I am usually that proud parent who shares things about Down Syndrome awareness, medical alert bracelets, and inspirational stories on social media. I never miss wearing blue and yellow on 3-21 (World Down Syndrome Day) and share facts to raise awareness all through October . I even made a wreath last year.
Some days, though, I am wistful about that extra chromosome. I don’t know if it’s so much for me as for him..I think not having Ethan in Sunday School and a developmental center until recently has made me sheltered as well-sheltered from the painful awareness of just how far behind Ethan is becoming in relation to his peers. Ethan is progressing very well; but regardless of his progression, all the other kids are moving onward very quickly and without hours of therapies every single week and almost every day. The sad thing (sometimes) to me is that it;s not just that he is being passed up by kids who are 3 years old. Kids one to two years younger can already talk so much more clearly. For some reason (well I actually know several reasons ) being delayed in speech bothers me so much more than than other things. It is sad that Ethan has worked hard on jumping with both feet off the ground for over a year, not to mention running-yet other kids barely shovel in their 1-year-old birthday cake and they just up and do it. Their bodies can just execute it so much easier than Ethan’s. While sad, that is easier for me accept than speech delays.
Why so sad about speech? I think it’s because when you are left out of communicate-that is the biggest barrier in connecting with others. How often will not being able to run, jump, or ride a bike affect connecting to others? Well, a lot actually in early childhood. Still, speech is the main thing in my mind that connects people to one another. This ever-widening gap between Ethan’s abilities and others makes me so sad and concerned for his connection to others. I hopeEthan isn’t lost in the shuffle-that he isn’t hurried along, spoken for, or forgotten because he quietly sits (or not so quietly-ha) talking in shorter phrases, signing, needing more time and broken-down directions to follow.
Here are some things I never considered-nor did you probably-on how important his interventions are. It’s what he works so hard at and has to leave family time or class time for in order to do what comes naturally to typical kids for the most part.
3) Ride a tricycle or bike
4) Walk without falling
5) Walk longer distances without tiring
6) Walk down a step without falling (I have to be very watchful. He has almost face-planted in concrete steps. Yes I know that could happen with a typical child, but it is more likely to happen for a kid like Ethan due to his low muscle tone, etc. If you just dismiss us parents of kids like Ethan by saying “kids fall”, it only makes us feel more alone.
I am not wanting pity or to make people feel weird..I really don’t know what I hope to accomplish. It’s just straight from my heart to my pen (and now computer. I figured I would blog it, but I just needed that good old pen to paper therapy!) I guess maybe we won’t always be expected to be chipper or just act like the differences aren’t there. Please don’t expect that. You may hear about our early acceptance of how Ethan was born. We love him like crazy. We sometimes say we wouldn’t change him-HIM Well what does that mean? Of course we want him. I’ve grown to understand what some veteran parents of kids with Down Syndrome mean when they say they wish their child didn’t have to have an extra chromosome. Half of you Down Syndrome parents are mad now,maybe, or shocked. I’m not going to tell someone how he or she should feel. These are just times that the pain is more present, just grief over other things-it doesn’t go away. When someone mistakes your kid for one much younger because of ability and stature-it’s there. When I’m told it could harm my child irreparably to do tackle football or gymnastics-and we have already cut out those and trampolines as options at the young age of 3, it’s there. When my kid has hardly uttered his name in a recognizable way, yet kids 2 or more years younger who barely know him roll his name from their tongues effortlessly-the frustration and pain are there. It’s shocking. We work so hard-Mainly HE does. Ethan and his therapists and us. And it is such a punch to the gut when I happen upon some kids 3 or younger who are doing not just the things he’s learned in 2 years, but more. Much more. And I know he isn’t the sum of his abilities. I know he is still precious and smart. You don’t have to tell me-the thing about a child with delays is as a parent or other close adults is that we see patterns, varied signs, or unclearly utterances, and we see our child letting us know what he knows about the world.