Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Barbara, I am in Northwest PA. Bradford to be exact. >Deborah Lea --- Barbara Eckert <borjeckert@...> wrote: > Hi , > > I read your post to, I think, Tricia regarding > getting people together who live in > the same area. I was wondering if you know of any > parents in Northwestern PA (or if > anyone out there reading this is from the area)? > > Thanks, > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 , these are the ages broken down in my book for the School. Study skills ages 10-16 Art ages 8-14 High school ages 14-18 Tutoring, Language, communication & speech, all ages There are probably some exceptions to this, I would imagine.Even if your son is too young for their programs, I bet they would be able to refer you. What specifically are you looking for ? A full time program os a summer one ? Do you have one of the GLRS books ? , 42, Stargardt's disease with cone-related disorders Children : ,12, developmental dyspraxia, NVLD, ADHD, mood disorder not specified Kristian, 27, Trisomy 13, severe MR, lives in group home Andy, 23, lives at home, no diagnosis Husband , the most wonderful husband on the planet www.smartgroups.com/groups/MAPBPKIDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Okay, forgive my ignorance, but I have no clue as to what a GLRS book is. Since is only 2.4, I need some type of preschool which specializes in helping the special needs child. We are looking for a 3 day a week program but I am pretty flexible on that. I just wrote tothe Adaptive Learning centers to see what is involved there. I am afraid that a lot of these schools will have 6 month waiting lists. I am thinking of checking out the Montessori schools in the area. Where he goes now is super convenient and it is a private facility but they are not just for special needs kids. We had hoped to mainstream him as long as we could but I am learning that is is really going to need something more tailored for individual needs. Stacey >, these are the ages broken down in my book for the School. >Study skills ages 10-16 >Art ages 8-14 >High school ages 14-18 >Tutoring, Language, communication & speech, all ages >There are probably some exceptions to this, I would imagine.Even if your son is too young for their programs, I bet they would be able to refer you. What specifically are you looking for ? A full time program os a summer one ? Do you have one of the GLRS books ? , 42, Stargardt's disease with cone-related disorders >Children : ,12, developmental dyspraxia, NVLD, ADHD, mood disorder not specified >Kristian, 27, Trisomy 13, severe MR, lives in group home >Andy, 23, lives at home, no diagnosis >Husband , the most wonderful husband on the planet >www.smartgroups.com/groups/MAPBPKIDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 , Jenn, , ...whatever!! hehe I know what you mean about looking at Lucas's head, my and I are doing the same thing almost daily. 's head is flat on her left side. It has pushed her left ear forward an inch. I hope she does ok with her band. She seems to notice a lot around her so I'm sure she'll have a pretty strong reaction to the band, I'm hoping for it to be somewhat positive. I live in Southern California in the city of Aliso Viejo. > > yes I woudl love to know this too. > > elizabeth > > Caleb 2 and Lucas 6mths (going in to a starband on 8/26) > > PS our precious babies are getting their bands on the same > day! > > Reactions to bands > > > > > > will be getting her STARband on the 26th. I was just curious > > about what kind of reactions to expect from people when we are out > in > > public. I don't really mind if people stare but are there any > > questions that people seem to ask on a regular basis when you are > > out? I'd like to be able to answer them intelligently. has > > been so nosy lately I have the feeling she'd like the extra > > attention, if any, wearing the band may bring! > > > > > > Mother of (will be banded 8/26/02) > > California > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 -- Re: [low dose naltrexone] to Sue--OT There is a really good lyme support group in Austin. They might give you some insight/info , How do I get in touch with this Lyme group?Are you in Austin also? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 No, I am in Houston and just started a group there. For info on the Austin group, go to www.lymenet.org - put in State, city and it will list group info. If you still are having trouble finding the info, email me direct. lucher@... <cindyyoung@...> wrote: -- Re: [low dose naltrexone] to Sue--OT There is a really good lyme support group in Austin. They might give you some insight/info , How do I get in touch with this Lyme group?Are you in Austin also? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 Marcia, I have been taking Glyconutrients and they are supposed help restore and rebuild your cells So I thught of you maybe it will help you also. If we wait for the Dr.s to do then they will kill us with their drugs. If you want to ind out more about glyconutrients go to manetech.comcom --- marciemjm@... wrote: > BTW...Rebif caused a friend of mine to become > suicidal! Luckily, his wife > forgot something and returned home to stop him from > taking his life! Rebif IS > dangerous! > > Marcie > > > > Well kids, this is what he told me. He said no > way was I to take low doses > > of Naltrexone. He said the stuff is dangerous, > bad dangerous. Period. And > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 , I am sorry if I sounded sarcastic. I am sorry if that term "defect" bothered you (and NO, we don't use that word freely in our household.) I actually applaud you for speaking up for your beliefs and for your positive acceptance of your appearance! You took a stand, and bravely stated your concerns, although they may have been taken the wrong way by many people, myself included. Your parents obviously did an amazing job raising you. I admire people like you, who are not afraid to voice their opinions when they feel strongly about something. I have always encouraged to do the same. Obviously though, this (dare I say it) surgery vs non-surgery issue is too touchy a subject, and is best put to rest. When I saw your photo (if that was you, under the name ), I had to smile - you look so much like . You also seem to share her spunk, intelligence, and zest for debate. Great qualities, when used in the right way. Sometimes, it is not what we say, but the way in which we say it. Let's bring this forum back to what it is intended for: a Blepharophimosis support group. We all have BPES in common, and we all need each other's support.If, down the road, you decide to have surgery (medically, cosmetically, or otherwise), we will be here to support you. Colson <kureeji@...> wrote: You know what, I dont see myself as having a defect. My family support system included being told that i was valued, no matter what i look like. I guess my family has a different definition of rude, because i would never go up to my grandmother and say "Your eyes are a genetic defect." I feel bad that in your family the word is used so freely. It just seems callous. But who am i to judge what words you use? I dont know how old your daughter is, but i hope that she always feels that confident. And why be sarcastic? Am i being sarcastic to you? blepharophimosis From: dhaskins214 Date: Mon, 19 Nov 2007 09:47:34 -0800Subject: Re: blepharophimosis Re: Surgery? Its sickening Not sure what medical encyclopedia you are using, but BPES is a congenital DEFECT. My child must be very confident, and secure, because that word would never effect her "self worth"! She knows who she is, values who she is, and loves who she is. Again, that family "support system" paid off!h <kureejihotmail> wrote: I understand where you are coming from. I was speaking about surgery strictly for cosmetic purposes, done by parents who may or may not know all the facts about their child's condition. 'My daughter thanks me every day for loving her enough to correct a defect that needed correction.'I would hope that your daughter never hears you refer to her condition that way. I have no words to explain how much that would hurt her definition of self-worth, if she is a young girl.> Im struggling right now to write this post with some sort of tact. I > thought this was a support group for people with "blepharophimosis" > but to me it seems like surgery is what is being supported.... > > I would never dream of having surgery. What would i tell my child, > when it was born, with eyes like me? How could i justify it, and tell > him or her that she is beautiful, except one thing, which surgery > could "fix"? How could i make him face the world alone, if i had went > through surgery to get 'normal' eyes? The child would come out with a > perception innately that something was wrong with him. Why else would > mom have changed herself, if there wasnt a problem? > > I hear of kids going through 3 or 4 surgeries. I dont know if non > affected parents have a complete understanding of just > how...disturbing this is. > > In my family, people have had eyes like mine since before my great > grandmother. I cant imagine what it would be like for two parents > without the eyes to have a kid with the eyes. They must feel > estranged, upset, scared, i dont know. > > But out of the bottom of my heart i would urge every single parent > who ever has a child with the eyes to think about what they are > doing. > > I grew up with family, constantly telling me i was beautiful, that > there was nothing wrong with me and i had as much right to be on the > earth as anyone else. I dont know what it would be like to be alone, > never seeing a family member with eyes like yours, and then to have > your parents show you in the direction of surgery. > > My eyes dont give me a huge vision problem, i dont even have ANY > vision problems. So for an unaffected parent to give their child > surgery at the age of 3 or 5 or something just really really upsets > me. I was taught love and acceptance of peoples differences. > > I have been mocked, ridiculed and degraded my entire life by people > who dont understand because of my eyes. But at the same time, i would > never get surgery to fix my outside appearance. It wont change my > genes. > > Fuck being normal. Seriously. The people who hold my company love and > accept me for who I am. Ive waded through the callous assholes, and > the friends i have now are true friends. A little bit of extra skin > around my eyes doesnt change the way they feel about me. Sometimes i > thank god i was born this way. Now i know people love me for me > instead of strictly my appearance. > > This post is huge and rather unorganized...but we aren't diseased, > people. We have extra skin on our eyelids, and some of us have vision > restrictions. We have all of our limbs. We can talk, be articulate, > create things...Any time i feel bad about my eyes i just think about > people confined to wheel chairs, people who cant take care of > themselves or who have mental disabilities. > > Do people put their children through surgery saying they want to make > their children feel better about themselves??? > > I didnt even know my eyes were any different than anyone elses till i > was about 5, and even then it was a tentative understanding that i > was different. > > I think maybe its the parents who feel uncomfortable. Maybe they want > to make themselves feel better about the way their child looks, and > not vice versa. > > Im not trying to attack anyone personally, and if you want to call me > an asshole, or hate my words, please feel free. But i will tell you > that i live this everyday. > > My cousin went to go have corrective surgery on her eyes. The only > one in our entire family out of three generations. The doctors messed > up the operation and now she has limited function of one eye. You > tell me what is better. > > Im really upset about this 'support' group. Im upset that i even > found it. I thought i would be able to share experiences with people > like me. I didnt know that i would find people like me, going through > surgery, so they wouldnt be like me. > > > > > > > ---------------------------------> Be a better sports nut! Let your teams follow you with Mobile. Try it now.> > > > > ---------------------------------> Never miss a thing. Make your homepage.> Get easy, one-click access to your favorites. Make your homepage. Connect and share in new ways with Windows Live. Connect now! Be a better pen pal. Text or chat with friends inside . See how. Quote Link to comment Share on other sites More sharing options...
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