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.

On milestones

So not that long ago, I was having one of those “poor me” moments. Well, that’s not quite right. It was more like a “poor Eli” moment. I wasn’t able to go to Eli’s evaluation at the Thomas Center (Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, that is) in October or September (it all runs together now), so I had only my husband’s interpretation to go by. He doesn’t speak therapy (as in physical, occupational, and speech) language, so I was quite frustrated at my lack of understanding about the appointment and that I was left to reinterpret his interpretations of their interpretations. Geesh. My interpretations of his interpretations of their interpretations had me worried for my son. And confused. Because how could it be possible that when I look at him, I see only perfection and PURE JOY, but when these people look at him they see percentile ranks and deficits and challenges? And then I got the written report in the mail. Finally, I could see their interpretations in a language I speak. Finally, I would not have to decipher husband-language to figure out how my son was developing. It would have been less painful for someone to hold me back while someone else, with very large biceps and a powerful fist, punched me in the gut over and over again. It was about what my interpretations of his interpretations of their interpretations said it would be. Sometimes I hate being right. I shed a few tears, texted and emailed a few of my fellow Ds moms, and posted on a couple of message boards. I don’t disagree with the report, I explained. (Shit, I was hoping to disagree with the report.) It’s just so different being on the receiving end of one of these. (You know, since usually I’m sharing my reports with parents.) I picked myself up with the support of those Ds moms I’ve come to rely on, and decided to carry on for Eli’s sake. Because when I look at him, he is still that perfection and pure joy that he’s always been to me, no matter the percentile rank of his expressive language skills. And I thought to myself that he started nursing finally at 4 months old. Four. Months. Old. If he could learn to breastfeed at 4 months old, he can do anything. He might be 4 months behind, but eventually we get to a point in life when 4 months is no big deal. And so we carried on.

And then, as my son is apt to do, he blew me out of the water. Out of the water. He decided to remind me, in his way, just how capable he is. Do you know what he did? Can you guess? He started signing spontaneously. He’d been able to mimic a few signs, but he had never signed without being prompted. But then, one day, he started signing on his own and in context. He signed more and milk and mama. He signed eat and all done (or all finished, if you prefer). He signed like he’s always been signing. Like he’s signed since birth. I jumped and screamed and scared the crap out of him with my cheering. And then I slowed down. What if he doesn’t know what these signs mean? I remained cautiously optimistic. And then he started signing at school. His teachers started asking me what different signs meant. One day, when I picked him up, his teacher had to wake him up from his nap. He started signing for milk right away. She didn’t think he could possibly want milk–he’d just had some before his nap. But he kept signing it, so she gave him a sippy cup. And he sucked it down. Sucked. It. Down. He signs milk when he’s eating and wants a drink, when he’s having a sippy cup, and when I’m nursing him. This kid knows what he’s signing. Another day, I walked out of the living room, leaving him to play for a few minutes by himself. My husband walked into the room before I returned, and he found Eli signing mama. He continued to sign for me until I came back into the room. His teachers have also reported that he signs for me sometimes during the school day. Bless my sweet boy’s heart, he loves his mommy. He signs eat all. day. long. according to one teacher. 🙂 He takes after me too. If there is one thing I know now, it’s that my little man has the cognitive capacity to “get it.” And he will get it in his own time. And when he does, he’ll make me feel silly for ever worrying.

Last week, Eli had his first regularly-scheduled physical therapy appointment. Once again, he surpassed expectations. Mine and the therapist’s. He did some things she didn’t think he would be able to do yet, especially after that evaluation just a few weeks earlier. I suppose he showed us that a lot can happen in a few weeks. He is such a fighter. And (did I mention?) pure joy.

I want the world to know that managing all of this–the evaluations, the therapies, the challenges and delays–is, well, manageable. I want families just getting a diagnosis to know that they can do it. That it’s really not a big deal, even if it sounds like it is. I want families getting a prenatal diagnosis to know that they can do this, that their child’s life will be so worth it. That having a child with Down syndrome is so worth it. There are challenges–that is an undeniable fact of parenting a child with a disability. But that is also an indisputable fact of parenting a child without a disability. I think about how my daughter developed so normally. Ahead of the curve, even. I think about taking her crawling and talking and nursing for granted. How they just happened, without much thought or regard for the complicated mental processes needed to perform such tasks. And then I think about my son. How purposeful we’ve had to be about each milestone. How focused. How determined. He has to work so much harder to reach the same milestones, to do the things that babies without Down syndrome do so easily. But when he does it, the feeling of victory is so sweet. I appreciate it in a much deeper and more profound way. It means more to me now because I actually have to think about it. And it makes me think back on my daughter’s milestones and appreciate those more too.

Sometimes I get overwhelmed with this life. Sometimes I worry. But I got overwhelmed and I worried before Eli was born. I wouldn’t change it. We’re almost one year in now and I would not change it. I love my son. Just the way he is. Because of who he is. Not in spite of it. For video clips from Eli’s physical therapy at home, find us on Facebook. (I was going to upload them here, but WordPress wants $60.)

It’s Been a While

Since my last post in August, I’ve started five new posts (not including this one). I’ve finished zero. It’s November 1st, and I’ve fallen asleep or abandoned every new post in the past few months. If there is one lesson the universe wants to be sure I know, it’s that I’m not Superwoman and I am not capable of doing everything. For my part, I have a really hard time accepting this. I know it. I admit it. But I don’t accept it very readily.

Over the last few months, our family has endured another hospitalization and Eli has been stay-home-from-school sick at least 3 times. (By school, I mean daycare.) The afternoon I picked him up to find out that he’d had three seizures was, thinking back on it, pretty surreal. I walked into his classroom expecting to take my kids to a friend’s house for a low-key evening and I left trying to keep my wits about me while rushing my son–with my daughter in tow–to the CCHMC emergency room. I had phone calls to make and I didn’t want to panic. Oh, and there was that whole driving thing. At rush hour. In a city that has some of the worst drivers anywhere. My husband rushed from the firehouse to meet us.

That evening in the ED was a long one. We entertained our hungry preschooler (who just didn’t understand why we had to go back to “Children’s Hostibal”) as best we could and tried to appease her with the wholesome vending machine treats. When my husband finally left with her at 11:00, Eli and I snuggled in together on a gurney. John and Evie headed to the firehouse to retrieve my husband’s things and we met them at home a while later. The hospitalization followed the next week (and thankfully only lasted a couple of days), and my mother came to stay with Evie so John and I could be at the hospital. After being hooked up to monitors for 2 days, Eli was found not to have a seizure disorder (thank God!), and we were sent home. Not sure what was going on, although the neurologists were quick to blame reflux. One of his nurses wasn’t convinced and I captured several of the events on video. Even Eli’s PCP thought they looked like partial complex seizures. But, thankfully, increasing his ranitidine means he hasn’t had any episodes since then. I guess those neurologists are pretty smart after all. How ’bout that? Throw in a stomach virus twice, two double ear infections, and thrush and my little guy had had a rough few months. You’d never know it though–he is so full of light. He was even happy with electrodes on his head.

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During the last few months I’ve taken time off work–even though I exhausted my sick time last year–to take care of my kids when the bugs hit. My husband has done the same. It’s meant going without overtime pay, and in some cases, going without pay, period, but that doesn’t seem to be so important when your kids aren’t well.

During these months, I’ve wasted countless morning minutes to scrambling for socks for my kids when we have not a minute to spare to get out the door. I’ve done the same thing packing lunches, looking for car keys, and trying to find jackets. In those moments I admonish myself–if I had just put the baskets of clean laundry away, I would have the stupid socks. If I had just packed lunches and planned outfits the night before, like we do most nights, I wouldn’t be in an anxiety-fueled frenzy trying to get my little ones out the door. And it’s hard on them, getting up so early. Bedtime in my house is around 7pm and they get up at 6am. But, of course, there have been too many nights over these past few months where we just didn’t make bedtime. And we paid for it the next morning in the form of preschool meltdowns. Don’t you know that black is an ugly color and preschoolers forces to wear black coats will cry because black is not pink? And of course having to brush your teeth before putting on your shoes is nothing short of tragic. Pick your battles, Stephanie, pick your battles. During these last few months, I’ve threatened to take my daughter to school in her pajamas or without shoes or with “stinky teeth.” I’ve hurried her along while her brother gets carted around happily, not bothered by much unless he’s hungry. I’ve felt guilty all the while knowing that I shouldn’t be hurrying my kids so much, wondering how I can possibly slow down with them and enjoy them for those few minutes we have together in the morning before we go out to take on the world. Yes, if I had just put away that laundry. And packed those lunches the night before.

During these last few months, I’ve started Weight Watchers. Again. And failed. Again. Struggled. Again. And tries again. Again. I’ve spent a lot of time trying to figure out how it is that I’ve managed some pretty impressive weight loss feats in the past, but this time is so impossible. I’ve determined that damn it, I’m hungry. And stressed. And carrots will never satisfy that lethal combination. At least not for me. I’ve tried to build more exercise into my routine and I’ve failed at that too. I get up at 4am with gusto ready to work out. Once. And then sleep trumps exercise every time. I make it to the gym regularly for a few weeks and then a kid gets sick–man down, man down!–or those 7 o’clock bedtimes creep up on us (and so do the morning meltdowns) and, once again, sleep trumps exercise. And there’s that whole getting-home-at-5-and-squeezing-in-family-dinner-and-time-to-play-with-the-kids thing. Yeah, that’s pretty important to me too, especially after being away from them all day. And don’t forget the ready-to-walk-out-the-door-and-realizing-you-must-nurse-baby-now problem. Things at the gym could get really messy if you don’t. And bouncing up and down during exercise class with a chest full of milk is not for the faint of heart.

During the last few months, I’ve had arguments with my husband, and all at once resented and enjoyed the fact that he is working almost enough hours to have 2 full-time jobs. (He has 1 full-time and 3 part-time jobs–such is the life of a firefighter, I guess…) Each month, more of our money has gone to child care than to our mortgage, and I’ve had to rework the budget (more than once) to make things happen. In these few months, we squeezed in 2 date nights, and both ended in our passing out, exhausted from the week, drooling on our pillows. Sleep also trumps nooky.

During these last few months, I’ve quit bringing work home with me because it just isn’t fair to my kids to keep working in the evening after being away from them all day. I’ve brainstormed ways to stay at home, especially with so much money in child care expenses, but we just haven’t been able to get that creative with the budget yet. I’ve had days these last few months that I’ve loved my job, and days that I’ve had some real concerns about the state of education–especially special education–and what that will mean for my kids, especially Eli. (And let me tell you, my concerns have nothing to do with the teachers.) I’ve made late-night runs to the pharmacy to pick up those meds I forgot, dragged a couple of sleepy kids to the craft store to grab t-shirts (at the last minute) for the craft project at school, and made some dinners that really sucked. I’ve gone to work with wet hair (sleep trumps beauty) and mismatched sock, and accidentally sipped my coffee from a mug with coagulated milk in the bottom (that was not awesome). I’ve cleaned my house only to let the clean laundry pile up, or put away the laundry to the detriment of the dishes. I’ve scrubbed the shower while I was in it and cleaned the rest of the bathroom while my daughter played in the bubbles during bath time. At least I was in the room with her, right?

Yes, it’s been a chaotic few months. I’ve had to admit defeat on many levels. I’ve had to stop thinking of my life in terms of “If so-and-so saw my house right now, he/she would be mortified,” and “I don’t want to run into anyone I haven’t seen in a while because I’m embarrassed I’m still carrying the baby weight.” These things get to me. They really do. And I have such a hard time reconciling the perfectionist in me with the me that has a messy house sometimes and the me that hasn’t made losing the baby weight a priority and the me that jets out the door with wet hair.

And over these last few months, I have been gentler on myself than I’ve ever been. I’ve snapped out of my hard-on-myself funks more easily than I have in the past, and I’ve been a little less inclined to believe that my self-worth is determined by the degree of wetness of my hair. I’m not a failure of a woman for choosing sleep over eyeliner, and I’m not a failure of a mother for not batting an eye when my kid eats a stale cracker off the floor (how did that get there, anyway??). I have wanted to prove for so long that I can be everything and do everything and do it well. I’ve created so many contingencies for myself–it doesn’t matter that I’m a good teacher because I’m a fat good teacher. It doesn’t matter that I’m a good mom for playing with my kids in the evening because I’m still the mom with the piles of laundry to finish, dishes to do, and toys on the floor. It doesn’t matter that I’m a good wife because…well, to be honest, I’m not sure where I stand on the “good spouse scale.” But you get the point. For most of my life, I’ve set up these unrealistic, unhealthy, and anxiety-inducing expectations for myself. The funny thing is that I’ve never expected any other woman to live up to my standards. But for myself, I have this impossible set of rules. But during these last few months, I’ve started to let some of that go. I credit my kids–and Down syndrome–with that. My kids have taught me the value of patience, but not just with them. I don’t want to project my unhealthy habits on them, so I’ve worked hard to fake it. I walk a fine line between teaching my daughter that the way you present yourself does matter but you aren’t a slob if you have a few mornings without perfectly styled hair. I never want my kids to obsess over their bodies the way I have mine (that’s a post in itself), so I’ve learned to be a little gentler with myself. I walk a fine line here between teaching my kids to be healthy–to maintain a healthy weight and healthy habits–and teaching them to wrap their self-worth up in it.

I see things a differently because of my kids. I see things differently because of Down syndrome. Down syndrome has taken every experience, every emotion, and made them just a little more poignant. Patience has become a little more important. Acceptance–self-acceptance–has become a priority. I want my son, who has Down syndrome, to value himself just the way he is. I want my daughter, who doesn’t have Down syndrome, to value herself just the way she is. I have to start by valuing myself. Right here. Right now. Just the way I am. No apologies. No excuses. I have to value myself while also working to better myself. But instead of focusing only on the end result, I’m learning to value the journey.

There is order in chaos, right? So somewhere, in this hectic life of mine, things make sense. 🙂 I’m working on that. In the meantime, here are a few of my favorite snapshots from the last few months.

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