Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Welcome Mohamad, I am new to this site also. Today is my first day. Although I am involved in other CMT support websites. My name is Casie (k.c.)and I am 23 y/o and was diagnoised with CMT when I was 8. If your daughter needs a friend or pen pal she can write me anytime. I will try and answer any questions she might have. If I don't know the answer I will find it out. Casie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 I have also just been diagnosed and I am 50 with 11 and 10 year old girls. I live in Cedar Rapids, IA. It is in my legs much more that my arms at this time. It is shocking news. Patti Also, it's hard telling someone. " Hi, how is your summer going? and by the way, I have a form of MD. " - It just doesn't make for a good conversation. I have told three very close friends and two relatives. I'm not planning to tell others. They might wonder when they see me in legs AFO's, though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 Hi I too was happy to find the group, just wanted to say hi. my name is shelley, I live in England. I'm 40 and have a husband and three daughters. I had carpel tunnel also, they did the operation and decided maybe it was due to the cmt and may not have needed the op. speak to you soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Hi Christin- Welcome to the group. You will get help and support here. My name Is Barbara (Barb) Castonguay. I live in south Florida; originally from Long Island, NY. I was diagnosed with CMT in 1971 at 18yrs. old. I thought the drs. were crazy with the little bit of info they gave to me and my folks. No clue that I inherited from anyone. I did pass it on to both of my children. A daughter and son. I'm doing ok with mine. I've been wearing AFO's what seems like forever(17yrs.) I type with my left forfinger, my right hand fingers bend and only straighten so far. Luckily I don't have pain. Boy, I'm just going on here........ WELCOME again...... Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Welcome , We are the same age. I live in California. Do you know what type you have? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Hi My name is . I have a 5 year old (as of this May) son with PDD_NOS. We live in Cuyahoga County by Hopkins Airport. When we found out our son was Autisic when he was 2 and we thought all our dreams for him were down the drain, (as I am sure many of us did) But with all we have accomplished so far I think his future looks very bright. I want to thank you for starting this group. We all need someone who gets what we are all going through. We are still dealing with potting training issues and if anyone has any suggestions I would be glad to hear what you have to say. Dylan talks (alot) but what he has to say doesn't always make sense to us. He doesn't always stay on topic and pronouns we are still working on those pronouns. We are looking for a speech theropist in our area. Well thanks again for the group look foward to meeting families like ours. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Welcome, ! I'm glad you found us! You are among friends! My son is 6 years old, but he wasn't diagnosed until age 3, so we probably got the diagnosis at the same time as your family. Those few weeks after the diagnosis were very rough for me, but reading your email reminds me of how far my son has come these last 3 years. I am very proud of all his hard work and he has taught me a thing or two!! . I look forward to getting to know you better and sharing our experiences! Marotta P.S. One of my son's SLPs moved to Lakewood. Do you live near there? I don't know if she is currently working with children with autism or not, but I think I could contact her and ask if you are interested.----- Original Message ----- From: Biehl Sent: Monday, May 02, 2005 3:22 PMSubject: [ ] My introductionHi My name is . I have a 5 year old (as of this May) son with PDD_NOS We live in Cuyahoga County by Hopkins Airport. When we found out our son was Autisic when he was 2 and we thought all our dreams for him were down the drain, (as I am sure many of us did) But with all we have accomplished so far I think his future looks very bright. I want to thank you for starting this group. We all need someone who gets what we are all going through. We are still dealing with potting training issues and if anyone has any suggestions I would be glad to hear what you have to say. Dylan talks (alot) but what he has to say doesn't always make sense to us. He doesn't always stay on topic and pronouns we are still working on those pronouns. We are looking for a speech theropist in our area. Well thanks again for the group look foward to meeting families like ours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Dear , I'll see what I can do about the SLP! Yes, Bobby is in Kindergarten, and he loves it very much! He has grown so much this past year! He has a great teacher, one who has a lot of experience and structure in her classroom, but is flexible enough to respect each individual child's needs and learning style. Also, there are some students in his class that accept him as he is so he has a niche. I am hoping that those relationships will be supported and will grow in the next school year. The IEP just before kindergarten was tough! Bobby is high functioning too, but for the MFE, I asked in writing that the school use certain types of diagnostic tests that would tease out where his deficits lie (and his deficits are very significant) and I took my son to a center in Chicago which specializes in hyperlexia (his official diagnosis) where an SLP performed a pragmatic language test. Also, he was overdue for a visit to a neurologist, so we made an appt. and I had her report during the IEP which again highlighted his deficits. During the first kindergarten IEP meeting, the team discussed his services, but because of time restraints, we were unable to come to an agreement. Before the second K IEP meeting, the director of special services did internet research on hyperlexia (what do you think about that? I was impressed), and much of our differences were ironed out before the meeting convened. If you are willing to discuss (either publicly or privately), what tests were done during the MFE? Do you have private evaluations to bring to the IEP meeting? What did these evaluations/tests show? Sometimes, if high functioning children are given only the standard language tests (for example, CELF-Preschool), the team won't have a clear picture of the child's level of functioning and an administrator, who doesn't know the child and sees only the test results, won't want to allocate ever diminishing resources to a child who seems to have caught up with his peers. Maybe I could give you the names of some tests that could help the team evaluate your son's abilities better. Marotta >From: Biehl <angelabiehl@...> >Reply- > >Subject: Re: [ ] My introduction >Date: Tue, 3 May 2005 06:51:20 -0700 (PDT) > >Hi , I live about 10 min away from Lakewood. If you think this >person would be interested in helping Dylan that would be great could you >call? Thanks >Is your son in Kindergarden? We are getting ready for that this year. >Gearing up to write another IEP. I don't know about you but we are having >alittle trouble getting services from our school because Dylan is so High >Functioning. ( as they say) . Any input how to get thru this transition is >greatly apprecated. > >The Marotta Family <marottafamily@...> wrote: >Welcome, ! I'm glad you found us! You are among friends! My son is >6 years old, but he wasn't diagnosed until age 3, so we probably got the >diagnosis at the same time as your family. Those few weeks after the >diagnosis were very rough for me, but reading your email reminds me of how >far my son has come these last 3 years. I am very proud of all his hard >work and he has taught me a thing or two!! . I look forward to getting to >know you better and sharing our experiences! > > Marotta > >P.S. One of my son's SLPs moved to Lakewood. Do you live near there? I >don't know if she is currently working with children with autism or not, >but I think I could contact her and ask if you are interested. >----- Original Message ----- >From: Biehl > >Sent: Monday, May 02, 2005 3:22 PM >Subject: [ ] My introduction > > >Hi My name is . I have a 5 year old (as of this May) son with PDD_NOS >We live in Cuyahoga County by Hopkins Airport. When we found out our son >was Autisic when he was 2 and we thought all our dreams for him were down >the drain, (as I am sure many of us did) But with all we have accomplished >so far I think his future looks very bright. I want to thank you for >starting this group. We all need someone who gets what we are all going >through. We are still dealing with potting training issues and if anyone >has any suggestions I would be glad to hear what you have to say. Dylan >talks (alot) but what he has to say doesn't always make sense to us. He >doesn't always stay on topic and pronouns we are still working on those >pronouns. We are looking for a speech theropist in our area. Well thanks >again for the group look foward to meeting families like ours. > > > > >--------------------------------- > Quote Link to comment Share on other sites More sharing options...
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