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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7 Responses to An Open Letter to Julia on Her First Day of Preschool

  1. Jessica says:

    God bless all of you on this new leg of your journey!

  2. Carol Boyer says:

    Just took a few minutes of quiet time to read your letter. Thank You for sharing your adventure and for stirring my heart to pursue Is. 1:17 Learn to do good, seek justice…
    Life is an continual lesson to be learned as we experience new adventures. The joy of seeing Julia growing, changing, mastering life has been an adventure in my own life. Julia truly is a gift to this world impacting all who meet her! Mom & Dad are pretty awesome too! Many Blessings.

  3. Colleen Aylward says:

    Oh my. I read this story and cried too. Our time on this planet is so short when you think about purpose and meaningful contribution. If the phrase “It’s not what happens to you that counts, but how you react to it,” then you and Jocelyn are way ahead of most of us… My hat is off to you.. Not for caring for a D child, but for accepting your situation as a gift, and embracing the entire ball of wax that comes with it.. and finally, for having large enough hearts and small enough egos that you share and inspire the rest of us.

  4. Lauren says:

    I feel so privileged to have been with Julia, you and Jocelyn on that walk through the FDR monument grounds last spring, and to have been part of that shot, cheering Julia on to stand, cheer, hold on to that moment. It was profoundly moving. I witnessed us all suddenly feel small before her, saw this tiny little girl, who was already making our lives bigger than we could have imagined, stand up to this big idea, her own rendezvous with destiny. We all gathered to hug you, my big little brother, as your tears spontaneously, unexpectedly flowed. It blew me away as I saw you, us all, arrested and humbled by the grace of that moment. And I felt, quite viscerally, the power of your hope, your faith in this child. Wow. Julia could have no better stewards than you and Joce as she turns each life challenge into an opportunity, as she m a k e s her own destiny.

    And as of today, another milestone — school! Can you hear your Aunt Laurie, the teacher, clapping for you Julia, and blowing you all kisses?

  5. Lisa says:

    Chris, Jocelyn & Julia – This is why social media exists! Sharing ideas and moments in our lives is so important. If we had had it twenty years ago, you would know how that these events parallel those of Zoe & Zach. Parenting is an anxiety ridden business. The kids keep us on track and encouraged.

    I just returned from visiting Zoe in Salem, and Paul is back from Missoula. They have homes, friends, work, school, plans, frustrations, and fears. It’s given me a wonderful feeling that all the energy Paul and I put into every detail of their little lives, has paid off. Julia will have all this and more.

    I know this because when I held her the first time, she was fragile and weak. So weak that I wondered if she was going to be able to stay with us. Now, she is strong and determined. She isn’t thinking about school policy or stereo-types, she is already beyond that. Our kids are on their paths, obstacles be damned. We are the lucky supporters.

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