Ask parents of children with special needs and you will hear very different stories of diagnosis day. They may remember the exact date and time and it might even be marked on the calendar like a birthdate or anniversary. Some have been anxiously awaiting the date, at the culmination of months of genetic testing, or they may celebrate the date after years of trying to find answers. Others have constant reminders of a traumatic experience, such as driving by the hospital where their child was rushed to emergency surgery for any number of medical concerns such as a heart defect.
Our journey with Abram was gradual. Over time, we noticed he wasn’t developing like our older son or our friends’ children. We started making appointments with doctors and therapists.
Without even knowing it was coming, our diagnosis day arrived. I don’t remember the date and I couldn’t even tell you if it was hot or cold outside. I remember the events of the day and the mix of emotions I felt. It started out like any other visit with doctors and therapists, but it turned into a four-hour discussion about Abram’s diagnosis and helping us understand what a diagnosis on the autism spectrum meant. Driving home, I was struck by the thought that I should be reacting – crying, feeling something – but I just felt numb. I had not anticipated getting a diagnosis that day, or any day. While I knew Abram wasn’t on track, I never thought there would be a diagnosis to explain his developmental delays.
Looking back on that day, and thinking about other parents experiencing their own diagnosis days or perhaps dreading their anticipated arrival, I recall the shift in my mindset that helped me overcome the numbness and continue my forward march.
1. Our child has not changed
Nothing about diagnosis day changed Abram. He is God’s gift to us and the little boy we love with our entire beings. I still eagerly anticipate and celebrate his accomplishments and milestones, whenever they arrive. As with all of my children, I still plan for experiences to share with him and dream about his future. Abram has a diagnosis on the autism spectrum, but whether I know that diagnosis or not does not change him as a person.
2. Accept the diagnosis as a gift
While diagnosis day can be a mix of emotions, from shock and numbness to anger and despair, I realize the strongest emotion I felt that day was relief. This wasn’t a sigh of relief; it was the relief of having a clear vision and plan of attack. I felt empowered and driven, like a warrior given their sword, with the enemy named and mask removed. Now I could create a plan and focus on moving forward. I could connect with other families who have children with a diagnosis on the autism spectrum and we could learn from each other and create support systems. I could find organizations, specialists and therapists to help us on our journey. My heart aches for the parents who are still seeking answers, so I choose to think about Abram’s diagnosis as the day the questions and unnerving wonderings came together to offer us a clear place to start.
3. Keep my focus on the big picture
I never marked diagnosis day on the calendar. One reason is that it’s just my personality; I’m not great with the details. The other reason is that I made a choice to focus on the big picture. I realize not having the exact date etched in my memory is a gift unto itself, and it may not be possible for other parents to forget that date for their child. Whether I could remember the date or not, the important thing is my mindset around the events and the choices I make. I don’t remember the day in terms of where we were on the development charts and what milestones we hadn’t yet reached, or my shock at the diagnosis and the feeling of numbness. What I remember is that on that day, and on the really tough days since, I have chosen to pick myself up and continue moving forward.
When it comes to diagnosis day, I think the only thing everyone can agree on is that it turns your world upside down. There is no denying nor dishonoring those authentic emotions. Whether marked on the calendar or not, what’s important is how I moved forward from that day. As expected, the days that have followed have been a source of mixed emotions too, from really good days when we celebrate Abram’s birthday or another milestone, to really tough days when I feel anxiety about his future or fear for how other children will treat him. On diagnosis day and each day since, I have chosen to focus on what’s important and continue my forward march.