Re: Convention?? ERICA HERRING

[Guest guest]

Hi a,

 

I must apologize, I read your email and I am not quite understanding what you

are asking.  I understand that you are asking about staying with a family?  Do

you mean if you come to the convention?  Please explain.  I want to help you

with what ever you need, but I need to understand what you are asking.

 

Thanks

Robin

From: <shell2040aol (DOT) com>

Subject: Re: Convention??

To: polymicrogyria@ yahoogroups. com

Date: Thursday, July 10, 2008, 6:56 PM

Hi Annelies,

Alyssa is almost 5 years old. She is doing pretty well... We have

been doing Conductive Education for the past year and a half and have

started doing an intense Physical Therapy program and Suit Therapy at

EuroPeds in Pontiac, MI. Conductive Education was the major turning

point for Alyssa though with control, attitude and just coming alive.

We moved to be close to the private school that does the program in

Grand Rapids, MI and plan to stay close so that she can continue to

benefit from their program for as long as possible.

Finlay and Alyssa do sound to have very similar issues. It is hard to

know that Alyssa understands most everything anyone says around her

but that she cannot communicate back much, besides fussing, she has

that down and doesnt hesitate to throw a tantrum when she is

misunderstood or not being listened to.

We got a computer to help Alyssa comumiate, a Mercury, but she hates

it! We tried a round of speech therapy with it but that only made her

hate it more and she started to hate us more and more the more we

pushed her to use it, even though we tried to make it fun for her. So

we are back to using pictures, which isnt going over well either but

we are sticking to it as it atleast works when nothing else does. I

am just so busy and so tired that I do not have enough time nor

energy to keep up with making the new pictures that I need. It seems

that most children have the Dynavox computer...wonder if that would

have been better...

It was so great when Alyssa learned to say " yeah " and shake her head

for no and to point. Those things have made life so much easier,

although they take time as she has to work to for the word or make

the movement. That makes it hard for others to interact with her. I

have to keep reminding them to wait for her response.

Alyssa's feet have started to bother her a lot and wake her up at

night in spasms. She points her toes to the extreme and even though

her new braces, dAFOs, are great, she wont sleep in them or even

leave them on for all of her awake hours. I give her massages a lot

and try and do sage baths with very warm water atleast once a day.

Those two things are very helpful! She has super high tone.

Her drooling comes and goes, depending on her energy, mood and head

control but usually is an issue. She is still on the majority of

baby food but I try and try to work in the regualar table foods.

There is a lot of bargining at feeding times with her! Atleast she is

drinking out of a cup now. She has only done that since starting

Conductive Education a year and a half ago. Before that we fed her

liquids out of a medicine dropper as she wouldnt take a bottle

anymore, nor a sippie cup or regular cup. Her mouth control is

terrible and it takes her a lot of concentraion to get through

feeding or drinking still but its gotten a lot better.

She also has seizures, along with being allergic to peanuts. She grew

out of her egg allergy but still wont eat plain egg. She has been in

therapy and school since she was 5 months old. She had two grand mal

seziures when she was 3 months old that changed her completely from a

typical infant and began her struggles...

Tell me more about Finlay, how is he doing? How are you doing?

Take care,

and Alyssa

[Guest guest]

shelly can you ggive me some info on the conductive ed and how much it is ,maybe

i could find family to stay with i would only be able to come the money for the

camp and transportation erica from me

From: <shell2040aol (DOT) com>

Subject: Re: Convention??

To: polymicrogyria@ yahoogroups. com

Date: Thursday, July 10, 2008, 6:56 PM

Hi Annelies,

Alyssa is almost 5 years old. She is doing pretty well... We have

been doing Conductive Education for the past year and a half and have

started doing an intense Physical Therapy program and Suit Therapy at

EuroPeds in Pontiac, MI. Conductive Education was the major turning

point for Alyssa though with control, attitude and just coming alive.

We moved to be close to the private school that does the program in

Grand Rapids, MI and plan to stay close so that she can continue to

benefit from their program for as long as possible.

Finlay and Alyssa do sound to have very similar issues. It is hard to

know that Alyssa understands most everything anyone says around her

but that she cannot communicate back much, besides fussing, she has

that down and doesnt hesitate to throw a tantrum when she is

misunderstood or not being listened to.

We got a computer to help Alyssa comumiate, a Mercury, but she hates

it! We tried a round of speech therapy with it but that only made her

hate it more and she started to hate us more and more the more we

pushed her to use it, even though we tried to make it fun for her. So

we are back to using pictures, which isnt going over well either but

we are sticking to it as it atleast works when nothing else does. I

am just so busy and so tired that I do not have enough time nor

energy to keep up with making the new pictures that I need. It seems

that most children have the Dynavox computer...wonder if that would

have been better...

It was so great when Alyssa learned to say " yeah " and shake her head

for no and to point. Those things have made life so much easier,

although they take time as she has to work to for the word or make

the movement. That makes it hard for others to interact with her. I

have to keep reminding them to wait for her response.

Alyssa's feet have started to bother her a lot and wake her up at

night in spasms. She points her toes to the extreme and even though

her new braces, dAFOs, are great, she wont sleep in them or even

leave them on for all of her awake hours. I give her massages a lot

and try and do sage baths with very warm water atleast once a day.

Those two things are very helpful! She has super high tone.

Her drooling comes and goes, depending on her energy, mood and head

control but usually is an issue. She is still on the majority of

baby food but I try and try to work in the regualar table foods.

There is a lot of bargining at feeding times with her! Atleast she is

drinking out of a cup now. She has only done that since starting

Conductive Education a year and a half ago. Before that we fed her

liquids out of a medicine dropper as she wouldnt take a bottle

anymore, nor a sippie cup or regular cup. Her mouth control is

terrible and it takes her a lot of concentraion to get through

feeding or drinking still but its gotten a lot better.

She also has seizures, along with being allergic to peanuts. She grew

out of her egg allergy but still wont eat plain egg. She has been in

therapy and school since she was 5 months old. She had two grand mal

seziures when she was 3 months old that changed her completely from a

typical infant and began her struggles...

Tell me more about Finlay, how is he doing? How are you doing?

Take care,

and Alyssa

[Guest guest]

Hi a,

Here is what Alyssa school's website, the Conductive Learning Center

in Grand Rapids, MI, lists about Conductive Education...

" Conductive education is an intensive, multi-disciplinary approach to

education, training and development for individuals with cerebral

palsy, spina bifida and other motor challenges.

Developed in 1945 in Hungary by Dr. Andras Peto, conductive education

is based on the theory that the central nervous system has the

capacity to form new neural connections, despite neurological damage.

By repeating tasks and integrating intentional movement with

learning, the brain creates alternate paths to send messages to

muscle groups, creating the desired movements. Through this, a child

can gain movement and skills, and achieve greater levels of

independence.

The critical element of conductive education is the integration of

motor-skill development with cognitive and emotional-skill

development within a group setting. Most children with motor

challenges do not learn exactly the same way as their peers.

Conductive education helps these students build their cognitive

skills and helps them learn to use alternate strategies to learn.

This total approach to learning and training targets children under

the age of six, when the potential for impact is greatest, and when

they can be prepared for the traditional classroom. "

" What can I expect my child to achieve in the program?

The program works with the whole child; that is, the child's

developmental needs are addressed from a cognitive, psychological,

emotional and physical perspective. After the child is assessed by a

conductor, specific goals are set for the child. Each child's route

and timeline toward maximum independence depends on many factors,

including the support of the family, the child's motivation, the type

and severity of the disability and the age of the child.

Why does the program use a group setting?

Conductive education uses the dynamics of group interaction. This

setting provides the opportunity for children to motivate and learn

from each other, while in an age appropriate setting that allows

social interaction. "

There website is www.aquinas.edu/clc

The school has a partnership with the local Mc house,

where up to 7 families from the school can stay at a time. They ask

for $10-20 a night but payment is up to each families financial

situation. The house provides most everything you need. Food is

donated and they have a van that will transport you to school and

back and would pick you up at the local airport and take you back, if

you flew in.

In regards to how much it costs...that depends on the program that

your child would be in and if you are in state or out of state. Check

out their Programs & Tuition page to get more detailed information

for your exact situation. There school has a lot of ideas for ways to

come up with the money for the program. Lots of families do

fundraisers or contact local businesses regarding donating money for

the program and trip costs.

Let me know if you have any other questions!

Take care,

and Alyssa, almost 5yo, BFPP, spastic quad CP, seizures, dev.

delayed, feeding troubles...