I remember telling Dr. Cowan when he gave us the diagnosis that it felt as if we’d been inducted into a club to which we did not want to belong. I’d have given my right arm not to be told she had a serious neuro-developmental disorder. That was 18 years ago when we talked about “cure” in the small circle of parents and providers living with and serving children with autism.
Seattle Children’s offered no services other than diagnostic evaluation and did not yet endorse ABA. There were only a handful of ABA providers in the state and insurance didn’t’ cover it so parents took out second mortgages, held fundraisers, went into debt to try and help their child. Our insurance didn’t even pay for the evaluation or speech therapy. I couldn’t find an organized parent support group and FEAT WA had only recently formed and was about to publish its first resource guide, a real gift at the time. A dedicated autism center was only a dream at Seattle Children’s as its Founding Fathers, Drs. Cowan, King, and Stobbe had yet to meet.
So much has changed since then. It didn’t take me long to realize how fortunate I was to have the support of my fellow parents and a growing number of providers wanting to serve our kids. Parents who were a few years ahead of me (you know who you are, you amazing trailblazers!) were taking steps to create some semblance of unity, collaboration, and coordination. Providers were scrambling to get credentialed, find office space, and open their doors to desperate families.
Today as I transition from Seattle Children’s Autism Center to a new role at the hospital, I have much to be thankful for.
Dear parents, I hope you always remember that you are never alone as there are so very many of us living similar, parallel lives, doing our best under difficult circumstances. Don’t suffer in silence. Tell someone if you are struggling and allow others to help. Yes, you are the quarterback of your child’s care but quarterbacks have a team and a coach or two.
Dear providers, I hope you always remember why we have the jobs that we do – the adversity of others. Autism is hard and unending. Working in this field is not easy and we are grateful that you have chosen to dedicate your career to helping make life a bit easier.
To the hundreds of families and providers I have had the privilege of working with over the years, thank you for all you have shared with and taught me. I am certain our paths will cross again so I will close with “till we meet again”.