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!

Julia-WDsD2016

 

 

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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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A Traveler’s Diary: First Day in Country

On September 29, 2012, in Commentary, Life, by Chris

I started this post this morning sitting at a coffee bar at Rajiv Gandhi International Airport in Hyderabad, India, waiting with the team for the last leg of our travel to see our friend Jaya and all of the good things he is doing. The thirty hours of travel thus far are taking their toll, so I apologize in advance if my writing is a little incoherent. I rarely sleep well on planes.

The heat of the morning is already beginning to stir the hazy air, distorting the tail flashings of the planes sitting on the tarmac in the distance. All around me the terminal is abuzz with activity – janitors, wait staff, travelers, baggage handlers. But amid the din I still noticed workers stealing away for just a moment to catch up on the news or sit in the shade of a jetway to have a snack with friends as the stink of aviation fuel hangs pungent in the air.

I’ve been coming to India for over ten years now, and I am still struck at the triple espresso shot of concentrated humanity that I get when I arrive. So many people. So many lives. So many wills at work that it amazes me that the culture hasn’t reached a point of collective insanity. Perhaps it has, but the haze of sleep deprivation while I’m in country dulls my senses just enough to let it remain just out of apprehension.

But even amid the chaos there is design and things get done. We experienced that most recently on our shuttle ride between the international and domestic terminal and the fearless bus driver who drove headlong into a mass of oncoming headlights on a sometimes one-lane tramway. To the horror of the foreigners and the inattention of the nationals, he initiated toward the way-less-than-bus-sized space between two oncoming trucks and there is an indescribable, fluid process of challenge, collaboration and mutual yielding until all are back on their way.

And it happens way, way more than you would see in the U.S. It suggests to me that there is some kind of internal order amid all the chaos that is so ingrained in the Indian psyche that It would take more than the millennia that forged it to find out what had been really created.

Everyone is on campus now and quickly bedding down to start repaying their sleep debt. You’ll hear more about the delayed flight, the bus breakdown the iffy power grid and the flower pedal charged reception tomorrow. But I did want to drop you a quick line to tell you that it’s great to be back.

The world is a book and those who do not travel read only one page. – St. Augustine

republished from cemindia.blogspot.com

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Dancing On

On September 3, 2012, in Julia's Journey, by Chris

The summer is nearly at an end, and we took in the waning hours of the Labor Day weekend with an art show and parade in nearby Franklin and some well deserved afternoon napping. Julia has been down for over two hours; and though she needs the rest, it’s always hard not to dread the implications that a late afternoon nap has on her nighttime routine.

Everyone who sees her says that Julia has grown so much. I’ve observed more than once that she looks more like a little girl than a baby now – her now frequent army crawling all over the house having lengthened her out some. She’s started to lose that marvelously squishy pudginess and those awesome and kissable “fat cuffs” on her wrists are starting to fade.

A lot has unfolded with this little girl over the summer – much of it makes me smile as I think about it. I have love watching her engage more and more and begin to truly understand the things we are saying to her. Jocelyn and I have had whole conversations lately spelling out the trigger words that get Julia excited, like “d-i-n-n-e-r” and “j-u-i-c-e”. She’s also starting to work on the hand signs for some of the songs her toy puppy sings (Head, Shoulders, Knees & Toes is one of her favorites).

And of course, there is a lot of therapy. And it’s perhaps there that the more discouraging parts of the summer come out. Let me start by saying that it’s not her progress that’s disappointing – far from it. As I’ve explained in a previous post, we have to take care to let God and Julia determine who she is. But at the same time, Jocelyn and I work really hard removing as many barriers to her progress as possible. Despite our aspirations, it has felt like we’ve spent the entire summer coming up against one roadblock after another.

We have slowly been moving from wide-eyed ignorance into rueful realization when it comes to interacting with any institution – be it the state, the insurance companies or the school district. I know every parent out there – with typical kids or special needs – is smiling and shaking their head. Bear with me – I’m still new at this.

It started with being denied summer services from the school. Okay, not a big deal – happens all the time, we’re told (at least in our district). But it still felt like a kick in the gut. It was then that I started to understand what every parent feels when their child is denied something. “They don’t know our family! It’s MY job to deny my kid!”

We decided to roll the dice with our private insurance to bridge the gap over the summer. Success! Julia was approved for eight sessions and the work began in earnest. We got a lot of great tips from the therapists and an interesting new motivation. It seems that getting a child to walk “unlocks” a lot of other development – including speech. In fact, we were told that the speech therapists at the rehab facility don’t typically want to see kids who aren’t already walking since their progress is so much slower.

That little piece of info, along with the promise of assistance from Julia’s state supplemental insurance, ignited a little dream in the Cook family – one that I’ve articulated only a few times. We decided to go “all in” and get our Julia walking by Easter.

I know that setting a goal like that breaks the aforementioned maxim of letting God and your kid determine your kid; but the way I thought about it was that it wasn’t a goal for Julia as much as it was for us. Let’s pull out all the stops and commit ourselves to getting her the help she needs to really fly. If we miss the mark, she’ll still be a lot farther ahead than if we sit in relative complacency. So I dared to share that dream with a couple of the therapists – one from the school and another from the rehab facility.

And I got silence. I’m not sure what that means.

We got another disappointment or two as well. Our private insurance denied any further therapy, saying that Julia had a “developmental delay” that will not show significant enough improvement within the window of time that their policy demands. Not more than a week later, we were told by the rehab facility that the state supported therapy would have to be suspended indefinitely since the state was not paying providers for their services. The last session was a week ago.

We still had our head up, though, because our original mission was accomplished. We had bridged the gap in services over the summer and set Julia up to really excel when Early On services start up in a few days.

In the end, we are still going to work. Hard. And we will have to continue to give our little girl to God every day – sometimes more than once – and trust that his plan for her is totally, totally good.

I watched Julia this afternoon in a new ritual we have of turning on the iPod and dancing together with joyful abandon (sorry for the image I just put in your head of me dancing). I envy her carefree spirit as she wiggles and twists to her favorite tunes, and I can still hear her elated giggle in my head as I write. I’m sure I’ll spend another day worrying about whether we’re doing enough – it seems to be hard wired in me.

But Julia has other concerns at the moment: “What songs are we going to play and are we having grilled cheese for dinner?” Her musical taste biases more toward Sara Barielles and Andy Grammer, but any catchy tune with a good beat will suffice. For now and for the future, I’m happy to do the worrying while Julia dances on.

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Autumn in the Midwest and Elsewhere

On November 18, 2011, in Julia's Journey, Life, by Chris

Hey – been quite a while. For those of you who have been following our story, I want to apologize. After a year of pounding out these posts in reasonably quick succession, I’ve found myself in kind of a winter of my motivation. I came back from India and honestly wanted to spend some time with my family that was as undistracted as possible. Anyone who knows me knows that’s quite a trick, considering how many things I like diving into.

Blogs – especially if they’re done well – take a lot of discipline to maintain and create an itch similar to when the lawn goes un-mowed for a couple of weeks. You look out the window and there it is, and there’s a tipping point of motivation that comes into play: “Should I get out the lawn mower and get it done or does the couch and the remote look more enticing?” I could wind this metaphor out even further and talk about the neighbors complaining, but you get the idea. (And thanks to my brother-in-law Jonathan for the image!)

So now I’m hanging out at Costco getting some new tires for the Camry, and I thought I’d get you up to speed on the goings on over the last month.

Being away from the family in India for ten days wasn’t as gut-wrenching as I thought it was going to be. There were certainly pangs of it when I sat and thought for too long, but the pace of activity and the crush of the in-country experience thankfully kept my mind off of it. Most of my time was spent behind a camera telling the story of CEM. I came home with 2400+ images and my perspective realigned for a while. I’ll have more about that later.

Not long after my return, we took advantage of a trade show that Jocelyn was attending to visit her brother and his family in Fort Worth. It had been almost a year since we had seen Jonathan and Deirdre last Thanksgiving and their son Oliver has grown up! Julia was really excited to meet him and he showed amazing patience with her even though he is not even a year her senior.

We also had time for breakfast with the Gilmartins, our dear friends transplanted from Detroit. And in Grapevine, Texas, we visited the Torian Cottage, a log cabin bought by one of Jocelyn’s ancestors back in the mid-nineteenth century and occupied by the family until just after the Second World War.

Oh, yeah – and we celebrated Halloween in Texas as well! Miss Julia was styling in her University of Michigan cheerleader outfit at her cousin’s costume birthday party (okay all you Ohio peeps – no hatin’! We are equal opportunity – send us some OSU stuff and we’ll put it on her). She then tore up the trick or treat circuit on the mean streets of Fort Worth in a pink skeleton outfit courtesy of Old Navy – accessories and hair by Mommy.

The family visits didn’t end after we got back. The following weekend, we visited with my sister, Lisa, who was spending some time out at the farm. While we were there, we did a quick photo shoot of Julia for our Christmas card. No previews until after we send them out!

We also met some new friends last week. Babycenter.com was a real godsend to Jocelyn as she was processing and preparing for Julia’s birth and all through the challenges of the months before the surgery. As much as she gained from the deep base of knowledge on the site (there are forums literally for every issued out there from Down Syndrome to the best ideas on effective potty training), Jocelyn is starting to give back with the experience she has gained. Jennifer is a local found us through Jocelyn’s avid activity on Babycenter and read the blog to hear more about our story. She and her husband, Dave, are the parents of twins – one of which has Down Syndrome.

It wasn’t too long before we set a date for the zoo. Truth be told, our hearts have knitted together in a surprisingly short time and I think we may have some lifelong friends!

You’ll be hearing more stories very soon, but we’re going on the road again tomorrow. We’re going out to the farm, transferring all of our baby crap into my Dad’s big “grandpa cruiser” and shooting down to Washington D.C. to spend a long holiday weekend with my sister and her family.

Good to be back!

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