update

March 29, 2002

Hi Peg: I am new to trying to be diagnosed but not new to the Fibro, as I think

I have had it for probably 30 years, but it has gotten really bad in the last

couple. In the middle of trying to be diagnosed now. My first doctor many years

ago told me it was due to my age (about 27 at the time) and my weight (about 170

at the time I think). I went to him till about 4 years ago when I moved quite a

distance away. The first doctor I found here in Oshawa told me that people

should stop looking things up on the net as anyone could convince themselves

they had anything. I was going to quit going to him but then he quit his

practice and left town so took that decision out of my hands anyway. Now this

new doctor, I mentioned all this pain to him and he said maybe a virus, how long

have I had it. I told him about 20 years at least and the worst of it for about

2 years. His jaw dropped and he said why didn't you go to a doctor, I told him I

had and was called a liar and a hypochondriac. He told me right off that he

thought it was fibro but wanted to rule everything else out first. So a couple

of days ago he sent me for bloodwork, 8 vials of blood taken and 19 tests,

including Epstein-Barr. Once he eliminates everything else, he will send me to

the fibro specialist. Finally something being done. He gave me something to help

me sleep and some pain medication. First time I have received any pain relief in

years. As far as my job goes, once I get diagnosed I think they will accomodate

me. Problem is they may request me to go part time, which is guaranteed minimum

of only 15 hours. Full time is guaranteed minimum of 30 which is about what I

want for now. I am working 40 at the moment and told my team leader I was having

a hard time with that many hours. Can't really ask them to accomodate the fibro

as I have not got a sure diagnosis yet till all my testing is done. Once I see

the fibro specialist and if he agrees, then I can get the doctor's note to

lessen my hours. If necessary, maybe my job will lessen my hours before then.

Just waiting for a shift bid to come in and it is overdue by weeks. Till then I

was just assigned this 40 hour shift, but have requested their 32 hour shift in

the bid. Just working till our mortgage is paid, about 5 more years, then can

retire with hubby's blessing. Hope I can hang on that long, but I told DH if

they give me an evening shift I will have to look for another job. Have been at

this job for 3 years, was answering phones for US Embassy in Canada, just a

couple of months ago switched departments and answer phones for General Motors

now. It would be scary to try for disability as you have to quit work first with

no surety that you will get the disability, right?

Ellie

Update

Hi Everyone,

I've been very busy last week. Took advice (thanks all)applied for assistance,

have second appt. tomorrow. Went to Social Security for my son and the worker

asked why I was out on Short term and advsd FM. She said she heard that it was a

very painful disease but also heard that it was hard to prove DX. I didn't have

the energy to debate, had waited 2 1/2 hours for appt. I was surprised she even

new waht it was!

I have been in some pretty debilitating pain these last 3 weeks. Tried to get

appt w/Primary Care Physician who said she will not treat me for the FM have to

see Neuro. Called Neuro who ? if trigger point injections helped, advsd no. He

advsd me to go back to my PCP and have her refer me to a Rhuematologist. He told

me to triple my medications. So much for professional help. I made an appt with

a doc who speacializes in FM, earliest appt. is May 1.Called PCP back to advise

of the wonderful help nuero gave, she wasn't in. Needless to say I spent a

couple of days in bed,crying and feeling sorry for myself. I'm back to square

one. This is the most frustrating part of FM. Being jerked around by doctors who

can't admit they dont know. I politely told the neuro that I completely

understand how people end up with depression.

Last couple of days had lots of time to reflect on future. Made some serious

life decisions. I'm coming to terms with my limitations.Not happy to have them.

How did all of you decide what to do in terms of career changes, work etc. I'm

having an extremly difficult time dealing with the pain. You've all been so

supportive and I appreciate your imput. Never thought I would seek advice from

people I've never met but you have the best solutions.Will not take up any more

space, sorry if post is too long and me me meish.

Hope all are well and PAIN FREE. Peg

March 31, 2002

Ellie wrote:

> It would be scary to try for disability as you have to quit work

first > with no surety that you will get the disability, right?

Yes, and it can take a couple of years to get it. If your mortgage is

getting close to being paid off, that probably means you're older,

right? If you get to 50 (at least in the US), it's much easier to get

since they figure you can't retrain as easily. Also keep good notes on

how your symptoms affect your life and make sure your doctor is behind

you.

Darcy

March 31, 2002

Good advice, Darcy. I am 52 and it will be about 5 years or so before the

mortgage is paid off. Not sure if I can hang on that long, but will certainly

try. If I drop to part time, wonder if that will affect my chances to get

disability when I can't work anymore. Ellie

Re: Update

Ellie wrote:

> It would be scary to try for disability as you have to quit work

first > with no surety that you will get the disability, right?

Yes, and it can take a couple of years to get it. If your mortgage is

getting close to being paid off, that probably means you're older,

right? If you get to 50 (at least in the US), it's much easier to get

since they figure you can't retrain as easily. Also keep good notes on

how your symptoms affect your life and make sure your doctor is behind

you.

Darcy

March 31, 2002

Ellie wrote:

>

> Good advice, Darcy. I am 52 and it will be about 5 years or so before the

mortgage is paid off. Not sure if I can hang on that long, but will certainly

try. If I drop to part time, wonder if that will affect my chances > to get

disability when I can't work anymore.

Yup, I think they go by the last five years, so if you work part time or

don't work at all, that counts too. It's not been quite a year yet

since I quit, but since my main problem is fatigue, I don't know if I

would get it. Also, I don't know if I have the energy to try. Still

trying to make up my mind, and since I'm only 39, age is against me.

Darcy

September 7, 2002

Caroline,

Thanks so much for posting. I have been wondering about you these last

couple of days. What a wonderful time in your life.

I don't have any scientific suggestions, but I do know what worked with my

second child. I had to JUMP over a huge heater in the floor that was on full

blast and I was barefoot ! This was a huge jump and caused a body jarring

thump at the landing. Water broke on the spot, with force.

You will continue to be in my prayers,

-Pam L -

September 25, 2002

Hi ,

Thanks for the update. I'll bet you're just tickled by that ultrasound. I'm

happy to hear that all is going well with the babies and that you're being

closely monitored by your doctors, including Tom. Sounds like it's time to

put your feet up and relax. Take care, elaine

September 25, 2002

Hi ,

Thanks for the update. I'll bet you're just tickled by that ultrasound. I'm

happy to hear that all is going well with the babies and that you're being

closely monitored by your doctors, including Tom. Sounds like it's time to

put your feet up and relax. Take care, elaine

September 25, 2002

Hi ,

Thanks for the update. I'll bet you're just tickled by that ultrasound. I'm

happy to hear that all is going well with the babies and that you're being

closely monitored by your doctors, including Tom. Sounds like it's time to

put your feet up and relax. Take care, elaine

September 26, 2002

Hi ,

glad to hear the babies are fine. take care of yourself and the babies.

Hugs and Prayers, debbie

September 26, 2002

Hi ,

glad to hear the babies are fine. take care of yourself and the babies.

Hugs and Prayers, debbie

September 26, 2002

Hi ,

glad to hear the babies are fine. take care of yourself and the babies.

Hugs and Prayers, debbie

December 11, 2002

Debby,

Gee, the stuff you have to deal with is just awful! Some rewards for helping

the guy (principal) find his sea legs last year, eh?

On a positive note - if your ex thought the ENT appt. was a total waste of time,

maybe he'll quit showing up for these appointments unannounced! (We can always

hope....)

Hang in there. I don't know how you do it - I'd be in the loony bin by now!

in Alaska (which FINALLY got snow yesterday!)

>

> Subject: update

>

> Hi all

>

> Well you will probably recall my concerns with the principal and his *strange*

need to treat Adam " like every other kid " (ie. " we don't make allowances here,

ALL kids are to be the same " ). Today he even went so far as to say " the current

trend is to have total integration for ALL kids " --same time we had a study by

our government completed today that thinks $ 25 million (do I have that right

Gail P.?) MORE is needed in Special Education.........but I digress).

>

> Well he managed to suspend Adam on Thursday. And let me tell you that just

added fuel to the fire with Adam's father as well!!

>

> So what did Adam do? He was up in the far north field of the yard, which has

another school beside it. And, as Adam tells it, he had to go " pee " . He said he

knew he wouldn't make it back to the school in time, so he whipped out his

" apparatus " and peed against the other school wall. (later I found out his

father had gotten quite angry at him for, while peeing against a TREE, Adam had

splash back and wet his pants. Dad says " no boys EVER wet their pants or they

are BABIES, and he goes on and on " .)

>

> Well I allowed the suspension hoping that the principal would be pleased he

finally " got " it. Alas, he tells me he wants a " re entry meeting " to find out

(with the social worker) why Adam did it (HELLO? he had to go!!!).

Anyway........I got mad, accused him of being 'out to get me', and then asked

why the child who kicked a teacher to the point she was off for a few days, then

pulled his pants down so the grade 2 class could " see my penis " and then told

the odd teacher to F-off; and he's either not suspended, or suspended for a day

WITH NO re entry meeting ( the kid is off on suspension today for 4

days.....AGAIN......apparently he got into the library and ripped a bunch of

books to shreds....he's in grade 3......no re entry meeting for him).

>

> I was nuts. What worked in my favour was X husband called principal behind my

back and went so crazy (he needs and MUST scrub the wall to learn his lesson and

on and on,,,,,,then I mentioned to principal I am returning to court to stop X

husband harassment......and well......he's shaking now)

>

> OK I hope you are still reading. Because this is the second news. Went to see

the plastic surgeon and speech therapist yesterday for Adam and the

hypernasality etc. etc. Here's what I found out:

>

> 1. He has a terrible cold (well I KNEW that =) but he was put on a computer

that measures the amount of air that comes out of his nose and mouth on each

sound. He scored in the normal range (yeh he has a cold.......but they worked

hard to convince me that was not an issue).

> 2. His speech is difficult to understand because he talks to fast. End of

that. Then speech therapist shows me a pretty wall hanging that says " wait your

turn " ; " speak slowly " ; " speak clearly " and all such niceties and says 'Adam

should do that' (like I haven't tried a million times!!)

> 3. OK on to see plastic surgeon (to make the day EVEN BETTER; me with my

partial foot paralysis from the sciatic problems....walking from one end of Sick

Kids to the other and back again--Adam couldn't believe it...I was trailing HIM,

normally I wail through that place so fast, he's sprinting to keep up with me).

EVEN BETTER THAN THAT!!!! I get the wonderful surprise (oh joy!!) of Adam's

father unexpectedly showing up (to deny any surgery) and we had to sit, the 3 of

us, in a little room for an hour and a half to wait!!!!!! (ugh, he documented

everything I said and did with Adam the whole time).

> 4. OK doctor comes in. Looks at palate, notes the cold, the nasal is within

normal range.....and says he's fine.

> 5. What about high pitch voice? Well yes it is, I have a colleague who is

experimenting with voice therapy I'll mention Adam to him. (OK so that's that)>

> 6. What about the palate? (oh from my flash light it looks fine).

>

> Now here's the interesting thing. He told me " under NO circumstances do I ever

let anyone convince me to have Adam's annoids (sp?) removed "

> Why? Well there is *some* hypernasality (yeh even with the cold!!!) and if

anyone was ever to remove the annoids, then it would be major air flow through

there.

>

> Second.......he wants to see Adam in a year as the annoids shrink as one gets

older and that may make the whole thing worth a surgery then.

>

> Adam's dad walks out of the office with a good bye to Adam and his message to

me " what a waste of time " . (yeh OK.....I just thought it **might** be a good

idea to have that checked all out).

>

> So there you have it. Some good info in there for you all to file away

somewhere for future reference.

>

> Now, January is the endo. check up and March is the sleep study!!!!!

>

> Debby

>

.....................................

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January 22, 2003

Judith,

That's great news. Glad to hear 's feeling better. The weight

and growth sense the tube sounds really good to me. I love hearing

the stories about your twins. It gives me sooooo much hope.

Just curios...what is " EI and CPSE " ?

le mom to,

ShyeLynn 8, Brock 6, Coby (RSS) & Carlee 3 months

> Well, we saw Dr H yesterday for a " regular " every other month

> appointment. The time we wait for her to see us is actually

getting

> worse, not better. We had a 1 pm appointment and she didn't see us

> until 4:30. was so exhausted he slept the whole trip home.

>

> is up to 9.46 kg (about 20 pounds 13 ounces). While he only

> gained 9 ounces since his last visit 2 months ago, we expected this

> as he was sick from Thanksgiving to after Christmas with a single

ear

> infection, a double ear infection, a viral infection and a broncial

> cough that eventually required a nebulizer. Due to all the

coughing

> we had to reduce his formula ( is tube and oral fed) and he

> wouldn't eat by mouth at all. Now that he is healthy, he is eating

> again so we expect better in the future.

>

> He also grew again. He is up to 80 cm (almost 31 1/2 inches).

Since

> we did the feeding tube in June, he has gained 6 pounds and grew 3

> 1/2 inches.

>

> In between visits with Dr H was scheduled for a gastric

> emptying study (she is concerned about his pyloriplasty) which we

had

> to cancel due to illness. Unbelievably enough, she wasn't upset

that

> we hadn't rescheduled and understood that this was just going to

have

> to wait until after April 15 (yes, you guessed it, i'm an

> accountant). Also, she had referred to an ENT (he fell

asleep

> during his previous appointment and she heard him snoring). The

ENT

> has us due a sleep apnea test and we just received the results

> yesterday morning. Basicly, the report said - we didn't get enough

> information, please do it again. So, today we will call the ENT

and

> talk about that, also the hearing test that the ENT wanted to do.

>

> Anyway, what an exhausting day. At least we only brought and

> sent his twin sister to school. The thought of being there forever

> with both children is daunting.

>

> We have just started the paperwork to transition from EI to CPSE

(for

> both children). It should be a lot of fun taking on the school

> district - when they heard about they starting talking about

> sending him out of district for elementary school - I think they

are

> jumping the gun a little bit, he's only just turning 3.

>

> Judith, Steve, (RSS) and (non RSS) turning 3 on 2/4

January 22, 2003

EI is early intervention. It is a problem federally funded to supply

therapy to children from birth through age three who are behind in

various areas of development. They will send therapists to the

house, or you can send your children to a school based program. We

started off with home therapy and then switched to school based.

receives physical therapy, occupational therapy, speech

therapy, a feeding therapist and developmental. My daughter

(non RSS twin) receives pt, ot, speech and applied behavioral

therapy. Because the twins turn 3 in February, they will age out of

EI at the end of August. CPSE is continuing preschool special

education. IN order to qualify, you must have evaulations through

your school district who has to pay for all of the therapy.

If you have any other questions about this please post or email me.

Judith, Steve, (RSS) and (non RSS) almost 3 year old

twins

> > Well, we saw Dr H yesterday for a " regular " every other month

> > appointment. The time we wait for her to see us is actually

> getting

> > worse, not better. We had a 1 pm appointment and she didn't see

us

> > until 4:30. was so exhausted he slept the whole trip home.

> >

> > is up to 9.46 kg (about 20 pounds 13 ounces). While he

only

> > gained 9 ounces since his last visit 2 months ago, we expected

this

> > as he was sick from Thanksgiving to after Christmas with a single

> ear

> > infection, a double ear infection, a viral infection and a

broncial

> > cough that eventually required a nebulizer. Due to all the

> coughing

> > we had to reduce his formula ( is tube and oral fed) and he

> > wouldn't eat by mouth at all. Now that he is healthy, he is

eating

> > again so we expect better in the future.

> >

> > He also grew again. He is up to 80 cm (almost 31 1/2 inches).

> Since

> > we did the feeding tube in June, he has gained 6 pounds and grew

3

> > 1/2 inches.

> >

> > In between visits with Dr H was scheduled for a gastric

> > emptying study (she is concerned about his pyloriplasty) which we

> had

> > to cancel due to illness. Unbelievably enough, she wasn't upset

> that

> > we hadn't rescheduled and understood that this was just going to

> have

> > to wait until after April 15 (yes, you guessed it, i'm an

> > accountant). Also, she had referred to an ENT (he fell

> asleep

> > during his previous appointment and she heard him snoring). The

> ENT

> > has us due a sleep apnea test and we just received the results

> > yesterday morning. Basicly, the report said - we didn't get

enough

> > information, please do it again. So, today we will call the ENT

> and

> > talk about that, also the hearing test that the ENT wanted to do.

> >

> > Anyway, what an exhausting day. At least we only brought

and

> > sent his twin sister to school. The thought of being there

forever

> > with both children is daunting.

> >

> > We have just started the paperwork to transition from EI to CPSE

> (for

> > both children). It should be a lot of fun taking on the school

> > district - when they heard about they starting talking

about

> > sending him out of district for elementary school - I think they

> are

> > jumping the gun a little bit, he's only just turning 3.

> >

> > Judith, Steve, (RSS) and (non RSS) turning 3 on 2/4

January 22, 2003

Thanks, I understand exactly now. We have the same programs and coby

and Carlee are both recieving ot and pt once a week in our home now.

I don't expect to change to school based until they reach 3. Our EI

school based program is not that great. My older son was in speech

from 2 1/2 to 3 yrs. I wasn't happy with the facilities. I have a

day care in my home so the twins get the social interaction without

having to leave our home.

Thanks for the explaination.

le

> > > Well, we saw Dr H yesterday for a " regular " every other month

> > > appointment. The time we wait for her to see us is actually

> > getting

> > > worse, not better. We had a 1 pm appointment and she didn't

see

> us

> > > until 4:30. was so exhausted he slept the whole trip

home.

> > >

> > > is up to 9.46 kg (about 20 pounds 13 ounces). While he

> only

> > > gained 9 ounces since his last visit 2 months ago, we expected

> this

> > > as he was sick from Thanksgiving to after Christmas with a

single

> > ear

> > > infection, a double ear infection, a viral infection and a

> broncial

> > > cough that eventually required a nebulizer. Due to all the

> > coughing

> > > we had to reduce his formula ( is tube and oral fed) and

he

> > > wouldn't eat by mouth at all. Now that he is healthy, he is

> eating

> > > again so we expect better in the future.

> > >

> > > He also grew again. He is up to 80 cm (almost 31 1/2 inches).

> > Since

> > > we did the feeding tube in June, he has gained 6 pounds and

grew

> 3

> > > 1/2 inches.

> > >

> > > In between visits with Dr H was scheduled for a gastric

> > > emptying study (she is concerned about his pyloriplasty) which

we

> > had

> > > to cancel due to illness. Unbelievably enough, she wasn't

upset

> > that

> > > we hadn't rescheduled and understood that this was just going

to

> > have

> > > to wait until after April 15 (yes, you guessed it, i'm an

> > > accountant). Also, she had referred to an ENT (he fell

> > asleep

> > > during his previous appointment and she heard him snoring).

The

> > ENT

> > > has us due a sleep apnea test and we just received the results

> > > yesterday morning. Basicly, the report said - we didn't get

> enough

> > > information, please do it again. So, today we will call the

ENT

> > and

> > > talk about that, also the hearing test that the ENT wanted to

do.

> > >

> > > Anyway, what an exhausting day. At least we only brought

> and

> > > sent his twin sister to school. The thought of being there

> forever

> > > with both children is daunting.

> > >

> > > We have just started the paperwork to transition from EI to

CPSE

> > (for

> > > both children). It should be a lot of fun taking on the school

> > > district - when they heard about they starting talking

> about

> > > sending him out of district for elementary school - I think

they

> > are

> > > jumping the gun a little bit, he's only just turning 3.

> > >

> > > Judith, Steve, (RSS) and (non RSS) turning 3 on

2/4

January 22, 2003

Its good to hear that things are improving for him!!

Re: Update

> Judith,

>

> That's great news. Glad to hear 's feeling better. The weight

> and growth sense the tube sounds really good to me. I love hearing

> the stories about your twins. It gives me sooooo much hope.

>

> Just curios...what is " EI and CPSE " ?

>

> le mom to,

> ShyeLynn 8, Brock 6, Coby (RSS) & Carlee 3 months

>

> > Well, we saw Dr H yesterday for a " regular " every other month

> > appointment. The time we wait for her to see us is actually

> getting

> > worse, not better. We had a 1 pm appointment and she didn't see us

> > until 4:30. was so exhausted he slept the whole trip home.

> >

> > is up to 9.46 kg (about 20 pounds 13 ounces). While he only

> > gained 9 ounces since his last visit 2 months ago, we expected this

> > as he was sick from Thanksgiving to after Christmas with a single

> ear

> > infection, a double ear infection, a viral infection and a broncial

> > cough that eventually required a nebulizer. Due to all the

> coughing

> > we had to reduce his formula ( is tube and oral fed) and he

> > wouldn't eat by mouth at all. Now that he is healthy, he is eating

> > again so we expect better in the future.

> >

> > He also grew again. He is up to 80 cm (almost 31 1/2 inches).

> Since

> > we did the feeding tube in June, he has gained 6 pounds and grew 3

> > 1/2 inches.

> >

> > In between visits with Dr H was scheduled for a gastric

> > emptying study (she is concerned about his pyloriplasty) which we

> had

> > to cancel due to illness. Unbelievably enough, she wasn't upset

> that

> > we hadn't rescheduled and understood that this was just going to

> have

> > to wait until after April 15 (yes, you guessed it, i'm an

> > accountant). Also, she had referred to an ENT (he fell

> asleep

> > during his previous appointment and she heard him snoring). The

> ENT

> > has us due a sleep apnea test and we just received the results

> > yesterday morning. Basicly, the report said - we didn't get enough

> > information, please do it again. So, today we will call the ENT

> and

> > talk about that, also the hearing test that the ENT wanted to do.

> >

> > Anyway, what an exhausting day. At least we only brought and

> > sent his twin sister to school. The thought of being there forever

> > with both children is daunting.

> >

> > We have just started the paperwork to transition from EI to CPSE

> (for

> > both children). It should be a lot of fun taking on the school

> > district - when they heard about they starting talking about

> > sending him out of district for elementary school - I think they

> are

> > jumping the gun a little bit, he's only just turning 3.

> >

> > Judith, Steve, (RSS) and (non RSS) turning 3 on 2/4

>

January 22, 2003

Its good to hear that things are improving for him!!

Re: Update

> Judith,

>

> That's great news. Glad to hear 's feeling better. The weight

> and growth sense the tube sounds really good to me. I love hearing

> the stories about your twins. It gives me sooooo much hope.

>

> Just curios...what is " EI and CPSE " ?

>

> le mom to,

> ShyeLynn 8, Brock 6, Coby (RSS) & Carlee 3 months

>

> > Well, we saw Dr H yesterday for a " regular " every other month

> > appointment. The time we wait for her to see us is actually

> getting

> > worse, not better. We had a 1 pm appointment and she didn't see us

> > until 4:30. was so exhausted he slept the whole trip home.

> >

> > is up to 9.46 kg (about 20 pounds 13 ounces). While he only

> > gained 9 ounces since his last visit 2 months ago, we expected this

> > as he was sick from Thanksgiving to after Christmas with a single

> ear

> > infection, a double ear infection, a viral infection and a broncial

> > cough that eventually required a nebulizer. Due to all the

> coughing

> > we had to reduce his formula ( is tube and oral fed) and he

> > wouldn't eat by mouth at all. Now that he is healthy, he is eating

> > again so we expect better in the future.

> >

> > He also grew again. He is up to 80 cm (almost 31 1/2 inches).

> Since

> > we did the feeding tube in June, he has gained 6 pounds and grew 3

> > 1/2 inches.

> >

> > In between visits with Dr H was scheduled for a gastric

> > emptying study (she is concerned about his pyloriplasty) which we

> had

> > to cancel due to illness. Unbelievably enough, she wasn't upset

> that

> > we hadn't rescheduled and understood that this was just going to

> have

> > to wait until after April 15 (yes, you guessed it, i'm an

> > accountant). Also, she had referred to an ENT (he fell

> asleep

> > during his previous appointment and she heard him snoring). The

> ENT

> > has us due a sleep apnea test and we just received the results

> > yesterday morning. Basicly, the report said - we didn't get enough

> > information, please do it again. So, today we will call the ENT

> and

> > talk about that, also the hearing test that the ENT wanted to do.

> >

> > Anyway, what an exhausting day. At least we only brought and

> > sent his twin sister to school. The thought of being there forever

> > with both children is daunting.

> >

> > We have just started the paperwork to transition from EI to CPSE

> (for

> > both children). It should be a lot of fun taking on the school

> > district - when they heard about they starting talking about

> > sending him out of district for elementary school - I think they

> are

> > jumping the gun a little bit, he's only just turning 3.

> >

> > Judith, Steve, (RSS) and (non RSS) turning 3 on 2/4

>

January 22, 2003

Judith,

Great news about . I can't believe he even gained 9 ounces

after being sick for so long! He must look fantastic!

Now I can say, " Welcome to my world " when you talk about the

schooling issues. It can be such a hassle dealing with the school

districts. Why do they want to send out of district? Are his

learning needs that different from 's?

We have the opposite problem. We want our district to pay for Max

to attend a private high school. I cannot see my 4'10 " , younger

looking, immature son in a high school with 600 other kids. They

think they can solve the problem by giving him a full-time aid. We

think it will only hinder his progress and make him stand out more.

Besides, if they can pay for an aid, why can't they use the money to

pay for the private high school? It's always so hard.

I know that is only three, but it's great that they showed

their hand early on. You can plan ahead and put up a fight if you

want to. I'd be more concerned if they said nothing until the last

minute and you were caught by surprise.

Jodi

January 23, 2003

It is so great to hear about 's continued success with his

feeding tube. Please let us know when you post a new picture of

and , I would love to see how they've grown.

Regarding spec. ed. preschool just remember to fight, fight, fight

for what you believe in. Jake started sp.ed. preschool in September

and is doing remarkably well. His teacher says he is the star in the

class. He talks the most in the class and is eating much better

since since he is around his peers more often. Another wonderful

benefit is his confidence. After spending the first two and a half

years being the last to do everything in comparison to his same age

buddies (in a playgroup with no special needs children), he is now in

a setting where he is " advanced " . I think it is a good self esteem

builder and has given him a lot of confidence in all areas of his

life.

Once again, it is great to hear how well is doing.

Alison

> He really does look great. I just got some new picture of the

> children (I have to ask Steve to put one up) and was showing them

to

> people I know. Everyone said if you didn't know he had this, you

> would just think he was a little younger than Becca because of the

> size. Dr H is thrilled with how he looks - his checks have filled

> out etc etc.

>

> They are talking about sending him out of district because the

> elementary school is large. It currently holds K-4 and they are

> moving the 5th grade back from the middle school to the elementary

> school (they just finished adding 11 rooms onto the scholl). They

> are concerned that there will be too many kids for him.

>

> As for his learning needs, he is very bright (I think). He has

full

> letter recognition (both capital and small letters) and can count

> forwards and backwards to 20. I do think there may be some

behavior

> issues (he is still extremely repetitive in what he does - open and

> close the same toy for a very long time, put beads in the jar and

> take them out over and over...) but his EI program is working on

that

> and so are we.

>

> Meanwhile Becca isn't quite as advanced as with letters and

> numbers, but her play skills are much more advanced - she is

playing

> with dolls and much more imaginative.

>

> Anyway, it is way to early to worry about that now anyway. First

> things first, evaluations for CPSE.

>

> Good luck with your school district. I really hope you convince

them

> to pay for private school.

>

> Judith, Steve, (RSS) and (non RSS) almost 3 year old

> twins

January 23, 2003