Every Day is WDsD

On March 21, 2016, in Commentary, Julia's Journey, Life, by Chris

CrazySocks

My Facebook feed has been blowing up over the past 24 hours with all kinds of videos, images and well wishes from our community. It started last night with a video from a family that has been walking alongside us – then a text message from the principal of Julia’s school telling all of the students to wear their craziest pair of socks as the beginning of a more intentional celebration for a sliver of their community.

It’s World Down Syndrome Day – the one day of the year it is universally cool to be a friend of someone with Ds! So allow me to put on my “crazy socks” and tell you a little more of what’s going on from the perspective of a man whose life got ambushed by a little girl with an extra chromosome hitchin’ a ride with the typical 21st pair.

If you’ve been hanging around my social media feeds for any time at all, you’ve been acquainted with Julia. As a freelance photographer, I try to regularly put out a picture to let folks know how she’s growing. You’ve seen her through the walker stage into preschool, the endless hours of therapies, and the ubiquitous “giraffe horn” hair buns that Jocelyn fashioned to keep her from chewing on her hair.

We’ve received unceasing encouragement from all of you over the years – from the comments on how cute and precious she is to the challenges we hear from you to press on through the adversity of navigating the bureaucracy of service providers to get her the help she needs. Sometimes I even wonder if Julia’s social media following outpaces Jocelyn’s and mine combined! Such is the life of a little girl with her own entourage of stylist (Jocelyn) and publicist (me).

But even with the love we get from our community, I’ve noticed a change in the way strangers interact with her. There is now just a tiny minority of people who don’t quite know what to do with Julia when she busts into her ballet routine in the middle of a crowded mall or expresses her still inarticulate but very clear frustration with directions. Don’t get me wrong – there are still loads of smiles and comments on how beautiful she is. But sometimes I hear the unspoken “… for a kid with Ds” at the end of the compliment. There is a quiet standard I hear that seems to be applied to all school age kids where “typical” becomes “normal” and “normal” slides into “expected” and these young souls are filed on to the treadmill of striving and competition that will follow them through adulthood. It’s an atmosphere that my kid just isn’t built for.

We’re getting to the stage where, just like any kid her age, Julia’s innate cuteness is starting to wear off and the real differences (along with some of the attendant social embarrassment) are becoming more pronounced. Julia is very tentative and even fearful of high-energy situations that she’s unfamiliar with. She is a creature of habit whose desire for quiet and television time can torpedo an evening social gathering. And we are still fighting for every syllable in her speech therapy – the progress is real, but painfully slow.

I’m sure that some of this is due to my own hang-ups. I still have to remind myself that despite a world bent on progress and its hostility toward anything or anyone that isn’t economically value added, there are people – lots and lots of people – who know that value isn’t solely measured by productive output. There are those wonderful people who love the differently abled for their intrinsic humanity and not the packaging they come in. They’re willing to bear with our Julia because she belongs to them as well – no matter what her mood happens to offer up at the moment.

One thing you know you’re going to get: pure, unfiltered, no-hidden-agenda Julia. Sometimes impolite, other times a fist bump or a hug – all of it is very, very real. This kid has no guile and you never have to wonder what she is feeling. And in a world full of agendas and deception, that can be as refreshing as it is frustrating; because with every interaction, I have to decide if I am going to press my agenda or enter into her simple desires.

Julia forces me to step off the treadmill of my agenda and engage with hers. She encourages me to be a little less selfish and reminds me that my story is only a part of the larger story. How can that be a bad thing?

So here’s to our girl – with all of her love, simplicity and challenges. With a community like you behind us, we get to experience the love and support of World Down Syndrome Day all year round!

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Four World Down Syndrome Days have passed in my daughter’s life, and this will be the third one I’ve written about. I missed the first one because it was only a couple of months after her heart surgery when we were still taking in how marvelously normal things were becoming.

A lot has happened since then, and I’ve been scanning through some of the other blogs of parents of kids with Ds (it’s all but compulsory to do a post on 3/21 – I’m no different) to hear what they’ve been saying. Much of it has been personal, some of it political – all of it has been eloquent. I hope I can offer the same eloquence, but I will admit to you that I was tempted to let the day go by unrecognized.

But a writer friend of mine reminded me this morning over coffee that one voice left unspoken will leave an uncountable number unblessed for the hearing. I’m really trying not to be overly dramatic when I say this; but I really wasn’t obligated by the rest of the Ds community to write. At that moment, I felt compelled by something much deeper to speak into the din to change a few minds and maybe make a few lives better.

The message is that important, but I’m not sure how much of a blessing it will feel like on first reading. I would be remiss not to warn you in advance that this was a tough message to write and, I am sure, will be just as hard to read.

Most of you know that I’m a pretty avid photographer, so I spend a little time every day flipping through various articles to keep up with what’s going on in the industry. A few days ago, I came across a story about a photojournalist who got access to three psychiatric institutions in Serbia and Kosovo while he was living there between 1999 and 2002.

My internal censor told me that I really didn’t need to see it; but after some hesitation, I clicked on the link and did my best not to let the images that followed steal my soul.

It didn’t work. They can only be described as worse than anything I’ve seen from the Nazi concentration camps. Why? Because by the time the Allies liberated the camps and started documenting the atrocities there, the children were all gone.

But as I looked at the faces of some of the children (some of them clearly with Ds) in those beleaguered, underfunded wards, I admit that I asked God about the broken lottery that landed those children there and my daughter Julia in a modest suburban home in Michigan.

I found out later that as a result of the journalist’s work, funds were raised and NGO’s intervened to improve conditions; but in that moment, it scarily got worse.

At first, I was glad that our society has become so enlightened over the last several years:

  • The average life expectancy for a child with Ds has more than doubled in comparison to age 28 in the mid-1970s when institutionalization was still the predominant answer.
  • Public school inclusion of children with Ds and myriad other disabilities is the law of the land, if not always the practice in the schools.
  • The overwhelming majority of children with Ds learn to read and write and can eventually gain some level of independence.

I felt better knowing that the institutions (in the U.S., anyway) were shut down and we were no longer warehousing our differently-abled children.

But then as I was sitting there pondering it, a quiet voice inside of me answered…

We’re not warehousing them anymore. We’re killing them instead.

When I’ve poked around the internet in the past looking for the abortion rate of prenatal children diagnosed with Ds, a figure of 90% often bubbles to the top of many searches. It turns out that it’s not a true number, but the reality is not much better.

A systematic study of pregnancy data published in Prenatal Diagnosis in 2012 – widely considered the most reliable to date – put the number at closer to two out of three pregnancies being terminated after a prenatal Ds diagnosis. And with the development of new non-invasive blood screens earlier in the pregnancy, the opportunity is only going to grow.

Now I don’t know where you land on the abortion debate; but whether you agree with it or not, the fact remains that there are a whole lot of children with Ds that would have lived except for direct human intervention before they were born. And if they had been born and lived, perhaps they might have surprised their families and communities with their intrinsic good – even if their arrival was unexpected.

The Ds community is a pretty tight one, and we can be pretty brutally honest with each other when the need arises. We share our frustrations and fears for our kids’ present and future; but I can’t point to any family that could imagine life without their kid – Ds or otherwise. Mine certainly can’t. And all you have to do is take a cursory look at Facebook today and there’s a friend sharing a link with a testimony on the unexpected blessing a kid with Ds has on families all over the world.

I guess I’ve said enough about the brutality at home and abroad – and I’m even willing to entertain the possibility that the aggregate lot of people with Ds is on a slow upswing. But my argument is this: Whether we want to admit it or not, the world is still pretty hostile to our friends – and folks with a whole crap ton of other disabilities as well – and it’s in the name of efficiency (they aren’t fast enough), consumerism (they don’t spend enough) and selfishness (they aren’t “part of the plan”).

So okay – now for a little dash of hope:

Let me hasten to add, here, that I can never remember a time in my daughter’s life that I know of her being overtly disdained or excluded. God has blessed us with a marvelous community that treats Julia like a little rock star. But a day is coming when the heartbreak will happen. I don’t know if it will come from honest neglect or thoughtlessness, or worse, from boorish and mean spirited insensitivity; but I do know that whoever it is, they will see Julia not as a person, but a problem. She’ll be a stranger to them.

That’s the real difference. Our community has surrounded and accepted my daughter. They are interested in her life, they know her and have told the world, “She belongs to us.” She has become important enough for people to turn aside and take time to walk with her through life. And that’s where we have a shot at really making a difference.

There are a couple of challenges I want to humbly offer you:

First of all, Get Informed. Take a moment and check out some of the facts about Ds. Most of the statistics I got for this little tirade, I found right here. There’s some sad stuff, but a whole lot of really hopeful stuff as well – just like anyone else’s life.

But more importantly, Make a Friend. The reality is, you can never be a part of the oppression of people you really know, but it’s estimated that only 38% of the U.S. population knows someone with Down syndrome. So take the time to turn aside and really be blessed by one (or more) of these truly amazing people.

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In the end, it’s about the adding more voices to the human conversation. Folks with Ds may not be articulate by conventional standards; but make no mistake – by their very presence, they will speak love into a world that needs it so badly. It is a far more beautiful life because they are in it.

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Editor’s note: As strange as this might seem, Julia’s formal educational career starts today at the three year old preschool class at our local elementary school. I’ve been anticipating and dreading this day for the entire summer, especially in the light of the wrangling we have been in with the special education department of our school district. What follows is a letter to my daughter on her first day of school…

Hello Julia –

First of all, I want to tell you how much I love you and what a blessing you are to your mom and I. You have made our lives richer and more beautiful simply by being who you are, and I wouldn’t change that for anything!

I want to start the story I am going to tell you with a picture I took while we were on vacation in June down in Washington D.C. We went down to the National Mall to look around and at that moment were at the memorial to Franklin Delano Roosevelt. Many of his quotes are carved into the marble walls of the monument.

We came up on this particular wall as a bunch of high school students were posing in front of it for pictures. As they walked away, laughing and talking, we were left alone for a moment. The idea for the photo started out as kind of a lark, but I had no idea of the impact it would have on me. Your mom leaned you up against the wall and dove out of the frame and called out, “How big is Julia?” You absolutely beamed as you threw your hands up in triumph, and I got the shot.

And then I cried. Hard.

Let me tell you why…

It’s been really frustrating sometimes getting you the help we think you deserve, sweetie. It’s understandable in some ways, I suppose. You’re our kid. We see you all the time and share some of the most intimate moments of life with you and God has revealed to us – like a bazillion times – just how incredible you are. That’s a hard thing to make institutions that were created with the intent of helping understand. Many of them have limited resources and opaque motivations for what they do with those resources. To them, you are a problem to be solved instead of an adventure to be lived out.

No more than a week before I snapped that picture, your mom and I were in a meeting with some officials from the school. We went in with an idea for what was best for your long-term future and, since we were told that we were a part of the team, we thought we would be heard. I’m not sure why we believed that, because we had been frustrated by this crew more than once in the past.

We had to be constantly vigilant over the slow degradation of services that you were entitled to over the course of the school year. You needed physical and occupational therapy. They sent a special education teacher and basically told us with a straight face that all of your goals for walking and eating could be fulfilled by this teacher with “consultation from the therapists.” They called it a “Primary Service Provider Model.” I called it bankrupt.

And yet, we went into that meeting with a proposal in mind (and a very nice lunch in hand). It was quite simple: place you in a general education setting at your home elementary school with your typical peers and a preschool teacher with twelve years of special education experience. If, after a month or two, it was decided that you were struggling in that environment, we would reconvene the team with a mea culpa and another lunch to figure out a new plan.

To shoot for the stars and have to make a change would not have been a failure. The failure would have been never giving you the opportunity. We knew that this was the intent of the federal law that was written for you – to try you first in the least restrictive environment and adjust from there.

The meeting lasted almost three hours. And it didn’t go the way we had hoped. The team from the school had their agenda and everyone had their script. It’s as if the whole thing had been laid out before we even got there. It’s as if we weren’t really a part of the team – just the recipients of a very high pressure sell job. The consensus of that team was that you needed a special education class, and they spent over an hour laboriously making the case.

But even after the grueling walk through the data that was presented, I still had the naiveté to believe that we could come to a compromise. But then the Special Education Supervisor (who has since vacated the position) informed us that the proposal was an “all or nothing” proposition. We either accepted the team’s recommendation in its entirety or none of it. If we refused the recommendation, the school would be released from its obligation to provide you with an education program and the therapy that you needed.

Now, anyone with even a basic understanding of special education law would know that that was patently untrue. The supervisor knew that it was untrue. Julia, that’s called negotiation in bad faith. I know, because I looked it up.

We left that meeting pretty deflated, but we got our mess together and asserted ourselves a little more and came to an agreement. The school would remove the social and educational goals and not be held accountable for your progress in those areas, but would still provide your physical, occupational and speech therapy.

We could have lawyered up to fight over the principal of the matter, because we still believe the special education team is shirking its responsibility. But we decided sometimes it’s better to concede the battle so that a greater good can be pursued. Bottom line – we’re in it for the long haul, and we’re trusting that God is directing us about which hills to die on. And sometimes it’s better to be collaborative than contentious.

I’ll be very honest with you. Sometimes it gets tiring running our heads against what feels like a brick wall day after day. But Julia, your mom and I will do it a thousand times more; because every day we get reminders that that there are people out there – even in the school system – who see the adventure in you more than they see the challenges.

We have spent time with the team of people who will meet you every week at preschool. Your teacher and the support staff were rooting for us as we considered options over the summer and gave us space to make an informed decision, but were really glad when we decided to partner with them. They’ve rolled out the red carpet for you and have frankly been the most collaborative team of people we’ve encountered. Only a week ago, we spent time with them strategizing how we could design the best place for you to learn.

Even at the preschool orientation the other day, we were walking down the hall to leave and a couple of older girls peeked out of the gym, and looking at your walker, asked if you had been hurt. Your mom matter-of-factly replied that you had Down syndrome and just needed a little help walking. The girls kept saying, over and over again, how cute you were and seemed really excited to have you as a part of the rhythm of the school. It’s clear to your mom and I that the staff of your school is creating a really positive culture.

Then there’s your little friend, Brooklyn. I’ve written before that your mom and I can handle the trials that come with Ds – educational, medical and otherwise. But the thing that really scares us is whether you are going to have life-giving friendships beyond us. God sent us a pretty clear messenger a few days ago in a little towheaded girl you know from daycare.

Brooklyn sought you out at church last Sunday, gave you a hug and a kiss, and in the purest and clearest voice imaginable, proudly proclaimed to the world that you were her friend. I still have to catch my breath as I remember that moment and the deeper message that it enveloped. It took the words of a child to convict me, yet again, that God is mindful of your needs and longings far more intimately than your mom and I could ever be. He’s got your back – and ours.

Three years ago to the day, just before your were born, I sat down as a scared soon-to-be dad to share this adventure with the world. For three years, a very large chunk of that adventure has been you, Julia. You have taught me so much about what it really means to live outside of myself, and I can’t wait to see what you are going to teach this new community that you are stepping into. I believe you have a gift and a call to help them embrace and retain their humanity, and to reflect the love that God has poured into you back toward the world.

In the end, I really do believe those words carved into the marble of that wall in Washington. You do have a rendezvous with destiny. And the community that surrounds you, your mom and I say:

Bring It.

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Working + Waiting = Mobile!

On August 30, 2013, in Julia's Journey, Life, by Chris

As a parent of a kid with Down syndrome (or any special need, for that matter), you find yourself never taking anything for granted. Sure, it can get frustrating watching your kid’s typical friends seemingly breeze through crawling and standing and walking and learning new words as yours is still figuring out the intricacies of sitting upright. But when we are in that healthier place of letting go of the comparisons and simply enjoying and remaining in the here and now, there is an awful lot to learn.

Julia has this slow, methodical way of forcing me, whether I want to or not, to learn the art of expectant waiting. Jocelyn has a way of teaching me to work – hard – as we wait. Both of them have it all over me in those categories.

But let me set the scene for the kind of fruit that working and waiting can produce:

A little over a year ago, we (mostly I) put a goal out there that we wanted to see Julia walking by Easter. I shared it with a few professionals with whom we were working at the time and they seemed pretty reserved to the idea – that awkward place of knowing there’s only the slimmest chance of it happening, but not wanting to be the killjoy. So we marshaled our energies and pushed forward, angling for many as physical therapy consults as we could. One of the therapists even let us borrow a walker over the summer to hopefully motivate her.

I’m pretty sure that you won’t be surprised to learn that Easter came and went and our little girl still wasn’t making tracks on her own. In fact, the lofty goal that we had set the summer before really didn’t make it through the winter as the realities of Julia’s progress forced us to change from “Easter” to “someday soon”.

It wasn’t as if there was no progress. In fact, she was using a chair to walk around at her daycare by the time the spring buds were on the trees. But it always seemed like she treated it as more of an activity than a useful, necessary life skill. Crawling was a much more efficient and familiar means of movement. And the walker? It was gathering dust by the front door at home.

There were theories. We were assured that her gross motor patterns were typical. There were few bad habits that she had to unlearn. She had the strength, but either the confidence or the will – or both – were lacking.

But the work continued. I have spent the entire summer hunched over so my daughter could grab my fingers to walk. Jocelyn focused with the physical therapists so that Julia could (with a lot of complaining) become accustomed to balancing herself, and there were endless games at home to get her standing and moving. We were even able to get her interested in the walker now and then.

We often describe the moment that Julia catches a new skill as “the flipping of the switch”. For instance, we had been working with Julia for months on learning to crawl on all fours and wondering whether she was ever going to get it. Then one morning over the last Thanksgiving holiday, she found an ample expanse of floor and just did it.

And she never stopped. We look back and say it was like flipping a switch, and remember the humor as we stood there, dumbfounded, as all of the work, all of the therapy, all of the encouragement cosmically wove itself together and played itself out in the unseen interplay of nerves, muscles, bones and the brain that was madly coordinating it all.

We have not seen a quantum jump in ability since then. There had been encouraging flashes of progress, but it had always been very incremental and hard won. But last Sunday, another switch flipped.

It started with a stroll with the walker that Julia had never taken past the neighbor’s house. I watched over my shoulder as I was watering the basil as she cruised and adjusted and cruised again past four houses to the corner. From a distance, I saw a short negotiation between her and Jocelyn and they started across the street.

I get so focused on the task right in front of me that I can often miss the adventure happening all around me, so I was a little slow on the uptake as far as what was going on. I was finally shaken out of my trance when I got a call from Jocelyn asking me to come to the playground a block and a half away. Apparently, Julia had found her motivation and was going to get to that marvelous place that she would see from the car, but never got the chance to experience. She was going to get there by any means necessary.

Once more, all of the work and therapy and encouragement and practice converged and coalesced that warm Sunday evening; and my daughter’s world got… bigger. A thousand times bigger. And as I hurried to catch up, some kids from the neighborhood joined her as she explored the structures in that little playground. And for a little while, she was just another kid and we were just another family enjoying the playground. And all of the work was marvelously worth it.

We’ve been back – more than once. But this little girl is very, very different from the one just a week ago. She is slowly beginning to discover a new, wondrous facet of her autonomy. I can only imagine the possibilities that have awoken in her. Look out, world! Here comes Julia!

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Day #082Let me just get this out there right now. I had a really rough time adjusting my attitude last night as I put Julia to bed. I’m not sure if it was the last of the stomach bug she’s been dealing with or the contrarianism that her whimsical toddler brain has developed, but let’s just say she was a hot, crabby mess. Don’t buy all of the angelic pictures of squeaky-clean and smiling kids with Ds that you saw on Facebook last week. They can be just as much of a pill as a typical kid.

I’m glad to say the night ended better than it started, but it was Mom that closed the deal and finally got her chilled out.

I watched all of the publicity and exposure that Down syndrome got on March 21st – World Down Syndrome Day (editor’s note: 3/21 is a play on Trisomy 21 – the genetic condition that is the basis of Down syndrome), and I am still blown away at the number of lives that have been touched in one way or another by these extraordinary people. I read the blogs by writers far more articulate than I calling for change and action – not just awareness.

We spent the day visiting Julia’s cardiologist and endocrinologist for her six month check ups. Everything is good, but now the battle front has shifted from heart valves and thyroid hormone counts to attitudes in schools and workplaces – stuff we weren’t even thinking of two years ago as Julia was recovering from her surgery.

As we have settled into the routine and begun to push into the possibilities of her preschool, I’ve honestly been a little mystified at the latent attitudes that would put my kid in a box in terms of her aggregate potential. At one time or another, sometimes from a well-meaning friend and other times from a school administrator refusing to execute the plain meaning of federal law, we and other parents have been told that we need to adjust our expectations of what our children will be able to accomplish.

Our children are often denied even the most basic physical and occupational therapies by insurance companies because they are deemed to have a developmental delay and will not progress in a way that is economically feasible. There are professional educators that have written off our children in the classroom because they have decided they will spend their adult lives never having regular contact with typical peers.

Some call it coming to terms with reality. I say it ain’t reality yet. There are challenges, to be sure, but my deepest conviction is that we have not even scratched the surface in terms of the contribution to the welfare of a community that any kid with Down syndrome can make. Perhaps we need to start redefining our terms of what those contributions are beyond earning potential and worldly accomplishment.

So one week after World Down Syndrome Day, I offer you one more voice of a parent of a kid with Down syndrome and how you can help turn the tide: We can handle the medical issues our kids have. We can push through the ill-executed policies of the school bureaucracy. We can deal with the realities of their condition as they unfold. In the end, every day is World Down Syndrome Day for us.

However…

What’s the one thing that keeps a parent of a kid with Down syndrome up at night? What has, more than once, jolted this father out of a sound sleep? The thought of Julia living her adult life excluded from the vibrance and rhythm of day-to-day life that the rest of the planet takes for granted. We’re afraid that our culture will not slow down and see the beauty that we see every day and decide to invite them in to stay.

So what do we ask? Meet our kids, look them in the eye, tell them from your heart that they, like every other human being on the planet, are hard-wired for struggle in life. But they are worthy of love and belonging.

Be not only aware of Ds, but act on that awareness. Make space – real, substantive space – in your life and your family’s life to know our kids and everyone with Down syndrome deeply, and gently resist the attitudes and institutions that keep them segregated from the mainstream of life.

I think you’ll find – as many have – the effort has a return on investment that will surprise you.

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