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

Saturday, March 19, 2011

A taste of Spring...or not!

A taste of Spring...or not!

A moment in time is what Thursday seemed like. A brief fleeting moment of Spring like warmness that filled the air. You know the kind that brings couped up adults and children from their hibernation out into the wide open spaces in the neighborhood. Well that's what Thursday was. It was only 54 degrees but it felt like 80. I bundled my crew up and threw them out into the yard. It was amazing! I smelled BBQ's, watched planes fly overhead and saw 5 little boys running in circles almost confused about being set free. From every corner of the yard I heard little voices proclaiming "MOM, look at this.....", "Mom, look leaves, rocks, sticks" and the occasional "MOM, look at the dog poop!" OK, it was a long winter and I picked up thousands of petrified Sidney turds.I brought out toys that had been hidden for 5 months and BUBBLES!!!!! Bubbles are our favorite. We played for what seemed like hours. Then after the last toy had been put back into hibernation we went back inside. We where dirty and exhausted but it was so worth it! Will Spring ever come to the Western New York region? Maybe not now since it is again in the 30's but soon. Until then we will fondly remember our gentle taste of SPRING!

Saturday, March 12, 2011



What do you do when you find out your child may have a disability???? First thing is CRY! You cry for every child and every mother and every family that has ever gone through the battle that is headed your way. Then you put every ounce of everything you have into finding a way to give that child everything you possibly can. That's what we are now doing!

About 6 months ago I noticed Griffin had very little interest in playing with his brothers. He was content to sit and watch Baby Einstein and not interact with anyone. He would laugh and smile when I tickled him and he would love up his blankie but in general he was just sort of...there. He would hop and skip around the room and we thought it was so cute. He loved music and would dance when he heard even a car going by with the radio on. He didn't make eye contact and hated to be in crowded areas. I thought it was because I very rarely left the house with the kids and it was just anxiety.

After a few months I decided to make an appointment at The Robert Warner Center at Children's hospital. I knew it would take several months to get an appointment, and it did. I took him in and they evaluated him. When the Nurse Practitioner came back in with the results I knew what was going to come out of her mouth. I braced myself for the inevitable. She said "Griffin has a severe language delay. A severe to moderate cognitive delay and is showing signs of ASD.". ASD is Autism Spectrum Disorder. My heart sank. I held my head strong and told her I already knew it in my heart and that I was fine. I lied! She suggested he be evaluated by our counties Early Intervention program to set up a course of action. I agreed and left the building.

As I waited for the valet I looked around. There was a grandmother with an Autistic child around 4 years of age. He was aggitated by his heavy outerwear and was throwing his hat on the ground. The grandmother was discouraged and kept handing it back. There was a little girl with Down Syndrome waiting with her mother for a transport van and a new mother and father waiting in a wheelchair with their newborn baby girl for their car to come from the valet station. I began to feel the emotion of what I had just heard welling up inside me. Then my van arrived.

As I strapped Griffin in his seat I realized we had such a long road ahead of us. It was almost to much to bare. I thoughts back on the last 20 years that my mother had with my brother Christian who is a lower functioning Autistic man. I sat in my seat, put on my seat belt and started to drive. Within seconds I was sobbing. So much that I had to pull over. I mean I did EVERYTHING right!!!!! Everything I could do to prevent this...I did. My children NEVER received their MMR shot because that's what caused my brothers shift from a "normal" child to an autistic one. I read all the books and loved and cuddled him constantly. Now what???

Now what is right! I went home and decided I wasn't going to take this lying down. I had heard of people who were using diet and supplements to treat their Autistic children and I was going to do that and more! I am going to cure my sons Autism...just watch me!

That being said I ordered every book on the subject from Amazon. I researched every organization that ever had anything to do with Autism and I immediately changed his diet(per the books and organizations) to a GLUTEN or wheat FREE diet.

Well, this was over a month ago. Griffin is making some incredible strides with just the diet. He is communicating more and sustains eye contact. He has begun using sign language to communicate his needs. All from just a diet change. We are still waiting on the County to come in and set a course of action as far as therapies go. But as of today I am optimistic. I believe my son is high functioning and will go on to live as normal a life as he can. We will do everything in our power to make that happen!

{{{{ A small statistic for those who are unaware of Autism}}}} 1 in every 110 children are affected by Autism. 1 in every 70 are boys. This number has multiplied by thousands since the 1980's. We need to be aware of the dangers of vaccinations and the genetic link that doctors infaticly deny. Be aware and educate yourself. I continue to believe that we will cure Griffin. We will sure do our best. Please keep us in your prayers.



As most people know I have been homeschooling the triplets and Griffin since September. I have done my best to teach them the basics of what they will need to start pre-school. I know I started this with the intent of only doing it a year but as that time grows slowly to an end I am panicking.

Emerson and Maxim are still receiving speech therapy. At a recent evaluation Emerson was found to still have a significant delay while Maxim has just a slight delay. So at their CPSE review meeting this month it was the suggestion of the committee that they enter Pre-K in the Fall and continue speech services. OH NO!!!!! Am I ready????? Yes, I said "I". I really think it's me that's not emotionally ready to watch my babies go off and be taught by strangers. When Austin went to preschool I sat in the parking lot and cried for 2 1/2 hours until he was done!I know, I know...I'm an over attached mother! I must cut the cord, it just seems we are so quick to have are children grow up and be adults. I knew this day was coming, but I am in serious panic mode. In less then 6 months I will be left with just one child at home while 4 of my boys go off to broaden their horizon and get an education. SO SAD!!!!!

By the way, I am panicking a full 6 months before this will actually take place and they will only be going for 2 1/2 hours a day. Just imagine when it's Griffins turn! I will need a straight jacket!

Happy Birthday Austin

Look Who's 8!

Wow my BIG boy, my first son, Austin is 8. Where has the time gone? I'm not sure exactly. One minute he was babbling on the floor and the next he was talking back. Here is my birthday letter to him.

Dear Austin,
It seems like yesterday that we were on a big plane heading to a foreign land to meet our first son. We had know idea what was in store for us. We met this bright eyed intelligent little boy that completely WOWed us and we fell in love.

Fast forward 7 years. You are now the Lego King! I love your imagination and how you take notes on everything in your life. It makes me think that maybe you will love writing, just like me. I am proud that most of the time you are helpful with your brothers and although you struggle I know you are teaching them what's right from wrong. You are an amazing reader and are always ready for an impromptu dance party. You are a great son that brightens my day.

I know we fight and butt heads but know that I never stop loving you, ever...not even for a second. You have brought a joy to my life that I would have never known without the last 7 years. Thank you my son for all that you do. Always remember that I love you!

Your Mother