My daughter, Grace, is almost 5 and is on the autism spectrum. She is nonverbal but is fierce and friendly and much braver than her father.
She has had more doctors than years. They have included a neurologist, a neurogeneticist, a nephrologist, a radiologist, a pediatric dentist capable of using necessary sedation to fill ordinary cavities and a kind, competent and endlessly patient pediatrician. She has had dedicated teachers starting from 15 months who have worked to help her during these critical years when the brain is still getting itself organized and neural connections can be rerouted.
Grace has a mother who works past tired to educate herself on the best way forward for all of us. She has a 6-year-old brother, Henry, who tries to connect with her in every way possible, whether it be tickling her or prodding her to play with her favorite toys. She has family and friends who give a piece of themselves to her in ways that are great and small.
She also has a dad who nearly drowned in denial.
There was this picture, you see. Somehow, in my mind, my girl would grow up to be Veronica Mars, all sass and courage, the smartest girl in any room she happened to be in.
In those first few months, after it became clear that she was retreating from the world, I kept asking what was possible for her. Would she go to college one day? Would she ever talk? Nobody had satisfactory answers.
But then, how could they? Those questions weren’t really about my daughter. They were about me. My loss. My fear. My pain. My beautiful girl needed me and I was lost.
So, day by day, I shuffled through her life. I tickled her belly and sat her on my lap. I gave her kisses and hugs and got her dressed for school and told the whole world that she was my girl and that she was fierce and friendly and brave. But I made no effort to learn the basics of applied behavioral analysis, which is the foundation of learning for children on the spectrum. And I left it to her exhausted mother to keep a vigilant eye on the services she received.
I was like Herman Melville’s character Bartleby — always there but never present.
Martin Luther King Jr. once said, “We must accept finite disappointment but never lose infinite hope.” The truth is my daughter may never talk. This is the reality, and marshaling the strength to find something true and beautiful on the other side of it is a daily battle. These days, mostly I win.
I will be sitting in church and feel her tiny hand on my knee and soak in the profound comfort she takes from my presence. Or I will open the trampoline and lift her on to that magic carpet so she can bounce joy into both our lives. Or I will float in the great, grand music of her laughter. At these times, my girl is happy and that is all any parent wants.
But there are other days, too. As a family we are always searching for activities that will interest her and my son and always wondering if we will be welcome when we find them.
In some places the answer is no. Not long ago we tried to sign her up for swimming lessons but were told children with special needs should either join a special class on Wednesday nights — not exactly a family-friendly option for working parents — or hire a private instructor. We moved on and searched for somewhere more welcoming.
Each day there are struggles great and small to confront. A vacation sounds nice but requires travel and ripping her from her routine. A night out sounds nice but requires a baby sitter and they are in short supply because you need someone you trust and who is capable of caring for a child who can’t easily communicate. The world is a perilous place when your child can’t talk to you and tell you what is wrong. (Just imagine trying to get a 4-year-old to take cold medicine without being able to explain to her why she needs to take it.)
And always there is the hulking cloud of the future threatening to crowd out the sunshine of the present. Someday, I will die. My wife will, too. What then? Will she understand? Will someone be there to take care of her? How much money must we make now to secure for her a future that is not full of torment?
All difficult questions. But in them there is some measure of progress. All of them are questions about her.
NOTE: This column originally appeared in the April 24, 2016 edition of the Hartford Courant. It can be found online at http://www.courant.com/opinion/insight/hc-op-insight-egan-my-daughters-autiism-0424-20160422-story.html.