Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Has your daughter had ANY therapy??? Any early intervention of any kind? Preschool? Are you in the US? I'm just wondering, because it seems like for a mom who claims she will do anything and everything to recover her daughter, you would have at least started with the stuff that is actually proven (and backed up with data) to help. Are services not available in your area? Amnesty > > I don't know what " biomedicine " is. > > > > Amy, what you need to realize is that there are LOTS of people who > > have done everything McCarthy has and then some; their kids > are > > not responders. It's very painful for those families to continually > > hear how they could " cure " their kid if they just did biomedical. > It's > > just not true in most cases. > > > > I'm a big believer in biomedical treatment for symptoms of autism. > > Thankfully, Allie has responded physically to a lot of stuff we've > > tried. In fact, we've done nearly everything McCarthy did > years > > before she did it. Allie still has autism. I think it's great that > > 's son is doing so well, but that just isn't the case for > > everyone and some sensitivity is needed, IMO. I have a dear friend > who > > used to drive from TN to Bradstreet's clinic once/mo to get her > > daughter IVs & other treatments. They helped some but not > completely. > > She did/does a lot of other stuff. She still has horrible behavior > > problems. I cannot tell you how painful it is when she's told she > > hasn't done enough for her daughter. > > > > I would suggest you take time to get to know the parents on this > board > > before assuming the people have not tried anything to help their > > kids/selves. Parents & those with autism need support and > > encouragement, maybe it's just me, but I get the increasing feeling > of > > an offensive tone in your postings. If it's just me, I apologize. > > > > Debi > > > > > > > > > > > > > > Chef Amy > > Reel Thyme Cooking, LLC > > > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Well, here's what I think has helped Allie Kat: speech with an ABA emphasis, 20 mo old to 4 yrs old, but not enough hrs, 4.5 from 2-3, then ABA-based preschool for 2 yrs. I tried ABA myself, I felt in our situation Allie needed me to be Mommy more than therapist, though I did try to naturalize some ABA approaches. OT, sensory integration therapy 2 hrs wk from 23 mos to 3 yrs, then sensory diet at the preschool for 2 more years. She had SEVERE vestibular, proprioceptive, and tactile issues. It helped TREMENDOUSLY. GFCF diet, along with no salicylates. 2yrs 4 mos when we started, 4 1/2 yrs when we stopped. She started talking 4-5 days after dairy was removed within 2 mos over 100+ word vocab, mostly nouns for labeling. We were 100% compliant, except at the time we were unaware that Mcs fries did have gluten, despite their assurances no gluten. After she went off gfcf she was given enzymes for another year. various vits/mins. We started out with super nu-thera at 24 mos old. Then on to a plethora of others. Paxil. 37 mos to today, with 3 attempts to wean off, never been successful for over 6 mos. It has given her a life. 2 mos after going gfcf she began a regression, within 6 mos, a year into therapies and biomed, she was worse in some ways than when we started. I have theorized she went into a tryptophan crisis, however 5-htp, melatonin, and inositol did not help. Within 48 hrs she had turned around with progressions out the wazzoo. Among them, OCD significantly decreased, anxiety significantly decreased, inappropriate self-stimulation nearly extinguished, she became more verbal, and stopped having extreme sound sensitivity. Low-dose natrexone & MB-12 shots. 5 or 6 years old. Seem to work synergistically. She stopped getting sick at onset and have more normal immune system. Seems like I saw more but cannot remember enough to document. chelation. Did some Cutler protocol, saw little improvements with each round. Now IV chelation using Bradstreet/Haley protocol vit C/NAC/Glutathione/EDTA/DMPS. See new gains with each IV, cognitively, verbally, and socially. More importantly, her body is now growing and she's not sick all the time. She ASKS for her IV 8 days after each prior. She tells us they make her feel better. Lab tests confirm she is excreting moderate levels of lead, huge levels of aluminum, and some others. Recently, vit A/D3 from fish liver oil & soy seems to be helping her. We've temporarily stopped to see if stomach distention is related to it, can't tell. She got VERY happy and social, max dose was 30,000iu vit A/1200iu vit D3. Also getting 25mg zinc & 400 folinic acid/daily. Hoping to get her on probiotics soon. Tried diflucan, saw little/no results. Emotionally: encouraging her that she is valued, worthy, and wonderful. Realizing normalcy is relative. Realizing we all have quirks and she should not be put down for having her own. Enjoying her strengths and realizing her weaknesses are no different from anyone else's, and that we are to protect her weaknesses while advocating her strengths. Telling her autism is something to have pride in, and sharing with her other famous people who had/have autism. Having her meet other people who have autism, encouraging her that she can do anything. Trying to downplay autism and up-play Allie. Things I still want to try: Stem cell therapy: I want her to be given her own stem cells that we stored at birth in a simple IV. HBOT: I would like to do at least 100 dives, more if progress is seen. Continue to tweak & encourage nutrition. Continue what's working. Continue to allow her more & more say-so in her future and her body, just like I would any other child as they grow & mature. Continue to find/create new social opportunities and better not only her future, but the future of all affected by autism, both now and in the future. Shoot for the stars Debi - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Well, here's what I think has helped Allie Kat: speech with an ABA emphasis, 20 mo old to 4 yrs old, but not enough hrs, 4.5 from 2-3, then ABA-based preschool for 2 yrs. I tried ABA myself, I felt in our situation Allie needed me to be Mommy more than therapist, though I did try to naturalize some ABA approaches. OT, sensory integration therapy 2 hrs wk from 23 mos to 3 yrs, then sensory diet at the preschool for 2 more years. She had SEVERE vestibular, proprioceptive, and tactile issues. It helped TREMENDOUSLY. GFCF diet, along with no salicylates. 2yrs 4 mos when we started, 4 1/2 yrs when we stopped. She started talking 4-5 days after dairy was removed within 2 mos over 100+ word vocab, mostly nouns for labeling. We were 100% compliant, except at the time we were unaware that Mcs fries did have gluten, despite their assurances no gluten. After she went off gfcf she was given enzymes for another year. various vits/mins. We started out with super nu-thera at 24 mos old. Then on to a plethora of others. Paxil. 37 mos to today, with 3 attempts to wean off, never been successful for over 6 mos. It has given her a life. 2 mos after going gfcf she began a regression, within 6 mos, a year into therapies and biomed, she was worse in some ways than when we started. I have theorized she went into a tryptophan crisis, however 5-htp, melatonin, and inositol did not help. Within 48 hrs she had turned around with progressions out the wazzoo. Among them, OCD significantly decreased, anxiety significantly decreased, inappropriate self-stimulation nearly extinguished, she became more verbal, and stopped having extreme sound sensitivity. Low-dose natrexone & MB-12 shots. 5 or 6 years old. Seem to work synergistically. She stopped getting sick at onset and have more normal immune system. Seems like I saw more but cannot remember enough to document. chelation. Did some Cutler protocol, saw little improvements with each round. Now IV chelation using Bradstreet/Haley protocol vit C/NAC/Glutathione/EDTA/DMPS. See new gains with each IV, cognitively, verbally, and socially. More importantly, her body is now growing and she's not sick all the time. She ASKS for her IV 8 days after each prior. She tells us they make her feel better. Lab tests confirm she is excreting moderate levels of lead, huge levels of aluminum, and some others. Recently, vit A/D3 from fish liver oil & soy seems to be helping her. We've temporarily stopped to see if stomach distention is related to it, can't tell. She got VERY happy and social, max dose was 30,000iu vit A/1200iu vit D3. Also getting 25mg zinc & 400 folinic acid/daily. Hoping to get her on probiotics soon. Tried diflucan, saw little/no results. Emotionally: encouraging her that she is valued, worthy, and wonderful. Realizing normalcy is relative. Realizing we all have quirks and she should not be put down for having her own. Enjoying her strengths and realizing her weaknesses are no different from anyone else's, and that we are to protect her weaknesses while advocating her strengths. Telling her autism is something to have pride in, and sharing with her other famous people who had/have autism. Having her meet other people who have autism, encouraging her that she can do anything. Trying to downplay autism and up-play Allie. Things I still want to try: Stem cell therapy: I want her to be given her own stem cells that we stored at birth in a simple IV. HBOT: I would like to do at least 100 dives, more if progress is seen. Continue to tweak & encourage nutrition. Continue what's working. Continue to allow her more & more say-so in her future and her body, just like I would any other child as they grow & mature. Continue to find/create new social opportunities and better not only her future, but the future of all affected by autism, both now and in the future. Shoot for the stars Debi - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Yes, McCarthy also started out with an ABA program, along with speech. I don't recall what she said about OT, but I have met & spoken with both & the speech path. That said, there are few/no ABA programs locally, unless we create them. Allie has done far better with others than just me. I admire those whose kids seem to do so well with homeschooling. My kids seem to want me as mommy, not as therapist. I could tell it was affecting Allie emotionally, it was like she didn't have a mommy to comfort her & just be mom. Maybe I did a poor job of separating the roles, I dunno, but when I stopped trying to be therapist she became much happier. My oldest has told me she wants me to be Mom and let the teachers be the teachers. I guess that says something about me or them, or all of us. Debi > > Has your daughter had ANY therapy??? Any early intervention of any > kind? Preschool? Are you in the US? > I'm just wondering, because it seems like for a mom who claims she > will do anything and everything to recover her daughter, you would > have at least started with the stuff that is actually proven (and > backed up with data) to help. Are services not available in your area? > Amnesty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Yes, McCarthy also started out with an ABA program, along with speech. I don't recall what she said about OT, but I have met & spoken with both & the speech path. That said, there are few/no ABA programs locally, unless we create them. Allie has done far better with others than just me. I admire those whose kids seem to do so well with homeschooling. My kids seem to want me as mommy, not as therapist. I could tell it was affecting Allie emotionally, it was like she didn't have a mommy to comfort her & just be mom. Maybe I did a poor job of separating the roles, I dunno, but when I stopped trying to be therapist she became much happier. My oldest has told me she wants me to be Mom and let the teachers be the teachers. I guess that says something about me or them, or all of us. Debi > > Has your daughter had ANY therapy??? Any early intervention of any > kind? Preschool? Are you in the US? > I'm just wondering, because it seems like for a mom who claims she > will do anything and everything to recover her daughter, you would > have at least started with the stuff that is actually proven (and > backed up with data) to help. Are services not available in your area? > Amnesty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 > > Allie has done far better with others than just me. I admire those > whose kids seem to do so well with homeschooling. My kids seem to want > me as mommy, not as therapist. I could tell it was affecting Allie > emotionally, it was like she didn't have a mommy to comfort her & just > be mom. Maybe I did a poor job of separating the roles, I dunno, but > when I stopped trying to be therapist she became much happier. My > oldest has told me she wants me to be Mom and let the teachers be the > teachers. I guess that says something about me or them, or all of us. > > Debi > That's why parent training is my favorite part of my job. It's a tricky balance, being mom (or dad) first, but also helping with therapy programs. IMO, there is no point in therapists doing anything unless the child is going to do the same things for her parents. That said, moms SHOULDN'T be doing therapy all the time...it has to be things that fit naturally into what they already do, and not negatively impact feeling like a mom! Honestly though, I didn't " get " that until I was a mom myself...and I know it's something that a lot of my coworkers have difficulty with, since most of them don't have kids. Amnesty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 > > Allie has done far better with others than just me. I admire those > whose kids seem to do so well with homeschooling. My kids seem to want > me as mommy, not as therapist. I could tell it was affecting Allie > emotionally, it was like she didn't have a mommy to comfort her & just > be mom. Maybe I did a poor job of separating the roles, I dunno, but > when I stopped trying to be therapist she became much happier. My > oldest has told me she wants me to be Mom and let the teachers be the > teachers. I guess that says something about me or them, or all of us. > > Debi > That's why parent training is my favorite part of my job. It's a tricky balance, being mom (or dad) first, but also helping with therapy programs. IMO, there is no point in therapists doing anything unless the child is going to do the same things for her parents. That said, moms SHOULDN'T be doing therapy all the time...it has to be things that fit naturally into what they already do, and not negatively impact feeling like a mom! Honestly though, I didn't " get " that until I was a mom myself...and I know it's something that a lot of my coworkers have difficulty with, since most of them don't have kids. Amnesty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 McCarthy can't decide if her kid is autistic or not, has never heard of autistic adults (though she has met at least three, I know them and they have pictures), and took her son's meds but can't name them. Not much a scientist, is she? Kassiane --- Amy Wittman wrote: > Missing the point....I am strictly speaking to those > who have not, or will not ever do anything to help > their child get better. I am not talking to anyone > that has done " whatever " to get results. Alot of > people get on autism groups, state how bad their > child acts, and will never do anything to try and > change that. If you look at McCarthys boy, he > is no longer autistic...she even states that. Does > he have any issues...I would imagine that something > this severe that deals with your brain and other > major organs, would definitely have reprocussions. > But she has healed the gut, boosted his immune > system, cleansed his liver, used chelation, and put > him on the GFCF diet. She then got him therapy, and > now, he is recovered. I am encouraging those, who > still have issues that strongly alters their life, > to consider working on doing some of the treatments > out their to give the child a better life. I DO NOT > USE BIOMEDICINE! I do not think that that is the > answer, nor will I > ever. And of course I do not talk about these > things with her. I just think that these children > act out of the internal turmoil that is going on > inside of them...and it is a shame, that we as > parents, do not try and help them. If you are > helping them...then I am not referencing this to > you. > Amy > > > > > > > > > > Amnesty wrote: > First of all, I have known many kids who > are now indistinguishable in > a classroom full of typical peers...that doesn't > mean they are not > autistic, just that you can't tell right away. Many > of these kids > would no longer be diagnosed if they were tested > today, but no one > knows what the future holds, and I don't know anyone > who considers > them to be autism free. All of them had ABA (which > is how I met them), > some had biomedical intervention and some did not. I > also know many, > many more kids who have had every biomedical > intervention under the > sun with little or no improvement. > I'm thrilled for your daughter that she is making so > much progress. > That is wonderful news. However, I hope that you > don't talk to her > like you talk about her here. You continually use > words like " ruined " > and " damaged. " Just because she doesn't use the > words doesn't mean she > doesn't understand the feelings behind them. > Also, there are many, many people with autism that > grow up to live > independently, go to college, get married, and have > families. There > are some on this board. I have an uncle with autism > who is a > successful music therapist. He went to college and > lives independently > and has since he was 20, just like all his siblings. > He's not married, > but that's because he's gay...he has had long term > relationships. > Being autistic does not prevent those things. It is > perfectly possible > to accomplish all that without " recovery. " > I just hope that if your daughter does grow up to be > a happy, > independent, and still autistic, adult, that you > will be able to > accept her and be happy for her. In my experience, > that is a much more > likely scenario than recovery. > Amnesty > > > > I suppose like all of you, I have put up with the > angry, > disapproving stares of strangers when my princess is > in a meltdown > because she was brushed up against. You know. Its > the look of " Why > can't you control your child?' I've even been told > by relatives (mark > you, I do not call them family) not to come back any > more because my > childs unpredictability is " unfair to the other > children. " I've even > been told that " You are using your child's autism as > an excuse for her > behavior. " > > > > I choose not to be angry about this, because my > emotions are my choice. > > > > I've wathed other parents drop their kids off at > birthday parties, > supervised by adults, when I know that my child > needs my constant > attention to prevent mayham. > > > > I've seen her entire class invited to birthday > parties, and not my > child, knowing that the parents just can't handle > her behavior. > > > > So What! > > > > I spend my free time looking at clouds with > Evalyn, with her seeing > shapes that I can not imagine. I watch her while she > gives unknown > status to her dolls as we play family. Sometimes, I > just cuddle her, > when she permits, because like every parent should > know, its not about > me any more. Its about her. > > > > Some times, she talks, and sometimes she does not. > Sometimes she > growls and pushes me away, and that is okay, because > when I chose to > have a child, I chose to make her life about her, > and not about me. > > > > I spent the first two years of her diagnosis > studying every article > I could. From pharmacology to nueroscience. Then it > occured to me, she > needs a daddy, not another doctor. > > > > Tomorrow I don't know what will happen. Maybe good > and maybe bad, > but I don't really care, because I will spend it > with the greatest > gift I have ever been given. > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > Chef Amy > > Reel Thyme Cooking, LLC > > > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > Chef Amy > Reel Thyme Cooking, LLC > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 McCarthy can't decide if her kid is autistic or not, has never heard of autistic adults (though she has met at least three, I know them and they have pictures), and took her son's meds but can't name them. Not much a scientist, is she? Kassiane --- Amy Wittman wrote: > Missing the point....I am strictly speaking to those > who have not, or will not ever do anything to help > their child get better. I am not talking to anyone > that has done " whatever " to get results. Alot of > people get on autism groups, state how bad their > child acts, and will never do anything to try and > change that. If you look at McCarthys boy, he > is no longer autistic...she even states that. Does > he have any issues...I would imagine that something > this severe that deals with your brain and other > major organs, would definitely have reprocussions. > But she has healed the gut, boosted his immune > system, cleansed his liver, used chelation, and put > him on the GFCF diet. She then got him therapy, and > now, he is recovered. I am encouraging those, who > still have issues that strongly alters their life, > to consider working on doing some of the treatments > out their to give the child a better life. I DO NOT > USE BIOMEDICINE! I do not think that that is the > answer, nor will I > ever. And of course I do not talk about these > things with her. I just think that these children > act out of the internal turmoil that is going on > inside of them...and it is a shame, that we as > parents, do not try and help them. If you are > helping them...then I am not referencing this to > you. > Amy > > > > > > > > > > Amnesty wrote: > First of all, I have known many kids who > are now indistinguishable in > a classroom full of typical peers...that doesn't > mean they are not > autistic, just that you can't tell right away. Many > of these kids > would no longer be diagnosed if they were tested > today, but no one > knows what the future holds, and I don't know anyone > who considers > them to be autism free. All of them had ABA (which > is how I met them), > some had biomedical intervention and some did not. I > also know many, > many more kids who have had every biomedical > intervention under the > sun with little or no improvement. > I'm thrilled for your daughter that she is making so > much progress. > That is wonderful news. However, I hope that you > don't talk to her > like you talk about her here. You continually use > words like " ruined " > and " damaged. " Just because she doesn't use the > words doesn't mean she > doesn't understand the feelings behind them. > Also, there are many, many people with autism that > grow up to live > independently, go to college, get married, and have > families. There > are some on this board. I have an uncle with autism > who is a > successful music therapist. He went to college and > lives independently > and has since he was 20, just like all his siblings. > He's not married, > but that's because he's gay...he has had long term > relationships. > Being autistic does not prevent those things. It is > perfectly possible > to accomplish all that without " recovery. " > I just hope that if your daughter does grow up to be > a happy, > independent, and still autistic, adult, that you > will be able to > accept her and be happy for her. In my experience, > that is a much more > likely scenario than recovery. > Amnesty > > > > I suppose like all of you, I have put up with the > angry, > disapproving stares of strangers when my princess is > in a meltdown > because she was brushed up against. You know. Its > the look of " Why > can't you control your child?' I've even been told > by relatives (mark > you, I do not call them family) not to come back any > more because my > childs unpredictability is " unfair to the other > children. " I've even > been told that " You are using your child's autism as > an excuse for her > behavior. " > > > > I choose not to be angry about this, because my > emotions are my choice. > > > > I've wathed other parents drop their kids off at > birthday parties, > supervised by adults, when I know that my child > needs my constant > attention to prevent mayham. > > > > I've seen her entire class invited to birthday > parties, and not my > child, knowing that the parents just can't handle > her behavior. > > > > So What! > > > > I spend my free time looking at clouds with > Evalyn, with her seeing > shapes that I can not imagine. I watch her while she > gives unknown > status to her dolls as we play family. Sometimes, I > just cuddle her, > when she permits, because like every parent should > know, its not about > me any more. Its about her. > > > > Some times, she talks, and sometimes she does not. > Sometimes she > growls and pushes me away, and that is okay, because > when I chose to > have a child, I chose to make her life about her, > and not about me. > > > > I spent the first two years of her diagnosis > studying every article > I could. From pharmacology to nueroscience. Then it > occured to me, she > needs a daddy, not another doctor. > > > > Tomorrow I don't know what will happen. Maybe good > and maybe bad, > but I don't really care, because I will spend it > with the greatest > gift I have ever been given. > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > Chef Amy > > Reel Thyme Cooking, LLC > > > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > Chef Amy > Reel Thyme Cooking, LLC > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Well said. > > No one is telling you that you should accept her physical illnesses. But > autism is part of her brain make up, it is who she is. Just because someone is > so called " recovered " doesn't mean that they no longer have autism. It seems > that you think that we that " accept " our kids do nothing to help them better > themselves or to give them a better way of life. We are all advocates for our > children, we can all write a better IEP then the schools can. Some here do > diets, some do ABA. We do what we do to suit each of our child's needs. We are > not telling you to sit back and do nothing. But do not make it sound like we > all sit on our butts while our girls suffer with gut issues or seizures or > whatever the problems may be. I am able to say that I accept my daughter for who > she is and I will love her no matter what. Our kids sense our emotions, they > know if we think of them as broken. There is a difference in advocating for > someone and making her feel like she is damaged goods. > > As for recovery I am not really sure what you mean. Abby started out with NO > language, tons of sensory issues and delays in many area's. After years of > hard work she is now an honor role student with straight A's. She plays viola > and has friends. But let me assure you this, her autism is still there and > ALWAYS will be. I see it every day. So because she can function in society does > that make her recovered? No, it means that she has learned to adapt to an NT > way of life. Abby will never be made to feel that her autism is a bad thing. > It is part of who she is and I will always accept her for that and be there > every step of the way to help her. > > Pennie > Abby's Mom > > > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Well said. > > No one is telling you that you should accept her physical illnesses. But > autism is part of her brain make up, it is who she is. Just because someone is > so called " recovered " doesn't mean that they no longer have autism. It seems > that you think that we that " accept " our kids do nothing to help them better > themselves or to give them a better way of life. We are all advocates for our > children, we can all write a better IEP then the schools can. Some here do > diets, some do ABA. We do what we do to suit each of our child's needs. We are > not telling you to sit back and do nothing. But do not make it sound like we > all sit on our butts while our girls suffer with gut issues or seizures or > whatever the problems may be. I am able to say that I accept my daughter for who > she is and I will love her no matter what. Our kids sense our emotions, they > know if we think of them as broken. There is a difference in advocating for > someone and making her feel like she is damaged goods. > > As for recovery I am not really sure what you mean. Abby started out with NO > language, tons of sensory issues and delays in many area's. After years of > hard work she is now an honor role student with straight A's. She plays viola > and has friends. But let me assure you this, her autism is still there and > ALWAYS will be. I see it every day. So because she can function in society does > that make her recovered? No, it means that she has learned to adapt to an NT > way of life. Abby will never be made to feel that her autism is a bad thing. > It is part of who she is and I will always accept her for that and be there > every step of the way to help her. > > Pennie > Abby's Mom > > > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 " those who have not, or will not ever do anything to help their child get better " are probably not on this board. -Dana Priscilla's mom > > I suppose like all of you, I have put up with the angry, > disapproving stares of strangers when my princess is in a meltdown > because she was brushed up against. You know. Its the look of " Why > can't you control your child?' I've even been told by relatives (mark > you, I do not call them family) not to come back any more because my > childs unpredictability is " unfair to the other children. " I've even > been told that " You are using your child's autism as an excuse for her > behavior. " > > > > I choose not to be angry about this, because my emotions are my choice. > > > > I've wathed other parents drop their kids off at birthday parties, > supervised by adults, when I know that my child needs my constant > attention to prevent mayham. > > > > I've seen her entire class invited to birthday parties, and not my > child, knowing that the parents just can't handle her behavior. > > > > So What! > > > > I spend my free time looking at clouds with Evalyn, with her seeing > shapes that I can not imagine. I watch her while she gives unknown > status to her dolls as we play family. Sometimes, I just cuddle her, > when she permits, because like every parent should know, its not about > me any more. Its about her. > > > > Some times, she talks, and sometimes she does not. Sometimes she > growls and pushes me away, and that is okay, because when I chose to > have a child, I chose to make her life about her, and not about me. > > > > I spent the first two years of her diagnosis studying every article > I could. From pharmacology to nueroscience. Then it occured to me, she > needs a daddy, not another doctor. > > > > Tomorrow I don't know what will happen. Maybe good and maybe bad, > but I don't really care, because I will spend it with the greatest > gift I have ever been given. > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 " those who have not, or will not ever do anything to help their child get better " are probably not on this board. -Dana Priscilla's mom > > I suppose like all of you, I have put up with the angry, > disapproving stares of strangers when my princess is in a meltdown > because she was brushed up against. You know. Its the look of " Why > can't you control your child?' I've even been told by relatives (mark > you, I do not call them family) not to come back any more because my > childs unpredictability is " unfair to the other children. " I've even > been told that " You are using your child's autism as an excuse for her > behavior. " > > > > I choose not to be angry about this, because my emotions are my choice. > > > > I've wathed other parents drop their kids off at birthday parties, > supervised by adults, when I know that my child needs my constant > attention to prevent mayham. > > > > I've seen her entire class invited to birthday parties, and not my > child, knowing that the parents just can't handle her behavior. > > > > So What! > > > > I spend my free time looking at clouds with Evalyn, with her seeing > shapes that I can not imagine. I watch her while she gives unknown > status to her dolls as we play family. Sometimes, I just cuddle her, > when she permits, because like every parent should know, its not about > me any more. Its about her. > > > > Some times, she talks, and sometimes she does not. Sometimes she > growls and pushes me away, and that is okay, because when I chose to > have a child, I chose to make her life about her, and not about me. > > > > I spent the first two years of her diagnosis studying every article > I could. From pharmacology to nueroscience. Then it occured to me, she > needs a daddy, not another doctor. > > > > Tomorrow I don't know what will happen. Maybe good and maybe bad, > but I don't really care, because I will spend it with the greatest > gift I have ever been given. > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Maybe you need to be in a biomedical group? I have been in this group for years and lately find some of the emails coming across my desk distressing. No-one needs to prove to anyone what type of interventions they have used. They live with themselves. Also, many of us have older children. I suspect we all wanted to " cure " our autistic child when they were first diagnosed, but even after all the interventions fail, we press on. Most of us are familiar with your brand of " zealotism " , we felt it too, and can to a point, smile about it. However, it's reached the point that you are beginning to be offensive. Diane ('s Mom) > I guess we will just have to agree to disagree. You have said your take and > I have said mine. Our girls are what is important and we will each do what we > have to help our girls be all that they are capable of being. > > Pennie > Abby's Mom > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Maybe you need to be in a biomedical group? I have been in this group for years and lately find some of the emails coming across my desk distressing. No-one needs to prove to anyone what type of interventions they have used. They live with themselves. Also, many of us have older children. I suspect we all wanted to " cure " our autistic child when they were first diagnosed, but even after all the interventions fail, we press on. Most of us are familiar with your brand of " zealotism " , we felt it too, and can to a point, smile about it. However, it's reached the point that you are beginning to be offensive. Diane ('s Mom) > I guess we will just have to agree to disagree. You have said your take and > I have said mine. Our girls are what is important and we will each do what we > have to help our girls be all that they are capable of being. > > Pennie > Abby's Mom > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Yeah, I just read that. So sad, I know that must be frustrating for you! Do you know what services are available where you are now, and do you have a timeline for when they will start? Amnesty > > > I don't know what " biomedicine " is. > > > > > > Amy, what you need to realize is that there are LOTS of people who > > > have done everything McCarthy has and then some; their kids > > are > > > not responders. It's very painful for those families to continually > > > hear how they could " cure " their kid if they just did biomedical. > > It's > > > just not true in most cases. > > > > > > I'm a big believer in biomedical treatment for symptoms of autism. > > > Thankfully, Allie has responded physically to a lot of stuff we've > > > tried. In fact, we've done nearly everything McCarthy did > > years > > > before she did it. Allie still has autism. I think it's great that > > > 's son is doing so well, but that just isn't the case for > > > everyone and some sensitivity is needed, IMO. I have a dear friend > > who > > > used to drive from TN to Bradstreet's clinic once/mo to get her > > > daughter IVs & other treatments. They helped some but not > > completely. > > > She did/does a lot of other stuff. She still has horrible behavior > > > problems. I cannot tell you how painful it is when she's told she > > > hasn't done enough for her daughter. > > > > > > I would suggest you take time to get to know the parents on this > > board > > > before assuming the people have not tried anything to help their > > > kids/selves. Parents & those with autism need support and > > > encouragement, maybe it's just me, but I get the increasing feeling > > of > > > an offensive tone in your postings. If it's just me, I apologize. > > > > > > Debi > > > > > > > > > > > > > > > > > > > > > Chef Amy > > > Reel Thyme Cooking, LLC > > > > > > > > > --------------------------------- > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. > > Try it now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Yeah, I just read that. So sad, I know that must be frustrating for you! Do you know what services are available where you are now, and do you have a timeline for when they will start? Amnesty > > > I don't know what " biomedicine " is. > > > > > > Amy, what you need to realize is that there are LOTS of people who > > > have done everything McCarthy has and then some; their kids > > are > > > not responders. It's very painful for those families to continually > > > hear how they could " cure " their kid if they just did biomedical. > > It's > > > just not true in most cases. > > > > > > I'm a big believer in biomedical treatment for symptoms of autism. > > > Thankfully, Allie has responded physically to a lot of stuff we've > > > tried. In fact, we've done nearly everything McCarthy did > > years > > > before she did it. Allie still has autism. I think it's great that > > > 's son is doing so well, but that just isn't the case for > > > everyone and some sensitivity is needed, IMO. I have a dear friend > > who > > > used to drive from TN to Bradstreet's clinic once/mo to get her > > > daughter IVs & other treatments. They helped some but not > > completely. > > > She did/does a lot of other stuff. She still has horrible behavior > > > problems. I cannot tell you how painful it is when she's told she > > > hasn't done enough for her daughter. > > > > > > I would suggest you take time to get to know the parents on this > > board > > > before assuming the people have not tried anything to help their > > > kids/selves. Parents & those with autism need support and > > > encouragement, maybe it's just me, but I get the increasing feeling > > of > > > an offensive tone in your postings. If it's just me, I apologize. > > > > > > Debi > > > > > > > > > > > > > > > > > > > > > Chef Amy > > > Reel Thyme Cooking, LLC > > > > > > > > > --------------------------------- > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. > > Try it now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 This is beautiful! -- Cassie Belcher wrote: > I suppose like all of you, I have put up with the angry, disapproving > stares of strangers when my princess is in a meltdown because she was > brushed up against. You know. Its the look of " Why can't you control > your child?' I've even been told by relatives (mark you, I do not call > them family) not to come back any more because my childs > unpredictability is " unfair to the other children. " I've even been > told that " You are using your child's autism as an excuse for her > behavior. " > > I choose not to be angry about this, because my emotions are my choice. > > I've wathed other parents drop their kids off at birthday parties, > supervised by adults, when I know that my child needs my constant > attention to prevent mayham. > > I've seen her entire class invited to birthday parties, and not my > child, knowing that the parents just can't handle her behavior. > > So What! > > I spend my free time looking at clouds with Evalyn, with her seeing > shapes that I can not imagine. I watch her while she gives unknown > status to her dolls as we play family. Sometimes, I just cuddle her, > when she permits, because like every parent should know, its not about > me any more. Its about her. > > Some times, she talks, and sometimes she does not. Sometimes she > growls and pushes me away, and that is okay, because when I chose to > have a child, I chose to make her life about her, and not about me. > > I spent the first two years of her diagnosis studying every article I > could. From pharmacology to nueroscience. Then it occured to me, she > needs a daddy, not another doctor. > > Tomorrow I don't know what will happen. Maybe good and maybe bad, but > I don't really care, because I will spend it with the greatest gift I > have ever been given. > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 This is beautiful! -- Cassie Belcher wrote: > I suppose like all of you, I have put up with the angry, disapproving > stares of strangers when my princess is in a meltdown because she was > brushed up against. You know. Its the look of " Why can't you control > your child?' I've even been told by relatives (mark you, I do not call > them family) not to come back any more because my childs > unpredictability is " unfair to the other children. " I've even been > told that " You are using your child's autism as an excuse for her > behavior. " > > I choose not to be angry about this, because my emotions are my choice. > > I've wathed other parents drop their kids off at birthday parties, > supervised by adults, when I know that my child needs my constant > attention to prevent mayham. > > I've seen her entire class invited to birthday parties, and not my > child, knowing that the parents just can't handle her behavior. > > So What! > > I spend my free time looking at clouds with Evalyn, with her seeing > shapes that I can not imagine. I watch her while she gives unknown > status to her dolls as we play family. Sometimes, I just cuddle her, > when she permits, because like every parent should know, its not about > me any more. Its about her. > > Some times, she talks, and sometimes she does not. Sometimes she > growls and pushes me away, and that is okay, because when I chose to > have a child, I chose to make her life about her, and not about me. > > I spent the first two years of her diagnosis studying every article I > could. From pharmacology to nueroscience. Then it occured to me, she > needs a daddy, not another doctor. > > Tomorrow I don't know what will happen. Maybe good and maybe bad, but > I don't really care, because I will spend it with the greatest gift I > have ever been given. > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Amy no one is of disagreeing with what you chose for you daughter and many here are of doing the same.....seeking answers to make of their childs life better, some are of seeking to mend the medical infractions as what parent would not want of thier child to be of healthy. You are of new to this joureny and I to been in it all of the life of me and researched of it the last 10 years. You shared for every one that does not get a cure that one will and from that, that means you believe that 50% will recover, I to disagree as I to shared I to know many , mnay families who are or have done the same route and you and went bankrupt trying and the child did not recover. I to just want of to share to you because it fears me that the outcome may not be as you seek just as the many hundreds of families before you. I to also am not to say dont seek but do not do it to the exclusion of loving you and hte rest of you family. I to also know of some wonderful familes who seeked another route to teh exclusion and advocates so strongly for years for thier child but because they did not love of themselves and to excluded balancing out the life of them ended of themselves with cancers and such diseases and were of not able to live out long enough to see of thier child grow in adult life. I to say this not to discourage but to encourrage of you. Also in this one might benefit to research greif and its cycles and it is of healthy to cycle in and out of various staged but if one stays in one stage it is very unhealthy. hte gains you see are of good but also some have maked this same sort of developmental leaps without the use of any biomedical simply do to natural maturation but again not all will make of those gains without some sort of intervention. there are a number of kidos on the spectrum who maked of this same sorts of gains via ABA or RDI and other similar sorts of therapy. So whgile you are new to this journey and are of in the strong fix it stage of this journey please for you and you daughter take a nice break and enjoy a day out somewhere that isof mutally a calm and shared place for you both. Also to note if one seen of me as a child from all the little things shared to me from family and the birth mother of me, it was of very evident my life journey was of a classical presentaion of autism and over the life of me had growed and gained and got of marriage and kids and a life independent of the birth parents of me. there is quite a few of us who do again this is not the same outcome for all in autism, as some do not make the gains expected or seeked no matter what intervention was of used because no one tapped into the secret hidden code of sommunication for that individual person which left them misunderstood and isolated from getting their true inner needs met. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Amy no one is of disagreeing with what you chose for you daughter and many here are of doing the same.....seeking answers to make of their childs life better, some are of seeking to mend the medical infractions as what parent would not want of thier child to be of healthy. You are of new to this joureny and I to been in it all of the life of me and researched of it the last 10 years. You shared for every one that does not get a cure that one will and from that, that means you believe that 50% will recover, I to disagree as I to shared I to know many , mnay families who are or have done the same route and you and went bankrupt trying and the child did not recover. I to just want of to share to you because it fears me that the outcome may not be as you seek just as the many hundreds of families before you. I to also am not to say dont seek but do not do it to the exclusion of loving you and hte rest of you family. I to also know of some wonderful familes who seeked another route to teh exclusion and advocates so strongly for years for thier child but because they did not love of themselves and to excluded balancing out the life of them ended of themselves with cancers and such diseases and were of not able to live out long enough to see of thier child grow in adult life. I to say this not to discourage but to encourrage of you. Also in this one might benefit to research greif and its cycles and it is of healthy to cycle in and out of various staged but if one stays in one stage it is very unhealthy. hte gains you see are of good but also some have maked this same sort of developmental leaps without the use of any biomedical simply do to natural maturation but again not all will make of those gains without some sort of intervention. there are a number of kidos on the spectrum who maked of this same sorts of gains via ABA or RDI and other similar sorts of therapy. So whgile you are new to this journey and are of in the strong fix it stage of this journey please for you and you daughter take a nice break and enjoy a day out somewhere that isof mutally a calm and shared place for you both. Also to note if one seen of me as a child from all the little things shared to me from family and the birth mother of me, it was of very evident my life journey was of a classical presentaion of autism and over the life of me had growed and gained and got of marriage and kids and a life independent of the birth parents of me. there is quite a few of us who do again this is not the same outcome for all in autism, as some do not make the gains expected or seeked no matter what intervention was of used because no one tapped into the secret hidden code of sommunication for that individual person which left them misunderstood and isolated from getting their true inner needs met. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Pennie thaks for to share of that and yes the similar process over time happened for me , i to simply gained but slowly and no matter how much I to gained or try to blend or hide of it inside of me still is of the Sondra who I to always been inside and Sondra happens to be of a person who happens to have auitsm as part of me. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Pennie thaks for to share of that and yes the similar process over time happened for me , i to simply gained but slowly and no matter how much I to gained or try to blend or hide of it inside of me still is of the Sondra who I to always been inside and Sondra happens to be of a person who happens to have auitsm as part of me. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 --- Cassie Zupke wrote: > Amnesty -- > > Thanks for your explanation. I've seen a celebrity > (not McCarthy, > someone earlier who I don't remember her name now) > tell everyone that > her child had recovered from autism. But if you buy > and read her book > you'll see that he still needs an aide in the > classroom. I'm sure that > all her hard work has helped her child tremendously > -- but I felt she > was really misleading people by saying " If you do > these things your > child will recover too. " I would probably have > hailed her as a real > help if instead she'd said " Try these things -- a > lot of autistic kids > benefit from them. " > > Thanks also for reminding us (thanks to all of you > who have recently) > not to let autism be all we see in our kids -- for > us to treasure them, > autism and all. Some days that's harder than > others!! :-> I've known > many adults who now would have been diagnosed > Asperger's or autistic who > have gone on to have very successful lives. (Ever > visited the engineers > & computer programmers & scientists in NASA's space > program? It's like > Chucky Cheese's for adult aspies!) We all want to > make our kids' lives > easier. Thanks to you all for reiterating that we > are all working to > help our kids. I'd imagine folks who want to just > sit on their behinds > probably don't stay on this message board long -- > this place is all > about " what can you do to help your kid " . That's > one of the things I > like about it! > > -- Cassie > > Amnesty wrote: > > > First of all, I have known many kids who are now > indistinguishable in > > a classroom full of typical peers...that doesn't > mean they are not > > autistic, just that you can't tell right away. > Many of these kids > > would no longer be diagnosed if they were tested > today, but no one > > knows what the future holds, and I don't know > anyone who considers > > them to be autism free. All of them had ABA (which > is how I met them), > > some had biomedical intervention and some did not. > I also know many, > > many more kids who have had every biomedical > intervention under the > > sun with little or no improvement. > > I'm thrilled for your daughter that she is making > so much progress. > > That is wonderful news. However, I hope that you > don't talk to her > > like you talk about her here. You continually use > words like " ruined " > > and " damaged. " Just because she doesn't use the > words doesn't mean she > > doesn't understand the feelings behind them. > > Also, there are many, many people with autism that > grow up to live > > independently, go to college, get married, and > have families. There > > are some on this board. I have an uncle with > autism who is a > > successful music therapist. He went to college and > lives independently > > and has since he was 20, just like all his > siblings. He's not married, > > but that's because he's gay...he has had long term > relationships. > > Being autistic does not prevent those things. It > is perfectly possible > > to accomplish all that without " recovery. " > > I just hope that if your daughter does grow up to > be a happy, > > independent, and still autistic, adult, that you > will be able to > > accept her and be happy for her. In my experience, > that is a much more > > likely scenario than recovery. > > Amnesty > > > > > > > I suppose like all of you, I have put up with > the angry, > > disapproving stares of strangers when my princess > is in a meltdown > > because she was brushed up against. You know. Its > the look of " Why > > can't you control your child?' I've even been told > by === message truncated === ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 sorry you hads such a rough and challenging morning and yes as had many of them when my childrens were of little and had of tears too because of the expectations and the law says have to send of them to school but how do a mom on spectrum get of 4 kids ready for school that are of also on the spectrum and each having thier own issues. it was like of a domino effect if one was upset it caused the rest to go out of sync and by the time I to getted them all off to the school buses and such I to locked ofmy doors and sat with my blankets and just sat for a long time to recoup of the drained mental and emotionals states of me. Sometimes I to worked it off by to clean and clean and organize but mostly I to just say and rocked or watched of my TV more for the noise than the actions of people but that was of then. Now all of then can get of ready by of themselves with minimal prompts and or cues and all are of in their teen years. One day will just share of a one day of my life back then of the kids. many will be of to read and relate to it all and some will be to laugh and some will just wonder. but like jon and kate say this is a crazy life but it of our life. Sondra Quote Link to comment Share on other sites More sharing options...
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