When Paula got pregnant for the first time many of our friends said something to the effect of “Oh my gosh, you guys are going to have the cutest baby ever!”. I felt a little nervous that our little guy might not live up to this expectation, but when Micah was born it quickly became clear that his cuteness met and exceeded all expectations. From day one he has been exactly as he should be and exactly perfect. As he grew we adapted to the wild groping in the dark that is being a new parent; and throughout sleepless nights, teething, ear infections and colds that wouldn’t end we were somehow able to not just survive, but to embrace all the challenging things that come along with all the amazing things that Micah brought into the world with him. We watched with wonder as he explored his ever-expanding world and we laughed at the ridiculousness of his- well, ridiculousness. We marveled at his smile, this miraculous smile, which has the ability to melt even the sternest of parental-disciplinary countenances.
When he was about a year old he started having great difficulty in situations with loud noises, lots of people and new or unexpected stimuli. More often than not he would scream and flail until removed from the offending situation. This was heartbreaking as it separated him and us from people, events and experiences that we loved. We tried countless different approaches but the response stayed mostly the same. Then at about a year and a half we noticed that his language wasn’t progressing as naturally as it seemed it should. We started the process of speech assessments and therapy, and his speech did progress, but in a way that was painfully slow and fundamentally different than other kids. Micah grew more and more frustrated with not being able to communicate and this only added to the tantrums that were now becoming part of daily life.
Slowly, the truth began to dawn on us that this was something different, something deeper than just speech or sensitivity. At the same time that we were understanding Micah more and more we were also starting to receive input from Doctors, family, friends, books, etc. that Micah may in fact be Autistic. Despite the initial fear and denial, as we looked into the specifics of the symptoms, behaviors, and underlying causes it quickly clicked into place with what we were seeing in Micah: the repetitive behaviours, the language delay, the sensory sensitivity, the lack of social awareness and interest. As parents who desired only for Micah to be happy and fulfilled in this life we had tried to not impute our own desires into his development or to dictate what kind of interests and pursuits he would have. So we resisted the idea of diagnosing his differences, but it soon became obvious that what was going on was something very real and that would forever affect the course of his life.
At the same time that we were moving from Edmonton to Vancouver, our awareness was shifting from a confusing and dimly-lit something to a well-defined and imposing Something. We became aware that, despite our trepidation, we needed to act and we quickly scrambled to find him a supportive pre-school, speech therapy, and doctor that could move us closer to getting an assessment. We acted first and felt second. We found out two important things: 1. Early intervention is key to gaining the best therapeutic results, and 2. The waitlist for an assessment is 9 months to a year. As we became certain that a diagnosis of Autism Spectrum Disorder would be given, we decided that a year was too long to wait to begin treatment and that we needed to pursue a private assessment, despite the considerable costs. As we shared these steps with our family both sets of grandparents stepped up and graciously offered to cover the cost of the assessment. Other family members selflessly pitched in as well. For a young family settling into a new city, with both parents making less in their new jobs and one in school part-time, dealing with all the fears, frustrations, and physical toll of two young boys- one with behavioural and cognitive challenges (and the other entering the terrible twos!), this was oxygen; it was hope and life. In your life you receive a small few perfect gifts: well-timed, generous and appropriate- a perfect connection of need and provision that embodies the true definition of the word ‘gift’. This is what Micah’s relatives gave him (and us), and throughout his whole life he will always hear about the love and warmth that his whole family surrounded him with when he was too young to do anything except feel it.
Right now we are being stretched beyond anything we ever expected. We also have an unshakable conviction that we are becoming better parents and people than we ever could have anticipated. Micah has already given us so much by who he is. We now find that he is giving us so much by who he is making us. There have been times throughout this that we have feared, despaired, grieved and ached. There have been other times that we have felt such joy, pride, amazement and deep, gut-wrenching love that no song, movie or painting could even come close to describing it.
Micah is amazing. The doctors say that his prognosis is good: he is intelligent, well supported, and shows great capacity to learn the things that don’t come naturally to him. This, for a parent, is sweet relief. But we know that he’d still be amazing even if this weren’t so, and that there will still be formidable challenges for him that other kids will never have to deal with. We are at this moment considering between various treatments options to help him integrate socially and cope behaviourally. It is daunting but we’re thankful to have these options of help for him. Micah is not broken, and he is not less than any other human being in this planet. He is not normal, but neither are we- or you! Despite our myriad fears and uncertainties we remain deeply confident that Micah has a special and unique gift to bring the world. His quirky, funny, sweet personality is already a gift to all those privileged enough to know him. We are only beginning this journey and are quickly seeing that it is well-worn by countless other families who have their own gifts and wisdom to share. We are thankful for those who are showing us and others how to raise a child with autism, or any other disability or challenge. It is our humble desire to carry this torch and raise Micah in such a way that he grows from a beautiful boy into a beautiful young man; one who gets to embrace all the sacred sweetness that this life has to offer.
Paula & Ryan, December 2013