Sunday, October 25, 2009

Down Syndrome Awareness -- 31 for 21 -- A Day Behind; Delays Ahead!

Here's my post for yesterday. It was delayed! No particular reason except I didn't do it... yesterday. But, here it is today.

I purposely didn't post for Down Syndrome Awareness yesterday to make THIS point. Delays are just delays. They are not the end of the world. Nor the end of my child's development. It's just a delay. Whatever the goal was, it'll come in it's own time. Brian and Michael -- who happen to be blessed with that extra 21st chromosome (aka Down syndrome) -- will reach those goals when they are ready. And, yes, there may be things I can do to help them get ready. To help them reach those goals a bit sooner... maybe.

I equate this to being stuck in a traffic jam. (You can tell I'm from NY right?) I can wait it out, creeping along, mile by mile... making my slow progress. I can detour or try another route which may or may not be better. I can distract myself with music or another activity (hands-free phone, pit-stop, etc.). I can be patient or impatient. Whatever I do, I am still delayed. Stuck here in traffic.

Often, when I encounter a delay, I choose to detour. For me, any progress or movement in the general direction I want to go is good... preferable to sitting still and doing nothing. That's my personality. One of my NYC commuting rules with my sister was to keep moving. When the LIRR let us off underground at Penn[sylvania] Station in Manhattan each morning, to get out of those deep, dark and sometimes smelly train tunnels and up to ground level we kept moving. If we reached one staircase on the platform that was overcrowded, we'd keep moving to the next, or the next, or the next until we found one that was moving. That was key for us. For me. (There's my "Just keep swimming" mantra again!)

This rule holds true with my boys' development too. Though there are delays (you've probably already heard my 'no limitations' speech), we just keep moving it along. When we hit a delay, we change focus, try something new, go to the next proverbial staircase, keep moving toward the goal. Try a different goal and come back to this one later. Again, it's my personality that dictates my methodology. Could I wait in line until they reach the goal? Sure. That's just generally not MY way.

The thing is, we need to keep in mind that a delay is JUST a delay! It doesn't mean you can't or won't get to the goal. It just might take a little longer. Children with Down syndrome generally develop along the same lines as children without Down syndrome. They just do it their own way. Maybe they're waiting patiently in line. Maybe they're detouring, taking their own route, or distracting themselves with other enjoyable stuff -- like life -- or other important development. Maybe they're just taking their own time. Key words: Their OWN time. Not mine. Not yours. But theirs! Either way, it's just a delay!


  1. I dunno, I've always thought "delayed" was an inaccurate term. "Delay" seems to imply that they will always "catch up". After all, Kayla is five and nonverbal. It's likely that she'll never talk, more due to her autism than Down syndrome. So she's not "delayed" in her language, it may never come, no matter how much we detour. And that's OK!

  2. Great post, Maggie. I am the director and professor of the special ed grad program at Seattle University. Your story aligns completely with my teaching! I like the analogy of traffic jams. I, always moving and thinking about the next (twenty) things I need to do, am trying a new strategy when "delayed" in traffic or lines or in a telephone recording loop with lots of wait time. I am trying to use the delays as a trigger to breathe, be in the moment and appreciate a small stall. I absolutely support your comments about moving forward and finding other ways. I also know how fast our children grow up and away even when moving forward slowly. Maybe a "delay" or as Dari wrote, even a stop is a nudge to just "be" and trust the universe. I know it sounds very new-age(y) but there were moments in my and my family's own crisis that I could only just be in the moment. No detours allowed. I look forward to reading your posts!