Re: Homeschooling Decision Questions

[Guest guest]

Joanne Kocourek wrote:

> How did you convince your physicians that this was the best way to educate

> your child(ren)?

It was actually not my decision. It was the pediatricians and our ped neuro's

decision that she was too

medically fragile to attend public school on a regular basis. In addition, they

felt that she was not

medically stable enough to attend school, as well they felt that it would put

her at too great a risk as

far as infection. They requested that she be homebound tutored by the school

district. The tutor was

provided by the school district, and so were the books, but many of the supplies

were provided by us.

> What was the process to formally notify your school district?

The pediatrician requested a meeting with the principal, teacher, and a rep from

the district when she

first entered school. Then as time went by, we re-evaluated the situation and

made changes as needed. In

our case, we gradually increased the amount of time that Caitlin would spend in

the class room, and

decreased the home bound status, without " undoing " the original plan, so that

she could still receive

services and tutoring if her health dictated.

> How much cost is involved (Junior High level)?

The cost was the same, regardless of what grade. The only real cost incurred

was the cost to pay the home

bound tutor. Our district requires that home bound tutors be certified teachers

and they pay them by the

hour. We increased the amount of hours as the subjects became more complex.

The teachers manuals and

extra set of text books were provided by the district, and in most cases didn't

need to be specially

ordered.

> Do you feel supported, generally, in the decision?

Very much so.

Jeannine

[Guest guest]

Jeannine,

I read with great delight your insight in homeschooling. We are going to be

facing a decision very shortly with Lexi who will be 3 in March. As of yet,

she has not been anywhere without me. She does go to our private school

(where Mitch goes to kindergarten) for about 2 hours in the mornings on Tues

and Thurs, but I am right there with her every moment. I have been

agonizing, wondering HOW we will ever manage to have her go to school. But

your note about feeling supported in your decision to home school has really

helped. I still don't know how we are going to handle our situation with

Lexi, but it's so nice to hear that you've had a good experience.

ruth for the hilandgang

[Guest guest]

It has been interesting reading about home school. Our daughter Leah will be

attending school once she

turns three as she will be out of the birth to three program here in Outagamie

County. We visited one

school and saw what they did in the morning and the equipment they will use on

special need kids. I felt

good about it and the fact that the early education teacher who is in charge of

the classroom took it upon

herself to look up mitochondrial myopathy on the internet; even though we may

not be going to that

classroom. We will be looking at another classroom for comparison. But our

doctor in Madison informed us

that if a virus starts to spread through the school or we know of strep starting

in any of the classrooms

we should then take her out of the classroom and the therapists would have to

come to the home to instruct

her and give her her therapy. Are there any other schools like this or is

Outagamie County good in that

regards. Leah has been without me several times. The only thing I'm nervous

about is having her being

picked up in a school bus and transported to the school. I would rather do it

myself to say goodbye and

get her settled in. We have six months to get our plan in action. Any advice

on this?

mom to Leah 2 1/2

hilandgang@... wrote:

> Jeannine,

>

> I read with great delight your insight in homeschooling. We are going to be

> facing a decision very shortly with Lexi who will be 3 in March. As of yet,

> she has not been anywhere without me. She does go to our private school

> (where Mitch goes to kindergarten) for about 2 hours in the mornings on Tues

> and Thurs, but I am right there with her every moment. I have been

> agonizing, wondering HOW we will ever manage to have her go to school. But

> your note about feeling supported in your decision to home school has really

> helped. I still don't know how we are going to handle our situation with

> Lexi, but it's so nice to hear that you've had a good experience.

>

> ruth for the hilandgang

>

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

:

When the school district tried to insist my son have bus transport,

I told them I wasn't old enough to put him on the bus. They of course

tried to convince me, sure he was. I repeated **I** wasn't.

I wasn't comfortable with the idea and it turns out the buses are crowded

and noisy (even the special ed.) and if your child is the first pick-up,

it can add an hour of transport!

The district gets money for the transport and want to insist kids get

it, but you are not compelled to use it. Just refuse and drive

her to school yourself. That way you see what school is like, meet

the teacher, get to know more about her routine... Really much

more comforting and reassuring for you if not Leah as well.

Sue Ellen Picker

Sorensen wrote:

It has been interesting reading about home school.

Our daughter Leah will be attending school once she

turns three as she will be out of the birth to three program here in

Outagamie County. We visited one

school and saw what they did in the morning and the equipment they

will use on special need kids. I felt

good about it and the fact that the early education teacher who is

in charge of the classroom took it upon

herself to look up mitochondrial myopathy on the internet; even though

we may not be going to that

classroom. We will be looking at another classroom for comparison.

But our doctor in Madison informed us

that if a virus starts to spread through the school or we know of strep

starting in any of the classrooms

we should then take her out of the classroom and the therapists would

have to come to the home to instruct

her and give her her therapy. Are there any other schools like

this or is Outagamie County good in that

regards. Leah has been without me several times. The only

thing I'm nervous about is having her being

picked up in a school bus and transported to the school. I would

rather do it myself to say goodbye and

get her settled in. We have six months to get our plan in action.

Any advice on this?

mom to Leah 2 1/2

hilandgang@... wrote:

> Jeannine,

>

> I read with great delight your insight in homeschooling. We

are going to be

> facing a decision very shortly with Lexi who will be 3 in March.

As of yet,

> she has not been anywhere without me. She does go to our private

school

> (where Mitch goes to kindergarten) for about 2 hours in the mornings

on Tues

> and Thurs, but I am right there with her every moment. I have

been

> agonizing, wondering HOW we will ever manage to have her go to school.

But

> your note about feeling supported in your decision to home school

has really

> helped. I still don't know how we are going to handle our situation

with

> Lexi, but it's so nice to hear that you've had a good experience.

>

> ruth for the hilandgang

>

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

-------------------------- eGroups Sponsor -------------------------~-~>

eLerts

It's Easy. It's Fun. Best of All, it's Free!

http://click./1/9699/15/_/368657/_/972752811/

-------------------------------------------------------------------->

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

[Guest guest]

At 11:04 AM 10/27/2000 -0500, you wrote:

>For those who homeschool their children...

>How did you convince your physicians that this was the best way to educate

>your child(ren)?

Joanne, I am not clear if you are talking about home schooling , (parent =

teacher) or home bound services, (school district provides the teacher).

Both Zachary and Sam receive home bound services from our district. I did

not have to convince the doctors . They were very clear that neither child

could be in school full time. Zachary is 8 and he attends school 3 days

from 8:30 until 12:45. In addition to that the district sends a certified

teacher for 6 hours a week to our home as well as for 12 hours a week to

the hospital if he is inpatient , which he is every month for 6 days.

Sam is 3 and can not handle more than the one visit he gets a week from the

early education specialists . He continues to get private PT, OT and ST

through the Children's hospital so he would not have the endurance for more

than one visit a week from the district. Sam is too immune compromised to

go to school so it was a very easy decision for the doctor, teachers and I.

>What was the process to formally notify your school district?

I just told them what the doctor wanted and the doctor had to fill out a

form which asks for justification of why a child can not be serviced in the

school. Our doctor usually writes a letter as well. Then the school has

to note on the IEP that the child can not be serviced in school due to

medical fragility.

>How much cost is involved (Junior High level)?

Not sure as we are not there but our cost is zilch at this level. The

district provides anything the kids need to be successful .

>Do you feel supported, generally, in the decision? The last thing I need

>now is more criticism regarding educational issues.

We are very supported both by the doctors and the school system. The

people at the school always tell me that their primary objective is to

always keep the kids healthy and that anything they can do to support their

healthy - they want to do. They are so good about letting me know of any

special events coming up in case i would like to send Zachary if it is a

time he does not normally come - for example they will call and say that on

Tuesday they are doing a special party for good behavior or on Friday they

are having a special speaker at 2:30. But they always qualify it with

saying that they are only informing me and never want me to feel that they

think he has to be there - they simply want him included if he feels well

enough. The fact that they send a teacher to the hospital makes me feel

really good about things because this is not something that they are

legally bound to do - he could receive instruction from the hospital

teachers but they felt it was important for him to have continuity from one

district.

Our doctors are supportive as well. They always say that they want the

kids to have as normal a life as possible yet maintain their health and for

us this is the way that we need to do it.

I think that if it is the right decision for a child in general the doctors

are the ones that you won't have any problem convincing ...they usually see

the need for home bound before you do. I have heard that some school

systems are not as good about it as ours is but I think that if the doctor

tells them that this is the way it will be they really have no choice but

to comply and support you.

Anne

[Guest guest]

At 10:50 AM 10/28/2000 -0500, you wrote:

> The only thing I'm nervous about is having her being

>picked up in a school bus and transported to the school. I would rather

>do it myself to say goodbye and

>get her settled in. We have six months to get our plan in action. Any

>advice on this?

when Zach was 3 i was worried about that too and in fact did drive him

for the next few years. Just wanted to throw that out in case you did not

know that you do not have to put her on the bus if you really feel

uncomfortable with it. The district p[resented it to me as if all kids

take the bus but when i asked if i could drive they said " well of course

you can. " I would say that 1/2 the kids in his class of 8 were bussed that

first year and 1/2 were not. Do whatever feels best to you.

Anne

[Guest guest]

Sorensen wrote:

> We visited one school and saw what they did in the morning and the equipment

they will use on special need

> kids.

My older daughter who also has mitochondrial disease, started to kindergarten

with the understanding that she

would only be there for half day. Most of the content was in the morning and

each year they tried to place

her in a class where most of the academic stuff was in the morning, so she

didn't miss that much. She missed

a lot and from the very beginning they waived the attendance requirement. If

they were walking very far, they

had a red wagon for her to ride in and it all worked out very well with her.

She continued to only attend

part of the day, until almost third grade, I believe. When she was at school

she would periodically go to the

nurses office and lay down, to rest. This was all arranged ahead of time and

they were very cooperative.

Something else that we also did with my older daughter was to feed her more

frequently, and less volume with

each feeding. Again they were very cooperative, because they understood the

need from the beginning. Snacks

were always kept in the classroom and in the office for her.

> I felt good about it and the fact that the early education teacher who is in

charge of the classroom took it

> upon herself to look up mitochondrial myopathy on the internet; even though we

may not be going to that

> classroom.

We have written up a brief explanation of what mitochondrial disease is, and

explained that it is a disease of

energy metabolism. Each teacher gets a copy of this document each year. With

each modification that we have

requested, there is an explanation that illustrates why the disease makes that

modification necessary, in

simple, easy to understand terms. This made it much easier for the teachers to

understand, and meet her

needs.

> But our doctor in Madison informed us that if a virus starts to spread

through the school or we know of

> strep starting in any of the classrooms

> we should then take her out of the classroom and the therapists would have to

come to the home to instruct

> her and give her her therapy.

We did this as well. It is written into my younger daughter's 504 program that

if there is widespread

illness, or chicken pox or flu, then they are to notify us imediately so that we

can keep her home. In

elementary school, each year at open house in her classroom the teacher made a

brief announcement to the

parents that there was a special needs child that was at risk. She asked that

they be extra conscientious

about not sending children to school sick, and that they inform the school with

any serious illness. This

helped imensely.

> Are there any other schools like this or is Outagamie County good in that

> regards.

Actually our school system has been wonderful in meeting both of my girls needs,

all the way through. My

older daughter graduated last year and is now in college. My younger child has

been homebound tutored and

gradually assimilated into the school system. She is now able to attend 5 days

a week, for the first time, in

seventh grade. But they still have her designated as home bound tutored,

because of medical fragility, so

that she is eligible for services if she misses a lot.

> Leah has been without me several times. The only thing I'm nervous about is

having her being picked up in

> a school bus and transported to the school. I would rather do it myself to

say goodbye and get her settled

> in.

One thing that we did for both girls was, instead of sending them first thing in

the morning, and having them

go to the playgroud with all the other kids, we brought her in a little bit

late, just as they were getting

seated and getting attendance, lunch count etc, done..... This was the teachers

suggestion, and it worked

well. That way if someone showed up coughing a lot, they could meet us at the

door, and let us know, so we

could take her back home. It also was safer for Caitlin, since she was not very

steady, and had fragile

bones.

Our pediatrician wrote the original request for accomodations for my daughter

and the ped neuro has updated it

each year, specifying what her needs are. If your child has a mitochondrial

disease, they would certainly

qualify under " Other Health Impaired " guidelines of IDEA. With a doctor's

request, they have to comply to any

reasonable requests. I would suggest you discuss this with your doctor and come

up with a plan, ahead of

time. You can write up what you think her needs are and see what he thinks and

then have him dictate a

letter.

The difficult part of all of this, is that there are so many things that we as

parents do for our children

that make their quality of life, so much better. Hopefully you can convey that

to the school system and not

compromise her quality of life, nor her stability. It definately is a team

effort.

Jeannine

[Guest guest]

Ruth wrote:

> I read with great delight your insight in homeschooling. We are going to be

> facing a decision very shortly with Lexi who will be 3 in March. As of yet,

> she has not been anywhere without me.

We were in the same boat. Caitlin actually spent most of the first three years,

in the hospital and was

not really stable enough when she was home to attend preschool much. When it

was time for kindergarten,

it was our pediatrician decision to put her on home bound status, although I

wanted her to be a part of a

classroom even if she were only able to attend once in a while. We made an

arrangement with the school

district to have her assigned to a classroom, purely for socialization. She was

only able to attend

school for a couple hours every week or two, but our original intent was to try

to have her attend one

half day per week, and for any special activities. The school district sent a

tutor to the house or the

hospital the rest of the time.

> She does go to our private school

> (where Mitch goes to kindergarten) for about 2 hours in the mornings on Tues

> and Thurs, but I am right there with her every moment.

I stayed at the school as well. That way the responsiblity was not on the

teacher to meet her medical

needs, and I could take her home when necessary. Later when we started having

nursing care, her nurse

went to school with her and still does to this day. The other option, is to

request that your child have

an aid if necessary.... but that doesn't allow them quite as much independance.

> I have been

> agonizing, wondering HOW we will ever manage to have her go to school.

I can remember thinking the same thing.... I actually never thought I'd see the

day when she would be able

to attend all day. But she is now. She has gone from either me or a nurse

being actually in the

classroom with her, to being just outside the classroom, to just being in the

building. She visited

school when she was stable, maybe 1/2 day, once a week, in elementary school,

and then gradually increased

the amount of time she spent in the classroom until she finally made it 5 days a

week this year. The

school is still very flexible, and originally schedule her with no first period

class, and no last period

class, so that she wouldn't be as tired. Until this year, she never went in to

school until 9:00 and that

also made it easier for her.

> But

> your note about feeling supported in your decision to home school has really

> helped.

I relied very heavily on my ped's input, and that made making decisions much

easier. We have gradually

tried to increase, always knowing that it may or may not work. But my feeling

has always been that if we

didn't try it, we would never know.

There is some degree of stability, I believe that comes around the age of 5 - 7

years of age. At least

that is what it seemed with my girls. While there were still serious medical

issues, things did seem to

get easier to manage. It just didn't seem as overwhelming as it did when she

was a toddler - so take

heart. I think it also gets easier the older they get, if they can communicate

some of their needs.

> I still don't know how we are going to handle our situation with

> Lexi, but it's so nice to hear that you've had a good experience.

I really can't say enough good things about our school district. They have

always had Caitlin's best

interest at heart. They have never pressured us to send her more often, or get

her off home bound status,

nor have they pressured us to keep her at home when we wanted to increase her

attendance. I hope your

experience is equally as positive.

Up until now, Caitlin really required a lot of one on one instruction, and was

not able to write very

much. She did a lot of work orally, but she did well, if we could meet these

needs. Now she is not only

in a regular classroom, but she is taking two honors classes. They still make

modifications for her, to

help with fatigue issues and writing. But she can do they work, if we give her

ample time and she is

loving it.

Jeannine

[Guest guest]

One very good source of info online is www.wrightslaw.com.

Jayne

[Guest guest]

Hi

has been homebound for all his years-senior this year. The

school has providied a regular classroom teacher, a gifted teacher, a college

math teacher , and therapists. If your child is evaluated as

medically impaired then the system gets the highest amount from the state

to provide an equal education. Be sure they use it on your child.

Good Luck

Lonnie

"Anne K. Juhlmann" wrote:

At 10:50 AM 10/28/2000 -0500, you wrote:

> The only thing I'm nervous about is having her being

>picked up in a school bus and transported to the school.

I would rather

>do it myself to say goodbye and

>get her settled in. We have six months to get our plan in

action. Any

>advice on this?

when Zach was 3 i was worried about that too and in fact did

drive him

for the next few years. Just wanted to throw that out in

case you did not

know that you do not have to put her on the bus if you really feel

uncomfortable with it. The district p[resented it to me as

if all kids

take the bus but when i asked if i could drive they said "well

of course

you can." I would say that 1/2 the kids in his class of 8

were bussed that

first year and 1/2 were not. Do whatever feels best to you.

Anne

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

[Guest guest]

Dear Sue Ellen:

Thanks for the advice. I just feel Leah is so small to me yet.

And because she is nonverbal I feel alittle leery of putting her on the

bus. It seems our buses they use are small; but I'm not that far

from the school, if it is the one we will use. I quess I need to

see the bus and how they transport before saying no completely. But

thanks for the input and to stick to my guns if they say please use it.

Sue Ellen Picker wrote:

:

When the school district tried to insist my son have bus transport,

I told them I wasn't old enough to put him on the bus. They of course

tried to convince me, sure he was. I repeated **I** wasn't.

I wasn't comfortable with the idea and it turns out the buses are crowded

and noisy (even the special ed.) and if your child is the first pick-up,

it can add an hour of transport!

The district gets money for the transport and want to insist kids get

it, but you are not compelled to use it. Just refuse and drive

her to school yourself. That way you see what school is like, meet

the teacher, get to know more about her routine... Really much

more comforting and reassuring for you if not Leah as well.

Sue Ellen Picker

Sorensen wrote:

It has been interesting reading about home school.

Our daughter Leah will be attending school once she

turns three as she will be out of the birth to three program here in

Outagamie County. We visited one

school and saw what they did in the morning and the equipment they

will use on special need kids. I felt

good about it and the fact that the early education teacher who is

in charge of the classroom took it upon

herself to look up mitochondrial myopathy on the internet; even though

we may not be going to that

classroom. We will be looking at another classroom for comparison.

But our doctor in Madison informed us

that if a virus starts to spread through the school or we know of strep

starting in any of the classrooms

we should then take her out of the classroom and the therapists would

have to come to the home to instruct

her and give her her therapy. Are there any other schools like

this or is Outagamie County good in that

regards. Leah has been without me several times. The only

thing I'm nervous about is having her being

picked up in a school bus and transported to the school. I would

rather do it myself to say goodbye and

get her settled in. We have six months to get our plan in action.

Any advice on this?

mom to Leah 2 1/2

hilandgang@... wrote:

> Jeannine,

>

> I read with great delight your insight in homeschooling. We

are going to be

> facing a decision very shortly with Lexi who will be 3 in March.

As of yet,

> she has not been anywhere without me. She does go to our private

school

> (where Mitch goes to kindergarten) for about 2 hours in the mornings

on Tues

> and Thurs, but I am right there with her every moment. I have

been

> agonizing, wondering HOW we will ever manage to have her go to school.

But

> your note about feeling supported in your decision to home school

has really

> helped. I still don't know how we are going to handle our situation

with

> Lexi, but it's so nice to hear that you've had a good experience.

>

> ruth for the hilandgang

>

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

-------------------------- eGroups Sponsor -------------------------~-~>

eLerts

It's Easy. It's Fun. Best of All, it's Free!

http://click./1/9699/15/_/368657/_/972752811/

-------------------------------------------------------------------->

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.