Three years ago my son received an autism spectrum disorder diagnosis. He was two years and ten months old at the time. I still remember every single detail of the day.
I remember lying restless in the guest room of our dear friends awake hours before the alarm. I remember that I lost my cell phone and we were nearly late for the appointment. I remember that my son thought we were embarking on a magical adventure. I remember the people we spoke to and the rooms we sat in. I remember the fear and worry and exhaustion. I remember a lot of things about that day. But there is always one detail that pops into my memory first. The memory of my beautiful boy with his big smile and a bright yellow balloon.
The journey to an autism diagnosis is not for the faint of heart. I am by no means faint of heart. I consider myself to be a pretty strong person. I have a good sense of who I am. I have known pain and loss in my life. But nothing could have prepared me for our journey. A journey filled with questions and waiting lists. More pre-screenings and evaluations than I can count. Hearing tests and speech assessments. Pediatricians, specialists, behavioralists, occupational therapists, speech pathologist, and psychologists. And this was all pre-diagnosis. For ten months our life was a journey to diagnosis. And endless quest for answers.
We were consumed with milestones and early indicators. The word “typical” quickly became a bad word in our house. Against my better instincts I googled everything that popped into my head. Once I even googled “does my son have autism?” As if google was a magic 8 ball able to answer the questions burning inside of me.
And as we walked into the testing facility three years ago my heart beat out of my chest. I lost myself in all of the possible outcomes. I looked at my two year old boy, still my baby really, and I saw the man he would become. I could not stop myself but wonder all that would stand between now and then.
It was a long day. There were moments of joy as we watched him run around the hospital as if it were an amusement park. There were moments of fear as we tried to see him through the eyes of the evaluation team. After all, how could they possibly capture all there is to know about him in a seven or eight hours? There were moments of sadness and exhaustion and anger too. We felt it all.
And before we went into the final meeting he pulled us into a gift shop and motioned towards the balloons. We let him choose a balloon as a reward to our big brave boy. As tired as I felt, I could not imagine how he must be feeling. He looked at the bunch of balloons and pointed towards a bright yellow balloon. A smiley face balloon.
And as we walked into that conference room he trailed behind us,that smiley face balloon flying high. And as they said the words no parent can ever be prepared to hear, that smiley face balloon zipped and bobbed around the room with my son. And as I fought back ten months of pain and tears, that smiley face balloon stared back at me.
And just 3 feet below that joyful balloon stood a joyful boy. No different in that moment than any moment before. Wiggly, smiley, and filled with joy.
The course of our lives veered that day; as it does many days as parents. I often refer to the autism diagnosis as the map to the journey we were already on. And if you ask my husband, I am not great at reading maps. But I am learning. Each day I know a little more about our journey. Each day I know a little more about my son.
And there are certainly moments of hopelessness along the way, but there are moments of pure bliss too.
I think that smiley face balloon was an ironic reminder that life does not have to be perfect to be wonderful. But it does have to be wonderful.