Friday, September 4, 2009

Daddy, why do I have autism?

This question has been asked by my son on several occasions and sometimes I wonder how best to answer his question. It is really not something I want ingrained into him. I don't want him to feel labeled or that he is special needs or has an emotional issue. I try to answer his question with sensitivity, with compassion, with honesty, with integrity, with knowledge and most of all with simplicity so he can understand. I explain that sometimes we don't know why we are born a certain way but I believe that God made us all unique in his image and I believe that children who are born with autism as well as any kind of handicap or disability are special and are just as worthy of life's gifts. We all are born and if blessed we are nurtured by loving parents who are our link to survival. We are born dependent completely on our parents or loved ones and we grow and develop and learn from their care and love. We are very impressionable and we absorb so much in our infancy and are very aware. We know when we are hungry and when we are thirsty. We know when we need a diaper change and the first form of communication we have as babies is the ability to be heard and tended to through our crying. Our parents are in tune with us as we become in tune with them. Our brains help us to know this and to learn and absorb quickly. For an autistic child they are also in need of communicating but for some reason their timeline for learning and connecting with their parents is delayed and we really are not sure why. We know that it is important to be fed as that is an instinct for survival so even an autistic baby will cry when they are hungry or have other needs that have to be met.

The one difference that I have realized with an autistic child and a normal developing child is the way they connect. I remember when Matty was a little baby mainly from my wife's experience in caring for him that he very rarely made eye contact with her and she instinctively felt something was wrong right from the beginning. She also noticed that he seemed very preoccupied with movement of his play toys attached to his crib and very sensitive to sound. He was a good baby as I always tell him that. I just feel for an autistic child there seems to be a disconnect and I believe it has to do with the brain and signal transmission. I also have learned that seizures are an added concern for most autistic children and that also is related to the brain.

So when I answer my son's question the first thing I tell him is that "mommy and daddy know how special you are and we are so lucky to have you in our life. We know you have some times where you have moments of frustration and just want you to know that we all have those moments too." God created you and he made you special and he blessed us and wishes for us to learn from each other and that is how we all grow as a family. You teach us everyday and we hope we are good students so we can provide our best for you. I always talk to my son on a level of being his equal. I want him to know that we love and respect him and just think so very positive for him. A child of special needs seeks love and really when you think about it that is what we all seek. We want to have someone in our life who cares for us and we feel such unconditional love with respect to Matty. You probably wonder why I interchange his name between Matthew and Matty. Well my son seems to be sensitive to his name and when ever I call him Matthew he gets upset and lets me know it. So sometimes I forget and when he reads what I write he notices and he prefers I write Matty. He even discusses that in his very first blog as his introduction.

If you see the symbol for autism it is a puzzle with multi colored interlocking pieces in the shape of a ribbon. My interpretation of this is that the pieces of the puzzle represent the essence of autism and the fragile side of it. One missing piece is the key. There is unity in autism and the ribbon commemorates this and the diversity and continuum which is the spectrum that autism is categorized by.

I as a parent will always be the best advocate for my son but I also am very affected by his condition emotionally and I can not detach myself from him and his condition so I have to rely on helping him by reaching and grabbing hold of others who know and can be objective. Sometimes I feel very sad that my son has this condition and other times I feel it is a blessing in disguise. For autistic children I am fearful that the rise in the frequency of it will put so much strain on an already burdened school system. It just seem that the rise is certainly trending upwards and the level of care is still not adequate and the kids will suffer. We need to really take this issue very seriously because there future is dependent on it like a new born baby is dependent on their loving and adoring parents. These kids can not be overlooked. They have just as much a right for equality and fair treatment and a need to be heard. Former President Bush always said "No child left behind" I really wonder how sincere he was when he championed those words. Words are not the answer. Taking action is and that is what we need to do to protect our children's rights and interests.

I speak the truth and I speak from my heart because I know what it is like to love a child and to also cry for a child and to laugh with a child as I have had the pleasure of all of that but the crying part is the hardest because that means I am dealing with the reality of autism and that is the most frustrating thing of all but I would never show this to my son. I need to lead the way for him so he can have a life full of wonder, joy and dreams. Childhood is the gift of innocence and we only have that gift for a short while and it is a precious gift that we know is important as that is why we enjoy being parents because we get to experience the magic of it through our children. Autism should never take away that spark or desire in a child. In fact it should make their desire stronger. My son knows I am there to help him and that is what I want him to understand. I want him to know that he should always reach out to be heard and not be afraid to be who he is and I will be the first one with my wife by my side to let him know that. So now I will call my son Matty because that is what he wishes and I respect that.

Edward D. Iannielli III

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Please feel free to read my writings and leave a kind message or suggestion. Thank you. Emily