Tag Archives: Down syndrome

Of Down Syndrome, Anne of Green Gables, and Van

3 May

“‘Dear old world,’ she murmured, ‘you are very lovely, and I am glad to be alive in you.’”
~ L.M. Montgomery

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A Celebration of Katharine and Geriatric Pregnancy

13 Oct

img-sarah-the-matriarch

“Now they were both old, and far advanced in years, and it had ceased to be with Sara after the manner of women” (Gn 11.18).

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Nick’s First Two-Pointer (with assists)

14 Dec

I need help, ladies and gentlemens
I need someone to stand beside me
I need someone to set a pick for me
at the free-throw line of life
~ Cheech & Chong, Basketball Jones

“We want Nick to play on the 5th-grade team this year.”

Todd Mowers was speaking with my wife, Nancy, about our son Nicholas. Todd knew well that Nick has Down syndrome and would have difficulties on the court that the other boys wouldn’t face. Still, he was adamant – along with his high-school son, Connor, who would be doing the actual coaching for the team and who went his dad one better. “I want Nicky on the team, and I’ll start him every game,” Connor insisted.

Now, you have to understand that our Nicky is an athlete and a fiery competitor. In fact, he wants to play football for Notre Dame – and I’m not about to discourage him. On the other hand, because of his Down’s related underdevelopment and delays, we know Nick’s unlikely to make the cut. Still, nothing stops him from keeping up on the game, practicing outside with his brother Crispin, and competing on the electronic field thanks to EA Sports. Nick’s eager to get out there and mix it up.

Consequently, I’m embarrassed to say that it never occurred to me – or Nick – that he might play basketball for his school. He prefers football, it’s true, but he does enjoy shooting baskets in the backyard, and Crispin has drilled him in the basics. Even so, basketball sign-ups weren’t even on our radar when the Mowers men approached us, and so I’m grateful that they could see Nick’s potential and the contributions he’d make – and then acted on what they saw.

And that brings us a recent Saturday and Nick’s first two-pointer in competition – an event worth celebrating for sure! Here it is, as recorded by our friend and fellow Nick-fan, Chris Quinn:

There are lots of videos showing kids with special needs making baskets and touchdowns and goals – and they’re so inspiring! I think Nick’s triumph is similarly inspiring, and Chris’s rough-cut video highlights some key features that all such moving athletic accomplishments have in common.

  1. The coaches: In Nick’s video, you’ll see Todd sitting on the bench, and his son, Connor, standing near the officials’ table. Needless to say, this whole event wouldn’t have taken place without their initiative and mentoring, and it’s to their credit that they had a vision for their coaching well beyond merely winning games. Their cheers are totally for Nick, no question. Two more points was just a bonus. It’s also noteworthy – and not so obvious on the replay – that the coach from the opposing team cheered as well. Apparently, just before Nick’s basket, Todd briefly consulted with that other coach and pointed to my son. In other words, it was a conspiracy – everybody was in on it, both sides! It’s edifying to see that a broader vision of coaching is not a rare commodity after all.
  1. The players: The coaches’ vision for Nick and the game was contagious it seems, and the players on both sides picked up on it. Note in the video how they all kept playing, but at a modified pace to allow Nick to set up his shot. Special recognition goes here to Keegan Quinn, Chris’s son and Nick’s good buddy. Do you see how Keegan not only tosses Nick the ball, but also directs him to center court? And then – *swish!* – it’s in! Keegan is first congratulate his pal, slapping him on the back as they run together to take up defensive positions. Even then, he’s reaching out to Nick, reminding him of his assignment and offering encouragement.
  1. The referee: The coaches? The players? Even from both sides? I get that. There’s something about a kid like Nick that elicits goodness from people, and, frankly, what happened on the court that day is what you’d expect in a Catholic sports league – at least at the 5th-grade level anyway. But the ref, too? You’ll see in the video where he gives Nicky a low five at the other boys townend of the court. Technically, that has to be some kind of violation of referee objectivity and decorum, right? Not here, though – and there’s more. I was told after the game that even the ref was in on the set-up for Nick’s shot – that it was even kind of his idea. I didn’t have a chance to thank him, but I’m guessing that the sight of Nick’s beaming face and fist pumps after the basket were plenty gratifying in themselves.

Coach Connor and his dad would deny that they had any extravagant motives in including Nicky on the team – that it was some kind of charitable exercise or good will gesture. Instead, it’s clear that his welcome participation – to the degree that he’s able – is in continuity with the solidarity that Nick has enjoyed from his first days at our parish school, which is itself in continuity with the spirit of the Gospel. “We are able to live this journey not only because of others, but together with others,” Pope Francis has reminded us. “In the Church there is no ‘do it yourself,’ there are no ‘free agents.’” Put another way, assists are the norm – on court and off.

Go team!
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Of Catholic Schools, Down Syndrome, and Hospitality

3 Apr

The best portion of a good man’s life are his
little, nameless, unremembered acts of kindness and of love.
~ William Wordsworth

I sat across the table from Miss Retseck, the principal of our parish grade school. It was spring, and we were discussing how I’d manage tuition for my kids the following fall. “You’ll have four Beckers on your hands,” I jested. And then, in passing, I added, “Of chomeourse, if Nicky wasn’t going to the public school, you’d have five.”

“The public school?” Miss Retseck shot back. “Why?”

“Well,” I faltered, “with Nick’s Down syndrome and all, we figured the public school was the best option – you know, for therapy and services.”

Miss Retseck’s eyes narrowed; her reply, solemn. “Why don’t you let us try?”

It was an epiphany. “Alright,” I said after a brief pause. “Sure. Why not?”

Miss Retseck’s sober determination to accommodate Nicky’s special needs was a watershed moment in his life and the life of our family. It cemented our vision for keeping all our children together in Catholic schools as long as we could, and it reinforced our desire to focus on Nicholas’ strengths rather than his perceived deficits.

There’s one more thing that Miss Retseck’s proposition subtly manifested that day: Our school, like our parish, was in the business of welcoming. Parish schools are perpetually strapped, and so it’s always a struggle to provide what better funded institutions take for granted. Nonetheless, Miss Retseck made it perfectly plain to me that Nick could belong at St. Matt’s School and that she’d be committed to his welfare.

Today Nicky is in fourth grade and thriving. With the help of his teachers and Miss Retseck’s successor, Mrs. Clark, we’ve cobbled together a mesh of support services, both in school and out, that has allowed Nicholas to stay at St. Matt’s and pretty much keep up with his class (with certain adjustments here and there). Plus, he couldn’t be in a better cohort – a very special group of boys and girls who’ve become his buddies. Nick sings in the choir, he has a part in the spring play, and he goes to birthday parties with the rest of the gang.

Little did Miss Retseck know what a gift she’d given us that day so long ago – what a legacy she’d initiated, and what a sign of hope she’d created for others as we10402836_10152369753644034_3736989850264125269_nll. In fact, I’d say that Miss Retseck’s request accentuated three different ways that Nicky is a living emblem of what makes our parish – our Church – exceptionally hospitable. Here’s why.

First off, his very presence is a witness. To paraphrase my friend E. Michael Jones, to be a special needs student – to be any kind of student – you must first exist. That may sound strange coming from Nick’s own father, but remember that we live in world that terminates preborn Nickys at a rate upwards of nine out of every 10 diagnosed Down syndrome pregnancies. School children with Down’s are relatively rare these days not because such kids are being barred from educational opportunity so much as they’re being winnowed out of the population altogether.

At St. Matt’s, however, like most Catholic parishes and schools, kids with Down syndrome don’t stick out. Our Nick is not unique, you see, and it’s common to spot several kids with Down’s at Mass on Sunday. They’re visible and beautiful, but not uncommon. Like all the fifteen-passenger vans in the parking lot, the presence of St. Matt’s parishioners with Down syndrome is only extraordinary relative to their scarcity in the wider culture.

Another way Nicky is an emblem of hospitality is how he is cared for – how he is valued as he is. As I mentioned earlier, he’s got a great bunch of pals who include him and watch out for him. Maybe they’re vaguely aware that Nicky has special needs – that he wears orthotics and goes to therapy – but, well, that’s just Nicky! For whatever reason, this particular bunch of school children intuitively recognizes that everybody has weaknesses, everybody needs extra help now and then, and so they make room for everybody – “duh!” they’d undoubtedly add. christ_washing

Did Nick luck out? Did he just happen to wind up in a class of unusually kind classmates? Maybe, but there’s more at work here I think. For one thing, remember that this is a parish where Down syndrome is unremarkable – a community already oriented to a fundamental hospitality. The kids have heard the Church’s pro-life message and they’ve internalized the Culture of Life in a radical way. Moreover, I’m convinced they’re imitating their parents in this regard as well as their teachers, who have demonstrated a tremendous flexibility in ensuring that Nicholas is an integrated member of his learning community.

Sure, they have to make accommodations for him, and it’s always a challenge to figure out how much we ought to expect from him compared to the bulk of his class, but the teachers are always willing to try – just like Miss Retseck promised. Nick might not acquire the same set of skills and knowledge as his peers – or at least not at the same rate. That’s OK, because he is constantly being pushed to grow and progress – to flourish along with all the other students at St. Matt’s. What more could we ask for?

Finally, there’s this: Nick’s gentle and simple bearing naturally invites charity, and people cheerfully respond. This was captured in a very moving way at last night’s Holy Thursday liturgy where Nicky had the honor of participating in the foot washing ceremony.

Following the homily, as Monsignor put on his apron, we took our seats on the benches set up in the 10928204_10204792867834664_4231497712542858075_nsanctuary. “Do I take off my shoe now?” Nicky whispered.

“Yes, son,” I replied. “Your sock, too.”

After Monsignor washed and dried my foot, he turned his attention to Nick. “Thank you for who you are and what you bring to our parish,” the alter Christus murmured as he knelt before us. “You always make me smile.”

And that was it. Monsignor moved on, Nicky grinned and scanned the congregation to make eye contact with mom, and we returned to our seats. No grand revelation, no spotlight, but rather a little encounter that contributed to the overall swamp of goodness that we splash around in at St. Matt’s.

It was also an illustration of what Pope Francis asserted when he said that “we all have a duty to do good.” Continuing, he said:

If we, each doing our own part, if we do good to others, if we meet there, doing good, and we go slowly, gently, little by little, we will make that culture of encounter: We need that so much.

Do good, yes, and also receive good, humbly and graciously. That’s easier said than done in a society bent on maximizing self-reliance and minimizing dependency. The more we do it, however, the more we smooth over the rough edges that persist all around us, and the world becomes all that more inhabitable.

Lots of life, room for weakness, and opportunities for goodnesslittle opportunities, small gestures of kindness, both given and received. That’s our school in a nutshell, and I’ll bet that characterizes your parish and school as well. They’re incubators of love, and thus microcosms of the Church, don’t you think?

And just the kind of place you’d expect to find somebody like my Nicky.
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A version of this essay appeared on Catholic Exchange.

The Spelling Bee

9 Feb

And we know that to them that love God, all things work together unto good, to such as, according to his purpose, are called to be saints (St. Paul).

spellingbee1

My Nicky is in the third grade at a tough parish school, and yet, even with some learning delays associated with his Down syndrome, he’s holding his own.

As evidence of this, I’m proud to report that Nick secured a spot in the school spelling bee recently – he’s always been a great reader and a pretty good speller. In preparation for the bee, Nick reviewed and drilled and boned up on words as best he could. He was very excited about appearing in the contest, and he wanted to do us all proud.

The day of the competition arrived, and I dropped him off at school along with his siblings. “Mr. Becker, you know the spelling bee is today,” the third grade teacher reminded me. “And Nicholas is competing.” I let her know I remembered, but that I couldn’t make it – I’d be teaching my own class at the same time. Even so, I assured her I’d be keeping him in my thoughts and prayers. “Your dad will be thinking of you,” she repeated to Nick. He gave me his trademark mischievous grin and wink, and headed into class. I left for work.

Later, my wife gave me the lowdown on how it turned out: Not as well as we’d hoped. It started alright, for when Nick’s name was called, the audience let loose a volley of cheers and clapping – he’s well loved at his school, and plenty of those in attendance recognized the significance of his even making to the bee at all.

Then the audience hushed, Nick approached the microphone, his first word was read aloud to him…and he misspelled it. I’m told that he was bewildered after his mistake, and he didn’t quite understand that he was already out of the running. The high energy and the crowd, the anticipation and the microphone – it all contributed to his confusion, and he froze onstage. Nick didn’t know what to do next; it seems that nobody else did either.

Except Cecilia, Nick’s sixth-grade sister. Cecilia was also competing in the spelling bee that day, and she saw right away that Nicky was a bit lost. Now, I don’t want to overstate this, especially since I wasn’t there, but I had a number of school parents tell me about it. Without any prompting, and without asking leave of the teachers in charge, Cecilia motioned to Nick and helped him get off the stage gracefully. Her assistance only took a moment, but apparently it was enough to rattle her usual poise, and Cecilia missed her first, relatively simple word as well.

So, ready for some mawkish moralism about Nick and Cecilia being the real winners, despite their losses onstage – that every participant was a winner, and every child “above average,” à la Lake Wobegon? Naah, none of that. Nick lost. Cecilia lost. On the first round, both of them. It was painful, but they lost, and there’s no way to sugarcoat it. Hopefully they’ll do better next year.

But here’s the thing: Without Nick’s mistake, Cecilia wouldn’t have had the opportunity to respond the way she did – selflessly, unselfconsciously, generously. It was a tiny epiphany of love – Nick’s innocence and Cecilia’s magnanimity on display for all to see. It was like an object lesson in how God doesn’t waste anything, not even our mistakes.

And I missed it. Hopefully I’ll do better next year as well.
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