love you or calling me momma scares me to death. Noah

> seems to

> > be very bright. His receptive language is close to 100%. He

> receives

> > SLP at hippotherapy once a week and in home SLP once a week. He

> does

> > not go to school because of his week immune system. He has 3

other

> > siblings, 8, 6, and 2 years of age. I homeschool the two older

> ones.

> > Can anyone help me? I need to know what I am up against. Is there

> hope?

> > What can I do for him? I love him so much. I want him to learn to

> read.

> > Will he be able to without speech? He can say U P and OU T with

> help.

> > Mostly he just says ba. I am so so so scared.

> >

>

[Guest guest]

Kris,

You hang in there. No one but you will know what the right thing to

do in the future for your son but it sure does sound like you are

doing plenty right now. You mentioned a weak immune system. A doctor

on this board found that two of her boys, one apraxic, had zinc

deficiencies and once she found out what to supplement they got sick

far less often.

Your love, your homeschooling and whatever you find in the future

will be more than enough. It is good to remember is that your son has

nothing new...just a new name for what was always there. There is so

much hope and I think in some ways there may even be more known about

speech issues as they are associated with Downs.

There is a beautiful story in The Read Aloud Handbook by Jim Trelease

about a little girl with Downs. Her parents did a nice read aloud

program with her and she is now in college and thriving. She started

out in the hospital as a baby undergoing heart surgery.

There is so much hope. You hang tough, share your story and feel

supported because you are. Your son will find his voice and the world

will see him as the bright and swett child he is and you know him to

be. So much hope! hang in there!

>

> I have a 4.75 year old son with down syndrome who was newly

diagnosed

> with moderate to severe developement speech apraxia. I am at a

lose. I

> do not know where to state or what to do. The thought of my son not

> saying I love you or calling me momma scares me to death. Noah

seems to

> be very bright. His receptive language is close to 100%. He

receives

> SLP at hippotherapy once a week and in home SLP once a week. He

does

> not go to school because of his week immune system. He has 3 other

> siblings, 8, 6, and 2 years of age. I homeschool the two older

ones.

> Can anyone help me? I need to know what I am up against. Is there

hope?

> What can I do for him? I love him so much. I want him to learn to

read.

> Will he be able to without speech? He can say U P and OU T with

help.

> Mostly he just says ba. I am so so so scared.

>

[Guest guest]

Do you know the name of the book that you are referring to? How old

is your angel?

I have had three different SLPs say that they thought he has apraxia.

One of them actually tested him a few months back.

>

> Hi, I have a angel with down syndrome also. It is not uncommon

for children with ds to have severe speech delays. Do not let this

scare you! I am really surprised they gave you a diagnosis of

apraxia when some children with ds just never are verbal. He sounds

like he is doing great. I would just keep doing what you are doing,

and he will learn in his own time. There is a good book out

specifically for speech development in children with ds. You can get

it at Amazon.

> Lorene

>

>

> @...: reicherts6@...: Sat, 23 Feb 2008

15:30:00 +0000Subject: [ ] New diagnosis of apraxia

and I am scared to death

>

>

>

>

> I have a 4.75 year old son with down syndrome who was newly

diagnosed with moderate to severe developement speech apraxia. I am

at a lose. I do not know where to state or what to do. The thought of

my son not saying I love you or calling me momma scares me to death.

Noah seems to be very bright. His receptive language is close to

100%. He receives SLP at hippotherapy once a week and in home SLP

once a week. He does not go to school because of his week immune

system. He has 3 other siblings, 8, 6, and 2 years of age. I

homeschool the two older ones. Can anyone help me? I need to know

what I am up against. Is there hope? What can I do for him? I love

him so much. I want him to learn to read. Will he be able to without

speech? He can say U P and OU T with help. Mostly he just says ba. I

am so so so scared.

>

>

>

>

>

>

> _________________________________________________________________

> Climb to the top of the charts! Play the word scramble challenge

with star power.

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>

>

[Guest guest]

Hi, My angel daughter will be three in March. Her receptive language is

definitely far above her expressive language. This is pretty much the norm for

children with ds. There are two books by the same author: Early Communication

Skills for Children with Down Syndrome (Libby Kumin,Ph.D.,CCC-SLP)

Classroom Language Skills for Children with

Down Syndrome (Libby Kumin,Ph.D.,CCC-SLP)

I home school my children (nine at home) ten in all. I do not have y in any

therapies at this time. I took her to Early Intervention for the first year and

she did not qualify. I then tried her in physical therapy at 12 months and all

she did was cry(she is VERY strong willed). I did not like the therapists

attitude towards her, so I pulled her out and worked with her at home. She

started crawling like a typical child soon after that and took her first steps

at 18 months. She can throw and catch a ball, is attempting to ride a tricycle.

She eats with a fork and spoon, colors (scribbles) and helps with small

household tasks. She says some single word very clearly, and has a few two word

and three word phrases. " Bye-Bye, daddy " " Hi MaMa "

" I did it! " Anyway, I realize that she is doing quite well and I know I would

be concerned if she didn't have any language. I just felt bad that you had to

have another diagnosis and was trying to encourage you. Maybe these books will

help confirm or clarify the apraxia diagnosis.

My neice, now 14, also has ds and she didn't start saying anything until she was

four or so. She now is quite a talker!! She also reads!! She was much more

delayed in all areas than y and now is doing just amazing! Just some

encouragement, I hope

Please feel free to email me privately if you want to talk.

Lorene

@...: reicherts6@...: Tue, 26

Feb 2008 02:57:50 +0000Subject: [ ] Re: New diagnosis of

apraxia and I am scared to death

Do you know the name of the book that you are referring to? How old is your

angel? I have had three different SLPs say that they thought he has apraxia. One

of them actually tested him a few months back. >> Hi,

I have a angel with down syndrome also. It is not uncommon for children with ds

to have severe speech delays. Do not let this scare you! I am really surprised

they gave you a diagnosis of apraxia when some children with ds just never are

verbal. He sounds like he is doing great. I would just keep doing what you are

doing, and he will learn in his own time. There is a good book out specifically

for speech development in children with ds. You can get it at Amazon. > Lorene>

> > @...: reicherts6@...: Sat, 23 Feb 2008 15:30:00

+0000Subject: [ ] New diagnosis of apraxia and I am scared to

death> > > > > I have a 4.75 year old son with down syndrome who was newly

diagnosed with moderate to severe developement speech apraxia. I am at a lose. I

do not know where to state or what to do. The thought of my son not saying I

love you or calling me momma scares me to death. Noah seems to be very bright.

His receptive language is close to 100%. He receives SLP at hippotherapy once a

week and in home SLP once a week. He does not go to school because of his week

immune system. He has 3 other siblings, 8, 6, and 2 years of age. I homeschool

the two older ones. Can anyone help me? I need to know what I am up against. Is

there hope? What can I do for him? I love him so much. I want him to learn to

read. Will he be able to without speech? He can say U P and OU T with help.

Mostly he just says ba. I am so so so scared. > > > > > > >

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