What did we imagine in those hazy years before parenting, before autism, before this new life was thrust upon us? Probably the same as all of you imagined. Giving birth to a chubby little person, nurturing them, loving them, watching them grow, being excited for every new (and expected) thing they learned or did. In my mind it was all mapped out, it would unfold just as it should. And, it has.
Let me tell you a little about our son Mylo. He is the most tenacious spirit you’ll ever hope to meet. He is bright and full of energy, light and love. He is painfully handsome, incredibly creative and all around brilliant. He is also mostly misunderstood, even by us, his parents.
Mylo is 3.5 years old and was diagnosed at 18 months with autism. From birth, his dad and I realized we had a child whose needs were both more complex and greater than we were fully prepared for. He was not a happy baby and we now understand that even then, his world was one of massive sensory overload, discomfort and frustration.
This life is not one we would have chosen, if someone had given us the choice. But there it is, we weren't given a choice. What we were given, was a little boy whose whole world is unique, from the way he perceives light and sound and touch, to the way he interacts with his environment and those in it. What we were given was our son, we were handed our hearts.
What we WEREN'T handed was a guide book, a rule book, a stick by which to measure progress, regression, sadness, heartache and break, anger, or uncertainty. What we weren’t given was the answers on what the best form of therapy was for OUR son and OUR family. We did our research and found that the most widely used and accepted therapy in B.C is Applied Behavior Analysis (ABA). This is the therapy that the Government funds because there is science-based evidence to support its efficacy. And so, new to this world, overwhelmed and hopeful we jumped in head-first to ABA.
Fast forward 2 years and we are standing at the precipice of new and uncharted territory. We have given ABA a fair shake, 2 years time and all our energy. Mylo has made some wonderful progress, although he still remains entirely non-verbal and most often locked in his own private world. My husband and I have been exploring a different style of therapy, one which emphasizes relationship development over behavior modification. Son-Rise is a parent and child driven model whose core idea is one of ‘joining’ your child in their world. This ‘joining’ facilitates the building of trust and through that trust, a bridge for them to WANT to come and join us in our world. How wonderful does that sound?
This is where you come in. Son-Rise is not a recognized therapy in BC and therefore our provincial autism funding does not cover the cost of training. The workshop is extensive and expensive and is only offered in the United States, all at our cost. We are asking for your help to take this leap of faith and provide our son with the opportunity to break free from his solitary world and find his voice. Every little bit helps.
Our life is hard, but it's also so incredibly full of wonder and joy at the smallest detail, the smallest achievement. I'm not sure that is something that every parent can truthfully say, that they live in the micro. We live and love there everyday.
Our son is the single most important aspect of our lives, and we would go to the ends of the earth and back if it would mean vanquishing his symptoms. We will fight for him, we will learn for him, we will sacrifice for him and not be too proud to ask for help for him. So thank you, one and all for supporting us, for listening to us and for loving us.