Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hi Sheila, I several resources in my library of books about autism relative to developing social skills that I've used with students who are on the spectrum as HFA/AS. If you'd like me to share the titles/authors of some of my favorite resources with you, please feel free to send me an e-mail. What you've been through over the years is unimaginable. Thank you for sharing your experiences. I hope the best for you and your daughters... Rhonda > > > > > > Greetings, > > > > > > I'm the mother of twin girls, 18, who have had a recent diagnosis > > of > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now that > > we > > > are finally being seen by our Regional Center, I would appreciate > > > input as to what programs might be beneficial for older > > kids/adults. > > > Do any of you have any experiences for this age group? > > > > > > Let me give you a brief bio of our romp through the medical and > > > educational communities. > > > > > > There were " soft signs of autism " from infancy. The girls didn't > > > look in my face when nursing, didn't explore, and didn't always > > turn > > > towards their name or noise. > > > > > > When the girls were about 3.5 yrs old, we had them evaluated for > > > autism (which turned out to be one of the worst experiences of my > > > life). The doctor's diagnosis was that she didn't know what the > > > problem was but it must be something that I was doing. > > > > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed > > > PDD/NOS. She was the first one to say Prozac was the treatment > (with > > > no further suggestions). This was also my first round of talking > to > > > the school, where the special ed. teacher said that my daughters > > > didn't have autism, it was purely behavioral, and there would be > no > > > place for school assistance. I didn't know enough to realize that > I > > > should start at the top of the educational chain rather than the > > > bottom. I think this was the first time I contacted our regional > > > center, but didn't make it past the receptionist. Since we didn't > > > want to do Prozac, and the school wouldn't help, I was stymied. > > > > > > Age 9 -- diagnosis by development expert of twin symbiosis. > > > > > > Age 15 -- diagnosis of anxiety with underlying autism by > > psychologist > > > (who sent us to a different psychiatrist) and tried hypnosis. > > > > > > Age 16 -- evaluation by psychiatrist with diagnosis of Asperger's > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was when > > > I also really really tried to get some help from the school > > district, > > > but they ended up just suggesting I go to our regional center > (and > > > also gave extra test time). There were no transition or other > > > services available in our district. Of course, at our regional > > > center, I didn't get past the telephone receptionist. > > > > > > Age 17 -- saw a different psychiatrist who seemed to agree with > the > > > last one, but without giving a complete evaluation. His only > > program, > > > also, was for medications. > > > > > > > > > age 18 -- thorough evaluation by a psychologist at California > > > Institute of Technology because the girls signed up to be research > > > subjects for autism research the school is conducting. This was > > > actually the best and most thorough evaluation they've had, and > the > > > diagnosis was autism (not Asperger's or PDD/NOS) > > > > > > age 18 -- meetings with local psychologist and physician (whom I > > > met through TACA), both of whom said they thought a diagnosis of > > > autism and not Asperger's would be correct and that I should be > > seen > > > by our regional center. > > > > > > age 18 -- finally fought my way past the TCRC receptionist (who > once > > > again said that if there were no academic difficulties, then it > > > wasn't a TCRC problem) and was given an intake appointment. Last > > month > > > we had the psychological evaluation and the diagnosis was autism > > > with the suggestion of TCRC assistance (with the evaluator > > wondering > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years after > I > > > first tried to get help for what I was sure from my own research > > > would be considered something on the autism spectrum, I think we > > > might be getting somewhere (if I continue to push and know what to > > > push for!) Do I regret having lost 15 years of help? YES! > > > > > > Your input is appreciated. > > > > > > Sheila > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hello Rhonda, Yes, I'd really appreciate hearing about good resources. Do you think that any of them would be especially appropriate for older kids? Thanks, Sheila In Autism_in_Girls , " asd_sped_teacher " wrote: > > Hi Sheila, > I several resources in my library of books about autism relative to > developing social skills that I've used with students who are on the > spectrum as HFA/AS. If you'd like me to share the titles/authors of > some of my favorite resources with you, please feel free to send me > an e-mail. > > What you've been through over the years is unimaginable. Thank you > for sharing your experiences. I hope the best for you and your > daughters... Rhonda > > > > > > > > > > Greetings, > > > > > > > > I'm the mother of twin girls, 18, who have had a recent > diagnosis > > > of > > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now > that > > > we > > > > are finally being seen by our Regional Center, I would > appreciate > > > > input as to what programs might be beneficial for older > > > kids/adults. > > > > Do any of you have any experiences for this age group? > > > > > > > > Let me give you a brief bio of our romp through the medical and > > > > educational communities. > > > > > > > > There were " soft signs of autism " from infancy. The girls > didn't > > > > look in my face when nursing, didn't explore, and didn't always > > > turn > > > > towards their name or noise. > > > > > > > > When the girls were about 3.5 yrs old, we had them evaluated for > > > > autism (which turned out to be one of the worst experiences of > my > > > > life). The doctor's diagnosis was that she didn't know what the > > > > problem was but it must be something that I was doing. > > > > > > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed > > > > PDD/NOS. She was the first one to say Prozac was the treatment > > (with > > > > no further suggestions). This was also my first round of > talking > > to > > > > the school, where the special ed. teacher said that my daughters > > > > didn't have autism, it was purely behavioral, and there would > be > > no > > > > place for school assistance. I didn't know enough to realize > that > > I > > > > should start at the top of the educational chain rather than the > > > > bottom. I think this was the first time I contacted our > regional > > > > center, but didn't make it past the receptionist. Since we > didn't > > > > want to do Prozac, and the school wouldn't help, I was stymied. > > > > > > > > Age 9 -- diagnosis by development expert of twin symbiosis. > > > > > > > > Age 15 -- diagnosis of anxiety with underlying autism by > > > psychologist > > > > (who sent us to a different psychiatrist) and tried hypnosis. > > > > > > > > Age 16 -- evaluation by psychiatrist with diagnosis of > Asperger's > > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was > when > > > > I also really really tried to get some help from the school > > > district, > > > > but they ended up just suggesting I go to our regional center > > (and > > > > also gave extra test time). There were no transition or other > > > > services available in our district. Of course, at our regional > > > > center, I didn't get past the telephone receptionist. > > > > > > > > Age 17 -- saw a different psychiatrist who seemed to agree with > > the > > > > last one, but without giving a complete evaluation. His only > > > program, > > > > also, was for medications. > > > > > > > > > > > > age 18 -- thorough evaluation by a psychologist at California > > > > Institute of Technology because the girls signed up to be > research > > > > subjects for autism research the school is conducting. This was > > > > actually the best and most thorough evaluation they've had, and > > the > > > > diagnosis was autism (not Asperger's or PDD/NOS) > > > > > > > > age 18 -- meetings with local psychologist and physician (whom I > > > > met through TACA), both of whom said they thought a diagnosis of > > > > autism and not Asperger's would be correct and that I should be > > > seen > > > > by our regional center. > > > > > > > > age 18 -- finally fought my way past the TCRC receptionist (who > > once > > > > again said that if there were no academic difficulties, then it > > > > wasn't a TCRC problem) and was given an intake appointment. > Last > > > month > > > > we had the psychological evaluation and the diagnosis was > autism > > > > with the suggestion of TCRC assistance (with the evaluator > > > wondering > > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years > after > > I > > > > first tried to get help for what I was sure from my own research > > > > would be considered something on the autism spectrum, I think we > > > > might be getting somewhere (if I continue to push and know what > to > > > > push for!) Do I regret having lost 15 years of help? YES! > > > > > > > > Your input is appreciated. > > > > > > > > Sheila > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hello Rhonda, Yes, I'd really appreciate hearing about good resources. Do you think that any of them would be especially appropriate for older kids? Thanks, Sheila In Autism_in_Girls , " asd_sped_teacher " wrote: > > Hi Sheila, > I several resources in my library of books about autism relative to > developing social skills that I've used with students who are on the > spectrum as HFA/AS. If you'd like me to share the titles/authors of > some of my favorite resources with you, please feel free to send me > an e-mail. > > What you've been through over the years is unimaginable. Thank you > for sharing your experiences. I hope the best for you and your > daughters... Rhonda > > > > > > > > > > Greetings, > > > > > > > > I'm the mother of twin girls, 18, who have had a recent > diagnosis > > > of > > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now > that > > > we > > > > are finally being seen by our Regional Center, I would > appreciate > > > > input as to what programs might be beneficial for older > > > kids/adults. > > > > Do any of you have any experiences for this age group? > > > > > > > > Let me give you a brief bio of our romp through the medical and > > > > educational communities. > > > > > > > > There were " soft signs of autism " from infancy. The girls > didn't > > > > look in my face when nursing, didn't explore, and didn't always > > > turn > > > > towards their name or noise. > > > > > > > > When the girls were about 3.5 yrs old, we had them evaluated for > > > > autism (which turned out to be one of the worst experiences of > my > > > > life). The doctor's diagnosis was that she didn't know what the > > > > problem was but it must be something that I was doing. > > > > > > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed > > > > PDD/NOS. She was the first one to say Prozac was the treatment > > (with > > > > no further suggestions). This was also my first round of > talking > > to > > > > the school, where the special ed. teacher said that my daughters > > > > didn't have autism, it was purely behavioral, and there would > be > > no > > > > place for school assistance. I didn't know enough to realize > that > > I > > > > should start at the top of the educational chain rather than the > > > > bottom. I think this was the first time I contacted our > regional > > > > center, but didn't make it past the receptionist. Since we > didn't > > > > want to do Prozac, and the school wouldn't help, I was stymied. > > > > > > > > Age 9 -- diagnosis by development expert of twin symbiosis. > > > > > > > > Age 15 -- diagnosis of anxiety with underlying autism by > > > psychologist > > > > (who sent us to a different psychiatrist) and tried hypnosis. > > > > > > > > Age 16 -- evaluation by psychiatrist with diagnosis of > Asperger's > > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was > when > > > > I also really really tried to get some help from the school > > > district, > > > > but they ended up just suggesting I go to our regional center > > (and > > > > also gave extra test time). There were no transition or other > > > > services available in our district. Of course, at our regional > > > > center, I didn't get past the telephone receptionist. > > > > > > > > Age 17 -- saw a different psychiatrist who seemed to agree with > > the > > > > last one, but without giving a complete evaluation. His only > > > program, > > > > also, was for medications. > > > > > > > > > > > > age 18 -- thorough evaluation by a psychologist at California > > > > Institute of Technology because the girls signed up to be > research > > > > subjects for autism research the school is conducting. This was > > > > actually the best and most thorough evaluation they've had, and > > the > > > > diagnosis was autism (not Asperger's or PDD/NOS) > > > > > > > > age 18 -- meetings with local psychologist and physician (whom I > > > > met through TACA), both of whom said they thought a diagnosis of > > > > autism and not Asperger's would be correct and that I should be > > > seen > > > > by our regional center. > > > > > > > > age 18 -- finally fought my way past the TCRC receptionist (who > > once > > > > again said that if there were no academic difficulties, then it > > > > wasn't a TCRC problem) and was given an intake appointment. > Last > > > month > > > > we had the psychological evaluation and the diagnosis was > autism > > > > with the suggestion of TCRC assistance (with the evaluator > > > wondering > > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years > after > > I > > > > first tried to get help for what I was sure from my own research > > > > would be considered something on the autism spectrum, I think we > > > > might be getting somewhere (if I continue to push and know what > to > > > > push for!) Do I regret having lost 15 years of help? YES! > > > > > > > > Your input is appreciated. > > > > > > > > Sheila > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hi Sheila, I think Koegel PRT would definitely benefit older kids. We pretty much incorporated it in to everyday life around here. Sorry you had such a frustrating first experience the first time with UCSB. If you get a good SC, like the past 3 I've had, you don't necessarily need to be prepared to fight. My SC practically begs me to take services and money from them. Last year they had extra year-end funds at the close of the fiscal year and I got $1000 for a ton of sensory equipment for my house. I've never been given a hard time about anything I've wanted. Of course, my daughter qualifies for everything. There has never been any question about her diagnosis. If you run down the DSM IV for autistic disorder, she exhibits every single one of the characteristics and behaviors. Every one. She is the poster child for autism. Who are these " experts " who claimed drugging your kids is the only treatment for autism? I can't tell you how angry this makes me. It just turns my stomach. No one even recommended ANY typed of behavioral therapy? Unreal. But you're right....better late than never, and I truly wish you the very best in this. > Hi , > I've called UCSB and the receptionist said that they might be able to > help us after we've been formally accepted by TCRC. TCRC said that > they have now put us on UCSB's waiting list. I'm hoping that the > Koegel program will be able to benefit older kids. When I called the > Koegel center when I first suspected autism years ago, they didn't > even return my calls and I supposed it was because we didn't have a > formal diagnosis of autism at the time so I became very frustrated > with UCSB. > > As for a SC, we haven't been assigned anyone, yet. Others have told > me that, basically, I'd better have a good idea of what we need and > want and then be prepared to fight for it. Sooooo, I need to find > out if there are any others who have ever entered into the system at > this late date and what they did that was beneficial (and what wasn't > for them and why). > > It wasn't until a couple of years ago that I discovered our local on- > line autism group and found out that all the experts I had consulted > were wrong about Prozac and medications being the ONLY possible > treatment (since the Koegel institute was only for confirmed autism > and at the time we had PDD/NOS diagnosis and they weren't interested > in us). At any rate, better late than never.... > > Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hi Sheila, I think Koegel PRT would definitely benefit older kids. We pretty much incorporated it in to everyday life around here. Sorry you had such a frustrating first experience the first time with UCSB. If you get a good SC, like the past 3 I've had, you don't necessarily need to be prepared to fight. My SC practically begs me to take services and money from them. Last year they had extra year-end funds at the close of the fiscal year and I got $1000 for a ton of sensory equipment for my house. I've never been given a hard time about anything I've wanted. Of course, my daughter qualifies for everything. There has never been any question about her diagnosis. If you run down the DSM IV for autistic disorder, she exhibits every single one of the characteristics and behaviors. Every one. She is the poster child for autism. Who are these " experts " who claimed drugging your kids is the only treatment for autism? I can't tell you how angry this makes me. It just turns my stomach. No one even recommended ANY typed of behavioral therapy? Unreal. But you're right....better late than never, and I truly wish you the very best in this. > Hi , > I've called UCSB and the receptionist said that they might be able to > help us after we've been formally accepted by TCRC. TCRC said that > they have now put us on UCSB's waiting list. I'm hoping that the > Koegel program will be able to benefit older kids. When I called the > Koegel center when I first suspected autism years ago, they didn't > even return my calls and I supposed it was because we didn't have a > formal diagnosis of autism at the time so I became very frustrated > with UCSB. > > As for a SC, we haven't been assigned anyone, yet. Others have told > me that, basically, I'd better have a good idea of what we need and > want and then be prepared to fight for it. Sooooo, I need to find > out if there are any others who have ever entered into the system at > this late date and what they did that was beneficial (and what wasn't > for them and why). > > It wasn't until a couple of years ago that I discovered our local on- > line autism group and found out that all the experts I had consulted > were wrong about Prozac and medications being the ONLY possible > treatment (since the Koegel institute was only for confirmed autism > and at the time we had PDD/NOS diagnosis and they weren't interested > in us). At any rate, better late than never.... > > Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Hi Sheila, Unfortunately, I don't know your children, but I think the first two books would be appropriate for older kids. I believe our high school staff uses the first two books listed. (I'll contact a parent of students that I worked with who are now in High School and about ready to graduate, to get her recommendations for resources and get back to you.) We use the books by -Winner a lot in our daily work. Since I don't know your girls, I am guessing, but I think they'd be appropriate to use with older kids. You might be able to phone the toll-free number listed on the website to see what materials would be most appropriate given your daughters' specific situation. Does your state/region autism network have a lending library of resources for parents and educators? Maybe you could borrow the books to see if they are appropriate to your situation before you purchase them... These books can be found at: www.bn.com or www.amazon.com: Navigating the Social World : A Curriculum for Educating Indiviuals with Asperger's Syndrome and High Functioning Autism by Jeanette McAfee Social Skills Training by Jed E. Baker (Also, Jed Baker just came out with a new book, which I just loaned to a parent, called: No More Meltdowns.) These books are available at www.socialthinking.com: Sticker Strategies to Encourage Social Thinking and Organization by Winner Worksheets! for Teaching Social Thinking and Related Skills by Winner Thinking about You Thinking about Me by Winner Rhonda > > > > > > > > > > Greetings, > > > > > > > > > > I'm the mother of twin girls, 18, who have had a recent > > diagnosis > > > > of > > > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now > > that > > > > we > > > > > are finally being seen by our Regional Center, I would > > appreciate > > > > > input as to what programs might be beneficial for older > > > > kids/adults. > > > > > Do any of you have any experiences for this age group? > > > > > > > > > > Let me give you a brief bio of our romp through the medical > and > > > > > educational communities. > > > > > > > > > > There were " soft signs of autism " from infancy. The girls > > didn't > > > > > look in my face when nursing, didn't explore, and didn't > always > > > > turn > > > > > towards their name or noise. > > > > > > > > > > When the girls were about 3.5 yrs old, we had them evaluated > for > > > > > autism (which turned out to be one of the worst experiences > of > > my > > > > > life). The doctor's diagnosis was that she didn't know what > the > > > > > problem was but it must be something that I was doing. > > > > > > > > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed > > > > > PDD/NOS. She was the first one to say Prozac was the > treatment > > > (with > > > > > no further suggestions). This was also my first round of > > talking > > > to > > > > > the school, where the special ed. teacher said that my > daughters > > > > > didn't have autism, it was purely behavioral, and there would > > be > > > no > > > > > place for school assistance. I didn't know enough to realize > > that > > > I > > > > > should start at the top of the educational chain rather than > the > > > > > bottom. I think this was the first time I contacted our > > regional > > > > > center, but didn't make it past the receptionist. Since we > > didn't > > > > > want to do Prozac, and the school wouldn't help, I was > stymied. > > > > > > > > > > Age 9 -- diagnosis by development expert of twin symbiosis. > > > > > > > > > > Age 15 -- diagnosis of anxiety with underlying autism by > > > > psychologist > > > > > (who sent us to a different psychiatrist) and tried hypnosis. > > > > > > > > > > Age 16 -- evaluation by psychiatrist with diagnosis of > > Asperger's > > > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was > > when > > > > > I also really really tried to get some help from the school > > > > district, > > > > > but they ended up just suggesting I go to our regional center > > > (and > > > > > also gave extra test time). There were no transition or other > > > > > services available in our district. Of course, at our > regional > > > > > center, I didn't get past the telephone receptionist. > > > > > > > > > > Age 17 -- saw a different psychiatrist who seemed to agree > with > > > the > > > > > last one, but without giving a complete evaluation. His only > > > > program, > > > > > also, was for medications. > > > > > > > > > > > > > > > age 18 -- thorough evaluation by a psychologist at California > > > > > Institute of Technology because the girls signed up to be > > research > > > > > subjects for autism research the school is conducting. This > was > > > > > actually the best and most thorough evaluation they've had, > and > > > the > > > > > diagnosis was autism (not Asperger's or PDD/NOS) > > > > > > > > > > age 18 -- meetings with local psychologist and physician > (whom I > > > > > met through TACA), both of whom said they thought a diagnosis > of > > > > > autism and not Asperger's would be correct and that I should > be > > > > seen > > > > > by our regional center. > > > > > > > > > > age 18 -- finally fought my way past the TCRC receptionist > (who > > > once > > > > > again said that if there were no academic difficulties, then > it > > > > > wasn't a TCRC problem) and was given an intake appointment. > > Last > > > > month > > > > > we had the psychological evaluation and the diagnosis was > > autism > > > > > with the suggestion of TCRC assistance (with the evaluator > > > > wondering > > > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years > > after > > > I > > > > > first tried to get help for what I was sure from my own > research > > > > > would be considered something on the autism spectrum, I think > we > > > > > might be getting somewhere (if I continue to push and know > what > > to > > > > > push for!) Do I regret having lost 15 years of help? YES! > > > > > > > > > > Your input is appreciated. > > > > > > > > > > Sheila > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Hi Sheila, Unfortunately, I don't know your children, but I think the first two books would be appropriate for older kids. I believe our high school staff uses the first two books listed. (I'll contact a parent of students that I worked with who are now in High School and about ready to graduate, to get her recommendations for resources and get back to you.) We use the books by -Winner a lot in our daily work. Since I don't know your girls, I am guessing, but I think they'd be appropriate to use with older kids. You might be able to phone the toll-free number listed on the website to see what materials would be most appropriate given your daughters' specific situation. Does your state/region autism network have a lending library of resources for parents and educators? Maybe you could borrow the books to see if they are appropriate to your situation before you purchase them... These books can be found at: www.bn.com or www.amazon.com: Navigating the Social World : A Curriculum for Educating Indiviuals with Asperger's Syndrome and High Functioning Autism by Jeanette McAfee Social Skills Training by Jed E. Baker (Also, Jed Baker just came out with a new book, which I just loaned to a parent, called: No More Meltdowns.) These books are available at www.socialthinking.com: Sticker Strategies to Encourage Social Thinking and Organization by Winner Worksheets! for Teaching Social Thinking and Related Skills by Winner Thinking about You Thinking about Me by Winner Rhonda > > > > > > > > > > Greetings, > > > > > > > > > > I'm the mother of twin girls, 18, who have had a recent > > diagnosis > > > > of > > > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now > > that > > > > we > > > > > are finally being seen by our Regional Center, I would > > appreciate > > > > > input as to what programs might be beneficial for older > > > > kids/adults. > > > > > Do any of you have any experiences for this age group? > > > > > > > > > > Let me give you a brief bio of our romp through the medical > and > > > > > educational communities. > > > > > > > > > > There were " soft signs of autism " from infancy. The girls > > didn't > > > > > look in my face when nursing, didn't explore, and didn't > always > > > > turn > > > > > towards their name or noise. > > > > > > > > > > When the girls were about 3.5 yrs old, we had them evaluated > for > > > > > autism (which turned out to be one of the worst experiences > of > > my > > > > > life). The doctor's diagnosis was that she didn't know what > the > > > > > problem was but it must be something that I was doing. > > > > > > > > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed > > > > > PDD/NOS. She was the first one to say Prozac was the > treatment > > > (with > > > > > no further suggestions). This was also my first round of > > talking > > > to > > > > > the school, where the special ed. teacher said that my > daughters > > > > > didn't have autism, it was purely behavioral, and there would > > be > > > no > > > > > place for school assistance. I didn't know enough to realize > > that > > > I > > > > > should start at the top of the educational chain rather than > the > > > > > bottom. I think this was the first time I contacted our > > regional > > > > > center, but didn't make it past the receptionist. Since we > > didn't > > > > > want to do Prozac, and the school wouldn't help, I was > stymied. > > > > > > > > > > Age 9 -- diagnosis by development expert of twin symbiosis. > > > > > > > > > > Age 15 -- diagnosis of anxiety with underlying autism by > > > > psychologist > > > > > (who sent us to a different psychiatrist) and tried hypnosis. > > > > > > > > > > Age 16 -- evaluation by psychiatrist with diagnosis of > > Asperger's > > > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was > > when > > > > > I also really really tried to get some help from the school > > > > district, > > > > > but they ended up just suggesting I go to our regional center > > > (and > > > > > also gave extra test time). There were no transition or other > > > > > services available in our district. Of course, at our > regional > > > > > center, I didn't get past the telephone receptionist. > > > > > > > > > > Age 17 -- saw a different psychiatrist who seemed to agree > with > > > the > > > > > last one, but without giving a complete evaluation. His only > > > > program, > > > > > also, was for medications. > > > > > > > > > > > > > > > age 18 -- thorough evaluation by a psychologist at California > > > > > Institute of Technology because the girls signed up to be > > research > > > > > subjects for autism research the school is conducting. This > was > > > > > actually the best and most thorough evaluation they've had, > and > > > the > > > > > diagnosis was autism (not Asperger's or PDD/NOS) > > > > > > > > > > age 18 -- meetings with local psychologist and physician > (whom I > > > > > met through TACA), both of whom said they thought a diagnosis > of > > > > > autism and not Asperger's would be correct and that I should > be > > > > seen > > > > > by our regional center. > > > > > > > > > > age 18 -- finally fought my way past the TCRC receptionist > (who > > > once > > > > > again said that if there were no academic difficulties, then > it > > > > > wasn't a TCRC problem) and was given an intake appointment. > > Last > > > > month > > > > > we had the psychological evaluation and the diagnosis was > > autism > > > > > with the suggestion of TCRC assistance (with the evaluator > > > > wondering > > > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years > > after > > > I > > > > > first tried to get help for what I was sure from my own > research > > > > > would be considered something on the autism spectrum, I think > we > > > > > might be getting somewhere (if I continue to push and know > what > > to > > > > > push for!) Do I regret having lost 15 years of help? YES! > > > > > > > > > > Your input is appreciated. > > > > > > > > > > Sheila > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Thanks, Rhonda, I'll have to see what our local TACA library might have....a couple of the titles sound very familiar! Thanks, Sheila > > > > > > > > > > > > Greetings, > > > > > > > > > > > > I'm the mother of twin girls, 18, who have had a recent > > > diagnosis > > > > > of > > > > > > autism (and prior diagnoses of Asperger's and PDD/NOS). > Now > > > that > > > > > we > > > > > > are finally being seen by our Regional Center, I would > > > appreciate > > > > > > input as to what programs might be beneficial for older > > > > > kids/adults. > > > > > > Do any of you have any experiences for this age group? > > > > > > > > > > > > Let me give you a brief bio of our romp through the medical > > and > > > > > > educational communities. > > > > > > > > > > > > There were " soft signs of autism " from infancy. The girls > > > didn't > > > > > > look in my face when nursing, didn't explore, and didn't > > always > > > > > turn > > > > > > towards their name or noise. > > > > > > > > > > > > When the girls were about 3.5 yrs old, we had them > evaluated > > for > > > > > > autism (which turned out to be one of the worst experiences > > of > > > my > > > > > > life). The doctor's diagnosis was that she didn't know what > > the > > > > > > problem was but it must be something that I was doing. > > > > > > > > > > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed > > > > > > PDD/NOS. She was the first one to say Prozac was the > > treatment > > > > (with > > > > > > no further suggestions). This was also my first round of > > > talking > > > > to > > > > > > the school, where the special ed. teacher said that my > > daughters > > > > > > didn't have autism, it was purely behavioral, and there > would > > > be > > > > no > > > > > > place for school assistance. I didn't know enough to > realize > > > that > > > > I > > > > > > should start at the top of the educational chain rather > than > > the > > > > > > bottom. I think this was the first time I contacted our > > > regional > > > > > > center, but didn't make it past the receptionist. Since we > > > didn't > > > > > > want to do Prozac, and the school wouldn't help, I was > > stymied. > > > > > > > > > > > > Age 9 -- diagnosis by development expert of twin symbiosis. > > > > > > > > > > > > Age 15 -- diagnosis of anxiety with underlying autism by > > > > > psychologist > > > > > > (who sent us to a different psychiatrist) and tried > hypnosis. > > > > > > > > > > > > Age 16 -- evaluation by psychiatrist with diagnosis of > > > Asperger's > > > > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This > was > > > when > > > > > > I also really really tried to get some help from the school > > > > > district, > > > > > > but they ended up just suggesting I go to our regional > center > > > > (and > > > > > > also gave extra test time). There were no transition or > other > > > > > > services available in our district. Of course, at our > > regional > > > > > > center, I didn't get past the telephone receptionist. > > > > > > > > > > > > Age 17 -- saw a different psychiatrist who seemed to agree > > with > > > > the > > > > > > last one, but without giving a complete evaluation. His > only > > > > > program, > > > > > > also, was for medications. > > > > > > > > > > > > > > > > > > age 18 -- thorough evaluation by a psychologist at > California > > > > > > Institute of Technology because the girls signed up to be > > > research > > > > > > subjects for autism research the school is conducting. This > > was > > > > > > actually the best and most thorough evaluation they've had, > > and > > > > the > > > > > > diagnosis was autism (not Asperger's or PDD/NOS) > > > > > > > > > > > > age 18 -- meetings with local psychologist and physician > > (whom I > > > > > > met through TACA), both of whom said they thought a > diagnosis > > of > > > > > > autism and not Asperger's would be correct and that I > should > > be > > > > > seen > > > > > > by our regional center. > > > > > > > > > > > > age 18 -- finally fought my way past the TCRC receptionist > > (who > > > > once > > > > > > again said that if there were no academic difficulties, > then > > it > > > > > > wasn't a TCRC problem) and was given an intake appointment. > > > Last > > > > > month > > > > > > we had the psychological evaluation and the diagnosis was > > > autism > > > > > > with the suggestion of TCRC assistance (with the evaluator > > > > > wondering > > > > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years > > > after > > > > I > > > > > > first tried to get help for what I was sure from my own > > research > > > > > > would be considered something on the autism spectrum, I > think > > we > > > > > > might be getting somewhere (if I continue to push and know > > what > > > to > > > > > > push for!) Do I regret having lost 15 years of help? YES! > > > > > > > > > > > > Your input is appreciated. > > > > > > > > > > > > Sheila > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Hello Sondra, Your comments made me think. My daughters don't like being with others with disabilities. I think it makes them feel bad about themselves and also calls attention to them in a way they don't like. Sheila > > santa barba is of far away from I to think because I to live in Ohio > and not sure where the other place is to be. I to be of curious as my > own daughter of Aimee is of similar to you daughter she loves of dance > more ballet and hip hop and modern and resists any sort of program set > for those with a variety of disability. she likes of the programs but > does not want to be centered out as a group she does not like that. but > she is of under a waiver in our state and does get of supports from > MRDD and gets of medicaid. > > as for me that sort of thing does not cause of me an issue as much > because i to like to be part of a group doing a joint activity or > having a mutual purpose, but do not like to feel forced to have to > interact in a stuctured social way where I to feel centered out to > share with the purpose of so called forced friendships. I to like to > have of my own space and time to feel okay and find one I to connect to > and then can find a way to communicate at my own pace with that person. > if it feels forced it causes of me to shut down. > > sondra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Hello Sondra, Your comments made me think. My daughters don't like being with others with disabilities. I think it makes them feel bad about themselves and also calls attention to them in a way they don't like. Sheila > > santa barba is of far away from I to think because I to live in Ohio > and not sure where the other place is to be. I to be of curious as my > own daughter of Aimee is of similar to you daughter she loves of dance > more ballet and hip hop and modern and resists any sort of program set > for those with a variety of disability. she likes of the programs but > does not want to be centered out as a group she does not like that. but > she is of under a waiver in our state and does get of supports from > MRDD and gets of medicaid. > > as for me that sort of thing does not cause of me an issue as much > because i to like to be part of a group doing a joint activity or > having a mutual purpose, but do not like to feel forced to have to > interact in a stuctured social way where I to feel centered out to > share with the purpose of so called forced friendships. I to like to > have of my own space and time to feel okay and find one I to connect to > and then can find a way to communicate at my own pace with that person. > if it feels forced it causes of me to shut down. > > sondra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Hi there! I am new to this list! My name is Zdravko. I come from Bulgaria. I hope to learn many new and useful things about Candidasis here. I am pretty sure I have it, because the spit test turns out positive. Best regards! -- Zdravko Monov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2010 Report Share Posted March 27, 2010 Hi Amy Emm, Welcome to the group. The people here are fantastic and very helpful. It's a great group to belong to. Delores > > Hi Everyone! > My name is Amy Emm, and I live in Syracuse. I'm new to the board, and I just wanted to pop in and say hello! I'm looking forward to meeting all of you and discussing everything soap! Thanks for letting me join! > > Amy > Quote Link to comment Share on other sites More sharing options...
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