Re: Re: questions? therapy and bathing

July 9, 2012

This post made me cry and happy all at once. I have been worried for so long

wondering what am I going to do when Emm goes to school. I quit working to be

home with her and although we have therapy of some kind three days a week it is

not enough. My other children and I do work with her on our own. She does walk

now. It does take a lot of love and dedication and yes our kids can do it!! I

have thrown around the idea that I will home school her. My cousin did this for

her son and he did great. I thought I was being overprotective but reading your

story makes me feel so much better! Thanks I needed that!!!

~Jodi Mom to emmalee 3

> Candace, my daughter Jaunene, is 18 years old with ILS/PMG. Parents are

mislead with the concept of Therapy. Everyone in the field knows 1 hr a week is

not enough to make any improvements/progress especially with our kiddos. The

Therapist basically is coming in for an hour TEACHING YOU and it is up to the

parents to follow through on a daily basis. It has always been this way starting

with Early Intervention, Numerous Therapist and in the school system. I have

fought for more therapy time, Jaunene's entire life and got nothing but

frustration especially in the school system. School based therapists sux

(putting it nicely). When a child has any type of therapy on their IEP, for a

certain amount of time per month, the " Therapist " is Consult only(1 hr a month)

and it's up to the school aide/teacher to follow through with the sessions.

BEWARE!!!! Jaunene came home with a fractured arm and a year later had her hip

forced out of socket and needed surgery!!! The biggest mistake I've done was

relying on the schools to provide Jaunene her therapy and because she WASN'T

getting therapy (as per her IEP) she got stuck in the sitting position with

knees closed shut and was in a lot of pain 24/7 for 2 yrs. The best thing I've

ever done was quitting my job and became Jaunene's aide in school and it is me

who does ALL THERAPY!! Nobody knows a child better than Mom, what the child's

limitations are, what they can do, what they have done in the past that was lost

due to no therapy and how much to push the therapy without hurting the child. It

has taken me 2 yrs to get Jaunene out of the sitting position and now have her

legs 95% extended, and using her legs for the first time in 5 yrs via ,

scooting board and swing.

> NEVER let anyone tell you or convince you that your child " can't do

something " . Our children CAN DO as long as they are worked (taught) on a daily

basis!! It took over 2 yrs of speech therapy before we started seeing signs. 10

yrs to grasp concept of Joystick on Power Wheelchair and 2 more yrs to start

Driving it, which is still in progress. 3 yrs to prove to the state that Jaunene

can in fact operate the MyTobii Eye Gaze Communication Device in order for them

to authorize her own device, which we should be getting at the end of this

month!

> So my advice to you and all parents is that YOU become your child's therapist

and be diligent on working them everyday whether you see immediate results or

not. Our kids take longer but is guaranteed you will one day see results!

>

> >

> > Hi, my ten mon. old son has bilateral PMG. I have a couple of questions. How

much therapy is everyone doing per week. Right now my son only has on hour of PT

and and hour of OT. We are currently trying to increase it with Early

Intervention, but it is not easy. I have called some out pt places and it seems

there are waiting lists everywhere.

> > Also, my son has out grown his infant tub. He still can not sit and doesn't

have the best head control. Any suggestions for a bigger tub I can use that will

give him the support he needs?

> >

> > Thanks for the info,

> > Candace

> >

>

July 9, 2012

Dear Hugz, You are right that it is the family and whoever is caring for the

child to be sure the therapy gets done. It is a struggle to find time when they

are so involved but it is worth the time.Â Learn as much as you can from other

parents, teachers and therapist then follow through with it.Â Sadly, Parents

carry a lot of guilt because it is a difficult routine to keep up but believe in

yourself and be KIND to yourselves.Â

God put these kids here and he will lead you through it.

Best Wishes to All Family of PMG Kids.

________________________________

To: polymicrogyria

Sent: Monday, July 9, 2012 11:15 AM

Subject: Re: questions? therapy and bathing

Â

Candace, my daughter Jaunene, is 18 years old with ILS/PMG. Parents are mislead

with the concept of Therapy. Everyone in the field knows 1 hr a week is not

enough to make any improvements/progress especially with our kiddos. The

Therapist basically is coming in for an hour TEACHING YOU and it is up to the

parents to follow through on a daily basis. It has always been this way

starting with Early Intervention, Numerous Therapist and in the school system.

I have fought for more therapy time, Jaunene's entire life and got nothing but

frustration especially in the school system. School based therapists sux

(putting it nicely). When a child has any type of therapy on their IEP, for a

certain amount of time per month, the " Therapist " is Consult only(1 hr a month)

and it's up to the school aide/teacher to follow through with the sessions.

BEWARE!!!! Jaunene came home with a fractured arm and a year later had her hip

forced out of socket and needed

surgery!!! The biggest mistake I've done was relying on the schools to provide

Jaunene her therapy and because she WASN'T getting therapy (as per her IEP) she

got stuck in the sitting position with knees closed shut and was in a lot of

pain 24/7 for 2 yrs. The best thing I've ever done was quitting my job and

became Jaunene's aide in school and it is me who does ALL THERAPY!! Nobody

knows a child better than Mom, what the child's limitations are, what they can

do, what they have done in the past that was lost due to no therapy and how much

to push the therapy without hurting the child. It has taken me 2 yrs to get

Jaunene out of the sitting position and now have her legs 95% extended, and

using her legs for the first time in 5 yrs via , scooting board and swing.

NEVER let anyone tell you or convince you that your child " can't do something " .

Our children CAN DO as long as they are worked (taught) on a daily basis!! It

took over 2 yrs of speech therapy before we started seeing signs. 10 yrs to

grasp concept of Joystick on Power Wheelchair and 2 more yrs to start Driving

it, which is still in progress. 3 yrs to prove to the state that Jaunene can in

fact operate the MyTobii Eye Gaze Communication Device in order for them to

authorize her own device, which we should be getting at the end of this month!

So my advice to you and all parents is that YOU become your child's therapist

and be diligent on working them everyday whether you see immediate results or

not. Our kids take longer but is guaranteed you will one day see results!

>

> Hi, my ten mon. old son has bilateral PMG. I have a couple of questions. How

much therapy is everyone doing per week. Right now my son only has on hour of PT

and and hour of OT. We are currently trying to increase it with Early

Intervention, but it is not easy. I have called some out pt places and it seems

there are waiting lists everywhere.

> Also, my son has out grown his infant tub. He still can not sit and doesn't

have the best head control. Any suggestions for a bigger tub I can use that will

give him the support he needs?

>

> Thanks for the info,

> Candace

>

July 10, 2012

I agree that you have to learn from the therapist and take it to another level.

We used our one hour of PT a week and I would then do it with him two hours a

day. Once in the morning and one in the afternoon before dinner.

However my school district is amazing! It matters where you live. Our PT will

have kids absent and she will come and get Sawyer from class to give him more

time with her.

Research your school district everyone has different programs.

Sent from my iPad