Success Stories

August 22, 2003

" As a new person to your list and new to the world of apraxia, I would love to

hear any success stories you have of your kids. "

My son is now 4 yrs 4 months. He was completely nonverbal at age 3 yrs 6

months ah, eh and du occasionally. He tested extremely low whenever he was

tested. I had started him on ProEFA at around age 3 years and saw changes in

his attention to tasks (especially in OT) but his speech was still non existent.

He used sign to communicate. Around 3.6 we started getting some approximations,

starting with cookie (cu cu) etc.... Now he was too many words for me to count

and is beginning to put 2 and 3 words together with the occasional 4 words

together. He is actually saying part of his alphabet, he can name some of the

days of the week, he knows his colors and shapes. He draws circles (very

messy) and lines with markers and glue. His official diagnosis Global Apraxia,

Hypotonia, DSI.

" What therapies helped most? "

Oral motor therapy (including a lot of loosening exercises, horns, peanut

butter on lips, popsicles, vibration to mouth and tongue, bite exercises, using

electric toothbrush), speech therapy including the above and alot of sound

repetition (whatever he could say we started from there- a lot of repetition at

home also), occupational therapy heavy with sensory diet input (swinging in

many different appartuses (sp), beans, rice, sand, play dough etc...) We have

braces for his hands ( to help with his loose ligaments) that we use some, we

have done a lot of brushing, etc...

" How much success have your kids had?

Has apraxia stopped your kids from being in regular preshcool/ schools? "

Our success has been tremendous in the last few months. He was in an enhanced

preschool class this past year and would be with the " typically " developing

children only 30% of the day. That was even overwhelming at times. He was very

standoffish at church etc... I didn't know if he would every interact well with

other children but I kept trying. This year he went into the same classroom as

last year but he has made so many improvements that we are now having a meeting

to get him placed in a blended classroom 10 " Typically " developing kids and 5

with IEPS. I plan to mainstream into K next year.

" Has apraxia stopped your kids from becoming involved in other age appropriate

activities and with making friends? "

He does have more trouble than my other son with the age appropriate

activities but we just keep trying and I feel that we will meet that goal along

with all the others. We have jumped many hurdles and I know we have many more

to go but he can do it.

Just wanted you to know to never give up hope and just keep pushing on. I

never would have believed we would be were we are right now but I just kept

hoping and he kept working.

God bless

Daphne

Mom to Spencer 6.6 yrs (ADHD, Epilepsy), Zach 4.4 yrs (Global Apraxia, DSI,

Hypotonia) and Noah 21 months age appropriate

August 23, 2003

> As a new person to your list and new to the world of apraxia, I

would love to

> hear any success stories you have of your kids.

> What therapies helped most?

Speech and occupational therapy done in a fun multisensory way. We

found both traditional therapies typically beneficial for apraxia

such as Easy Does it for Apraxia, Kaufman techniques (and kits),

touch cue including but not limited to PROMPT, and oral motor as

well as unconventional therapies such as cranial sacral therapy, and

the right formula of EFAs. (can't stress the EFAs enough!)

Also normal kid activities that I encourage you to explore are

swimming, karate, dance, gymboree or gymnastics, even team sports

etc. Motion seems to help stimulate speech. You may also want to

find activities your child can excel in that don't require extensive

verbal output such as painting or some other type of arts and crafts

class, musical instruments (even some you can make

http://www.preschooleducation.com/art31.shtml )computers, and for

almost all -game boy -Nintendo, game cube or some other playstation

type game station. Not only will help with hand eye coordination -

but will provide your child with a nonverbal way to " play " with

others. These games appear to be easier to learn how to play when

younger. As an adult you can learn -but the children just pick them

up so quickly.

> How much success have your kids had?

My son Tanner who has been diagnosed with verbal/oral

apraxia/sensory integration dysfunction and mild hypotonia knows

what he needs to do and has always worked hard at achieving goals.

He puts lots of pressure on himself - on the other hand isn't

discouraged when he fails -he'll just try again. For this reason -

his success rate is as high if not higher than even children who

don't have apraxia in some nonverbal ways.

> Has apraxia stopped your kids from being in regular preshcool/

schools?

With Tanner I always followed my gut. When preschool age and

essentially nonverbal I found Tanner shied away from other children -

would regress and go into a corner or off by himself when at

children's parties or at friends or neighbor's houses when many

other children were around. I sheltered Tanner at this age -and

always assured him that " everybody learns to talk " He did really

well with one on one play dates -and he thrived in an oral based

preschool for the hearing impaired (Summit Speech School in New

Providence, NJ) which was covered by our town's school system and

written into his IEP as " out of district placement "

Tanner did so well in this placement that he was able to be fully

mainstreamed in Kindergarten (with much advocating) with pull out

speech and occupational therapy. He was one of the top children in

his class according to his teacher. This year for first grade

Tanner has tested and been accepted in an accelerated

academics " college prep " school where he is right up to speed with

the children who were fluent readers and writers in kindergarten.

Tanner has now met all his OT goals -but he still is in pull out ST.

> Has apraxia stopped your kids from becoming involved in other age

appropriate

> activities and with making friends?

Tanner plays soccer -and also can do trapeze and circus,

skateboarding, roller blading, tubing off the boat, swimming etc.

He's not very sturdy and graceful with all his movements -like bike

riding, it's harder for him. But he does it. Tanner only had one

problem in teasing which lasted only for about a week until I went

in and did a circle of friends (and used Scooby Doo as a model of

a " cool dog everyone wants to hang with that doesn't talk " right "

all the time) Other than that one time however -even though

Tanner's speech is still not perfect, untypical for children with

speech impairments of his age -he has no problem making friends -and

we can't keep up with all his playdates that he's invited to.

Tanner was very severe at three -so there is hope for all children.

You can read Tanner's story in The LCP Solution book

http://www.drstordy.com/stories.html (under the " lellow

breakthrough " ) as well as on this page of the CHERAB website

http://www.cherab.org/information/familiesrelate/letter.html you can

hear him throughout the past few years at The Talking Page

http://www.debtsmart.com/talk/tanner.html (the first time he was

taped was after nine (!!) months of Efalex -and this was excellent

progress for him recorded by his therapists/doctors. He now is on ProEFA/ProEPA)

Also if you are

looking for stories -have you read The Late Talker? We interviewed

hundreds of families/professionals for this book which is for any

child that has a delay in speech whether it's apraxia or just a

simple delay.

http://www.speech-express.com/late.talker.html

Hope that helps!

=====

August 25, 2003

With the right therapy and therapist doing the therapy, there is definately

success stories. Mark is transitioning from ei to cpse. He has always been in

a regular day care environment as well as being bused to a special language

program. It's been overloading at times but the payoff is there. His cognitive

abilities have really excelled to basically age appropriate. Mark's best help

has been a combination of a speech therapiest who specializes in apraxia and his

EFA/DMG/carnasine supplementation. He started gymnastics in the spring and will

continue in the fall. He is very hapless but I want him to try, he has fun, no

fits. I'm also looking into swimming, he's had a lot of fun at friend's houses.

He does have friends who he recognizes. He still does a lot of parrell play but

does very well w/my older son who's six. He still seems to get much more

distracted and upset in big crowds(sensory issues). He has overall made some

remarkable gains in the past couple of years, he therapists say he is definately

a success story of ei.

Selena

[ ] Success Stories

As a new person to your list and new to the world of apraxia, I would love to

hear any success stories you have of your kids.

What therapies helped most?

How much success have your kids had?

Has apraxia stopped your kids from being in regular preshcool/ schools?

Has apraxia stopped your kids from becoming involved in other age appropriate

activities and with making friends?

Thanks

February 16, 2009

As mentioned on a previous post, it's always good to read about the

success of others on the protocol. I have three kids on the protocol,

one with ADHD, one with Asperger's and one with mild/moderate autism.

My son Noah is the one with mild/mod autism and he has a severe

expressive language delay. His receptive language, I believe and so do

others who work with him, is near typical. Unfortunately, " experts " at

the Southern CA Diagnostic Center disagree with us. They informed me

in Sept that Noah has made no progress developmentally since they

evaluated him in January of 07. We were also told that the

accommodations made in the classroom were not helping him and he was

basically just imitating his aide and not really engaged in learning.

This was after observing him for about an hour and not interacting

with him at all. When he was initially evaluated, I was told he

wouldn't learn to read using phonics and a whole word approach should

be used. We had been trying phonics with no success and he still

wasn't making any progress in reading (he's 8 and is in 2nd grade). He

knew all the letters and letter sounds but couldn't put them together

in words. He knew many sight words but couldn't recognize them in

sentences.

Well, I kind of like it when some experts are proven wrong. Over the

past month or so, phonics has clicked with Noah and he has become very

proficient in sound out words. Unfortunately, this didn't translate

into actually reading sentences in a book. Until Valentine's Day . . .

we came home from dinner and I sat down with him to read a story from

his reading book. He did very well, but that didn't surprise me

because I've read the story with him several times and he's read it at

school countless times. What did surprise me was this . . . I told him

I would read him a story from the book and I chose one near the end of

the book because it was about baseball. He loves baseball! Although I

was planning to read it to him, he ended up reading the entire story

to me, sounding out unfamiliar words. I didn't help at all! One year

(almost to the day) on the protocol, and my son read to me for the

first time. It was the best Valentine's Day ever!

The other awesome thing that happened was when we were at dinner. We

took the kids to Chili's and the kids' menu had a picture of a sick

baby and a write up about St. Jude's. Noah pointed to the picture of

the little toddler and said " Baby. Sick baby. " He picked up a crayon

and drew a baby bottle for the baby. Then while I was talking to my

other son, Noah continued to draw. I looked at the picture and asked

him what it was (I didn't have my glasses). He replied, " Toy car for

sick baby. "

All the best,

Robyn

February 16, 2009

Sooooo cool. So are you fantasizing about sending video of him doing this to

those experts who said he couldn't?

PS - Thanks for the chills. His concern about the sick baby ... so precious!

________________________________

From: Robyn <rngcoggs@...>

Sent: Monday, February 16, 2009 11:41:38 AM

Subject: Success Stories