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Thursday, April 15, 2010

Self-fulfilling Prophecies and Service Providers who take advantage of parents.

It seems so sad to me that there are doctors who, when they diagnose a child with autism, would tell the parents that their child will never speak or be potty trained or live on their own.  It seems sad to me when parents mourn their child's diagnosis as if they were told that their child had died or would die next week.  Autism is not a death sentence!  How many children's parents gave up after being told their child would never say "I love you, Mommy" or be in a normal classroom or any of the other things that other parents take for granted?  How terrible!  It seems like this is a self-fulfilling prophecy.  If you and your child are told that what they have is all that is possible and they just have to deal with it, then isn't it possible that they will never try for better? 

What's worse is that there are doctors who will twist it and make it worse.  "Unless you take your child to a speech therapist, an occupational therapist, a behavioral therapist and take these medications and do chelation therapy and bariatric therapy and eat only certain kinds of food, then your child will be terrible and never talk to you and can't accomplish anything.  Parents spend their entire lives trying to make a better life for their children.  It's what we do.  And when we're faced with a problem we didn't expect then we ask professionals for guidance.  But what's terrible is when these professionals take advantage of us and our desire to do what's best for our children.  We spend thousands or millions of dollars on the various therapies and classes and diets that we're told will help.  But does it really help?

I can't afford all the different therapies that might benefit Aidan.  When he was diagnosed I was a single mom who made under $30k a year.  I didn't understand the GFCF diet, and didn't really see how I could consistently change his diet across all the different caretakers he had (myself, my mom, his babysitter) and even afford to buy the best possible foods for him.  Even though the doctor that diagnosed him said he needed speech therapy, I couldn't get the school system to agree, so I had to work with him on his speech.  I couldn't get them to do occupational therapy either (teaching him basic life skills like potty training or buttoning his pants or throwing and catching a ball) so I had to teach him those things. 

The thing is, I think I've done a pretty good job with him between myself, my family and most recently the amazing people at his school.  He talks more than ever, although you can't always understand him.  He's completely potty trained (which a year and a half ago I worried might not happen) and can button his own pants.  He's learned to ride a bike and throw a ball and play video games and play make believe.  It's all the product of a lot of hard work: his AND mine as well as my parents, Jeremy, our family and friends, and his teachers most especially Miss Annie. 

I guess I just feel like a lot of doctors and service providers and Jenny McCarthy's see parents who are desperate to help their child, and they take advantage of their fear and helplessness.  As parents we're supposed to be able to fix everything and when we can't then we feel like we're letting our children down.  There are people who prey on that and I really think they stink for it.  We're told our child can only be "cured" if we do xyz therapy and abc diet and take them to Dr. So-n-so, so we do what we're told.  Maybe sometimes the therapy is necessary, I don't deny it, but I think that a lot of it is ridiculous and experimental and outlandish and just a way to make money off of desperate people.

I'm done ranting now.

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