August 13th used to just be another day in what had always been considered a crazy month for me, during my ten years in the world of student affairs. However, last year, August 13th forever changed my life. It is now the date I have often had to repeat to doctors, therapists, public schools, friends and family, as Gavin’s official diagnosis date. In many ways it’s hard to believe that it has already been a year. There are still plenty of days when his diagnosis still feels so new and so difficult to understand.
A year ago, when we received his diagnosis, I specifically remember listening to his developmental pediatrician tell us he was too young to truly know where he fell on the spectrum. She encouraged us to remain positive and to know that he could potentially catch up to a “typical” child’s milestones with the amount of therapy (20-25 hours a week) that she was recommending for him.
As parents, Doug and I gravitated to that positive comment and hoped that Gavin would in fact catch up to his peers. We had read several articles, at this point and time, about children who received a diagnosis only to learn that within a year of intensive therapy they were no longer considered a child on the spectrum. We left that appointment feeling overwhelmed by the diagnosis, but hopeful that he too would be one of the misdiagnosed children.
About a week later we received his official report in the mail and our hopefulness quickly turned to discouragement and reality. I despised reading the fifteen page report. Page after page my optimism about where he could be in a year quickly faded. The clinical language sounded so negative and failed to illustrate the beautiful little boy that we knew Gavin to be in our home. The line that made me weak in my knees and literally sick to my stomach stated, “His total score on the ADOS-2 is consistent with a “moderate to severe” diagnosis on the Autism Spectrum. What?!?! Where in the world did this come from now? What about the comment that he was too young to place him on the spectrum? We had been thinking for about a week that he had high functioning Autism based on his pediatrician’s comments. To put it simply we were nothing less than devastated.
All of the articles I had been reading about Autism did not prepare me for the heartache and pain that would follow. For a month I cried myself to sleep every night. I cried at the mention of the word Autism, I cried watching him “play”, and I cried trying to explain what was going on with Gavin to Kendall. At least once a week someone would tell me that God only gives us what we could handle, but I didn’t want to hear it; I didn’t want to have to handle it. However, after a couple of months had passed I finally accepted that I had to “handle” it!
I realized I was getting nowhere being sad and I was going to waste the enjoyment I could be having with Kendall and Gavin by thinking about the negative. I stopped concentrating on all of the things Gavin couldn’t do and started focusing on all of the progress he was making. That’s not to say that every day was perfect or that I never felt discouraged, but I made a conscious decision to strive for an attitude that was filled with hope and love.
So it’s a year later and here we are. Gavin is far from the definition of a “typical” kid, but regardless he is a phenomenal little boy! A year ago he didn’t know his own name, but now he can follow two step directions. He has developed his own language that his therapists, babysitters and the three of us in his immediate family understand. He displays an interest in wanting to be able to speak and we continue to pray that one day he will no longer be considered non-verbal.
And so begins our second year in the world of Autism. I know that this journey has a lot more challenges for us to face along the way, but I also know that we will continue to work through every struggle as a family. Gavin only has two and half months left with his therapist team. It will be extremely hard for all of us to say good-bye to them in November. Being an Autism parent means opening your home every day to different providers to care for one of your most prized possessions. In the year that we have been working with them, they have become a part of our family and I expect some tears to be shed when Gavin turns three and all of this “normal” for him comes to a screeching halt. They treat Gavin with so much love and dedication that we will definitely feel the void when they leave.
Here’s to another year of learning about this disorder, figuring out the process of completing an IEP and continuing to be Gavin’s biggest advocate. Thank you to all of our friends and family who have supported us this past year and continue to ask about Gavin’s progress. They say it takes a village to raise a child and we will never turn away anyone who wants to help support his development.