Things that Keep me Up at Night

There are always a number of things that we're focusing on teaching to Cora.  Whether we're practicing new motor skill like walking up a step without holding onto a rail, or speech: practicing stringing words together to form a commonly-used sentence, or repeating her name in a little song, listening as her "Ca-ga" gradually turns into "Cooo-wa".

There are always quite a few somethings that we rotate through, watching her skills come through sometimes in small explosions, and at other times slowly and gradually and with a lot of practice.

Those of you with children with intellectual disabilities, and Down syndrome in particular know this drill. It's not just a matter of cognitive delays, but of low muscle tone that causes delays and challenges with gross and fine motor activities, and a more challenging time speaking.  A lot of the growth that Cora makes seems to come without intensive "work" at it... the strides seem to happen naturally and in their own time when she is ready to take them.  But at other times, things that seem to emerge for typically-developing children fairly effortlessly and without a lot of specific focused instruction tend to need to be explicitly taught.  I am seeing examples of this on a daily basis, as I witness Cora's baby sister Ruby move through stages with what sometimes feels like magic and remember how much effort Cora put into each new development.

But among all the things that we want to work on and help Cora master, there are always a few that stick out as urgent, critical and sometimes scary.  For me those are things like safety. 

With most kids, child-proofing is a good idea and is necessary for a period of time.  But with Cora, to me it seems so much scarier and more pressing.  Things like making sure she can't get out the front door become huge fears.  I imagine her turning both locks, opening the doors and darting into the street.  At four years old, you'd think that these concerns would lessen, and with a typically-developing kid that may be true.  But for us, it hasn't.  So we have a lock at the top of our door that she can't reach even with a chair pushed against the door.  It's a pain, because it's only installed on the inside, so if we are inside the house and don't hear Nick at the door, he can't get in without going around to the back door.  But it gives us comfort, knowing that Cora can't get out the front door without an adult assistance, and that the back door is behind child gates and door-knob covers she has yet to master.

And of course, most importantly, we reinforce, reinforce, reinforce, telling her that we only open the door and go outside with Mommy or Daddy.

Something we've been working really hard on for the past couple of years is our script when crossing the street.  "Stop.  Wait.  Look for cars.  OK, it's safe.  Hold hands and cross."  Every single time.  For the past couple of years, this process has often felt pointless.  It really didn't feel like she was getting it, and her tendency to bolt and run off caused me serious fretting and probably several new wrinkles.  But we have kept it up.  And it finally seems like it's paying off.  Now, as we approach a curb, I pause and wait for Cora to start our script.  Now she will stop and and wait and look around for cars, yelling "Car!" if she sees any approaching.  This milestone that I worried we may not reach for years seems to be coming around.  But still I worry.  Still I know that I must be hyper-vigilant, that her new-found awareness of this potential danger is likely still not enough.  I worry about preschool field trips, and whether others will know to be as cautious as we are.  I worry that as Ruby starts to walk and I have two kids going in two different directions, if I can count on Cora's training to keep her from stepping into the path of an oncoming car.  I know all parents worry about these things to some degree, but it seems different with a child with an intellectual disability.  You worry for longer.  You worry that all the training may not seem relevant if the situation is slightly askew, as situations in real life tend to be.  You worry when you read about children much older than Cora who still struggle, and those who have gotten seriously hurt and worse.  You wonder as you see school-aged kids running around with a certain level of autonomy whether you'll be able to relax enough to let your own child explore and play in the same way.

It's hard.  It's scary.  It keeps me up nights and has me constantly brainstorming ways to help keep her safe, and ways to help teach her how to keep herself safe.  Because as many safeguards as I try to create, ultimately I am teaching her how to do it for herself.  And I hope that all my teaching and all my repetition will pay off.