I’ve spoken in passing about Lytle having Down syndrome, but October is DS Awareness month, and I think this is a good opportunity to have a conversation about “normal”.
Lytle is, by some standards, not normal. She was born with a genetic condition called Trisomy 21, which means that instead of having two #21 chromosomes she has three. Down syndrome affects all kids differently, as all kids have their own unique genetic make-up that combines with their own unique home life and unique experiences. But, generally, their learning and development is delayed. Ly was sitting up by 9 months, crawling by 18 months, and walking at about 21 months. At 32 months or so she now has many signs and half-words but is still a ways off from the toddler-speak we frequently associate with a child who will be 3 in a few months.
Lytle is also, by most standards, incredibly normal. She laughs. She is full of mischief. She loves her family. She charms strangers. She brings books to me. She wants to get into everything I am doing, whether it’s “helping” me brush my teeth, answering my cell phone, going through my wallet, or ripping the page out of the library book I am reading. She managed to turn her father’s laptop screen upside down and has figured out how to play her favorite Frozen song on the computer. She resists eating vegetables. She climbs on anything she can reach. She plays with her brother. She loves bath-time.
Ly was a bit of a surprise diagnosis, she slid by two ultrasounds, three check-ins from the hospital pediatrician and two visits with her own pediatrician before he suggested we see a pediatric genetics specialist. And I won’t lie, the diagnosis was hard to take at first. Travis banned me from Google at one point. And then a few weeks later she had her heart checked (40% of DS kiddos have congenital heart problems) and the cardiologist identified a ventricular septal defect, a VSD. I nodded intelligently and made appropriate “hmmm” sounds as he showed me the ultrasound, made serious eyes and said “okay” when he said he would classify her hole as a large one, and then burst into tears when he said he wanted to schedule open-heart surgery in three weeks. We had to go into business mode and I stopped grieving for the life I thought my daughter would have and started concentrating on the life that she did have. It was a blessing. The staff were wonderful, she came out of surgery pink and nursing better and she started gaining weight. We started seeing therapists and Ly started developing. And we were a family with two kids, doing what families with two kids do.
Of course, there are hard days. The day at the library where the other 2-year old told his mom he didn’t like the way Lytle’s tongue was hanging out (DS kiddos usually have low muscle tone, including in their mouths). And my heart broke. His mom said all the right things and smiled at me, but there it was. A 2 year old who had only recently mastered object permanence could see my daughter’s difference a mile away. You can’t kick a 2 year old (well, you could, but you shouldn’t). You can’t kick the world. And thankfully most days I don’t feel the need to. Ly, as I mentioned, could charm the pants off any stranger. She makes us all laugh, she snuggles into my shoulder and melts my heart. And I have actually really enjoyed the therapy sessions, the yoga instructor in me geeks out on the physical stuff and I like watching her learn and respond to speech and occupational therapy. Just because she doesn’t learn as quickly as her brother James doesn’t mean she’s not learning, and we celebrate every milestone.
What don’t I do? I don’t read the Chicken Soup for the Soul books. I read about the neurology of sign language. I read about the cognition of mental mapping. I am inspired by people like William Stokoe who, in the 1960s when sign language was stigmatized, recognized it as a sophisticated “real” language and deaf people as intelligent communicators. I think about different types of intelligence and perception. I don’t randomly Google anymore, but I do look out for and collect inspiring stories about the first person with Down syndrome on a town council in a city in Spain. About a girl with Down syndrome in a rigorous junior lifeguard program in Southern California. About a Zumba instructor who just happens to have Down syndrome. About a photographer who has Down syndrome. And about a model with Down syndrome.
I am blessed as a mom to be watching Ly grow up in a time when there is less stigma than there has been, and more support than ever before, for people with disabilities. One of the scariest parts of Ly’s diagnosis in the first few weeks was the complete blank slate her future was for me. Growing up, kids with disabilities were in a different part of the school so I never had the chance to make friends with or develop any kind of normalcy around people who were different from me. Today we have kids with para-educators, early intervention programs, and therapists that come to daycares and preschools. Whenever I encounter a story about what someone with Down syndrome is doing, the future gets a little less blank and I know that, thanks to a lot of the advocacy and attention from the last several years, Ly’s opportunities aren’t all that different from her brother’s.
But couldn’t we always do better? This October, here is what I ask for me as a mother of a gal with Down syndrome:
(1) Support para-educators and their role in our schools. Yes their pay is an additional tax burden, but if early efforts and attention help kids with disabilities grow into passionate, engaged adults then I think we all win.
(2) See the differences, don’t try to ignore them or look away from them. We are hard-wired to see difference, I get it. That 2 year old at the library wasn’t trying to hurt me or my daughter, he was just sorting out the world to make sense of all the stimuli. Pretending that differences aren’t there does no one any favors.
(3) See the similarities. Okay, the differences catch your eye first, but then look for the similarities. There are so many more of those.
(4) Slow down. This is hard for me to do, I was nicknamed “Speedy” on my middle school volleyball team. I wrote “Slow Down” at the top of all my notecards for class presentations. My Dad still laughs thinking of my piano recitals when I would turbo through the pieces (Chopin’s minute waltz? Bring it). And now we live in a world where we can get Amazon Prime orders tomorrow, emails and Facebook updates every minute, where we can get twitter responses to debate sound bytes 15 seconds after they happen. And are we happier for it? Are we better, are we smarter, are we kinder? Perhaps we could learn a lesson or two from people who learn a bit more slowly than a lot of us.
(5) Don’t choke on the PC stuff, there’s no one right way to discuss human development. I prefer the term “delayed” rather than “disabled” and more than “differently-abled”, but I don’t mind the word “disabilities.” And not every parent will agree with me. Just be respectful in the words you choose and feel free to ask us what our preferences are. But please don’t let a fear of saying the wrong thing keep you from having a potentially great conversation with me, or with Lytle.
(6) And last, raise the kids around you (whether they are your own children, godchildren, nephews or nieces, the neighbor kid you are good friends with) with these ideas in mind. I just read an essay about raising feminist daughters (and sons!) and something at the end really struck me: “Teach her not to attach value to difference. And the reason for this is not to be fair or to be nice but merely to be human and practical. Because difference is the reality of our world. And by teaching her about difference, you are equipping her to survive in a diverse world. She must know and understand that people walk different paths in the world and that as long as those paths do no harm to others they are valid paths that she must respect….. Teach her never to universalize her own standards or experiences. Teach her that her standards are for her alone, and not for other people. This is the only necessary form of humility: that difference is normal.”
Or, as Ly’s fiercely loving, protective, and eloquent auntie put it: “It’s time to normalize this. Because it’s f$*#ing normal.”