Re: School issues was Re: Notes on my son and me (genetic testing)

August 16, 2005

Many, many years ago in Topeka they had what they called " Ungraded Rooms " ? Both

my niece and nephew had attended Capper Foundation for a good many years but

Cappers had gone as far as they could go there so both children were unable to

attend any longer. My nephew was referred to the public school system and was

in one of the " Ungraded Rooms " for a couple of years and my brother-im-law

refused to allow him to attend any longer. had been diagnosed at Capper

fFundation with Muscular Dystrophy and with Cerebral Palsy.

passed away in early 1982 and as miraculous as this may seem is in her

early 40's and is still living at home and being cared for by her Mother, my

sister-in-law. Fortunately is small for her age so my sister-in-law can

handle with aid from my brother-in-law, when she asks for help with her. My

niece age 51 works full time but is very good to help when she can. They didn't

have all the extras that are available now and I am so

thankful that children now are able to attend school " somewhere/anywhere " as

that is the only way they have a chance in this world. My heart goes out to

any/all who have a child/children that require/get the education they are able

to have. I hope this comes across the way it is meant, my Mother worked for

many years at Capper Foundation and my Aunt/Uncle were the first boarding home

parents for Capper Foundation in the city of Topeka. Children from all over

Kansas had the opportunity for an education our entire family attended the

graduation ceremony for one young man that we all became very fond on and my son

(who I lost last year) spent many evening/ weekends at my Aunt/Uncles

playing with the " Capper Kids " and had many friends at Capper Foundation, he

maintained a friendship with several of them until the time of his death last

August. TARC in Topeka finds positions for young people that otherwise would be

just sitting in a wheel chair doing nothing. Many of them ride

the Lift, as I do and they all say so proudly that they are on their way to

" work " . I thank God for companies that are willing to put a smile on the faces

of young people by finding them something to do as well as just letting them be

able to say that they are on their way to " work " . Dolores

ohgminion rakshasis@...> wrote:I am waiting to hear from the Child

Study team; I'm a bit worried I

blindsided them (they knew I was very interested in kindergarten for

the fall though), but I'd think they should have had a similar

situation in the past. He is very excited to be going to

kindergarten, although he'll miss some time because of my Boston

appointment and our MDA appointments, LOL.

My understanding is that I shouldn't offer to pay for anything, that

they should suggest options that work with their staff. At this

point, I'm not even sure if he will be considered classified in

kindergarten, as not being classified was our goal for next year

which would have been when he is eligible for public kindergarten.

What if he is not classified but still needs speech? Do you know if

the public school district has a responsibility in that case? Of

course we are thinking about the " disabled " status (504 or

something?) versus " classified " status, perhaps he can get speech

therapy as part of his 504 plan? He does not currently have a 504

plan.

Take care,

RH

> > We are getting our three kids (and ourselves!) ready for the new

> > school year. My four-year-old, who has a tentative mito

diagnosis,

> > is entering kindergarten (private, not public) in September.

Right

> > now, we'll probably pay for a speech therapist once per week to

visit

> > him there, but we may increase it to more visits.

> >

> > He is also still enrolled in his public special ed preschool

class,

> > and I'm checking with his Child Study team to see if they will

> > provide any help for him (doubt it) since he's leaving that

program.

> >

> > Maybe those of you who have worked with special kids can tell me

if

> > the public school Child Study Team has any role for children who

> > attend private school.

> >

> > Regarding myself, I don't know if I posted this but I have an

> > appointment with Dr. K's partner at the end of September. I also

> > just got back my genetic testing results from Horizon. There are

no

> > significant defects in the mtDNA (a few meaningless ones, normal

is

> > what it says). I pored over the results, and as far as I can

tell,

> > there was no nDNA sequencing done. Does anyone know if Horizon

does

> > nDNA sequencing too? I vaguely remember that it's much more

> > complicated, so I don't recall if they do it. I had been told in

the

> > past that I most likely have a nDNA defect, not a mtDNA defect.

> >

> > Take care,

> > RH

> >

> > Medical advice, information, opinions, data and statements

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The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

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> >

> > Personal attacks are not permitted on the list and anyone who

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> >

August 16, 2005

Not sure about how things exactly go with a private school and as Laurie said

you should be offered assistance, but this is what happened to us.

When my son was 2 1/2 (now 12 1/2) he was not speaking, just gesturing and

sometimes saying one word. He participated in special classes up at a local

center (actually for the mentally handicapped but they were just using a room

there). We had to bring him up there twice a week. He would have been eligible

for busing but we lived 35 miles from the site at the far edge of the county.

It was so wonderful to get him to talk when he wanted something.

At the age of 3 he worked with a speech therapist at our local elementary

school. He continued with her thru 1st grade at which time it was decided he

did not need assistance. He was still very " shy " around other kids but he did

start expressing himself more.

In Wisconsin each county provides such services. He was never labeled as

special ed or disabled--just needing speech therapy.

Janet Sample

School issues was Re: Notes on my son and me (genetic

testing)

I am waiting to hear from the Child Study team; I'm a bit worried I