[mito] school question (kindergarten) - long

April 20, 2005

Private schools and charter schools have to make improvisions to accept the child... if they dont you can sue them... We did this round a few years ago with my son... if they dont have speech therapsit ect they have to hire them for your child... sometimes its a huge battle...

April 20, 2005

Hi everyone,

I know that you all have a great deal of experience in this area. Asher

just turned four so I have a year to be preparing for all of this but I

feel like it's important to get the ball rolling. My dh teaches at a

local private school - it is considered one of the best in the area and

very competitive to get in. Typically, faculty kids always get in

unless there are some academic issues or learning issues that make it

so the child isn't ready fo rkindergarten. Also, we will get a large

discount. So... my first choice would be for Asher to go there. My dh

has worked there for over 12 years and is the chair of two departments,

but I'm still concerned that the school will refuse Asher because of

his special needs. Anyhow, I'm planning on meeting with the head of the

lower school in May so that I can get a better idea whether they will

accomodate Asher's needs or we will need to look at public schooling. I

want to have an idea about this now so that, come fall, when the

application process starts, I know whether I need to be working to get

the public school kindergarten on board for Asher's needs for the fall

of '06.

I have so many mixed feelings about talking to the head of the lower

school. I'm so afraid that they will tell me that 'oh, we will do this

and that' and then they will refuse to accept Asher come next January.

And, I know I need to be honest about Asher's needs. The areas that

concern me most are: fatigue - will they make adjustments if he can

only go 1/2 days (how will we arrange the academics? can they be in the

morning? if not, we will take care of the extra homeschooling - I don't

expect them to provide a tutor or anything - that has to be at our

expense); many absences (again due to fatigue, illnesses - I think

Asher has gone to school about 6 weeks since January); adapated PE; and

the need for his wheelchair (which I hope we have by then) for field

trips and any special seating that I can provide; tube feeding - I will

come to the school and bolus him if the nurse is not comfortable. I'll

go on the field trips to deal with the wheelchair. I really plan on

being available in whatever way I need to be. Again, I don't expect

them to pick up the expenses but I do expect them to make other

accomodations - esp. dealing with short days and multiple absences. ARE

THERE OTHER AREAS THAT YOU ALL CAN THINK OF THAT I SHOULD PRESENT TO

THEM? DOES IT MAKE SENSE TO YOU ALL HOW I WANT TO DEAL WITH THIS?

I know that you guys are great in reminding me that all I can know is

what is happening with Asher today, but I can't help but worry that by

the time he hits kindergarten, he will have a whole host of other needs

givent the nature of mito. BUT, I wasn't planning on saying that to the

head of the lower school! I'll stick with what I know today.

Also, as I'm writing this, I'm thinking that I will have to pursue

other schools (public probably) so that we have a back up plan. Ugh. I

have not envied you all fighting for IEPs etc. and I'm not eager to do

that. Also, our local public school is not a great one. Plus, I think

Asher may have another set of academic needs - I think he may, at this

point, qualify for " gifted " . Asher's brother, Sam, is incredibly bright

(I always feel uncomfortable talking about this, but it's a reality for

him - his scores are very high and his school has had to find a number

of new ways to challenge him and still they tell me that he's by far

their best student in his grade). Asher is similar intellectually to

Sam, I think, and Asher has just begun to read and can spell his name,

mom, dad, cat, the. I know that this can change because of the disease,

but right now, Asher really excels. Anyhow.. you get the picture. So,

if he does qualify, how do the public schools deal with kids in the

" gifted " class with the special needs like I've mentioned above?

Then again, am I just nuts to be thinking about regular school? I mean,

if he's missed this much this year and the previous year. Maybe I need

to think about home school? But, Asher is SO social - I think he'd be

so lonely at home.

Anyhow, I appreciate any and all input as I'm stuck!

Thanks in advance!

Anne R - mom to Asher (mitochondrial disease, complex III defect and

partial complex I defect)

April 20, 2005

From what I understand a private school does not have to go out of there way to adapt, but I do not think they can outright reject him for his disability. That would really infringe on the Americans with Disabilities Act. I would think they would have to provide things like wheelchair ramps and the like so he can physically attend school. I'm not sure how it would go for absences and that type of thing. With proper medical info, they probally would adapt especially if his dad works there. They still have to honor his IEP.

On the other hand public school is required to do whatever the doctor sees fit. Education and Medical handicaps are completely seperate. Just because Asher may require a wheelchair will not automatically put him in special ed. There should not be much of a problem at all regarding his physical demands since most schools have delt with it before. I guess it ultimatly goes down to the individual school system. While they all are required to do the same thing, some are better some are worse.

We are going through similar situations with Grace. She is just transitioning to get ready for preschool. I know, at least, Dr. Cohen has a pre written form letter for school systems to inform them of the special needs of mito kids. Something like that would be very handy when it comes IEP time.

Best wishes

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April 20, 2005

Dear Anne,

You are absolutely nor wrong to be thinking this way. I have been in your

position exactly with the dilemma of my 2 girls, who are now in heaven.

Samya and leanna were both in private school for as long as they could be

until I felt it was too stressful and the public school became an option

when what services they would provide were more needed. I will talk about

Leann only and my own experience, but of course evry public school is

different. Leanna went to private school fromage 3 in preschool and then to

kindergarten and then we had her repeat kindergarten the year her sister

died. I did not want to leave the private school unless I absolutely had to

because it was small, loving, nurturing and my church and the happiness

leanna had there was amazing and her comfort level. However, they did there

best but they were mot professionals when it came to special needs. Because

of their love for Leanna, they went out of their way to accommodate he rand

I was right there helping make all the calls. It sounds like you would also

be right there like I was. With mito, I knew her level of ability could

change quickly with one illness. Leanna fell a lot and would wear a helmet

but I was always scared because she did not have ONE SPECIFIC person in

charge of her and Leanna would run and come home weekly with bruises.Long

story short, I kept in in private school for as long as I felt (and as amom

you will know) the positives were outweighing the negatives and that her

health was not in danger. However, I always had a yearly IEP up to date for

her in case I suddenly have to put her in public school because if you wait,

it takes forever. Having a diagnosis helps a lot and that was the diference

between dealing with the public school between my girls. I took it on eday

at a time and sure enough, in January of her second time around in kinder,

she had a crisis that she got through but it put her so behind. This year

was her first grade year and we put her in public school. They were amazing

and plus they knew Samya so that helped because Samya died while attending

3rd grade there. The best thing I did was to get a Teacher student assistant

for Leanna. It was not easy but I would not take no for an answer and I got

it. She was hired by the school(with my approval after interview) to be in

charge of Leanna and that was her job. I considered her leanna's body guard.

She would hold Leanna's hand always on the playground and leanna did not

fall once this year, she was educated about mito from me and she helped

Leanna with everything she needed but also gave he independence as needed.

Leanna loved her very much and she took so much stress from Leanna and the

result was an amazingly happy healthy year. Her TSA was in charge of keeping

her healthy by constant hand washing, etc to keep her from germs. Children

on their own do not do it in school but Having someone in charge of that and

Leanna did not get sick once except the first sickness she got took he life

in 14days. You know what your child needs and whatever decision you make

will be the best for him. Leanna was a social butterfly and loved school

very much, did so well academically this year but when it was time for God

to take her, I could not do anything about it.All the things you considered

are very important and you are completely right in thinking about them. When

Leanna was in private school, I had a lot of stress because I had to be so

involved in order for it to work for her, but in public school they took a

big load off of me. Of course, the public school needs to be a good one that

is willing to be on your side and care about what is good for your child. I

am confidant you will make the right decisions for Asher. Good luck and God

bless you,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

(died 3-20-05)

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

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AiM Chat: Suhad1970