A mom’s reflection on the pride and pain of high school graduation for her child with special needs
When she tries on her royal-purple cap and gown, tears rise as I hold up the camera to take a picture.
“Mom,” she protests, while striking a pose. “Why do you have to do this now? You can take pictures at graduation.”
I can, I think, but what if I can’t? What if it’s too hard?
High school graduation is the gold ring at the end of a long carousel ride. It’s the public celebration for proud parents and for our kids. It’s the rite of passage that declares we are good parents and we turned out successful kids.
In the spring, posts from moms whose seniors are choosing colleges, applying for internships, or packing for a gap year in New Zealand fill my social media feeds. My own girl talks about her “friends” who are going to Harvard, to Massachusetts Institute of Technology (MIT), to this university or that, with the air of a soldier who just heard the war was won.
Graduating from high school is important, and it is reason to celebrate. It’s an accomplishment for our children—and for us.
And then there is this: at my girl’s high school, instead of honoring the class valedictorian, all the International Baccalaureate (IB) kids wore gold tassels around their necks. Branded as “the special kids,” “the smart ones,” “the hardest workers,” they did work incredibly hard to reach this milestone.
I wanted to stand up and yell, “Damn, my girl had to work so much harder than any of you just to be in the same room. That girl, the one with no gold tassel around her neck, couldn’t speak until she was four and couldn’t be understood until much later. And there she was, sitting in your senior literature class, writing about her grandparents to the absolute limit of her potential. Where is her gold tassel?”
[Deep breath here] Can you tell this is hard?
While you are gathering twinkly lights and towel sets for your girl to take to college and begin her future, my girl is choosing a new paint color for her bedroom in my house. You get to decorate a dorm room. I get to roll paint on walls I have already painted several times so my girl’s room looks and feels like that of a young adult’s. She isn’t going anywhere.
Graduation brings up a lot of emotions for us moms. Yes, I want her to be recognized for her effort. Yes, I want her to be recognized for how far she has come. Yes, I want her to be honored for the kind, thoughtful friend I know she is, even if others don’t.
But deep down under all that is something else, something that parents of kids who don’t have disabilities don’t have to face. My girl can’t go to Harvard or MIT or even to a local community college. Her disabilities prevent her from having the academic skills to reach that goal. She will, in many ways, remain a high school–level adult.
Deep down sits my fear, not hers, about her future. Will she ever be able to have anything other than a minimum-wage job? Will she ever be able to support herself? Will she ever be truly independent from me? Will anyone love her as fully as I do?
It’s hard to tell you this. I want to smile and hug you and congratulate you and your daughters on your well-deserved accomplishments. I want to feel excited about their college journeys and their dreams to be microbiologists and immigration lawyers. I am happy for you, and I want you to know that you can tell me all about it. And I know you will be supportive of my girl’s next chapter as well. But know, too, that I am carrying something you are not, that my worry for the future is heavier than yours. It contains layers of grief, and it carries eons of worry.
At this graduation and the many more you will likely attend, remember my girl and me. Remember that we are here, too, running though not in the same race. Take some time to think beyond the bright smiles and greeting-card congratulations as we file out of the auditorium. Take some time to think about our journey to a stage that she proudly walks across.
Think of us when you are complaining about your empty nest and the grief you feel as your children fledge and grow. It is a big adjustment, but some of us will never have that experience. I expect my daughter eventually will live somewhere else with supports to do so, but I will always have a child to care for. I will never have an empty nest. Up till the day I die I will be wondering if she got to her swim class or had something to eat beforehand, even when she is 55.
I held my mother’s hand when she passed, was there for my father’s last breath. I know that they worried about their children, like most parents do, but they died knowing their four kids were OK.
I want that to be true for me. I want to know that my girl is loved, supported, and has the skills to figure things out. I want that more than you can know.
Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.
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