Sunday, May 16, 2010
Autism and the bigger picture
Life is full of hopes and dreams, promises, joy, happy times, sad times, challenges, disappointments and heartbreak. We all are born into family and we all learn from our parents or guardians and the schools we attend in our childhood through to our early adulthood. We all have stories and experiences to share and when we are out in the world we are alone but we always have our support system which is essential and a major part of our life. Life is a mystery to all of us and we all seem to not always be completely sure as to our purpose or station in life but we each develop, mature and grow into young people who have goals, dreams, ideas, visions and talents. If we embrace all that we are and we strive to contribute and share our ideologies and a part of ourselves then we will be doing what we were meant to do. Love, encouragement, nurturing and protection that we provide to our children are the most important things which help shape them and give them the start they need so they can develop and grow to become responsible and happy adults.
If we were all the same in our talent and skill set and we all had the same temperament then all we would have to do was find a book that explained how to raise our children and we would be fine. However life is not that simple and we all are different in our views, ideas, visions and our approach. We all have different experiences and we all have different personalities and different conditions. Most children are born with no physical, mental or emotional impairments. They are considered "normal". However there are children born who do have physical, mental and/or emotional impairments and their lives and stages of development are far different from "normal" infants. In some case we as parents suffer heartbreak early as some of the babies born either die at birth or shortly thereafter or within a few years of birth. That is truly a difficult and very sad part of life and we are left to ponder why. This only goes to show how precious and mysterious life truly is. I have seen the gravestones of infants and babies and the little toys left behind by the parents and I have cried many times for both the babies and their parents and families. We must always remember the true gift our children are to us and the tremendous responsibility we have to raising and caring for them and teaching them and equipping them with confidence, love and hope.
I will offer my insight into what Autism is and how we are affected by it and what we try to do to help our son who lives with it every day. As is life, Autism is also a mystery and we are trying to understand the cause and find a way for others to understand it and not be mislead by it. Children who are autistic need love, understanding, encouragement and a voice to speak with just like normal children do. Autistic children in my view are unique and special because they have a tremendous capacity for digging deep within themselves and tapping into their true potential. I have seen the awesomeness of autism and how it leads children to do things that make us cry with emotion and restores hope and gives us such joy. When you witness a young girl sing the national anthem at a major league baseball game in front of a large crowd on national television and you hear the beauty and calmness in her voice and the sheer perfection she sings with you are literally brought to tears when you hear the words "and she is autistic." It means that there is nothing that can silence the words or suppress the dreams of an autistic child for if they find what they truly enjoy then they should be encouraged and given the opportunity to share their incredible gift and talent with family, friends, teachers and the world.
The girl I speak of is Gina Marie Incandela and she is on the Autism spectrum diagnosed with Asperger's and she was speech delayed up to the age of 3 like my son, Matty and she is a true inspiration to all and provides such hope and promise to all autistic children. Whenever she performs we try to catch it on youtube and save it as a favorite because she has really touched us and we are so very happy for her and her family and all the people she touches with her angelic voice.
Living with autism can be both a blessing and a heartache for some and we must learn to balance the two. The blessings are much more appreciated and it is important that we recognize the blessings because they will help the autistic child to blossom and grow. It is like planting a seed and watching it grow into a lovely flower. We have to care for it and trim it and make sure we water it every day so it maintains its beauty. With an autistic child who has a gift that is recognized we as the parents need to encourage and allow them to develop their talent and let them know we enjoy what they can do and allow them to share it with others when they are ready to. We must let them go at their own pace and must never push them and we must always know that they need plenty of love, nurturing and understanding.
I see with my son that he enjoys singing and when he is in the mood he really shines. We are trying to find a way where he can share this wonderful talent aside from the occasional karaoke performances in front of family and friends. If our son expresses the desire to take voice lessons I will be the first one to enroll him. If he wants an acoustic or electric guitar I will see that he gets it with good behavior. One thing I learned with autism is that our son has a lot of difficulties with conducting himself properly sometimes and in the classroom when he is unable to control himself it leads to problems. Our son has been dismissed from school on occasion for poor behavior and having meltdowns. It does get very frustrating and sometimes I feel I am not always getting through to him.
I have "sit down" times with him where I speak to him about these situations and I explain to him that he must understand that in the classroom and in school he must always follow the rules and listen to the teachers and respect them and his fellow classmates. I have responsibilities at work and I can not always get to the school to take him home because he is having a "bad day" so I simply tell him that he has to be on his best behavior or he will lose privileges and computer time. I have to work with my wife in getting through to him even when he fights us and he does offer resistance and we all get upset. I sometimes find myself getting frustrated and seeking help and my source of support is the internet and autism parent support groups and our parent trainer. I have been very philosophical about life these days and I try to find inspiration and guidance from God in getting through to my son. Autism does provide challenges and it is very important to never lose hope or give up. Believe me, I have thought about tossing in the towel on occasion and have come to my senses realizing that we must be courageous and always hopeful for our child's sake. If we give up what message are we sending to our child?
Our son needs us and we need him and I know in my heart I want to always be there for him no matter what. As I see things we live with uncertainty and we hope that things work out always. No one knows how long they have in their life and with their families and how prepared their families will be in their absence so it is essential that proper financial planning and support be put into place to assure the autistic child and family will be cared for and provided the necessary opportunities and they will be cared for and given the love, support and guidance they need. This always weighs heavily on me and though I promise I will be there for my son always we are all just making promises. This is one promise I certainly hope to keep when I say I will be there for my son each and every day and always.
I find life is such a puzzle with all the pieces scattered and we try to piece it all together and for most of us it takes a really long time to do so and not many of us are able to complete it and if we are lucky enough to come close we become unable to in the end and that is what life is all about to me. It is unfinished dreams and disappointments intertwined with joy and good times. Life is a wonderful tapestry of events and happenings shared with family, friends and loved ones and it is something each of us experience both alone and with others. Life is a gift that we all come to know and realize. I find it interesting that autism is symbolized with a puzzle too because autism and life go hand in hand and that is the bigger picture of autism and life spoken by a father who sees it first hand with his son who means everything to him.
Dedicated to my wife and son.
Edward D. Iannielli III