People who are afraid of a cure or a treatment that would eliminate the symptoms of Fragile X and autism - the sensory sensitivity, the anxiety, the quirks. The hand flapping. The spinning. The obsessive lining up of toys. The cuteness that many parents think is such a huge part of who their kids are. They believe these aspects of their children are the core of their personalities, and to take away these behaviors would take away the best of who they are.
They're terrified of a cure, or even an effective treatment. They don't understand why we'd want to "change" our kids. They argue that these behaviors should be accepted as normal.
They work hard on the idea that it's society that needs to alter its views, its perceptions, and accept our kids as normal. Not the kids that need to change, the kids are perfect just the way they are. The rest of the world is wrong.
And there's a lot of truth to that. Society does need to get used to the fact that we aren't all cut from the same mold.
Some people's personalities are easy to see and love. Some people's lights just shine so brightly, you can't help but notice and admire them. I think Fragile X keeps my boys' lights from shining as brightly as they would like to.
Excessive jumping and bouncing, yelling and screaming, rubbing their hands together, bizarre vocalizations, obsessive compulsive behaviors - these are not who they are. These make it harder to see who they are.
"Autism itself is not the enemy… the barriers to development that are included with autism are the enemy. The retardation that springs from a lack of development is the enemy. The sensory problems that are often themselves the barriers are the enemy. These things are not part of who the child is… they are barriers to who the child is meant to be, according to the developmental blueprint. Work with the child’s strengths to overcome the weaknesses, and work within the autism, not against it, to overcome the developmental barriers." - Frank Klein
The various parts of the Fragile X disorder - anxiety, sensitivity, learning problems, motor skill delays, speech delays, developmental delays -- these things are not who my kids are. They are a "barrier" to my kids' ability to be who they are meant to be. That's why we jumped at the chance to take part in the STX209 drug study. Because we want our kids freed from the barriers the Fragile X gene throws up on the path of their development.
I'm not afraid to change my kids. I know that I couldn't change their inherent personalities if I wanted to. But I can work to remove the barriers, so those personalities can shine.
You know my kids are developing normally, but I think I would feel exactly the same way in your shoes. Courageous post. (and no, the peas haven't worked yet. But U can tell he doesn't like them.)
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