By Barbara Burnett
Alyssa’s story is not unique. Unfortunately, it’s being played - out in the lives of many other families struggling with autism.
My husband, Charlie, and I had long awaited the birth of our daughter, Alyssa. She was so beautiful and happy –perfect in every way. Like most parents, we had high hopes and dreams for her, and the person she would eventually grow to be. Everything was going as we had planned – life was good.
Our reality check came when, after a routine vaccination, Alyssa began to have seizures. She was left with profound developmental disabilities, and later a diagnosis of PDD-NOS, and eventually autism.
The news was devastating, and all I could dwell upon was the life Alyssa would never have. I also felt tremendous guilt and shame, as if I had done something to cause what was happening to Alyssa.
Our doctors were reluctant to speculate on Alyssa’s prognosis, and so I was determined to do everything humanly possible to make Alyssa “whole” again. We enrolled Alyssa in a birth to three early intervention program. We supplemented with additional speech therapy, OT/PT, and sensory integration therapy. We took part in numerous studies at the University of Washington. We were fortunate to have the resources to seek out the best and brightest providers to become part of Alyssa’s medical team. We were open to trying “alternative” therapy approaches, as long as there was no risk of Alyssa being harmed. We embarked on an incredible journey that would change us forever.
Alyssa has been in special education classes since the age of three. Alyssa “graduated” from Woodinville High School in 2008. It wasn’t the happy occasion it should be, as we were forced to confront the issue that has haunted us for years – what now? What opportunities are out there for Alyssa, who has autism, is non-verbal, has significant developmental, medical and personal care issues, as well as unpredictable behaviors? The answer was “not much.”
We know our situation is not unique. There are far too many families living the life autism has dealt them, and their lives will be forever changed. What hasn’t changed for us are the dreams we still have for our daughter – that she live a happy, healthy, and full life that has purpose and meaning; that she live in a safe, nurturing, and accepting community amongst her family and friends; and that she’ll be given lifelong opportunities to realize her full potential and be all that she can be.
Alyssa has been our inspiration on many levels with her unconditional love and trust. She has transformed us, and we are better people for it. With Alyssa as our inspiration, Charlie and I, along with many friends and colleagues have created the Tessera Center to serve as a lifelong learning resource full of education, social and recreation opportunities where young adults with autism and other developmental disabilities will be able to reach their full potential and live the life they’re entitled to.
So who is this beautiful young lady with the face of an angel? She’s a loving, sweet and spirited young woman who has a smile for everyone. Someone who is completely non-judgmental, and accepting of everyone. The person who is Alyssa has touched and changed the lives of many – mostly mine. No picture can tell the whole story, but this is what autism look like.