I make no secret about being a deeply devoted parent to an autistic child. Sometimes my perspective, on parenting, becomes so focused, that I have to wonder if outsiders can tell who the autistic person is, in my family (there are only two of us). Hahaha…..it is good to laugh, and why not, does it really matter what a stranger thinks? I am grateful that love and hard work causes my family to blend, moments where there is no obvious distinction between autism and neuro typical (Neuro typical is a term often used to describe people who were born without obvious developmental disabilities. Often this term is used rather than more offensive terms such as ‘normal’). However, I am well aware my attitude does not necessarily reflect the experience of everyone influenced by autism.
I am trying to remember that my experience as the single parent of an autistic child is one experience out of so many. Make no mistake, being me, has a huge price tag. When I am sick, I still have to be aware of my son’s activities, his safety….is he using the microwave without supervision, is he going outside by himself, is he eating enough, did he eat a bag of marshmallows with a big glass of root beer for breakfast, again? I know that many kids might consider this the breakfast of champions. However, as many parents of autistic kids know, sugar that might set some kids up for a sugar high followed by a sugar crash, can be even harder on the emotions of our kiddos. On top of issues like these, my son is 13. He needs all most as much supervision now, as he did when he was 5.
My son did not ask to be born, did not ask to be abandon by his father; I wanted him, I brought him into the world. I know that it is completely on me to ensure that he knows he is loved, valuable, and significant. The easiest way to “love” someone is to love them on the basis of what is important to me. The more challenging way to “love” someone, is to love them in a way that focus’ on the things that are important to them. I consider the second option to be a higher form of love, the kind of love all children deserve.
I am not complaining when I say that parenting an autistic child can be emotionally difficult. I am convinced that it is at least as difficult, and probably more, for the child as it is for the parent. Making some kind of connection or bond can be difficult and sometimes painful for everyone involved. Autistic people often have very specific interests, interests that some people may find difficult to share. If the autistic is able to share their interests, the sharing may be limited and others may not be want to be involved. To some degree, I was fortunate because I did not know these things about my son or about autism, when he was a toddler. If I had known, I might have been stopped by the label of autism rather than just thinking of my son as another child who needed (my) parental input and interest in his life.
When my son was two, he became interested in Scientific Documentaries. The first documentary that he was really interested in was about Star Fish, aka Sea Star. This two hour documentary on the life of various types of Sea Stars was moderately interesting, the first time thru. However, my son really enjoyed this video, repeatedly, as well as other video’s of a similar type. I made myself sit and watch these scientific documentaries even though, for most of my life I did not like science. To add to that, I found documentaries dry and dull. And yet, because I was interested in my son and by defacto, whatever was important to him, I found it was possible, to become open to learning a subject I had once closed my mind to. My son was so enthralled with science, that he unknowingly taught me to see science thru his joyful preschool eyes. Gratefully, I learned to enjoy scientific documentaries. Of course now I know my son is autistic as well as how difficult it is for some parents to bond with their autistic children. Looking back, I had no idea how my sometimes bumbling attempts at loving my son, which included his interests, would result in the bond that we share. That bond, an interest in science, is a a source of conversation that works when things are going well, during long drives, while we are hanging out at home and for those days when things, between us, are not going very well. As I was striving to learn how to be a parent, I had no idea, when I was learning to appreciate science, motivated by my son’s joy, I was learning how to really love my him.
However, I have no idea what I would have done or how I would have managed to create a bond like this if I had, had other children, or a relationship with a spouse. The benefit of being me is that I have been able to put my whole energy into parenting my son. I often think of a friend of mine, who has twins, one is autistic, the other is not. I have so much admiration for her. She and her husband seem to have found a way to be good to each other, and still provide for the needs of both of their children. I have another friend who has several children living at home who are older than her autistic son. I don’t know how I would incorporate the needs of an autistic child into a group that was all ready established, that had norms, understood needs and specific forms of communication. Even though, I can’t imagine what it would be like to live with the dynamics of a different family, I know that all families grow and change. This is an inherant part of family, any family. Ultimately, part of the definition of family, as I understand it, is the capacity to grow, evolve, strive for inclusivity, but most of all, to love. To put as much love, as we can, into everything we do. And to do this no matter how big or how small our family is, even if it causes nosey onlookers to confuse us with being someone we are not.