Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Penny writes : If I were a new parent I > would think " Oh great I'll do this and I'll have my kid back saying neat > little things to me " . Well that's not always the case. While I'm not > giving up I've come to the conclusion that I may never get my boy back. > Someday I'll have to accept that. I haven't yet and that's what keeps me > fighting. But I read letters like these and instead of inspiring me they > just depress me. Nothing seems to be the answer for me. I want my kid back > just as bad as the next person. I say my prayers. I research. I try new > things. I keep plugging away. When does it happen for me? He's seven and > he can't even do things a two year can do let alone talk to me. As I'm > reading this I'm crying. Crying for everything that's been lost along the > way. I'm crying for my daughters who have to see their Mom in turmoil all > the time. Who have to give up so many things for the sake of their brother. > I want our lives back but most of all I want my son's life back. When is it > our turn? Penny- You really aren't alone- The majority of familes do not experience " recovery " we experience highs and lows and we keep on plugging - We need to learn to accept our kids as being autistic- an illness which has many different manifestations- and variations- While many kids look very autistic at age 2 or 3 - some improve as they mature- while others , identical at age 2 or 3 in the presentation as others , may not improve. If we can accept that every treatment has possibilities for success and also for no success- and keep on plugging - never once thinking that we deserve " recovery " as a reward - Then we manage to survive. Accepting that we may improve our kid's functioning to some degree through our efforts- and that should be reward enough- . prevents us from being discoraged. We need to balance the needs of every family member when we look at what we can afford, ( right now my son is on the back burner- His sisters are of college age- the money is flowing in their direction - when they were younger- they gave up dancing lessons , trips to disney- He was on the front burner) not only financially but emotionally too- Sometimes a proposed treatment just costs too much- we only have so much hope to spend. We've been doing SCD since September- ( after 5 + years GFCF) as with other treatment modalities- we've had soem success and some setbacks- Attempting the use of Ghee set him into a month long fog. BUT he is trimming down - size wise- He gone from a 52 waist to a 46 in 11 weeks and the diarrhea is gone. At 19 he still can't hold a conversation but I know he is feeling better - and he is able to voerbally string more words together- ( since the Ghee fog has lifted) I'm not advocating giving up- I'll never do that - But remember that you do have a child who deserves a childhood with pleasant memories - who will need you alos to plan and prepare for a lifetime perhaps- If you spend every dollar you have trying to " recover " him - You harm him in the end. You are not alone - pray for strenght to continue, pray for acceptance- work to change the public's acceptance of our kids- make effective change through politcal advocacy, and keep on plugging - but also try to learn to live and enjoy . Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Sue: Thank you for your response. You have a great attitude. It's good advice. Sometimes it makes me feel better to vent to the masses. I always get private emails from people who thank me for being so honest. It's not the popular view that I exhibit but sometimes the honest view. I totally agree with what you said and I again I thank you for making me look at it this way. Merry Christmas Penny Recovery Penny writes : If I were a new parent I > would think " Oh great I'll do this and I'll have my kid back saying neat > little things to me " . Well that's not always the case. While I'm not > giving up I've come to the conclusion that I may never get my boy back. > Someday I'll have to accept that. I haven't yet and that's what keeps me > fighting. But I read letters like these and instead of inspiring me they > just depress me. Nothing seems to be the answer for me. I want my kid back > just as bad as the next person. I say my prayers. I research. I try new > things. I keep plugging away. When does it happen for me? He's seven and > he can't even do things a two year can do let alone talk to me. As I'm > reading this I'm crying. Crying for everything that's been lost along the > way. I'm crying for my daughters who have to see their Mom in turmoil all > the time. Who have to give up so many things for the sake of their brother. > I want our lives back but most of all I want my son's life back. When is it > our turn? Penny- You really aren't alone- The majority of familes do not experience " recovery " we experience highs and lows and we keep on plugging - We need to learn to accept our kids as being autistic- an illness which has many different manifestations- and variations- While many kids look very autistic at age 2 or 3 - some improve as they mature- while others , identical at age 2 or 3 in the presentation as others , may not improve. If we can accept that every treatment has possibilities for success and also for no success- and keep on plugging - never once thinking that we deserve " recovery " as a reward - Then we manage to survive. Accepting that we may improve our kid's functioning to some degree through our efforts- and that should be reward enough- . prevents us from being discoraged. We need to balance the needs of every family member when we look at what we can afford, ( right now my son is on the back burner- His sisters are of college age- the money is flowing in their direction - when they were younger- they gave up dancing lessons , trips to disney- He was on the front burner) not only financially but emotionally too- Sometimes a proposed treatment just costs too much- we only have so much hope to spend. We've been doing SCD since September- ( after 5 + years GFCF) as with other treatment modalities- we've had soem success and some setbacks- Attempting the use of Ghee set him into a month long fog. BUT he is trimming down - size wise- He gone from a 52 waist to a 46 in 11 weeks and the diarrhea is gone. At 19 he still can't hold a conversation but I know he is feeling better - and he is able to voerbally string more words together- ( since the Ghee fog has lifted) I'm not advocating giving up- I'll never do that - But remember that you do have a child who deserves a childhood with pleasant memories - who will need you alos to plan and prepare for a lifetime perhaps- If you spend every dollar you have trying to " recover " him - You harm him in the end. You are not alone - pray for strenght to continue, pray for acceptance- work to change the public's acceptance of our kids- make effective change through politcal advocacy, and keep on plugging - but also try to learn to live and enjoy . Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 It's called " Autism, Body Brain Connection " by Dr. Ellis. Jacquie is the one that turned me on to it. Check out www.targetedbodysystems.com/artvib9.html. Re: Recovery > > > Penny: > Now it is your turn. > What is your address? I want to write to you privately regarding the > recovery of your child. > I have every reason to believe that I will have my son back within 2 years or > less. He is very toxic due to the poison in the vaccines that were injected > into his tiny body (courtesy of the FDA). With the proper detox (NOT > pharmeceutical drugs!), SCD for the gut dysbiosis, the proper carnial sacral therapist > (ought to be covered by your insurance), and therapy (floortime) you CAN > recover your beloved child. I've seen it done again and again by this wonderful > doctor I'm seeing and am no longer in the despair I used to be because I know I > have the answer. The glass is 1/2 full. > Jacquie > Penny writes : > > As I'm > > reading this I'm crying. Crying for everything that's been lost along the > > way. I'm crying for my daughters who have to see their Mom in turmoil all > > the time. Who have to give up so many things for the sake of their > brother. > > I want our lives back but most of all I want my son's life back. When is > it > > our turn? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 How did you get the CranioSacral covered by your insurance?? What condition was listed???? My private email is mvostenak@.... Thanks. Re: Recovery > > > > > > Penny: > > Now it is your turn. > > What is your address? I want to write to you privately regarding the > > recovery of your child. > > I have every reason to believe that I will have my son back within 2 > years or > > less. He is very toxic due to the poison in the vaccines that were > injected > > into his tiny body (courtesy of the FDA). With the proper detox (NOT > > pharmeceutical drugs!), SCD for the gut dysbiosis, the proper carnial > sacral therapist > > (ought to be covered by your insurance), and therapy (floortime) you CAN > > recover your beloved child. I've seen it done again and again by this > wonderful > > doctor I'm seeing and am no longer in the despair I used to be because I > know I > > have the answer. The glass is 1/2 full. > > Jacquie > > Penny writes : > > > > As I'm > > > reading this I'm crying. Crying for everything that's been lost along > the > > > way. I'm crying for my daughters who have to see their Mom in turmoil > all > > > the time. Who have to give up so many things for the sake of their > > brother. > > > I want our lives back but most of all I want my son's life back. When > is > > it > > > our turn? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Al: I know you know this, but: There is no magic bullet for autism. Try to find the right combination, but PLEASE keep SCD as a mainstay in diet. We ALL ought to be eating this way.....The FDA and their lousy food pyramid (along with the plethora of vaccines) is only serving to keep us obese and unhealthy. Why do the masses look at their retoric anyway? Do your own thinking. Jacq Mom to vaccine damaged child, age 4. Mimi, If you read my post correctly you will see I am not refering to your son. I am refering to your child with Aspergers, who is, of course your daughter. You are incorrect when you say I was not able to eliminate some of the advanced foods from the diet. We started with the diet as printed in Breaking the vicious cycle. We began again a few months later when I found the website and, if you recall, I gave him only meat and squash for weeks. I followed this diet to the letter, even eliminating all juice in favour of water, as you will see if you bring up some of my previous posts. My situation is not very different from many hundreds of others out there. I have recieved many private emails in the last 2 days who echo my feelings. SCD seems to work for some, but not all, just like gf/cf doesn't work for all, neither does secretin, chelation, enzymes, FGF, homeopathy and on and on. If you have anything more to add, please email me privately. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Mimi, If you read my post correctly you will see I am not refering to your son. I am refering to your child with Aspergers, who is, of course your daughter. You are incorrect when you say I was not able to eliminate some of the advanced foods from the diet. We started with the diet as printed in Breaking the vicious cycle. We began again a few months later when I found the website and, if you recall, I gave him only meat and squash for weeks. I followed this diet to the letter, even eliminating all juice in favour of water, as you will see if you bring up some of my previous posts. My situation is not very different from many hundreds of others out there. I have recieved many private emails in the last 2 days who echo my feelings. SCD seems to work for some, but not all, just like gf/cf doesn't work for all, neither does secretin, chelation, enzymes, FGF, homeopathy and on and on. If you have anything more to add, please email me privately. . > > Hi Penny, > > > > I meant to reply earlier,sorry for the delay. > > > > My heart weeps for you, and I know how you feel because we are in > > exactly the same position. My son is a little younger than yours, > but > > so far we've tried most of what you have tried,ABA, gf/cf,sensory > and > > occupational therapy, speech therapy, SCD, Secretin for 6 months, > Son- > > Rise therapy 7 months- still ongoing, Lutein free diet, Body > ecology > > diet, 3 different homeopaths, every lab test out there, colonoscopy > > and endoscopy, endocrine testing, EEG, every new supplement ever > > invented plus environmental testing. Adds up to a fortune which we > > don't have - we cashed in our pension plan and with only 20 years > > till retirement I can tell you I am more than a little worried > about > > all of our futures. My husband is concerned we'll go bankrupt. > BUT... > > I keep plugging away because of all those kids who recover.......so > > why not my kid? > > > > I used to be inspired by the recovery stories. Now I am very wary > > because I've found out there is so much the parents don't tell you. > > We did SCD from May to October 2003, and during that time I posted > > over 90 messages asking for advice because SCD working for my son. > I > > ran an informal survey asking how severe the kids were who were > > doing so well. I didn't get many responses, but it turns out that > > most kids who recover on SCD were not very severe to begin with. > For > > example, Sue from Pickering - daughter age 4 - emailed me > > privatly several times. Sue is very kind and compasionate and she > > told me that s autistic symptoms were very very mild when she > > was diagnosed, mainly a language delay. Other moms like Mimi (List > > owner) said her kid was diagnosed with Aspergers - a much milder > form > > of autism. The original story that you refered to about Colin - he > > was diagnosed with PDD - again a milder form. It seems to me that > > these kids were not very severe to begin with, and all they had to > do > > was clear up a yeast/bacteria infection which SCD does quite nicely. > > > > I have met other kids who have recovered on other sites, one in 2 > > weeks would you believe! So I went after that therapy too and they > > told me to expect a turnaround in 2-3 weeks. It's been 3 months and > > I'm still waiting. > > > > Next month we are booked for Sensory Integraton therapy - Tomatis > > method - today I just read that Bernard Rimland and friends don't > > approve of Tomatis, they prefer Berard method. How do I know which > > one will work for us? I guess we'll try them both to the tune of > > $1000 each. In Feb we go back to the Options Institute in Mass. for > a > > week of Son-Rise intensive therapy with our son, $18,000 for the > week > > including travel etc. We live in a very rural area of Western > Canada, > > couldn't be a more inconvenient place to live with a child with > autism > > no services at all, have to travel at least 2 hours to the nearest > > large centre. > > > > My son doesn't speak, I have no idea what foods he can tolerate or > > not. No idea if he has a tummy ache. All the diets say add in foods > > one at a time to see if there is a reaction. What reaction? He is > off > > the wall one minute then fatigued and zoned out the next regardless > > of what he eats. He gets up in the morning making the wierdest > sounds > > and looking completely spaced out and he hasn't even touched a food > > or drink yet. It's beyond me how others can tell if there > > kid 'tolerates' a food or not. > > > > On Monday we went to our regular Cranial Sacral appt and our > > therapist had been talking to her friend who had offered to contact > > my son in the spirit world. " Sure, why not, " I said, " maybe we'll > get > > some answers. " Well, it turns out, according to her conversation > with > > my sons spirit that he is autistic because he beleives he was not > > wanted before he was born. This crushed me - he was and is very > much > > wanted. We also saw a healer last year who said our son is the > > reincarnation of my husbands dead brother, who died 7 years ago, > age > > 29 from pancreatic cancer. He had ulcerative colitis most of his > life > > and apparantly my son had come back to finish what his uncle did > not > > get done before he died - what ever that is. > > > > I feel like I'm going crazy with all this, and I grab onto anything > > that I feel may help. Like you, I don't want to accept it and feel > I > > must be missing something. After all, everyone else is " solving the > > puzzle " what am I missing? I also thought that just changing the > > diet, doing ABA and loving my son for who he is would make him > normal. > > So far it hasn't worked. I cry often for my son and his lost > > childhood, for my daughter who is growing up with so much pain in > her > > family and for my husband and myself - this is not what we wanted > and > > not the way it should be. Every day I wonder " when is it our > > turn? " " haven't I done enough? " and my biggest fear is " what will > > happen to my son if something happens to me? " > > > > For all those that have their kids on the road to recovery I am > happy > > for them. If changing the diet worked for them, then great. I wish > we > > could all be so fortunate. New year is a very sad time for me > because > > I look back to see if we accomplished all the things I set out to > do > > with my son. This time last year I was going to have him well on > the > > way to recovery and it was supposed to be a wonderful christmas. No > > such luck, so I'll make the same promise to myself for next year. > > > > I have recently started enzymes, read Enzymes and Autism by > > DeFelice, (like I need another book to add to the autism library I > > already have). Anyhow, it's worth a try. She has a website > > www.enzymestuff.com > > > > I guess I don't have any message of hope and inspiration for you - > > just to let you know that I too am wondering " When is it my turn " ? > > and " why are others so fortunate by just changing the diet? " > > If only it were that simple. > > > > Feel free to contact me anytime. > > > > Warm regards, > > > > . > > PS we are in the process of changing our email address - reply to > > caneng@t... 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Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi , Tell the moms who wrote to you to fill out our problem report. In the past,several mothers have written to me saying that SCD was not working for their child. When they filled out the problem report I was able to help them get better results. Some of these disappointed parents turned into 'SCD fans' as a result of the new improvements. The problem report is on our website. I will be able to help them at the end of this month. I am very sorry that we were not able to help you,but we certainly tried. I believe that there were about 3 parents that we could not help with private help. I am not claiming a 100% success rate but we have one of the highest rates for ASD treatments. All the best,Mimi > I have recieved many private emails in the last 2 days who > echo my feelings. SCD seems to work for some, but not all, just like > gf/cf doesn't work for all, neither does secretin, chelation, > enzymes, FGF, homeopathy and on and on. > > If you have anything more to add, please email me privately. > > . > > > > > > Hi Penny, > > > > > > I meant to reply earlier,sorry for the delay. > > > > > > My heart weeps for you, and I know how you feel because we are in > > > exactly the same position. My son is a little younger than yours, > > but > > > so far we've tried most of what you have tried,ABA, gf/cf,sensory > > and > > > occupational therapy, speech therapy, SCD, Secretin for 6 months, > > Son- > > > Rise therapy 7 months- still ongoing, Lutein free diet, Body > > ecology > > > diet, 3 different homeopaths, every lab test out there, > colonoscopy > > > and endoscopy, endocrine testing, EEG, every new supplement ever > > > invented plus environmental testing. Adds up to a fortune which > we > > > don't have - we cashed in our pension plan and with only 20 years > > > till retirement I can tell you I am more than a little worried > > about > > > all of our futures. My husband is concerned we'll go bankrupt. > > BUT... > > > I keep plugging away because of all those kids who > recover.......so > > > why not my kid? > > > > > > I used to be inspired by the recovery stories. Now I am very wary > > > because I've found out there is so much the parents don't tell > you. > > > We did SCD from May to October 2003, and during that time I > posted > > > over 90 messages asking for advice because SCD working for my > son. > > I > > > ran an informal survey asking how severe the kids were who were > > > doing so well. I didn't get many responses, but it turns out that > > > most kids who recover on SCD were not very severe to begin with. > > For > > > example, Sue from Pickering - daughter age 4 - emailed me > > > privatly several times. Sue is very kind and compasionate and she > > > told me that s autistic symptoms were very very mild when > she > > > was diagnosed, mainly a language delay. Other moms like Mimi > (List > > > owner) said her kid was diagnosed with Aspergers - a much milder > > form > > > of autism. The original story that you refered to about Colin - > he > > > was diagnosed with PDD - again a milder form. It seems to me that > > > these kids were not very severe to begin with, and all they had > to > > do > > > was clear up a yeast/bacteria infection which SCD does quite > nicely. > > > > > > I have met other kids who have recovered on other sites, one in 2 > > > weeks would you believe! So I went after that therapy too and > they > > > told me to expect a turnaround in 2-3 weeks. It's been 3 months > and > > > I'm still waiting. > > > > > > Next month we are booked for Sensory Integraton therapy - Tomatis > > > method - today I just read that Bernard Rimland and friends don't > > > approve of Tomatis, they prefer Berard method. How do I know > which > > > one will work for us? I guess we'll try them both to the tune of > > > $1000 each. In Feb we go back to the Options Institute in Mass. > for > > a > > > week of Son-Rise intensive therapy with our son, $18,000 for the > > week > > > including travel etc. We live in a very rural area of Western > > Canada, > > > couldn't be a more inconvenient place to live with a child with > > autism > > > no services at all, have to travel at least 2 hours to the > nearest > > > large centre. > > > > > > My son doesn't speak, I have no idea what foods he can tolerate > or > > > not. No idea if he has a tummy ache. All the diets say add in > foods > > > one at a time to see if there is a reaction. What reaction? He is > > off > > > the wall one minute then fatigued and zoned out the next > regardless > > > of what he eats. He gets up in the morning making the wierdest > > sounds > > > and looking completely spaced out and he hasn't even touched a > food > > > or drink yet. It's beyond me how others can tell if there > > > kid 'tolerates' a food or not. > > > > > > On Monday we went to our regular Cranial Sacral appt and our > > > therapist had been talking to her friend who had offered to > contact > > > my son in the spirit world. " Sure, why not, " I said, " maybe we'll > > get > > > some answers. " Well, it turns out, according to her conversation > > with > > > my sons spirit that he is autistic because he beleives he was not > > > wanted before he was born. This crushed me - he was and is very > > much > > > wanted. We also saw a healer last year who said our son is the > > > reincarnation of my husbands dead brother, who died 7 years ago, > > age > > > 29 from pancreatic cancer. He had ulcerative colitis most of his > > life > > > and apparantly my son had come back to finish what his uncle did > > not > > > get done before he died - what ever that is. > > > > > > I feel like I'm going crazy with all this, and I grab onto > anything > > > that I feel may help. Like you, I don't want to accept it and > feel > > I > > > must be missing something. After all, everyone else is " solving > the > > > puzzle " what am I missing? I also thought that just changing the > > > diet, doing ABA and loving my son for who he is would make him > > normal. > > > So far it hasn't worked. I cry often for my son and his lost > > > childhood, for my daughter who is growing up with so much pain in > > her > > > family and for my husband and myself - this is not what we wanted > > and > > > not the way it should be. Every day I wonder " when is it our > > > turn? " " haven't I done enough? " and my biggest fear is " what will > > > happen to my son if something happens to me? " > > > > > > For all those that have their kids on the road to recovery I am > > happy > > > for them. If changing the diet worked for them, then great. I > wish > > we > > > could all be so fortunate. New year is a very sad time for me > > because > > > I look back to see if we accomplished all the things I set out to > > do > > > with my son. This time last year I was going to have him well on > > the > > > way to recovery and it was supposed to be a wonderful christmas. > No > > > such luck, so I'll make the same promise to myself for next year. > > > > > > I have recently started enzymes, read Enzymes and Autism by > > > DeFelice, (like I need another book to add to the autism library > I > > > already have). Anyhow, it's worth a try. She has a website > > > www.enzymestuff.com > > > > > > I guess I don't have any message of hope and inspiration for you - > > > > just to let you know that I too am wondering " When is it my > turn " ? > > > and " why are others so fortunate by just changing the diet? " > > > If only it were that simple. > > > > > > Feel free to contact me anytime. > > > > > > Warm regards, > > > > > > . > > > PS we are in the process of changing our email address - reply to > > > caneng@t... Quote Link to comment Share on other sites More sharing options...
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