new early ed. program (long)

[Guest guest]

Sorry for cross post but wanted to share recent stuff with 2 lists.

Two weeks ago Hannah started at a new early education program, which is 1/2

hr away by car and will be three full days a week. It is for children up to

18yrs who have both hearing and vision impairment. Her enrollment was finalised

late last year and I have been looking forward to it so much, as I think the

program offered will benefit Hannah enormously. Most children there have other

severe disabilities as well as the deaf/blind stuff, so I anticipated a wealth

of experience to help me with Hannah.

There had been no communication from the school since her enrollment was

confirmed two months ago and so, on her first day, I expected to stay for a

while (to tell them about Hannah and to answer the inevitable questions) and

then to pick her up early perhaps. I was shocked to find that they were totally

unprepared for a child with uncontrolled epilepsy, who might need rectal valium

for seizures, and who also requires tube feeding. They wanted me to stay all day

for her three days that week, and probably the next week as well. Now one day I

could cope with, but three each week?!!! and in my emotional state at the time

I did not cope well at all. The first two days were gruelling to say the least,

and the intense working with Hannah and the constant concentration from 9.30am

till 2.30pm was exhausting. I take my hat off to the people who work in these

jobs. It is hard work. For me however, it was too much to cope with and to also

have to deal with Hannah and a family at each end of the day as well. I felt a

bit of a whimp but it was the truth. Also, we were having a heat wave at the

time and the entire school had only one airconditioned room, and it wasn't

Hannah's room. The conditions were intollerable, and I refused to take her on

the third day because of that.

The issue of training staff for giving rectal valium was raised by me last

year, and over the christmas holidays I had taken it upon myself to arrange for

approved training sessions. At the second of two training sessions the acting

principal asked me who was going to pay the $900 for it, as they couldn't afford

it out of their budget!!!. Well, excuse me for thinking the school would pick up

the tab for their staff development, and also have payment arranged before the

training began! I am ignoring the issue and the school can deal with the service

provider over that one. The other problem was that her teacher (new at the

school also) had no experience with children with uncontrolled epilepsy, and she

was dead scared for me to leave the room. Now, I perfectly understand where she

was coming from, but I thought it was reasonable to expect that the school

administration would employ people skilled in this area, or at least arrange for

training for staff who weren't experienced. Obviously not, so once again it was

I who arranged for a seminar to be given for the staff, by an expert from the

Epilepsy Foundation to which I subscribe. I took Hannah along even though it

wasn't her day to be there, and she obliged by giving them a beautiful (?)

demonstration of her partial seizures.

This week was better. The teacher is more relaxed and said I could leave for

a couple of hours, then wanted me back so I could observe her giving a tube

feed. She did well and I feel a bit less pressured to be around so much. She is

getting the hang of the fact that Hannah has more seizures than she will see,

and that she does not need to do anything unless they are prolonged. The PT, OT,

and Speech T have all met Hannah now, and the PT and OT in particular are so

excited about Hannah's potential, that I now feel that I can reasonably hope for

Hannah to have some intentional forward movement. Wow! I never expected that

assessment so early. These two ladies have infectious enthusiasm, which is just

what I need. The tide is turning I hope, and I will soon have 3 out of 3 kids

out of the house 3 days a week. I feel some solitude coming on. Hooray!!!!

in Melbourne, Australia

(mum to Hannah, 3yo; polymicrogyria, epilepsy, spastic quad.cp,

cortical vision impairment, dev. delay, bard button, and a brilliant smile)

[Guest guest]

Wow , sounds like you had a really grueling time. Hopefully you'll get

the rest you deserve. I would make sure they notify you if there is a

substitute though since it doesn't sound like the teachers get much support

from the school. I just toured the school Teddy will be attending in

September and the lady was fine until my husband mentioned that Teddy could

possibly have seizures. Now Teddy has never had a seizure but with PMG of

course the chances are higher than a typical child so it seemed wise to

mention it. Well the look of panic on the principals face was priceless.

She wanted to know what kind he would have if he started having them. Ha,

as if we can predict that. Well I'll just have to make sure it's on the

I.E.P. about what to do if/when he has one. What's your big plan for all

that free time?

Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

He uses sign language, runs around, rides a big wheel,

has trouble chewing & swallowing solid foods,

has 1 identical twin (without PMG), 2 big brothers

and a busy Daddy. We live in CT.

Two weeks ago Hannah started at a new early education program, which is 1/2

hr away by car and will be three full days a week. It is for children up to

18yrs who have both hearing and vision impairment. Her enrollment was

finalised late last year and I have been looking forward to it so much, as I

think the program offered will benefit Hannah enormously. Most children

there have other severe disabilities as well as the deaf/blind stuff, so I

anticipated a wealth of experience to help me with Hannah.

There had been no communication from the school since her enrollment

was confirmed two months ago and so, on her first day, I expected to stay

for a while (to tell them about Hannah and to answer the inevitable

questions) and then to pick her up early perhaps. I was shocked to find that

they were totally unprepared for a child with uncontrolled epilepsy, who

might need rectal valium for seizures, and who also requires tube feeding.

They wanted me to stay all day for her three days that week, and probably

the next week as well. Now one day I could cope with, but three each

week?!!! and in my emotional state at the time I did not cope well at all.

The first two days were gruelling to say the least, and the intense working

with Hannah and the constant concentration from 9.30am till 2.30pm was

exhausting. I take my hat off to the people who work in these jobs. It is

hard work. For me however, it was too much to cope with and to also have to

deal with Hannah and a family at each end of the day as well. I felt a bit

of a whimp but it was the truth. Also, we were having a heat wave at the

time and the entire school had only one airconditioned room, and it wasn't

Hannah's room. The conditions were intollerable, and I refused to take her

on the third day because of that.

The issue of training staff for giving rectal valium was raised by me

last year, and over the christmas holidays I had taken it upon myself to

arrange for approved training sessions. At the second of two training

sessions the acting principal asked me who was going to pay the $900 for it,

as they couldn't afford it out of their budget!!!. Well, excuse me for

thinking the school would pick up the tab for their staff development, and

also have payment arranged before the training began! I am ignoring the

issue and the school can deal with the service provider over that one. The

other problem was that her teacher (new at the school also) had no

experience with children with uncontrolled epilepsy, and she was dead scared

for me to leave the room. Now, I perfectly understand where she was coming

from, but I thought it was reasonable to expect that the school

administration would employ people skilled in this area, or at least arrange

for training for staff who weren't experienced. Obviously not, so once again

it was I who arranged for a seminar to be given for the staff, by an expert

from the Epilepsy Foundation to which I subscribe. I took Hannah along even

though it wasn't her day to be there, and she obliged by giving them a

beautiful (?) demonstration of her partial seizures.

This week was better. The teacher is more relaxed and said I could leave

for a couple of hours, then wanted me back so I could observe her giving a

tube feed. She did well and I feel a bit less pressured to be around so

much. She is getting the hang of the fact that Hannah has more seizures than

she will see, and that she does not need to do anything unless they are

prolonged. The PT, OT, and Speech T have all met Hannah now, and the PT and

OT in particular are so excited about Hannah's potential, that I now feel

that I can reasonably hope for Hannah to have some intentional forward

movement. Wow! I never expected that assessment so early. These two ladies

have infectious enthusiasm, which is just what I need. The tide is turning I

hope, and I will soon have 3 out of 3 kids out of the house 3 days a week. I

feel some solitude coming on. Hooray!!!!

in Melbourne, Australia

(mum to Hannah, 3yo; polymicrogyria, epilepsy, spastic quad.cp,

cortical vision impairment, dev. delay, bard button, and a brilliant smile)