People With Their Greedy Hands Outstretched
I was on Google and saw a ad on the right side that said this:
1.
Yes - I Conquered Autism
And So Can Your Child.
Don't Manage Autism - End It.
2-B-Well.Org
So I clicked on it. The non double blind fantastic claims were made but here's the relevant part.
Question: What is the cost?
Answer: The Byonetics program for one year cost only $375 down and $40 per month.
When my kids were young, I remember it didn't take much for parents to eagerly jump on board when they saw stuff like this. Our kids don't need us to be in denial. They don't need us to use up our precious resources chasing rainbows.
Sorry if I sound preachy but I know too many parents, now, who don't chase rainbows anymore. Their kids are grown and the resources are scant. If those rainbow chasing parents had spent their time putting their heads together about real life, they might actually be proud of what kinds of solutions they come up with.
_________________
Time flies like an arrow. Fruit flies like a banana.
Autism has brought out the worse snake oil sellmen, they should burn in hell. Not only do they take money form parents deprate to make their child better but some of the crazy idea hurt the kids. I've never gone in for any of this and was acused of "neglect" for not taking my kids to be relined, poked and filled with suplments. Screw and anything without a good basic in fact.
ALL the crazy ideas hurt kids even if it's just tap water in a bottle with a Elixir to Cure Autism label. It causes parents to live in a world of denial, bonding with other parents who live in that imaginary world. Parents need to focus, accept the kids as they are and what they can do on their terms and stay objective about treatments!
When I meet up with other parents with kids like mine, we're like instant family. I wish we could build on those relationships.
_________________
Time flies like an arrow. Fruit flies like a banana.
A scared parent is the perfect target. Salesmen know to prey on the weak. A parents guilt can be easily turned into gold. That's why some parents will pay over $300 fo a car seat. They are no safer than an average seat, it's just "good" marketing. Now consider the vulnerabillity of a parent with a newly diagnosed kid. I agree that it would be lovely if parents always took the time to think rationally about the situation, learn about it, and accept it, but that would simply never happen. Enter profiteers. These are the people who truly make me sick! ![]()
I think you'll find WP members all on the same page. Not only do such treatments waste money, but also time, another precious resource. And, may, in fact, cause sensory stress to the child.
So many parents have said to me that they have to feel they've done all they can to improve their children's lives, or they will never forgive themselves. They seem to know it may be snake oil, but they are haunted by the "what if?" I think, for those of us with high functioning kids, its easy to say "forget it. My child will be fine." But if you have a child that seems to be headed to a life where they can never live independently? It becomes another matter. So I "get" where those parents come from, but I still think its a complete waste and denies the child the one thing that might actually help: intensive time with an adult who loves them and makes them feel secure. But to their eyes, since I have a high functioning child, my opinion does not matter. They can't connect to how the window from the high functioning can help parent the lower functioning, and they do live a life quite far removed from mine. I'd rather stay here than visit the places those parents haunt, but sometimes I worry I've chickened out.
_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
ALL the crazy ideas hurt kids even if it's just tap water in a bottle with a Elixir to Cure Autism label. It causes parents to live in a world of denial, bonding with other parents who live in that imaginary world. Parents need to focus, accept the kids as they are and what they can do on their terms and stay objective about treatments!
.
I so agree. I think these snake oil "cures" just drive a wedge between parents and children. And then when the child goes through growth and development, the parents misinterpret this as "cure" and redouble their efforts and then come crashing down to earth again when their child continues to be autistic- although autistic with more skills than they had last year since kids develop. Like DW-a-Mom said , it's also a waste of time that could be better spent doing other things that actually help, like outings to places the child enjoys or doing interactive things instead of always being in therapist's offices. But the snake oil salesmen feed the parents a line that they aren't good parents unless they do all these things because "you won't know unless you try".
My younger son is nonverbal and has some fairly horfing meltdowns. I hope that he will live on his own one day but I'm willing the face the fact he very will alway need care. From the place I'm at I cannot see putting him threw any more pain or discomford then what I have to. Blood work to make sure he's liver isn't shutting down from the meds he has to take to keep from trying claw his eyes out this is a must, shoving him in a inflable tube that I paid 6k for pain that he doesn't need. Putting a swing in the back yard to help him with his sensory needs sure actupunter no freeking way. Maybe because I know other parents who have had their childern die or are dying that I don't see autism as the "worst' thing that can happen to a kid. My sons alive and not in unending pain he's happy and for the most part does realy well with the cards he was dealt.
So many parents have said to me that they have to feel they've done all they can to improve their children's lives, or they will never forgive themselves. They seem to know it may be snake oil, but they are haunted by the "what if?" I think, for those of us with high functioning kids, its easy to say "forget it. My child will be fine." But if you have a child that seems to be headed to a life where they can never live independently? It becomes another matter. So I "get" where those parents come from, but I still think its a complete waste and denies the child the one thing that might actually help: intensive time with an adult who loves them and makes them feel secure. But to their eyes, since I have a high functioning child, my opinion does not matter. They can't connect to how the window from the high functioning can help parent the lower functioning, and they do live a life quite far removed from mine. I'd rather stay here than visit the places those parents haunt, but sometimes I worry I've chickened out.
I have a high functioning autistic son who, I think, has a good future as long as we patiently work together to move him in rewarding directions. He's so interesting.
However, I have a low functioning daughter who has seizures. What she could really benefit from is having other parents who have kid like her, working with us, sharing resources, making care givers feel valued enough to feel like part of the family. Too bad that most of the parents I knew who had kids like my daughter were busy chasing The Cure. Now a lot of parents are secluded and don't get out much because their adult profoundly autistic kids don't have a lot of options.
_________________
Time flies like an arrow. Fruit flies like a banana.
There's a group in Eugene, Oregon where a group of care givers/musicians started an organization that celebrates autism. They love autistic art. They love stimming and get into it, especially when they're playing music. They have retreats and everyone feels a strong sense of fellowship and acceptance. I wish there were more of this in the rest of the world.
_________________
Time flies like an arrow. Fruit flies like a banana.
Is that a re-birthing therapy? I never heard of that for autism per se but I have heard some fringe psychotherapists using re-birthing for pretty much any problem. A fresh start, they say.
Is that a re-birthing therapy? I never heard of that for autism per se but I have heard some fringe psychotherapists using re-birthing for pretty much any problem. A fresh start, they say.
That supposed to help with sensory integration for cesarean births? I remember someone telling me right after I gave birth that I was going to need to find some way to "make up" for the loss. I didn't, but I've wondered.
_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
Is that a re-birthing therapy? I never heard of that for autism per se but I have heard some fringe psychotherapists using re-birthing for pretty much any problem. A fresh start, they say.
This one was a inflable hyperbaric chamber they guy hawking it wasn't even sure how it help but swore it did.. I've been offered rebirthing as well but that was done with blankets and shoving the child down the threw them .Kids have died in the hands of these rebrithing wack jobs so no fliping way were they coming any were near my Jake. Maybe the worst one I'm come across was some crazy radom old asian guy claiming he was ordained in the philippines and trying to demand in a department store to be aloud to "lay hands" on Jake in order to "drive the demons out". Jake just real loved his new backpack and didn't want to take it off at the checkout so he was yelling a bit.
It would be so nice to find a group for parents and kids with Autism that wasn't so cure driven in New Mexico were I live if I ever get out from under the ever growing piles of washing I'm going to try and start something
In my trips to NM there seems to be a lot of hippies and yuppies there so that would explain a lot. Always out to change the world whether it be by drugs, magic or science.
I told my husband that the one thing that I like about going is that there is such a large Hispanic population that the fact that we have three children does not gain me so many "OMG You are killing our planet by breeding!" looks. Instead I just get a lot of nice older Mexican ladies cooing at the children and beaming at me about how wonderful it is to enjoy motherhood. >_<
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