School Advice

[Guest guest]

I know a lot of you guys went to school, Brett was homebound his 1st year of

preschool and went for 2 days a week his second year. This year in Kindergarten

he is doing homebound but next year he wants to go. I am sending him but for now

only half days. My reasons include how fatigued he gets and he takes approx an

hour to eat and can only chew certain foods easily- so for now neither he nor I

am comfortable with someone else feeding him. When he went to preschool for 2

days a week, 3 hours per session- he was exhausted the whole week. I think a

full day would be something we need to work up to. Anyways, here is a breakdown

of our plans.....does anyone have any advice about any of it. I really

appreciate your help!

-He would attend half days until lunch time then I could come and get him. Maybe

the teacher would be able to arrange to send home with me what the class will be

working on the rest of the afternoon and I can do it with him. I am also

thinking if he is doing a lot of writing during the morning time that the

worksheets need to be made into computer accessible sheets for the afternoon or

have the ability for work he may not finish during the morning to be made

computer ready. This would be very easy and I am sure the school district has a

scanner. It would need to be equipped with an OCR editable text recognition

program. The worksheet would only need to be scanned and e-mailed to Brett and

then he would do it via computer, save it and send it back to his teacher. Brett

has his own computer set- up with adapted equipment so he can be online and do

just about anything.

-Another concern is he would need a full time aide while he is at school to help

him with his head and paper positioning and maybe even manipulating class

assignments. I would like to be able to approve whomever would be chosen to make

sure we feel comfortable with him/ her and that he/ she fully understands

Brett's needs.

-Also, during cold/ flu season- the ability to change him back to homebound for

2-3 months if the season is especially brutal. I know Lee's Summit District was

up for this, so I hope it will be okay. I though that I might also mention that

I do have a bachelors degree and have substitute taught...so if a teacher for

homebound instruction could not be found- maybe I could fill in. In this case

(or likewise), I would also like Brett to have the ability to communicate with

his class via e-mail or letters.

I don't think I am leaving anything out. I think the main question is could we

generate an IEP to include all of this? Or would a notice to change the IEP have

to be made for each change throughout the school year? I do know in other school

districts (out of state)- some of Brett's friends have this included in their

IEP's but I do not know if the rules change per state.

Kristal

Mom to Brett- SMA II- 6 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Visit to ob/gyn

Well Danny (my bf) & I had our first visit with the ob/gyn that specializes

in high risk pregnancies, and we were very impressed. After she examined me

and asked me many questions about my irregular cycles, she said that she

thinks that I'm in my 12th to thirteenth week instead of 10. The baby's

heartbeat is strong and she/he is about three and a half inches long. My due

date is November 1st. I told her about my fears of loosing muscle function

and not having room for the baby to grow. She said that she is putting

together a team consisting of both my neurologist and pulmonist, an

anesthesiologist; a physiatrist, a nutritionist, and an OT, PT, and RT all

of which will be working closely with me. She also said that by the position

of my uterus, the baby will probably grow more out than up and I will carry

it very low. Already I can feel pressure when I cross my legs. My waist has

grown 6 inches.

I'll be posting belly photos soon!

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[Guest guest]

thanks ! sorry it took me forever to reply!

Kristal

Mom to Brett- SMA II- 6 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Re: School Advice

Hi Kristal*

I had an aide w/ me K-12. I *love* her. She was responsible for all of my

physcial needs such as carrying my books/hmwrk, feeding, postioning, range of

motion, bronchial drainage, toiletting, taking notes. When I missed class she

would go to the class and both tape the lecture AND take notes.

As I got older and my SMA progressed and I was trached and I got nurses who

*could* do her job the school decided to keep both the aide AND the nurse

following me around. For a teenager to be followed around by TWO people in high

school was very annoying!

I guess my advice would be to interview the aide to make sure your sons being

cared for properly. I've always directed my own cares and also attended all the

IEP mtg's and as I got older they also took into consideration my social life

becz I started to isolate from my friends when I couldnt feed myself anymore so

I had a cheerleading position to include me in after school activites.

The *normal* IEP is reviwed twice through the school year, you could ask for

it to be in the IEP that it was review more often...?

Good luck!

Jodi & Maggie May

Accessible Travel

Disability Travel Specialist and Service Dog

" Making a way for YOU to get away! "