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How Inclusive Education for Our Son With Down Syndrome Is Healing Us

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In much the same way as frost sticks to the windshield of your car in the winter, negativity can find a way to latch on to you, whether you like it or not, if you spend an inordinate amount of time surrounded by it. In the first three years of our son Rukai’s life – hell, preceding the first three, go back to “in utero” – down to all the medical guesswork and gleeful tick-boxing we were dealing with, there was little which didn’t fill my heart with sorrow, didn’t strangle my thoughts with worry. That fear, that negativity was like an overgrown ivy, and as such it led to poor health for us as his parents. A poor mental state, even poorer vision and all too often a lack of perspective.

It’s awfully hard to use peripheral vision from within a chasm.

Whereas some parts of society would have you believe that it is our child, born with Down syndrome, who was doing the suffering across those years, it was actually us, as his parents, in anguish – not from Rukai, he was a joy – but from having to fend off society and bad medicine perpetually marginalizing our beloved son. From all those conversations centered on “what he can’t do,” where we’d consistently be responding “the hell he can’t, shut up and watch him.”

It’s exhausting to have to fight all the time. And horrifying that at some point you actually tip over and get used to the challenge. Like a broken record, you find a “party line” that explains why statistics don’t define a life. We landed on something like:

A story not yet written cannot be told – particularly one which you do not own.

It was all so bleak. We were all so fearful. And I was entirely too angry. But that was then and this is now.

Much the same as a blast of garden hose clears out the muddle between paving slabs, in the winter of 2014 we enrolled Rukai into a nursery aptly named Sunshine. And these people could not have been more polar opposite to those eternally dark-minded, interfering medical professionals. Not only did they listen to me, but they listened to Rukai.

They watched what he could do, then they said “OK, what next? How do we go onward and upward from here?” And so too did Rukai, onward, upward. No labels. No negativity, just progress.

We went from medicine to education. From darkness to light. From fear to joy. From negative to positive.

And there, you have it:

Medicine searches for problems and seeks to correct a person’s disability. Education searches for potential and seeks to unlock a person’s possibility. I know where I want to spend my time.

And that Sunshine? Well, it was the very bridge from the one to the other. And just like that, I am not so angry now. Because now, we are here. Always moving. Relentless forward progress. Slowly but surely we arrived.

Maybe I’m too tired to be so angry. World-weary, it was recently said. Physically exhausted. Mentally used up. I’m looking at the calendar ticking off the final days in this year of amazing physical challenges that included hundreds of training miles run and two marathons. I’ve no idea where the mental tenacity required to get through one of those races came from, let alone two.

Then again, maybe I do…

When Rukai started primary school in September I knew things would be good in “big school,” but I had no idea just how good. A head teacher with practical experience of Down’s syndrome. A ridiculously inclusive school with the most amazing staff. And full time one-to-one support has meant Rukai has enough guidance to help him engage with the other children while progressing in his learning at his own pace. His support person knows Makaton sign language is an amazing blessing. Knowing she “gets” him is making me cry as I type this. I could not have possibly asked for more.

Yet, still I got more.

Earlier this week, I was able to watch him in his first school Nativity play, the incredibly sweet “Born in a Barn.” He stood (and sat and stood and sat) with all his peers, participating in his currently unspoken way, yet bursting with communication via Makaton signing. And he signs like a boss.

I wept to see him doing so much more than I was led to believe he would be able, from way back in that frozen hospital room as I tightened my arms around him to protect him from those equally cold, white-coated bringers of misery who stood before us. I expect to see him do amazing things now, but that doesn’t make it less moving; probably quite the opposite. Every milestone is Everest.

That is my son up there.

My son. My sunshine. My Rukai, in his school play. Included completely.

And the play ended. And they all stood. And in unison, they began to sing “We Wish You A Merry Christmas.” But they weren’t just singing… they were signing. They were all signing. Every last one.

By then, this hard, old, world-weary mom was weeping herself dry.

You see, I also cry when I’m angry. But I’m not so angry anymore.

It’s a long way on a donkey.

“It’s a long way on a donkey

It’s a long way to go

It’s a long way on a donkey

It’s a long and winding road.”

– From “Born in a Barn”

Follow this journey on Down in Front Please.

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Originally published: December 19, 2016
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