Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Welcome Maureen. I'm happy to hear that you are getting some relief from your meds. One of our main gripes as a group is lack of understanding from those around us. It's hard for them to understand what we go through especially since we don't look sick. Your husband sees you every day and witnesses the pain you go through and sees the difficulties you face. a On Fri, 11 Mar 2005 10:22:26 -0500, mhwbcw92 <mhwbcw92@...> wrote: > > Hi.. I wanted to introduce myself as I am brand new to the group. My name > is Maureen, I am 36 years old and married with two kids. > > I can't exactly pinpoint when I was " officially " diagnosed with RA as like > many people I have been to several rheumys. I just keep going to find some > relief. I tried so many different medications, psychotherapy, PT, > chiropractor, massage...ect.. I did vitamins... you name it and it seems > like I took it..I also have fibromyalgia along with Type II Bipolar... what > a mouthful. I do get very discouraged as I " don't look sick " . People are > so ignorant including family. The most understanding person is my husband > of 12 1/2 years. > > My reason of joining this group is to meet others who have gone through or > are going through the same things as me. I don't want to moan and groan... > just find support. My oldest child (on top of everthing else) has Rett > Syndrome. www.rettsyndrome.org She is almost 7 and requires round the > clock care. We do have private duty nurses but sometimes they don't show > up...ugh... > > Pain: I feel like I have tried them all and with so many reactions. > Currently I take a combo of psych drugs that seem to help. I take: > Neurontin, Visteral, Trileptal, Provigil, Cymbalta, Dyazide (for high BP) > and Risperal (PRN). For now this combo is helping. We recently added > Provigil for energy. I can't take more pain meds as they make me too tired > to care for kids and self. > > My RA has a " low factore " but I still suffer from the symptoms that come > from " out of the blue " . I have been to the ER too many times feeling like I > had broken bones. Anyone else have that problem??? > > I have had pain for many years but the worst was right after my daughter's > birth. Then when I got pregnant with son (had to stop taking meds), I felt > so much better. After his birth my pain came back with a vengence. It's > hard to function with some many unknowns in my life. I do try and sometimes > succeed. Currently I am on SSDI and am grateful for the assistance. It was > a fight as one diagnosis doesn't qualify me but the combo does. Grateful > for a great lawyer. > > I know that many of you can relate to my story and I look forward to > hearing from you... thank you for welcoming me into your group.. > > maureen mom to sarah and patrick and wife to brien > nj > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Welcome Maureen. I'm happy to hear that you are getting some relief from your meds. One of our main gripes as a group is lack of understanding from those around us. It's hard for them to understand what we go through especially since we don't look sick. Your husband sees you every day and witnesses the pain you go through and sees the difficulties you face. a On Fri, 11 Mar 2005 10:22:26 -0500, mhwbcw92 <mhwbcw92@...> wrote: > > Hi.. I wanted to introduce myself as I am brand new to the group. My name > is Maureen, I am 36 years old and married with two kids. > > I can't exactly pinpoint when I was " officially " diagnosed with RA as like > many people I have been to several rheumys. I just keep going to find some > relief. I tried so many different medications, psychotherapy, PT, > chiropractor, massage...ect.. I did vitamins... you name it and it seems > like I took it..I also have fibromyalgia along with Type II Bipolar... what > a mouthful. I do get very discouraged as I " don't look sick " . People are > so ignorant including family. The most understanding person is my husband > of 12 1/2 years. > > My reason of joining this group is to meet others who have gone through or > are going through the same things as me. I don't want to moan and groan... > just find support. My oldest child (on top of everthing else) has Rett > Syndrome. www.rettsyndrome.org She is almost 7 and requires round the > clock care. We do have private duty nurses but sometimes they don't show > up...ugh... > > Pain: I feel like I have tried them all and with so many reactions. > Currently I take a combo of psych drugs that seem to help. I take: > Neurontin, Visteral, Trileptal, Provigil, Cymbalta, Dyazide (for high BP) > and Risperal (PRN). For now this combo is helping. We recently added > Provigil for energy. I can't take more pain meds as they make me too tired > to care for kids and self. > > My RA has a " low factore " but I still suffer from the symptoms that come > from " out of the blue " . I have been to the ER too many times feeling like I > had broken bones. Anyone else have that problem??? > > I have had pain for many years but the worst was right after my daughter's > birth. Then when I got pregnant with son (had to stop taking meds), I felt > so much better. After his birth my pain came back with a vengence. It's > hard to function with some many unknowns in my life. I do try and sometimes > succeed. Currently I am on SSDI and am grateful for the assistance. It was > a fight as one diagnosis doesn't qualify me but the combo does. Grateful > for a great lawyer. > > I know that many of you can relate to my story and I look forward to > hearing from you... thank you for welcoming me into your group.. > > maureen mom to sarah and patrick and wife to brien > nj > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Hi Maureen, Welcome to the group! I am sorry to hear about your dx, but glad you found the group. You will find great information here, and wonderful support buddies. RA sis,Tawny > > Hi.. I wanted to introduce myself as I am brand new to the group. My name is Maureen, I am 36 years old and married with two kids. > > I can't exactly pinpoint when I was " officially " diagnosed with RA as like many people I have been to several rheumys. I just keep going to find some relief. I tried so many different medications, psychotherapy, PT, chiropractor, massage...ect.. I did vitamins... you name it and it seems like I took it..I also have fibromyalgia along with Type II Bipolar... what a mouthful. I do get very discouraged as I " don't look sick " . People are so ignorant including family. The most understanding person is my husband of 12 1/2 years. > > My reason of joining this group is to meet others who have gone through or are going through the same things as me. I don't want to moan and groan... just find support. My oldest child (on top of everthing else) has Rett Syndrome. www.rettsyndrome.org She is almost 7 and requires round the clock care. We do have private duty nurses but sometimes they don't show up...ugh... > > Pain: I feel like I have tried them all and with so many reactions. Currently I take a combo of psych drugs that seem to help. I take: Neurontin, Visteral, Trileptal, Provigil, Cymbalta, Dyazide (for high BP) and Risperal (PRN). For now this combo is helping. We recently added Provigil for energy. I can't take more pain meds as they make me too tired to care for kids and self. > > My RA has a " low factore " but I still suffer from the symptoms that come from " out of the blue " . I have been to the ER too many times feeling like I had broken bones. Anyone else have that problem??? > > I have had pain for many years but the worst was right after my daughter's birth. Then when I got pregnant with son (had to stop taking meds), I felt so much better. After his birth my pain came back with a vengence. It's hard to function with some many unknowns in my life. I do try and sometimes succeed. Currently I am on SSDI and am grateful for the assistance. It was a fight as one diagnosis doesn't qualify me but the combo does. Grateful for a great lawyer. > > I know that many of you can relate to my story and I look forward to hearing from you... thank you for welcoming me into your group.. > > maureen mom to sarah and patrick and wife to brien > nj > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 Hi Maureen, Welcome to the group! I am sorry to hear about your dx, but glad you found the group. You will find great information here, and wonderful support buddies. RA sis,Tawny > > Hi.. I wanted to introduce myself as I am brand new to the group. My name is Maureen, I am 36 years old and married with two kids. > > I can't exactly pinpoint when I was " officially " diagnosed with RA as like many people I have been to several rheumys. I just keep going to find some relief. I tried so many different medications, psychotherapy, PT, chiropractor, massage...ect.. I did vitamins... you name it and it seems like I took it..I also have fibromyalgia along with Type II Bipolar... what a mouthful. I do get very discouraged as I " don't look sick " . People are so ignorant including family. The most understanding person is my husband of 12 1/2 years. > > My reason of joining this group is to meet others who have gone through or are going through the same things as me. I don't want to moan and groan... just find support. My oldest child (on top of everthing else) has Rett Syndrome. www.rettsyndrome.org She is almost 7 and requires round the clock care. We do have private duty nurses but sometimes they don't show up...ugh... > > Pain: I feel like I have tried them all and with so many reactions. Currently I take a combo of psych drugs that seem to help. I take: Neurontin, Visteral, Trileptal, Provigil, Cymbalta, Dyazide (for high BP) and Risperal (PRN). For now this combo is helping. We recently added Provigil for energy. I can't take more pain meds as they make me too tired to care for kids and self. > > My RA has a " low factore " but I still suffer from the symptoms that come from " out of the blue " . I have been to the ER too many times feeling like I had broken bones. Anyone else have that problem??? > > I have had pain for many years but the worst was right after my daughter's birth. Then when I got pregnant with son (had to stop taking meds), I felt so much better. After his birth my pain came back with a vengence. It's hard to function with some many unknowns in my life. I do try and sometimes succeed. Currently I am on SSDI and am grateful for the assistance. It was a fight as one diagnosis doesn't qualify me but the combo does. Grateful for a great lawyer. > > I know that many of you can relate to my story and I look forward to hearing from you... thank you for welcoming me into your group.. > > maureen mom to sarah and patrick and wife to brien > nj > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Hello, Jen. Welcome to the group. You will find that you will make many friends here and get your questions answered. Believe me, when I tell you, that talking to someone who is going through this is much more satisfying than talking to someone who doesn't understand, no matter how hard they try. Feel free to post any questions, comments, concerns you may have. You can email me as well. Take care, and welcome on board!!....Marina in Ohio > > > Hello my name is or Jen as most call me. I am joining yuour > group because I was just told that I have RA. I am 37 and happily > married with 4 children. I have my first visit with an RA Doctor > starting April 15. On Aril 14 I am having some nerve test done and > am very nevious. I know I am a strange to the group but some one to > talk to about all this would be great so I dont burden my husband, > freinds and other memebers of the family. Hope to hear from someone > soon. > > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Hello, Jen. Welcome to the group. You will find that you will make many friends here and get your questions answered. Believe me, when I tell you, that talking to someone who is going through this is much more satisfying than talking to someone who doesn't understand, no matter how hard they try. Feel free to post any questions, comments, concerns you may have. You can email me as well. Take care, and welcome on board!!....Marina in Ohio > > > Hello my name is or Jen as most call me. I am joining yuour > group because I was just told that I have RA. I am 37 and happily > married with 4 children. I have my first visit with an RA Doctor > starting April 15. On Aril 14 I am having some nerve test done and > am very nevious. I know I am a strange to the group but some one to > talk to about all this would be great so I dont burden my husband, > freinds and other memebers of the family. Hope to hear from someone > soon. > > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 You came to a good place Jen. Glad you're here. Joyce from Texas [ ] New To Group Hello my name is or Jen as most call me. I am joining yuour group because I was just told that I have RA. I am 37 and happily married with 4 children. I have my first visit with an RA Doctor starting April 15. On Aril 14 I am having some nerve test done and am very nevious. I know I am a strange to the group but some one to talk to about all this would be great so I dont burden my husband, freinds and other memebers of the family. Hope to hear from someone soon. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 You came to a good place Jen. Glad you're here. Joyce from Texas [ ] New To Group Hello my name is or Jen as most call me. I am joining yuour group because I was just told that I have RA. I am 37 and happily married with 4 children. I have my first visit with an RA Doctor starting April 15. On Aril 14 I am having some nerve test done and am very nevious. I know I am a strange to the group but some one to talk to about all this would be great so I dont burden my husband, freinds and other memebers of the family. Hope to hear from someone soon. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Welcome Jen. Being newly diagnosed can be frightening. We have many members that have been through everything and we understand how you feel. I haven't had a nerve test done, but I watched my husband get one done. He didn't think it was anything to get upset about. Others have said they weren't so fun. I've found attitude makes a big difference in how we handle this disease. Some woman have babies without so much as an aspirin and others want to be knocked out at the first pain and woken up when it's over. Our pain tolerance is different, so what may be horrible for one person could be minimal for others. I hope the test goes well and the results will help you. Did your GP do the diagnosis? a On Mar 24, 2005, at 8:09 PM, whysper wrote: > > > Hello my name is or Jen as most call me. I am joining yuour > group because I was just told that I have RA. I am 37 and happily > married with 4 children. I have my first visit with an RA Doctor > starting April 15. On Aril 14 I am having some nerve test done and > am very nevious. I know I am a strange to the group but some one to > talk to about all this would be great so I dont burden my husband, > freinds and other memebers of the family. Hope to hear from someone > soon. > > Jen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Welcome Jen. Being newly diagnosed can be frightening. We have many members that have been through everything and we understand how you feel. I haven't had a nerve test done, but I watched my husband get one done. He didn't think it was anything to get upset about. Others have said they weren't so fun. I've found attitude makes a big difference in how we handle this disease. Some woman have babies without so much as an aspirin and others want to be knocked out at the first pain and woken up when it's over. Our pain tolerance is different, so what may be horrible for one person could be minimal for others. I hope the test goes well and the results will help you. Did your GP do the diagnosis? a On Mar 24, 2005, at 8:09 PM, whysper wrote: > > > Hello my name is or Jen as most call me. I am joining yuour > group because I was just told that I have RA. I am 37 and happily > married with 4 children. I have my first visit with an RA Doctor > starting April 15. On Aril 14 I am having some nerve test done and > am very nevious. I know I am a strange to the group but some one to > talk to about all this would be great so I dont burden my husband, > freinds and other memebers of the family. Hope to hear from someone > soon. > > Jen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Sonya, Hi and welcome. My name is Carol and I have a 7 month old boy,Dominick, with plagio/tort. We go to the ndale Va. office of CT. Is that where you are going? We live in Orange County. Dominick has been banded at 5 months, and we are now waiting for Band #2. Once again welcome to you and Kody. CAROLG --- In Plagiocephaly , " the_judkins " <the_judkins@y...> wrote: > > My son Kody is 10 months old and just got his DOC band yesterday. We > live in Sterling, Va. I would love to hear from others who live in > this area. Thanks, Sonya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Sonya, Hi and welcome. My name is Carol and I have a 7 month old boy,Dominick, with plagio/tort. We go to the ndale Va. office of CT. Is that where you are going? We live in Orange County. Dominick has been banded at 5 months, and we are now waiting for Band #2. Once again welcome to you and Kody. CAROLG --- In Plagiocephaly , " the_judkins " <the_judkins@y...> wrote: > > My son Kody is 10 months old and just got his DOC band yesterday. We > live in Sterling, Va. I would love to hear from others who live in > this area. Thanks, Sonya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 hi Sonya, Welcome to the group. How is Kody adjusting? My na wore a DOC band from the Charlotte clinic. Have you decorated it yet? We have tons of tips and ideas in the files section. mom to na DOC Grad South Carolina www.thefilyaws.com the_judkins <the_judkins@...> wrote: My son Kody is 10 months old and just got his DOC band yesterday. We live in Sterling, Va. I would love to hear from others who live in this area. Thanks, SonyaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 hi Sonya, Welcome to the group. How is Kody adjusting? My na wore a DOC band from the Charlotte clinic. Have you decorated it yet? We have tons of tips and ideas in the files section. mom to na DOC Grad South Carolina www.thefilyaws.com the_judkins <the_judkins@...> wrote: My son Kody is 10 months old and just got his DOC band yesterday. We live in Sterling, Va. I would love to hear from others who live in this area. Thanks, SonyaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Thanks for the welcome! Kody is adjusting well so far. The first day in the DOC band his pressure points stayed red for 2 hours so we had to go back the next day and have it readjusted. Since then his skin has looked great. Tonight is his first time to wear the band to bed. I hope he sleeps okay. We did have it decorated. My brother-in-law painted it for us this weekend. The backround is blue sky and snow. There are lego snowboarders all around it with a halfpipe in the front of the helmet. It looks awesome. I will post a picture in the photos section to add to all the beautiful babies. Thanks, Sonya > > My son Kody is 10 months old and just got his DOC band yesterday. We > live in Sterling, Va. I would love to hear from others who live in > this area. Thanks, Sonya > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Thanks for the welcome! Kody is adjusting well so far. The first day in the DOC band his pressure points stayed red for 2 hours so we had to go back the next day and have it readjusted. Since then his skin has looked great. Tonight is his first time to wear the band to bed. I hope he sleeps okay. We did have it decorated. My brother-in-law painted it for us this weekend. The backround is blue sky and snow. There are lego snowboarders all around it with a halfpipe in the front of the helmet. It looks awesome. I will post a picture in the photos section to add to all the beautiful babies. Thanks, Sonya > > My son Kody is 10 months old and just got his DOC band yesterday. We > live in Sterling, Va. I would love to hear from others who live in > this area. Thanks, Sonya > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Wow his band looks awesome!!! Your BIL did a great job! I'm glad he is adjusting well. mom to na DOC Grad South Carolina www.thefilyaws.comthe_judkins <the_judkins@...> wrote: Thanks for the welcome! Kody is adjusting well so far. The first dayin the DOC band his pressure points stayed red for 2 hours so we hadto go back the next day and have it readjusted. Since then his skinhas looked great. Tonight is his first time to wear the band to bed.I hope he sleeps okay. We did have it decorated. My brother-in-lawpainted it for us this weekend. The backround is blue sky and snow. There are lego snowboarders all around it with a halfpipe in the frontof the helmet. It looks awesome. I will post a picture in the photossection to add to all the beautiful babies. Thanks, Sonya> > My son Kody is 10 months old and just got his DOC band yesterday. We > live in Sterling, Va. I would love to hear from others who live in > this area. Thanks, Sonya> > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 >>>>>>>> My husband says that 50% of the communication in our home is (arguing) about the communication itself. << First of all welcome !! And reading the lines above made me think of my dh… if I had to put my finger on one difficulty between us, that would certainly be communication. No eye contact, no need to share, no understanding of my need for a dialogue, and just let him start talking about his pet subjects – history and old movies… he has never been dx with anything (except procrastination, lol) and in any case our ds with AS was adopted by us, so there is no genetic link I can rely upon, but the more I live with this dh if mine the more I am willing ot bet my head off that he has AS. <<<<<I believe I have a milder case of Asperger's than my daughter. My blessed NT husband has been very patient with all of us on our journey. Now I know why I don't have the huge capacity to love that he does. I try my hardest.> dear Pam, if indeed you have a form o f AS, then it is not your capacity to love that is affected, but your ability to pronounce your love, to communicate it. And having a dh who has been with you until now and is still patient shows that that too is probably not true either…. :-) hang around here, and you will get all the info you want and need( probably a lot more than you asked for) but more importantly : a lot of support! F -- No virus found in this incoming message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.11.0 - Release Date: 29/04/2005 -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.11.0 - Release Date: 29/04/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Hello all. I am new to the group as well. I have a question for Lou about the book " Brain Training. " I checked out the link you sent. Is the book informational only (I can see it's very scientific--I read the sample chapter) or does it also provide ways or exercises in language development? As an intro---I am Nennette from the L.A. area. My daughter is 4-1/2 and has been diagnosed with Apraxia of Speech. She's going through private speech therapy right now -- we've only just begun about 5 sessions so far. She goes to a private Montessori as a preschooler. She had an IEP through the school district, but we have been disatisfied with it (long story). I pray that the one-on-one therapy does the trick. Her condition is the result of malnutrition during the first 18 months of her life. We adopted her at age 3 from Ecuador. At that time she was speaking 2-to-3-word phrases in Spanish. Within 6 months of being in the States, she lost all the Spanish that she knew. She is very talkative and otherwise appears to be healthy and has good gross and fine motor skills. But because of her background, she has a speech delay of about 8 months, supposedly. What I am concerned about is how this will affect her learning ability, especially now that she is getting close to starting formal schooling. I'm so glad I found this group and be amongst those of you who are going through the same issues. Thank you! Nennette Ferris Mama to Nantar Noelle (dob 8/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Nennette My wife and I, like most parents in this group, are parents trying to understand and mange all the information about our child's learning difficulties. I sometime feel that we expect to much from our kids at certain ages. What really is normal? We had a neurologist tell us not to worry about 's late taking (she was 3 at the time), she will talk when she is ready. Turns out that he had a child that did not talk to he was 6 years old and then they could not shut him up. But as parents we are concerned and want to do all we can to help our kids. I probably will get winded writting this and ramble on but here we go ................. The " Brain Training " book tries to cover the way we communicate, stages in development, how the brain works, on the scientific side, but tries to offer the alternatives to teaching our kids how to communicate. Its not your typical approach to " Late Talkers " or Apraxia. I feel it gives you the information needed to teach your child through what I call the word-picture-play scenarios. I am sure I am not communicating the jest of the book correctly but the more you understand and read up on the different ways the brain works and absorbs information during the different development cycles of a child, the better you can decide the best approach for your child. Go with your gut feeling, it's probably right. In your case, from your email, your Daughter's problems are from malnutrition along with being thrown into a new culture. Alot for a little one to adjust too. Kids then to bounce back from issues like this along with love from family and friends. Being 8 months behind is not that bad! , my daughter, is 4 1/2 but communicates at a 3 year old level (verbal). You did not mention what type of speech therapy she is doing: Phonics speech therapy? She goes to a private Montessori school which is probably one of the best things you can do academically (besides home school). The environment allows for her to learn at her own pace and not forced to do things she is not ready for. From the reading I do and from the Medical community I trust, the best approach for a Verbal Apraxia diagnosed child is more on the order of word-picture-play scenarios. Phonics based is like putting the horse before the cart. It has it's place in Verbal Apraxia therapy but only after certain word definitions are known to the child. I am no doctor but seeing is believing ........... For , the best way we see her learn and communicate is by doing, feeling, and observing. The standard speech therapy like schools do or the OLD Methods some therapists use do not get results for . The Brain Training Associates, MacAlpine, Ph.D., takes this approach of word-picture-play scenarios first. Trying to force an Verbal Apraxia child to learn say the " F " sound (Phonics speech therapy) is the wrong approach. The child has no clue what a " F " sound is ... cannot feel it, touch it, or observe it .... but teaching through pictures and objects ... like a Fire Hose, a fig-newton will make more sense to the child. They are able to see and touch it therefor associate the sound " F " to a real thing. Make sense? One last thing, if possible try different therapists that have different approaches to the problem. Or if you do not see results, change therapists. Also if the therapist will not let you sit in on the therapy session .... run as fast as you can away from that therapist. Lou nennette ferris wrote: > Hello all. I am new to the group as well. I have a question for Lou > about the book " Brain Training. " I checked out the link you sent. Is > the book informational only (I can see it's very scientific--I read > the sample chapter) or does it also provide ways or exercises in > language development? > > As an intro---I am Nennette from the L.A. area. My daughter is 4-1/2 > and has been diagnosed with Apraxia of Speech. She's going through > private speech therapy right now -- we've only just begun about 5 > sessions so far. She goes to a private Montessori as a preschooler. > She had an IEP through the school district, but we have been > disatisfied with it (long story). I pray that the one-on-one therapy > does the trick. Her condition is the result of malnutrition during the > first 18 months of her life. We adopted her at age 3 from Ecuador. At > that time she was speaking 2-to-3-word phrases in Spanish. Within 6 > months of being in the States, she lost all the Spanish that she knew. > She is very talkative and otherwise appears to be healthy and has good > gross and fine motor skills. But because of her background, she has a > speech delay of about 8 months, supposedly. What I am concerned about > is how this will affect her learning ability, especially now that she > is getting close to starting formal schooling. > > I'm so glad I found this group and be amongst those of you who are > going through the same issues. Thank you! > > Nennette Ferris > Mama to Nantar Noelle (dob 8/00) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Lou welcome to the group -you sound like an awesome dad! The book you just posted about is timely because it relates to our recent discussion about right/left brain theories on language acquisition as well as the importance of multisensory approaches to both therapy and learning. Actually -this page they have as an example chapter to read here http://www.braintraining.com/Chapter.pdf which starts with the story about Genie -same story was on the following page I came 'so' close to referencing yesterday for it's views on right/left brain in regards to language acquisition. What are the odds you know?! " Critical period for language acquisition: the case of Genie: Scientists believe that there may be a critical period for first language acquisition. This means that there is a time limit during which the baby must be exposed to language if he/she is to acquire language normally. A famous case study which lends support to the critical period theory is the case of Genie. Genie was a young girl who was locked in a small closet-like room at the age of 18 months by her schizophrenic father. Her mother was blind and was also abused by the father, so she was unable to help Genie. After her father died, Genie was finally freed from the closet. She was 13 years old. When Genie was first locked in the closet, she was just beginning to acquire language. What kind of language skills would she have when released at the age of 13? Genie's tragic case provides evidence that language acquisition may be limited to a critical period. Although Genie is now an adult, her language development is quite immature. She produces mostly nouns, some verbs, but few adjectives or adverbs. Her utterances usually consist of no more than three words. After intensive language training and psychotherapy, Genie has not been able to acquire normal language skills. Why is there a critical period for learning language? How long is that critical period? The critical period is thought to be related to brain plasticity and lateralization. Plasticity refers to how flexible the brain is in learning various functions. Lateralization refers to the specializations of the two sides, or hemispheres, of the brain. Scientists believe that the critical period for first language acquisition ends somewhere between the ages of 4 and 12. At this age, the brain appears to lose its plasticity for learning language. In addition, specialized language behaviors become controlled primarily by the left hemisphere of the brain. In theory, if a child is not exposed to language during the critical period, he/she will never be able to acquire it normally. Genie was not exposed to language during the critical period. She was not spoken to; she did not learn how to form words and to combine those words into sentences. When she was released from the closet at the age of 13, her brain had lost its ability to learn normal language. However, we must remember that Genie suffered more than language deprivation during her captivity; she also suffered social deprivation. The social deprivation probably played a role in her later language development. " http://kccesl.tripod.com/hypertextstudy/humanlanguagespring03.html About multisensory -I'm on the same page. So what if our children don't just pick up speech like others do -we need to find what works for them. If it works and helps them communicate -that's what we do. Watch what sense appears to best helps your child and work it into therapy and part of his or her life. For example -my son Tanner always talked best when jumping on a trampoline, being pushed on a swing, or being chased...in movement. (or today -after a day on rides at Disney or Universal) So we learned to incorporate that into therapy -part of how we help him to speak. Like when younger when Tanner said the words " absolutely it! " It was amazing -but as many of you know -it's an amazing and most times fleeting moment. What did I do? I tried to get him to repeat it -but not the way most do that. I didn't say " Say that again " because that doesn't work for apraxic children. I chased him around the house while he was laughing shouting " absolutely it " over and over while I was saying " Don't say absolutely it again or I'm going to tickle you I'm so happy! " (probably doesn't translate well -but if you were there reverse psych worked really well with Tanner!) My goal was to get him to repeat it over and over -to get it into his motor memory -but at the same time keep it fun. We didn't stop at movement -visual therapy, auditory therapy, massage therapy -in some ways so much of it was worth exploring. When Tanner reads today it's music to my ears he reads so well. That's all I can say -when he reads he sounds just like everyone else. Does he when he's not reading? When he only needs to answer with brief answers -or he sounds choppy still at times. Tanner's " Talking Page " http://www.debtsmart.com/talk/tanner.html One of the best pages I found for multisensory language programs that it sounds like you would like too Lou - http://www.ldonline.org/ld_indepth/reading/mssl_methods.html I always suggest to print this out and save it in your child's file just in case. Links don't always work for ever, or even for the year it takes for you to need it. Best to you and your family and again -welcome! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thank you so much, Lou & , for your in-depth replies! You have convinced me to purchase that book on brain training! And yes, , we do believe in the theory of right vs. left brained children. In fact, I just purchased the book " Upside Down Brilliance: The Visual-Spatial Learner " . But even before hearing of that book, we were convinced that Montessori school was the best option if only because of their hands-on, practical approach to education and low teacher:student ratio. I've always had a gut feeling about my daughter's speech delay, despite how people, though well-meaning, often shrug it off as a late-talker case or simply a result of multi-lingual exposure. I am not an expert researcher, but in the little reading that I've done on speech development, I know that it's more than that. Upon arriving in the US (3 years) we immediately put our daughter in private preschool and enlisted her in Special Ed and got her an IEP to attend AEEP (after school early ed program) with focus on speech therapy. But I quickly became exasperated with their system because (a) the speech therapist's attendance was hit or miss, and ( if she did show up, only 15 minutes was alloted (group setting). My daughter showed improvement just from the regular interaction at preschool. But we kept her on the AEEP classes realizing that it has some value. The problem now is she turns 5 in August, and we were pretty much told by the district that we have to put her in Kindergarten to continue receiving services. I refuse to put my daughter in Kindergarten just because she's 5. Anyway, that's a whole other subject. On the one hand, public services are free, but if it's a system that we do not believe in, it may do more harm than good. And that is why we opted to put her in a private Montessori school. They are also better in addressing any potential learning disability she might have as a result of Apraxia. May I ask you, Lou, at what level your daughter's speech is? You said 3-year old. Forgive me for my cluelessness. What is the typical speech pattern of a 3-year-old? The reason I ask is because I feel my daughter is at the same level--or perhaps I am wrong. She speaks clearly and sensibly most of the time and on a few occasions makes up words or gives up if she cannot express herself. Her sentences are usually 4 or more words, but she has trouble with grammar---gender, tenses, and puts words in the wrong order. For instance, even if she knows to say " can you carry me, " she'll usually say, " can i carry you. " She would also drop words from a sentence like, " can you play me, " although in a different circumstance she'll say " i want to sit WITH you. " She can relate stories and will " pretend " to read a book and be right on with what's going on on each page because she has memorized the dialogue, minus correct grammar sometimes. She memorized songs but drops words here and there. She recognizes letters by phonetics and has recently been so preoccupied by identifying letters she sees on signs and billboards. As far as the speech therapy she's getting now---interestingly, you mentioned word-picture-play. That's exactly what the therapist is doing. She is also against phonetics, in fact, she pointed that out to me right away when she observed that my daughter, when identifying objects in picture cards, would sound out the first letter a couple times before saying the word, as in " ca.. ca.. cat. " She worried that that might cause her to stutter. Anyway, the therapist is willing to discuss these matters with her teacher to find the best approach in enhancing speech development. I am not in the room when she gets therapy and prefer not to because my daughter gets distracted when I am around. Anyway, any feedback or exchange is always appreciated! Thank you all! This is a very informative group! Nennette Ferris Chatsworth (L.A.), CA Mama to Nantar (diagnosed with Apraxia of Speech) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Nennette Hmmmmm turns 5 in August also, 18 August to be exact. From your description Nantar is a head of in her ability to put sentences together and vocabulary usage. You are right it is more then speech development. in the past several months started to put 3 and 4 words together and on occasion puts two sentences together. She does more of 3 word sentences that stand alone. Let's go pick me up, daddy just do it go up stairs you home She cannot say " " but says " amtha " . She has a problem with the sequencing needed to put out a complete thought. She also has problem with gender which I feel at this point is not a big deal. She understands concepts very well and can follow simple instructions (Multiple steps) but has a hard time getting the thoughts to words. just cannot put multiple sentences together or come up with the agatives & pronouns one might expect from a child her age. She does NOT know letters or can print. Drawing is non existent i.e. circles, squares, triangles (for the most part). Her motor skills are lacking, clumsy one might say. Jumping, running and those type of activities are not smooth. She rather show you then speak it - if that makes sense. She is very picture orientated, hands on, and non verbal communication. Her sounds are nasal in nature. She is an extremely happy kid and socializes very well. Normal kids tend to shy away from her since she cannot communicate. She is very smart and can figure out complex things. Putting her in Montessori school is great. I wish more parents would look at this option, for any kid. The one-on-one teaching, group teaching, and teachers willingness to think outside the box, makes it a perfect atmosphere for learning. She recognizes letters by phonetics and has recently been so preoccupied by identifying letters she sees on signs and billboards ... wow that is great! Nantar sounds like she will be ok. She is on the road to living a full and happy life. We home school so we do not use the public resources (we can if we wanted too). The " Systems " in place through public schools are inadequent and personnel are sub par. I do not know how many of you can handle the type of bureaucracy, lack of caring, forcing kids into situations that are not meant for them, and I know it's free. We home school so our kids get a better education then what can be given in Public schools. We know many Public School families and we hear nothing but horror stories. The schools seemed to want to put kids on one drug or another for almost any reason (mainly to make teachers life easier). I am lucky that I have great insurance and make a good living so we go the private rout for therapy. One must use the resources available. The therapist we use have stated (My Wife) does more with and using the right techniques then any therapy we can buy. But going to the right Therapist helps us to understand the issues facing us and gives us feedback on techniques to use. We went to a neurologist yesterday, more opinions for us to digest, and he stated " just do more of everything you are doing " . The doc also said her ability to digest information and then respond is not there. The sequencing of putting that thought together is lacking. He explained it like a computer Macro where you just push one button and through that many different tasks get done automatically to spit out an answer. He also said there is no special therapy or drug we should use. Meaning different types of therapy, mainly word-picture-play. Again he said " the more the better and different situations " . We put in a gymnastics class (ASI), music class, and art class several months ago. I believe this activity is helping more then any Verbal Therapy session we do. Yes she has problems doing the " stuff " in the classes but her mind is working, thinking and developing because of it. I feel her wiring in her brain is starting to make connections. I will be buying " Upside Down Brilliance: The Visual-Spatial Learner " . My daughters development is moving in the right direction mainly due to my wife, , and the amount of time, effort and energy she puts into . What causes this? was 41 when she had her, the shots that they get as infants, bad gens, the third child born, the positioning of the stars .... who knows ... we just deal with it! Thanks for the feedback and you seem like you are smart, loving, and on the right track. Lou nennette ferris wrote: > Thank you so much, Lou & , for your in-depth replies! You have > convinced me to purchase that book on brain training! And yes, , > we do believe in the theory of right vs. left brained children. In > fact, I just purchased the book " Upside Down Brilliance: The > Visual-Spatial Learner " . But even before hearing of that book, we were > convinced that Montessori school was the best option if only because > of their hands-on, practical approach to education and low > teacher:student ratio. I've always had a gut feeling about my > daughter's speech delay, despite how people, though well-meaning, > often shrug it off as a late-talker case or simply a result of > multi-lingual exposure. I am not an expert researcher, but in the > little reading that I've done on speech development, I know that it's > more than that. > > Upon arriving in the US (3 years) we immediately put our daughter in > private preschool and enlisted her in Special Ed and got her an IEP to > attend AEEP (after school early ed program) with focus on speech > therapy. But I quickly became exasperated with their system because > (a) the speech therapist's attendance was hit or miss, and ( if she > did show up, only 15 minutes was alloted (group setting). My daughter > showed improvement just from the regular interaction at preschool. But > we kept her on the AEEP classes realizing that it has some value. The > problem now is she turns 5 in August, and we were pretty much told by > the district that we have to put her in Kindergarten to continue > receiving services. I refuse to put my daughter in Kindergarten just > because she's 5. Anyway, that's a whole other subject. On the one > hand, public services are free, but if it's a system that we do not > believe in, it may do more harm than good. And that is why we opted to > put her in a private Montessori school. They are also better in > addressing any potential learning disability she might have as a > result of Apraxia. > > May I ask you, Lou, at what level your daughter's speech is? You said > 3-year old. Forgive me for my cluelessness. What is the typical speech > pattern of a 3-year-old? The reason I ask is because I feel my > daughter is at the same level--or perhaps I am wrong. She speaks > clearly and sensibly most of the time and on a few occasions makes up > words or gives up if she cannot express herself. Her sentences are > usually 4 or more words, but she has trouble with grammar---gender, > tenses, and puts words in the wrong order. For instance, even if she > knows to say " can you carry me, " she'll usually say, " can i carry > you. " She would also drop words from a sentence like, " can you play > me, " although in a different circumstance she'll say " i want to sit > WITH you. " She can relate stories and will " pretend " to read a book > and be right on with what's going on on each page because she has > memorized the dialogue, minus correct grammar sometimes. She memorized > songs but drops words here and there. She recognizes letters by > phonetics and has recently been so preoccupied by identifying letters > she sees on signs and billboards. > > As far as the speech therapy she's getting now---interestingly, you > mentioned word-picture-play. That's exactly what the therapist is > doing. She is also against phonetics, in fact, she pointed that out to > me right away when she observed that my daughter, when identifying > objects in picture cards, would sound out the first letter a couple > times before saying the word, as in " ca.. ca.. cat. " She worried that > that might cause her to stutter. Anyway, the therapist is willing to > discuss these matters with her teacher to find the best approach in > enhancing speech development. I am not in the room when she gets > therapy and prefer not to because my daughter gets distracted when I > am around. > > Anyway, any feedback or exchange is always appreciated! Thank you all! > This is a very informative group! > > Nennette Ferris > Chatsworth (L.A.), CA > Mama to Nantar (diagnosed with Apraxia of Speech) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 You might try - C. , M.D. 4505 Fair Meadows Lane - Suite 111 Raleigh, NC - 27607 919-571-4399 I suggest you take him the FAQ and a print-out of the scientific studies supporting this therapy. Ethel rheumatic New to group > Hi All, > I have recently discovered the possibility of antibiotic therapy for > my RA, diagnosed 10 years ago.I have used NSAIDS to decrease pain, but > want to explore natural therapies. Does anyone know of doctors in the > Raleigh, N.C area who is familiar with the antibiotic protocols for > RA. I am also seeking a homeopathic/osteopathic doctor. Has anyone had > success with accupuncture/homeopathic therapy? I am sore primarily in > my wrists and fingers, ankles and knees. I work 14 hour days 6 days a > week working on a computer and in a restaurant nights. I would > appreciate the benefit of the group experiences. > Thanks, > Marie Myatt > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 " She cannot say " " but says " amtha " . She has a problem with the sequencing needed to put out a complete thought. She also has problem with gender which I feel at this point is not a big deal. She understands concepts very well and can follow simple instructions (Multiple steps) but has a hard time getting the thoughts to words. just cannot put multiple sentences together or come up with the agatives & pronouns one might expect from a child her age. " Actually if your child is apraxic, all could just be par for the course for apraxia. Children with apraxia do go through normal developmental patterns of speech acquisition in some ways, however it's so painfully slow it's hard to see that unless you look at this group of children as a group and over time. Here is something I put together for The Late Talker book that was reviewed by many PhDs and neuroMDs and found to be quite interesting. You may spot your child's path of development in here. ~~~~~~~~~~~~~~~~~~start of archive I first wrote this over two years ago in January 2002 for inclusion in The Late Talker as parent observed stages of apraxia viewed through our grouplist. This list was approved by all CHERAB advisors http://www.cherab.org/information/speechlanguage/advisoryboard.html (but needed cleaning up which I never did) We ended up not including this in The Late Talker because even though approved, in the final cut we needed to edit out almost 300 pages for our book, and this included awesome pages that were already completed. Dr. Marilyn Agin, Malcolm Nicholl and I chose to leave in only the most critical information for a parent of a newly diagnosed apraxic child to know. I still don't want to clean this up, or change from my original writing from over 2 years ago -so here it is, what I still stand by and what still needs to be studied in my opinion and what I'd travel to hear a researcher explain: ~~~~~~~~~~~~ " Just like typically developing speech in a child, a child with apraxia appears from the members of our large Foundation to have stages they go through -and some children skip one or two -or pass through some of them quickly or get stuck in one or more of them. We don't know if all the member's children were properly diagnosed with apraxia or not, but this may be worth looking into. OBSERVED APRAXIA STAGES (?) THAT SHOULD BE EXPLORED FURTHER Stage 1 non verbal stage Where the child uses one or two sounds to communicate everything with gestures, and made up elaborate sign. At this stage, depending on the infant's or child's age you may not be able to diagnose verbal apraxia, but neurological soft signs should be looked for, as well as signs of oral motor problems or oral apraxia. An older apraxic child who is stuck at this stage will be using augmentative devices and could be at risk for misdiagnosis of cognitive ability if not tested appropriately. Stage 2 simple talk stage Where the child begins to just like a typically developing child learn new sounds or words, but unlike a typically developing child, most (not all) appear to forget how to say the sounds or words again, so they lose that ability to " build " their speech like most other children do. This is in most cases the only stage that is acknowledged by ASHA and described by most of the speech professionals*. Please see examples above (breaks down with longer utterances, etc.) An older apraxic child who is stuck at this stage will be using augmentative devices and could be at risk for misdiagnosis of cognitive ability if not tested appropriately. Stage 3 Dysfluency stage Where the child who seemed to be progressing so well suddenly begins to stutter. Most speech professionals do not consider classic " stuttering " only a normal developmental dysfluency. However with apraxic children this stage is especially frustrating in that if the apraxic child does go through this stage, they appear to get " stuck " here. In speaking to members from the CHERAB Foundation who's apraxic child goes through this stage, there is frequently another member of the family who is a stutterer, which may mean there is some type of genetic link. Type of therapy to provide to an apraxic child at this stage that is appropriate is not clear and depends on which expert you speak to-in some cases there are direct oppositional views. Stage 4 Baby Talk stage Where the child who is now talking and being understood continues to mix up past and present tense, as well as sentence structure, and frequently will leave out the " little words " like " the " and " a " . This may not have anything to do with SLI as discussed above, an apraxic child typically does keep sentences shorter than average, but there may be children diagnosed in the SLI area that are apraxic, and visa versa -and being there is a genetic link to both SLI as well as apraxia, a closer look needs to be taken at this stage. A five year old apraxic child who receives appropriate therapy, including some of the recent discoveries we will talk about later, may progress faster than previously stated, however just like in the previous stage, apraxic children also seems to get stuck in this stage. An example would be " Me want doe too " for " I want to go too " or " Mommy me walk store too? " for " Mommy can I walk to the store too? " Stage 5 Full language stage Where the child, teenager, or adult apraxic has learned strategies to overcome the apraxia enough that it's not noticed by the average listener. However upon closer observation you will notice that an apraxic in the full language stage will frequently use less sophisticated language. An example comes in right here. Instead of saying " an apraxic in the full language stage will frequently use less sophisticated language " they may say " an apraxic in the full langwish stage will not sound as grown up most of the time " So in other words, there will still be words that he or she can not pronounce correctly, and being aware of them, will avoid them and substitute when they can. They can be highly intelligent, but due to their lack of expressing themselves using sophisticated language at times others may not know this. This is perhaps in some ways just as frustrating a stage as any other. In some cases maybe more so because now that they are " talking " and talking fine most of the time, ASHA professionals may not consider them candidates for further services. The genetic possibilities and medical involvement needs to establish these stages, including this one, so the population can understand and accept this disability just like they do for those with poor eyes or poor hearing. This is an example of a late talker that unfortunately for all did not " just start talking " Stage 1: Most professionals don't know how to diagnose oral or global apraxia, or diagnose suspected verbal apraxia in this stage. This is the way almost all professionals as well as online sources were back in 1999 when Tanner was first diagnosed. If we knew then what we know today through CHERAB and The Late Talker -Tanner could have had early intervention from when he first regressed at 11 months old. Can't change that which is sad -but for that reason I continue to do what I do to raise awareness. Stage 2: The only stage talked about (and talked about and talked about) This is what I call the " around the corner " stage which is covered well...well for the most part -but still the soft signs -the multifaceted aspects are typically left out by most -soft signs like the hypotonia, sensory integration dysfunction (called DSI instead of SID so as not to confuse it with the sudden infant death syndrome which my oldest son Dakota was at risk for), oral apraxia and other motor impairments even just mild one in other areas of the body -and new to our attention stuff like constipation and trouble blowing their nose on command. Just today Glenn and I were driving the boys to school and Tanner needed to blow his nose. 'Most' of the time now today Tanner knows how to blow his nose due to lots of practice. But like anything with apraxia -most of the time doesn't necessarily mean all the time. I handed Tanner a tissue and he put it up to his nose and breathed out through his mouth. I said " No Tanner -use your nose to breath out silly! " I then helped him and he breathed out of his nose softly -not enough to do anything. So I said " OK you have to breath out harder so breath in and then breath out really deep OK? " Tanner breathed in really deep and when he went to breath out I took the tissue and really quick stuck it up to his nose before he could breath out -but that didn't work either because we both started laughing. Then he sneezed. Stage 3 and 4 -not all children go through -but too many do to leave them out, or the child is diagnosed with something else. As I know with Tanner through Dr. Dale -Tanner's dysfluency stage was not classic stuttering and as Dr. said " You are correct that we have done an injustice in not studying apraxia in children enough yet. For this reason we don't know what is 'normal' for an apraxic child as to how long they will stay in the developmental stage of dysfluency, but we are finding it can be quite long " And Stage 5 -that's the one where parents see their child as " cured " and even though they may leave the group at stage 3-5 -most leave at 5 not realizing there are strategies for older children/teens and adults in this stage too. EFAs speed things up a bit so children may advance quicker -but again EFAs are not a cure -or not a complete cure. I'd like to add to that neither is therapy a cure. Apraxia is an impairment that one can learn to overcome and live a successful life with. Just like a stutterer -those that don't know may not even be aware there was any type of impairment of speech. ~~~~~~~~~~~~~~end of archive ===== Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.