running for my life

I’m a runner.

That’s a sentence I never thought would apply to me. There was a time I didn’t get running. There was a time I didn’t like running. There was even a time I resented it–-it represented something I wanted to do, but didn’t believe that I could do.

Lately, I’ve been able to say I’m a runner and feel comfortable about it. I still joke from time to time that I know I don’t look like a runner, and I know I’m not built like a runner. But I’m a runner. These days, I’m much more comfortable with how I’m built because I realize now that this is a runner’s body. I’ve waged war against this body for most of my life. (That’s something I could write pages about.) But this body has carried me through a 20-mile training run. And in just a few days, I will cross the finish line at my first marathon.

I’m running because of Down syndrome. I’m running for Down syndrome. I’m running for my life…

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Rewind about 18 months. I was in a very different place–spiritually, emotionally, physically, mentally. There were a lot of things going on in my personal life–dark things, hard things. My marriage was deeply troubled. My job was difficult. I spent a lot of time on my own trying to make it with two kids, missing home and my family, loathing my post-partum body, feeling really bad about myself, and–-if I’m honest–-feeling sorry for myself. Somewhere in the day-to-day, I got lost.

My husband, meanwhile, was doing things–important things. Hard things. He was setting and reaching goals. He was pushing himself to do things–like running marathons. And that was hard for me. I did the best I could to hide that, but I don’t think I was very good at it. I did the best I could to show support in the ways that I knew how, but I felt like I’d been left behind.

And then one day, as I scrolled through my Facebook newsfeed (that’s often dominated by posts about Down syndrome), I stumbled upon this group called I Run 4. The premise is simple–to match children with disabilities, especially mobility issues, with runners who would run for them. At the time, I Run 4 was just a few thousand members strong, if that. Now, it’s grown to over 25,000 members and includes kids and adults with all kinds of disabilities (not just mobility issues), as well as different types of athletes.

The stories I read were nothing short of inspirational. Here were these kids that would give anything to be able to run, or play with their friends, or do any number of the things other kids get to do. Kids that work harder to accomplish things that most of us take for granted. Kids that have been through surgeries and treatments and therapies and were still smiling and loving life.

Kids that are tough as nails.

And there I was, wallowing in self-pity, in a pretty bad place and in need of some major change. And it hit me: if those kids could work so hard, what was my excuse?

I wavered for a couple of days before signing up–what if I failed my buddy? What if I couldn’t make it as a runner? It had been years since I’d laced up my running shoes, and I was at a point I thought I would never run again.

But I signed up. I signed up to be a runner.

I waited for about 3 weeks to be matched, and I was matched with a fierce little boy named Shane. Shane has a mega-watt smile and soulful eyes, and he happens to have cerebral palsy. The minute I saw his picture, I was in love. The minute I read the first letter from his mom, I knew I’d found someone to respect and admire–she is an incredible advocate, sharing his journey with so openly, and stopping at nothing to make sure he gets the best care.

Shane has been through so much at his young age. Yet he’s determined. He’s loving. He’s happy. He’s a valued member of his family. And he changed my life. This little boy–-who lives hundreds of miles away from me–-became not just the reason I put my running shoes back on, but also the reason so many things in my life changed for the better–-I renewed my faith and I grew closer to God. I started thinking about pushing myself a little harder. And I wondered if maybe, just maybe, I could run a half-marathon.

And then at church one day, they announced they were forming a running group to train for our city’s famous marathon and half-marathon. They challenged beginners to be bold, to try something they’d never tried. To connect their physical life to their spiritual life. And to trust that God would be the source of their strength during their training. So I signed up to train and showed up terrified the first week. But then I made friends. Really, really great friends. And I registered for my first half-marathon. And then I ran it, with my really great friends, and it was awesome.

Thanks to Down syndrome, I found I Run 4. Thanks to I Run 4, I found Shane. And thanks to Shane, I found myself again.

I’m running for my life.

*******

For the past few days, I’ve been struggling with an article I read in which a mother details what she calls the “merciful termination” of her baby with Down syndrome. I’ve struggled because I think there was a time in my life I would have agreed with this woman. There was a time in my life, after prenatal tests came back abnormal, that I wrestled with what I might do if my baby had a grim diagnosis. I drove myself mad trying to decide what would be the merciful choice. And I had friends and family in both camps. People I never would have expected to support me if I had chosen not to continue the pregnancy said they would support me no matter what. And that scared me. I remember wondering why they weren’t trying to convince me otherwise. (I feel like I should mention that my husband never wavered–-he wanted nothing to do with talk of terminating the pregnancy. To him, it wasn’t even an option worth discussing. And I’m so thankful for that.) I also had friends that reminded me that above all else, my job was to protect my child’s life. That the strong and merciful thing to do would be to love that child fiercely, to give him a chance at life, no matter how short or difficult it might have been. I remember standing in the shower one day, sobbing and praying through my tears before the follow-up test results came back, “Please, God, I can handle Down syndrome. I can handle spina bifida. But I don’t think I can handle the others.”

It doesn’t matter what I thought I could handle–I think God knew that at the time, I couldn’t even handle Down syndrome, as my test came back normal. And although my pregnancy continued to be difficult, I didn’t have to think about whether or not I would have to make the choice to continue it.

I look at my son now and I shudder to think what I might have thought was the merciful choice had I known then that he would be born not just with an extra chromosome, but also with a life-threatening medical condition. I could have been the woman that wrote that article. And like she does, I probably would have stood by my choice. But my choice would have been made on misinformation, which is the other reason I’ve struggled with that article.

Misinformation about Down syndrome is pervasive, even in the medical community. And at this point in the game, as another advocate put it, the challenge is for women to be given the support necessary to continue the pregnancy when a child is diagnosed with an abnormality. Yes, pregnancy termination of any kind stirs up a lot of heated debate–I understand that. But I’m particularly passionate about terminating on the basis of disability because it seems to be more “ok” to terminate on those grounds. Hence why, in so many parts of the world, it’s ok to terminate a child with Down syndrome up to the point of delivery. DELIVERY. As women, we should be fighting that barbaric practice rather than hiding behind our fears and justifying the “choice.” As women, we should be outraged that we are counseled to deny our own flesh and blood because of gross inaccuracies about what life with Down syndrome is like. That makes my heart hurt. It makes me furious. It guts me because accepting it means accepting that society agrees, by and large, that my son’s life is less valuable than the lives of other “normal” children. That he is not as worthy of life.

And the scarier part? Most of society has no experience with kids like my son to have any business making that call. Think about it. I don’t want a podiatrist performing my open heart surgery. I don’t even want him to advise my surgeon because he likely has limited to no experience with cardiology. That’s why I share so much about our life, about my journey as the parent of a child with a disability. Because I don’t want the information to come from those with no experience. Those of us living this life day in and day out–-we should have the loudest voices. And our voices should be taken seriously. Other families should know what it’s really like to live this life-–not what everyone is afraid it’s like, but what it’s reallylike.

*******

As it turns out, the woman that wrote the article is running a half-marathon to raise money for the organization that supported her when she chose to terminate. She wants to open up dialogue about how, when given a poor prognosis, choosing to end your child’s life is the kind thing to do. She wants to normalize her choice.

When I heard this, I couldn’t help but laugh. This woman might be running a half-marathon, but I’m running a full marathon. This weekend. All 26.2 miles. I’m running this marathon–my first–as a Children’s Champion raising money for Nationwide Children’s Hospital in Columbus, Ohio. I’m raising money in honor of all the babies with a grim prognosis that survived because of the care they received at Nationwide Children’s. And I’m raising money in honor of the kids that didn’t survive, for whatever reason, but fought a good fight and passed on with dignity thanks to the care they received there. I’m a Cincinnati local, but our children’s hospital (one of the best in the world, I might add, and where my son’s life was saved) doesn’t have a marathon, so I chose the next best thing. I’m currently nursing an injury from the half-marathon I ran this past Saturday, but I will cross that finish line at the Columbus marathon if I have to hop on one leg!

At this point, it’s not just about running a marathon. No, now it’s symbolic. My running and fundraising efforts are a reflection of all that can go right when finding out your child has a disability. I want the world to know that this life–-this life with Down syndrome–-is nothing to fear. I registered for this event in July; I’m not raising money to compete with this other woman. But I will say this: when it comes to saving children and protecting vulnerable populations of people (like those with Down syndrome), I think I’ve got the more merciful perspective.

I’m running for life.

*******

To support my efforts as a Nationwide Children’s Hospital Children’s Champion, visit my personal fundraising page here.

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the toddler years – naps

I carry him up the steps while he clutches my neck and keeps his little legs wrapped tightly around my middle. He lets go with one hand, pops his thumb in his mouth, and rests his head against my chest as I climb. He could ascend the stairs himself, but he is sleepy. And he is my younger baby–and likely my last baby–and I know I won’t be able to carry him up the steps like this forever. We grab his blanket and his monkey–“Key!” he exclaims enthusiastically–and we make our way to my bedroom. I toss him gently on my bed so that he bounces–just barely–and lands comfortably among the pillows. He smiles at such fun. He clutches his blanket and monkey, rolls onto his belly, tucks his legs under his little body, and points his diapered bottom at the ceiling. He turns his head away from me slyly, returns his thumb to his mouth, closes his eyes, and pretends to snore. He giggles, then looks at me. I laugh too and he does it again.

I roll over and wait. I know what’s coming. He does this every time. I brace myself by holding my breath and closing my eyes. Within seconds, like clockwork, I take an elbow to the kidney, then a knee, as he crawls over me to see if I’m awake. He assesses my level of consciousness to determine how much he might get away with this time. I open one eye just enough to see what he’s doing, but I can already feel him creeping closer to my face. He wants to be sure. When he’s satisfied that I’m asleep, he crawls back over me to the other side of the bed. He doesn’t yet understand that crawling over someone is a good way to wake them up. This makes me smile.

He slides to the edge of the bed and dares to make his escape. I turn just in time to catch him jumping off, and he knows he’s busted. We both laugh. He tries to evade capture, but it’s no use–I snatch him up and smother him with kisses as we get back into bed. He needs to take a nap and I will win this battle. I try again, rolling over so I’m not facing him because I know he won’t go to sleep if he can see my face. He’ll just try to play. No matter–he crawls up to my head this time, grabs it, and attempts to turn it toward him. I am forced to roll over and face him. He places a chubby little hand on either side of my face and turns my head one way, then another. He shoves a finger in my nose, then another in my eye, forcing it open. He turns my head the other way sharply, catching me a little off guard, and he laughs. He does this a couple more times before I start laughing too. Each time he does this, he studies my face, waiting for my reaction. He wants my approval. He wants me to laugh. He is proud to be funny–he loves being the family comedian. He brushes my hair from my eyes.

He snuggles up to me and rests on my chest. I’m rubbing his hair. He, of course, is sucking his thumb. Again. He is so very sweet, and I think about how quickly he will grow, how it won’t be long until snuggling with his mom is a potentially reputation-ruining offense. The moment is fleeting. He snaps up and tries again to make a getaway. I’ve lost this battle. He is not going to sleep. And actually, I’m ok with that.

He makes his way to the door and knocks. He tries to reach the doorknob and knocks again. I follow and open the door for him. He walks to the steps because he wants to join his sister downstairs. He adores her. His sun rises and sets with her. He grips the banister and begins to maneuver down the steps standing up. This is big boy stuff. He refuses to go down the steps on his rear, and he has paid for his determination in the currency of bumps and bruises–he’s tumbled down these steps more than once trying to be so independent. Each time has shaken me to the core. His cries tear me apart. For a moment, I flash back to just a few days ago when he fell last, and I’m reminded that he’s not exactly like other almost-three-year-olds. I think about my niece–about how she is just a few months older than he is, about how she is potty trained and speaks in complete sentences. It stings for a second. I acknowledge the sting, and I move on. I will not live in this place of fear or grief or regret. My heart is much too full for that. Besides, I’m not sorry my child has Down syndrome.

I go back to celebrating him for where and who he is now. His worth isn’t defined by milestones, and he isn’t less valuable because he needs some extra time. I see him learning every single day. I watch his eyes light up with each new discovery. I delight in his facial expressions, and I can see his wheels turning as he processes the bombardment of information all around him. He is learning. He is growing. He is capable. He is smart. He calls downstairs to his sister. I hear her running to him, and in seconds, she is up the stairs. He squeals excitedly and leans into her. She opens her arms and embraces him. They make their way downstairs and I feel peaceful. This life isn’t scary. It isn’t tragic. It’s wonderful and hard and worth it. So worth it. He has a purpose. He is meant to teach the rest of us patience and tolerance and unconditional love. I can feel it in my bones. This boy. This precious boy. He matters.

I worry sometimes that he is growing up in a world where the number of babies born with Down syndrome is decreasing at a troublesome rate. I worry because we accept disability as a reason to abandon one’s post as a parent. I worry because we live in a society that believes the birth of a child with Down syndrome is cause for an apology. And I worry that others won’t see that he’s a human being, worthy of dignity simply by virtue of being human. I look at his blond hair and bright blue eyes. I take in his smile and I can’t imagine how our family ever got along without him. He watched his sister and dad walk out the door today without him and he covered his face and sobbed. He has feelings like we all do. He is not simple. Not at all. And his existence is part of a divine series of life-affirming events. He saved me, this child. He still saves me. While I do not know what the future holds for him, I know this much is true: before he was born, he was wanted; after his diagnosis, he was wanted; and –without a doubt–he is loved. Immensely. And I hope he knows that forever.

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Almost.

Hell of a summer it’s been for us. Both good and bad. The paradox of the-hell-of-a-good-summer and hell-of-a-bad-summer has weighed on my mind for most of the last 3 months. I have a different post about this prepared and ready to be published, but I haven’t been brave enough to share it yet.

What I am brave enough to share right now is that once there was a man and a woman, and for 8 years they loved each other the best way they knew how. And it almost wasn’t good enough. Almost.

They shared many laughs and tears and burdens and blessings. They grew up and they fell apart. They argued. And argued. And argued some more. And sometimes they said really mean things and forgot that they were supposed to cherish each other. They forgot to be patient. They forgot to be humble.

In those 8 years, they wrote love notes and planned surprise dates. They took care of each other in some of their darkest moments. They traveled, they dreamed. Sometimes they stayed up all night for strife. And sometimes they stayed up all night for love. Three times they made life together. Twice those babies were born. Beautiful, precious babies, born of a flawed but fierce love. They made a family. They built a life. It was never perfect. But it was theirs

I lie here tonight, cradled in the crook of my husband’s arm. He falls asleep quickly and I hear his breathing change. It slows and then his gentle breaths give way to gentle snores and I smile. He is so familiar.

I breathe him in. That smell that left me intoxicated when we were new to each other. That mix of soap and sweat and him. That smell I love. And I realize, in this moment, that once again I am drunk on his love. I smile again because this is also familiar. And I realize he is comfort and safety and home and love.

In the dim light, I watch his chest rise and fall with each breath. I trace his smooth skin with my fingers. I think about how much I love this man. How much I’ve always loved this man. This man who trusted me with his wounded and broken heart all those years ago. This man who let himself love me in spite of his fears. This man who coached me through childbirth twice, and delivered our daughter, and nursed my crumpled body and broken soul when we lost a pregnancy. This man who never once batted an eye about our son’s diagnosis and who takes extra time with our daughter for the little things because he knows the little things add up to be the big things. This man who works himself to the bone to take care of us. This man who is so familiar to me, who loves me more than I ever knew. I mouth a quiet prayer. Thank you, God, for this man. Thank you for teaching us to love each other better…

For a while, we got lost in life. And our best love almost wasn’t good enough. Almost.

…But tonight, he is here. We are here. A little battered, a little broken, but here. We are healing and growing and loving. We are doing better for each other and for our family. And I think, this is marriage. It’s hard and brutal and it sure can break you. But it’s also beautiful and precious and sustaining. It’s about so much more than just ourselves. And it’s easy to get lost. So easy. I think how different this could be–how he could be snoring somewhere else, how I could be sleeping alone, and I close my eyes to blink away the tears. I can’t imagine my life without this man.

Once there was a man and a woman. They loved each other the best way they knew how. And it almost wasn’t good enough. Almost.

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On Friends (or thank you)

All my life, I’ve known amazing women. From my great-grandmothers–whom I’ve mostly gotten to know more from family stories than from my own time with them–to my grandmothers, and, of course, my mother. I’ve been surrounded by friends that are equally amazing women. My earliest childhood friends have grown up to be women I am proud I once knew (or still know, if Facebook can define those relationships these days). 🙂 My friends from high school are still the ones that know me best and love me anyway–an impressive feat (just ask my husband). And when I went to college, I was literally surrounded by amazing women, a handful of whom I count among my nearest and dearest. Of course, I met some impressive souls in graduate school and at every. single. job. i’ve. ever. had. AMAZING women. My lifelong friends. My best friends.

I think, as an adult, you kind of get to a point when you’re so comfortable with your relationships–friendships included–that it seems that all the bonds have been forged. You don’t think much about meeting your next–or should I say newest–best friends when you already have so many it feels like your heart could explode.

And then, you have a child with Down syndrome. And before you know it, women you’ve never seen before are bounding over to you at your first workshop to introduce themselves and insist that even though you aren’t from their side of town you simply must join their playgroup. You will get emails from women you’ve never even heard of, from cities you’ve never even visited, reaching out to you, welcoming you to the club. And women you’ve met only through social media are so excited to finally meet you in person that they announce with the sincerest of enthusiasm how nice it is to finally meet you and that you’re going to be best friends always. And you smile, taking it all in, wondering if having a child with Down syndrome suddenly transports you to a land of perpetual happiness where all the moms are BFFs… 😉 Of course, you’ll meet a few moms (and sometimes dads) here and there that you just aren’t so sure about. And that’s ok too. But the ones you really click with, well, you find out not very far into the journey how those friendships will come to sustain you.

Now, I know it might sound like the hokiest testament to friendship ever. And, in fact, we have laughed at ourselves, and exchanged some oh GAWD, you must have thought I was so weird moments. Sometimes I think we women try harder to impress new friends than new mates. 😉

But in all seriousness, I’m not sure if those women–the ones I described above–will ever really know how much it meant to me to be greeted with such gusto and warmth during what was certainly an unsteady time in my life, especially with Eli’s medical concerns. I didn’t really know then if those women would become part of my circle of best friends, but I knew that I wanted to be part of a group of women so willing to take in a stranger simply because of an extra chromosome in common. I knew these were good women. And now I know they are amazing women.

To say I don’t get out much is an understatement. Well, let me rephrase that–I actually get out quite often. But I’m carting kids around in my booger-smeared sweatpants in need of a haircut (again) and looking haggard and worn (my husband hates my “uniform,” as he calls it, and can’t believe I would ever go in public while wearing sweats…). But in the not-so-distant past, I actually got out. Without kids, without the husband, but with makeup! On this particular day, I wasn’t feeling so great and almost backed out of going. But I didn’t, mostly because I had been looking forward to it for a week. And I’m so glad I went because I left feeling like I needed to tell the whole world what an amazing group of women I’ve been blessed to know thanks to my son. (There’s that amazing word again. I’ve got to get a thesaurus…)

So let me tell you a little something about these women. These are women of grit. They are tough as nails and smart as hell and witty and brilliant and hilarious. They have plastered smiles on their faces while their babies lay in pieces in the NICU. Or after being cut wide open in surgery. Because they’ll be damned if they’ll let their own fear get in the way of comforting their precious babies. They have listened with fierce intensity and resigned stoicism to disappointing reports and bleak diagnoses. They have exercised the restraint of saints by not tearing apart inconsiderate doctors. Or nurses. Or people that stare at restaurants. Or grocery stores. Or pretty much anywhere.

They are beautiful. Benevolent. Tenacious. They are faithful. They are thankful. They don’t stop until every nurse, therapist, surgeon, and specialist that has loved (and helped) their child knows the depth of their gratitude. They are advocates. They will show up at the hospital to keep you company because they know waiting is hard. They will give you advice about marriage and diets and careers, and they will love your children almost as much as they love their own. They will be the first ones you run to when your child gets a bad evaluation. Or a good one. And you will trust them with things you aren’t even sure you trust yourself with. Because they just get it. Like no one else does. Because there is just something about friendships among women. They are like oxygen–necessary for survival. These women will inspire you. They will make you grateful, once again, for this child you never knew you wanted. And you will sit with them, drinking margaritas, laughing so hard you cry and crying so hard you laugh, thinking to yourself damn, these are some extraordinary women.

And you will think about your other friends. The ones from your past. The ones from your past and present. Who sent you cards and music and emails and gifts in an unexpected-but-not-out-of-character rally of support for the new adventure you’ve started. Friends from long ago will be there, and you’ll wonder how they got your address and you’ll think about how many years it’s been since you’ve even talked to them. And you will weep at your sheer dumb luck for meeting all of these remarkable women along the way. And you’ll think damn, these are some incredible women.

You’ll think about those best friends from home, you know–the ones that know you best and love you anyway–and you’ll remember their concern when they didn’t hear from you right away when your child was born. You’ll remember how they celebrated his life, how they did anything they could think to do from afar–sent gifts and food, prayed and had masses dedicated in your son’s honor. You’ll remember the first time they met your son, how excited they were, how they never for a second treated him with anything but love. And you will remember those moments when you face times that are filled with anything but love. You will think about how never in a million years could you live without them, these friends, because they are as much your heart and soul as your children. And they have known your heart and soul longer than almost anyone. And you’ll cry again, this time because you can’t believe how lucky you are to have these women in your life. And you’ll think damn, these are some exceptional women.

You’ll think about your friends from work, the ones that haven’t known you as long but love you as much. Who opened their home on Christmas to take care of your daughter while you were giving birth. Who showed up with bags of clothes and goodies and rallied the troops to make sure you had everything you needed, from a working breast pump to time off work. You’ll think of the ones that sat with you during your son’s first surgery, held your hand, and prayed with you and for you when you were so terrified you couldn’t even stand it. You will shed tears of gratitude once again, unable to make sense of how you–you–keep hitting the jackpot when it comes to friends. And you will think damn, these are some remarkable women.

You will lock these moments up in a vault somewhere deep down because thinking of them will make you emotional–these women were among the first to love your son. They are a part of everything you will always remember about that time.

And your new friends, well, you’ll soon feel like you’ve always known them. Their friendship is different. You share something with them no one else understands. It’s almost like a secret. And you get to walk around smiling because you’ve been let in on it. You. Who would have thought? Certainly not you.

I’m not sure I ever thanked my friends properly for all the love and support when Eli was born and in all the months since. So, thank you. Thank you, friends. Thank you, amazing women. My life is better with you in it.

Anxiety

Sometimes I worry. A lot. I love the Momastery blog, and when Glennon posted the “I can’t keep calm because I have anxiety” shirt, I think I did a fist pump and declared that the shirt had obviously been made for me. Those closest to me have seen my hand-wringing-can’t-sleep-can’t-eat moments when I fret over everything in a vain attempt to somehow control that which is very clearly out of my control. Throughout my life, I have learned how to mask this from most of the rest of the world, and I don’t even think I really understood what was really at work on my mind and body until recently. I could go on and give you more specifics about this, tell you things that would make you either think damn, this lady has issues or ohmygosh, I can relate. But that’s not the point of today’s post. The point of today’s post is to offer a little insight about the type of worries those of in the world of special needs face.

I’m a teacher. A special education teacher. An Intervention Specialist according to my license. My work days are spent in a self-contained classroom teaching a transition-based, employability and independent living skills program to high school students nearing graduation. We focus heavily on post-school outcomes–living and working in the community with minimal or no support, participating as an active member of the community, and improving overall quality of life. When students are referred to me, we consider those things primarily–is she employable and what’s her quality of life likely to be if she doesn’t get some specialized training in this area? Some people no longer believe programs like mine are necessary, that inclusion solves every problem. While that topic deserves a post of its own, let me just say a couple of things: 1) I really really believe in inclusion–it is fundamentally important to everyone, not just those with special needs; 2) I also really really believe in my program, in the idea that inclusion isn’t enough and much like their peers who attend career/technical programs or take college prep classes, my students deserve to participate in a specialized curriculum that is geared toward their unique needs; 3) what I teach is just as important as traditional subjects, and sometimes, for these students more important; 4) a comprehensive, excellent education allows students to access services across the continuum–that a great education can and does strike a healthy balance between the inclusion setting and the resource room setting.

Now, to get on with my point…Our class (along with our sister classes across the hall) schedules regular community outings throughout the school year. This allows students to practice their banking and budgeting skills, learn how to shop for groceries and other items and handle money, participate in recreation and leisure opportunities, and so on. Every time we go into the community, I worry about how my students will be perceived. Did you catch that? I don’t really worry about how my students will behave in the community, about how they will conduct themselves–even my students that have some behavioral issues in the classroom have demonstrated excellent behavior in the community. But I worry that other customers or patrons will be annoyed with them. I worry that store clerks will roll their eyes when we walk in or follow them around, expecting them to make a wrong move at any moment. I worry that other people will simply ignore them, pretend they aren’t there, effectively stripping them of their humanity and dignity by imagining they don’t exist. And I worry that my students will pick up on all of this–they are, after all, sensitive souls, and they do, like the rest of us, experience the normal range of human emotions.

By now, you’re probably thinking this is one paranoid chick. It’s ok because yes, yes I am. And I know that I am because our experience in the community has been overwhelmingly positive. Stores and restaurants have been welcoming and accommodating, customers at the bank and store have waited patiently while my students finished their transactions, sometimes needing coaching from a teacher or staff member. But I do believe the fact we’re there as a group benefits us. It’s much easier to express one’s impatience or disapproval when there’s only one person with a disability holding up the line. It’s much easier to look through them or avoid eye contact when you pass only one person with a disability in the aisle. It’s not so easy when you come upon a large group of these lovely folks, especially when they are protected by the armor of their teachers and paraprofessionals. 🙂

But back to my point. Again. Yesterday, we took our students to the park after our other activities were finished. We were planning on doing a shopping activity in a local mall. Students were going to plan an appropriate outfit for a job interview. But it was a beautiful day. And at this point in the school year, we all needed some sunshine. So we decided the rec/leisure component of our program would trump the practical aspect of our program for the rest of the afternoon and off to the park we went. On the way, I was calm, excited. Not nervous, not worried, like I often sometimes am. And then we pulled into the parking lot. And it was like a switch flipped in my brain. Oh, shit. The park was buzzing with energy–there were kids everywhere, out with their parents and caregivers to enjoy the beautiful weather. And these kids were younger than our students. Much younger. As we got off the bus, I felt my breath catch in my throat. I’ve always been protective of my students, but now–since Eli came along–I’m fiercely protective. It bubbles just under the surface and it doesn’t mean that I coddle my students or “mother” them. And I have to deal with problem behaviors sometimes that make me want to pull my hair out and render me exhausted. But they are still my students. We spend most of the day together. And ultimately, it doesn’t matter what challenges we face together because it’s my job to face those challenges with them. I care about them deeply. The day that I stop caring is the day I know it’s time to move on.

As we walked toward the park and I glanced around at all of the other people, I wondered how they would react to our students. The range of their abilities is great, and in some cases more noticeable than in others. I followed closely behind my students–many of whom headed for the playground–fully expecting to see parents grab their children and whisper to them to stay away from “those kids.” My mind went into overdrive and I imagined conversations might go something like this:
Mom (in a strained whisper, eyes darting wildly around the playground): Kid, come here! See those kids? I want you to stay away from them. Stay out of their way. Don’t go near them.
Kid (in that too loud, too public voice kids so often use): What, Mom? Why? What’s wrong with them?
Mom: Ssshhhhhh! Nevermind. Just stay away!
Kid (getting louder): But, Mom??!!
Mom (straining to hide frustration at this point): Because I said so. And because they’re…different.

Yes, as crazy as it sounds, I really expected to see at least one mom do this as my students stormed the playground. I imagine how our group might have looked–my students, with their young adult bodies, running with the glee of children, thrilled with the prospect of swinging and climbing and playing basketball and basking in the sunshine. Few people would expect them, at first glance, to be so excited about a park and a playground. I think about these things not just for my students, but also for my son. Because the older he gets, the harder it will be to blend in, and the more obvious and pronounced his differences and challenges will become. Babies and small children like my son seem to fare better than adolescents and adults; people have more patience and tolerance because they’re so young, because they’re so cute.

I have to say that my fears yesterday were, ultimately, unfounded. Although I did notice a pair of women exchanging a hushed conversation while they pointed at a few of our kids and looked around, not one mother snatched up her child and left the playground, and not one sitter told her little ones to stay away. We even got a few knowing smiles from people that were either being polite or approved of our outing and the fun our students were having. One young man even invited a group of our young men to join him on the basketball court. Otherwise, for the most part, we were ignored. Which I suppose in our often-socially-awkward-and-contradictory American society, is what a lot of people do to each other at the park.

And that brings me to my next point. Being ignored is another one of my fears. For my students and my son. Because ignoring those who are different–pretending they aren’t there because their differences make us uncomfortable–is a subtle, but no less demeaning, form of discrimination. It is easy to pull off. And it is easy to justify.

“I don’t talk to anyone at the grocery store, so why would I talk to him?”

“That woman doesn’t know any different anyway.”

“Eli won’t even realize he wasn’t invited to your birthday party, honey.”

What gets lost in all of this is that no matter what challenges anyone faces, everyone longs for acceptance. We all want to belong. We all want to be part of the group. And I suppose so many of my anxieties stem from this: that someday, Eli might be the only kid in his class that doesn’t get invited to the birthday party. Someday, one of my students might be the person on the bus that no one wants to sit with. Someday, my son might be the kid that’s picked last for dodgeball or soccer or group work in class. And I promise you, he will know. And he will understand. My students know. And they understand. And it is, and will be, heartbreaking.

I was talking with someone the other day about my son moving up to the next room at his day care. Eli and Evie attend a wonderful day care center. I am thrilled with the care they get there while I’m at work. My children are really loved. Eli’s teachers work on his therapies with him even though they don’t have to, and he was welcomed there with open arms, no questions asked, and with no additional fees. When my kids started there, I was assured that Eli would transition from one classroom to the next with his same-age peers, even if he wasn’t walking, even if he wasn’t talking, even if he wasn’t potty trained. Because the people at his center understand that would be best for Eli. Because they understand that it also benefits the other kids (some people doubt this, but trust me–there is plenty of research proving it…I’ll write about it someday). Because it is the right and loving thing to do. But in this conversation about Eli’s transition to the next class, as other parents were shuffling in and out to get their kids, it hit me very suddenly and very hard: what if the other parents don’t want their kids to be around me son? I faced this as a teacher early in my career, during parent-teacher conferences when a mother literally backed me into a corner and wanted to know why her son had to be in the same class with “those retarded” kids.

And so by my own past experience and my newfound concerns about the future, my fears and anxieties are compounded. And I think I become hypersensitive to things going on around me where something similar could happen. Which is why I worry when we take our students into the community. I worry because I’m not sure how to respond if something like that does happen, and I’m not sure how I would respond. I worry because it will break their hearts. And because it will break my heart.

The truth is, someday, somewhere, someone will be mean to my son. Someone will leave him out or say something ignorant and cruel. There will always be parents that think my son will somehow affect their kids in a negative way. The challenge isn’t simply in how we respond to those situations, but also in teaching my kids to be resilient. And I’m not exactly sure how to do that yet. I see my students, who are acutely aware of being regarded as “other,” and I hear their stories of being excluded or made fun of, and my heart hurts. They don’t deserve to be treated as outcasts. They are no less human than their peers without disabilities. And their disabilities and diagnoses are not their fault.

The fact remains that Eli is different than kids without Down syndrome. He faces challenges many other people will never face. My students are different too. I teach and I write and I share because I long to see the day when that’s ok. It’s ok to have Down syndrome. Or autism. Or a learning disability. Or to be in a wheelchair. Or to be nonverbal. It’s ok. In fact, it’s more than ok. It’s normal, whatever normal is. And it is worth celebrating. People with disabilities are valued members of their families. And they are more frequently being accepted as valued members of their communities. That is reassuring and a sure sign of progress. It obviously doesn’t assuage all of my fears, but it certainly makes me hopeful that the tides are changing.

We parents (and teachers) of children with special needs have a lot of worries sometimes. We have social concerns and medical concerns, fears that get the best of us sometimes. Sometimes, this is a really rough ride. And sometimes we wonder if we’ll survive. Or if our kids will. I can’t take away the medical fears we face–a diagnosis like Down syndrome means there is an increased risk for certain medical complications. Period. (Complications that, I might add, don’t devalue our kids’ lives.) But I can, and I will, continue to try to affect the social aspect. I will continue to write and share, and I hope that you will help to spread the word that kids like my son, kids like my students, deserve to be celebrated.

Have a great weekend! We plan to!

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Sunshine and rainbows

Not all days for our family are easy. Some of them are difficult emotionally, overbooked, overwhelming, or exhausting. Sometimes I can’t wait for my head to hit my pillow at night and sometimes I wish my parents were nearby so I could ship the kids off to their house for a night while I got some sleep. In my own bed. Alone. Without a foot in my face.

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Today is one of those days. One of those overwhelming-too-much-going-on-kids-in-meltdown-mode days. My daughter is in her room crying as I type, deeply upset by the consequences she suffered after a series of unfortunate choices this evening. Apparently, not being allowed to have dessert before dinner is reason enough to tell me that she wants me to die. This is not the kind of talk she hears in this house, although I will take responsibility for participating in an argument a lively discussion and/or using inappropriate colorful language on occasion. But she is only four years old. And where on God’s green earth could she possibly get her hyperbolic dramatic flair??…

Following in his sister’s footsteps is the little brother, who has become very vocal about what he likes and doesn’t like and what he wants to do and doesn’t want to do. And in his own dramatic style, he covers his face when told “no.” As a developmental milestone, this is thrilling–he gets it, he understands what “no” means. As a parent, it is usually adorable. Unless I am already exhausted. Then it’s not so adorable.

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Ok, it’s still pretty adorable, but you know what I mean.

So today I’m exhausted. I can feel my patience wearing thin and my anxiety building. We were out the door before 7am and we got home after 6pm. After work, I took Eli to physical therapy while my sister-in-law took Evie to dance (thank you, Sara!!). I made dinner for the kids, swept the kitchen floor, packed lunches for tomorrow, put out the fires unique to preschoolers and babies, bathed my darling children, earned the rank of worst mom ever (according to my daughter), tucked in the kids, and collapsed onto my bed where I am now hiding from all the other things that demand my attention.

It feels like there are just so many. My kitchen floor desperately needs to be mopped and my living room and dining room need to be vacuumed. There are mounds of laundry to wash and almost as much clean laundry to put away. There are bills waiting to be paid and taxes waiting to be filed. I need to finish cleaning up from dinner and find something to eat myself. The dogs are ready to come in and they’re probably hungry, and I’ll have to keep my eye on them so they don’t crap in the house 🙂 (they seem to be fond of doing that when my husband isn’t home). There are still things to carry in from my car, I haven’t worked out yet today, and there is plenty of work I could be doing from home to catch up.

But I’m not doing any of those things. At least not at the moment. In a few minutes, I will let the dogs back in and make sure they are taken care of. Spoiled even. In a few minutes, I will finish cleaning up from dinner, think about folding some laundry, and make plans to mop the floor. Tomorrow. But now…well, now I want to take a few more minutes to reflect on my day…

I started this blog to be transparent. To share our journey. To document what it’s like to have a child with special needs. And I’ve just shared with you the nuances of a less-than-perfect day. I’ve admitted that I’m tired and anxious and cranky. I’m admitting that there aren’t enough hours in the day to accomplish everything I need to do. And now I want to be very clear about something else: it’s not because of Down syndrome. It is simply because life is hard sometimes. For everyone.

My daughter would be just as feisty if her brother had been born without Down syndrome. If my son didn’t have Down syndrome, my kitchen floor would still need to be mopped and the laundry would still be piling up and I would still insist that my children eat their dinner before their dessert. Yes, without Down syndrome, I wouldn’t have to spend time at therapy, but make no mistake–there would be something else to fill that time. Because that’s just life. I’ve been busy my whole life. The only thing that’s different now is that I have to shift my focus to my children from myself. And as a parent, I would have to do that anyway, even if my son didn’t have Down syndrome.

The truth is, I enjoy taking Eli to therapy. It’s exciting to see him progressing so well. And I enjoy watching my daughter dance. It’s fun to see her pour all that energy into something constructive. I certainly don’t enjoy mopping or doing laundry. I don’t enjoy cleaning up after the dogs or washing dishes or being exhausted. But even on these long days, these hard days, these imperfect messy days, I still love my life. And I still wouldn’t change a thing about Eli, including his diagnosis. I wouldn’t even dream of trading these days for easier therapy-free days. Because these are our days. They are our moments. And they are all at once beautiful and frustrating, exhausting and exhilarating. This might not have been the life I would have chosen for myself, had I been given a choice. But I’m so glad it’s the life that was chosen for me.

Like any other family, we face our challenges. It’s not all sunshine and rainbows. But life never is. And that’s ok. It’s really ok.

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Just look at them–of course it’s ok.

That’s “retarded.”

In the last few days, an interesting discussion about the term “retard” or “retarded” has cropped up on a Facebook page I follow. In particular, this conversation has been about how, as parents, we respond to it. I’ve learned that feelings on this are as different as people are. For my part, having been in the field of special education in one capacity or another for many years, this is something that hits particularly close to home for me. As the new parent of a child with Down syndrome, it hits even closer. I’ve read about, researched, and discussed this issue more times than I can remember. I’ve spent the better part of the past 7 years as a fierce advocate for disability rights in the public school classrooms in which I teach. Arguably, some might say my master’s degree is in “retard studies.” No matter–I love the people I teach, and I love my son.

This morning, I read an excellent article about Down syndrome, and although it was not about the “r” word directly, it did include some nuanced information that certainly applies to the “retard” discussion. I was especially taken with this statement, and I made an immediate connection to the aforementioned Facebook discussion: “…it is perverse to assert that the appropriate treatment for this form of suffering is that the stigmatised rather than the stigmatisers are the people who should be made to change their fundamental identity.” I agree emphatically–perverse is an excellent way to describe the idea that the stigmatized should change rather than those doing the stigmatizing.

Earlier, I used the term “fierce” to describe my advocacy style. That might seem harsh. It might sound unnecessary. And I will tell you that for the most part, public schools are great places. But I will also tell you that disability rights are civil rights. They are human rights. And when it comes to stigmatizing my students–and now, my child–I respond fiercely if I have to. Sometimes, I’m the only advocate my students have, and nothing less than fierce will do. I see on a regular basis how deflated my students become when called “the retards.” Having Eli has, of course, made this an even more poignant issue, as he will likely be on the receiving end of that one day. Does my son have delays and challenges, including cognitive ones? Yes. Is he a “retard?” No. The same applies to my students.

Once, when a student walked by my class, pointed, and shouted, “It’s the retard class!” I invited him in and asked him if he would like to say that to their faces. This was long before Eli was born, and some of my friends might remember when I posted about this a few years ago. This young man was stunned by my reaction, but not quite as stunned as my students in first hearing his taunts. I will never forget ushering him into my classroom and telling him to look at them and call them “retards” to their faces. He froze. But my students didn’t. In what was a very proud moment for me as a teacher, they said exactly what was on their minds. They told him what they thought, how they felt–they advocated for themselves, and that is something we work so hard on in the program I teach. I know my students in a way many others in our society wouldn’t care to know them. Yes, I know what they look like in terms of percentile ranks and norm-referenced assessments. But I also know them as individuals. I spend all day with these young people. I get to know what makes them tick, what makes them who they are at their core, what makes them wonderful and lovable and amazing. And in what is perhaps one of the grandest paradoxes I’ve ever known, it’s all wrapped up, inexplicably, in what also makes them “retarded.” But they are not defined by that either. Sigh. There are so many layers.

And so, when the word “retard” is thrown around as an insult, I cringe. I shudder. I get angry. Because my students are not bad because of their disabilities. Because my son is not bad and because Down syndrome is not bad. But every time someone uses that term to put someone or something down, it implies that they are, that he is. And so many people have worked for a really long time to end the stigmatization.

In my job, I work very closely with families too. And I want to share a story related to me just a couple of days ago by a parent I really respect and look to as a mentor as I learn to navigate these waters now as a parent. This woman has a son with a disability. He is an adult now and he does very well for himself, working competitively in the community. He enjoys his job, and I know his parents are quite proud of the young man he’s become. On one particular afternoon, his mother arrived at his place of business because she needed to purchase a few items, items that would need to be loaded into her vehicle. As it happened, that was her son’s job that day. She maintained an unassuming position in the line of vehicles that day, not wanting to give away to anyone else that the employee’s mother was waiting for the same service the other patrons were there for. It was a busy day. Her son was working hard, loading cars as quickly as he could. But, inevitably, as folks in line tend to do, someone grew impatient. In this case, very impatient. A woman, tired of waiting, got out of her car, turned to the other customers (obviously unaware his mother was in line), and yelled, “I hope you’re not in a hurry. They’ve got some retarded kid working and he’s not moving very fast.”

This is why I am passionate about advocating for my students and for my son. This is why I get fierce. This is why I say there is no accounting for ignorance. This is why I say, whether or not his mother had been in line, this type of discriminatory tongue-wagging is simply not ok. It’s not ok, people. It’s not ok. Up to that point, this young man was just that–a young man doing his job. Some people might have noticed his disability, but it wasn’t about his disability. Once this woman opened her mouth, it was all about his disability–he was no longer just a young man doing his job; he was a young man with a disability doing his job. Even more than that, he was the “retarded” young man doing his job. I read a comment from another mom that really made sense–we don’t want every conversation about our child to be about our child’s disability. Exactly. That’s all the more reason for us to take a stand against discriminatory speech–it focuses so heavily on the disability when we know, without a doubt, that our kids, that my students, that persons with disabilities are so much more than their disabilities. And it is never ever ever the responsibility for those that are stigmatized to make up for the shortcomings of those doing the stigmatizing. But it is ok for us to take a stand. As parents. As teachers. As friends and allies of those with disabilities. As those who know that differently-abled doesn’t mean bad. Words can hurt or words can heal. Enough is enough. Our kids deserve better.