Louder Than Words

Amanda bought me Jenny McCarthy's latest book, Louder Than Words, for my birthday and I can't put it down. For those that don't know Jenny has a son who was diagnosed with autism. He also has a severe seizure disorder. But I digress...

When James was first diagnosed I was definitely feeling overwhelmed with info and underwhelmed with support. I was watching how Autism Spectrum Disorders (ASD) had taken over the front page of the news. It seemed like to be hip and cool on the morning show circuit you had to do a special at least every 2 weeks on ASD. The View even devoted an entire episode to ASD. But those weren't really for me. I knew pretty much everything they were saying and I understood that they were just trying to raise awareness. But I became increasing jealous when I would see celebrities come on TV to talk about how their child (usually a son) had been diagnosed with some form of ASD. They would describe the struggle to understand and the initial shock of the diagnosis. But then they would talk about how someone from Autism Speaks would call them personally to offer help and assistance. They would get immediately connected to some of the best doctors in the country and here I was having to fight every inch of the way to get James just the minimum of care. When venting this to someone once she said that it behooves groups like Autism Speaks to connect with celebrity parents of kids with ASD because they become almost like a celebrity spokesperson for the group. But I kept thinking that I needed help more than they did. They had all that money and could get any and all the help they needed. It was poor stay at home moms that needed a little extra something.

Well, fast-forward to the sometimes foul-mouthed Jenny McCarthy and her incredible memoir of her journey into the abyss of autism and her struggle to "find a window" out. My opinion had obviously been changing from my previous "me" centered martyrdom to a growing joy for the incredible strides that James was making. But then Jenny let me into her world and I really began to realize how incredibly fortunate I (we) really are. It is such a wake up call to hear of her anguish over "idiot" doctors, hasty diagnoses and experimental treatments.

Bottom line it really isn't about me or James or anybody else it really is about support and finding the mysterious missing piece to this already too big puzzle.

(I highly encourage everyone to read this book. It is a very fast read, although I should warn that Jenny is foul-mouthed and doesn't refrain from it in her book. But if you can get past that, and I recommend that you try, you will see what I finally see - All the parents of ASD kids need the same things: love, support and most importantly love!)