Kim

[Guest guest]

It's so sad that this even has to be a topic of discussion, but I can SO

relate too.

I have been blessed with many wonderful friends that do understand and

love my son no matter what, BUT I do have some friends that don't say

anything -- I rarely talk about bad days or anything to them, but if

they ask specifically I might say something about how he's doing. You'd

never know I'd ever mentioned it, these two in particular always ignore

any comment I make. It's really sad. They don't know what to say, so

they say nothing. I understand on one hand that they don't want to say

something wrong, but it's always a way of shutting down the conversation

and it's not fair. Their problems are fair game for discussion but mine

aren't? Sadly, I've stopped being too personal with either of them

anymore. If they can't take the time to show any interest in ds, I can't

take the time anymore for theirs. It sounds selfish, and I hate

that..and I promise that people would tell you I am truly someone who

listens and is there for others' problems, and I've always been someone

people can call. I enjoy that. I want to be there for them, but it's sad

that it can't work both ways.

What I'd love for them to say? I'm easy -- " How's ds doing? " and for

them to MEAN it. Yes, it would be cool though if they said they found

something online and read it, or showed some interest. Some of my best

friends have done that, and others show support in other ways. I am

lucky, for a while there I didn't tell people and then I figured, who

cares. It's my life..like it, fine, if not, leave, I don't have time for

drama or hassle, you know?

Tanna wrote:

>

> Kim, I am sorry too.....all is forgiven I hope!

> What you said about your friends...I can relate so well.

> They do not know what to say, so they are pretending there is nothing

> wrong with your child. It hurts.

> Here's what we WANT them to say!!!

> " I bought a book about aspergers the other day, and I was reading it

> last night and I wanted to ask you........ "

> OR

> " I was searching the internet yesterday for aspergers and I have

> joined a group so that I can learn all about your son......I thought

> you'd need a buddy to talk to about him, and I want to be that friend. "

> OR

> " Don't you worry, I totally understand your son, [they tell you your

> son's likes and dislikes] and he will be perfectly safe with us, I

> won't leave him alone for a MINUTE! Go, pamper yourself, it will be as

> if he is with his own mother.....I know all about aspergers and I'm

> not afraid!! "

>

[Guest guest]

- Thank you for the concern. I am ok.... my family is safe...the fire has

been beyond

belief. Tonite we all up gratefully listening to sounds of planes & engines We

can see the

stars & moon a beautiful sight.Finally! 40% containment!!!!! This is one's worst

fear

realized. I have my home but so very many in my community do not. Jolts

everything into

perspective. More about the " back " later. I've spent a bit of time @ UCSF...

Take care- I will chime in soon...promise...

BE FIRE SAFE- ARE YOU READY?? Don't wait.....

xoxo

Kim

>

> Dear Kim,

>

> I have been thinking about you, and if you are out there lurking and not

chiming in,

know I was worried about you with this awful fire in Lake Tahoe, and would love

to hear

how you are doing, and if you have scheduled your surgery for the fall?

>

>

> Colorado Springs

>

[Guest guest]

Dear Kim,

Sooooo glad you and your family are okay, and that containment is around the corner. I grew up in California, had family up in the hills and mountains there, and fire is an ever present danger for them. Here in Colorado wild fires are seemingly a part of summer, and I've often thought about them even in my own neighborhood, since we live in hilly terain. I remember years back the bad wild fires that swept through the Berkeley hills, terrain similar to parts of Colorado Springs, though we are more in the praire part. Ready, not as well as we could be.

Look forward to hearing from you about your latest adventures at UCSF, and glad you chimed in, and know we are thankful you are safe!

Colorado Springs

[ ] Re: Kim

- Thank you for the concern. I am ok.... my family is safe...the fire has been beyond belief. Tonite we all up gratefully listening to sounds of planes & engines We can see the stars & moon a beautiful sight.Finally! 40% containment!!!!! This is one's worst fear realized. I have my home but so very many in my community do not. Jolts everything into perspective. More about the "back" later. I've spent a bit of time @ UCSF...Take care- I will chime in soon...promise...BE FIRE SAFE- ARE YOU READY?? Don't wait.....xoxoKim>> Dear Kim,> > I have been thinking about you, and if you are out there lurking and not chiming in, know I was worried about you with this awful fire in Lake Tahoe, and would love to hear how you are doing, and if you have scheduled your surgery for the fall?> > > Colorado Springs>

[Guest guest]

Kim,

I am so relieved to hear you and your family are safe. The news reports

are clear how devastating the fire has been to your community.

When you get the chance we will all be glad to hear how you are doing

with your back...we have missed your presence here.

Take Care,

Cam

[Guest guest]

, Cam & all,

Thanks so for your kind words. Gratitude is all I've

been experiencing of late. Today my daughter Grace & I

were at the grocery store and we both started to cry

after talking with a few acquaintances, why, cause we

had somewhere to put our groceries...the news is

better re the fire as long as the winds and the newly

coined type of tourist: " disaster tourists " lay

low...why would you want to bring your family on

vacation to a disaster area??

I will (later tonite) write about UCSF and Dr. Hu et

al....

until then cheers!

Kim

--- cammaltby <cammaltby@...> wrote:

> Kim,

>

> I am so relieved to hear you and your family are

> safe. The news reports

> are clear how devastating the fire has been to your

> community.

>

> When you get the chance we will all be glad to hear

> how you are doing

> with your back...we have missed your presence here.

>

> Take Care,

> Cam

>

>

________________________________________________________________________________\

____

Be a better Globetrotter. Get better travel answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545469

[Guest guest]

I'll be seeing Dr.Hu tomorrow (Wed.) Let me know what's up with you.

I'll post my info after seeing her on Thurs. or Fri.

Carol

>

> > Kim,

> >

> > I am so relieved to hear you and your family are

> > safe. The news reports

> > are clear how devastating the fire has been to your

> > community.

> >

> > When you get the chance we will all be glad to hear

> > how you are doing

> > with your back...we have missed your presence here.

> >

> > Take Care,

> > Cam

> >

> >

>

>

>

>

>

______________________________________________________________________

______________

> Be a better Globetrotter. Get better travel answers from someone

who knows. Answers - Check it out.

> http://answers./dir/?link=list & sid=396545469

>

[Guest guest]

yep, over and over and over

and on and on and on.....

but........we WILL get well.......

that is for sure !

Loveya ~ Me**************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

These implants screwed us all up

Sandy~

[Guest guest]

Thanks, Kim. I'm hoping to be well enough next week to go to a small, exciting

architectural conference, as we've done for many years. Architecture was my

previous profession. The conference is in Monterey, CA, at Asilomar. It was

designed by in the 1920s as a summer church camp on the beach and

in the redwoods.

Harper

[ ] Harper

Harper,

?

Welcome back. I hope with each day you get stronger and feel better.

?

Blessings,

Kim, SC

[Guest guest]

kimidont know what i did w/ your number and i would like to set it up for you to

come to a's school and do that presentation i wnat to talk over the phoneplease

give me your number againpeace thanks so much!!laina

From: Kim <kimperrymsw@...>

Subject: Re: [ ] 1st meeting w/ princ, nurse, guidance tomm

Date: Wednesday, May 26, 2010, 8:14 AM

 

This is simply not true about a 504 so please be cautious here.  A 504 is

absolutely legally binding and holds plenty of weight.  The Office of Civil

Liberties can come in and shut down an entire school and/or hold individuals

personally liable for not abiding by the accommodations set forth within the

plan.  IDEA makes sure of this.  It is often beneficial to have a 504 plan,

particularly if a child does not qualify for an IEP based upon the qualifying

conditions for special education regulations.  Having a Lyme diagnosis may not

qualify a child for SS if it " seems " not to be impacting their education and/or

does not require specialized instruction.  The 504 is to ensure that a student

receives the needed accommodations based upon their particular disability.  

Laina, the school dept has 60 days to complete evals, then 10 days to develop

and implement an IEP.   If that is what your child needs, don't let another

day go by.  Document everything.  Put everything in writing to the school.

Kim 

 

________________________________

From: CT <iamwhimsy@...>

Sent: Tue, May 25, 2010 11:40:08 PM

Subject: Re: [ ] 1st meeting w/ princ, nurse, guidance tomm

 

First, do not sign anything without taking it home to read it and digest what

you read.

Second, document all of his symptoms, how it affects his ability to attend

school and/or complete the work at home, and then what accomodations can solve

or help solve the problem.

Third, do not request a 504, you always want to request an eval for an IEP, and

then if you can't get your child qualified on an IEP and the only chance you

have of receiving accomodations is a 504, you agree to that. A 504 is not

legally binding and doesn't carry the weight that an IEP does. Though to be

honest, it's too late in the year for either a 504 or an IEP. However, you can

inform the school that you are requesting an eval to begin at the beginning of

the coming school year. Most states have at least a 30 day time period for the

school to complete the eval (New Mexico is 60 and there are some others that I

know are 60 also). If by chance you are lucky enough to have be in a state that

has a 30 day or less (and you have that many days left of school), you may be

able to push enough to get the process done, stating that you want it in place

on day 1 of the new 2010 - 2011 school year. (It's doubtful this will work, it

may be worth a try if you

have enough days of school left though.)

Fourth, remember that you will need to educate the school personnel on your

son's illness. They do not understand, and they don't have a lot of time to

learn, you need to be concise with your information. A 1 page summary of ways

the disease affects people is helpful, most especially if a majority of it is

bullet-pointed. If it's straight and to the point, they are more likely to read

it. At the end, or on the reverse side, list some web site links that have

truthful Lyme info. Many teachers and administrators will search out more info

and you want to insure that info is accurate (not all will, but there are many).

Fifth, be confident in yourself and your son. Teachers and administrators do not

know everything. We know our child best, we now how they work and what they are

capable of. Your knowledge and experience with your child is every bit as

important as a teachers training. Do not let yourself be intimidated. Question

things that don't seem reasonable to you. If they tell you it's what the

guidelines, policy or laws state, ask to see that particular law, policy, or

guideline in writing. And then remember, that policy and guidelines are just

that...... guidelines and policies. There is always " wiggle room " in policies

and guidelines. Policies can be changed, amended, and taken on a case-by-case

basis. Guidelines are guidelines, not set in stone.

Good luck,

Charlotte

iamwhimsy@...

http://whimsy.t35.com

[ ] 1st meeting w/ princ, nurse, guidance tomm

Hey all,

My son 12 is having a really hard time right now and has missed several

consecutive days of school recently as well as several days earlier in the year

all due to lyme - dr.'s appts and flare ups

At this point he has missed the past weeks and the teachers are sending home

EVERY piece of school work and it is just ridiculous.... somedays his head hurts

so bad (lyme migranes) he can't even look at the tv, he can only listen. There

is no way he can read the amount of material they need him.

Some teachers are understanding and they are willing to send home tests and

allow me to read them to him and even write for him and he can just tell me the

answers but then in other classes like math.... I can't read to him 2x+3y-7=15

these problems need to be worked out on paper you know?

So tom I am having a meeting w/ the princ, nurse, and guid to discuss how we can

help him successfully pass the 7th grade and I was hoping for any guidance from

the group...

As I am not really sure what I am requesting from them and I am afraid they are

going to rec summer school and I don't want to agree to this because I have no

way of knowing if he is in fact going to be better in July... I pray he will be.

I f anyone has ANY advice on what to do or say it would be really helpful I am

kind of nervous....

Also any advice on the migranes would be helpful too he has hardly left his dark

bedroom in over two week and the light is just so painful...

This is soooo hard