Monday, July 12, 2010

Learning the ropes

“During this ride, I wondered how other mothers with autistic kids dealt with it. Were they also lost in knowing how to get help? I couldn’t believe the red tape and the maze with no directions. What if I hadn’t started searching for help? What if no one ever told me there was help?”
-Jenny McCarthy, Louder Than Words

My biggest obstacle with getting Paxton help has been finding assistance. Everything I have learned about the system, I have learned on my own. You don’t get a pamphlet that says “hey your kid has a disability, here’s what to do next“. In fact, when I first mentioned my concerns about Paxton’s extreme sensitivities at his well child check-up, his normally thorough pediatrician blew me off. It was when I mentioned it to his early-childhood speech therapy caseworker, that someone finally shared the same concerns as I. She gave me the name of a pediatric OT who set Paxton up for testing which got the ball rolling for therapy. From there I had to ask questions about getting a diagnosis and an IEP for school. We’ve been waiting almost a year to get Paxton into a developmental center for an official diagnosis. A YEAR! That’s a year of unanswered questions and a year of time that could have been spent helping him. They say as many as 1 in 115 kids have autism. Why aren’t there more resources available to diagnosis and treat them? How many kids miss out on a critical time for therapy and services because their caregivers don’t know where to turn? Having a child with a disability has been an eye-opening process. There needs to be a better system in place to help these children get the help they so desperately need.

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