Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 , I debated whether to respond to you in private or to the list. I know this list focuses on the diet, but if the majority of us were not hoping for recovery, than why the heck would we be bothering with the diet (and other therapies), so I respond hoping that this may help others or at least encourage a few moments of deep thought over a warm almond muffin. We too are doing a SonRise program, two full- time programs actually. What I've learned from SonRise that I did not learn from the last 7 years of ABA, AIT, gf/cf, medical tests, etc, etc is that although I do want recovery for my children, I've learned to be comfortable with who they are now while I work toward that goal. (I'm probably really premenstral, so hopefully this won't sound too wishy-washy.) Before we started our SonRise programs, I just wanted a changed child and I didn't appreciate my kids for who they are now and how hard they try to deal with this world in the best way they possibly can. I found myself feeling so angry and also saying, " When is it my turn? " Then I watched my daughter fall asleep one night and I realized that this *is* my turn...it's my turn to still want recovery and an independent life for my kids, but it's also my turn to see love for what it really is...enjoying my kids for who they are right at this moment, for how hard they try every minute of every day, to step back and be amazed at how far they've come beacuse what may seem like a baby step to me is a huge jump for them. I used to worry about them getting older...now I see them becoming so much more beautiful every day. It's all sentimental hallmark stuff, and I still have recovery as the goal, but I'm not going to wish away my kids' childhoods by wishing for recovery overnight. This *is* my turn now, but my turn may take 5 more years to get there, and my kids deserve happy childhood memories in the process where they can look back and know that they were loved every moment along the way, no matter how wierd their noises were or how frustrated they got when they couldn't speak or when they just wanted to check out and stim for an hour...they'll know that someone wanted the best for them and their future, but was also loving them (and their autism) every step of the way. I look at other peoples' stories of recovery now and instead of thinking, " why not me?, " I've changed that response to be, " This is incredible, another recovery, we are changing the face of autism one child at a time...we can do this!...let's help them to stretch themselves just a little bit more today! " I believe love can do amazing things, and I don't doubt that we all love our children. But it's loving them unconditionally and expecting nothing in return that makes the progress and the journey so sweet, because in that we learn to deal with what is and who they are rather than who they did or did not become. Best of luck with your intensive...I'll be thinking of you this week as I head into the playroom! --Rose (Mom to (10) and (7), both ASD; and who wonders how the smallest drop of honey can leave the entire counter sticky by the end of the day!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Hi Alison and List, I feel very sad about the tragedy of . Months ago,I spent a lot of time trying to help her. I feel very sad that I have to correct some of it,but I have no choice because some of it is about my son. My son does not have Asperger Syndrome. My daughter does. My son originally had mute autism. It took years of education to get him to talk. I consider my son as someone who was born with a severe form of ASD. SCD has has been a great help for him. Yes,SCD works faster on the lighter cases. My daughter shows much faster recovery when she complies with the diet. It took me a lot of time to notice my son's progress but I am thrilled at the progress he has made. Doing SCD with my son is so easy because he is very cooperative but I am having a very hard time with my daughter. She has an amazing ability to sneak SCD illegal food when we are away from home. The situation with my daughter helps me understand that doing SCD correctly might be impossible for a small number of parents. also had a difficult time implementing SCD because her son would throw up at the sight of many foods . Since her son could only a limited diet could not eliminate advanced food from his diet. There were other conditions that made SCD very hard to implement in this situation. My heart is with and I hope that she finds the right cure for her son. All the best,Mimi > 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...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 I have a non-verbal child who is 8. SCD has changed some of his behaviors. He was in pain from foods that hurt his stomach and I thought he was having " autistic tantrums " according to the schools and PHD's. Someone had mentioned how can you tell with a non-verbal child what foods they react too. You have to take it one food at a time. They can't talk--- you have to observe them. It's just a like introducing baby foods to our babies. We give a food for a week for the reason of seeing how they tolerate it. We don't intro 3 different foods at the same time due to the fact how would you know which one it is. You know your child and you will know when they are acting different. My family and others have seen improvement with my son. He is not cured and maybe this is all we'll get but you never stop praying for more. I've learned that everyone we meet in this life is for a purpose(our children included). I've became so much more reliant on God and my prayers than I've ever done in my life since was born. Maybe that was God's purpose ~Sheri mom to 8/SCD 3 months Quote Link to comment Share on other sites More sharing options...
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