Raising a child is no small chore for parents however raising a child with autism is exponentially more challenging in my humble opinion. They say that great minds think alike and that may be the case here as I wrote this week’s blog post before I found the article below from The Organization for Autism Research (OAR) titled “It Takes a Village”. The folks at OAR and I seem to have had similar thoughts on this subject albeit four months apart. If you sit down and consider just how many people pass through your child’s life and how many of them make contributions as role models and/or advocates I think you would be surprised by the number that you come up with. Grandparents, aunts, uncles, cousins, teachers, lunch ladies, hall monitors, bus drivers and coaches are just a few of those that will influence your child on any given day so you are never alone in raising your own child. If you think about it, once a child reaches school age, they are spending close to 7 hours a day in the care of someone else whether that be a guardian in the case of a bus driver or monitor or an advocate such as a teacher or other school administrator. Summer vacation aside, your child is spending half of their time learning from and being influenced by someone other than you and I find that fascinating to a degree. With that thought still fresh in your mind, take a moment to think about how much quality time you actually spend with your child on a daily basis. Discard any time that you may spend doing job-related activities, yard work, cooking, cleaning, grocery shopping or any other tedious chore that you can think of and that 6-7 hours of quality time with your child slips away very quickly. That is why it is so critically important to make every moment count.
I think back on my own experiences growing up in New Jersey and there were a profound number of people, both adults and children alike that influenced how I view the world and the kind of person that I am today. I believe that we learn most of “what to do” from those closest to us whether that be your father, mother or sibling but conversely we also have to learn “what not to do” and often times that comes from our interactions with our peers and other people that we spend a lot of time with. Coaches and teachers have had a profound impact on my view of the world but not all of them taught me what I would consider the proper things to do. I have learned as much about how not to behave from any one of these teachers and coaches then I ever learned from others on how to be the person I wanted to be. I am fortunate enough to have witnessed great acts of kindness and selflessness but I have also experienced many dark unfortunate acts and situations that I wish I never had. I am a great believer in balance and the eternal conflict between positive and negative forces. My life has been one of extremes however the highs have very much been enhanced by the lows and that’s the way it should be. How can we ever appreciate the sun without the darkness or the warm without the cold? How can we expect to fully comprehend love without fully comprehending hate? The process of dealing with and interpreting these opposing forces is a difficult exercise for children on the spectrum. Autistic children have little patience or desire to interpret such situations and many only learn of their importance once they reach adulthood. Children that may be similar to myself at a young age are simply trying to stay afloat as they go out into the world each day, a world that can be cold and indifferent towards them when all they are doing is trying to survive.
As I circle back to my original point, it takes a village to raise a child but it takes a very special village to raise a child with autism. I will quote myself from a passage titled “We Lived It” from my upcoming book “Hello, I am Jim: A Family Story of Asperger Syndrome” where I stated that “You see, autism doesn’t just impact an individual. It impacts everyone that comes into contact with that person but most specifically their family. It’s fair to say that if one member of the family has autism, the entire family has autism.” In other words, if one member of the village has autism then the whole village has autism. The success of that child is entirely in the hands of the village (parents, grandparents, siblings, relative, teachers, lunch ladies, bus drivers, coaches, etc.) and it is within our power to help these children thrive and live fulfilling lives. This is especially true for children that are high functioning as they are not impacted by some of the limitations associated with lower functioning or non-verbal autism. These kids need and quite frankly deserve a boost from their village to help them get over the hurdles that they will face in life. When it comes right down to it, the skills that we teach these young people and the attitude we display towards them will largely dictate the degree to which they will be successful. It is our responsibility to help them understand their true potential and show them how to unlock it. I must admit that I get upset when I hear people make insensitive or uninformed comments about people with autism but especially when those comments are directed at children. There are times when I want to shout at the top of my lungs and liberate such people from their own misguided ignorance. No, my son will not outgrow autism. We will teach him to understand, embrace and harness his autism but he will always be autistic. No, my son’s autism will not be better managed if I employ more discipline or attempt to alter his personality as if he were some lab experiment. My son’s autism is beautiful and he is beautiful and why on Earth would I ever want to change that? In my eyes, he is absolutely perfect. I am reminded in these moments that these types of stereotypes and misconceptions are nothing more than a tug of war between positive and negative, knowledge and ignorance playing out in real time. While I wish I could educate everyone, I am content to start educating right here on my blog with a few people and perhaps they will spread the word.
My son Shane and I are part of a very special village and I would like to thank two very special women in my life who are almost entirely responsible for that. My wife Janine and my mother Lori are the living embodiment of love and empathy and our journey with autism has been their journey with autism. Let me tell you, that is a special kind of special. These are women of strength, commitment and extreme determination and they have both been instrumental in guiding our family through the turbulent waters of autism. The depth of my love and respect for these remarkable ladies is literally immeasurable and they make even the worst day with autism one that I would hate to miss. For more information about autism, family, myths and misconceptions, please follow one of the links listed below. I promise that you won’t be disappointed.