It’s funny how the declarations you make in life come back to haunt you. You know – “I’m not going to gain this weight back” or “I refuse to give him any more chances”. Life is like that, constantly testing both you and your mettle. And, boy, did it test mine.
Before I had my children, I knew about autism. I knew because I have two family members on the severe end of the spectrum. I saw the Christmases robbed of fun, the endless repetitions of Barney on the TV, and the lack of interaction with the world. I remember the dreams of their parents for them and the excitement of the first couple of years before everyone began to worry. And I saw those dreams turn into worry and consideration for where these children might ultimately live one day when they cannot function on their own.
Because of autism, I was afraid of having a boy. A little irrational, I know. Yes, boys have autism at 5 times the numbers girl do. Yet, there are plenty of girls out there on the spectrum. But I feared it all the same. And when, after a week of believing a false boy reading on a sonogram, I was told my first child was a girl, I breathed a sigh of relief. A year later, after being told my second child would be a son, I worried. I remember telling my sister-in-law that I could handle anything – deafness, blindness, etc. – but that I wasn’t cut out to handle a child with autism. It would be too hard, too painful. Fast forward a year.
My son Callum was born at 9:21 p.m. following a 40 hour induction. Unlike his sister, who was born screaming her head off and didn’t stop for nearly an hour, my sweet little boy just looked at me. The nurses kept talking about what a sweet, calm little baby he was. And he really was. He has always been calm, happy, and smiley. Pleased to be just about any place we took him and content to just be snuggled. We kept joking that he was just the most content child on the planet and that was why he was so undemanding. When he didn’t talk right away, we just laughed about his lack of motivation.
But signs were there. We called his name, but he didn’t always pay attention. We showed him things, but he wasn’t interested. And he didn’t point. Ever. Because he was so social and didn’t have any sensory aversions, however, I wasn’t overly worried. Until the day I looked up to determine the cause of a slight fluttering sound – and saw him flapping his arms. And I knew – for I had heard that sound before. I attempted to make several deals with God that night. But, morning came, and I knew I needed to get busy.
At first, it was difficult to get anyone to really listen. Doctors saw a child who smiled and was affectionate. (Contrary to what you’ve heard, children with autism are capable of love and joy.) People assessing him noted a child not harming himself and not intolerant of being touched (not required for autism). Many encouraged us to wait and see. But waiting and seeing in a child with red flags on the M-CHAT who has a family history of autism wouldn’t fly for me. So I had to put up with people not taking me very seriously and acting like I was just overreacting. Fast forward another year.
Now no one is arguing anymore. It is obvious. He doesn’t play with toys. He perseverates and stims. He has used words, but not with any consistency. He has sensory integration issues. He has an official diagnosis of autism.
And our world has become the same world of so many parents of spectrum children. Appointments upon appointments. Audiologists. Developmental pediatricians. Special-needs dentists. Speech therapy. Occupational therapy. Physical therapy. Behavioral assessments. Special education. An IEP.
It has become a world of don’t knows and can’t guesses. Autism severity isn’t rated typically until the age of five, so we are waiting and seeing after all. Waiting to see how much language he develops and how he fares cognitively. Wondering if he will learn to read. Worrying that he might never be able to live on his own.
So I find myself doing what I thought was unthinkable – raising a child with autism.
But in that funny way life has of shaking you up, I now know what is unthinkable. It is unthinkable to imagine any kind of life without this precious boy of mine. This sweet, gentle, loving little boy who snuggles with me and holds my hand. This child who pulls my hand toward himself to be tickled and who leads me into the kitchen to request a cookie. His giggling and his delight in simply being himself.
So what do I wish for the world for Autism Awareness/Acceptance month? Simply that. Awareness and acceptance. For who people with autism are and what they need from us. For what they can contribute to our lives as well.
And what do I wish for my son? I want him to be happy. I want him to have the joy of sharing his thoughts and feelings with others. I want him to be free to pursue his interests, however eclectic they may prove to be. I want him to be free to travel between two worlds – the world of autism and our world – because there are remarkable and worthy parts to both. I want the world to accept him, both his differences and what we have in common. His mental wiring may be unique. But he is just as deserving of an education, of kindness, and the tolerance of those born without his challenges. And I, like every mother who has ever loved a child born different in a sometimes unforgiving world, plan to help – via education and advocacy - forge that path for him.
So, okay, Big Bad World. I’m putting you on notice. You better be good to my baby.
Leigh Merryday is a married school media specialist and mother of two young children. Her son, Callum, is two and falls somewhere on the autism spectrum. He is currently in speech, occupational, and physical therapy and also sees an infant child development specialist. She is very grateful for her two beautiful children, but still seeks to encourage others who go through the parenthood autism experience. Read more of her personal accounts at the Flappiness Is Blog.