Lexi is our 13 year old daughter.  She has Down Syndrome (Trisomy 21) and Autism.  This is a little sample of our lives, written as a letter from father to daughter.  

Lexi,

I could tell right away that you didn’t want to wake up this morning.  Usually your eyes pop open, then close for a few seconds, then open again.  Following that little eyelid exercise is one of your unique sounds that involves a raspberry+sucking noise that most of us can’t quite replicate.  It’s almost like the startup chime on a computer: distinct, promising, and soothing because you know everything’s firing up.

None of this happened today at 6:30am.  First, you opened your eyes for a brief second, didn’t look at me, didn’t make a sound, and promptly went back to sleep.  Somehow your feet are always uncovered in the mornings, and I’m never sure if you meant for this to be. My feet get hot, too, so I stick ’em out like a heatsink in the night.  I covered your feet back up because I figured they might’ve been cold.  I dunno.  Maybe you don’t like that.

A few minutes passed and I came into your room again.  By now you’re usually upright, alert, and quick with a Lexi Salutation (“HI!”), but not this morning.  Still immobile, except for deep breaths that confirmed you were still fully out.  I said “Lexi, are you still asleep?” but you didn’t answer because that’s a dumb question.  I don’t blame you.

I’ve learned from experience, dear daughter, not to rush you into wakefulness.  You don’t waste time with words in expressing your stubbornness.  We’ve learned from you that words are often unnecessary.  A look, a glance, a quick exhale from you can speak paragraphs.  One of your favorite non-verbal communication modes is intentional inactivity.  It’s not that you don’t understand what we’re asking of you — far from it.  You just don’t want to do it.  From what I hear and remember of my own childhood, most kids your age would rather sleep until 10 or so.  Waking up for the 7:30 bus is no small feat.

And yes, you do have small feet.  And again, I’m afraid they’re cold, so I re-tuck them, with not a sliver of opening from your tired eyes.

Decision time.  Lexi, you may recognize this as a pattern, and then again maybe not, but there are occasional mornings where it becomes quickly apparent that pushing you through the routine will be futile.  Often it’s because you were awake in the night, singing/babbling to yourself or playing Head, Shoulders, Knees, Toes on that Fisher-Price puppy with all the buttons and cheerful persona.  One thing we really appreciate about you is that you know what you want and what makes you happy.  You are happy to hang out in your bed for 2-3 hours in the near darkness because it’s exactly what you want, though you don’t usually turn down a cheese stick or a quick snuggle.

I asked “Were you up in the night, Lexi?” but you don’t burden me with a verbal answer.  The snoring says it all.  However, this is the last day of school before Thanksgiving break, and I know it will do you good to be there for the whole day.  I start waking you up with a long monologue of song, voices, odd noises, and the beeping of your nose.  But oh, you wouldn’t budge this morning.  You rock, Lexi, by which I mea you are an adorable little rock.

You flipped over to stretch, and you spoke some things to me with only your eyes that probably shouldn’t be translated and repeated here.  I said “let’s go potty and take a bath,” but that wasn’t on your approved list of things to do in that moment.  You registered your displeasure with a whimper and a groan, the same sound your younger brothers make when they are told it’s time to get up.

Finally you got up, but not at full LexiSpeed.  You were running a low throttle this morning which translated to every slow motion.  Your frustration was compounded by my tenacity in saying “c’mon, Lexi — we gotta get on the bus,” which again didn’t really fit your plan for the morning.  You finally acquiesced, pushed me aside, and headed toward the bathroom at full speed, as if that was your aim to begin with.  It’s weird to suddenly shift from cajoling you to being in your way, and I can’t help but wonder if that’s exactly what you’re saying to me.  I really do love your spunk.

Everything had to be your idea this morning.  I could suggest, but you would decide.  Potty?  Shower?  Bath?  The bus will be here in 15 minutes, so…

And another word came from you, bubbling up from the cauldron of tired resistance: “NO.”   That one’s hard to miss.  I switched back to cajoling as the minutes passed.  Fortunately you dry off pretty quickly, and we have a good ying/yang when it comes to getting dressed.  You still object to this whole idea, plopping down on the floor in full strike mode, but there’s no justice in chronology.  I, too, wish you could just go back to sleep, but maybe I’m projecting.

Every stair was its own triumph this morning.  I offered to carry you but, again, you objected.  You are capable and strong-willed, and the last thing you want is to surrender these, even though it would make getting up the stairs much, much easier and, to my satisfaction, much faster.  The bus is waiting, its air breaks sigh.  You, however, are never early or late.  Like Gandalf, you arrive precisely when you mean to.

Foot braces, shoes, harness, coat, hat.  I asked your brothers to bring me a brush so I could fix up your hair, which I knew you would despise.  It doesn’t take much to make you beautiful.  But oh, the frustration of beauty: you wanted to play the piano for us, but I brushed your hair and instantly shut down your artistry.  You cried.  Today’s interval was one of your favorites, the Major 7th, in which you tease your audience with the octave.  But I had to brush your hair, ruining the moment like the tyrannical savage I have become.

We opened the door and headed toward the waiting bus.  At the helm are two very patient people who greet you with the same warmth they show everyday.  I handed up your backpack while you surveyed the morning.  It was finally time for you to ascend the stairs of the bus. Only a few more steps, my dear, and then you can settle down for a nice ride to school.

I said to the driver “She’s kinda in a bad mood today… not feeling well…” and they were very understanding.

Lexi, you are surrounded by very compassionate people who want what’s best for you.  Did you know that this was one of the things that worried me most when you were born?  I wondered who would care for a kid with a special needs as they would a “normal” child?  My fears were ridiculous, like most of them are.

The time we have together in the morning is something I’d never trade for anything else.  Soon you’ll be home and bouncing, and we’ll sing the evening away.  Tomorrow begins your vacation, and I have this sneaking suspicion you’ll be awake right at 6:30, just in time to greet the open agenda of the day.  It’s okay.  You know what you want.

I love you.

Dad