Lori

[Guest guest]

Hi Lori,

Your posts remind me of when was in his previous program (private program

for children w/DS and sensory issues) where we discovered that the teacher was

ignoring him, yelling at him (I saw her do this when I happened to peer inside

of the classroom one day) because he threw a spoon and the day before she had

called 911 because 's finger got caught in the door for a millisecond (the

door was not slammed) and left a little mark. The sensory trauma that our son

endured as a result of the ambulance ride, bells and whistles, plus this yelling

drama " sealed the deal " and we pulled him out of this program. How ridiculous

and a nightmare for our son.....for the first 3+ years he had great staff at

this school and was doing well. Unfortunately, the staff deferred to this

teacher who had been there for years, why, we have absolutely no idea. She

hadn't taught children with DS-autism and didn't want to try., even though she

assured us that she was committed to helping at the beginning of the

school year- a real phony!

I will be praying for you and Isaac that resolution will be found.....thank God

it appears that he is healthy based on what you have described, but it's prudent

to double-check just to be sure. If school is the culprit, may you have your

answer ASAP.

Hugs,

Mom to , 7 yrs. old DS/PDD-NOS

Colon Cancer Survivor, 3/19/10

To:

From: uccpowell@...

Date: Thu, 2 Dec 2010 20:18:31 -0600

Subject: RE: Re: I can't get my kid well!

If he is not well by Monday they will do another blood test. His first

blood test showed an infection but I couldn't get the nurse to tell me the

actual numbers. At the time, she couldn't pull up that screen. If there is

another blood test that is " bad " then I think they will begin to think

beyond just a general infection. I think he is right that something is

wrong and even though he " knows " things, he really doesn't know the

multitude of what could be wrong thus he picked cancer. But we will have to

start ruling out stuff soon.

I give a lot of credit to all you parents that have lived through operations

and a plethora of health problems. We have coasted along with just food

allergies and it has made me healthier so I have looked at that as a

blessing in disguise. I don't know how you all do it and work and stay sane

- other than that is the only choice there is. But kudos to all of you that

do.

The frustrating part is that Isaac is feeling so poorly he is really sassy -

he has given up calling people the a word and has substituted dummy but

there are three women teachers who absolutely do not tolerate this or accept

that it is because he isn't feeling well. They create all kinds of drama so

he says it again. I need him to get well before he completely alienates the

school. Yes, they should know better but I'm not interested in winning the

argument, I'm interested in Isaac having a successful 7th grade year.

He lasted an hour today and a few hours the other day. That is all the

schooling he has been able to get in this week. But at home he seems well

enough to go to school, not perfect but no fever, a slightly stuffy nose,

not anything else except the way he looks. So I send him and then he looks

even worse and acts terrible and I have to go get him. Today he said,

" school makes my inside guts hurt. " But he happily ate and played computer

games at home.

What if he's now allergic to something at school?

Sorry I'm worried and rambling.

Thanks for all the suggestions.

Lori

Mom to Isaac 13 and Tony 12

_____

From: [mailto: ] On Behalf

Of Cookson

Sent: Thursday, December 02, 2010 7:38 PM

To:

Subject: Re: Re: I can't get my kid well!

Lori, I think it's scary that he's asking about cancer. Have the Dr's done

any blood work that would rule it out? I'm sure you're right about him not

having anything else to relate to the way he's feeling.

I sure hope he feels better soon!!!

Sent from my iPhone

On Dec 2, 2010, at 1:15 PM, " Lori " <uccpowell@...

<mailto:uccpowell%40tds.net> > wrote:

> Isaac is rarely sick - that's why I gave a bit of a history in the first

> post. This is a kid who is never sick, does not mouth anything, his being

> sick is not typical. Not by a long shot. I think the relevance of him

> asking us if he has cancer and is going to die is simply that he knows he

is

> not well and has no basis for understanding this.

>

> When Tony was first brought home he got a sore throat within days

(probably

> a new environment, he was never taken out of his foster home for outings)

> and he wouldn't speak to me. He was so mad because he thought I caused his

> sort throat. He would sign to Isaac that he wanted juice or food and Isaac

> would tell me. It was very cute. Now even Tony but certainly Isaac knows

> what it means to be sick and this time around, it is very confusing.

>

> We took out the carpeting in our house in May and my husband and I put in

a

> recycled oak floor. Is there a toxin somewhere that only became apparent

> when we had to close up the house for winter?

>

> This is the mystery.

>

> Lori

>

> _____

>

> From: <mailto:%40yahoogroups.com>

[mailto: <mailto:%40yahoogroups.com> ] On

Behalf

> Of agirlnamedsuess21

> Sent: Thursday, December 02, 2010 11:30 AM

> To: <mailto:%40yahoogroups.com>

> Subject: Re: I can't get my kid well!

>

> Doubtful it is cancer. You can put his mind at ease with that.

> children with autism (and especially with Down syndrome AND autism) have

> immune system problems. If your child is one that does not, then consider

> yourself VERY lucky.

> This would be a great opportunity to teach great handwashing skills (to

the

> point of being OCD about it) and good germ control measures. Most kids do

> not know these things.

> For instance, we sneeze or cough, when possible, into our elbows. We wash,

> wash, wash our hands before we eat, after we come inside, etc...

> We change clothes when we come in from some place (and the clothes go to

the

> laundry room right away and get washed). We take hand gel on the run with

> us...everywhere we go. We do NOT drink out of water fountains at

> all...EVER...if you only follow two things, it should be frequent

> handwashing and no water fountains. Also, we do not drink after each

other;

> I am very adamant about this one. And we constantly work on keeping hands

> out of mouths (a difficult one, and you always hear me saying " get your

> hands out of your mouth " , as he is a hand chewer.)

> I absolutely became neurotic about germs and it has helped tremendously to

> keep my son well.

> And one other thing, it is very different to be exposed to your own

family's

> germs (no need to keep an impeccably clean house) than to be exposed to

> other peoples germs. The way the doctor explained it to us was that our

> germs are in a controlled environment and everyone else's are not. Other's

> are exposed to innumerable amount of germs by the people they come into

> contact with everyday and those people and so on. When you limit the

> exposure and become OCD about germs in your own household (as far as

> handwashing and bringing outside germs in), then you will have a better

hold

> on keeping your child well (until he can keep his ownself well *hopefully*

> when older and the immune system is more mature.)

>

>

>

>

> >

> > From: Lori <uccpowell@... <mailto:uccpowell%40tds.net> >

> > Subject: I can't get my kid well!

> > To: <mailto:%40yahoogroups.com>

<mailto:%40yahoogroups.com>

> <mailto:%40yahoogroups.com>

> > Date: Tuesday, November 30, 2010, 12:48 PM

> >

> >

> >

> > Okay, advice on something seemingly ordinary. Isaac is not usually sick.

> >

> > He had a bad strep infection once when he was 5, had the red rash and

> >

> > everything. Since then a few sinus infections. not many. But this fall I

> >

> > can't get him well. The doctor has tested him for mono, strep and a UTI.

> >

> > His blood work shows some kind of infection but we can't find it. He is

> >

> > home at least once a week. The whole family got stuffy noses over

> >

> > Thanksgiving but we all had lots of vitamin C and went about our

business

> >

> > yesterday. I sent Isaac to school and he had big problems (he wanted his

> >

> > own box of tissues and the teacher would not let him have them so he

> called

> >

> > the teacher an asshole). I am keeping him home today. Tried to get the

> >

> > school to see that his reactions was extreme and not typically Isaac but

> of

> >

> > course there will be big consequences for this. So here the rest of us

are

> >

> > getting over our colds and Isaac has a fever. The strep test was done 4

> >

> > days ago so I can't take him back yet. But he has had a fever (on and

off)

> >

> > and been out of sorts since September. The doctor said to think mono

even

> >

> > though he did not test positive for mono. She said that some kids just

get

> >

> > viral infections that take as long as mono. However, we are now well

past

> >

> > the 6 week mark for a mono like illness.

> >

> > Anyone have a magic pill?

> >

> > Lori

> >

> > Mom to Isaac 13, and Tony 11

> >

> >