Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hi Sandy, I can't help you, I am feeling crappy myself. I want to Welcome you. I am new at speaking up but finding more comfort in sharing myself some. Best Wishes through your RA Journey. Hugs, Peggy " The only difference between a weed and a flower is judgment " - Author Unknown [ ] New here Hello, I am new here and hope to be able to provide support as well as get some for myself. I was diagnosed with RA in November of last year and feel like I am at the end of my rope. I am only 33 and have 3 small children and am in so much pain. The medications the doctor has put me on do little to help me and just 3 days agoe I went off the prednisone. I am also having trouble losing weight and decided that there has to be another medication I can take that will not hinder my weight loss. I was just at the doctor today armed with lots of information about the RA as well as Lupus and he just poo pooed me and sent me out the door. He did though want me to have my hands and feet xrayed which I had done right after my appointment. What I really need to hear from some of you is how you cope on a daily basis with all the pain. I am just so tired of feeling crappy. i do not even want to get out of bed some days. I hope to hear from some of you and look forward to meeting and hearing your stories. Take Care sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Sandie, I don't know how other people do it, but I start every day as soon as I wake up, asking God to give me what I need for the day. I don't know what I would do without Him. I am a real believer in prayer, in leaning on Jesus for my every need. The book of Psalms has been a great encouragement to me- I've just about worn out that book in my Bible over the years. I have raised 4 kids (and a few strays) and have one left at home. If you don't feel comfortable with your doc, why don't you do some checking around for another rheumy in your area? Do you think your doctor truly realizes how bad you feel, and how much pain you are in? It does take time to hit on the right combination of meds, or it did in my case. Try to rest when you can, take a look at your priorities and activities to see what is necessary, what things you can say no to, and if there are some things that can wait a bit. There are little things that keep me going- a bulletin board here at the office with pictures of my kids & people I admire (Dr. King, Mother , grandbabies.) E mails from good friends, taking a minute for a cup of tea and maybe a little chocolate ) And a quote i have on my computer- " appreciate every moment of life because even in your darkest moment God is with you. Lord, I know that when things become too difficult for me, you will take my burden and carry me. I am not afraid. " I hope this helps in some small way. Know that you are not alone, and that you will be cared about in this group. God bless jane > > > Hello, > > I am new here and hope to be able to provide support as well as get > some for myself. I was diagnosed with RA in November of last year and > feel like I am at the end of my rope. I am only 33 and have 3 small > children and am in so much pain. The medications the doctor has put me > on do little to help me and just 3 days agoe I went off the > prednisone. I am also having trouble losing weight and decided that > there has to be another medication I can take that will not hinder my > weight loss. I was just at the doctor today armed with lots of > information about the RA as well as Lupus and he just poo pooed me and > sent me out the door. He did though want me to have my hands and feet > xrayed which I had done right after my appointment. > What I really need to hear from some of you is how you cope on a daily > basis with all the pain. I am just so tired of feeling crappy. i do > not even want to get out of bed some days. > I hope to hear from some of you and look forward to meeting and > hearing your stories. > > Take Care > sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Dear Sandie, Its is hard Im 32 and found out about my RA a year ago. I have 4 kids ages 5-11. We had them in 6 years one on top of the other. I have felt crappy for several years to be told get a job your bored at home with the kids. BORED I figured she had not a single child at home and if she did she probably has a nanny raising it. I homeschool my 4 kids and I know some days I can hardly get out of bed. But Jesus is my strength and comfort and without Him I am useless. Hope is what will keep you going and faith that it will get better. Faith is beleiving in something that has no evidence of proof. Some days I wake up and there is no proof I will get up. Faith and hope keeps me going. And beleiving in heaven where there is no tears, no pain, no sorrow, no sickness. Someday I will be without this RA> Praise the Lord. I will be praying for you. If you need to talk. Just writeme. God Bless. Latisha latishavallone@... JANE <janeatregis@...> wrote: Sandie, I don't know how other people do it, but I start every day as soon as I wake up, asking God to give me what I need for the day. I don't know what I would do without Him. I am a real believer in prayer, in leaning on Jesus for my every need. The book of Psalms has been a great encouragement to me- I've just about worn out that book in my Bible over the years. I have raised 4 kids (and a few strays) and have one left at home. If you don't feel comfortable with your doc, why don't you do some checking around for another rheumy in your area? Do you think your doctor truly realizes how bad you feel, and how much pain you are in? It does take time to hit on the right combination of meds, or it did in my case. Try to rest when you can, take a look at your priorities and activities to see what is necessary, what things you can say no to, and if there are some things that can wait a bit. There are little things that keep me going- a bulletin board here at the office with pictures of my kids & people I admire (Dr. King, Mother , grandbabies.) E mails from good friends, taking a minute for a cup of tea and maybe a little chocolate ) And a quote i have on my computer- " appreciate every moment of life because even in your darkest moment God is with you. Lord, I know that when things become too difficult for me, you will take my burden and carry me. I am not afraid. " I hope this helps in some small way. Know that you are not alone, and that you will be cared about in this group. God bless jane > > > Hello, > > I am new here and hope to be able to provide support as well as get > some for myself. I was diagnosed with RA in November of last year and > feel like I am at the end of my rope. I am only 33 and have 3 small > children and am in so much pain. The medications the doctor has put me > on do little to help me and just 3 days agoe I went off the > prednisone. I am also having trouble losing weight and decided that > there has to be another medication I can take that will not hinder my > weight loss. I was just at the doctor today armed with lots of > information about the RA as well as Lupus and he just poo pooed me and > sent me out the door. He did though want me to have my hands and feet > xrayed which I had done right after my appointment. > What I really need to hear from some of you is how you cope on a daily > basis with all the pain. I am just so tired of feeling crappy. i do > not even want to get out of bed some days. > I hope to hear from some of you and look forward to meeting and > hearing your stories. > > Take Care > sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 I would think you could go to the garden wedding in 3 weeks easily. You won't be pain free and you won't be dancing but you can enjoy yourself. You can just stand up and dance from the waist up! Bring a cooler with ice bags in it so you can ice, and elevate and just enjoy yourself. It's good to get out, just not good to over do it, so plan to rest that day before and after the wedding. Congratulations on finally getting the clearance for the TKR sandi <melissajax@...> wrote: Hello! I'm , in SE Michican, and I'm excitedbecause I met an orthopaedic surgeon this week wholooked at my x-rays and immediately recommended TKR. That's what I was hoping to hear. I've had pain in myknees since I was 20 (now 47), had the meniscus on theleft knee cleaned up when I was 25, and havedeteriorated to the point of continuous pain,difficultly walking, and bowing of my leg. My PCPwouldn't even look at the knee, just told me to takeglucosamine and lose weight. I badgered him until heagreed to give me a referral. Surgery should takeplace in about a month.There is never a good time for surgery like this, soI'm not going to wait for a better time. We have agarden wedding to attend about 3 weeks after surgery. How mobile can I expect to be? Historically I bounceback very quickly and push myself hard. Anymotorcyclists here? How quick can I expect to be backon my bike? I'm thinking 6 weeks - I have tripsplanned this summer! in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Hello , I'm from Michigan north of Detroit and had my TKR August 31, 2004 and have had many problems with range of motion and extension. Please make sure you do all your research regarding your OS and on TKR before you go ahead with this surgery. I'm not trying to talk you out of it, just want to make sure you've done all your homework. I was 51 years young and I stress young, when I had my surgery done. I feel so much older now because I'm still using a cane to get around with as well as constantly in pain and my extension is only at 37 degrees and range of motion is only at 60 degrees. It has been a very difficult time for me. I know everyone is different and everyones pain tolerance is different. I wish you all the luck in the world with your decision. Please feel free to email me. Regards, > Hello! I'm , in SE Michican, and I'm excited > because I met an orthopaedic surgeon this week who > looked at my x-rays and immediately recommended TKR. > That's what I was hoping to hear. I've had pain in my > knees since I was 20 (now 47), had the meniscus on the > left knee cleaned up when I was 25, and have > deteriorated to the point of continuous pain, > difficultly walking, and bowing of my leg. My PCP > wouldn't even look at the knee, just told me to take > glucosamine and lose weight. I badgered him until he > agreed to give me a referral. Surgery should take > place in about a month. > > There is never a good time for surgery like this, so > I'm not going to wait for a better time. We have a > garden wedding to attend about 3 weeks after surgery. > How mobile can I expect to be? Historically I bounce > back very quickly and push myself hard. Any > motorcyclists here? How quick can I expect to be back > on my bike? I'm thinking 6 weeks - I have trips > planned this summer! > > in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 > Hello, I am also new here today. I had a TKR in October and need my other knee done. But I had a bad experience and a little chicken to go through with the second one. During my surgery my leg bone, tibia, was broken and ended up non weight bearing for 6 weeks. I am looking for friends just to share the experience with and maybe find suport for the bad days. , I like your enthusiasm to go through with the surgery. You will do well with that attitude. And I would go to the wedding just to enjoy getting out whether walking on my own or with a cane. LeAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi, Welcome to the group! The worst part of this whole process, the casting is behind you. It's smooth sailing after that. What type of helmet will your daughter be getting? Let us know when her helmet is in and how she's adjusting. > Hello Everyone! > > My daughter is 7 months old and was recently diagnosed with > Plagiocephaly and torticollis. We started the neck exercises 3 weeks > ago and have already seen a dramatic difference in her neck movement. > > We had the casting done a week ago which broke my heart, and we > should > have the helmet by Monday. > > We were luckly as out insurance is cover most of it (Humana of > florida). Our out of pocket will be 940. > > I look forward to getting to know you all and am very glad I found > this group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi, I see you made a file for Lexi, but it's empty. Do you need help uploadig her pic? > > > Hello Everyone! > > > > > > My daughter is 7 months old and was recently diagnosed with > > > Plagiocephaly and torticollis. We started the neck exercises 3 > weeks > > > ago and have already seen a dramatic difference in her neck > movement. > > > > > > We had the casting done a week ago which broke my heart, and we > > > should > > > have the helmet by Monday. > > > > > > We were luckly as out insurance is cover most of it (Humana of > > > florida). Our out of pocket will be 940. > > > > > > I look forward to getting to know you all and am very glad I > found > > > this group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 Hi! Welcome to the group. WOW insurance is going to pay. Very cool. The neck exercises are so important! I'm glad you are seeing progress so fast. mom to na DOC Grad South Carolina www.thefilyaws.comjma31569 <jma315@...> wrote: Hello Everyone!My daughter is 7 months old and was recently diagnosed with Plagiocephaly and torticollis. We started the neck exercises 3 weeks ago and have already seen a dramatic difference in her neck movement.We had the casting done a week ago which broke my heart, and weshould have the helmet by Monday.We were luckly as out insurance is cover most of it (Humana of florida). Our out of pocket will be 940.I look forward to getting to know you all and am very glad I found this group!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 Hi! Welcome to the group. WOW insurance is going to pay. Very cool. The neck exercises are so important! I'm glad you are seeing progress so fast. mom to na DOC Grad South Carolina www.thefilyaws.comjma31569 <jma315@...> wrote: Hello Everyone!My daughter is 7 months old and was recently diagnosed with Plagiocephaly and torticollis. We started the neck exercises 3 weeks ago and have already seen a dramatic difference in her neck movement.We had the casting done a week ago which broke my heart, and weshould have the helmet by Monday.We were luckly as out insurance is cover most of it (Humana of florida). Our out of pocket will be 940.I look forward to getting to know you all and am very glad I found this group!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 I was shocked with the insurance as well I was so afraid of having to pay it out of pocket! Monday is helmet day so I will post picks when i have them! > > Hello Everyone! > > My daughter is 7 months old and was recently diagnosed with > Plagiocephaly and torticollis. We started the neck exercises 3 weeks > ago and have already seen a dramatic difference in her neck movement. > > We had the casting done a week ago which broke my heart, and we > should > have the helmet by Monday. > > We were luckly as out insurance is cover most of it (Humana of > florida). Our out of pocket will be 940. > > I look forward to getting to know you all and am very glad I found > this group! > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2005 Report Share Posted May 14, 2005 Hi becky, I think we all know what you are going through. I have been at this stupid dr routine for 2 yrs. I finally found a good one, keep searching! If you ever need to talk email me...eve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 >>I wondered if we should try No Phenol since some > of the carrots and spinach is coming out whole in his diapers. No-Fenol can help many kids with that. However, it did not help my son with orange or green foods, which would include carrots and spinach. So definitely consider it, hopefully it will work for you, but it might not. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Hi Cheryl, I just had a THR last week, two things that impressed me were the physical and occupational thearapy that I recieved, it really helped me get back on my feet physically and mentally. Pain managmement is an important part of your recovery, make sure you get all the medication you need, I was a little shy and didn't ask for as much as I should have. > Hi everyone, > And thank you in advance for your answers to ALL the questions I am to > have...I am having THR on June 16th. This is my very first surgery of > any kind and am very anxious of the whole process. But I know it is > time...life with this painful hip and very low range of mobility is > time to be over...I am ready to have a new hip. I am 47, female, and > otherwise in fairly good health. I have lost 23 lbs. in the last 6 > months in preparation for the surgery. I am still probably 20lbs > overweight but can definitely feel a difference with the weight loss. > Now for my first, but not my last question...what is the most > important thing I should know or be aware of with this surgery???? > > Cheryl in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Hi Cheryl, I agree with Big E here. This is NOT the time to try to be brave and sweat out pain. Pain relief helps healing so ask when you have pain. I am one of those people who often don't recognise my distress as " pain " . I have had two or three times recently when hubby suggested painkillers. It was like he turned on the light for me. If you are like me, encourage others to remind you when they think you are struggling - then you make the decision. Only you can know how much pain you are in. Although one nurse was damm good at recognising the symptons in me. Good luck with the surgery. The surgery is often a " miracle cure " for pain. Hugs Aussie Margaret Re: new here > Hi Cheryl, > > I just had a THR last week, two things that impressed me were the > physical and occupational thearapy that I recieved, it really helped > me get back on my feet physically and mentally. Pain managmement is > an > important part of your recovery, make sure you get all the medication > you need, I was a little shy and didn't ask for as much as I should > have. > > > > > Hi everyone, > > And thank you in advance for your answers to ALL the questions I am > to > > have...I am having THR on June 16th. This is my very first surgery > of > > any kind and am very anxious of the whole process. But I know it > is > > time...life with this painful hip and very low range of mobility is > > time to be over...I am ready to have a new hip. I am 47, female, > and > > otherwise in fairly good health. I have lost 23 lbs. in the last 6 > > months in preparation for the surgery. I am still probably 20lbs > > overweight but can definitely feel a difference with the weight > loss. > > Now for my first, but not my last question...what is the most > > important thing I should know or be aware of with this surgery???? > > > > Cheryl in CA > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Hi everyone, My THR surgery is tomorrow (Wed), not till afternoon, but at least it's just a day away. I have been in so much pain lately, can hardly even put weight on the bad side, so I'm ready to go. I hope to report more good results in the next couple weeks. My first THR (left side) went very well and so has recovery. Hoping for just as good news with the right side. Can't wait to just take a walk around my block, maybe in August I'll have that pleasure Re: new here> Hi Cheryl,>> I just had a THR last week, two things that impressed me werethe> physical and occupational thearapy that I recieved, it reallyhelped> me get back on my feet physically and mentally. Painmanagmement is> an> important part of your recovery, make sure you get all themedication> you need, I was a little shy and didn't ask for as much as Ishould> have.>>> > > Hi everyone,> > And thank you in advance for your answers to ALL thequestions I am> to> > have...I am having THR on June 16th. This is my very firstsurgery> of> > any kind and am very anxious of the whole process. But Iknow it> is> > time...life with this painful hip and very low range ofmobility is> > time to be over...I am ready to have a new hip. I am 47,female,> and> > otherwise in fairly good health. I have lost 23 lbs. in thelast 6> > months in preparation for the surgery. I am still probably20lbs> > overweight but can definitely feel a difference with theweight> loss.> > Now for my first, but not my last question...what is the most> > important thing I should know or be aware of with thissurgery????> >> > Cheryl in CA>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Good Luck... I will be thinking of you .... here's to a great surgery and the best recovery.... and Fabulous walk in August all of us will be thinking of you Sue Vogelrenazee@... wrote: Hi everyone, My THR surgery is tomorrow (Wed), not till afternoon, but at least it's just a day away. I have been in so much pain lately, can hardly even put weight on the bad side, so I'm ready to go. I hope to report more good results in the next couple weeks. My first THR (left side) went very well and so has recovery. Hoping for just as good news with the right side. Can't wait to just take a walk around my block, maybe in August I'll have that pleasure Re: new here> Hi Cheryl,>> I just had a THR last week, two things that impressed me werethe> physical and occupational thearapy that I recieved, it reallyhelped> me get back on my feet physically and mentally. Painmanagmement is> an> important part of your recovery, make sure you get all themedication> you need, I was a little shy and didn't ask for as much as Ishould> have.>>> > > Hi everyone,> > And thank you in advance for your answers to ALL thequestions I am> to> > have...I am having THR on June 16th. This is my very firstsurgery> of> > any kind and am very anxious of the whole process. But Iknow it> is> > time...life with this painful hip and very low range ofmobility is> > time to be over...I am ready to have a new hip. I am 47,female,> and> > otherwise in fairly good health. I have lost 23 lbs. in thelast 6> > months in preparation for the surgery. I am still probably20lbs> > overweight but can definitely feel a difference with theweight> loss.> > Now for my first, but not my last question...what is the most> > important thing I should know or be aware of with thissurgery????> >> > Cheryl in CA>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Hello gigs1019..my name is Donna and I am a 39 yr old mom of 2 sons ages 14 and 10, step mom to 3 girls ages 18, 10, and 9 and step grandma to 2 month old grandson!! I have had JRA since age 4 with multiple remissions but it always comes back. LOL. If we had a dollar for all the juvenile arthritis??? Kids get Arthritis and I have arthritis in my pinky comments we would all be financially set on this list. LOL It gets quite bothersome at times and that is why so many of us have jumped on the awareness wagon. We are so glad you joined the group and let me tell you it is an awesome group of folks. If I can ever be of any help please do not hesitate to drop me an email or post to the group. Hugs and smiles! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Good Luck... I will be thinking of you .... here's to a great surgery and the best recovery.... and Fabulous walk in August all of us will be thinking of you >>>Well put Sue and I second that vote Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Lauri, Welcome to the group but sorry you had a need to look us up. Even telling people your young child has JRA most people are still dumbfounded and want to compare it to osteo.Luckily it sounds like your Dr or rheumy,whoever told you Arthur was back,knows what they are talking about.So many times when a child with JRA grows up the rheumy or docs want to argue about it being RA. A WHOLE lot has changed since you were young.There are some newer,very wonderful drugs out there that can get the disease under control quickly. Start re educationg yourself on JRA and how they treat it now. Ask any questions you may have or just vent away. Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 what is the most important thing I should know or be aware of with this surgery???? >>> In my view..... "expecting" a specific out come. I say know the pros & cons.... say a prayer and hope well walking is meant for your future. But you have 2 realize.... there R times... we don't get "what we want"... we get "what's meant 2 B". I wish U the best of luck sweetie and hope that your operation is successful and your recovery rapid & well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Hello, I believe it will be extremely beneficial to see the speech pathologist. Were you referred by a physician or your local health unit? With us, our son at the age of 18 months did not have the 'typical' 8 words or so that is usual to see (and because of a sibling diagnosed earlier with difficulties) we were whisked right into speech therapy. In AS I believe it is relatively uncommon to have no speech (correct me if I am wrong group!) but there can be problems with articulation of tone, delays with the blending of letters, following directions, and certainly the social aspects. AS (Aspergers) does fall under the umbrella of ASD (Autistic Sectrum Disorders) though; so perhaps there may be a link. Your child must be growing frustrated at being non-verbal (as I imagine you must be, as well as concerned) so if you have not made an appointment with a pediatrician, please ask for one from your doctor or medi-centre. I do not know where in BC you are located, but I do have a name of an absolutely wonderful children's doctor in that province: B. Behrmann. Good-luck and please write again. -Velvet > Hi I am a sahm of 2 boys living in BC I am not sure weither my > youngest has Aspergers or not or it may be something else alot of the > websites are quite confusing I found I will describe my youngest to > you and will be looking into it some more he is 3.5 yrs old does not > talk yet at all going to a speech therapist in July just starting to > wave bye bye knows one nursery ryme patty cake and that took approx a > year for him to get the actions no singing yet alot of the websites > explain when they are talking and in school so abit confused if > someone could explain the systems better I would be greatly appreciated Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Thanks for the help and yes I will go talk to his doctor we referred to the speech pathologist by the local health unit FYI we are in Castlegar BC. another thing he is very destrutive I am unablre to put anything in his room he will destroy it we are planning to do up his room this summer and everything has to be bolted to the walls > > Hi I am a sahm of 2 boys living in BC I am not sure weither my > > youngest has Aspergers or not or it may be something else alot of > the > > websites are quite confusing I found I will describe my youngest to > > you and will be looking into it some more he is 3.5 yrs old does not > > talk yet at all going to a speech therapist in July just starting to > > wave bye bye knows one nursery ryme patty cake and that took approx a > > year for him to get the actions no singing yet alot of the websites > > explain when they are talking and in school so abit confused if > > someone could explain the systems better I would be greatly > appreciated Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hi and welcome! Your son might have high-functioning autism. Please note that differentiating between the HFA and AS is like splitting hairs. The children of AS and HFA kids participate on this list. For clinical purposes, mainly, there is one basic distinction between the two: kids with HFA tend to experience language regression, meaning that they have it and then lose it and then regain it again; kids with Asperger's experience no discernable loss of language. And although the kids in both groups develop fairly good language skills eventually, there is a delay in the use of " pragmatic " or social language. Conversations tend not to be reciprocal until kids undergo some sort of social skills training and speech therapy. Even then, pragmatic language might continue to be fairly " wooden " or " rehearsed. " Has your youngest never developed language skills? That would be unusual for this population; I could be wrong about this. Kids with HFA tend to appear to be developing normal language and then at age 18 to 24 months seem to come unraveled, sometimes losing their ability to speak altogether. My son has AS. He began speaking a blue streak at 10 months and never stopped chattering. By two, he appeared to speak fluently. By three, he was delivering little lectures on his favorite topics and was memorizing entire picture books. Now he is nearly eight, and he is devouring chapter books and often reading both the newspaper and adult news magazines. While my son at three or four probably spoke differently from kids with HFA tend to do at that age, many kids with HFA are catching up to him by age seven or eight. From that point on, there does not appear to be an appreciable difference between the two diagnoses. Some kids with Kanner's (regressive) autism -- sometimes referred to as " not-so-high-functioning autism " --experience more severe loss or lack of language. On another list I belong to, after several years of therapy, many of these children are fast catching up with children with AS and HFA. I've met kids whose autism was initially much more severe than my son's ever was but who are now virtually indistinguishable in terms of their language skills. This is an exciting time. Therapies are more successful with many of our kids than ever before. It is not unheard of for kids with Kanner's autism to score about 50 on nonverbal IQ tests and then jump to well over 100 on the WISC-III after some years in therapy. Of course, there is a lot more to autism than language difficulties. Does your son engage in repetitive behaviors? Does he " stim " ? Does he flap his hands, pick at himself, rock, mutter or echo overheard phrases under his breath, have poor or brief eye contact, play with parts of toys, spin a lot, either rush to get messy or avoid getting messy at all costs? Does he have difficulty sleeping at night? Any problems with toileting? Any problems with auditory sensitivity -- aversion to loud or various sounds? T. mom of Sasha, 7.5, AS, BP, mild CP and Gena, 5 At 03:43 AM 6/12/2005 +0000, you wrote: >Hi I am a sahm of 2 boys living in BC I am not sure weither my >youngest has Aspergers or not or it may be something else alot of the >websites are quite confusing I found I will describe my youngest to >you and will be looking into it some more he is 3.5 yrs old does not >talk yet at all going to a speech therapist in July just starting to >wave bye bye knows one nursery ryme patty cake and that took approx a >year for him to get the actions no singing yet alot of the websites >explain when they are talking and in school so abit confused if >someone could explain the systems better I would be greatly appreciated > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Just a couple of minor corrections on 's post. Hope she doesn't mind!! My additions are in caps. On Jun 14, 2005, at 3:09 AM, wrote: > Your son might have high-functioning autism. Please note that > differentiating between the HFA and AS is like splitting hairs. The > children (PARENTS?) of AS and HFA kids participate on this list. For > clinical > purposes, mainly, there is one basic distinction between the two: kids > with > HFA tend to experience language regression, meaning that they have it > and > then lose it and then regain it again; (OR JUST HAVE A DELAY, YET ONCE > THEY SPEAK THEY PROGRESS NORMALLY WITH SPEECH) kids with Asperger's > experience no > discernable loss of language. And although the kids in both groups > develop > fairly good language skills eventually, there is a delay in the use of > " pragmatic " or social language. Conversations tend not to be reciprocal > until kids undergo some sort of social skills training and speech > therapy. > Even then, pragmatic language might continue to be fairly " wooden " or > " rehearsed. " Libby Lou...how 'bout you? with my ABC's and 1,2,3's: Middle J, 6, AS/HFA , anxiety Big J 10, GAD, BP, OCD Small Fry J as NT as it gets, for now dh+ AS x fixated on computers= $$ " Behaviorism is as American as rewarding children with apple pie. We’re a busy people, with fortunes to make and lands to conquer. We don’t have time for theories or complications: Just give us techniques that work. ... if relying on bribes and threats succeeds in making children obey, then there’s no need to ask, “But for how long does it work? And at what cost?”- Alfie Kohn Quote Link to comment Share on other sites More sharing options...
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