Guest guest Posted March 5, 2007 Report Share Posted March 5, 2007 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!! " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 - 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 , 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 These implants screwed us all up Sandy~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2010 Report Share Posted May 26, 2010 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 Quote Link to comment Share on other sites More sharing options...
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