We are a family living with autism. We know the lingo, enjoy resources and support, and have created structure in our lives to help our oldest son succeed. Yet, we were unprepared to learn of our younger son’s diagnosis. It sent us reeling and knocked us off the carefully crafted course we had created.
To friends and family, this news was also sad, but not completely out of context. Statistics show siblings have a significantly greater risk of receiving a diagnosis, especially boys. But knowing facts and numbers didn’t stop the flood of emotions from taking over.
I have been through the gamut of emotions before when our oldest was diagnosed. That day (I’ll always remember) began the grieving process, starting with denial and finally ending with some level of acceptance. I grew to understand how this would be a different adventure, but an adventure none-the-less. So why was the second time around so hard? Shouldn’t it be easier?
In some regards, it has been easier. The territory is not completely unknown. I had some frame of reference and context to what this may mean to our son and our family. I understood the medical terminology better and could ask educated questions on his diagnosis and prognosis. The upside was I was able to walk out of the appointment and clearly (with tears) share this news with my family. My first action wasn’t to Google the diagnosis, wading through pages of search results, looking for a glimpse into our future. I also knew who our care team would be and what therapies may be beneficial. From the looks of things, I could implement an action plan, and we would be on our way.
But knowledge couldn’t erase the sadness and grief. There was no short cut through the grieving to reach acceptance sooner. The stages of denial and anger would not be by-passed. I was surprised by this, thinking my previous experience would make this second diagnosis much easier to bear. Yet I found myself railing against all that I saw that “typical” children and families experience with ease. I cried thinking of the beautiful baby and toddler and our naiveté, we now recognize, that our son had beaten the odds of diagnosis.
Some things were different, though, even within the grief. The second time, my grief became more compartmentalized, dealt with between treatments for both of our boys. It waited patiently until the quiet of a waiting area or in my car on errands. It never left me, but shared time with my sense of urgency to Do Something.
I also found I was more efficient and effective in lining up services this time, and worked through my feelings simultaneously. I rallied to action faster and even more determined to get the very best resources…NOW. This time, I didn’t need to find my mission. I had already been on one. And this meant, at least a little bit, it was easier to accept a new one.
Yet, at night when the activity fades, I find my sadness returns and the reconstruction of the future I had once built for my youngest in need of a renovation. I realize, the second time around, the pain is not less but my resolve, that is greater.