'It's Time to Go': The Bittersweet Summer Before My Son With Down Syndrome Starts School


Sixty minutes. One hour. A solid hour. How can something so solid be made of sand?

There was focus and intent. There were teeth grinding and spoons and buckets scooping and pouring. For 60 minutes. I nearly keeled over.

I knew he loved the sand. I mean, I’d seen a bit of it – we had bought one of those tables but it kept getting drowned by the weather event they call “U.K. Summer” (which looks more to me like bucketing down rain, but beggars can’t be choosers). That sand was played in, but not like this. Nothing remotely like this.

young boy with down syndrome plays in a sandbox
Rukai playing in his sandbox.

Sixty minutes. I may as well have been invisible. He’s never sat and paid solo attention to anything off-screen for so long, always wanting to hang out with me, clinging, looking for direction, for suggestion, for a march or a dance or a different episode of Mister Tumble on TV. And as much as I treasure my time with him, my heart has been desperately seeking evidence of his imagination brewing. Great savory chunks of that magical “pretend play” have eluded us for so long.

I imprinted that scene slap-bang onto my retinas so I could pack away that memory beside the rest.But as the time ticked away and I sat there watching him shine beneath a golden ball high above us doing the same, here in this thing they call “summer” – as sure as caterpillars eventually grow wings – he sprouted a pair of his own. They were electric, glittering and too bright to watch, but I stared anyway. Gods be damned, I stared and stared.

Those memories which say, “Yes I can…you watch me.” Yes I can. Yes I am. Yes I will.

You watch me.

Sixty precious minutes in another one of these fleeting days. These days which are shockingly short. These days which are dwindling here within that final countdown to “Big School.”

No one is ready for that around here.

My heart is in my throat and at the same time below my feet. I trample it daily. I am so afraid for him, for us – that he is not totally ready, that he may be treated badly, that he may be squashed into a corral when he should instead be set free across a wild, grassy range. That he may be marginalized and underestimated and limited. My son is going to start school next month. And here I am, elated he’s sat for an hour to play in the sand. I’m elated that I’ve seen his pretend play hit stellar heights all in the space of a few days. After a stint on a local “beach” earlier this week and this morning’s amazing bit of longer play in a makeshift sand pit, my brain said, “Holy cow, go get a better sandbox, stat – this is important. Just watch him think…”

So we went.

And we bought it.

And we set it up.

And he played for an hour.

Why have I only just figured this out?

What else have I missed?

What else will they miss?

How in the world am I going to keep all our means of communication open enough to enable identification of the passion points? To know where he wants to go…

…if he still cannot speak?

It is on this point which my heart is skewered. Every. Single. Day. But like everything else, it may be more difficult than the “norm,” but we will still find a way. Like everything else, we will once again glow with pride as he takes another magical step towards independence.

We came in from the sun to eat dinner. He ate with fervor, then there was his favorite show before him. To entertain him while I got some head space. Screen time is a necessity in this house. My life requires that offer of head space – no shame in this house! Think otherwise? You try living here.

Then the table is pushed away, and now cleared up, he takes my hand. No words – he just pulls me to the giant drawing pad he’s set on the floor. Looking in earnest at the box of pens, I pull it out and he roots around. We work the cap off together and here I draw a circle. This is maybe replay number three of the circle-drawing thing, but it hasn’t dulled the shine because we are so very much just getting started. He takes the marker off me, touches it to the paper and then he’s off.

Round and round and round. That is the circle of life. That is everything.

circles drawn by young boy with down syndrome
Rukai’s circles.

He’s done it before, but I’m blown away by the fact that I’m seeing him remember it’s something we’ve done before. I’m seeing depth of understanding and the attribution of purpose to what he is doing. And I haven’t said a damn thing. I just drew a circle.

But there is meaning. This is not scribble.

There is intellect. This is not clueless.

There is ability. This is not hopeless.

There is Rukai. This is not Down syndrome. This is Rukai. Drawing me some circles. So many suggested he wouldn’t. I want to bring him to face them with a pen, to circle them as if with shame.

Look at me! Look what I know! Look what I can do! Look who I am!

Look.

Shut up and look.

My mind, too, is racing in those circles today. Round and round.

School coming. Late milestones. So much to plan. So little time left to be “just us.” My heart is breaking, yet my heart is soaring. I don’t want time to take my little boy from me, but then again, it’s not really time taking him away – it’s him taking himself away. Ahead. Forward. Upward. Onward. I am just a conduit.

And these feelings – like all those other deep, emotional experiences I’ve had in these short four and a half years – these, too, are just like everyone else’s.

A child is born to a mother. A child grows and develops and learns and thrives. A child becomes. A child exists. A child is. There is love.

There are so many wishes I have for my son as these days dwindle and our last summer as “just us” moves further behind before it eventually drops away.

“It’s time to go.” They said it at the end of the show “In the Night Garden,” and I burst into tears.

“It’s time to go.”

So, my son, go. But please always make sure I know where you are, and remember I am always here. Even one day when I am not. I am always here.

Rukai, I hope your life is kinder than the world is.

I hope the goodness in you draws goodness to you.

I hope you know you are my world.

I hope the world knows you are.

And you are Rukai. In sand and in circles and in my heart. My son. My every wish. My pride and my morning and my night and the flame that lights up my soul. Fly, little man. You go on and soar. Dream big.

I could not – in any plane of existence – be more proud of you.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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