Whew!

June 13, 2002

Thanks for all your hard work. I read each and every one of them. Very

interesting. Was this from a magazine? I was wondering because you said you

typed it all instead of " copy and paste. " That was truly a labor or love.

Thanks, Caroline

mhogg69@... wrote: Well folks, I hope you enjoyed all the recent posts

about medications/treatments for Arthritis. My hands are killing me from typing

it all but it looked so interesting and informative that I knew I had to share

it with all of you. So I really hope you found it as interesting and helpful as

I did.

Thanks everyone for your patients and hope I didn't clog up your email boxes!!

Better go and rest these little fingers today!!!!

Take care everyone,

Marilyn

mhogg69@...

June 14, 2002

Thank you both Caroline and Marcia,

I appreciate your emails very much. Yes it was from a magazine that I had

received through the Arthritis Society (Canada) as I recently attended one of

their research receptions at the Sick Children's Hospital. The seminar was more

in regards to where the funding (your dollars) goes to and who these Dr.'s are

that are receiving funding from the Arthritis Society and a look a the labs

where they do their research. It was quite interesting although I would be more

interested in a seminar/forum about current research, info on medications and

also info about each disease and how they work. They did speak about a disease

called " kawasaki " disease and it seemed very painful and they showed a film

slide of a child who suffered with this disease and it was so very sad indeed.

If I remember correctly, and as you know my memory is terrible, I believe this

disease had to do with inflammation in the blood vessels, etc.

Anyway, sorry for getting off topic here, once we arrived we were greeted with

an identification necklace and a gift/tote bag and in this bag were four

specialty teabags, a 'bic' pen that is thicker then the average pen for people

more so that suffer from arthritis and such and this magazine called " Consumer's

Guide to Arthritis Medication " among other things. At the bottom of the

magazine it said " this education supplement is brought to you by the Arthritis

Society, Pharmacia Canada Inc and Pfizer Canada Inc. So more or less to answer

your question, yes it was a magazine that I got all this information from and

the magazine was provided by the Arthritis Society. To tell you the truth, I

think I typed out the whole entire magazine....no really! It took me a good

five hours if not longer but as long as someone finds it a 'good' read or

informative then it was all worth it to me. Yes it was a lot of typing but I am

feeling much better today and don't plan on typing very much at all.

Talk about luck, today my internet server keeps dropping my connection on me

while I am surfing the net, etc. and it has done it at least 7 times in the last

two hours and twice while typing this....arrrgghh. Can you imagine how long it

would have taken me to type all that out yesterday if the connection was acting

up then, not to talk about how frustrating it would have been.

I hope I didn't make too many spelling mistakes.

Take care,

Marilyn

mhogg69@...

Re: whew!

Thanks for all your hard work. I read each and every one of them. Very

interesting. Was this from a magazine? I was wondering because you said you

typed it all instead of " copy and paste. " That was truly a labor or love.

Thanks, Caroline

June 14, 2002

Your so funny Marilyn; and we are happy that you were able to do that

without the connection problems. Have a happy, restful day and thank you so

very much, Patty

Re: whew!

>

> Thanks for all your hard work. I read each and every one of them. Very

interesting. Was this from a magazine? I was wondering because you said you

typed it all instead of " copy and paste. " That was truly a labor or love.

Thanks, Caroline

>

August 27, 2002

congrats on your hubby's promotion, what's his name, I saw the list tonight

in the Army Times, it said 8,400 made the list but that seemed awful high to

me but maybe it was right. I didnt see that many names though. My dh's

best friend made the list this time too, he's only been in for 8 yrs so he

has done extremely well to make E-7 but something about he was number 700

so he wouldnt get in pinned on until next year but still I think if you make

E-7 in under 10 you are doing good. He and my dh both made E-6 at the same

time 2 1/2 yrs ago, then my hubby went to WOC school shortly after that and

is a CW2 now, it's going to be several more years before he will get

promoted again.

You have alot on your plate!!! I used to be like that after I was first

diagnosed and starting feeling better, but in reality I just did more damage

to my jonts so now I just take it easy and work just a little bit.

December 28, 2002

In a message dated 12/28/2002 12:05:36 AM Eastern Standard Time,

cindysue@... writes:

<< How many of you listen to relatives who aren't around that much who are

clueless about DS and related issues? >>

I have had numerous run-ins with family members this year, about treating

Liam like a normal child, until he shows us he's not. My family wants him

watched constantly at gatherings and are terrified that he'll hurt himself or

others I assume. Even though all their kids had all been to the ER for

stitches, broken bones or swallowing things by his age. He's only been to the

ER for pneumonia. So far this holiday season they've backed off, but only

because I've threatened to stay home.

At one gathering I heard a Grandmother complain about the fact that her

granddaughter (w/out DS) is being medicated for OCD at the age of 8. She

and the little girl's aunt are very much against giving the child medication,

although they couldn't offer any other suggestions. I'm sure the little

girl's mom heard the same earful I did. So if it helps , opinionated,

meddling relatives are everywhere.

Kathy, Liam's mom(4 1/2)

December 28, 2002

That's exactly how I feel every time my Dad visits. The last time he

was here he got on this kick about how if Ben didn't start eating

hard foods his teeth would fall out. We told him that Ben goes to

the Dentist every 6 months but he wouldn't shut up about it. things

peaked when Mollie walked in on my Dad holding Ben's mouth open the

way you do a horse to check his teeth. Ahhh family.

Although I generally have a low opinion of pharmaceutical companies,

I think they should market a " 5 day stress pack " of an anti-anxiety

or anti-depression med which you could start taking just before

certain family members arrive for a visit or just before your

vacation ends...

Glad you survived.

December 28, 2002

,

Yes...we had a couple of " comments " this past week with relatives that

really hurt. About 6 months ago, we had a preschool disaster when we

moved up to the older class. The very first day, the teacher

called him a " wild child " and sent him back to the younger class after

just an hour or so. When I showed up and they told me this, I thought,

Wow! Was he biting, running around grabbing kids hair, pulling chairs

out from under people, kicking the teacher, what happened to my sweet

son?!?!?! I had watched through the 2 way mirror for about 30 minutes

before I left the building and he was not a 'wild child'. He wasn't used

to her routine and she was much more strict than the teacher he had for

the whole year before, so it was apparent he would need to get used this

new teacher's routine. When the teacher would call a student to come

forward, would stand up and follow the other student...just little

things like that. Anyway, this teacher supposedly had a Masters in early

childhood education, blah blah blah, so I figured (I was going to say

assumed, but we all know what that means! lol) that she would know this.

When I tried to have a meeting with her before his first day, she

refused and said that she wanted to have him in her class for 2 weeks

before we met, so that she would know him better before the meeting. I

thought " o.....k..... " , and went along with it. So, then I guess during

the 30 minutes after I left, all heck must have broken loose?! Maybe a

Dr. Jeckel and Mr Hyde kind of thing?! No...after delving deeper I found

out, " he wouldn't stay in his chair " . I was fuming! I made a HUGE stink

about it to the director of all the chain of preschools, but we didn't

push the issue about him staying in the older class because we didn't

want him in a class that the teacher was so ignorant, he was having

surgery about 2 weeks later anyway, and he loved the teacher he had

before. She gladly took him back for the 2 weeks and after the surgery,

we never brought him back! By the time he recovered, Kindergarten and a

" regular " school was going to be starting shortly which by the way, is

going great!!). So...I tell you that because I was in tears for a long

time. I confided in just a couple friends and family about my hurt, and

a couple of them jokingly agreed (which hurt more). We try really hard

to treat like our other kids and that means even expecting polite

behavior, etc. He says " cuse me " when he toots or burps, " sorry " when he

hurts someone, " please, thank you " , etc. All without reminders. He

walks up to ANYONE who looks hurt or sad, pats their back and says " K? "

with the sweetest look on his face. He is so concerned if the are okay

or not. Now, he IS impulsive, and excited about being included and

involved (like that getting up when the teacher called a different.

child...or if he sees something he wants he has a hard time resisting

touching it or grabbing it, etc. But, I would take all the sensitivity

and politeness and trade if for some " spunk " =) My husband and I

because of the whole incident now call " high spirited " just to

each other as a way to relieve some of the stress and to joke about it.

So, anyway, that was behind us, right?! 6 whole months ago... Well, now

just over Christmas, my family was talking about some of the kids who

were there and how undisciplined they were, yada yada yada. I said to my

mom. See, did really well and I was so proud of him with all the

excitement, he did great! She said, " well, I worry more about his

impulsivity and he isn't really aware sometimes of what he is doing. You

know he IS a wild child " ...ouch! was that a try for humor? I am not

sure. She is one of the people I confided in 6 months ago. I want to

let it go, but it still hurts very much. Sorry this is so long. I

didn't mean for it to be with just one little comment. Thanks for

listening...

Kym...mom to 4 including 5 year old with DS

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December 28, 2002

You know,

there are so many people who dont have a clue what we go through to raise our

kids and try to make the best decisions for them. I sometimes just want

people to spend one school morning in my house to see how it really is here.

My mom did make a comment about something being my fault and that my kids

arent as independent as we were. I was wondering if she had a temporary

lapse in memory and forgot that actually has DS or not! LOL

And I also think its worse when they come occasionally, they just expect our

kids to be a certain way and then they are their own way, which all of us are

so used to, that for us, the parents, we dont notice the differences.

Good thing is that the ocassional house guest is just that - ocassional and

now they are gone!

Well, at least we have each other - this extended family and we sorta know

what each of us goes through in our own way.

~ Mom to 12 DS and Diabetes Type 1 and 8 NY

December 28, 2002

Hey sue,

You can call me anytime!

It's always our fault, didnt you know.

December 28, 2002

Although I generally have a low opinion of pharmaceutical companies,

I think they should market a " 5 day stress pack " of an anti-anxiety

or anti-depression med which you could start taking just before

certain family members arrive for a visit or just before your

vacation ends...

I think my dad is at the age where too much commotion makes him nervous. He's

always been self centered (hahaha!, but I thought that was a male thing..sorry

guys). I did tell him to take something the next time he comes and

visit....lol!

December 28, 2002

In a message dated 12/28/02 9:41:42 AM Central Standard Time,

Knm@... writes:

> Although I generally have a low opinion of pharmaceutical companies,

> I think they should market a " 5 day stress pack " of an anti-anxiety

> or anti-depression med which you could start taking just before

> certain family members arrive for a visit or just before your

> vacation ends...

>

> What a wonderful idea!!!! someone should market that. Jessie

>

December 28, 2002

linman42@... writes:

<< Well, at least we have each other - this extended family and we sorta know

what each of us goes through in our own way.

~ Mom to 12 DS and Diabetes Type 1 and 8 NY >>

-----------------------------

AMEN!! I don't know what I'd do without this list.

Terry

Mom to Evan, 7, DS and to Kohl, 1, nda

December 28, 2002

None of my family came around on Christmas...everyone had other plans,

cruises, etc. So I didn't have to deal with " those " attitudes during the

holidays.

However---I've been under so much pressure lately. I'm tired and frustrated.

I'm still working 3 jobs. Katelyn is 13 with a vengenence. The hormones just

drip off the walls some days. Karrie is beginning to have some behavioral

issues. I felt like the world's worst mom one morning, fighting with the

kids. I called my mom after I got the kids dropped off at schools. I was

really needing an ear with a little sympathy, I guess. What I got was " It's

your fault. You should have been disciplining them, like I told you " .

Hated to tell her that with Karrie, anyway, the discipline isn't the

problem. I'm glad you guys understand!!

Sue mom to Kate 13 and Karrie 6 w/ds

December 28, 2002

We have always been pretty lucky with relatives and friends. There

have been a few incidents. We had never been around my brother's family

till was about 11 years old, and we visited them overnight. After

supper the other kids went to the basement to watch TV and didn't invite him.

To be fair my SIL had a sister who was retarded and didn't interact much

with the kids, altho she was older. Anyway, my brother finally turned on the

TV in the living room for . Later, my nephew who was a little younger

than got out a game, I think it was Concentration which had

never played before. Soon Bruce came out to us amazed. " He BEAT me " , he

said. Bruce may have gone easy on him the first game but soon found out that

didn't pay. From then on he was one of the kids.

And they have all been great to him ever since.

There was the time there was a TV show on about a little boy with DS,

don't remember what it was now. But my mother watched it, then asked if

did. The boy on the show acted out a lot and misbehaved. My mother

wondered if R. might have got ideas from that to act that way. I told her he

didn't identify with that kid any more than another, and he didn't pick up

that stuff from other kids. I was surprised at her. She and were

very close,especially in later years, but now and then she would come up with

something stupid.

The one that I still get occasionally from other people is that R.

must have heard someone else say that or something to that effect. As if he

couldn't think for himself. He knows what he likes or doesn't, and very much

thinks for himself. Even the mother of a girl with DS said that the other

day. I told her doesn't approve of gambling and I don't really know

why, we've never talked about it. She said, well someone must have said

something like that. Bull! He can think for himself. He also doesn't

approve of alcohol but he may have heard more about that. This same mother

gets my goat sometimes because she doesn't give her own daughter credit for

being able to do things. For instance I had some outpatient surgery a few

years ago and took me so she could drive me home. They said I should

have someone with me for the first 24 hours and she thought I should go home

with her. I told her, No I had and he would take care of me. Which

he did and it wasn't the first time. 's daughter would have been just as

capable, if not more so because she can walk and has learned a little more

cooking, etc than has. But they wouldn't think of her doing that.

Sometimes I think I'm the only person in the world who realizes how smart she

is.

Something cute. About 5 years ago I tripped and fell on our front

step and hit my head on the brick wall. Long story, but I had a bunch of

stitches in my head, plus was bruised all over. I was taken to the ER by

ambulance. Anyway they told me to have someone check on me for awhile. I

went to bed early and asked to wake me up every now and then and if

I didn't wake up he should call for help. Well, he took it very seriously,

he must have woke me up every 15 minutes. I like to never got any sleep.

Finally I told him I thought I'd be all right so he could go to bed. He was

very conscientious but it was kind of funny too.

But many people just don't understand.

Jessie, mom of , age 37, the light of my life.

December 28, 2002

In a message dated 12/28/2002 9:59:32 PM US Mountain Standard Time,

JB66111@... writes:

>

> But many people just don't understand.

I got Maverick and these flashlights that go on their foreheads for

Christmas. (got them at Walmart...ooops!) They LOVE them. Maverick is still

up at night at least once..usally to sneak some pop or lately egg nog from

the fridge. The other night I heard the door open and I called out MAV!...

pretty soon he comes meandering into my bedroom saying " I didn't DO

anything! " He had his flashlight on his forehead. I laughed so hard I woke

up..he turned to see what I was laughing at and he also started to

chuckle. It was great!

The next day I relayed the story to both my mom and my sister. They didn't

think it was cute..they just pointed out that that was one more reason why

they never have him overnight and he's too old for that..and we need to get a

lock for that fridge!. I feel so sad that they can't see the JOY of those

simple little antics!

December 29, 2002

In a message dated 12/28/02 8:42:42 AM Eastern Standard Time,

writes:

> Also, TIm's mom insisted that is isolating me and I am isolating

> him. She also said I am going to resent him for that. I've raised that

> kid for 9 years now and any good mother will accomadate her child based on

> their needs.

Ignorance is bliss! (not!!) , there was a while that I avoided places

like the grocery store, mall, shopping centers, etc., with Sheila, but she is

now able to do short trips. I never felt " isolated " . Like you, I did what I

felt was right for my child. I didn't (don't) resent Sheila. Forrest and I

did enough trading off shopping and staying home with Sheila that neither one

of us felt isolated or resentful. If anyone was going to feel resentful it

would be Forrest. He, pretty much, took over the grocery shopping, LOL. A few

years ago we started dropping by a mall on our way home for church. Since

food has always been a motivating teaching tool for Sheila we would do lunch

and a brief trip into one store while there. As she got more comfortable with

the crowds, distractions, noise and sensory input we have been able to do

more stores while there. If it is clear that she is not tolerating the visit

we just do lunch and leave. Sounds to me like you and Tim and doing well by

matthew!

nancy

December 29, 2002

Yes, . I feel sorry for your Mom and sister. They are the ones

that are missing out. I can't imagine living with such an attitude. We had

a laugh in church this morning. There were hardly any people there, I don't

know why, and no children so the pastor asked if any of us would like to come

and share with her. I volunteered and then several others did too. In the

process we were each given a little plastic whistle to blow. At the end she

said she always tells the children that they should give the whistle to an

adult to hold during the rest of church. So when we went back I asked

told hold mine so I wouldn't make noise during Church. He refused and it

broke everyone up.

And poor Mav, caught in the act and then laughed at. LOL.

Jessie, mom of , age 37, the light of my life.

December 29, 2002

In a message dated 12/29/2002 3:15:58 PM US Mountain Standard Time, JB66111

writes:

> And poor Mav, caught in the act and then laughed at

LOL..so POOR MAV....climbs on the bed where I am in the middle of feeding my

2 month old and he says, " I didn't do anything! It was an accident! I

didn't MEAN to! I'm sorry. I said I am SORRY!! "

All his excuses!

December 29, 2002

,

I'm so glad you have shared your stories about Sheila these past few years. I

have hope that will be able to tolerate outings more in the future. I

use to take him to the grocery store with me - but he has refused to go for the

past few months. He will not hesitate to tell me what to buy for him

though...lol.

Tim begins a new work schedule in January. He'll have Fridays and Saturdays off

now - this past year it was Monday and Tuesdays. He also works more day shifts

and planned his schedule around our family needs. Schedules are based on

seniority and he has been an ATC for almost 17 years now. Finally - we can do

something together as a family on Saturdays. Tim will run to the grocery store

to pick up a few things, but I have banned him from major shopping....lol

's needs are so complex. I feel good that we are getting a handle on

things. He really is a neat kid that we have alot of fun with.

Re: Whew!