Autism: The Day Our Lives Changed Forever
On November 7th, 2012 our wonderful son was diagnosed with an Autism Spectrum Disorder (ASD). We were given a little folded pamphlet from the Ste. Justine Hospital's Development Centre, and were sent home.
Back home we explain to our friends and family that our son has PDD (Pervasive Developmental Disorder). It is less painful than saying he is autistic! "So it isn't Autism, then?" people ask us. Well, actually it means the same thing. We try to feel better by thinking and hoping it is only "mild." Then, after evaluating all of our options, we decide to register at a not-for-profit centre specializing in services for children with ASD and developmental disabilities. It costs the same as a mortgage on a new house, but it's so much better than waiting two years for the developmental centre to call us and offer their services!
Our first trip to the specialized centre is a family visit: we are all there and we are thrilled. Everything seems normal. The children are adorable. Their little lockers have their names and cute little photos on them. The atmosphere is joyous; the rooms are clean, modern, and colourful. Despite the pain we feel, we know our son will be happy here. We will finally be able to breathe. He will begin in January 2013, 4 hours a day, in an early intensive intervention program. All the studies show that it is what works best for autistic children, because the brain is still malleable until the age of 6.
New Year, New Start
2013 starts off very differently than 2012. We know where we are going, or at least we know in which direction. Our son is making progress; learning the basics of socialization, and developing language precursors. We are invited to parent workshops on subjects that interest us, such as sleep and language difficulties. We are beginning to feel like we aren't aliens! Other parents are going through the same thing as us. Obviously, every case is unique, as is every child. Some are verbal, others aren't. Some have difficulty with motor skills, others don't. But they all have parents, and those parents are forgotten by the system. We never think about how they are coping. The only support they can find is online where they can connect to each other, discuss things that matter to them and inform themselves. We discover that there are multiple support groups and discussion forums where all kinds of treatments to "heal" our children of this epidemic are discussed.
Because when 1 in 88 children are affected (the latest numbers from 2013 are 1 in 54) we are indeed talking about an epidemic...
Being the parent of an Autistic Child...
When you have a "special" child you automatically become a "special" parent. Some parents will say that their children's autism has given meaning to their lives. That it unlocked a new-found spirituality within them. Not us. Not yet. Our child's autism has not added any sense of purpose to our lives. It is nonsense; a collapsing house of cards; a bomb that exploded in our lives.
Our daily routine has become more complicated, and our social lives almost non-existent as we are always tired. Our interests and concerns are no longer the same as those of our friends with "neurotypical" children. Their problems seem minor to us, and we feel as though we live in a different universe. Whether we like it or not, a great divide has formed between us and the "others", and a new life has begun with its own set of challenges, pains, and joys.
Most people have children as a way of casting themselves into the future. It is a way to ensure the continuation of their line, their immortality. The self-centered accomplishment of all they ever wanted, but were never able to have. The child will be a sort of validating "mirror." For us it is different. We are forced to live one day at a time. It is impossible to plan for the future. We must also constantly remember to put things in perspective.
There are other parents suffering more than us. We meet them every day. There are children who suffer constantly, or die, while ours is alive, happy and smiling all the time! But we don't know what tomorrow will bring. We also don't know what caused this developmental problem in our child. Is it genetic? Caused by vaccines? Antibiotics? The environment? At the end of the day, that doesn't change our reality.
What we do know is that we love this child more than anything in the world. We probably love him more for having had to worry about and protect him since he was born. Even if we had envisioned a less difficult path, we accept him for who he is. Obviously we hope he grows up to be a happy, independent adult. This is what everyone hopes for their children.
One thing is for certain, Autism has taught us about patience, an underappreciated value, and about unconditional love. Our child is who he is, independent of us. The best we can do is to hold his hand when he needs us to. Every day we encourage him in what he does, and we love him very much. At each sign of improvement, our hope grows.
Hope that one day we will have a conversation with him, that he will have friends, interests, passions, and most of all, a life that makes him happy. Until then, it is imperative that we educate people about the real issues relating to developmental disorders and autism. "Rain man" is a movie. The reality of life with an autistic child is a whole different story. And when parents give us worried or confused looks at the park, I just remind myself that they can't possibly know, or even understand, and that it is up to me to explain it to them.
You can read this post on the Huffington Post