As a very "pro" Talk About Curing Autism/Generation Rescue parent, who does NOT HAVE A RECOVERED KID, I have kind of sat on the sidelines for this debate about recovery/cure/etc. that has been going on the last few days.
I do have an opinion on this and I think maybe the truly Asperger’s people who are having issues without causes, maybe they may be able to see things differently from my perspective as a parent of a nonverbal child, at least I hope they do.
For me, the parent of a "severe child with Autism" diet works, even if not for RECOVERY/CURE/Whatever word people hate today, DIET WORKS for “quality of life”.
Isn’t “Quality of Life” number one?
Even without recovery, I am telling you that I am not going back. I don't want that kid, and I don't think my kid wants to be that kid back. He was miserable, we were miserable. Life over all sucked!!!
Austin never had a firm stool, he slept 2 hours a night, no naps, he ran full force into walls, he had no idea what pain was. At the age of 3 he had never had a solid poop. He was in severe pain and his face looked like he was malnourished. He had sunk in eyes and looked like death warmed over.
6.5 years later I do not have that child, I also, again, do not have the recovered child.
What I have is a child who is part of my world, he SLEEPS more the 2 hours, he has firm poop, even if he does not always make it in the toilet, and he is thriving and looks like he is healthy.
For us this is HUGE!!!!
YES he has Autism, yes he has issues, and I am ok with this. His father is ok with this and I am pretty sure his siblings are ok with this. It beats the first 4 years of us life where all of our lives SUCKED!!!
What I am NOT ok with is the adults with Asperger’s or ND people of my child’s community commenting on “recovery/cure/or other words like this” if they say I am doing my child a disjustice. Honestly…
“No one would ever tell a parent of a child with Cancer to not seek recovery. How dare people think we are seeking anything different for our kids with Autism? We are not trying to change them; we are trying to heal them!” I made that statement about 4 years ago and I still stand by it today.
When Austin Primer tells me he does not want to comply with the diet we will have a different discussion.
When his team tells me my ways are not working we will also have that discussion.
So far we have done this for 6.5 years, and we have walked into every campus to a team who thought we were wrong and that diet and enzymes DO NOT WORK.
After 2 different school districts and 4 different sets of teachers/staff who specialize in Autism and special education and three main stream teachers, we have 4 special education teams who agree Austin is a different kid on the diet, 2 mainstream teachers who did not care to try or get involved and left it up to the special education team, and one main stream teacher who agrees, let me re word 1 mainstream teacher who made the effort actually knows Austin and agrees and so we have a unified front, DIET WORKS and Austin HAS to be GFCF, even if we do not have recovery.
Bottom line, ALL the TEAM agrees that Austin is healthier, and happier GFCF.
Why do I have to fight, argue, defend or do anything else to anyone? Especially a person with Asperger’s or HFA?
I am asking you all to step back and realize we are not attacking you or asking to change you. We are just speaking for our nonverbal, pre verbal, barely verbal and not fully verbal children. We vow to you that if our children become you, we will listen to your voices and appreciate what you tell us. Until then, we must treat Autism like cancer and we must fight it, full force and seek recovery. That is what good parents do, and that is what I do and will do.
Please help us be a community together and not divided. The media likes controversy lets take that from them and protect our silent victims who only have their vocal counter parts and warrior/PITA parents to speak for them.