Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Thank you for your e-mail. So maybe there is a little hope??? I hope that you are doing well. I am glad that others take the time to inform me of treatments and how long it takes to get maximim relief. That is something that the Doctors I think sugarcoat sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Hello Danni nice to meet you,but sorry your not doing well.Im same age and was diagnosed in 2002.The prednisone has not worked at all?Some here do not respond to prednisone,it should have releived some of the pain soon after taking.Is there any hope of maybe trying one of the biologics,they seem to work best for most here.Im not sure about the plauquinil but yes the Methotextrate takes like 6 weeks before any noticable difference and longer for maximum results.I hope the fevers and pains go away soon,take care. d.Canada New member > To Whom It may Concern, > I am writing to give the group some information about > myself. My name is Danni Koche'. I am 33 years old and will turn 34 on > 7/17/05 > ( gosh how time flies). I was recently diagnosed with still's disease > after 2 > years of test after test and " diagnosis " of other diseases. I have been a > Nurse since I was 17 and am working to get my degree in CSI. I have had > alot of > joint pain mostly in my wrists, elbows and hips along with an enlarged > liver > and very high fevers. Before I was diagnosed I felt like all of my pain > was > in my head and had a tough time dealing with it. I am getting married on > 11/19/05 and since I was diagnosed I feel like maybe my Fiance should not > suffer > with me. I feel so confused about treatment options and have been started > on > prednisone,methotrexate and plauquinil. I am still having difficulties > but my > Doctor tells me that it takes a while for treatment to work. I am looking > forword to hearing from others with this disease and hope that I can > learn to > deal with it . I hope to one day be able as a Nurse to help others who > are > suffering with this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Welcome Danni ! I have had this disease for a while but have been lucky in that recently I only get the weakness. (my joint pain is there but quite minor thank God) I know rest and stress relief is important... oh yes it is.. Easier said than done tho. You will find plenty of friends here. Let us know how it all goes...and congratulations on getting married!! Hugs Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Welcome Danni; My nickname is Melt, diagnosed since 1977. For me the first years were the worst and it got better after. Be sure to take care of your joints and get lots of rest when you can. Congratulations on your upcoming nuptials and I pray your fiancee will understand your illness and give you lots of support. We are here for you to lend friendship and support anytime. Smiles, ----- Original Message ----- From: Blondedolphin172@... To Whom It may Concern, I am writing to give the group some information about myself. My name is Danni Koche'. I am 33 years old and will turn 34 on 7/17/05 ( gosh how time flies). I was recently diagnosed with still's disease after 2 years of test after test and " diagnosis " of other diseases. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Dear Danni, Welcome to our group. I'm sorry you were diagnosed with Stills Disease, but wish it hadn't taken so long. A bit of relief does come with giving it a name. You will find a lot of support in our group! My name is Barbara, 46, and I've had Stills Disease for 17 years. I used to be a RN, but have been disabled and was unable to keep up with the continuing education. So I let my license go, sadly. I became sick a year after getting married. I made good money, was trim, and very active. This illness changed me, but it didn't change the love and devotion and I have. If your fiancee continues to give his love and support, then marry! He might be devastated to lose your relationship. Find out as much as you can about this disease. Get your fiancee involved. Take care of yourself and again, welcome to our family! Much love, Barbara Gardner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Welcome Danni, We are glad to have you and hope you are well soon. There are many of us here and many that have improved and moved on. Lynn > > From: Blondedolphin172@... > Date: 2005/06/07 Tue PM 10:44:12 EDT > To: stillsdisease > Subject: New member > > To Whom It may Concern, > I am writing to give the group some information about > myself. My name is Danni Koche'. I am 33 years old and will turn 34 on 7/17/05 > ( gosh how time flies). I was recently diagnosed with still's disease after 2 > years of test after test and " diagnosis " of other diseases. I have been a > Nurse since I was 17 and am working to get my degree in CSI. I have had alot of > joint pain mostly in my wrists, elbows and hips along with an enlarged liver > and very high fevers. Before I was diagnosed I felt like all of my pain was > in my head and had a tough time dealing with it. I am getting married on > 11/19/05 and since I was diagnosed I feel like maybe my Fiance should not suffer > with me. I feel so confused about treatment options and have been started on > prednisone,methotrexate and plauquinil. I am still having difficulties but my > Doctor tells me that it takes a while for treatment to work. I am looking > forword to hearing from others with this disease and hope that I can learn to > deal with it . I hope to one day be able as a Nurse to help others who are > suffering with this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi, Danni, my name is Gail and I'm 36 and have had Still's since I was 18. Melt is right, sometimes the beginning of treatment can be tough due to the fact that they need to find the right treatment plan for you. It does take a while for the meds to work, so hang in there, get plenty of rest and read up on it! I am currently in a flare, taking Methotexate, Pred and Remicade. I have had several periods of remmission in my life (always look forward to those!) and every time I flare, I think scary thoughts. But, now that they finally know what it is (I also went 8 years w/out a correct DX) the fear has lessened because now they know what to do. Please ask anything you need to. Information is key, as well as support. Good luck with your upcoming marriage... Gail Blondedolphin172@... wrote: To Whom It may Concern, I am writing to give the group some information about myself. My name is Danni Koche'. I am 33 years old and will turn 34 on 7/17/05 ( gosh how time flies). I was recently diagnosed with still's disease after 2 years of test after test and " diagnosis " of other diseases. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Marie, Welcome, so sorry your niece is suffering so. Sounds like she is on the most typical drugs for this and I personally can't say that there are alternatives. This is a tough disease, but i do know that many recover or go into remission also. Good luck to you both and feel free to ask any questions at all. Lynn > > From: CailinBeag@... > Date: 2005/06/08 Wed PM 10:04:05 EDT > To: stillsdisease > Subject: New Member > > Hi all, > My name is Marie and I live in New York. My whole family lives in > Ireland where my niece(12yrs old) was diagnosed Nov 2004 wth JRV and Still's > Disease. She tested positive to a blood test after 2 yrs of misdiagnosis, pain & > rashes. I never heard of it before this and I can't find anyone in NY who knows > anything, I even have friends in medical who can't tell me anything. I am > looking to find out how I can help her, support her or get her some answers. > > My niece Shona is on the following medication, I don't even know what these > medication do or if there is any alternative to them. Maybe someone can shed > some light. > Daily: > Prednesol 50mg > losec 40mg > voltarol 50mg > naprosyn 250mg > folic acid 40mg > tegretol 5mg > codeine 60mg > durogesic 25mg every 72hrs- patch > Fridays- Methrotrexate 25mg. > > I hope I haven't overloaded you all with too much info. I just don't know > where to start. I watch how you support one another and I would love to be part > of it. > Thank you so much, > Marie- NY > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Dear Marie; We have brochures available by sending your snail mail address to Bob at oldgoat378@... The brochures explain about Stills disease and are free for the asking. Maybe this could help your family and or doctors understand better. Good day to you, Melt ----- Original Message ----- From: CailinBeag@... My name is Marie and I live in New York. My whole family lives in Ireland where my niece(12yrs old) was diagnosed Nov 2004 wth JRV and Still's Disease. I even have friends in medical who can't tell me anything. I am looking to find out how I can help her, support her or get her some answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 hi blondedolphin, my name is lauri i have JRA, i am 31 yrs old, if youd like yo keep in touch , it might be nice to talk to someone who knows what were going through Blondedolphin172@... wrote: To Whom It may Concern, I am writing to give the group some information about myself. My name is Danni Koche'. I am 33 years old and will turn 34 on 7/17/05 ( gosh how time flies). I was recently diagnosed with still's disease after 2 years of test after test and " diagnosis " of other diseases. I have been a Nurse since I was 17 and am working to get my degree in CSI. I have had alot of joint pain mostly in my wrists, elbows and hips along with an enlarged liver and very high fevers. Before I was diagnosed I felt like all of my pain was in my head and had a tough time dealing with it. I am getting married on 11/19/05 and since I was diagnosed I feel like maybe my Fiance should not suffer with me. I feel so confused about treatment options and have been started on prednisone,methotrexate and plauquinil. I am still having difficulties but my Doctor tells me that it takes a while for treatment to work. I am looking forword to hearing from others with this disease and hope that I can learn to deal with it . I hope to one day be able as a Nurse to help others who are suffering with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Dear Barbara, I wanted to let you know that my future husband read your e-mail to me. He started to cry . Your e-mail was so close to how I feel right now. I ,like you, love being a RN but know that it can be easily taken. My future husband says to tell you that your story has touched us both. See he feels that no matter how many times I go to the doctor or hospital he will never leave. I know he loves me more than anything in this world and you have given me hope that our love can survive. I want you to know that when I read your e-mail I for the first time feel that this disease is a fight that I don't have to fight alone. Thank You and please keep in touch with me. God Bless you and your family . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Welcome Krista! We are so glad to have you and would love to see you in Las Vegas too. There are quite a few Canadians in the group actually too!! So sorry you are having a rough time but you have found the best place to be. Lynn in Wisconsin, USA -- New Member Hello all, My name is Krista Soetaert I have been on the mailing list for about a week I received so many emails the first day that I seem to have skipped the email that asked me to introduce myself. So after reading another new members information I decided I better go back to the beginning and see what the heck I missed. So here it goes. I am 36 yrs old (just turned on June 14) not really impressed with the fact that I am this old. (luckily I try not to act my age) My grandmother always tells me you are only as old as you act (so maybe I am 25). I live in Grande Prairie Alberta Canada, and after reading all of your emails I am very grateful for our Health Care system. Both my husband and myself have employee benefits which basically pays for all of my medications. I don't have to pay for doctors visits that is paid from Alberta Health Care. I was very distressed to hear all of the incredible stories about the cost of medicare, as most of the emails that I have read, it sounds like the majority of you live in the United States. I am an Assistant to the Deputy Superintendent of Catholic Schools. I have been married for 12 years, my husband's name is . I have two beautiful boys, Tanner (12) and Colton (9). I am very lucky. I did write to Sini earlier this week because I felt comfortable talking about JRA as I had this when I was 6 years old. I went into remission for over 20 years. When I was 28 years old I got really sick again. Luckily my mom was there for me and she told my doctor's that I had JRA before which was a good thing. I had a fabulous doctor who listened to her. Where I live we do not have any RD so she called Edmonton (bigger city) when I got fluid on the heart and lungs. The doctor's there told my doctor to air vac me to Edmonton. Of course still no diagnosis at this time, but after the RD saw me she asked me if I was sure that I had JRA when I was 6 ( at this point I was a little testy so I said well that's what they told me and my family), she asked me this BEFORE reading my chart, after she read my chart she said you have SD. I thought she maybe should have read my chart first but whatever. Finally after a total of 1 month I was back home. I seem to be very lucky. The predn. worked. So at this time I take Celebrex very rarely. Of course about 1 and a half weeks ago I was diagnosised with Fibromyalgia ( just when you think alright I am doing Ok). Right now I am working half days that works so far. I come home from work and nap then go and pick up my children. I am loving that. Thank you all for the great information. I am trying to get the money together to come to the Stills conference in Las Vegas. Hope I can come. Sorry about the length of this email apparently I am a little wordy tonight. Krista Grande Prairie, AB Canada Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Dear Krista, Welcome to our wonderful family. You have definitely found an oasis in the midst of the chaos! I am Larry from North Carolina and have been diagnosed since Feb. of this year. Keep coming back to us and let us know what you need or just vent. Don't worry about being wordy. You say whatever you need to for however long you need. Many Blessings! Larry B. Krista Soetaert wrote: Hello all, My name is Krista Soetaert I have been on the mailing list for about a week I received so many emails the first day that I seem to have skipped the email that asked me to introduce myself. So after reading another new members information I decided I better go back to the beginning and see what the heck I missed. So here it goes. I am 36 yrs old (just turned on June 14) not really impressed with the fact that I am this old. (luckily I try not to act my age) My grandmother always tells me you are only as old as you act (so maybe I am 25). I live in Grande Prairie Alberta Canada, and after reading all of your emails I am very grateful for our Health Care system. Both my husband and myself have employee benefits which basically pays for all of my medications. I don't have to pay for doctors visits that is paid from Alberta Health Care. I was very distressed to hear all of the incredible stories about the cost of medicare, as most of the emails that I have read, it sounds like the majority of you live in the United States. I am an Assistant to the Deputy Superintendent of Catholic Schools. I have been married for 12 years, my husband's name is . I have two beautiful boys, Tanner (12) and Colton (9). I am very lucky. I did write to Sini earlier this week because I felt comfortable talking about JRA as I had this when I was 6 years old. I went into remission for over 20 years. When I was 28 years old I got really sick again. Luckily my mom was there for me and she told my doctor's that I had JRA before which was a good thing. I had a fabulous doctor who listened to her. Where I live we do not have any RD so she called Edmonton (bigger city) when I got fluid on the heart and lungs. The doctor's there told my doctor to air vac me to Edmonton. Of course still no diagnosis at this time, but after the RD saw me she asked me if I was sure that I had JRA when I was 6 ( at this point I was a little testy so I said well that's what they told me and my family), she asked me this BEFORE reading my chart, after she read my chart she said you have SD. I thought she maybe should have read my chart first but whatever. Finally after a total of 1 month I was back home. I seem to be very lucky. The predn. worked. So at this time I take Celebrex very rarely. Of course about 1 and a half weeks ago I was diagnosised with Fibromyalgia ( just when you think alright I am doing Ok). Right now I am working half days that works so far. I come home from work and nap then go and pick up my children. I am loving that. Thank you all for the great information. I am trying to get the money together to come to the Stills conference in Las Vegas. Hope I can come. Sorry about the length of this email apparently I am a little wordy tonight. Krista Grande Prairie, AB Canada Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Welcome Krista, Good to have you join us. Please feel at home with us. Smiles, Melt ----- Original Message ----- From: Krista Soetaert My name is Krista Soetaert I have been on the mailing list for about a week Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 , I'm amening your yucks! Call me sheltered, but I had no idea *anyone* would ever wanna touch their poop, much less do things with it. I have sensory dysfunction and the LAST thing I want from my poop is anything but to see it go down the commode! ROFL! Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 hi tracy it was hard potty training my daughter but we finally got it. it took me one weekend to do this. it may take u a little longer but be patient, very patient. This is very hard on you but autistic children will learn and eventually catch on. Every hour take her to the restroom, every hour, even throughout the night and see what happens. McKinless wrote: Hi, I recently joined this group. My 10 yr old daughter has autism, is non verbal, not fully potty trained and probably mentally retarded. (although there are days i swear she knows exactly what I'm saying and what she's supposed to do) She's been on a gfcf (gluten/casein free) diet since she was 4. It has helped a lot with her health issues (intestinal discomfort, chronic respiratory infections) and behavior as well. She used to bang her head and arms, scratch herself, scream for hours, tantrum no end, almost no eye contact, etc. All of these stopped within 6 months. Her ability to learn increased as well. Now, 6 yrs later, she uses sign language and pecs, can read and write at a kindergarten level, do math at kind. level. She can repeat sounds and words when prompted, but does not have any spontaneous language. I have tried for YEARS to get her to poop in the potty. She gets the peepee part but not the poop. Very frustrating, very gross (I spend 2 out of 3 mornings cleaning up after her nite time painting experiments). We've had behaviorists in our home, read every book and article, nothing works. All I can say is YUK YUK YUK!!!!There. I feel better now. Thanks. __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Autism_in_Girls-subscribe ------------------------ Autism_in_Girls-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hello Kim, First off I would like to welcome you to the group. This is a great group with both wonderful parents and women on the spectrum. I hope this does not sound harsh. But, its obvious you suspect a problem in your daughter(s) or you would not be here. As a mom its your responsibility to get any thing you think is not right checked out by a professional. If what your daughter(s) are going through is a phase then that's great but if its not you just ignored a problem where early intervention is key. As far as allergies go they are very common in kids on the spectrum and I am sure lots of moms on here will have advice for that. We suspect allergies in my daughter as well and we are going to be trying the GF/CF diet soon. I have learned as a mom that its always best never to ignore your gut. My problem was I had a gut feeling about my daughter and I had a heck of a time getting the doctors to listen and getting a diagnosis (we finally got one last November). My daughter is almost 4 1/2 so it took us almost 3 1/2 years to find the right doctor. I would encourage you to start speech with your younger daughter. I would also encourage you to get you older daughter evaluated by a psychologist for her emotional problems. Like I said earlier its best to err on the side of caution. Good luck and welcome. Please keep us updated. Missy ('s mom) new member Hi, I'm new here. I'm here because I am concerned about my 19 month old daughter n. At her 18 month old check-up, the doctor asked me if I would consider a speech therapist because she makes sounds and gestures, but no intelligible words. I chose to wait until she turns 2 in March, as I know some kids are " late bloomers " . She's already milk allergic and I have not ruled out a wheat connection either. She's very sensitive to things. She started exhibiting diaper problems in August while my husband was at a work convention across the country, but now it's more frequent (taking off her Pull-Up, she's pooped and peed on the floor, she tries tasting her own urine and feces) .... she points at what she likes but does not speak. Sometimes seems not to hear us but other times shows recognition. Back or tummy rubbing, brushing hair, or foot and leg rubbing calm her down. She imitates sirens and sounds, loves lights and motion, loves to dance, loves remotes and electronic/digital things, shrieks/ " barks " a lot, laughs for " no reason " , cries and screams for " no reason " ..... other times seems completely normal. Night time has gotten difficult (from afternoon to night) as she gets rammy and seems to " flip out " ... hard to explain that behavior. When we're out in public, she rarely exhibits that behavior, but sometimes she does .... and then people just stare at her and me, wondering " what is her problem? " ... how do I explain, I don't know. I am hesitant to call in specialists because it could just " be a phase " ..... I know what the medical go-round is like (because of her food sensitivities) and I don't want to put her through that again .... and I'm hoping she'll grow out of all of it and do things when she is ready to, like she did with walking (on Father's Day). (I know two other autistic children, one is PDD-NOS, and she's exhibiting similar behaviors to him.) My older child will be 8 on Thanksgiving and there was some question with her on SID or possibly Asperger's, but no pressure so far to have her evaluated. She excels in school, but has emotional and mental problems that I'm trying to help her with. With her, also, I'm hoping she'll " grow out of it " and that things will even out. I'm here hoping to read other posts and see if I recognize my children in other parents' concerns .... I've had a sick feeling in my gut but I'm hoping time will smooth things out. thanks, Kim ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/475 - Release Date: 10/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Kim, welcome. I totally understand your fears. I have 3 daughters, 9,7, and 4. My 7 yr old has autism. I mean this in the most kind way, but waiting to get some professional help is one of the worst things you could do *IF* (and I stress IF) she has autism or similar disorder. The reason is, a speech therapy session is harmless. If your daughter is typical, there is nothing her sitting through a play session (which is what speech sessions are) is going to harm her development. On the flip side, *if* she has autism, you getting early intervention could make a SIGNIFICANT change for the better. My daughter is 7 and doing pretty well right now. I have friends who waited until 3, 4, 5 yrs old to get help and their children aren't doing nearly as well. Your daughter might just be developing in her own way. And she might not. Don't let the fear, which is overwhelming, keep you from getting her the help she needs, even if she ends up not needing any help. You can call your state's early intervention system (found in blue pages) and request a developmental assessment. It costs nothing. *IF* she's found to have delays, and it sounds her speech might be a little delayed (lots of kids can have speech delays and still not have autism) then you can get speech therapy sessions free through your early intervention. As to the symptoms you mentioned, playing with her waste isn't in and of itself a sign; many kids are curious about how their body works and curious about what comes out of it. Pointing is a very good sign. Here's some stuff she should be able to do for her age (taken from ANDI poster project): “Is Your Child At Risk For Autism?†Does your 18-month-old child's language development seem slow? Has he lost words that he had once mastered? Is he unable to follow simple commands such as " Bring me your shoes? " When you speak to him does he look away rather than meet your gaze? Does he answer to his name? Do you or others suspect hearing loss? Does he have an unusually long attention span? Does he often seem to be in his own world? At 18 months old, a child will typically do the following: * Point to objects * Interact with his siblings * Bring you items to look at * Look directly at you when you speak to him * Follow your gaze to locate an object when you point across the room * Engage in " pretend play " such as feeding a doll or making a toy dog bark HTH, Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Please remember one thing. A specialist doesn't necessarily mean " always right. " You have to remain calm and centered in your thinking to the best you can. Trust your instinct and inner judgment. I can also say for autism that time does not ever smooth things out, but rather makes things worth if the autism isn't properly diagnosed or handled. If you have a feeling you child is autistic, have the neuropsychological evaluation. new member Hi, I'm new here. I'm here because I am concerned about my 19 month old daughter n. At her 18 month old check-up, the doctor asked me if I would consider a speech therapist because she makes sounds and gestures, but no intelligible words. I chose to wait until she turns 2 in March, as I know some kids are " late bloomers " . She's already milk allergic and I have not ruled out a wheat connection either. She's very sensitive to things. She started exhibiting diaper problems in August while my husband was at a work convention across the country, but now it's more frequent (taking off her Pull-Up, she's pooped and peed on the floor, she tries tasting her own urine and feces) .... she points at what she likes but does not speak. Sometimes seems not to hear us but other times shows recognition. Back or tummy rubbing, brushing hair, or foot and leg rubbing calm her down. She imitates sirens and sounds, loves lights and motion, loves to dance, loves remotes and electronic/digital things, shrieks/ " barks " a lot, laughs for " no reason " , cries and screams for " no reason " ..... other times seems completely normal. Night time has gotten difficult (from afternoon to night) as she gets rammy and seems to " flip out " ... hard to explain that behavior. When we're out in public, she rarely exhibits that behavior, but sometimes she does .... and then people just stare at her and me, wondering " what is her problem? " ... how do I explain, I don't know. I am hesitant to call in specialists because it could just " be a phase " ..... I know what the medical go-round is like (because of her food sensitivities) and I don't want to put her through that again ..... and I'm hoping she'll grow out of all of it and do things when she is ready to, like she did with walking (on Father's Day). (I know two other autistic children, one is PDD-NOS, and she's exhibiting similar behaviors to him.) My older child will be 8 on Thanksgiving and there was some question with her on SID or possibly Asperger's, but no pressure so far to have her evaluated. She excels in school, but has emotional and mental problems that I'm trying to help her with. With her, also, I'm hoping she'll " grow out of it " and that things will even out. I'm here hoping to read other posts and see if I recognize my children in other parents' concerns .... I've had a sick feeling in my gut but I'm hoping time will smooth things out. thanks, Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi kim . I know it must scary to know that you daughter may have autism. But I agree with Missy. It is better to know so that if needed early intervention will bring much results. some things they may not grow out of. Once you know for sure then you can determine what is the course of action to take. please do not wait too long. Deb Missy and Brent Pearsall wrote: Hello Kim, First off I would like to welcome you to the group. This is a great group with both wonderful parents and women on the spectrum. I hope this does not sound harsh. But, its obvious you suspect a problem in your daughter(s) or you would not be here. As a mom its your responsibility to get any thing you think is not right checked out by a professional. If what your daughter(s) are going through is a phase then that's great but if its not you just ignored a problem where early intervention is key. As far as allergies go they are very common in kids on the spectrum and I am sure lots of moms on here will have advice for that. We suspect allergies in my daughter as well and we are going to be trying the GF/CF diet soon. I have learned as a mom that its always best never to ignore your gut. My problem was I had a gut feeling about my daughter and I had a heck of a time getting the doctors to listen and getting a diagnosis (we finally got one last November). My daughter is almost 4 1/2 so it took us almost 3 1/2 years to find the right doctor. I would encourage you to start speech with your younger daughter. I would also encourage you to get you older daughter evaluated by a psychologist for her emotional problems. Like I said earlier its best to err on the side of caution. Good luck and welcome. Please keep us updated. Missy ('s mom) new member Hi, I'm new here. I'm here because I am concerned about my 19 month old daughter n. At her 18 month old check-up, the doctor asked me if I would consider a speech therapist because she makes sounds and gestures, but no intelligible words. I chose to wait until she turns 2 in March, as I know some kids are " late bloomers " . She's already milk allergic and I have not ruled out a wheat connection either. She's very sensitive to things. She started exhibiting diaper problems in August while my husband was at a work convention across the country, but now it's more frequent (taking off her Pull-Up, she's pooped and peed on the floor, she tries tasting her own urine and feces) .... she points at what she likes but does not speak. Sometimes seems not to hear us but other times shows recognition. Back or tummy rubbing, brushing hair, or foot and leg rubbing calm her down. She imitates sirens and sounds, loves lights and motion, loves to dance, loves remotes and electronic/digital things, shrieks/ " barks " a lot, laughs for " no reason " , cries and screams for " no reason " ..... other times seems completely normal. Night time has gotten difficult (from afternoon to night) as she gets rammy and seems to " flip out " ... hard to explain that behavior. When we're out in public, she rarely exhibits that behavior, but sometimes she does .... and then people just stare at her and me, wondering " what is her problem? " ... how do I explain, I don't know. I am hesitant to call in specialists because it could just " be a phase " ..... I know what the medical go-round is like (because of her food sensitivities) and I don't want to put her through that again ..... and I'm hoping she'll grow out of all of it and do things when she is ready to, like she did with walking (on Father's Day). (I know two other autistic children, one is PDD-NOS, and she's exhibiting similar behaviors to him.) My older child will be 8 on Thanksgiving and there was some question with her on SID or possibly Asperger's, but no pressure so far to have her evaluated. She excels in school, but has emotional and mental problems that I'm trying to help her with. With her, also, I'm hoping she'll " grow out of it " and that things will even out. I'm here hoping to read other posts and see if I recognize my children in other parents' concerns .... I've had a sick feeling in my gut but I'm hoping time will smooth things out. thanks, Kim ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/475 - Release Date: 10/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Kim! Welcome to the group. This is a wonderful group of people and we are all caring, full of information, but at times a little opinionated. It is hard not to be when we very frequently feel we have to explain ourselves and our children to the whole world. But even with our strong opinions, we try very hard to be curtious and understanding of everyone else and their views and opinions, kind of a listen to me nicely and I will do the same for you kind of apporuch. So far it works out well. It is hard for me to believe, but I have already been a part of this group for a little over a year. And I have learned more from this support group and come here to vent, pour my heart out, and get prayers more than anywhere else. A lot of us here have been abused, have family who have disowned us, have had family think we are crazy because our kids have autism and they don't know how to deal with it, and so much more. So, we have all been here for one another a lot and would love to be here for you, no matter how little or large your trials may be. As far as your doctor offering speech... Oh my goodness, please say yes. It has taken me years to get my doctor to even sign a piece of paper saying that he refers my kids for speech and I have still had a hard time getting a speech therapist who stays in my area or then me moving twice and having to get a new doctor and a new therapist for them etc. Take whatever you can get! Speech will never hurt your daughter. Wether she is just a late bloomer or has Autism, Aspergers, or whatever, speech can help. Many of the things that you are mentioning to me sound like your little girl may very well be on the spectrum somewhere. I most definately with what you told us would get her in to be evaluated by the Early Intervention program in your area. If you tell us what area you are in there is bound to be someone from your state who could help direct you to the best places, doctors and services. I am in the Portland, Oregon area just to let you know. Once both of your daughters have been evaluated and properly placed or at least that you have an idea of what type of symptoms they seem to fit best, then you have more options. If you are not happy with services, like I have not been many times, you can decline the services and home teach or do your own program or hire your own therapists, but if you don't even now, you are not freeing yourself or your daughters, but rather limiting your whole family to what you now know. I promise I am not trying to be mean or pushy, it is just that I put it off for a year with the same sort of warning signs as you have, and I regret that a little now. We have still made huge progress as a family and we have moved forward a lot on the autism factor, but it would have been " that much " easier had we started earlier. A little background on us. My name is Esther, I have two daughters with Autism ages 5 in a week and 3. I have a baby son age 16months that definately shows signs, but not nearly as much as his sisters and I have had him evaluated, but the evaluators say he is not Autistic, due to his good eye contact and pretend play. I just laugh and smile to myself and say wow what a good job I have done with him. Because I can tell that he is on the spectrum now that I know a lot about it, but I worked with him from day one on his eye contact, and basicly do all the same things with him as with my girls. He rocks and spins in circles on the floor and kills his food before he eats it, he doesn say anything yet at all, he lines up his cars all day long and could care less to ever do anything else. He has no fear nor a shy bone in his body and loves to climb and does well at it. He won't even eat if he has to touch his food himself, but doesn't want me to feed him. So many things like this that are just like my girls were, only some of these things my girls never did, so I know it is not just learned behaviors. But I guess to me, since I am doing my own program and know what to look for and do now, it doesn't matter as much if I push the ESD here to give us services. But for you, where you are very new at this and need a jumpstart and to learn where to get services what services there are and about the different ideas and theories and whatever I would recomend getting you daughter evaluated. However, I must say this was the biggest step coming to this support group you probably could have done for your family. Because you get emotional and friendship support and that makes you stronger, you get things off your chest and get questions answered and here you can get probably more help, ideas and support than anywhere else... at least I have. However getting a diagnosis helps you to have your children qualify for programs, camps, SSI, speech, preschool and all sorts of things if they are in fact on the spectrum that could also greatly assist your family. So, Again I can't stress enough to keep your options open, your mind accepting of whatever happens and what the outcome is, and getting your girls started on the right path of finding out what if anything they have and where to go next and so on. I have been facing some huge challenges with the non-autism things of my family life right now and so honestly have not posted in a while, and it may be a while again before I post, but know that you are welcome here and you are not alone. Come here and talk to us anytime. Sincerely, Esther --- Kim wrote: > Hi, I'm new here. I'm here because I am concerned > about my 19 month > old daughter n. At her 18 month old check-up, > the doctor asked me > if I would consider a speech therapist because she > makes sounds and > gestures, but no intelligible words. I chose to wait > until she turns 2 > in March, as I know some kids are " late bloomers " . > She's already milk > allergic and I have not ruled out a wheat connection > either. She's > very sensitive to things. She started exhibiting > diaper problems in > August while my husband was at a work convention > across the country, > but now it's more frequent (taking off her Pull-Up, > she's pooped and > peed on the floor, she tries tasting her own urine > and feces) .... she > points at what she likes but does not speak. > Sometimes seems not to > hear us but other times shows recognition. Back or > tummy rubbing, > brushing hair, or foot and leg rubbing calm her > down. She imitates > sirens and sounds, loves lights and motion, loves to > dance, loves > remotes and electronic/digital things, > shrieks/ " barks " a lot, laughs > for " no reason " , cries and screams for " no reason " > ..... other times > seems completely normal. Night time has gotten > difficult (from > afternoon to night) as she gets rammy and seems to > " flip out " ... hard > to explain that behavior. When we're out in public, > she rarely > exhibits that behavior, but sometimes she does .... > and then people > just stare at her and me, wondering " what is her > problem? " ... how do > I explain, I don't know. > > I am hesitant to call in specialists because it > could just " be a > phase " ..... I know what the medical go-round is > like (because of her > food sensitivities) and I don't want to put her > through that again > .... and I'm hoping she'll grow out of all of it and > do things when > she is ready to, like she did with walking (on > Father's Day). (I know > two other autistic children, one is PDD-NOS, and > she's exhibiting > similar behaviors to him.) > > My older child will be 8 on Thanksgiving and > there was some > question with her on SID or possibly Asperger's, but > no pressure so > far to have her evaluated. She excels in school, but > has emotional and > mental problems that I'm trying to help her with. > With her, also, I'm > hoping she'll " grow out of it " and that things will > even out. > > I'm here hoping to read other posts and see if I > recognize my children > in other parents' concerns .... I've had a sick > feeling in my gut but > I'm hoping time will smooth things out. > > thanks, > Kim > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Kim, Our story is a bit similar to yours. Our 3yr old daughter had strange behaviours from birth. We always knew something was wrong. We have 5 daughters and she is no. 4. She was like a caged animal as my husband put it. Instead of speaking she'ld growl or squeel endlessly. Humming was quite common. She couldn't play. She'ld follow her other sisters around without joining in. Like you we are very sure she's autistic but I can't bring myself to have her diagnosed. We accidently stumbled onto a diet that I wanted to try for our eldest daughter 15, who has undiagnosed adhd. The schools wanted us to have her diagnosed but we wouldn't. Anyway we all started the diet and after a couple of weeks Becky was trying to sing a song while she stacked blocks. It was a song I used to sing when we were doing this. The words weren't clear but I could tell what it was by the rythm. Slowly she seems to be emerging from her shell. Each time we done something she'ld come out a little bit more. Now she's no different than her sibblings. Her speech is that she holds conversations, she intitiates and she's starting to read, write and do maths. It will be 2 years since she started speaking just after Christmas this year. Every now and than we still think about speech therapy as it still isn't very clear. If she has things to eat that she shouldn't she starts to revert back. The squeeling starts, she can get violent, her sleeping goes haywire and she prefers to be on her own. Little by little she has improved enough to keep us going the way we are. If she totally regressed back to being like a caged animal again we would look into other methods of help. This is just another point of view. Tracey new member Hi, I'm new here. I'm here because I am concerned about my 19 month old daughter n. At her 18 month old check-up, the doctor asked me if I would consider a speech therapist because she makes sounds and gestures, but no intelligible words. I chose to wait until she turns 2 in March, as I know some kids are " late bloomers " . She's already milk allergic and I have not ruled out a wheat connection either. She's very sensitive to things. She started exhibiting diaper problems in August while my husband was at a work convention across the country, but now it's more frequent (taking off her Pull-Up, she's pooped and peed on the floor, she tries tasting her own urine and feces) .... she points at what she likes but does not speak. Sometimes seems not to hear us but other times shows recognition. Back or tummy rubbing, brushing hair, or foot and leg rubbing calm her down. She imitates sirens and sounds, loves lights and motion, loves to dance, loves remotes and electronic/digital things, shrieks/ " barks " a lot, laughs for " no reason " , cries and screams for " no reason " ..... other times seems completely normal. Night time has gotten difficult (from afternoon to night) as she gets rammy and seems to " flip out " ... hard to explain that behavior. When we're out in public, she rarely exhibits that behavior, but sometimes she does .... and then people just stare at her and me, wondering " what is her problem? " ... how do I explain, I don't know. I am hesitant to call in specialists because it could just " be a phase " ..... I know what the medical go-round is like (because of her food sensitivities) and I don't want to put her through that again ..... and I'm hoping she'll grow out of all of it and do things when she is ready to, like she did with walking (on Father's Day). (I know two other autistic children, one is PDD-NOS, and she's exhibiting similar behaviors to him.) My older child will be 8 on Thanksgiving and there was some question with her on SID or possibly Asperger's, but no pressure so far to have her evaluated. She excels in school, but has emotional and mental problems that I'm trying to help her with. With her, also, I'm hoping she'll " grow out of it " and that things will even out. I'm here hoping to read other posts and see if I recognize my children in other parents' concerns .... I've had a sick feeling in my gut but I'm hoping time will smooth things out. thanks, Kim ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.0.408 / Virus Database: 268.13.4/476 - Release Date: 14/10/06 ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.0.408 / Virus Database: 268.13.4/476 - Release Date: 14/10/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Hi Kim! Welcome to the group. This is a wonderful group of people and we are all caring, full of information, but at times a little opinionated. It is hard not to be when we very frequently feel we have to explain ourselves and our children to the whole world. But even with our strong opinions, we try very hard to be curtious and understanding of everyone else and their views and opinions, kind of a listen to me nicely and I will do the same for you kind of apporuch. So far it works out well. It is hard for me to believe, but I have already been a part of this group for a little over a year. And I have learned more from this support group and come here to vent, pour my heart out, and get prayers more than anywhere else. A lot of us here have been abused, have family who have disowned us, have had family think we are crazy because our kids have autism and they don't know how to deal with it, and so much more. So, we have all been here for one another a lot and would love to be here for you, no matter how little or large your trials may be. As far as your doctor offering speech... Oh my goodness, please say yes. It has taken me years to get my doctor to even sign a piece of paper saying that he refers my kids for speech and I have still had a hard time getting a speech therapist who stays in my area or then me moving twice and having to get a new doctor and a new therapist for them etc. Take whatever you can get! Speech will never hurt your daughter. Wether she is just a late bloomer or has Autism, Aspergers, or whatever, speech can help. Many of the things that you are mentioning to me sound like your little girl may very well be on the spectrum somewhere. I most definately with what you told us would get her in to be evaluated by the Early Intervention program in your area. If you tell us what area you are in there is bound to be someone from your state who could help direct you to the best places, doctors and services. I am in the Portland, Oregon area just to let you know. Once both of your daughters have been evaluated and properly placed or at least that you have an idea of what type of symptoms they seem to fit best, then you have more options. If you are not happy with services, like I have not been many times, you can decline the services and home teach or do your own program or hire your own therapists, but if you don't even now, you are not freeing yourself or your daughters, but rather limiting your whole family to what you now know. I promise I am not trying to be mean or pushy, it is just that I put it off for a year with the same sort of warning signs as you have, and I regret that a little now. We have still made huge progress as a family and we have moved forward a lot on the autism factor, but it would have been " that much " easier had we started earlier. A little background on us. My name is Esther, I have two daughters with Autism ages 5 in a week and 3. I have a baby son age 16months that definately shows signs, but not nearly as much as his sisters and I have had him evaluated, but the evaluators say he is not Autistic, due to his good eye contact and pretend play. I just laugh and smile to myself and say wow what a good job I have done with him. Because I can tell that he is on the spectrum now that I know a lot about it, but I worked with him from day one on his eye contact, and basicly do all the same things with him as with my girls. He rocks and spins in circles on the floor and kills his food before he eats it, he doesn say anything yet at all, he lines up his cars all day long and could care less to ever do anything else. He has no fear nor a shy bone in his body and loves to climb and does well at it. He won't even eat if he has to touch his food himself, but doesn't want me to feed him. So many things like this that are just like my girls were, only some of these things my girls never did, so I know it is not just learned behaviors. But I guess to me, since I am doing my own program and know what to look for and do now, it doesn't matter as much if I push the ESD here to give us services. But for you, where you are very new at this and need a jumpstart and to learn where to get services what services there are and about the different ideas and theories and whatever I would recomend getting you daughter evaluated. However, I must say this was the biggest step coming to this support group you probably could have done for your family. Because you get emotional and friendship support and that makes you stronger, you get things off your chest and get questions answered and here you can get probably more help, ideas and support than anywhere else... at least I have. However getting a diagnosis helps you to have your children qualify for programs, camps, SSI, speech, preschool and all sorts of things if they are in fact on the spectrum that could also greatly assist your family. So, Again I can't stress enough to keep your options open, your mind accepting of whatever happens and what the outcome is, and getting your girls started on the right path of finding out what if anything they have and where to go next and so on. I have been facing some huge challenges with the non-autism things of my family life right now and so honestly have not posted in a while, and it may be a while again before I post, but know that you are welcome here and you are not alone. Come here and talk to us anytime. Sincerely, Esther --- Kim wrote: > Hi, I'm new here. I'm here because I am concerned > about my 19 month > old daughter n. At her 18 month old check-up, > the doctor asked me > if I would consider a speech therapist because she > makes sounds and > gestures, but no intelligible words. I chose to wait > until she turns 2 > in March, as I know some kids are " late bloomers " . > She's already milk > allergic and I have not ruled out a wheat connection > either. She's > very sensitive to things. She started exhibiting > diaper problems in > August while my husband was at a work convention > across the country, > but now it's more frequent (taking off her Pull-Up, > she's pooped and > peed on the floor, she tries tasting her own urine > and feces) .... she > points at what she likes but does not speak. > Sometimes seems not to > hear us but other times shows recognition. Back or > tummy rubbing, > brushing hair, or foot and leg rubbing calm her > down. She imitates > sirens and sounds, loves lights and motion, loves to > dance, loves > remotes and electronic/digital things, > shrieks/ " barks " a lot, laughs > for " no reason " , cries and screams for " no reason " > ..... other times > seems completely normal. Night time has gotten > difficult (from > afternoon to night) as she gets rammy and seems to > " flip out " ... hard > to explain that behavior. When we're out in public, > she rarely > exhibits that behavior, but sometimes she does .... > and then people > just stare at her and me, wondering " what is her > problem? " ... how do > I explain, I don't know. > > I am hesitant to call in specialists because it > could just " be a > phase " ..... I know what the medical go-round is > like (because of her > food sensitivities) and I don't want to put her > through that again > .... and I'm hoping she'll grow out of all of it and > do things when > she is ready to, like she did with walking (on > Father's Day). (I know > two other autistic children, one is PDD-NOS, and > she's exhibiting > similar behaviors to him.) > > My older child will be 8 on Thanksgiving and > there was some > question with her on SID or possibly Asperger's, but > no pressure so > far to have her evaluated. She excels in school, but > has emotional and > mental problems that I'm trying to help her with. > With her, also, I'm > hoping she'll " grow out of it " and that things will > even out. > > I'm here hoping to read other posts and see if I > recognize my children > in other parents' concerns .... I've had a sick > feeling in my gut but > I'm hoping time will smooth things out. > > thanks, > Kim > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Esther, hi - thank you for your suggestions, thoughts, and welcoming :-) I just got back from a trip to the supermarket, n in her stroller (shopping carts don't work too well with her) .... some trips are better than others, this one was in the middle. Luckily there were a lot of elderly people there who were " hard of hearing " anyway, so her babbles, shrieks and cackles weren't noticed much, though her kicking, rocking and head banging (against the back of the stroller) drew some stares ....... Some stuff just started recently, other stuff has been going on for a month or two ..... I don't know if my is part of Asperger's or not ... due to our family experiences with doctors, specialists and labels for everything, I'm leery of dealing with specialists or pigeonholing her into things ... I'm leaving things with alone for now. My husband would never accept it anyway -- but he does feel that something is going on with n, and when he notices something " off " , I pay attention. I'm the worrier of the family, and I'm home with my children, so I notice every little aberration or problem they have, but my husband sees the bigger picture and refuses to get involved in all my " what-ifs " . But he also is concerned about n, and we both do recognize behaviors and quirks in her that we've seen in our friend's autistic son. The reason why we are waiting is because earlier this year, I was convinced that she had multiple food allergies and possibly Celiac because she had recurring diarrhea and bad rashes from certain foods she ate ..... then after about three months, it eased up, and vanished. I almost had an endoscopy done on her to test for various things, but I cancelled it because my family was in an uproar about the test, they blamed me for my " science fair projects " , and her symptoms did clear up after a few months. We chalked it up to a developmental glitch in her digestive system, though her allergy to milk remains. She still drinks soymilk and does fine with it. So, given our experiences before, we have to allow for the possibility that this is another " bump " in her development that may sort itself out given time. The ped had offered a speech therapist, but then said we could wait until the 2 year mark and see how she did then, which is what I chose to do. She turns 20 months on November 2, and March 2 is not that far away. So I feel that whatever is going on, will either sort itself out .... or it will continue to get worse or show no improvement, and then I will need to take steps for her care. In the meantime, I am doing research, research, and more research. Went to the library and got two books on managing life and helping an autistic child - I figure it can't hurt to work with her on socialization, interactive play, communication, and therapeutic techniques for her tantrums, scratching, head/body banging, hair-pulling, etc. I've told my father of my concerns -- no one else. I know this will not be accepted, I know how my husband's family is about these things. And they will blame me for it. But I know my own child. I know she may " snap out of it " .... but I know she may not. Complicating matters is that my husband needs to find another job (he's been with the post office for 16 years) and we need to move - we live in Philadelphia, home of a rotten school district, and is in Catholic school for safety and education reasons, but it's expensive and my father is helping with the tuition. But only to finish second grade (then the money runs out). We'll move to a better school district, but if n turns out to be autistic, then I will need to look into IEPs and therapy and other options ... or I may need to consider homeschooling her. I don't know yet. Too soon to tell yet. In a way, it's reassuring to know that n sounds like she may be " on the spectrum " , mostly because some of her behavior just does not seem " normal " , and I wonder if it's me. Makes me sad also .... I keep thinking, " I'm going to wake up any minute and this will all go away ..... " Yet I never had these issues, questions, or worries with (the wondering about Asperger's was in the last year or so). n started out really well after a difficult pregnancy and birth, she had a good six months or so ...... from about 10 months on .... problems started, but it seemed mostly with her intestines (though she never really played with toys, mostly just liked the tags on toys, didn't seem to understand wrapping paper either at Christmas). Well, I need to get going ... need to pick up from school ..... Thanks again for the welcome, suggestions, and ideas :-) regards, Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Kim, many of us here struggle with our family not accepting our children. My family thought I was nuts when I finally said I thought she has autism. I began noticing a change at 9 mos, she got a hep B shot while scabbed over with chicken pox. She stopped eating, stopped babbling, stopped pulling up, etc. They would say things like, " Let her be a kid, you can tell she's smart. " My reply was always, " I didn't say she was stupid, I said I think she has autism. " My FIL had the nerve to tell me one day I was gonna make her have autism because I would make satan attack her. What ever. What many of us have had to realize is that our child's treatment needs have to come before adults with their own emotional dysfunctions. Grandparents hurt when their grandkids get a dianosis. They grew up in a time that autism or other disabilities were shunned and seen as meaning you somehow failed your family. That's a bunch of nonsense. People are what they are. If they don't have the emotional ability to support you. At any rate, it took six months of testing from the moment I made my first phone call for an appointment. If you wait until March, which is totally your right, you might be looking at several months before you get any treatment established, in which case you will have then lost a year of treatment time. There are some studies that show therapy beginning under 2 can make substantial gains. If you called tomorrow to start, you might not get any treatment established until at least March. One other thing to consider, if it does take around 6 mos to get early intervention treatment, which again, is completely free, then you'll only have that set of therapists for a few months before transitioning to your school system. The longer you can have therapists, the better it is for the child. HTH, Debi Quote Link to comment Share on other sites More sharing options...
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