RE: New to list-glad for any helpful info or advice/Thanks-(long)

[Guest guest]

Thanks for your reply. Much of my frustration was that last Friday

the school counselor, just doing her job of course, called and

basically said that if I didnt have him back in school soon I would

be taken to court. This is a week after she gave me the info for

getting him put on the homebound program. So mostly I was ticked off

about that and didnt want to give in.

This morning I took him straight to the nurses office. The school has

a new nurse this year and I had not yet met her. Had her predecessor

still been there I think I would have already spoken with her on the

phone. She was great. Anyway we sat down and I quizzed her about what

she new about JRA. Although she didnt know much she was very

understanding and supportive. I let her know what I knew so far and

what was going on because she was totally unaware of the situation.

Even though I had been clear about what his needs would be the first

time I spoke to the counselor.

We took my son to class and got him settled in which was hard becuase

just as we got there half the class was lining up at the door to go

to computers. So my son was a bit overwhelmed. His teacher was great.

She let me come in (they usually dont want parents in the classroom

the first 6 weeks) and help. She gave him some really easy work to do

which helped his self confidence.

His classmates are really great and helpful. Of course they have lots

of questions. I need to sit down and figure out the best way to

explain JRA to 1st graders. He attends a Montessori school within our

public school district. In the beginning grades they do a lot of work

on the floor. So his classmates were really good at helping him walk

around and get up and down on the floor. Which I know is not

appealing to him but good for him.

I am familiar with IEP. Last year I was trying to get the school to

evaluate my older son for ADD. Which they never did. Which is why I'm

so negative about the counselor. It seems anytime you want to ask for

something like an IEP you have to have and ARD meeting. I forget what

ARD stands for. I just know you cant just do it tomorrow. They want

the counselor, principal and teacher (and ds10 had 2 because they

team teach at grade 4/5) all to attend so it takes a week or more to

coordinate.

Nothing is easy is it. But we will trudge forward.

Jimmer's MRI is scheduled for Sept 30 with a follow up with the rhuem

on Oct 7. I am assuming that is when he will be prescribed meds. So

far his bloodwork wasnt too bad. Enzymes for muscle and such were

good. only the antigens? were still elevated. I'm still haveing

trouble remembering the jargon. I'm sure I'll learn.

Thanks everyone,

a

[Guest guest]

If I am not mistaken,I remember something similar happening with the

threats of the court with one of the kids on the list - . Her mom

is Robbin. I know she is now home schooled. So people here definitely

know what you are talking about. Good that you are familiar with the IEP

so you know what that entails. It is hard when they are young and just

trying to get used to school to have this disease to also deal with. I

know what you mean about the jargon. After almost 4 years into this

(yikes! I had forgotten it has been that long!)I am still learning. Not

too long ago someone posted info about blood work and I saved that so I

will know what it all is. This is all a learning process, which is why I

need this list. So much info here. Just so you know, there are booklets

available for free through the Arthritis Foundation www.arthiritis.org

that you can get to give to the teacher and school nurse. There is also

a childrens book out there (I can't think of the name) that perhaps you

could get the teacher to read to the kids? Just a thought. Good luck to

you, Michele (17,pauci & spondy)

Re: New to list-glad for any helpful info or

advice/Thanks-(long)

Thanks for your reply. Much of my frustration was that last Friday

the school counselor, just doing her job of course, called and

basically said that if I didnt have him back in school soon I would

be taken to court. This is a week after she gave me the info for

getting him put on the homebound program. So mostly I was ticked off

about that and didnt want to give in.

This morning I took him straight to the nurses office. The school has

a new nurse this year and I had not yet met her. Had her predecessor

still been there I think I would have already spoken with her on the

phone. She was great. Anyway we sat down and I quizzed her about what

she new about JRA. Although she didnt know much she was very

understanding and supportive. I let her know what I knew so far and

what was going on because she was totally unaware of the situation.

Even though I had been clear about what his needs would be the first

time I spoke to the counselor.

We took my son to class and got him settled in which was hard becuase

just as we got there half the class was lining up at the door to go

to computers. So my son was a bit overwhelmed. His teacher was great.

She let me come in (they usually dont want parents in the classroom

the first 6 weeks) and help. She gave him some really easy work to do

which helped his self confidence.

His classmates are really great and helpful. Of course they have lots

of questions. I need to sit down and figure out the best way to

explain JRA to 1st graders. He attends a Montessori school within our

public school district. In the beginning grades they do a lot of work

on the floor. So his classmates were really good at helping him walk

around and get up and down on the floor. Which I know is not

appealing to him but good for him.

I am familiar with IEP. Last year I was trying to get the school to

evaluate my older son for ADD. Which they never did. Which is why I'm

so negative about the counselor. It seems anytime you want to ask for

something like an IEP you have to have and ARD meeting. I forget what

ARD stands for. I just know you cant just do it tomorrow. They want

the counselor, principal and teacher (and ds10 had 2 because they

team teach at grade 4/5) all to attend so it takes a week or more to

coordinate.

Nothing is easy is it. But we will trudge forward.

Jimmer's MRI is scheduled for Sept 30 with a follow up with the rhuem

on Oct 7. I am assuming that is when he will be prescribed meds. So

far his bloodwork wasnt too bad. Enzymes for muscle and such were

good. only the antigens? were still elevated. I'm still haveing

trouble remembering the jargon. I'm sure I'll learn.

Thanks everyone,

a

[Guest guest]

a,

My kids go to a private Montessori school (wish it was public). I

know there is a lot of " floor " work. A suggestion I picked up at

the AJAO conference is to buy the class two bean bag chairs (one for

your child and one for the others to fight over). This may be

easier than getting up from the floor.

The class has " share " each day during " circle time " . What we did

was have my son share about his JRA, in very simplistic terms for

about 5 minutes (he was 7 at the time and pretty familiar with all

the kids, so he was comfortable doing this). I was there to help

him out and we talked to all the students about helping him if he

asked for anything.

I also gave each of his teachers, school principals, etc. the

pamphlet from the Arthritis Foundation called " When Your Student Has

Arthritis " . It is chock full of suggestions about things the

teachers and faculty can do to help your child. Especially in a

public system, it is their duty to do everything in their power to

help. I also met with each teacher one on one and discussed what

the special needs were, in our case, and made sure there was an open

line of communication. This may seem really obvious as I say it,

but don't let the school intimidate you. You are the one in charge.

I hope things are working out. It all takes time, as you probably

already know.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

-Stacia..

They provided Nick with a bean bag chair at school for cicle time

etc last year, it soon had to be removed as all the other kids

thought it was a great idea to keep diving on it!!!!!!!!! back to

the drawing board.

HUgs Helen and (7,systemic)

-- In , " staciar101 " <staciar@c...> wrote:

> a,

>

> My kids go to a private Montessori school (wish it was public). I

> know there is a lot of " floor " work. A suggestion I picked up at

> the AJAO conference is to buy the class two bean bag chairs (one

for

> your child and one for the others to fight over). This may be

> easier than getting up from the floor.

>

> The class has " share " each day during " circle time " . What we did

> was have my son share about his JRA, in very simplistic terms for

> about 5 minutes (he was 7 at the time and pretty familiar with all

> the kids, so he was comfortable doing this). I was there to help

> him out and we talked to all the students about helping him if he

> asked for anything.

>

> I also gave each of his teachers, school principals, etc. the

> pamphlet from the Arthritis Foundation called " When Your Student

Has

> Arthritis " . It is chock full of suggestions about things the

> teachers and faculty can do to help your child. Especially in a

> public system, it is their duty to do everything in their power to

> help. I also met with each teacher one on one and discussed what

> the special needs were, in our case, and made sure there was an

open

> line of communication. This may seem really obvious as I say it,

> but don't let the school intimidate you. You are the one in

charge.

>

> I hope things are working out. It all takes time, as you probably

> already know.

>

> Stacia and Hunter 8 systemic, iritis