Atlanta area parents - and Stacey

[Guest guest]

and Stacey,

Nice to meet some other Atlanta area people! I live in NE Atlanta area

(Gwinnett/Barrow border). I have a 5 yr old son and a 3 yr old daughter. She

has severe apraxia, hypotonia, DSI, and asthma. Currently seems to be gaining

lots of ground though still not really speaking. Fiannly out of PT. Still

doing OT 1x a week and speech 3x a week. This snow has been WONDERFUL for her.

She was so excited (her first snow) that she has learned to say " snow " and we

made a snowman yesterday which she called " ohh-ma " . We were so proud of her.

The snow is also a great new sensory texture to explore.

She began attending preschool this year at Hebron Baptist Church and one of her

teachers knows sign language so she can let them know when she has to use the

restroom, etc. I think being around all the other children her age has helped

her also as this summer her evalution had labled her as non-social among other

things and now she seems much more outgoing.

As far as motor planning, she has had some problems with that but most of hers

is speech. I think her motor planning problems have more to due with her size

as she is only 21 pounds and pretty small. Most of her communication is

guestures, sign language, and just recently started adding sounds that alot of

the time I can understand (unitelligable speech/garble to others)

Hannah

[Guest guest]

H!- Good to know some other southerners here. did not know what

to think about the snow at all. He wanted to look real bad but when he got up

close to it, he ran away. I went outside and played in it while he stood at the

window and watched me. I kept throwing snow balls at him on the window which he

thought was sorta funny. Too bad he was so sick this week. I could'nt reaaly

let him out in it with the ear infections and the croup.

Stacey

[ ] Atlanta area parents - and Stacey

and Stacey,

Nice to meet some other Atlanta area people! I live in NE Atlanta area

(Gwinnett/Barrow border). I have a 5 yr old son and a 3 yr old daughter. She

has severe apraxia, hypotonia, DSI, and asthma. Currently seems to be gaining

lots of ground though still not really speaking. Fiannly out of PT. Still

doing OT 1x a week and speech 3x a week. This snow has been WONDERFUL for her.

She was so excited (her first snow) that she has learned to say " snow " and we

made a snowman yesterday which she called " ohh-ma " . We were so proud of her.

The snow is also a great new sensory texture to explore.

She began attending preschool this year at Hebron Baptist Church and one of

her teachers knows sign language so she can let them know when she has to use

the restroom, etc. I think being around all the other children her age has

helped her also as this summer her evalution had labled her as non-social among

other things and now she seems much more outgoing.

As far as motor planning, she has had some problems with that but most of hers

is speech. I think her motor planning problems have more to due with her size

as she is only 21 pounds and pretty small. Most of her communication is

guestures, sign language, and just recently started adding sounds that alot of

the time I can understand (unitelligable speech/garble to others)

Hannah

[Guest guest]

Hannah, it really is good to meet some other Atlantans.

I really have not introduced myself to this group yet - just been lurking for a

while. My son is 12 and is in the 6th grade at Creek Theme School. We

have always worked with an ADHD diagnosis but have never been at what I would

call a " good " place until several years ago. Lots of meds, lots of therapy,

lots of behavior modification, you know the drill. In Sept. 2001, I asked that

the school to refer him to the Marcus Center for a complete neuropsych. because

we just didn't seem to have a good handle on what was going on. He was diagnosed

with ADHD and had developmental dyspraxia added. We've just recently gotten the

Learning Disability eligibility - before that, we've always had EBD because the

school has always chosen to focus on his behavior rather than what really was

going on. We've got a neurology appt. coming up soon and I've just recently

gotten the school to pay for some extensive outside testing, including a full

battery of behavioral optometry testing and possible vision therapy. I really

feel like we're finally on the road to a better place even though there are many

bad habits developed over the years ( including in my parenting ) which we're

working so hard on. I am married and have two other children - a 23 year old son

and a 27 year old daughter who is a Trisomy 13, severely mentally retarded and

lives in a group home in Tucker.

I manage a support group for parents of brain-disordered kids. We have parents

from all over the State and we meet once a month in person. We have a website

and a listserv for posring much like this one. I have been talking with a gal I

met in Kennesaw about a support group for apraxia on this side of town. There is

one in Fayetteville but that is so far for folks from this side.

Well, I guess that's my intro taken care of. I look forward to getting to know

everyone, Bowen

[Guest guest]

Hi and Welcome!

Speaking of " lots of therapy " I just took my two boys to their

pediatrician yesterday and wanted to run something by you and

everyone else to see if you've heard of this- on your list, etc. I

take my children to a " special needs " pediatric group that is through

the Children's Specialized Hospital, and I love this group. One of

the Doctors is a pediatrician who has a background as a child

neurologist, and the other used to be a pediatrician with a

background as a neonatologist. The pediatrician with a background as

a neonatologist just left and was replaced by a new

pediatrician who has a background in Genetics from Beth Israel

Hospital.

With both children he looked at them in a way no other doctor ever

has-and my two have been to quite a few neurologists, etc. With

Tanner, he asked to see a picture of my husband, really looked at

Tanner's features, the way he walked, etc. and asked all kinds of

questions about what types of tests we've had for him. To make a

long story short, he's written a prescription for me to take Tanner

to get an X Ray of his wrist, and he wants me to take Tanner early in

the week (not towards the weekend like when I was there so blood work

doesn't get lost) to test to see if there are any genetic reasons for

Tanner's apraxia. Tanner is so off the charts tall at this point

that it's unreal. He is taller than some of Dakota's friends who are

eight years old, and is the average height of most of the seven and

eight year olds in Dakota's class. Dakota's tall too, but not

unusually tall like Tanner. Don't get me wrong, Tanner looks good

and walks fine-he's just a really big kid and nobody thinks he's only

5 and a half when they see him.

Of course I told their new doctor about the fish oil / ProEFA and

gave him the http://www.apraxia.cc website. I told him Tanner's been

taking fish oil for 2 years now and I don't know if it makes kids

taller and laughed. I believe Tanner was a puzzle to him that he

wanted to try to figure out if he could. Tanner doesn't quite seem

to fit into any one box quite right, but since he does have the

hypotonia and SI issues on top of the apraxia-this new doctor felt

that he " could " have a genetic reason, and wanted to rule that out.

Well I was happy with this new pediatrician in that he's looking to

see if there is an answer. He explained apraxia the way many do at

first as more of a name than a diagnosis-so he's looking for what's

causing it in Tanner. You know I'll let all of you know if and what

he finds. I'm sure many of you went through the genetic testing.

But did any of you ever have the wrist XRay done of your child's

wrist? The reason for that (you are probably thinking " what did he

hurt his wrist? " nope!) We know our child's biological age-but by

looking at a simple X Ray of the wrist some doctors can tell how the

bones are growing and aging and how old the bones think they are.

Maybe ask your doctors about that.

I know that 's son Khalid who is now 15 is something like 6 foot

4 inches or something. and I talk almost every day and she

said that Tanner reminds her of Khalid in his speech development and

size, etc. One main difference however is that Khalid's apraxia

affects his limbs as well. , you may want to speak to too

because of this since your child has the limb apraxia more than the

speech aspect. Also, check out http://www.drstordy.com Her

book 'The LCP Solution' was actually studies on dyspraxia (limb

apraxia) dyslexia, and ADHD-so both of your child's diagnosis's are

covered in her book! You may also want to look at the work done by

Dr. from Oxford. Her research work has a similar

focus to Dr. Stordy.

I know you are from the same state as Liz ! I'm looking

forward to meeting Liz and her daughter Haley on Thursday for the TV

taping. That's how and I became such great friends, when we

met for the Inside Edition apraxia segment ( is from New Mexico)

Oh, and one other thing, when you post a message-please feel free to

post your website and list serve address underneath. Many people may

not read every message and this way they can find you! (and that

goes for anyone who has a relevant website that can help)

=====

[Guest guest]

Hi ,

Who did you see at the Marcus Institute? We are seeing Dr. Pakula this month

and have heard that she is fantastic as a

developmental pediatrician. We have been waiting since Sept for this appt. (

Please don't let it snow again0 LOL)

We are in ville. It's like Siberia over here as far as resources go. I

am planning on attending the support group meeting in

Fayetteville next week. It's on Jan 10th. Everything is far for us, so it

really does'nt matter which way I go to find people.

Where is Creek Theme School? I am looking around for another school for

. His private preschool is just not

going to meet his special needs like I had hoped. They just let him do whatever

he wants and do not make him participate at all. I

feel like I am paying for a babysitter.

Stacey

mom to

living in Siberia (LOL)

>Hannah, it really is good to meet some other Atlantans.

>I really have not introduced myself to this group yet - just been lurking for a

while. My son is 12 and is in the 6th grade at

>Creek Theme School. We have always worked with an ADHD diagnosis but have never

been at what I would call a " good "

>place until several years ago. Lots of meds, lots of therapy, lots of behavior

modification, you know the drill. In Sept. 2001, I asked

>that the school to refer him to the Marcus Center for a complete neuropsych.

because we just didn't seem to have a good handle

>on what was going on. He was diagnosed with ADHD and had developmental

dyspraxia added. We've just recently gotten the

>Learning Disability eligibility - before that, we've always had EBD because the

school has always chosen to focus on his behavior

>rather than what really was going on.

[Guest guest]

Hannah-

You must be minutes from me, I am very familiar with Hebron Baptist,

as I looked into a program a couple of years ago. I am actually on

the border of Gwinnett and Barrow also. Actually great, to find

someone so close to me. My daughter is 4-1/2, has verbal apraxia, is

also learning sign language. I would love to talk with you more, and

invite you to check out my site. Please feel free to email me:

Lizardo27@..., and I look forward to hearing from you soon!!

The snow was a great way to interact, as school has been out for so

long, it gave us a chance to do different stuff. Yesterday morning,

that was the first word I heard..I was laying in bed, and heard her

little voice scream out " DOW " !!! I just smiled. Anyways, would love

to chat with you more...

Liz

http://kidstalkback.tripod.com/kidstalkback/

--- In @y..., " Ron and Hannah " <rhbowyer@h...>

wrote:

> and Stacey,

> Nice to meet some other Atlanta area people! I live in NE Atlanta

area (Gwinnett/Barrow border). I have a 5 yr old son and a 3 yr old

daughter. She has severe apraxia, hypotonia, DSI, and asthma.

Currently seems to be gaining lots of ground though still not really

speaking. Fiannly out of PT. Still doing OT 1x a week and speech 3x

a week. This snow has been WONDERFUL for her. She was so excited

(her first snow) that she has learned to say " snow " and we made a

snowman yesterday which she called " ohh-ma " . We were so proud of

her. The snow is also a great new sensory texture to explore.

> She began attending preschool this year at Hebron Baptist Church

and one of her teachers knows sign language so she can let them know

when she has to use the restroom, etc. I think being around all the

other children her age has helped her also as this summer her

evalution had labled her as non-social among other things and now she

seems much more outgoing.

> As far as motor planning, she has had some problems with that but

most of hers is speech. I think her motor planning problems have

more to due with her size as she is only 21 pounds and pretty small.

Most of her communication is guestures, sign language, and just

recently started adding sounds that alot of the time I can understand

(unitelligable speech/garble to others)

> Hannah

>

>

>

[Guest guest]

Would love to talk more with both of you about the Marcus Institute,

I am going to be looking into getting my daughter an evaluation

there, and would love some insite, before I go through that process.

Also have either one of you heard of The School? It is in

Roswell, and they are supposed to be starting a pre-k and

kindergarten class for children with apraxia. I made a contact with a

SLP from The Atlanta Speech School that gave me that information. I

would love to find out more, and share that information with all of

you, when I get it. As for now I am planning my trip to New York to

film the show with

[Guest guest]

Dear ,

I wonder about children being very large with Apraxia,

JAck is 2 1/2 and people always think he is like 3-4

yrs old. But my husband is tall so maybe for me there

is no connection. When I buy him clothes he wears a

boys small not even really in toddler clothes anymore

outgrowing his 4x.

A ? though, Jack has never been to a neurologist for

his Apraxia only his nerve injury from birth, the last

time I brought him to the neurologist was when he was

23 months and still not speaking, I asked the Dr. If

the nerve injury from birth had anything to do with

him not talking yet and explained to him that his

mouth seemed lazy low toned etc. I did not even hear

the term Apraxia until July but he told me he was just

late. Do you think I should take JAck to see a neruo?

It just seems that alot of you guys take your children

to see these Dr's. What do you think?

Sincerely,

Eileen

seanzonigal@...

---

[Guest guest]

Liz, our neuropsych. was done by a Dr. Sheila Balog in McDonough. I had

requested that she be the one to do it as I have heard from so many people that

she's just exceptional with children.

The way the program works is that , after the referral, is made - usually by the

school but not necessarily - the doctor on staff there will line your child up

with the appropriate evaluations that they feel are necessary based on the

information that you and other caregivers

( medical and family ) give. This range includes a wide variety of types of

doctors depending on the child's needs. It has been my experience that the

providers they use are all exceptional . In some cases, you can even make

certain requsts.

The evaluations are done primarily to assist the school in developing a plan for

the child that suits his individual needs. In this sense, it is not truly an

independent evaluation as one would be not associated with the schools at all.

Once the eval. was done, two people from the Marcus Center met with us at

's school ( not in an IEP ) to go over everything and make

recommendations. The psychiatrist I really like there is Dr. Stapel - so kind,

compassionate and patient. The pharmacology man is Doug Lee who also works with

the Emory Auism and Resource Center.

I was very pleased with the whole process. I would say the only thing I didn't

like was that we applied in May 2001 and it was Sept. before the evaluations

were complete - I am not a patient person. Overall, I hink it's a wonderful

program.

I have heard of the School. The central campus is in Atlanta on Ponce de

Leon. The types of disabilities listed in my book for them are : students in

regular school or in programs for children with learning disabilities and

differences. Gotta love that word - DIFFERENCES !!!

Their phone # is 404-377-7436, the contact name is Economy, her email addy

is JeanE@ howardchool.org. They offer year round school, of course, but they

have some wonderful summer only programs also which I understand are good but

costly.

Good luck in NY !!! , 42, Stargardt's disease with cone-related disorders-

www.smartgroups.com/groups/MAPBPKIDS

Children : ,12,, developmental dyspraxia, NVLD, ADHD, mood disorder not

specified

Kristian, 27, Trisomy 13, severe MR, lives in group home

Andy, 23, lives at home, no diagnosis

Husband , the most wonderful husband on the planet

[Guest guest]

, Creek is off of Ashford Dunwoody right inside 285. I am very happy

with the school , programs, and personnel. has really never had a good

school situation so this is the first. He has always hated school - in fact,

most of our biggest meltdowns have been over going to school. I am talking the

most manipulative kid on the planet about school. He's been in his pajamas,

dropped off at the curb, chauffered in a police car, taken 1 1/2 hours early by

my husband, gone in a cab, walked after hours of a meltdown, spent the day in

juvenile hall - you name it, we've done it. He still doesn't like school but

the meltdowns over it are less frequent now. As we are learning more about the

disabilties and accomodating them better, school is getting a little better.

Given the chance, he would stay home with me everyday, though - he's asked to be

homeschooled so many times.

Let me know how the meeting goes. , 42, Stargardt's disease with

cone-related disorders

Children : ,12, developmental dyspraxia, NVLD, ADHD, mood disorder not

specified

Kristian, 27, Trisomy 13, severe MR, lives in group home

Andy, 23, lives at home, no diagnosis

Husband , the most wonderful husband on the planet

www.smartgroups.com/groups/MAPBPKIDS