The Ups and Downs of Living With an Autistic Child
A year after our child was given an ASD diagnosis, the word "Autism" still burns my tongue. It is a difficult word to say, but an even harder reality to come to terms with. In our eyes, our child is like any other child and means the world to us: he is the centre of our universe, concerns, conversations, occupations, joys and sorrows and our worries for the future.
Each anniversary or celebration reminds us of the milestones reached and barriers crossed, but also serves to remind us of what has not occurred, of our unmet expectations and of the arduous road ahead. It's simple enough, whenever we are surrounded by "neurotypical" children (which is most of the time) we are confronted by the fact that our son is "different." On the other hand, thanks to all the services he receives in the private and public system, he is making enormous leaps in the right direction. We must constantly remind ourselves of this fact. While comparing ourselves with others seems useless, I remember that I must compare my son with the child he was last year, not with the neighbour's child. This doesn't come as a natural reflex, but it helps us to move forward.
Draw no conclusions, take nothing for granted
There have been many positive lessons learned in 2013, which have been accompanied by many difficulties. Each challenge (the acquisition of language, potty training, introducing diverse foods, socialization) reminds us of all the work ahead, yet each new word, gesture, smile, and self-built LEGO fills us with joy.
Spending hours in the car accompanying him daily to his specialized centre in the morning (far from home), driving him back to his daycare at lunch in order to offer him the best of both worlds, going back to pick him up at the end of the day, trying to work in between those moments, running errands, shopping, struggling to prepare balanced meals for a child who only likes to eat pasta, having a minimally romantic relationship with each other, attempting to see our friends, in addition to managing the balancing act with numerous health professionals (occupational therapist, speech therapist, nutritionist, special ed teacher, behavioural therapist, psychologist and we could do more if we wanted to!), sitting in on monthly intervention plan meetings and filling in all sorts of forms has exhausted us.
Life no longer has the same zeal, but what nourishes us is the hope of seeing our son slowly emerge from the shadows, develop, and become a little man. Each day is a surprise and each victory seems arduously won over a once predetermined fate. What everyone takes for granted -- that their child speaks, looks them in the eye, says hello and goodbye, plays autonomously, has friends! -- we appreciate above all. For the past few months, our son has a friend. A real friend he met at the centre he attends in the morning, with whom he shares toys, knowing glances and bursts of laughter. Seems that nothing is lost, all is being created. Our child has his rhythm and we have adjusted to it.
The problems we are experiencing have forced us to keep the future out of our thoughts, as it would open the door to too much worry. What a strange concept it is to avoid thinking of the future! Because what else do people talk about? They talk about their projects for the future (vacations, travel, the education of their children, the birth of a second child, activities to come and family life). How do you avoid thinking about tomorrow? This new way of approaching life is acquired slowly, and with a lot of practice. We no longer live in a world of medals, trophies and extracurricular activities, we have been propelled into the world of the "present moment," outside all the usual measures of success.
This causes us a great deal of existential angst, but liberates us from the weight of unrealistic expectations. We don't run to violin classes or soccer practise, and we don't ask ourselves if our child will be head of the class, this does not fit into our current concerns. We have come to the conclusion that our family's survival depends on limiting our activities to one per day -- and no more. "Tomorrow is another day," as the saying goes.
In the end, what is most important is not to lose sight of what's most essential, what holds us together: the love of our child. Accepting that nothing will ever be the same has saved our relationship in the face of adversity. Telling ourselves that we had dreamed of something different, that we never dreamed of facing so many challenges. Knowing that we could count on each other despite the storm, however long it lasts. That it will take years to achieve a "balance" in our lives. That we have unexpected resources within ourselves.
After last year's strategic emotional retreat, comes the dawn of a time when it is crucial to think of each other. Because an exhausted father or mother has nothing to offer. Ensuring romantic interludes, participating in activities other than caring for your child, counting on the essential support of a few key persons, helps getting through difficult times. Most importantly, the continued desire to fight, to get up every morning and to tell ourselves that this is the only battle worth fighting.
Recently somebody told me "It is the children that choose their parents," if that is the case, then we are lucky he chose us. He will surely get the best of us and us of ourselves.
You can read this post on the Huffington Post