By: Peter Sterpe
We #ExtraLuckyDads get it that moms are the big, big deal in the lives of children. As a dad, I offered to share our story, though, less to give the “dad perspective” and more to give the “been doing this a long time” perspective. And my dad voice will undoubtedly come through.
My daughter is Emeline, now 25 years old. Em has cerebral palsy (CP), which we soon learned doesn’t necessarily tell you anything. We used to care a lot about why Emeline was born the way she was. We wanted something to … target. Something to support, to at least write a check for. If we could help “them,” whoever they were that were working on this problem, that felt like helping Emeline.
What we found is that CP is a category, sort of like “headache.” There can be many causes: genetics, metabolism, brain injury. Or you can just have something wrong between brain and muscle that makes movement hard. That’s the case for Emeline — there is no known cause for her condition. She’s effectively quadriplegic and cannot speak, and who knows why. We stopped asking a long time ago, because nobody is “working on it.” There is no research into “Wow, we just don’t know.”
That decision has made us, and our daughter, very happy.
I really admire the families who have the fight in them — to support research into a cure for their child’s condition or disease, to advocate for disability awareness, to gain better access for *their* kids to everything that the typically abled get to enjoy. I give you a standing ovation for having that fire in you. This whole website is about having that fire in you, and the happy life Emeline enjoys is largely due to your efforts.
We went a different way. And like so much in life, we sort of fell into it. Lucky for Emeline, her cognition is normal. It’s unusual with CP to have such severe motor problems without cognition problems, but there you go. Em went through public school all the way to a high school diploma. During her extra high school years (she was able to stay in the school system until age 22), she even passed some classes in community college. (She now makes a “gag, barf” face about college, but she had to try it to know it isn’t for her!)
As “going through school like all the other kids” was unfolding, we gradually went from “why?” to “how?” How can we help Emeline experience a life as close as possible to the lives of the kids she sees every day?
For us, the “how” was very practical. Her mother and I are task-oriented problem solvers. Not exactly “Type A;” more like B+. And navigating the world in a wheelchair when you can’t speak and can barely move is nothing if it isn’t an endless series of problems. So we targeted the problems.
How can she do this homework assignment? You have to draw a line from the word in column 1 to its definition in column 2, and she can’t draw the line. How can she communicate when she can’t talk? How can she work a computer when she can’t use her hands? How can she get through a school day when she needs nearly constant support for everything: eating, drinking, toileting, wiping her nose, all of it?
We found solutions for all of these challenges — and plenty of others. (If you want pointers, I’m happy to share!) Some solutions were … meh. Others verged on brilliant. All of them made Emeline happy. Maybe the best involved a plastic rod riveted to the brim of a baseball cap.
She could move her head to move the rod like a pointer. We printed letters and phrases on paper (PowerPoint to the rescue for laying it out, Staples for laminating it), and we’d hold it up. Emeline used the hat pointer to spell what she wanted to say. This has worked for twenty years. (Note: adults generally stink at following the spelling; kids rock at it.)
These workarounds got Emeline into the mix, mostly doing what everyone else did. She felt — and still feels — like a person. Not a disabled person; just a person. We used to send her to an occasional Saturday morning program at a facility that serves the disabled. The kids in the program almost all had cognitive challenges; most could walk and talk. Emeline once came home and spelled, with her hat pointer and laminated letter board, “I was the only normal one there.” This is a non-speaking quadriplegic kid sitting in a wheelchair moving her head to point at letters — and you won’t convince her that she isn’t one of the normal ones.
The joy of Emeline is watching her be happy. I don’t mean laughing at something funny — and she laughs more before Noon than most of us laugh in a week. I mean just being a happy person. You know those well-adjusted happy people that kind of annoy you because they like life more than you do, and you know you should like life more than you do, but you haven’t quite solved the happiness equation and dang if those other people have figured it out? She’s one of those.
Emeline’s happiness is infectious, too. And this helps other people. If you have a disabled child who might some day attend public school, you will one day read editorials in the local paper from retirees whose kids have already gone through the schools. They will label the aides who help the disabled kids through their school day as “babysitters,” and they will be sick and tired of having their taxes pay for those babysitters, thank you very much.
That short-sighted selfishness propelled me to speak at a school committee meeting once. I told them that the so-called babysitters are enablers; they help disabled kids get the “free and appropriate public education” that the law guarantees. And those disabled kids are not just a burden on the system — they do have something to contribute. In kindergarten one day, Emeline motioned with her head for a distraught classmate to come over. The girl sat near Emeline and calmed down quickly. Empathy emanates, right? You know when you’re in the presence of person who is somehow healing and calming? Of course you do. A school board member shed a tear over this one, and funding for the aides was not cut.
Emeline now works as an aide in that very elementary school she attended. Is it all great? Well, of course not. Her time is mostly uncompensated; she has that dreaded “unpaid internship” that college kids fear settling for. But she says that the kids love her, and she loves her job a lot. So much so that she once said, “I hate vacation weeks.” How’s that for a work ethic?
I don’t mean to offer this as an “if you can dream it, you can do it” story. Practically nothing we dreamed for Emeline has come to pass. When we learned she had CP, someone gave us a binder of “resources.” One page was a zillionth-generation photocopy we could barely read. It told a story that likened expecting a baby to eagerly anticipating a trip to Italy. You had seen everyone else’s pictures of THEIR trips to Italy, and you couldn’t wait for that wonderful experience. But when you got off the plane, you found yourself in Holland.
Wait, you say, this isn’t Italy. This isn’t the fabulous trip everyone else has been raving about. Why not?
The story goes on to talk about, basically, acceptance. Holland has beautiful tulips and windmills and delicious cheeses, and there you are, so you may as well find things to like about it because you’re not going to Italy.
Oh, how I used to hate that story.
But time passes, you tackle challenges, you make that happy life (mostly) for your child, and you accept. If you’re not ready to accept, so be it. My path isn’t your path. But if something inside you is tired of struggling and resisting, know that this is okay, and that going with the flow can turn out just f
ine.