About Me

I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.

Tuesday, March 04, 2008

MESSAGES WE SEND...

I watched a home-made video today of a little boy who is in a foreign country
receiving stem cells. His father asks him, "What are they doing to you"?
The little boy replies, "fixing me"...
The father says, "that's right".

So, this beautiful, verbal, little boy...who happens to be Autistic...is feeling "broken".

The messages sent to this child, who has been through many procedures to "fix" him is
that he is not complete.

We, as parent's, need to be very careful of the messages we send to our children.
Children are very smart and no matter what, we need them to know that they are
not broken, even with Autism.....

I feel very sad right now...sad for all of the children who have been made to believe
they are "broken" and need to be "fixed"....

10 comments:

Domestic Goddess said...

Amen to that. It is something I try very hard not to do, to make them feel like there is anything wrong with them or anything that needs to be fixed. They are perfect the way they are. I am better for it.

Rachel said...

I agree! I was "smooshing" my son tonight (applying deep pressure), something we just started again, and he repeated back to me what I had explained to him: "This is something that sometimes helps kids like me who have Asperger's sleep better." Yes. It is not to "fix" anything or because there is something wrong, it just something that might help.

Anonymous said...

It is sad that people feel the need to "fix" their children if they have autism but to deny that children who have autism do not have any form of impairment as compared to children who are neurotypical is naive and does a disservice to parents and children. Would I want to "fix" my autistic child?--no. Do I want to help him as much as I can? You bet.

amy said...

When this story was first circulating a few weeks ago, I was watching a video from the family's local news station and my older son wandered up and said "Whatcha watchin?" so I explained (as best I could) that the family was trying stem cell therapy for their autistic son. Bear in mind that my older son is 18 and loves his little autie brother--a LOT.
He was shocked and a bit disgusted by what he saw. He said "But what's wrong with him?" and I again said that the little boy is autistic, and the family hopes this will cure him. He persisted "No, mom, I know that he is autistic, but what is wrong with him?" I persisted right back and told him once again that the family wants to cure the little boy. He sat for a moment and then quietly said, "But mom, there's nothing wrong with him. He is old enough to know that he is not sick. Don't his parents worry that he will think he's not good enough like he is?"
No one in my family would be naive enough to say that my autistic son has no impairments, whether we are comparing him to a neurotypical kid or not. But it's just not enough to go to extremes like this. The family featured has done so very many different therapies and procedures on this little boy. He doesn't need fixing--he isn't broken and he isn't sick. If a typical 18 year old boy can see it, why can't the kid's parents?
When is enough enough?

Anonymous said...

I agree that there is a point at which enough is enough. It seems that often the help that parents seek for their children with autism is more for the parents' benefit and less for the chidrens' benefit. While I do think it is valuable to help a child who is autistic I certainly do not agree with trying to "fix" someone--whether they have autism or not. Who gets to decide what people need to be fixed? It is a complicated issue that still needs to be explored and talked about.

Anonymous said...
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Anonymous said...

I am curious- how can you draw a firm conclusion from only 2 words said by a child with autism, about what exact message was sent and what was received ?
A conclusion strong enough to make you feel so "sad"?

I also don't get the concept of "enough was done". I understand issues such as : futility, lack of benefit, risks versus benefits etc. But these are rarely mentioned - people never seem to object to a treatment because say- it doesn't help. The real flames start when people feel that "too much" is being done. By whose criteria?

Assuming stem cells were a proven treatment for reversing autism, and this family chose to pursue it, even if that meant considering their son "broken" (whatever that means ???), would you still feel so sad?


Lillian

Anonymous said...

'So, this beautiful, verbal, little boy...who happens to be Autistic...is feeling "broken".'

Would you still feel sad if the child was not verbal? What do you feel the difference between a child who is neurotypical and a child who has autism is? Is the answer to become "blind" to any differences and thereby refuse to recognize that there are differences? Just because a parent may accept the fact that their child happens to have autism does not mean that they think he or she needs to be fixed but neither does it necessarily mean that they think there will not be potential problematic issues.

Anonymous said...

Autism is a reality. It is unfortunate that there seems to be a tendency for those who are living with it every day--whether themselves personally or a family member--are so divided in their opinions about autism. Do we "fix" it? Can we? Should we? Who gets to decide?

amy said...

Lillian-
I get your point, really, but I still am entitled to my opinion. Chances are, this family has only received positive reinforcement for this wild goose chase, with few, if any, voices to the contrary.
Point is, they have no earthly clue what the hell was injected into their child in Costa Rica. It could have been monkey stem cells for all they know.
$15,000 could have been spent on other things for this child, like a college or trust fund. Now this family is even further into debt for a procedure that has no chance of "returning the child back to his parents from his own world." Puhleez. That boy is not in his own world.
When you stand on the corner with a cup in your hand, you need to expect that people walking by are going to make some judgments about how you spend the pennies you collect.
Enough is enough!