Parents spend an inordinate amount of time comparing their kids to everyone else’s. I could claim that having one very smart, advanced child and one child with Down syndrome has made me immune from such nonsense…
…But I’d be lying through my teeth. However, I do find it a little easier to be philosophical, simply because my kids don’t even inhabit the same developmental plane.
What do I mean by that? Pick up your closest parenting manual—I know you’ve all got at least one—you know, the one that tells you when the baby should hold his head up, roll over, or say his first word. For every skill, there is an age range. Walking, if I remember right, averages from 9 to 15 months. That’s a pretty wide range. But for kids with Down syndrome, they don’t even make a list. (At least, I’ve never found one. If someone has one, I’d be interested to see it.) The reason is that the range of skill acquisition is so wide that listing it really wouldn’t help anyone at all.
When Julianna was born, I didn’t know what to expect. I kept asking for parameters I could use to structure my expectations: what she could learn, what kind of adult skills she could reasonably master, and so on. But I learned that there’s no way to predict these things—they are a mystery that will be revealed one day at a time, just like any other child. Just as IQ, talents and aptitudes vary among “typically-developing children,” so do they vary among children with Trisomy 21. Only exponentially more so.
For the most part, I’ve learned to follow Julianna, not to get hung up on the fact that it takes her 10 months to progress from sitting unsupported to getting into sitting, and then to crawling. But one thing has surprised me.
I figured that delay would be relatively flat across the board. But that’s not the case at all. At two years old, Julianna is not walking; she’s not able to use a fork or spoon independently; she’s pretty good at sorting circles and squares, but she’s got a long way to go. She has zero vocal words, is only just now babbling consistently with consonants other than “d,” and she has virtually no vowel sounds except variations on “aaaah.” These constitute quite significant delays. I’ll take a halfhearted stab at classifying her developmental age as, oh, let’s call it 15 months.
Except… She knows the bedtime routine, and shows it by gulping desperately as she signs “book!” She recognizes her grandparents, even after a long absence, and hurls herself into their arms. She’s a manipulator, a beggar; she throws herself on the floor and wails when she doesn’t get her way; she knows exactly how to get her brother in trouble, and frequently does. She’s stubborn and uncooperative, and not because she doesn’t understand—she does. She’s just independent.
In other words: in mental development, she’s two…even though her body is 9-12 months younger. I just didn’t expect that.
I share this in my ongoing attempt to help new parents of children with DS to get a sense of what to expect, and also to try to promote better understanding among the “typically-developing” population. I truly believe that the more we reach out to those who have no contact with the developmentally disabled, the more we can tear down the walls separating us. It’s my dream that someday the 80-90% abortion rate will be a thing of the past…that posts like this one will never be seen again… When everyone understands better, the fear that drives that statistic will lose its stranglehold.
May the truth set us free.