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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According to poet Paul Eluard, in life "there is no such thing as happenstance; only fated appointments." As my husband and I go through some of the hardest moments of our lives, I've come to a similar conclusion.
Ever since our son was diagnosed with an ASD (Autism Spectrum Disorder) almost two years ago, we have met a multitude of people. From speech therapists and occupational therapists, to nutritionists and pediatricians specialized in developmental disorders. All of these healthcare professionals contributed, in their own way, to our progress and acceptance of our new lives as parents of a "different" child. Of course, during each meeting we were confronted with the harsh reality that our child is not like other neurotypical children."If it's a language delay, they can catch up," said a speech therapist, insensitive to my pain, "but if it's a disorder it's a lifelong condition, and there will be long-lasting effects."
In the past years, we have heard plenty of comments like this. We've also filled out plenty of forms. It was always the same questions and always the same feeling of solitude when facing daily difficulties.
I can't deny that this new adventure has introduced me to some incredible people, however. One day when I was particularly tired, a neighbour told me about a respite service for parents of disabled children. This association, called Solidarité de parents d'enfants handicapés (Solidarity for the Parents of Disabled Children), offers parents four consecutive hours of respite for free, up to twice a month. It was the first time anyone had ever told me about this. It was a well-kept secret, like the majority of existing resources that you have to discover as you go.
Another woman who was clearly not blind, but was walking a majestic guide dog, explained to me that her two autistic sons adored the presence of this dog from the Mira Foundation. She told me how the dog had really helped them "come out of their shells," that they were taking good care of it, and that the dog had become a member of the family.
When we didn't know how to spend our weekends, a friend who was familiar with our situation told me about Gymno, adapted swimming lessons being taught at Notre-Dame College. We also heard about karate and tennis lessons for children on the autism spectrum. We slowly managed to organize our "new life" around useful resources offered to otherwise isolated parents who are worried about their children's futures.
Needless to say the best encounters are the ones that we expect the least. Once I met brilliant Asperger's blogger Marie-Josée Cordeau, I understood a lot more about my child and his way of seeing the world. By reading about her life and experiences on her blog, I was able to get a glimpse of the autistic universe and to understand my son. I learned that I have to enter his world and not expect him to conform to mine; that his perception of the world is different from my own, but that he is a sensitive and intelligent being. Sometimes I feel like he is like a little extraterrestrial, but I love him more than anyone in the whole world.
In order to delve further into my understanding of his universe, I also met with Alex, the son of a friend of my father's, who is a teenager with Asperger's Syndrome. Imagine my surprise to meet a beautiful 17- year-old; tall, handsome, bilingual, eloquent, sensitive, and articulate! His mother told me how, at age five, he mainly said two words: red and plane. Everything was either "red" or "plane."
For many years the child didn't socialize, didn't have any friends, and hardly spoke. His mother had no idea what the future would hold for him. But time went on and his mother believed in him and never lost hope. He went to a school that was adapted to his needs, attended courses with the help of a shadow, and this year he was accepted with honours into a respected CEGEP, without the need of a shadow, or any special accommodations. He also went to his prom with his girlfriend, and worked all summer as a camp counselor. This is a success story we all dream of.
When I met Alex I was most impressed by his depth and authenticity. He also explained to me that he often enjoys being alone. It is what he seeks out, and it brings him comfort rather than pain. He told me that he dreams of simple things: a house in the country (he loves nature), a woman by his side, a job as an architect (a field he is passionate about) but without too much stress, as he finds it difficult to manage, and a few good friends and family with which to surround himself. When I asked him what attitude I should have towards my son, he told me simply to never underestimate him. "Especially don't treat him like he can't achieve big things. He will accomplish what he needs to accomplish in this life. He will surprise himself and dazzle everyone around him by doing so."
Alex is only 17 but he understands some things better than I do as an adult. So I tell myself that everything is still possible, that we need to continue to dream, that nothing is lost. I look at Alex and I am filled with hope.
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