Re: Newbie here!

[Guest guest]

Hi Welcome !!!!!!!

I cheated and did it right away. When I got the

tapes, I couldn't wait to get into the tapes. The

night I received the tapes, I did the Instructional

and then got up the next day and started the Basic.

But do it until you're comfortable with the moves and

feel that you're doing them right. There's no set

time-line.

I usually do the jab with the pivot. I know, he does

things differently some times.

I guess my motivation is all the fun I have and the

variety that all the tapes bring. I've been doing it

consistantly for almost 2 years now and have no

intentions of stopping.

Sandie, Tae and Bo who needs to add to her 1 year

story a 2 year story !!!!!!

--- mascaramon@... wrote:

> Hi I'm a newbie and I have a few questions for all

> you vetran Tae-Boers. My

> first question I ask of you is, how long did it take

> you to go from

> instructional to basic?? Also, I have problems with

> the jab. How exactly is

> it done? Because sometimes does it straight

> out from the shoulder

> (minus the full extension), and sometimes, he pivots

> to the side. Which is

> right? Also, how do you stay motivated? Thanks!

>

__________________________________________________

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[Guest guest]

Hi! My name is Dianna and I have a six year old son , who also has PMG. We

too live in Ohio.

also has drooling problems, and needs alot of help, but does understand

alot.

He is in a special needs class, but gets to be with his typical developing peers

for 40% of the school day

Good Luck

Dianna and

---- wrote:

> Hello my name is and we live in Ohio. I have been marreid for

> over 14 years to the best guy ever! We have four wonderful childern,

> the older three are our bio. childern, our youngest is adopted from

> Kazakhstan and has been home for abour 1 1/2 years. He is now 6 years

> old.

>

> After bringing him home and doing about a billion tests we foudn out

> that he has some significate brian damage. He has a partial absence of

> septum pellucidum, abnormal cerebellum on right side, and

> polymicrogyria. We seem to not be able to get many answers to what to

> expect or what we can do for him or our family in general.

>

> He is high functioning. He is labled special needs and has an IEP for

> school, but in an inclusive classroom. He has problems with his mouth

> and throat, drooling, lack of speaking ablility. He can nderstand what

> is said to him, but has the lack to relay things back.

>

> I am looking for some help, encouragment or what ever you all can share-

> Thanks

>

[Guest guest]

Hi ,

WELCOME! It is nice to see so many new faces on the list!

First, I wanted to tell you that we also have a daughter that was

born in Kazakhstan! She is not our child who has PMG, but I still

thought that was a cool connection! Which city was your son born

in? Our daughter was born in Aqtobe, and she is now 7.

Do you know which type of PMG your son has? It sounds like Bilateral

Perisylvian from your description of the oral motor/speech issues.

Has Dr. Dobyns or the Walsh Lab reviewed his MRI films? If not, I

would first recommend that you have them look at your son's test

results as they are the two groups who study neuronal migration

disorders in the states.

The biggest advice I can give is just from our experience with ,

who is 6 and has BPP. Giving your child a " voice " is critical.

could also understand what was being said to him, but had no way to

express himself other than vowel approximations, some sign language

and gesturing. We started him out with a GoTalk when he was 2, but

he didn't find it interesting at all as it didn't give him an

opportunity to express what he wanted to say as the choices were

limited. We moved to a Dynavox MT4 when he was 3 years old and he

quickly mastered page set after page set. It was amazing to see how

much he actually knew and just wasn't able to show us.

Now he is 6 and uses the Dynavox V. (you can check it out at

www.dynavoxtech.com)

I think therapies are important and have a place for our children,

however I have learned that it is even more important to allow

to just be a 6 year old and do things that other 6 year olds like to

do without being consumed with the things he " can't " do.

For us, we felt it critical that remain with his typical peers

at school. So we didn't put into a special program, he is

mainstreamed and gets resource services for Language Arts and Math.

He has made great friends at school and they really embrace him! It

is great to see the other kids light up when they see , and he

just loves playing with them as well. I think that being around his

classmates has motivated him to get better at using his communication

device and he learns so much from interacting with them.

Again, welcome to the list!

Best,

Krista

[Guest guest]

Krista, Thank you for all your info that you shared.  First off our son is from

the KO, Kizil Orda region.  It is on the southern end of Kaz.  I believe that

Aqtobe is on the more northern end,is that correct?  But anyway what a great

small world.

 

No I have not heard of Dr. Dobyns.  We have just had him looked at locally here

in Ohio.  They never did give me the specific diagnoses, but with my reading I

am leaning to the  Bilateral one myself.  He has actually three areas of his

brain that is damaged so they all seem to go or at least hold some of the same

issues.  His mouth is the biggest, and throat.  He doesn't speak, and never did,

but thanks to therapists and siblings he is coming along.  But his mouth is

ALWAYS open!  Trying to get him not to drink the water in the pool is it's own

issue.

 

He does have a voice bx thing at school, I am drawing a blank on the name of it,

but he loves it but can not bring it home.  We have looked into getting him one,

but we don't have the money that it needed to purchase one.  So we are really

trying to encourage the talking.  And yes he is treated very much like a normal

6 year old, t-ball, swimming and running around.  he was also in our Churches

childern's choir, our director was so encouraging to him.  He does LOVE music

that is for sure!

 

Many blessing to you-

 Love, The Nordman home team  growing by leaps and bounds!!!!!

Hi ,

WELCOME! It is nice to see so many new faces on the list!

First, I wanted to tell you that we also have a daughter that was

born in Kazakhstan! She is not our child who has PMG, but I still

thought that was a cool connection! Which city was your son born

in? Our daughter was born in Aqtobe, and she is now 7.

Do you know which type of PMG your son has? It sounds like Bilateral

Perisylvian from your description of the oral motor/speech issues.

Has Dr. Dobyns or the Walsh Lab reviewed his MRI films? If not, I

would first recommend that you have them look at your son's test

results as they are the two groups who study neuronal migration

disorders in the states.

The biggest advice I can give is just from our experience with ,

who is 6 and has BPP. Giving your child a " voice " is critical.

could also understand what was being said to him, but had no way to

express himself other than vowel approximations, some sign language

and gesturing. We started him out with a GoTalk when he was 2, but

he didn't find it interesting at all as it didn't give him an

opportunity to express what he wanted to say as the choices were

limited. We moved to a Dynavox MT4 when he was 3 years old and he

quickly mastered page set after page set. It was amazing to see how

much he actually knew and just wasn't able to show us.

Now he is 6 and uses the Dynavox V. (you can check it out at

www.dynavoxtech. com)

I think therapies are important and have a place for our children,

however I have learned that it is even more important to allow

to just be a 6 year old and do things that other 6 year olds like to

do without being consumed with the things he " can't " do.

For us, we felt it critical that remain with his typical peers

at school. So we didn't put into a special program, he is

mainstreamed and gets resource services for Language Arts and Math.

He has made great friends at school and they really embrace him! It

is great to see the other kids light up when they see , and he

just loves playing with them as well. I think that being around his

classmates has motivated him to get better at using his communication

device and he learns so much from interacting with them.

Again, welcome to the list!

Best,

Krista

[Guest guest]

Hi and Dianna,

We am from Ohio too. We live in Columbus. Are either of you

anywhere close? We'd love the opportunity to meet another family

familiar with PMG.

We too would be interested in a PMG convention. I am always

searching for information and ideas to give (2-1/2) better

opportunities for progress. He has some great therapists but as you

probably know, many are unfamiliar with PMG. However, they work

hard for him and he is starting to show some great progress.

Thanks to everyone on this message board for sharing their insight.

We have learned so much in the last 22 months.

Thanks,

Annette

> > Hello my name is and we live in Ohio. I have been

marreid for

> > over 14 years to the best guy ever! We have four wonderful

childern,

> > the older three are our bio. childern, our youngest is adopted

from

> > Kazakhstan and has been home for abour 1 1/2 years. He is now 6

years

> > old.

> >

> > After bringing him home and doing about a billion tests we foudn

out

> > that he has some significate brian damage. He has a partial

absence of

> > septum pellucidum, abnormal cerebellum on right side, and

> > polymicrogyria. We seem to not be able to get many answers to

what to

> > expect or what we can do for him or our family in general.

> >

> > He is high functioning. He is labled special needs and has an

IEP for

> > school, but in an inclusive classroom. He has problems with his

mouth

> > and throat, drooling, lack of speaking ablility. He can

nderstand what

> > is said to him, but has the lack to relay things back.

> >

> > I am looking for some help, encouragment or what ever you all

can share-

> > Thanks

> >

>

[Guest guest]

Annette- We live in Medina, near Cleveland. We are just trying to

get more info on what we are facing. So this is our first step in

helping our son and our family.

> > > Hello my name is and we live in Ohio. I have been

> marreid for

> > > over 14 years to the best guy ever! We have four wonderful

> childern,

> > > the older three are our bio. childern, our youngest is adopted

> from

> > > Kazakhstan and has been home for abour 1 1/2 years. He is now

6

> years

> > > old.

> > >

> > > After bringing him home and doing about a billion tests we

foudn

> out

> > > that he has some significate brian damage. He has a partial

> absence of

> > > septum pellucidum, abnormal cerebellum on right side, and

> > > polymicrogyria. We seem to not be able to get many answers to

> what to

> > > expect or what we can do for him or our family in general.

> > >

> > > He is high functioning. He is labled special needs and has an

> IEP for

> > > school, but in an inclusive classroom. He has problems with

his

> mouth

> > > and throat, drooling, lack of speaking ablility. He can

> nderstand what

> > > is said to him, but has the lack to relay things back.

> > >

> > > I am looking for some help, encouragment or what ever you all

> can share-

> > > Thanks

> > >

> >

>

[Guest guest]

You are correct, , Aqtobe is in the northern part of the

country, near Orenberg, Russia. It is sure a small world!

You can actually send Ruslan's MRI films to Dr.Dobyns or the Walsh

Lab at Harvard and they will review them for free and tell you

exactly what type of PMG Ruslan has. If you need the contact info.,

let us know.

I hear you about the closing the mouth in the pool situation!!!

has the EXACT same issue which results in LOTS of runs to the

bathroom because the pool water upsets his stomach. It makes going

to the pool very UNrelaxing! We are giving him extra probiotics to

build back up the good bacteria since the chlorine from the pool

water is killing it all. Wish there was a way to solve this problem

as he loves to swim (and so do his brother and sister) but it is a

constant battle to keep him from having an accident in the water.

Why won't the school let him bring his speech generating device

home? You can usually get permission by explaining that the device

is needed as Ruslan's " voice " and that in order for him to become

proficient at communicating so that he is able to access the

curriculum at school the same way as his nondisabled peers, he needs

to be uing the device in all areas of his day. He can't be expected

to know how to use the device proficiently if he is only exposed to

it at school as it is like learning a new language....does that make

sense? Also, you can always check into whether your insurance company

covers Speech Generating Devices under Durable Medical Equipment. We

have Aetna, our policy covered 's Dynavox V 100%, so we turned

back in the device we were using from our school district and got one

that would be ours no matter what happened (ie: if we moved, etc.)

Love hearing the stories about choir and how he is included in the

community! So cool!

Anyways, it is nice meeting another family who has also had the once

in a lifetime Kaz experience! Have a great weekend!

Krista

>

[Guest guest]

Krista

An idea for you on the pool water. In swim class they tell the kids

to hum when us parents put them under water, at our own discretion.

It works for Ethan about 60% of the time, as he likes to do " bobs "

and I won't put him under unless he hums!

>

> You are correct, , Aqtobe is in the northern part of the

> country, near Orenberg, Russia. It is sure a small world!

>

> You can actually send Ruslan's MRI films to Dr.Dobyns or the Walsh

> Lab at Harvard and they will review them for free and tell you

> exactly what type of PMG Ruslan has. If you need the contact info.,

> let us know.

>

> I hear you about the closing the mouth in the pool situation!!!

> has the EXACT same issue which results in LOTS of runs to the

> bathroom because the pool water upsets his stomach. It makes going

> to the pool very UNrelaxing! We are giving him extra probiotics to

> build back up the good bacteria since the chlorine from the pool

> water is killing it all. Wish there was a way to solve this

problem

> as he loves to swim (and so do his brother and sister) but it is a

> constant battle to keep him from having an accident in the water.

>

> Why won't the school let him bring his speech generating device

> home? You can usually get permission by explaining that the device

> is needed as Ruslan's " voice " and that in order for him to become

> proficient at communicating so that he is able to access the

> curriculum at school the same way as his nondisabled peers, he

needs

> to be uing the device in all areas of his day. He can't be

expected

> to know how to use the device proficiently if he is only exposed to

> it at school as it is like learning a new language....does that

make

> sense? Also, you can always check into whether your insurance

company

> covers Speech Generating Devices under Durable Medical Equipment.

We

> have Aetna, our policy covered 's Dynavox V 100%, so we turned

> back in the device we were using from our school district and got

one

> that would be ours no matter what happened (ie: if we moved, etc.)

>

> Love hearing the stories about choir and how he is included in the

> community! So cool!

>

> Anyways, it is nice meeting another family who has also had the

once

> in a lifetime Kaz experience! Have a great weekend!

>

> Krista

>

>

> >

>

[Guest guest]

,

LOVE this idea!!! Thanks so much for sharing. Will try it at the

pool with tomorrow!

Have a great weekend~

Krista

>

> Krista

>

> An idea for you on the pool water. In swim class they tell the

kids

> to hum when us parents put them under water, at our own

discretion.

> It works for Ethan about 60% of the time, as he likes to do " bobs "

> and I won't put him under unless he hums!

>

>

>