Thursday, March 24, 2011

A New Day

I recently "came out" of sorts. A situation arose in my family and at first we decided not to talk about it. I then quickly realized that I needed to. My son, Griffin is Autistic. The sheer mention of the word sends shock waves through every person you know. Before telling everyone we had Griffin evaluated. I wanted to be able to tell people exactly how the Autism would effect our youngest child. As I told my parents and in-laws I saw and heard the change in their voices and body language. It was fear, anguish and genuine sadness because we had already been through this with my brother Christian. Then I moved on to telling friends and acquaintances. I explained that Griffin is NOT Christian. That Autism is like a rainbow. The rainbow is an infinite arch that never seems to begin or end. It so wide and stretches so far. That is the Autistic spectrum. My little man is somewhere in the that spectrum. Where does he fall? Well, honestly...I don't know. Griffin is young. His abilities will change according to our course of action. We have changed his course already just by changing his diet. Imagine what we could do with more time. Oh wait, time is ALL we have!

After hearing the news that my son was autistic, I cried. I broke down. I was devastated. Every single time I looked at him I would burst into tears. How could this happen. He was so perfect. He was just quiet! I was in denial even though I was the one who wanted him tested because I knew...I ALREADY KNEW!!!!! I guess I just wanted them to say I was over reacting and when they didn't...I felt like I failed him. Or at least that's how I felt. After getting all my crazy frustration out and fears I stood up, shook myself back to reality and got insanely proactive. I started reading every book ever written on the subject. I was on the Internet for 6 hours a night reading about experimental treatments and supplements that had changed these children's lives. I decided that that was what I was going to do. I was going to change my child's outcome by changing what we put in his body. That's where the Gluten Free diet came in. Gluten is a protein found in Wheat, Rye and Oats. It has an almost allergic reaction to Autistic kids. Some people had tried this diet and their children's lives were changed. They began talking and making eye contact and some severely Autistic children even stopped having seizures(1/3 of children with autism have seizure disorders). The decision wasn't a hard one to make, I immediately removed all Gluten containing products from Griffin's diet. It was hard to do. Gluten seems to be a filler in every product I looked in. All his favorite foods would be gone. No more chicken nuggets, macaroni and cheese and no more OREO cookies. My poor boy! When it came down to it...I found alternative Gluten free products for all his favorites and he survived the transition. For several days during the transition Griffin went through a withdrawal period. His eyes were sunk in, he drooled uncontrollably and he was dazed and confused. After a 3 day period of this bizarre behavior he began to come out of it. It was almost like he was in a Gluten coma. His body was literally going through withdrawals! Now we are more then a month and a half out and everything is changing! Griffins eye contact is strong. He is saying more and more words and his sign language is increasing daily. The diet works and it's a miracle! I don't know how to stress to parents that are just given this diagnosis to become your child's advocate. We need to fight for these kids. Autism is a silent disability. These children look like every other child but they are in a FOG. We can lift that fog in most cases with simple changes like removing allergens and changing their diets.

Having Griffin evaluated by The Robert Warner Center at Children's Hospital of Buffalo was the first step in getting Griffin diagnosed and eligible for services. They in turn referred Grif to Erie County Early Intervention Program. Early Intervention is an amazing program that offers all services that your child needs until they enter school. Our first meeting was with a Special Education teacher and a speech therapist. Both evaluated Griffin and came up with the same conclusion. He is autistic, high functioning and will require speech therapy. We agreed the best course of action would be to find a speech therapist who specializes in Autism and is fluent in sign language. Signing is Griffins main form of communication at this point. What will happen with speech therapy? I don't know. Like I said before, only time will tell and we have all the time in the world.

How are my other children handling this? Like pros of course. I don't think they mind sharing me with Griffin more these past few months. He is starting to play with them more and interact. I think my boys will be well rounded and sensitive because they are surrounded by people with disabilities. To them it's normal.

Having an Autistic brother made me aware. Having an Autistic child made me a WARRIOR! EDUCATE
Below are some links that helped educate me on the this subject. There are thousands of web sites and informational sites out there. Have a question???? Feel free to contact me directly.

These are a few of the books I read recently:
Unraveling the mystery of Autism and Pervasive Development Disorder by Karen Serossi
Healing and Preventing Autism by Jenny McCarthy and Jerry Kartzinel M.D.
Mother Warriors by Jenny McCarthy
Louder than Words by Jenny McCarthy
Playing, Laughing and Learning with Children on the Autism Spectrum by Julia Moor
Cutting Edge Therapies for Autism 2011 by Dr. Mark Freilich