by DSL Mama Jennie Cooper
When I found out that my tenth and last child would mostly likely have Down syndrome, I took what is probably an extremely unusual approach in this day and age: I didn’t google a thing. I intentionally chose to enjoy this last pregnancy instead of worrying. Anyway, I figured a baby is a baby, and all babies need the same things; I’d deal with the extra stuff when it presented itself. So I embarked on this particular journey completely clueless, with no preconceived ideas of what she would or wouldn’t be able to do, or how our lives would change, or what we’d be facing in the future. There’s something to be said for preparing yourself, but I don’t regret my intentional ignorance. In those difficult early months, I just did the next thing that needed doing without worrying about the big picture.
We started working with therapists from First Steps and Down Syndrome of Louisville when Florence was four months old. At that time, she was a snuggly little lump of mush who couldn’t even hold her head up! That was my only goal for her first six months: I wanted her to be able to hold her head up well enough that I could carry her on my hip. Well, little Miss Florence has just celebrated her first birthday, and not only can she hold her head up and ride comfortably on my hip, she can:
combat crawl across a room • sit without support and use both hands to play with a toy • push up on hands and knees and rock back and forth • navigate around obstacles • roll across the house • pick up small items she finds and put them in her mouth • intentionally release items into a hand or container • initiate games like peekaboo • take turns rolling a ball or blowing raspberries • activate cause-and-effect toys • catch a toy floating by in the tub • eat purées, small foods like rice or minced chicken, and easy-to-sog crackers or cookies • express joy by clapping, squealing and dancing • wave hello or goodbye • vocalize several consonant sounds and blends • strongly prefer family members to outsiders • and communicate her needs and desires.
Compared to a typically developing child, she’s way behind – she would be crawling for certain, and probably walking, saying a few words, drinking out of a sippy cup, and more – but we don’t compare her to typically developing children! We look at where she was, what she’s accomplished, and how hard she’s willing to work toward future goals. By those measures, she’s knocking it out of the park!
Babies with Down syndrome face some unique obstacles in learning things typically developing babies figure out almost automatically. It’s not a failure on the part of the baby; she’s just made differently and we have to help her learn how to work around or overcome her weaknesses. As a parent, I do this to some degree for all of my children; as a parent of a child with special needs, it’s nearly constant! But Florence loves to try new things and she trusts that we’ve got her back, so when we introduce something new, she enjoys the challenge. Right now, she’s working on:
moving into and out of a sitting position on her own • standing up from sitting on a stool (bearing weight on her legs) • playing while supported on her knees • manipulating different switches on a pop up toy • putting rings on a peg • remembering that things still exist when she can’t see them • identifying family members by name • anticipating what comes next • and drinking out of a straw.
These are humble lists, and well-meaning acquaintances try to comfort me by telling me how long their typically developing babies took to achieve certain milestones, but I don’t need comforting. I’m crazy proud of what she can do! But it’s also crucial to remember that not only can’t we compare her to a typical child, we can’t even compare her to any other baby-with-Down-syndrome. Each one of these children has such a unique combination of health issues, family situations and therapy access, and even that extra chromosome might have greater or lesser effects in different developmental areas. It’s nice to look around and see what’s possible and to cheer other families on, but there’s not a single one of these babies who is “behind”. They’re all just on their own unique trajectory.
As for Florence, long term, relatively speaking, we look to have her walking around the time she turns two. Maybe she’ll beat that, maybe she’ll take longer, but it doesn’t matter. She makes steady progress, and we’ll all learn a lot of other things along the way. Just the same, though, I’m thankful she’s on the petite side; if I have to carry her around forever, it’s nice that she’s travel size!