After four years of motherhood, Emmanuelle Assor's life was turned upside down when her young son was diagnosed with an Autism Spectrum Disorder (ASD). It was at that moment that she decided to get involved and write about the subject. Why? Because hope drives parents, and hope for a better world begins with raising public awareness and understanding of developmental problems in children, problems that change lives.
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While watching the Sochi Olympics this past February I was blown away by the prowess of these young athletes doing flips and acrobatics on skis, jumping through the air on snowboards, defying the laws of gravity, and surprising me at every turn. Then one night I thought to myself that actually, our lives as parents with autistic children are kind of the same.
We are constantly juggling with difficulties, we jump really high, we fall, we get back up, and we start over again. Except we don't win a medal at the end. We grieve the loss of the "perfect" child, but we bear that grief in silence. We secretly cry, because we are ashamed of what we are feeling. We isolate ourselves out of fear of bothering others with our different child.
Ultimately, the complexity of our lives lies in living moments of fulfillment and sudden moments of intense difficulty, and never knowing when it will happen. One morning might be sunny and our child happy as usual, but a change in routine or something we ignored or didn't even notice can bring on the darkest storm. We must constantly manage negative emotions: sadness, daily worry, anxiety about the future, dreams that have to be pushed back despite occasionally unrealistic expectations, envy (one of the seven deadly sins!) when we hear a parent having a conversation with their child at the daycare next to our child who is staring off into space distractedly.
How do you deal with this internal struggle? I don't have any answers for now, besides being patient and believing in our child. A good dose of acceptance helps too. Our child is wonderful in his own way: I will never say it enough.
I also realize that nobody seems to have the answer.
Yesterday our child was a baby, today he is a very active little boy, always playful, and tomorrow we don't know what kind of adult he will be. However, we are beginning to discover his personality, his intelligence, even his sense of humour. He likes to laugh but is stubborn, a dreamer but affectionate, mischievous and very lovable.
To help us get through the bad days -- and they are numerous -- we have to remember that everything is temporary, both the good and the bad. We have to learn from our experiences: remembering that it isn't necessary to go see all the healthcare professionals to offer the best services to our child. On the contrary, each visit to a hospital in a strange environment with new faces has caused him (and us) a great dose of anxiety. In fact, many professionals specialized in ASDs confirm that the child should be treated in his natural everyday environment; something that seems to have eluded the medical personnel who booked us appointment after appointment, destabilizing our child in a hospital filled with endless hallways.
After two years of appointments with an array of professionals trying to help us, I came to a simple conclusion: it is useless to do so much. "Don't bite off more than you can chew." What parents of autistic children need is a one-stop shop for the services they receive. Why offer a few hours of speech or occupational therapy to an autistic child who will never see the person helping them again? And what is there to say about the services offered in the public sector? They were so disappointing for us who had been waiting for so long...
Help? Yes, but what kind of help?
Someone once asked me what helps the most. Certainly, it isn't to pity us, my husband and me. That casts us as helpless victims. "You are so brave!" or "I don't know how you do it" are meaningless words because you would do the same if you were in our shoes. You wouldn't let your child down. I have only met extraordinary parents on my journey. Devoted, brave, valiant, positive, sometimes sad, or in debt, often tired, but always keeping up the fight.
Of course, people mean well; everyone has a story about an autistic person they heard about who became a genius, understandably trying to give us some hope for the future. There are other parents who tell us that they also face challenges with their children, and that their children are not autistic. To those I say "Yes, I know."
And I add that what helps is not telling us how brave we are, but rather to grace us with your presence once in a while. Help us get our mind on other things. Remember to include us in outings where we can talk about everything and nothing. Invite us to take part in activities with your children; even if we will probably say no, because a new activity could quickly sour, simply because our child might not play with your children. Invite us anyway.
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