Re: Yesterday

March 28, 2001

Thanks, Sue, for your account of Lobby day, and let's hope the optimistic

feeling you got will be verified during the year ahead.

Nelly

[ ] yesterday

> Hi all,

>

> Yesterday in Albany was my first Lyme Lobby Day, and I'm really glad that

my

> husband and I went.

>

> Soon after we arrived, the out-of-staters stood in the front of the

teach-in

> area, and on cue each of them held up a huge sign that had a single letter

> on it. Together the letters spelled something like, " The world is watching

> NY OPMC bias against Lyme. " When the signs went up, everyone started

> cheering, and the T.V. cameras were whirring away. For me, it was a very

> emotional moment.

>

> The parents of one of the speakers, a doctor from Connecticut, were

sitting

> behind us. He made an excellent speech about Lyme; his parents (about my

> age) must be very proud of him. My husband noted that the doctor was

reading

> his speech, so I hope someone can get a copy of it and publish it.

>

> Pat , president of the Lyme Disease Foundation (I think) also made a

> great speech. I hope that someone will post some of the important

> announcements she made.

>

> " Sue in New Jersey, " from this list, was one of the people holding up a

> large letter sign and I got to say hello to her. (For the record, she's

> young, slim, blonde and very pretty.)

>

> My husband and I were then sent with two others to speak to an assemblyman

> who is a member of the health committee, and he seemed very receptive to

our

> request that the scientific bias of the Office of Professional Medical

> Conduct be investigated. He said he would speak to the committe chairman

> about it and write to us.

>

> Then we were sent to the Capitol building to speak to legislative

assistants

> with about five other " lobbyists. " Again, the assistants were intelligent,

> interested young women who now seem to understand our point of view, and

> said they would talk to their bosses.

>

> I hope there are so many breakthroughs this year that there's no need for

> such a gathering next year, but if there is another Lobby Day, I'll be

> there, hoping to meet more of you. Meanwhile, my husband and I will be

> setting up appointments with our local assemblyman and senator, whom we

did

> not get to see yesterday.

>

> I came away feeling that we can accomplish amazing things if we all work

> together.

>

> Best,

> Sue B.

> upstate New York

>

> Welcome to

>

> Easy Reference:

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> /chat

>

March 28, 2001

Thanks for sharing your day with us. It sounds like it was a positive experience, and hopefully a help for our cause.

The human spirit is stronger than anything that canhappen to it.

C.

November 11, 2005

Hi ,

I know people do things different and only you know what is best for your child.

I personally feel that you should e-mail this to the medical PT center or mail

a copy to go in Annika's file. It could someday make a difference.

Hugs,

Roxie

Yesterday

I have debated about whether posting this or not but I am so both frustrated

and in humor over this situation I decided that I will post it. I will first

say that I am not trying to start a debate over child rearing policies or

anything but just wanted to share a little about the personality of my little

" princess " .

Yesterday she went back to her medical PT for the first time in about a month.

Last week we needed a doctor's order and before we were just so busy with all

the pre-reimplant appointments and keeping her healthy we just never made it.

Because Annika's balance is so much better it was really neat to see how she was

going to do. Well, for the first time in a long time Annika was able to walk

into the office from our vehichle all on her own(with the walker). She didn't

complain the whole time and was racing with me on the way in. I can say that it

is a fair distance but not managable.

So into the session she went and she had her moments but really had a good

session. She wanted to be carried out of the session. So I have an option. Do

I carry her, the backpack, the walker, my purse or do we wait her out. I told

her that I would carry her out to the waiting area to get her coat but then she

would need to walk. She understood and was fine once I put her down in the

walker and put her coat on. She walked out of the office and made it about 10

feet down the hallway. She then proceeded to start to pretend to collapse on

the floor and throw one of her temper tantrums.

Believe me as her mother I can really tell whether she is too tired to walk or

is she just wanting to control mom and have her way. This was definitely one of

those times that physically she could do what I wanted her to do so I had to

just let her thrown her tantrum. Well, true to Annika's form this was a good

one. It was lasting about 5-10 minutes. She wasn't screaming the whole time.

She would stop look around if anyone was paying her attention and then start

again. Or she would check if I was coming back to help her.

Well, then this couple came out of the office along with one of the

secrataries. They were convinced that Annika was hurt and no one was caring for

her. I could understand that. I was a few feet beyond them because if I stand

near her she will crawl over to me and start things again. I told them that she

was just fine she was just having a little fit(believe me there were many other

people who had walked by this whole scenario with comments like-she's three

right?, she is strong willed right?, she's stubborn?, only to be a child again

and think we can just cry to get our way. " Most people understood completely

what was happening. Considering this is one of the primary children's therapy

centers outside of the metro area this cannot be on uncommon occurence in this

place. The secretary asked me if she needed help up at all and I told her no

she could get up on her own(if I thought she couldn't I would be there, for

pete's sake I am her mom and I would help her to the enth degree if I could!!!).

Well, then the secretary went back into the office and then the couple basically

started to accuse me of child abuse. One comment was " she has a walker for

pete's sake she is disabled!!!! " Well, I wanted to say " no duh " . We exchanged

a few other words and I just didn't know whatelse to say. They walked away and

said that I could explain it to the police when they showed up. She was going

or had called(I don't know which she said) 911.

Right after the couple walked away, Annika stood up in her walker with a smile

on her face and walked the whole way out to the van with a very pleasant

atttitude. Like the past 5 minutes never happened. This is my child. Once she

knows we won't give in she is okay let's go then. And off she goes like it

never happened.

I just couldn't believe this. In the past 3 years of Annika's life, I have

never had to defend anything that we have done with her. I mean I never let my

boys get away with something like this but I am supposed to let her get away

with this because she is disabled? I know she needs more help than the boys

did and believe me she gets it but when it comes to the battle of wills as her

parent I have to make sure that she understands that she can't get away with

everything and sometimes we have to do things that we don't want to do.

Just wanted to share. I don't know why Annika decided to get up after this

exchange. I know that she heard everything that was said and probably

understood some of it. But after it was all said and done I didn't know whether

to scream, cry or laugh!!!

Mom of 4

Marcus 15

13

Jon 11

Annika 3

Bilaterally implant 3/1/04

Hookup 3/25/04

re-implanted 10/28/05-left

spastic diaplegic CP

November 11, 2005

,

I think that you handled things perfectly. As Annika's mother, you know

better than ANYONE else (aside, perhaps her therapist and other family

members of course) what is the best way to handle her. I agree with you

that this kind of " melt down " is surely not a first at the facility you

were at. You can pretty much tell in situations when the parents are

loving and caring and just " riding the storm out " and when there is

suspected abuse being verbal or physical. If the parent is trying to

remain calm, talk it through or, in your case just letting the moment

take it's course, then you can pretty much bet that everything is fine.

It's when the parents are screaming, yelling obscenities at their

children or hitting them, that you get suspicious. I don't know what I

would have done in your place with the couple threatening to call the

police. I think I would have wanted to scream obscenities and hit them!

After all, they have absolutely NO IDEA what you and your family have

gone through with your daughter. So, go ahead and scream, cry, laugh

and then laugh again. The joke is on that couple because they over

reacted. But, at least they cared. And that is good. They were

probably scared and concerned which prompted them to say/so what they

did. They could have handled things differently, but again at least

they cared. Hopefully, when there is a situation that does require some

intervention for a child somewhere in the world, there will be a couple

like that to " come to the child's rescue " . I am sure that if things had

gone so far as to get the police involved the couple would have felt

very foolish when it was all explained. Thank goodness for your sake it

didn't go that far though! I think you are doing a wonderful job with

your daughter and you are right to have certain expectations for her.

Just because she has special needs, doesn't mean that she gets special

treatment. Although you may have different expectations from her

because of her situation, you still have expectations and rules for her

that she must meet and follow. If you didn't, you would have a wild

child on your hands! So hang in there and know that you did what you

felt was right. And of course " Mom knows best " !

in Indiana

________________________________

From: [mailto: ] On Behalf

Of Wanha

Sent: Friday, November 11, 2005 5:52 AM

Listen-Up ; ;

ClarionCI ; cicircle ;

CI-Clarion-2 ; SWC_OurChildren; CPParent - For Parents of

Children with Cerebral Palsy

Subject: Yesterday

I have debated about whether posting this or not but I am so both

frustrated and in humor over this situation I decided that I will post

it. I will first say that I am not trying to start a debate over child

rearing policies or anything but just wanted to share a little about the

personality of my little " princess " .

Yesterday she went back to her medical PT for the first time in about a

month. Last week we needed a doctor's order and before we were just so

busy with all the pre-reimplant appointments and keeping her healthy we

just never made it. Because Annika's balance is so much better it was

really neat to see how she was going to do. Well, for the first time in

a long time Annika was able to walk into the office from our vehichle

all on her own(with the walker). She didn't complain the whole time and

was racing with me on the way in. I can say that it is a fair distance

but not managable.

So into the session she went and she had her moments but really had a

good session. She wanted to be carried out of the session. So I have

an option. Do I carry her, the backpack, the walker, my purse or do we

wait her out. I told her that I would carry her out to the waiting area

to get her coat but then she would need to walk. She understood and was

fine once I put her down in the walker and put her coat on. She walked

out of the office and made it about 10 feet down the hallway. She then

proceeded to start to pretend to collapse on the floor and throw one of

her temper tantrums.

Believe me as her mother I can really tell whether she is too tired to

walk or is she just wanting to control mom and have her way. This was

definitely one of those times that physically she could do what I wanted

her to do so I had to just let her thrown her tantrum. Well, true to

Annika's form this was a good one. It was lasting about 5-10 minutes.

She wasn't screaming the whole time. She would stop look around if

anyone was paying her attention and then start again. Or she would

check if I was coming back to help her.

Well, then this couple came out of the office along with one of the

secrataries. They were convinced that Annika was hurt and no one was

caring for her. I could understand that. I was a few feet beyond them

because if I stand near her she will crawl over to me and start things

again. I told them that she was just fine she was just having a little

fit(believe me there were many other people who had walked by this whole

scenario with comments like-she's three right?, she is strong willed

right?, she's stubborn?, only to be a child again and think we can just

cry to get our way. " Most people understood completely what was

happening. Considering this is one of the primary children's therapy

centers outside of the metro area this cannot be on uncommon occurence

in this place. The secretary asked me if she needed help up at all and

I told her no she could get up on her own(if I thought she couldn't I

would be there, for pete's sa ke I am her mom and I would help her to

the enth degree if I could!!!). Well, then the secretary went back into

the office and then the couple basically started to accuse me of child

abuse. One comment was " she has a walker for pete's sake she is

disabled!!!! " Well, I wanted to say " no duh " . We exchanged a few other

words and I just didn't know whatelse to say. They walked away and said

that I could explain it to the police when they showed up. She was

going or had called(I don't know which she said) 911.

Right after the couple walked away, Annika stood up in her walker with a

smile on her face and walked the whole way out to the van with a very

pleasant atttitude. Like the past 5 minutes never happened. This is my

child. Once she knows we won't give in she is okay let's go then. And

off she goes like it never happened.

I just couldn't believe this. In the past 3 years of Annika's life, I

have never had to defend anything that we have done with her. I mean I

never let my boys get away with something like this but I am supposed to

let her get away with this because she is disabled? I know she needs

more help than the boys did and believe me she gets it but when it comes

to the battle of wills as her parent I have to make sure that she

understands that she can't get away with everything and sometimes we

have to do things that we don't want to do.

Just wanted to share. I don't know why Annika decided to get up after

this exchange. I know that she heard everything that was said and

probably understood some of it. But after it was all said and done I

didn't know whether to scream, cry or laugh!!!

Mom of 4

Marcus 15

13

Jon 11

Annika 3

Bilaterally implant 3/1/04

Hookup 3/25/04

re-implanted 10/28/05-left

spastic diaplegic CP

November 11, 2005

Whenever I read your emails about Annika, I am overwhelmed at your parenting

skills. Annika is one lucky little girl to have such parents. One day she

will thank you for all your struggles in making her who she becomes. I have

no doubts she will go far in her endeavors.

Dee

November 11, 2005

I know people do things different and only you know what is best for your child.

I personally feel that you should e-mail this to the medical PT center or mail

a copy to go in Annika's file. It could someday make a difference.

I was going to email her therapist about this because I also thought that I

would need something on record for my sake. So thanks for confirming this

thought.

November 11, 2005

You bet girl, you have to look out for the little ones - protect them - they can

not learn and grow unless you are there to guide them even - if it is not their

ideal of how things are done.

Thanks so much for your reply - I remembered as soon as I emailed this to you

that things on the site should be kept on the site and I apologized for

suggesting you sending the e-mail. I was just furious that a medical PT center

would do that.

Roxie

Re: Yesterday

I know people do things different and only you know what is best for your

child. I personally feel that you should e-mail this to the medical PT center

or mail a copy to go in Annika's file. It could someday make a difference.

I was going to email her therapist about this because I also thought that I

would need something on record for my sake. So thanks for confirming this

thought.

November 11, 2005

, you're a wonderful Mom for encouraging independence in your

daughter.

November 12, 2005

The joke is on that couple because they over