Coming To Terms With The Diagnosis I Already Knew In My Heart

After a traumatic emergency C-section with my first son, the only way I can describe the scheduled surgical birth of my second son is like this: It was a delight. It was everything I dreamed it would be. Smiling faces, excited exclamations about his hair, his size, his sweet, chubby cheeks. They laid him on my chest as the doctor closed me up, and I experienced magic. Life before Walker ceased to exist. Like his brother before him, he was a part of me that felt both ancient and brand new. His soul was made from part of mine, and I felt it immediately. He was, and is, perfect. My second dream come true.

I knew even before we left the recovery room that my gorgeous new baby wasn’t exactly like my first son. When my mom came to see him just hours after his birth, she asked me how he was. I remember so clearly my unusual reply: “He is not Henry 2.0. He is his own boy. I can already tell.”

Throughout his first two years, Walker seemed to be progressing more or less on schedule, but nothing about his babyhood was reminiscent of my experience with my first. Over and over, I would tell my husband that I just felt like Walker was not quite typical.

My husband didn’t agree. Nobody agreed, actually. Nobody else could see it, but I was with him every waking and sleeping moment of his life. I couldn’t adequately put it into words, but I just knew.

I wanted to be wrong. I have never wanted to be wrong so badly. I rocked him to sleep many nights, caressing his sweet red hair, replaying little moments from the day and filing them away to discuss with his pediatrician later.

When our baby turned two, my husband started to see glimpses of what I had seen all along. Walker was brilliant and beautiful and happy and full of life. He was also not talking or playing like other kids his age, and didn’t always seem to be connecting with the world around him in a way that I knew a child his age usually does. I approached his pediatrician at his 30-month appointment, and she agreed to refer him for assessment.

Over the last 3 months, Walker has been in front of the best experts in our area.

Two days ago, a kind, gentle, earnest developmental pediatrician finally said the words I had been expecting all along.

“After reviewing everything we know so far, we feel confident that Walker meets the diagnostic criteria for autism spectrum disorder. Does that sound like Walker to you?”

I nodded through tears. I was relieved to finally have the diagnosis in hand. I was proud of myself for insisting on the assessment before anyone else. I was overwhelmed by all I have to learn. I was afraid to enter the autism community in my ignorance and risk offending someone. Most of all, I was just worried for my baby. I just didn’t know what this meant for his future.

The amazing doctor spoke with us for nearly an hour. He explained that autism presents in innumerable ways, and we can’t yet predict precisely how it will show up in Walker, but individuals with ASD are successful in every level of education, every profession, every hobby and every type of relationship on earth. He urged us not to change anything about our hopes and dreams for Walker, but to keep our minds open to following whatever path Walker chooses to take to his many destinations throughout his life.

The doctor discussed the results of Walker’s assessment, pointing out all of the places where Walker exhibited strength and mastery of skill. He also showed us exactly where Walker diverged from the expected behavior for a child of his age. He explained why he feels confident that a diagnosis of autism spectrum disorder fits our boy.

And then he gently reminded me that nothing about Walker has changed. Walker has had autism since that life-changing, magical moment when I first laid eyes on him. Even though I didn’t know yet, I have been able to be the exact mom he needed for close to three years. Walker is happy, healthy, smart, loving and sweet. The diagnosis just allows us to understand him better, and it will open doors to therapies and treatments that might be the tools our boy needs reach his full potential. It gives us a place to start.

We worked out a solid plan to support Walker’s success in the short term. He is not quite three, so we have lots of time to continue to figure him out.

I am still afraid I won’t be everything he needs, but I know I am trying my very best. I am embracing the beautiful mystery of the long term with eyes wide open. Discovering the many facets of life with a child on the spectrum will be a new experience for me, but I am ready for the journey.

Yesterday morning, Walker was trying to squirm out of my arms in a public place, and I said, “No, baby. You can’t get down here. I’m holding you.”

And in a very rare moment of calm, confident communication, he briefly looked me in the eyes, smiled, hugged my neck and said, “I holding you, too.”

Just keep on holding me, Walker boy, and I’ll keep holding you, too. Your life is waiting.

Let’s do this.