I just finished Jenny's book, Louder Than Words A Mother's Journey in Healing Autism.
Wow. I wasn't expecting to like this book. I wasn't expecting to relate to anything that Jenny had to say.
I couldn't be more wrong.
I could relate to Jenny and her autism story in a way that moved me to tears.
She wrote about her life with her now ex-husband and her son Evan. She wrote with brutal honesty about her son's medical problems, his autism, her marriage, juggling her career, and moving on.
I wish I could give a more eloquent review. Jenny and Evan deserve that.
My mind is racing. I want to shout, "YES! This is what it's like!"
Like Jenny, I too heard the words, "I'm sorry, your son has autism" I too received a pamphlet and was shown the door. I also felt like a giant wave was crashing over my body and I couldn't see the air bubbles to show me which way was up.
I too, Jenny. I too.
I feel angry right now. This is the first time that autism has made me feel angry. I'm angry that more isn't being done to find out what is harming our children. I'm angry that no one listened to me when I said my son wasn't right. I'm angry that I went to a prominent developmental pediatrician who kept asking me if there were any schizophrenics in the family. I'm angry that my son is only three years old and has been seen by 47 healthcare professionals-doctors, therapists, evaluators etc ad nauseum. 47! I'm angry that I'm isolated and lonely and frightened and I do it all alone. I'm angry that I don't have the answers. I don't have the magic key to open the box. I don't have the combination to the safe and I don't know the chant to let the genie out of the damned bottle.
For those of us who live this life, you know what I'm talking about. I feel guilty sometimes for feeling badly for my son and our situation, because I know, it could be so much worse. My son is healthy and I do feel grateful for that, but damn, autism is a bitch!
Autism changes your whole world. In an instant. Blam! Crash! Autism, now what are you going to do?
You fight. You fight everyday and it's exhausting. Physically, mentally, spiritually...exhausting.
For the first two and a half years of my son's life, he slept very little and when he did sleep, he slept at odd times. It wasn't unusual during the first year of his life for me to go as long as three days without sleep. It wasn't unusual to go that long without eating either. As a result, I lost 70 pounds. That is correct. 70 pounds. I only needed to lose 30, so for a while I looked like walking death. I have gained weight during the last 6 months, but it's difficult to keep weight on. That has never happened to me in my life- Thanks, Autism!
I'm married- ok- erm. I can't even go there right now. Anger, yes. I have known my husband since 1977. We went to high school together. We were friends and we share a common history. The only way we could be farther apart right now is if he lived on the North Pole and I lived on the South.- Thanks, Autism!
I know from my reading and research during the past fourteen months that what I am experiencing is not unique. It hurts just the same. I know from the e-mails that I received that I am not alone. Those e-mails keep me going. They really do. I appreciate each and every one and I appreciate the comments from my blog posts. I know from Jenny McCarthy, of all people, that there is light at the end of the tunnel and I'm just waiting to see it.