Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Hi Lucy, I have back & neck issues; spondylosis, bulging/herinated discs in 4 levels, anular tears in lumbar, osteoarthritis in neck, Si Joint dysfuction, facet joint disease in neck and then just for fun i have fibromyalgia and get migraines 2-6 times a week. It seems like pain has a snowball effect because all my pain started out only in my legs (from the herinated disc in my back). Good luck! Hugs, > > > > Ok. I've never belonged to any type of group like this so I'm a > little confused. So email is how we communicate? Not on the " boards " > or something? lol Forgive me, like I said I am new to this. > > To let you know a little about me and why I joined this group: > > I had C6 & 7 cervical fusion in april of 07. I healed well from this > and went back to work. I was a compliance officer for a govt agency > and drove mostly from business to business. While returning from a > business in June of 07 I was rear ended by a double trailer semi > truck. He skid 210 feet before slamming into me at 65 mph. My C5 was > broken and had to be fused. thank goodness i dont remember any of it. > I also have mild traumatic brain injury. First my neuro had me wait > 3 mos in hard collar to see if would heal. It didnt it broke even > more. So he fused all 4 vertebraes together. I've also had 8 staples > in head, torn tendons in both elbows and slap tear in shoulder. Now I > am having left hip pain and dont know why. > > My neuro thinks i should be " healed " by now cuz he operated and he > has a huge ego as im sure they all do. I was in the hard collar for 4 > mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a > week and dont get much relief at all. So basically just in constant > pain. Between both arms, hip and neck, i can't stand it most days. > I'm sure you all prob have it a lot worse and I'm so sorry for anyone > who is in pain. I'm not use to being in pain. I was going along w/my > normal life and boom! I dont know anyone who has to deal w/anything > like Im going thru. My boyfriend is a great support and has been my > life saver but I think I'm starting to wear him down, > understandably. so any support would be greatly appreciated! > > thank you > > Lucy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 What about therapeutic massage? That helps tons with muscle spasms and tightness. Joi Gizmo, Max, Jazzy, Artemis, Maui, the GC and Painted breeders http://www.toolady.com/www/breeders/joyfulfeathers/index.html Helping Birds Find People Member of the Pyrrhura Breeders Association - Not just for breeders! www.pyrrhurabreedersassociation.com Member of the ASA Check out my new group! ParrotsofWA-Support Re: Re: New here Hi . Thanks for the email. Just hearing from someone who understands is a relief. I'm so sorry to hear about your situation, especially since you have such a young child. My oldest is 24 and in the service and my daughter is 19 and lives w/me but goes to college here locally. So what is your pain from? I seriously doubt my dr will order an MRI (I can have one even w/the rods and screws in my neck) because he thinks he is God and nothing that he did could be wrong. I think he thinks i'm making it up. My PT says that its understandable since I've been thru so much, 2 surgeries in the same place in my neck and in a hard collar for 8 mos. My neck muscles are all just spasm. Well again thanks for the email and am curious what is wrong w/ you? Lucy Re: New here Hi Lucy, Welcome to the group! Yes, we do communicate through email.. I'm so sorry for eveything that has happened to you and for the pain you endure every day!! I too went from being perfectly fine one day to being miserably in pain the next day. It's quite a shocker and very hard to learn to live with. It's been 2 1/2 year for me and I am just at the very beginning stage of acceptance. I still miss the things I used to be able to do very much and then there is a lot of mommy guilt that I can't do the " normal " things with my kids. I have 3 boys, am a single mom too, 2 of my boys are teenagers and my baby will be 4 this August. I feel so bad I can't take him to the park, the zoo, exhibits, fairs, bowling, ect. I have awesome family support and they take him to some fun places but I hate missing out on it! So besides learning to deal with the pain, that's been the hardest part for me. Geeshhh, I'm sorry to go rambling on about myself when my intentions were to answer your post! Well, I am very sorry your neck is still causing you so much pain! I don't think you can get an MRI when you have a fusion but I believe you can get a CT Scan done; maybe your Dr should order one, it is possible something is loose within the fusion causing you pain. I have heard of that happening several times. Best of luck to you and I'm glad you found us!! Some days are pretty quiet around here because we all have daily pain issues but someone will respond to your post as soon as able. Take care! Hugs, > > Ok. I've never belonged to any type of group like this so I'm a little confused. So email is how we communicate? Not on the " boards " or something? lol Forgive me, like I said I am new to this. > To let you know a little about me and why I joined this group: > I had C6 & 7 cervical fusion in april of 07. I healed well from this and went back to work. I was a compliance officer for a govt agency and drove mostly from business to business. While returning from a business in June of 07 I was rear ended by a double trailer semi truck. He skid 210 feet before slamming into me at 65 mph. My C5 was broken and had to be fused. thank goodness i dont remember any of it. I also have mild traumatic brain injury. First my neuro had me wait 3 mos in hard collar to see if would heal. It didnt it broke even more. So he fused all 4 vertebraes together. I've also had 8 staples in head, torn tendons in both elbows and slap tear in shoulder. Now I am having left hip pain and dont know why. > My neuro thinks i should be " healed " by now cuz he operated and he has a huge ego as im sure they all do. I was in the hard collar for 4 mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a week and dont get much relief at all. So basically just in constant pain. Between both arms, hip and neck, i can't stand it most days. I'm sure you all prob have it a lot worse and I'm so sorry for anyone who is in pain. I'm not use to being in pain. I was going along w/my normal life and boom! I dont know anyone who has to deal w/anything like Im going thru. My boyfriend is a great support and has been my life saver but I think I'm starting to wear him down, understandably. so any support would be greatly appreciated! > thank you > Lucy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 What about therapeutic massage? That helps tons with muscle spasms and tightness. Joi Gizmo, Max, Jazzy, Artemis, Maui, the GC and Painted breeders http://www.toolady.com/www/breeders/joyfulfeathers/index.html Helping Birds Find People Member of the Pyrrhura Breeders Association - Not just for breeders! www.pyrrhurabreedersassociation.com Member of the ASA Check out my new group! ParrotsofWA-Support Re: Re: New here Hi . Thanks for the email. Just hearing from someone who understands is a relief. I'm so sorry to hear about your situation, especially since you have such a young child. My oldest is 24 and in the service and my daughter is 19 and lives w/me but goes to college here locally. So what is your pain from? I seriously doubt my dr will order an MRI (I can have one even w/the rods and screws in my neck) because he thinks he is God and nothing that he did could be wrong. I think he thinks i'm making it up. My PT says that its understandable since I've been thru so much, 2 surgeries in the same place in my neck and in a hard collar for 8 mos. My neck muscles are all just spasm. Well again thanks for the email and am curious what is wrong w/ you? Lucy Re: New here Hi Lucy, Welcome to the group! Yes, we do communicate through email.. I'm so sorry for eveything that has happened to you and for the pain you endure every day!! I too went from being perfectly fine one day to being miserably in pain the next day. It's quite a shocker and very hard to learn to live with. It's been 2 1/2 year for me and I am just at the very beginning stage of acceptance. I still miss the things I used to be able to do very much and then there is a lot of mommy guilt that I can't do the " normal " things with my kids. I have 3 boys, am a single mom too, 2 of my boys are teenagers and my baby will be 4 this August. I feel so bad I can't take him to the park, the zoo, exhibits, fairs, bowling, ect. I have awesome family support and they take him to some fun places but I hate missing out on it! So besides learning to deal with the pain, that's been the hardest part for me. Geeshhh, I'm sorry to go rambling on about myself when my intentions were to answer your post! Well, I am very sorry your neck is still causing you so much pain! I don't think you can get an MRI when you have a fusion but I believe you can get a CT Scan done; maybe your Dr should order one, it is possible something is loose within the fusion causing you pain. I have heard of that happening several times. Best of luck to you and I'm glad you found us!! Some days are pretty quiet around here because we all have daily pain issues but someone will respond to your post as soon as able. Take care! Hugs, > > Ok. I've never belonged to any type of group like this so I'm a little confused. So email is how we communicate? Not on the " boards " or something? lol Forgive me, like I said I am new to this. > To let you know a little about me and why I joined this group: > I had C6 & 7 cervical fusion in april of 07. I healed well from this and went back to work. I was a compliance officer for a govt agency and drove mostly from business to business. While returning from a business in June of 07 I was rear ended by a double trailer semi truck. He skid 210 feet before slamming into me at 65 mph. My C5 was broken and had to be fused. thank goodness i dont remember any of it. I also have mild traumatic brain injury. First my neuro had me wait 3 mos in hard collar to see if would heal. It didnt it broke even more. So he fused all 4 vertebraes together. I've also had 8 staples in head, torn tendons in both elbows and slap tear in shoulder. Now I am having left hip pain and dont know why. > My neuro thinks i should be " healed " by now cuz he operated and he has a huge ego as im sure they all do. I was in the hard collar for 4 mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a week and dont get much relief at all. So basically just in constant pain. Between both arms, hip and neck, i can't stand it most days. I'm sure you all prob have it a lot worse and I'm so sorry for anyone who is in pain. I'm not use to being in pain. I was going along w/my normal life and boom! I dont know anyone who has to deal w/anything like Im going thru. My boyfriend is a great support and has been my life saver but I think I'm starting to wear him down, understandably. so any support would be greatly appreciated! > thank you > Lucy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 What about therapeutic massage? That helps tons with muscle spasms and tightness. Joi Gizmo, Max, Jazzy, Artemis, Maui, the GC and Painted breeders http://www.toolady.com/www/breeders/joyfulfeathers/index.html Helping Birds Find People Member of the Pyrrhura Breeders Association - Not just for breeders! www.pyrrhurabreedersassociation.com Member of the ASA Check out my new group! ParrotsofWA-Support Re: Re: New here Hi . Thanks for the email. Just hearing from someone who understands is a relief. I'm so sorry to hear about your situation, especially since you have such a young child. My oldest is 24 and in the service and my daughter is 19 and lives w/me but goes to college here locally. So what is your pain from? I seriously doubt my dr will order an MRI (I can have one even w/the rods and screws in my neck) because he thinks he is God and nothing that he did could be wrong. I think he thinks i'm making it up. My PT says that its understandable since I've been thru so much, 2 surgeries in the same place in my neck and in a hard collar for 8 mos. My neck muscles are all just spasm. Well again thanks for the email and am curious what is wrong w/ you? Lucy Re: New here Hi Lucy, Welcome to the group! Yes, we do communicate through email.. I'm so sorry for eveything that has happened to you and for the pain you endure every day!! I too went from being perfectly fine one day to being miserably in pain the next day. It's quite a shocker and very hard to learn to live with. It's been 2 1/2 year for me and I am just at the very beginning stage of acceptance. I still miss the things I used to be able to do very much and then there is a lot of mommy guilt that I can't do the " normal " things with my kids. I have 3 boys, am a single mom too, 2 of my boys are teenagers and my baby will be 4 this August. I feel so bad I can't take him to the park, the zoo, exhibits, fairs, bowling, ect. I have awesome family support and they take him to some fun places but I hate missing out on it! So besides learning to deal with the pain, that's been the hardest part for me. Geeshhh, I'm sorry to go rambling on about myself when my intentions were to answer your post! Well, I am very sorry your neck is still causing you so much pain! I don't think you can get an MRI when you have a fusion but I believe you can get a CT Scan done; maybe your Dr should order one, it is possible something is loose within the fusion causing you pain. I have heard of that happening several times. Best of luck to you and I'm glad you found us!! Some days are pretty quiet around here because we all have daily pain issues but someone will respond to your post as soon as able. Take care! Hugs, > > Ok. I've never belonged to any type of group like this so I'm a little confused. So email is how we communicate? Not on the " boards " or something? lol Forgive me, like I said I am new to this. > To let you know a little about me and why I joined this group: > I had C6 & 7 cervical fusion in april of 07. I healed well from this and went back to work. I was a compliance officer for a govt agency and drove mostly from business to business. While returning from a business in June of 07 I was rear ended by a double trailer semi truck. He skid 210 feet before slamming into me at 65 mph. My C5 was broken and had to be fused. thank goodness i dont remember any of it. I also have mild traumatic brain injury. First my neuro had me wait 3 mos in hard collar to see if would heal. It didnt it broke even more. So he fused all 4 vertebraes together. I've also had 8 staples in head, torn tendons in both elbows and slap tear in shoulder. Now I am having left hip pain and dont know why. > My neuro thinks i should be " healed " by now cuz he operated and he has a huge ego as im sure they all do. I was in the hard collar for 4 mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a week and dont get much relief at all. So basically just in constant pain. Between both arms, hip and neck, i can't stand it most days. I'm sure you all prob have it a lot worse and I'm so sorry for anyone who is in pain. I'm not use to being in pain. I was going along w/my normal life and boom! I dont know anyone who has to deal w/anything like Im going thru. My boyfriend is a great support and has been my life saver but I think I'm starting to wear him down, understandably. so any support would be greatly appreciated! > thank you > Lucy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 What about therapeutic massage? That helps tons with muscle spasms and tightness. Joi Gizmo, Max, Jazzy, Artemis, Maui, the GC and Painted breeders http://www.toolady.com/www/breeders/joyfulfeathers/index.html Helping Birds Find People Member of the Pyrrhura Breeders Association - Not just for breeders! www.pyrrhurabreedersassociation.com Member of the ASA Check out my new group! ParrotsofWA-Support Re: Re: New here Hi . Thanks for the email. Just hearing from someone who understands is a relief. I'm so sorry to hear about your situation, especially since you have such a young child. My oldest is 24 and in the service and my daughter is 19 and lives w/me but goes to college here locally. So what is your pain from? I seriously doubt my dr will order an MRI (I can have one even w/the rods and screws in my neck) because he thinks he is God and nothing that he did could be wrong. I think he thinks i'm making it up. My PT says that its understandable since I've been thru so much, 2 surgeries in the same place in my neck and in a hard collar for 8 mos. My neck muscles are all just spasm. Well again thanks for the email and am curious what is wrong w/ you? Lucy Re: New here Hi Lucy, Welcome to the group! Yes, we do communicate through email.. I'm so sorry for eveything that has happened to you and for the pain you endure every day!! I too went from being perfectly fine one day to being miserably in pain the next day. It's quite a shocker and very hard to learn to live with. It's been 2 1/2 year for me and I am just at the very beginning stage of acceptance. I still miss the things I used to be able to do very much and then there is a lot of mommy guilt that I can't do the " normal " things with my kids. I have 3 boys, am a single mom too, 2 of my boys are teenagers and my baby will be 4 this August. I feel so bad I can't take him to the park, the zoo, exhibits, fairs, bowling, ect. I have awesome family support and they take him to some fun places but I hate missing out on it! So besides learning to deal with the pain, that's been the hardest part for me. Geeshhh, I'm sorry to go rambling on about myself when my intentions were to answer your post! Well, I am very sorry your neck is still causing you so much pain! I don't think you can get an MRI when you have a fusion but I believe you can get a CT Scan done; maybe your Dr should order one, it is possible something is loose within the fusion causing you pain. I have heard of that happening several times. Best of luck to you and I'm glad you found us!! Some days are pretty quiet around here because we all have daily pain issues but someone will respond to your post as soon as able. Take care! Hugs, > > Ok. I've never belonged to any type of group like this so I'm a little confused. So email is how we communicate? Not on the " boards " or something? lol Forgive me, like I said I am new to this. > To let you know a little about me and why I joined this group: > I had C6 & 7 cervical fusion in april of 07. I healed well from this and went back to work. I was a compliance officer for a govt agency and drove mostly from business to business. While returning from a business in June of 07 I was rear ended by a double trailer semi truck. He skid 210 feet before slamming into me at 65 mph. My C5 was broken and had to be fused. thank goodness i dont remember any of it. I also have mild traumatic brain injury. First my neuro had me wait 3 mos in hard collar to see if would heal. It didnt it broke even more. So he fused all 4 vertebraes together. I've also had 8 staples in head, torn tendons in both elbows and slap tear in shoulder. Now I am having left hip pain and dont know why. > My neuro thinks i should be " healed " by now cuz he operated and he has a huge ego as im sure they all do. I was in the hard collar for 4 mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a week and dont get much relief at all. So basically just in constant pain. Between both arms, hip and neck, i can't stand it most days. I'm sure you all prob have it a lot worse and I'm so sorry for anyone who is in pain. I'm not use to being in pain. I was going along w/my normal life and boom! I dont know anyone who has to deal w/anything like Im going thru. My boyfriend is a great support and has been my life saver but I think I'm starting to wear him down, understandably. so any support would be greatly appreciated! > thank you > Lucy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi group I saw Dr. Toerge thursday at town- he seemed to think I might benefit from a foraminotomy because of this constant (what appears to be nerve impingement ) from my sacrum through my foot. He wants to see what the Neurosurgeon says but since I have adult idiopathic lumbar scolosis on top of my L5 hernated disc and tear at L4 he seems to think the nerve compression is coming from " inside " the curve. I had said maybe a Discetomy might be the thing and he said " or maybe a foraminotomy " . Has anyone had that? If so did it give nerve relief? Honestly I am so tired of having nerve pain shooting from my sacrum to my foot every day - and nite pain that Im ready to try it. I have never had surgery as the Doctors have always thought that my MRI was fairly benign- but the constant symptoms for over 6 months of nerve pain as well as the muscles spasms over the years say differently of the MRI. Thoughts? Thank you, Re: New here Hi Lucy, I have back & neck issues; spondylosis, bulging/herinated discs in 4 levels, annular tears in lumbar, osteoarthritis in neck, Si Joint dysfunction, facet joint disease in neck and then just for fun i have firma and get migraines 2-6 times a week. It seems like pain has a snowball effect because all my pain started out only in my legs (from the herinated disc in my back). Good luck! Hugs, > > > > Ok. I've never belonged to any type of group like this so I'm a > little confused. So email is how we communicate? Not on the " boards " > or something? lol Forgive me, like I said I am new to this. > > To let you know a little about me and why I joined this group: > > I had C6 & 7 cervical fusion in april of 07. I healed well from this > and went back to work. I was a compliance officer for a govt agency > and drove mostly from business to business. While returning from a > business in June of 07 I was rear ended by a double trailer semi > truck. He skid 210 feet before slamming into me at 65 mph. My C5 was > broken and had to be fused. thank goodness i dont remember any of it. > I also have mild traumatic brain injury. First my neuro had me wait > 3 mos in hard collar to see if would heal. It didnt it broke even > more. So he fused all 4 vertebraes together. I've also had 8 staples > in head, torn tendons in both elbows and slap tear in shoulder. Now I > am having left hip pain and dont know why. > > My neuro thinks i should be " healed " by now cuz he operated and he > has a huge ego as im sure they all do. I was in the hard collar for 4 > mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a > week and dont get much relief at all. So basically just in constant > pain. Between both arms, hip and neck, i can't stand it most days. > I'm sure you all prob have it a lot worse and I'm so sorry for anyone > who is in pain. I'm not use to being in pain. I was going along w/my > normal life and boom! I dont know anyone who has to deal w/anything > like Im going thru. My boyfriend is a great support and has been my > life saver but I think I'm starting to wear him down, > understandably. so any support would be greatly appreciated! > > thank you > > Lucy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi group I saw Dr. Toerge thursday at town- he seemed to think I might benefit from a foraminotomy because of this constant (what appears to be nerve impingement ) from my sacrum through my foot. He wants to see what the Neurosurgeon says but since I have adult idiopathic lumbar scolosis on top of my L5 hernated disc and tear at L4 he seems to think the nerve compression is coming from " inside " the curve. I had said maybe a Discetomy might be the thing and he said " or maybe a foraminotomy " . Has anyone had that? If so did it give nerve relief? Honestly I am so tired of having nerve pain shooting from my sacrum to my foot every day - and nite pain that Im ready to try it. I have never had surgery as the Doctors have always thought that my MRI was fairly benign- but the constant symptoms for over 6 months of nerve pain as well as the muscles spasms over the years say differently of the MRI. Thoughts? Thank you, Re: New here Hi Lucy, I have back & neck issues; spondylosis, bulging/herinated discs in 4 levels, annular tears in lumbar, osteoarthritis in neck, Si Joint dysfunction, facet joint disease in neck and then just for fun i have firma and get migraines 2-6 times a week. It seems like pain has a snowball effect because all my pain started out only in my legs (from the herinated disc in my back). Good luck! Hugs, > > > > Ok. I've never belonged to any type of group like this so I'm a > little confused. So email is how we communicate? Not on the " boards " > or something? lol Forgive me, like I said I am new to this. > > To let you know a little about me and why I joined this group: > > I had C6 & 7 cervical fusion in april of 07. I healed well from this > and went back to work. I was a compliance officer for a govt agency > and drove mostly from business to business. While returning from a > business in June of 07 I was rear ended by a double trailer semi > truck. He skid 210 feet before slamming into me at 65 mph. My C5 was > broken and had to be fused. thank goodness i dont remember any of it. > I also have mild traumatic brain injury. First my neuro had me wait > 3 mos in hard collar to see if would heal. It didnt it broke even > more. So he fused all 4 vertebraes together. I've also had 8 staples > in head, torn tendons in both elbows and slap tear in shoulder. Now I > am having left hip pain and dont know why. > > My neuro thinks i should be " healed " by now cuz he operated and he > has a huge ego as im sure they all do. I was in the hard collar for 4 > mo's after the surgery so total of almost 8 mos. I go to PT 2-3xs a > week and dont get much relief at all. So basically just in constant > pain. Between both arms, hip and neck, i can't stand it most days. > I'm sure you all prob have it a lot worse and I'm so sorry for anyone > who is in pain. I'm not use to being in pain. I was going along w/my > normal life and boom! I dont know anyone who has to deal w/anything > like Im going thru. My boyfriend is a great support and has been my > life saver but I think I'm starting to wear him down, > understandably. so any support would be greatly appreciated! > > thank you > > Lucy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Hi CAT,I did not see anybody answer your question so I'll try. I have not been on this list for a very long time either. When I started I asked a very similar question to the one you asked. I did not get much response, so my guess is that there's not too many people on this list that have Asperger's symptoms. It all started for me when my daughter's children were taken away from her temporarily because of her housekeeping. After she underwent a court ordered psychological evaluation, it was determined that she had Asperger's. Her two oldest children have Asperger's as well. I now know why I had so much trouble parenting her when she was growing up. During December and January I underwent Asperger's testing myself. It was determined that I also have an Asperger's diagnosis. Because I spent many years working on family history and genealogy, I'm quite certain that there are four to five generations of our family that had or have definite Asperger's tendencies. So far there are five that have been officially diagnosed. I started out by taking an Asperger's quiz that is available online. http://www.rdos.net/eng/Aspie-quiz.php I found the when I took the quiz multiple times, I got different results. Mainly because I started to be real honest about my past behavior. I started to realize that my Asperger's symptoms peeked at about age 35. I am now 50 and have much fewer of the symptoms. I think that as we mature we develop strategies to fit in. I remember as a child being told, "look me in the eye when I'm speaking to you," over and over again. Eventually I began to look people in the eye, because I did not want to be scolded. Other strategies were developed to get along socially as well. For me I knew that I would be the oldest one in my family to be diagnosed. I knew that the older ones would never go near a therapist, so I felt I had to either prove or disprove the family tendency. It has answered many questions for me. I now know that I wasn't just weird, but there were actual things I was dealing with that were difficult. I hope I have answered some your questions. Welcome to the group.JWA ( ) New here I just joined this group with the hope of getting some answers andsupport for myself and my family.This past year my son, 11 yrs old, was finally diagnosed with AS. Isay finally because the SPED stuff here moves so slowly it takesmonths to get answers from the local school system. Mind you, we livein a moderately large city but the school system is a little outdatedin some of it's practices. I'm a certified teacher, currently notteaching, and have worked in the system and with gifted and AS kids.As an educator, it's frustrating.Next year my son goes into middle school (6th grade) and is startingin a 2X program for AS kids. Here again, how backward things are, ASkids are classified as 2X because gifted is separate. Anyway, we arefinally looking forward to him receiving program services for himspecifically.My question is, since we all know AS has a huge genetic factor, hasanyone going through the process done a reality check and realizedthey have AS too? I did recently and it was a real eye opener! I feelas though I have overcome and outgrown some of the AS traits and itwas more mild in me. I do have a nephew with AS too, undiagnosedthrough his childhood and is barely functioning in the real world atage 28. I think all this thinking and talking about AS has opened a new can ofworms in my family but fortunately, we're dealing with it.Thanks in advance for all your input!CAT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Hi CAT, Since my son (19) has Aspergers, I have thought back to my childhood and felt like I, too, had similar " symptoms " but milder. I do not have Aspergers, but I felt like I had a " bit " of the symptoms and perhaps my son just got the full effect, if that makes any sense, LOL. Or maybe I was just such an " innocent " in the areas that autism/Aspergers affects but somehow I managed to make progress and get past them? Same with his OCD. The rest of us have our OCDish type quirks or whatever, but my Aspie son got the " full effect " here too, his is in the severe range, sigh. May not make sense, only have a minute now so quickly thought and typed! > > I just joined this group with the hope of getting some answers and > support for myself and my family. > This past year my son, 11 yrs old, was finally diagnosed with AS. I > say finally because the SPED stuff here moves so slowly it takes > months to get answers from the local school system. Mind you, we live > in a moderately large city but the school system is a little outdated > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 CAT I only see things in hindsight with our kids and even if I had known them to be tried and true “red flags” of aspergers or autism, each one alone didn’t mean anything. It wasn’t like it all happened simultaneously or was anything eye-catching. Our daughter’s symptoms of autism didn’t become blatantly obvious until she started melting down and stopped talking and that came after countless nights of sleeplessness. She was diagnosed at 2.5. Our son wasn’t diagnosed until just recently and only with ADD – he is 9 now. His aspergers is most apparent to me because my husband and I live with it all the time. However, we haven’ t had a dr and insurance to pay for one to see him enough to dx it. But the school testing showed he has it and they only put on there, “characteristics of one who has aspergers”, so that is what the dr put on there. I am in the process of getting a full dx. The older he gets, the more obvious it is. 1. He feels he is right in his own mind and it is very difficult to show him wrong thinking, 2. he is misunderstood sometimes because his tone is often not matching what he is intending, and 3) he misunderstands social cues often (both 2 and 3 make him paranoid and feeling that others are against him). Or he doesn’t read social cues at all – I feel like I am an interpreter. 4) it is very very difficult to realize when he needs to show sympathy or apologize for something, he also doesn’t want to be sympathized with. This scares me so much because I have seen enough court shows and how the accused people often don’t show any remorse. 5) he is very litteral with words and often corrects the way others say things and has difficulty reading books that uses slang terms (not curse, but phrases or parts of words). He is very unmotivated and is bored if something isn’t constantly going on, but tires so easily. Not coordinated, so sports are boring. However, on the positive, he is honest, loving and fun to have around most of the time. As far as me, I think I am on the spectrum, seems moreso as I have gotten in my 40s and I think I have ADD. my husband has aspie traits. I see others in my family tree who also fit into spectrum characteristics. My fear is if it worsens with each generation and if my son, marries and has kids, are they susceptible..? Regina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Hi Mia, Welcome to the group and I hope you are able to get lots of good information here and feel the support from all these people. I know I have. There are other people on the list here that have been waiting for an official diagnosis. With so few experts in JRA some children just don't get the right help soon enough. Hopefully you find some relief soon! Others here are experts and I'm sure will chime in and give you great advice but from what I know ... bloodwork doesn't really show JRA like it would in an adult. It eliminates other things (like lyme for example) and also monitors the effects of medication on their bodies. Children can positive or negative ANA and be classifies as JRA. I guess I would wonder exactly what they are waiting to see from bloodwork. Welcome and hope you find your answers soon! - Will (pauci 10) New here Hello,My name is Mia. I have a daughter who's name is Sashi. Sashi is 5years old and has been suffering JRA symptoms for about 2 years. Sheis always in pain. The doctors here In Juneau Alaska can not help herand are baffled at what to do for her. I have been sent to Children'sin Seattle and the doctor there are also stumped about Sashi. Sashishows all the signs of JRA but they are unable to detect it in herblood. Her ANA was 1:40 in 2006. The doctors have put her onNaperson and this seems to help her a little bit. They would like forme to give it to her twice a day, but it causes her to have blood inher urine, so i give it to her sparingly. My poor little girl swells and can not get up some mornings. However, since she has been in pain most of her life, she deals withthe pain very well. She will try and do everything her friends do,but we pay for it every night...when she is in so much pain she cannot sleep.I hope that i will be able to chat with all of you and also be ableto get ideas, how to ease her pain.Love,mia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Hi Mia, Like said - the ANA and RF are often negative in children with JRA. In addition to the frequent blood work to test for the side affects of the medications, there are lab tests that are inflammatory markers, such as CRP and ESR (aka sed rate) these can be elevated in children with JRA, particularly when flaring. My son went two years with these and other tests way out of the normal range. However, the inflammatory markers indicate inflammation or infection (depending on other lab tests) - not JRA, so they can indicate a huge variety of illness, and sometimes just a recent flu or minor illness. All of this compounds the diagnostic process. You really need to have your child evaluated by someone who knows JRA - and the difference in diagnosing and treating it. Easier said than done. Considering your location, perhaps you could speak to your pediatrician and ask them to contact a pediatric rheumatologist and do a phone consult? Just a thought. Good luck, I am sorry to hear of your child continuing to suffer. Val Rob's Mom (10,systemic) Re: New here Hi Mia, Welcome to the group and I hope you are able to get lots of good information here and feel the support from all these people. I know I have. There are other people on the list here that have been waiting for an official diagnosis. With so few experts in JRA some children just don't get the right help soon enough. Hopefully you find some relief soon! Others here are experts and I'm sure will chime in and give you great advice but from what I know ... bloodwork doesn't really show JRA like it would in an adult. It eliminates other things (like lyme for example) and also monitors the effects of medication on their bodies. Children can positive or negative ANA and be classifies as JRA. I guess I would wonder exactly what they are waiting to see from bloodwork. Welcome and hope you find your answers soon! - Will (pauci 10) New here Hello, My name is Mia. I have a daughter who's name is Sashi. Sashi is 5 years old and has been suffering JRA symptoms for about 2 years. She is always in pain. The doctors here In Juneau Alaska can not help her and are baffled at what to do for her. I have been sent to Children's in Seattle and the doctor there are also stumped about Sashi. Sashi shows all the signs of JRA but they are unable to detect it in her blood. Her ANA was 1:40 in 2006. The doctors have put her on Naperson and this seems to help her a little bit. They would like for me to give it to her twice a day, but it causes her to have blood in her urine, so i give it to her sparingly. My poor little girl swells and can not get up some mornings. However, since she has been in pain most of her life, she deals with the pain very well. She will try and do everything her friends do, but we pay for it every night...when she is in so much pain she can not sleep. I hope that i will be able to chat with all of you and also be able to get ideas, how to ease her pain. Love, mia Stay informed, get connected and more with AOL on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Dear Val, I have been down to children's in Seattle, WA. We saw two JRA docs there. Each one didn't seem to know what to do with sashi. When they saw her she looked fine, because she was not having a flare-up. I did however, bring tons of photos with me and i showed all of them to the docs. One of the doctor wants us to come down every time she flares. My husband actually laughed in her face because it is about 2000 dollars to fly down each time and he said that we couldn't come down once a week....this is just not reasonable. Once he did this...she seemed to get quite and not really want to do anything. I hope that i can see another doctor next time. I think our biggest problem is not knowing which doctor is the best in this field. I hate to say it, but all the ones we have worked with have all been mediocre.Love,MiaMia is cute Ian 9 years old Sashi 5 From: carneyval@... <carneyval@...>Subject: Re: New here Date: Saturday, June 7, 2008, 6:22 AM Hi Mia, Like said - the ANA and RF are often negative in children with JRA. In addition to the frequent blood work to test for the side affects of the medications, there are lab tests that are inflammatory markers, such as CRP and ESR (aka sed rate) these can be elevated in children with JRA, particularly when flaring. My son went two years with these and other tests way out of the normal range. However, the inflammatory markers indicate inflammation or infection (depending on other lab tests) - not JRA, so they can indicate a huge variety of illness, and sometimes just a recent flu or minor illness. All of this compounds the diagnostic process. You really need to have your child evaluated by someone who knows JRA - and the difference in diagnosing and treating it. Easier said than done. Considering your location, perhaps you could speak to your pediatrician and ask them to contact a pediatric rheumatologist and do a phone consult? Just a thought. Good luck, I am sorry to hear of your child continuing to suffer. Val Rob's Mom (10,systemic) Re: New here Hi Mia, Welcome to the group and I hope you are able to get lots of good information here and feel the support from all these people. I know I have. There are other people on the list here that have been waiting for an official diagnosis. With so few experts in JRA some children just don't get the right help soon enough. Hopefully you find some relief soon! Others here are experts and I'm sure will chime in and give you great advice but from what I know ... bloodwork doesn't really show JRA like it would in an adult. It eliminates other things (like lyme for example) and also monitors the effects of medication on their bodies. Children can positive or negative ANA and be classifies as JRA. I guess I would wonder exactly what they are waiting to see from bloodwork. Welcome and hope you find your answers soon! - Will (pauci 10) New here Hello, My name is Mia. I have a daughter who's name is Sashi. Sashi is 5 years old and has been suffering JRA symptoms for about 2 years. She is always in pain. The doctors here In Juneau Alaska can not help her and are baffled at what to do for her. I have been sent to Children's in Seattle and the doctor there are also stumped about Sashi. Sashi shows all the signs of JRA but they are unable to detect it in her blood. Her ANA was 1:40 in 2006. The doctors have put her on Naperson and this seems to help her a little bit. They would like for me to give it to her twice a day, but it causes her to have blood in her urine, so i give it to her sparingly. My poor little girl swells and can not get up some mornings. However, since she has been in pain most of her life, she deals with the pain very well. She will try and do everything her friends do, but we pay for it every night...when she is in so much pain she can not sleep. I hope that i will be able to chat with all of you and also be able to get ideas, how to ease her pain. Love, mia Stay informed, get connected and more with AOL on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Thank you ! I am very happy to have found this group. I am hoping that i can learn a lot so that i can challenge sashi's doctor...who seems to think i am a hypochondriac. Love,miaMia is cute Ian 9 years old Sashi 5 From: Van Essen <crvanessen@...>Subject: Re: New here Date: Saturday, June 7, 2008, 5:17 AM Hi Mia, Welcome to the group and I hope you are able to get lots of good information here and feel the support from all these people. I know I have. There are other people on the list here that have been waiting for an official diagnosis. With so few experts in JRA some children just don't get the right help soon enough. Hopefully you find some relief soon! Others here are experts and I'm sure will chime in and give you great advice but from what I know ... bloodwork doesn't really show JRA like it would in an adult. It eliminates other things (like lyme for example) and also monitors the effects of medication on their bodies. Children can positive or negative ANA and be classifies as JRA. I guess I would wonder exactly what they are waiting to see from bloodwork. Welcome and hope you find your answers soon! - Will (pauci 10) New here Hello,My name is Mia. I have a daughter who's name is Sashi. Sashi is 5years old and has been suffering JRA symptoms for about 2 years. Sheis always in pain. The doctors here In Juneau Alaska can not help herand are baffled at what to do for her. I have been sent to Children'sin Seattle and the doctor there are also stumped about Sashi. Sashishows all the signs of JRA but they are unable to detect it in herblood. Her ANA was 1:40 in 2006. The doctors have put her onNaperson and this seems to help her a little bit. They would like forme to give it to her twice a day, but it causes her to have blood inher urine, so i give it to her sparingly. My poor little girl swells and can not get up some mornings. However, since she has been in pain most of her life, she deals withthe pain very well. She will try and do everything her friends do,but we pay for it every night...when she is in so much pain she cannot sleep.I hope that i will be able to chat with all of you and also be ableto get ideas, how to ease her pain.Love,mia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Hi, Mia and welcome. I am trying to catch up with the posts and just wanted to say that I think it is great that you are keeping a record with the pictures. Also, writing down dates and what is going on with your daughter is also helpful. It does sound like you do need to get to a pediatric rheumatologist to have her evaluated. I take it that when you say you saw JRA drs that is what you meant? I am not sure who is the best in your part of the country, but there is a list of doctors here on the site. Perhaps checking that out might help? Have the drs suggested using anything else besides an anti inflammatory to help her symptoms? I am not sure exactly what they are looking for in her blood – my son was diagnosed based on the physical exam. The dr said it was arthritis before she even requested blood work. Good luck and please keep us posted as to how your daughter is doing. Michele ( 21, spondy) From: [mailto: ] On Behalf Of mia league Sent: Sunday, June 08, 2008 12:26 AM Subject: Re: New here Dear Val, I have been down to children's in Seattle, WA. We saw two JRA docs there. Each one didn't seem to know what to do with sashi. When they saw her she looked fine, because she was not having a flare-up. I did however, bring tons of photos with me and i showed all of them to the docs. One of the doctor wants us to come down every time she flares. My husband actually laughed in her face because it is about 2000 dollars to fly down each time and he said that we couldn't come down once a week....this is just not reasonable. Once he did this...she seemed to get quite and not really want to do anything. I hope that i can see another doctor next time. I think our biggest problem is not knowing which doctor is the best in this field. I hate to say it, but all the ones we have worked with have all been mediocre. Love, Mia Mia is cute Ian 9 years old Sashi 5 From: carneyvalaol <carneyvalaol> Subject: Re: New here Date: Saturday, June 7, 2008, 6:22 AM Hi Mia, Like said - the ANA and RF are often negative in children with JRA. In addition to the frequent blood work to test for the side affects of the medications, there are lab tests that are inflammatory markers, such as CRP and ESR (aka sed rate) these can be elevated in children with JRA, particularly when flaring. My son went two years with these and other tests way out of the normal range. However, the inflammatory markers indicate inflammation or infection (depending on other lab tests) - not JRA, so they can indicate a huge variety of illness, and sometimes just a recent flu or minor illness. All of this compounds the diagnostic process. You really need to have your child evaluated by someone who knows JRA - and the difference in diagnosing and treating it. Easier said than done. Considering your location, perhaps you could speak to your pediatrician and ask them to contact a pediatric rheumatologist and do a phone consult? Just a thought. Good luck, I am sorry to hear of your child continuing to suffer. Val Rob's Mom (10,systemic) New here Hello, My name is Mia. I have a daughter who's name is Sashi. Sashi is 5 years old and has been suffering JRA symptoms for about 2 years. She is always in pain. The doctors here In Juneau Alaska can not help her and are baffled at what to do for her. I have been sent to Children's in Seattle and the doctor there are also stumped about Sashi. Sashi shows all the signs of JRA but they are unable to detect it in her blood. Her ANA was 1:40 in 2006. The doctors have put her on Naperson and this seems to help her a little bit. They would like for me to give it to her twice a day, but it causes her to have blood in her urine, so i give it to her sparingly. My poor little girl swells and can not get up some mornings. However, since she has been in pain most of her life, she deals with the pain very well. She will try and do everything her friends do, but we pay for it every night...when she is in so much pain she can not sleep. I hope that i will be able to chat with all of you and also be able to get ideas, how to ease her pain. Love, mia Stay informed, get connected and more with AOL on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Jill, I read your post and just had to respond. My ds just turned 7 and has Asperger's. It was actually his K-4 teacher who suggested that Gage be tested for various things. Thankfully we went straight to Hershey (we live in PA) and got the diagnosis when he was 4. We struggle with the same things as your son. When Gage thinks something is funny, he will just keep it up no matter how many people tell him to stop or not to do it. I would be thrilled if he could learn to listen to "stop" and "no". I would suggest that if there is a Children's Hosp anywhere even remotely close that it would be worth a trip. Depending on what state you live in (which state?) the specialist that you would see would be able to guide you and would know the special education laws and would get you started in the right direction. I have talked to others in our support group and alot of them just went to the local Dr.s and it took them a long time and several Dr.s to get the right diagnosis. It is very hard to watch your child and see how others react to him. The girls in Gage's class for the most part have mothered Gage and tried to help him. The boys were very hard for Gage to deal with mostly because he wouldn't stop doing whatever it was that they didn't like. Gage gets along with older kids though. Gage on one hand seems so very intelligent and yet again he is in special education class because he can't function in the normal classroom because of the activity and noise. He has an academic aide with him and has made great strides in K-5 learning support. Gage also is like your son in that he goes through obsessions. For over a year all he would talk about was living in the jungle and flying into a volcano and he periodically reverts back to this one. He also has imaginary friends and sometimes we don't know if he knows the difference between his imagination and reality. But he has a wonderful personality and everyone that knows him loves him. I would be happy to talk with you anytime Jill. I know how scared we were when we got the diagnosis. It never occured to us that Gage was in anyway autistic. I hope my words help you out. Sincerely, Sue From: vangruensvenji <vangruensvenji@...>Subject: ( ) New here Date: Thursday, June 19, 2008, 4:42 PM Just wanted to introduce myself. I'm Jill and my ds is Peyton. Hejust turned six and this has been a roller coaster ride this pastyear. We always thought Peyton had ADHD because of his hyperactivity.We never considered ASD because from my limited and ignorantinformation I thought autistic kids were non communicative and sat ina a chair rocking to and fro all day. Initially when ASD wassuggested to me, I was defensive and in denial. The more I read aboutit, the more I realized that it fits my son to a Tee. I'm not sure ifPeyton has Aspergers yet. He is definitely high functioning. Currently we just have an "educational diagnosis for him. We arewaiting for a meeting with a developmental pediatrician but are so farjust having trouble getting anyone to return our calls. Peyton's primary area of difficulty is socially. He loves playingwith other kids, but struggles with the give and take of socialinteractions and is typically clueless with social nuances and oftendoesn't get it when friends are irritated etc. He has a few obsessiveinterests. Right now he is big-time into storms and tornadoes. Thishas been his #1 interest for over a year now. Prior to this it wasairplanes. I'm looking to talk to others with kids that are similar in age toPeyton and are going through some of the same things. I am oftentimes sad for him. I want him to find a niche so badly. I hope hewill. If only he could have 1 really close friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Jill I started to type a reply to you full of little wise words, and little things my son (5, AS) has achieved, and then stopped. The basic line is, I really understand what you're going through when you feel sad for your son. I find the social aspect hard too, the hardest thing of all... I so relate to you wanting your son to have one special friend, and to the social difficulties he has. Please know that there are many people here that will understand, and who will listen and offer empathy and kindness. Our kids are amazing. They just have a different set of difficulties to most other children - they also have a whole heap of wonderful trait that so-called 'normal' kids miss out on. I wish you love and joy from your child, and hope you find some help here - I have, just by lurking for a year or so, and posting occasionally. With love > > Just wanted to introduce myself. I'm Jill and my ds is Peyton. He > just turned six and this has been a roller coaster ride this past > year. We always thought Peyton had ADHD because of his hyperactivity. > We never considered ASD because from my limited and ignorant > information I thought autistic kids were non communicative and sat in > a a chair rocking to and fro all day. Initially when ASD was > suggested to me, I was defensive and in denial. The more I read about > it, the more I realized that it fits my son to a Tee. I'm not sure if > Peyton has Aspergers yet. He is definitely high functioning. > Currently we just have an " educational diagnosis for him. We are > waiting for a meeting with a developmental pediatrician but are so far > just having trouble getting anyone to return our calls. > > Peyton's primary area of difficulty is socially. He loves playing > with other kids, but struggles with the give and take of social > interactions and is typically clueless with social nuances and often > doesn't get it when friends are irritated etc. He has a few obsessive > interests. Right now he is big-time into storms and tornadoes. This > has been his #1 interest for over a year now. Prior to this it was > airplanes. > > I'm looking to talk to others with kids that are similar in age to > Peyton and are going through some of the same things. I am often > times sad for him. I want him to find a niche so badly. I hope he > will. If only he could have 1 really close friend. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 It is great that you are working hard to help him at an early age. That will make a huge difference. I have a 6 year old son going on 7 who is diagnosed AS, bipolar and ADHD. My sons obsessions right now are maps and computer games. He seems to prefer the educational ones. Have you looked into any social skills training for your son? I have heard it is really good for the kids. My son isn't in any but he could use it. Right now he is in speec, counseling, etc so there isn't any time but I plan on it later. My son had a lot of friends at school but we pulled him out for online schooling because his needs were not being met. Good luck with everything. ( ) New here Just wanted to introduce myself. I'm Jill and my ds is Peyton. Hejust turned six and this has been a roller coaster ride this pastyear. We always thought Peyton had ADHD because of his hyperactivity.We never considered ASD because from my limited and ignorantinformation I thought autistic kids were non communicative and sat ina a chair rocking to and fro all day. Initially when ASD wassuggested to me, I was defensive and in denial. The more I read aboutit, the more I realized that it fits my son to a Tee. I'm not sure ifPeyton has Aspergers yet. He is definitely high functioning. Currently we just have an "educational diagnosis for him. We arewaiting for a meeting with a developmental pediatrician but are so farjust having trouble getting anyone to return our calls. Peyton's primary area of difficulty is socially. He loves playingwith other kids, but struggles with the give and take of socialinteractions and is typically clueless with social nuances and oftendoesn't get it when friends are irritated etc. He has a few obsessiveinterests. Right now he is big-time into storms and tornadoes. Thishas been his #1 interest for over a year now. Prior to this it wasairplanes. I'm looking to talk to others with kids that are similar in age toPeyton and are going through some of the same things. I am oftentimes sad for him. I want him to find a niche so badly. I hope hewill. If only he could have 1 really close friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 We finally got an IEP at the end of this school year, and part of next year's goals is social skills training. I can't wait. They are putting together a " lunch bunch " to help him get acquainted with kids (he's also in a new school) and will be working with him 1 on 1 and shadowing him on the playground. > > It is great that you are working hard to help him at an early age. That will make a huge difference. I have a 6 year old son going on 7 who is diagnosed AS, bipolar and ADHD. My sons obsessions right now are maps and computer games. He seems to prefer the educational ones. > Have you looked into any social skills training for your son? I have heard it is really good for the kids. My son isn't in any but he could use it. Right now he is in speec, counseling, etc so there isn't any time but I plan on it later. My son had a lot of friends at school but we pulled him out for online schooling because his needs were not being met. Good luck with everything. > > > ( ) New here > > > Just wanted to introduce myself. I'm Jill and my ds is Peyton. He > just turned six and this has been a roller coaster ride this past > year. We always thought Peyton had ADHD because of his hyperactivity. > We never considered ASD because from my limited and ignorant > information I thought autistic kids were non communicative and sat in > a a chair rocking to and fro all day. Initially when ASD was > suggested to me, I was defensive and in denial. The more I read about > it, the more I realized that it fits my son to a Tee. I'm not sure if > Peyton has Aspergers yet. He is definitely high functioning. > Currently we just have an " educational diagnosis for him. We are > waiting for a meeting with a developmental pediatrician but are so far > just having trouble getting anyone to return our calls. > > Peyton's primary area of difficulty is socially. He loves playing > with other kids, but struggles with the give and take of social > interactions and is typically clueless with social nuances and often > doesn't get it when friends are irritated etc. He has a few obsessive > interests. Right now he is big-time into storms and tornadoes. This > has been his #1 interest for over a year now. Prior to this it was > airplanes. > > I'm looking to talk to others with kids that are similar in age to > Peyton and are going through some of the same things.. I am often > times sad for him. I want him to find a niche so badly. I hope he > will. If only he could have 1 really close friend. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Jill, Welcome! I am pretty new too! My son is 12 and was just dx this year. In 3rd grade they said it was ADHD and then PDD. I not totally convinced but I do see a lot of traits. I really don't care what they DX my son as long as he get the help he needs at home and at school. Social Skills are a very, very big issue. My heart goes out to you adn your son because this happens to my son all the time. We have good weeks and then bad ones. Things seems to be going really well with his friends and then they are nasty and leave him out. It is so difficult watching this as a parent. I was told not to get to involved with his friends issues ....otherwise the kids will have another thing to pick on him for. But, I do talk to him all the time. I watch and listen when he and friends are here at the house and that is most of the time. He doesn't get it when he begins to be annoying or loud or anxious. Alot of my son's problems are due to Anxiety. Right now he has a pretty good friend and they have been "hanging" with each other. Today on the phone he was a little mean to my son and would not let him join his clan on ruin scape (computer game all the kids play). My son felt hurt and asked him point blank ...why couldn't he be in the clan. LOL. I told my son he needs to play a little hard to get...not always be there...or beg to join the clan...or join another one. He was sad and depressed and we finally told him to get off for a while and let his friend try and find him. My son fell asleep..he was so tired...and about 45 min. later his friend called. Kids tease each other and our children don't know how to take it...they take it literally. I try to explain this to him mature friends so they understand where he is coming from. And, sometimes, I tell him he needs a break from all of them. It is so sad. I remember his friends running away from him and leaving him out. I just wanted to cry. Hang in there. Keep writing and reading. It helps. I have learned so much from eveyrone else. I even brought up a lot of the things I learned to school such as Sensory Integration which my son definitly has as well as motor skills difficulties. Role Play with your son. This helps a lot too! Keep the chin up....you have a wonderful child! A very special gift! Jan Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: vangruensvenji <vangruensvenji@...>Subject: ( ) New here Date: Thursday, June 19, 2008, 4:42 PM Just wanted to introduce myself. I'm Jill and my ds is Peyton. Hejust turned six and this has been a roller coaster ride this pastyear. We always thought Peyton had ADHD because of his hyperactivity.We never considered ASD because from my limited and ignorantinformation I thought autistic kids were non communicative and sat ina a chair rocking to and fro all day. Initially when ASD wassuggested to me, I was defensive and in denial. The more I read aboutit, the more I realized that it fits my son to a Tee. I'm not sure ifPeyton has Aspergers yet. He is definitely high functioning. Currently we just have an "educational diagnosis for him. We arewaiting for a meeting with a developmental pediatrician but are so farjust having trouble getting anyone to return our calls. Peyton's primary area of difficulty is socially. He loves playingwith other kids, but struggles with the give and take of socialinteractions and is typically clueless with social nuances and oftendoesn't get it when friends are irritated etc. He has a few obsessiveinterests. Right now he is big-time into storms and tornadoes. Thishas been his #1 interest for over a year now. Prior to this it wasairplanes. I'm looking to talk to others with kids that are similar in age toPeyton and are going through some of the same things. I am oftentimes sad for him. I want him to find a niche so badly. I hope hewill. If only he could have 1 really close friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 I found my son always had the worst times when the kids where unsupervised...lunch, recess and bus ride! Now my son rides a smaller bus...so much better! No more teasing, bulling, etc. And, he has a wonderful caring bus driver. And, of course, they no longer have recess. Best of luck! Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: vangruensvenji <vangruensvenji@...>Subject: Re: ( ) New here Date: Thursday, June 19, 2008, 6:58 PM We finally got an IEP at the end of this school year, and part of nextyear's goals is social skills training. I can't wait. They areputting together a "lunch bunch" to help him get acquainted with kids(he's also in a new school) and will be working with him 1 on 1 andshadowing him on the playground.>> It is great that you are working hard to help him at an early age.That will make a huge difference. I have a 6 year old son going on 7who is diagnosed AS, bipolar and ADHD. My sons obsessions right noware maps and computer games. He seems to prefer the educational ones. > Have you looked into any social skills training for your son? I haveheard it is really good for the kids. My son isn't in any but he coulduse it. Right now he is in speec, counseling, etc so there isn't anytime but I plan on it later. My son had a lot of friends at school butwe pulled him out for online schooling because his needs were notbeing met. Good luck with everything.> > > ( ) New here> > > Just wanted to introduce myself. I'm Jill and my ds is Peyton. He> just turned six and this has been a roller coaster ride this past> year. We always thought Peyton had ADHD because of his hyperactivity.> We never considered ASD because from my limited and ignorant> information I thought autistic kids were non communicative and sat in> a a chair rocking to and fro all day. Initially when ASD was> suggested to me, I was defensive and in denial. The more I read about> it, the more I realized that it fits my son to a Tee. I'm not sure if> Peyton has Aspergers yet. He is definitely high functioning. > Currently we just have an "educational diagnosis for him. We are> waiting for a meeting with a developmental pediatrician but are so far> just having trouble getting anyone to return our calls. > > Peyton's primary area of difficulty is socially. He loves playing> with other kids, but struggles with the give and take of social> interactions and is typically clueless with social nuances and often> doesn't get it when friends are irritated etc. He has a few obsessive> interests. Right now he is big-time into storms and tornadoes. This> has been his #1 interest for over a year now. Prior to this it was> airplanes. > > I'm looking to talk to others with kids that are similar in age to> Peyton and are going through some of the same things.. I am often> times sad for him. I want him to find a niche so badly. I hope he> will. If only he could have 1 really close friend.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Welcome to our group! Feel free to join in whenever you like! RoxannaAutism Happens ( ) New here Just wanted to introduce myself. I'm Jill and my ds is Peyton. Hejust turned six and this has been a roller coaster ride this pastyear. We always thought Peyton had ADHD because of his hyperactivity.We never considered ASD because from my limited and ignorantinformation I thought autistic kids were non communicative and sat ina a chair rocking to and fro all day. Initially when ASD wassuggested to me, I was defensive and in denial. The more I read aboutit, the more I realized that it fits my son to a Tee. I'm not sure ifPeyton has Aspergers yet. He is definitely high functioning. Currently we just have an "educational diagnosis for him. We arewaiting for a meeting with a developmental pediatrician but are so farjust having trouble getting anyone to return our calls. Peyton's primary area of difficulty is socially. He loves playingwith other kids, but struggles with the give and take of socialinteractions and is typically clueless with social nuances and oftendoesn't get it when friends are irritated etc. He has a few obsessiveinterests. Right now he is big-time into storms and tornadoes. Thishas been his #1 interest for over a year now. Prior to this it wasairplanes. I'm looking to talk to others with kids that are similar in age toPeyton and are going through some of the same things. I am oftentimes sad for him. I want him to find a niche so badly. I hope hewill. If only he could have 1 really close friend. No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.4.0/1509 - Release Date: 6/19/2008 8:00 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Sue, Thanks for the reply. We are trying to get into UW hospital in Madison. They have 2 developmental pediatricians there. I have filled out the paper work and sent it back (in May) and haven't had a phone call back. I've called there 2x and have yet to have anyone return my phone calls. It's frustrating, because I'm just trying to make the appointment. I know it takes months to see the doctors and it is apparently taking months to make the appointment too. Have you tried any dietary changes with your son? I briefly tried the GFCF diet but found the GF part really hard. I can't seem to find good bread. I've heard a lot about enzymes too, but don't really know where to begin there. Anyway, I'm glad I sought out this group. I belong to another Mom's board and there is a small group of mothers there with children on the spectrum, but most of the kids are younger (2-3) and most have more severe forms of autism and almost all of the moms are using DAN!'s and doing extensive therapy I don't understand, so I find it hard to keep up and fit in. > > From: vangruensvenji <vangruensvenji@...> > Subject: ( ) New here > > Date: Thursday, June 19, 2008, 4:42 PM > > > > > > > Just wanted to introduce myself. I'm Jill and my ds is Peyton. He > just turned six and this has been a roller coaster ride this past > year. We always thought Peyton had ADHD because of his hyperactivity. > We never considered ASD because from my limited and ignorant > information I thought autistic kids were non communicative and sat in > a a chair rocking to and fro all day. Initially when ASD was > suggested to me, I was defensive and in denial. The more I read about > it, the more I realized that it fits my son to a Tee. I'm not sure if > Peyton has Aspergers yet. He is definitely high functioning. > Currently we just have an " educational diagnosis for him. We are > waiting for a meeting with a developmental pediatrician but are so far > just having trouble getting anyone to return our calls. > > Peyton's primary area of difficulty is socially. He loves playing > with other kids, but struggles with the give and take of social > interactions and is typically clueless with social nuances and often > doesn't get it when friends are irritated etc. He has a few obsessive > interests. Right now he is big-time into storms and tornadoes. This > has been his #1 interest for over a year now. Prior to this it was > airplanes. > > I'm looking to talk to others with kids that are similar in age to > Peyton and are going through some of the same things. I am often > times sad for him. I want him to find a niche so badly. I hope he > will. If only he could have 1 really close friend. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Jan, It's great to hear that your son has friends. I teach high school and have had experience with 3 children with Aspergers over the 6 years I've taught. All of them struggled socially and virtually had no friends. The one boy I had in my class this past year finally started making some friends and his parents commented to me at Parent=teacher conferences that it was the first time he's had friends. I am just so worried that my son will experience this social isolation. Thankfully they are going to do some social training with him in 1st grade and set up some friend groups and I hope to God that helps! Anyway, it did make me feel better to know that friendships are possible Jill > > From: vangruensvenji <vangruensvenji@...> > Subject: ( ) New here > > Date: Thursday, June 19, 2008, 4:42 PM > > > > > > > Just wanted to introduce myself. I'm Jill and my ds is Peyton. He > just turned six and this has been a roller coaster ride this past > year. We always thought Peyton had ADHD because of his hyperactivity. > We never considered ASD because from my limited and ignorant > information I thought autistic kids were non communicative and sat in > a a chair rocking to and fro all day. Initially when ASD was > suggested to me, I was defensive and in denial. The more I read about > it, the more I realized that it fits my son to a Tee. I'm not sure if > Peyton has Aspergers yet. He is definitely high functioning. > Currently we just have an " educational diagnosis for him. We are > waiting for a meeting with a developmental pediatrician but are so far > just having trouble getting anyone to return our calls. > > Peyton's primary area of difficulty is socially. He loves playing > with other kids, but struggles with the give and take of social > interactions and is typically clueless with social nuances and often > doesn't get it when friends are irritated etc. He has a few obsessive > interests. Right now he is big-time into storms and tornadoes. This > has been his #1 interest for over a year now. Prior to this it was > airplanes. > > I'm looking to talk to others with kids that are similar in age to > Peyton and are going through some of the same things. I am often > times sad for him. I want him to find a niche so badly. I hope he > will. If only he could have 1 really close friend. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Jill, You are teacher too?! And, work with children with Aspergers? Wow! That I think would help you even more! I think it is great that you already know your son has Aspergers. I look back and see all the signs...and no one ever told me or mentioned anything to me. His kindergarten teacher should have realized something....I see it all now. I would have thought she'd had seen the signs of ADHD. In 3rd grade, out of fustration, I started reading this book my boss who was a licensed psychologist recommended to family with a lot of problems with their children. She basically recommended this one chapter for them to read. Well, since I felt my house was too chotic too...I began reading. But I started in the beginning...the book was called From Caosis to Calm. Well let me tell you that opened my eyes. I talked to my boss, see gave me rating sheets to give to 's teacher and we did them at home. When the teacher got it, she said, oh thank goodness, I noticed it the first day of school....now it was October. Huh? So, no one was going to say anything...just let him struggle in school??? Anyways, enough of that...he was tested and dx as ADHD. Then this Fall (6th grade) we started getting "wrap around" service thru the Access Card (PA state). We work with an agency who had they Psychiatrist evaluate him and dx him PDD NOS. Then at the next evaluation (4 months later) he was DX as AS. I was a little shocked. Not in total agreement but I don't really care what they DX him as...just as long as he gets the services and assistance that he needs. I see several things in him...ADHD, Anxiety (big time), AS (no social skills), PDD (very immature for his age), Sensory Issues (too many), Obsessions (can't drop a subject until in his mind he totally understands it), No compulsion controls (when angry will throw or break things), Anger issues, Motor skill problems (major and fine). Wow, now that I think about all this what he has to deal with ! I think I would be overloaded too! I think our kids do better with other kids that don't fit in well either. His 2 friends are not in the "in crowd" as you would say. His one friend is tiny, quiet and sort of meekish. His other friend is one year old but not well liked by many of his peers. So, they are all a little different. and his friends are all aware of his "issues" and I think it helps them understand and cope better with him especially when he starts to get "on their nerves" or starts becoming annoying. There is hope. Just keep an eye on your son as he is still very young and kids that age don't understand "being different". Make playdates at your home and keep your eyes and ears open at all time. Role play with you son. But, now that is 12 going on 13, his mobile therapist told me I have to let him fight his own "battles"....I have to step back and let him figure things out. I know she is right but it is hard....I just try to give him advice! And, always always pick up on the Positive thrings and emphasize all the good things in him. My son is always saying he is "stupid" and I tell him that he is very smart and list things he is good in. He can't spell for beans and is not a good read (although that is improving) ...I always tell him that there are a lot of people who can't spell and that is why we have dictonaries and spell check in the computer! Anyway, email me any time. I like speaking with you. Hope I helped. jrushen@... Jan R Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: vangruensvenji <vangruensvenji@...>Subject: Re: ( ) New here Date: Friday, June 20, 2008, 9:19 AM Jan,It's great to hear that your son has friends. I teach high school andhave had experience with 3 children with Aspergers over the 6 yearsI've taught. All of them struggled socially and virtually had nofriends. The one boy I had in my class this past year finally startedmaking some friends and his parents commented to me at Parent=teacherconferences that it was the first time he's had friends. I am just soworried that my son will experience this social isolation. Thankfullythey are going to do some social training with him in 1st grade andset up some friend groups and I hope to God that helps! Anyway, itdid make me feel better to know that friendships are possible :)Jill> > From: vangruensvenji <vangruensvenji@ ...>> Subject: ( ) New here> > Date: Thursday, June 19, 2008, 4:42 PM> > > > > > > Just wanted to introduce myself. I'm Jill and my ds is Peyton. He> just turned six and this has been a roller coaster ride this past> year. We always thought Peyton had ADHD because of his hyperactivity.> We never considered ASD because from my limited and ignorant> information I thought autistic kids were non communicative and sat in> a a chair rocking to and fro all day. Initially when ASD was> suggested to me, I was defensive and in denial. The more I read about> it, the more I realized that it fits my son to a Tee. I'm not sure if> Peyton has Aspergers yet. He is definitely high functioning. > Currently we just have an "educational diagnosis for him. We are> waiting for a meeting with a developmental pediatrician but are so far> just having trouble getting anyone to return our calls. > > Peyton's primary area of difficulty is socially. He loves playing> with other kids, but struggles with the give and take of social> interactions and is typically clueless with social nuances and often> doesn't get it when friends are irritated etc. He has a few obsessive> interests. Right now he is big-time into storms and tornadoes. This> has been his #1 interest for over a year now. Prior to this it was> airplanes. > > I'm looking to talk to others with kids that are similar in age to> Peyton and are going through some of the same things. I am often> times sad for him. I want him to find a niche so badly. I hope he> will. If only he could have 1 really close friend.> Quote Link to comment Share on other sites More sharing options...
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