Missing School

[Guest guest]

,

The worst part of school for me was PE. I obviusoly did NOT

participate and the other kids harassed me. To this day it still

think about that. They didn't understand why I never had to go to PE

b/c I looked fine. I acutally liked going to school. The 4th & 5th

grade were the hardest b/c that was when they were trying to figure

out what was wrong and playing with my medicine levels. Once that was

figured out I didn't miss as much school

I did go through mood swings, and a bit of depression. Not to mention

the added weight gain b/c of prednisone. I didn't really talk about

it at all with my parents but they did notice. I still go through

mood swings etc now at 26. I think the weight gain added to the

depression. But also my parents rarely asked how I was feeling. they

let me come to them when I wasn't feeling my best. They also let me

know I Could come and talk to them whenever I wanted to.

Please feel free to email me with other questions riotkat@...

a

> Hi a,

>

> I our case there is absolutely no concern regarding

> promoting to the next grade. I was just looking for a

> little tutoring help but with budget cuts etc..I think

> the school admin is going to hold firm on only

> providing one within their guidelines of the 10

> consequtive missed days.

>

> The guidance counselor might have some other options

> otherwise I am just going to try and chill out and not

> worry if everything gets done by the next school day.

>

> I guess in my heart I think Aundrea would probably

> hate home schooling full time and I doubt that it

> would be great for our relationship. Probably just

> not working full time and being able to slow down and

> get her work done with her during her best times of

> day would be helpful. She ususally feels better

> during the day-time hours which is when I try to work

> and by night when we do homework she is feeling pretty

> miserable.

>

> You mentioned missing alot of school in your 4th and

> 5th grade year. Did you do alot better after that?

>

> Did you ever speak with a couneselor about your

> illness or suffer from any depression/mood swings as a

> child. Do you have any advice on how I can better

> help Aundrea in dealing with this disease. Was there

> anything that was particularly challenging or

> distressing for you?

>

> I am making the change in not asking Aundrea

> repeatedly about how she is feeling each day and

> letting her bring it up to me or just observing her.

> Hopefully that will help some.

>

> I appreciate your perspective and any suggestions that

> you might offer that would be helpful.

>

> Thanks sonia

>

[Guest guest]

I was diagnosed at five years old, and they say kids are cruel well I found

adults were cruel (administration)..I was just talking to my mom about this last

night ironically. I am thirty nine now, and we were both saying how we wished I

had been home schooled, as it would have made it so much easier on me. I would

not be playing catch up all the time. My parents were unable to afford private

tutors, and because juvenile arthritis was even less known back then. I was not

eligible for public tutoring as a need. They had to list me as having a learning

disability to provide me tutoring in elementary even though I did not have one.

I wish I could have been home schooled, and if I had it to do over we would

have. Best of luck.

>

> My five year old, nie, was diagnosed with jra when he was 14 months old.

His symptoms are under control with a shot of Enbrel once a week. But he started

kindergarten this year and has been sick a lot already. Every time he's sick

with a fever, we miss a shot. We seem to be on a two-week cycle of shot, sick,

shot, sick. I feel like I have to choose joint pain or the flu for him. I don't

know anyone else dealing with jra in a young child and our doctor isn't much

help. Should I be homeschooling him so he stays away from school germs? Or will

he get stronger? I don't know what to do.

>

[Guest guest]

IMHO, I think it would be a good idea to HS him. In most states, school isn't

legally required (for documentation more than anything) until 7yo. So, say you

homeschool him, Kindergarten in the easiest grade to HS ever, you probably don't

even have to keep records. This just makes it easier on you.

I have always wondered how the kids do here, being immunosuppressed medically

and then going to school. Elementary is the worst for germs. I know it is hard

to see your little guy in pain. And, I do think, that especially with this flu

season, you will want to keep him at home. You can always schedule a few well

planned playdates with some of his friends when he is well.

I am a little biased to HSing, but it amazes me that this type of thing doesn't

happen to all the kids here. Kymberli

>

> My five year old, nie, was diagnosed with jra when he was 14 months old.

His symptoms are under control with a shot of Enbrel once a week. But he started

kindergarten this year and has been sick a lot already. Every time he's sick

with a fever, we miss a shot. We seem to be on a two-week cycle of shot, sick,

shot, sick. I feel like I have to choose joint pain or the flu for him. I don't

know anyone else dealing with jra in a young child and our doctor isn't much

help. Should I be homeschooling him so he stays away from school germs? Or will

he get stronger? I don't know what to do.

>

[Guest guest]

I use to homeschool and now I work full time as a teacher. It is a problem

with my jra kid because I can't go back financially. And now that I see how

she is maturing and growing in school, I don't think I would go back if I

could. Homeschooling is a LOT of work. Of course I was doing 4 kids who

were older than kindergarten. It's a big commitment and a personal choice,

but I will pray that you make the right decision.

Also, I would keep in mind that the first few months of school are the

worst, when kids are exposed to everything that they were not all summer.

It should get better. If not, as someone else said, if you keep him home,

the school is obligated to do homebound with him. Good luck.

Amy and Lucy (7, poly)

On Tue, Oct 20, 2009 at 8:04 AM, fwlady65401 <fwlady65401@...> wrote:

>

>

> IMHO, I think it would be a good idea to HS him. In most states, school

> isn't legally required (for documentation more than anything) until 7yo. So,

> say you homeschool him, Kindergarten in the easiest grade to HS ever, you

> probably don't even have to keep records. This just makes it easier on you.

>

> I have always wondered how the kids do here, being immunosuppressed

> medically and then going to school. Elementary is the worst for germs. I

> know it is hard to see your little guy in pain. And, I do think, that

> especially with this flu season, you will want to keep him at home. You can

> always schedule a few well planned playdates with some of his friends when

> he is well.

>

> I am a little biased to HSing, but it amazes me that this type of thing

> doesn't happen to all the kids here. Kymberli

>

>

> >

> > My five year old, nie, was diagnosed with jra when he was 14 months

> old. His symptoms are under control with a shot of Enbrel once a week. But

> he started kindergarten this year and has been sick a lot already. Every

> time he's sick with a fever, we miss a shot. We seem to be on a two-week

> cycle of shot, sick, shot, sick. I feel like I have to choose joint pain or

> the flu for him. I don't know anyone else dealing with jra in a young child

> and our doctor isn't much help. Should I be homeschooling him so he stays

> away from school germs? Or will he get stronger? I don't know what to do.

> >

>

>

>

[Guest guest]

First of all, thank you, thank you, thank you to everyone who replied. Just

knowing that there is someone (or several someones) out there who understands is

a huge comfort to me. nie is in a charter school in Arizona so to get a 504

we'd have to switch to a public school. I love his school and his nine-year-old

sister is there. I really want to keep him there. He loves it and is very

social. So, after reading and thinking, I will talk with the principal and see

what we can arrange. I work from home so I could, technically speaking, handle

home school for kindergarten. But not higher grades. We'll try to stick it out

at school. I totally agree that I don't want him to live in a bubble (literally

or figuratively) so I've just got to be vigilant about where we go and when. He

carries a little bottle of Purell in his pocket and he's good about using it.

Hopefully, in a few years, things will get better. Thank you all,

Abbie

>

>

> I agree with Michele - this could be the exposure when immunities have not

been built up before. Many of my friends who have children without chronic

illness who weren't in a daycare settting before kindergarden found themselves

with a frequently sick child in the first couple of years. My son was in

daycare from the time he was 3 months old - though he started out in a " in-home "

daycare set up, with few children and little change - he did pick up some

illnesses - but stayed pretty healthy - though he did develop his first

auto-immune disorder at age 2, and experienced flares when his immune system was

triggered by various exposures - though they were not frequent. When he was

three, he moved into a daycare/preschool center and we experienced an increase

in colds, etc - and as a result more frequent flares of his MCD. He was three

when the JRA started - so was a couple of years into it when he started

kindergarden - at 4, (almost 5) in the public school system. I wasn't in a

position to go any other route, though I knew that anything that triggered the

immune system could (and would - in those early years) trigger a flare. I did

get him signed up for at home tutoring, provided by the school system when he

was too ill to attend school - though we never were able to take advantage of

that because although he would miss a week at a time - then maybe another week

after attending a couple of days, he never missed the total subsequent days

required in land (at least as it was set up at that time) - to initiate the

at home tutoring. Most of the time, when he was out of school, he was in the

hospital with his systemic flares, and not at home anyway - if he was missing

more than a day or two.The years from K through 2nd Grade were the worst - with

the most absences due to hospitalization and flares - but we managed. He was

able to make up the work - and took it all very seriously - once making me stop

by the school to pick up his assignments on the way back to the hospital to be

admitted when the Doc saw his lab results and called for us to come back.

>

>

>

> In spite of being immune-compromised by the meds - has had few

illnesses - or they would be so mild for whatever the reason, that if they

didn't trigger a flare, he would be doing great. I don't know why exactly -

though I have stressed the frequent hand washing, and not sharing pencils, etc

at school - though he would often share his pencils - I would tell him to tell

the kid to just keep it (and found myself buying a lot of pencils!) He has

always had a Disease Alert notification that required I be notified if a list of

illnesses developed among those in his classes & the school worked closely with

me.

>

>

>

> Overall, I think you need to follow your gut-instinct and do what you feel is

best for your child. I personally have felt that I need to be ever-vigilant, and

pay attention to what is going on (we didn't see close family friends for a

period of 3 months when Chicken Pox had 3 breakouts in their school) and

currently don't take to places where the flu-mist is being given, as it

is a live vaccine and he shouldn't be exposed to it (when he was still in

elementary school, I kept him home on the flu mist days & didn't allow him to go

to his friend's house when they had received it).

>

>

>

> I made the decision at some point, that the only way to really prevent him

from being exposed to illness would be if I completely isolated ourselves and

moved to a mountain somewhere and had no contact with anyone - so decided that

his quality of life was more important, that I could be reasonable and limit the

risk without putting him in a bubble. Home schooling is the right choice for

many, and many people have very good reasons to choose that which have nothing

to do with chronic illness - but my personal opinion is that if you go out in

public at all - with or without your child, you come into contact with all types

of germs, bacteria and sick people, so it may limit the exposure, it won't

eliminate it.

>

>

>

> With all of that said, it does amaze me the way that folks drag their sick

children everywhere - just this week I was at the grocery store and the lady in

front of me - with a child he was playing with the credit card signature " pen " ,

touching everything in site commented that the boy was " too sick " and with a

fever so he couldn't go to school that day - and the Coaches Mom last week who

tells me her son - who was present to play the game - had a fever for two days,

including that morning. wasn't at the grocery store with me - but often

is, and at the ballgame I walked over and had him move to the oposite end of the

dugout and said a little prayer.

>

>

>

> I wish you and the son the best.

>

> Val

>

> Rob's Mom (12,systemic)

>

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>

> Is this your first child to go to school? I can tell you from experience that

when my first one started, after being home and not really exposed, she got sick

often. Then she would bring it home to the two others I had at home. So they had

more immunities built up before they started (my second child, is the one

with allergies, asthma and arthritis) so they did not get sick quite as often

once they started. was often sick because of his other issues. Your child

could just be experiencing the normal new exposures, if he was not in a day care

or school situation before.

> Honestly, homeschooling is your choice. Your son is young, and working with

him to keep up is a bit easier. If you are at a public school, you can get a 504

plan in place. My kids went to private school and I was able to just work out

issues with them informally.

> In my experience, did fine overall at school. He was older when he

developed his arthritis, however. When he started on MTX he was actually less

sick with colds and viruses than he had been before he started it. Even his

asthma settled down. I am not sure why. His school issues were more pain and

being tired from the arthritis.

> It is too bad your dr is not being much help. When all else fails, follow your

instincts and determine what you think would work best for your child.

> Michele ( 22, spondy)

>

> ________________________________

> From: [mailto: ] On Behalf Of

abbie_matt

> Sent: Monday, October 19, 2009 7:04 PM

>

> Subject: Missing School

>

> My five year old, nie, was diagnosed with jra when he was 14 months old.

His symptoms are under control with a shot of Enbrel once a week. But he started

kindergarten this year and has been sick a lot already. Every time he's sick

with a fever, we miss a shot. We seem to be on a two-week cycle of shot, sick,

shot, sick. I feel like I have to choose joint pain or the flu for him. I don't

know anyone else dealing with jra in a young child and our doctor isn't much

help. Should I be homeschooling him so he stays away from school germs? Or will

he get stronger? I don't know what to do.

>

>