Archive | October, 2012

Down Syndrome Awareness: Selling Down Syndrome

During Down Syndrome Awareness Month, blogs and Facebook posts by parents of kids with Down syndrome are bountiful with praises of those with Down syndrome. We boast about the achievements and accomplishments of our children, we write about all that they teach us and how much they enrich our lives, and generally focus on the most positive aspects of our kids who sport that extra something special.

I was going to do the same thing.

I’ve been drafting a blog post in my head for about a week, titled either “All About Finn” or “What I Want You To Know About Finn” (I hadn’t settled on one or the other yet). In my head, I couldn’t get past making a list of all of his positive qualities. You know, to raise awareness. Of how great my kid with Down syndrome is!

I finally realized tonight when I was in the shower (which is when I do some of my very best thinking) that I couldn’t bring myself to just sit down and write the damn post. Wanna know why? Because it feels like I’m trying to sell Down syndrome to you. It feels like I’m trying to sell the world on the idea that, despite the fact that he has this condition, he’s a worthy human being, deserving of respect and kindness.

Here’s the thing: I don’t want to sell you on Finn, or on Down syndrome. Because it should just be a given that he’s a worthy human being, no matter what the state of his chromosomes may be. It should go without saying that he’s deserving of respect and kindness no matter what he’s able to achieve (or not). Because he’s a person. Just like you’re a person, and your kids are people.

In our house, in our family, Finn’s having Down syndrome is neither an extra special blessing nor a curse. It just is. To paraphrase and borrow the words of George Estreich, Down syndrome is just his way of being human. Down syndrome is always present in our house, but its influence ebbs and flows. We often don’t even think about it, and sometimes it’s the subject of a great deal of focus. Sometimes its even the subject of humor. Finn is a blessing because he’s Finn, because he’s our kid, because he’s human – not because of or in spite of his having Down syndrome.

Finn is smart and delayed; he’s happy and often crabby; he’s loving and sometimes annoying; he gives great hugs and throws terrible tantrums. He’s a joy and a challenge. He’s a kid. He’s a son, a brother, a friend, and a student. In other words, he’s a person. And that should need no selling.

On Being Battered

One thing I can tell you about living in a situation of ongoing abuse is that most women on the receiving end won’t admit it or reach out for help – or even emotional support – until they’re ready to do something drastic about it. Like leave. Women will cop to all sorts of other unsavory aspects of their relationships – drinking problems, porn addictions, financial ruin, in-law issues, you name it – but abuse? No. Because the thing is, everyone knows that nobody is going to support staying with a man who’s smacking you around, and once you start talking about it, you better be ready to extricate yourself from the situation.

Here’s something else I can tell you: you don’t really know how you’d deal with a situation until you’re face to face with it. Oh sure, you can sit there and say, “I’d NEVER put up with a man hitting me. The first time he laid a hand on me, I’d be outta there!” It’s very easy to say that – to believe it – when that situation is only hypothetical. When it actually happens, though, it’s a whole different story. You tell yourself all kinds of things to try to rationalize the situation.

I know these things from experience.

I lived with an abusive man for many years. I honestly can’t even remember the first time he laid a hand on me in violence, but there are many, many episodes that I remember, starting before he and I even ever got married. The night of my dad’s funeral may have left the most livid scar on my psyche, but it certainly wasn’t an isolated incident. I look back now and wonder: who was that girl who put up with that?

At this point in my life, all these years later, she’s someone both strange and intimately familiar to me. She’s like someone I knew in a dream.

I know she learned about how relationships work, like most kids do, from watching her own parents, and because of that, violence was nothing new to her. Some of her earliest memories are from toddlerhood: the sounds of shattering glass, flesh impacted by flesh, bodies being shoved into walls, shouting, screaming. I know her mother spent the first half of her life tearing her down, telling her how bad she was, so that when this guy came along and paid her some sweet attention, she ate it up. I know that he represented a way out for her, and she had no idea that she would only be trading one hell for another. I know that he wanted someone to rescue, someone weak and needy so that he could feel big and powerful. I know that for a long time when she grew up, she believed that this was just her lot in life. She wished for something better but didn’t believe it was her due to have something better, and had no idea how to attain something better, anyway. I know she was scared. I know she felt trapped and very, very alone. I know she told herself over and over, “If I could just be a better wife, a better person, he would stop hurting me.”

Part of the method the abusive man uses is emotional warfare. He tears her down to the point where she believes it’s her fault, that she’s brought this all on herself. He used to tell me, “I’m not like this. You bring this out in me. You make me do this to you.” He leads her to believe (because she’s susceptible) that there’s no possibility for a better existence outside of the relationship. The message is, “I hate you because you’re unlovable, but I still love you more than anyone else ever would.” The message is, “Nobody else would put up with you. You’re lucky I do.” The message is, “I hate you because you’re a miserable piece of shit, but you better not ever leave or you’ll be sorry.”

Yes, I was trapped like that for years.

So how did I finally get out?

It’s complicated. But in simple terms, Kevin and Michael were both the impetus for my finally extricating myself. It’s bitter irony that Kevin was one of the reasons I stayed as long as I did; once we had him, I thought about leaving all the time, but I couldn’t bear – absolutely couldn’t bear – the thought of having to share him, to give him up to this horrible man on alternate weekends or whatever the court might come up with. In the end, though, it came down to realizing that it’s one thing to put up with a hellish situation yourself, but to subject your kid to it is a whole other story. There came a night when he was coked up, and he took Kevin and disappeared for an entire night. I was frantic. To this day, I have no idea where he took him or what Kevin was exposed to. He came back the following morning, and I met with a divorce attorney that day, and took Kevin and left the following day.

And Michael came along. And he saw me as a person with value, someone worthy of goodness. It was the first time I began to believe that something else, something better, was possible. It’s probably sad that it took something, someone outside myself to see that, but there you have it.

There are many reasons women stay in abusive relationships: financial dependence, lack of a safety net of available friends and/or family, fear, and not the least, self-esteem. It really all boils down to that, I think. And I think that for anyone who has a daughter, instilling in her a strong sense of self – of self-value, self-esteem – needs to be an absolute priority. By the same token, raising sons into healthy men requires instilling the same positive sense of self, as it is the broken man who will lash out and victimize someone.

I know now that it wasn’t about me, it was about him. I’m as flawed as the next person, but I’m not a worthless piece of shit. He would have abused anyone he ended up with.

It was a hard road to travel, but I got out. And I am thankful.

Life Stories

Several months ago, I finally sat down and did what I had thought about doing for years: I wrote about what I remember as the worst night of my life. Although the night in question happened now almost fourteen years ago, the memories of it have haunted me all this time. It was a devastatingly traumatic night on many levels, and over the years I would flash back on it and be filled with rage and anxiety and shame. There was always a part of me that thought if I could write it out – what happened that night – I could somehow relegate it to the past where it belongs and gain some sense of closure on it. But I was also ambivalent about writing it out because I knew it would force me to relive the events of that night in detail rather than in the snippets that would sometimes flash in and out of my mind’s eye.

When I did write about it finally, it was an emotionally draining process, but in the end, it was cathartic as I had hoped it would be. Reducing it all to paper, so to speak, found a way to take much of its power away. And the memories finally stopped plaguing me. It was a horrible night that happened a long time ago, to a person who only vaguely resembles who I am now.

What I wrote, An Excerpt From the Life of a Battered Wife, seemed to have quite an impact on other people, too. So much so that I decided to submit the piece to a couple of publications with the hope that it might be accepted for publication.

The Sun magazine declined it. They sent me a very nice letter telling me that, while they felt that it was a very well-written piece, they get so many submissions every month that they often have to turn down even very good ones. (Okay, this very well might have been a form letter, but I’ve decided to take it at face value, thank you very much.) About a week later, I received an email from the managing editor of Mamalode telling me that they wanted to publish it. She called it “powerful” and “very moving.” I was elated. I would get paid for this, which seemed like a sort of sweet justice, given the subject matter of the piece.

So for the next week, the managing editor and I worked together on editing the piece. I’ll be honest: the first edited draft she sent me left me feeling pretty deflated. She cut so much out of the original version that it lost much of its punch in my view. But of course, I was biased – I had lived the events, and it was impossible to separate myself from it and look at it objectively. Still, it was interesting, and a little frustrating that she felt so strongly about taking a “less is more” approach. I remember a few months back when I was working on edits to my review of The Shape of the Eye for Literary Mama, and how the editor kept wanting more; “Dig deeper,” she told me. And that was a book review! This piece, on the other hand, is a very personal story that is supposed to have a certain gut-wrenching impact, and the editor wants less. Hmph.

So I pretty much scrapped her edited version and, working from the original, edited it down myself, thinking, okay, if it’s a space issue, I can cut it down without removing the parts that really need to be there (you know, in my completely objective view). She didn’t like it. In fact, she told me very nicely that if I wasn’t happy with the edits she suggested, if I felt that strongly about it, I could decline publication, because they certainly didn’t want to publish anything I wouldn’t be happy with. (I make her sound snippy here; she absolutely wasn’t. She was very kind and respectful.)

So I had a choice to make: forget the whole thing, or make some concessions and accept the fact that a willingness to make concessions is part of the deal if one is going to write for a broader audience than a personal blog. I decided to go with Choice No. 2. It would get my work out there, get me some exposure, and the whole thing is a learning experience as far as writing goes. Right?

So here is the final published version: A Bruised Heart

As it turns out, I will get paid based on the number of unique views – which means if you click on it fifty time because you dig me, it won’t count. But, please, feel free to pass it along to anyone you know who might get something out of it – either literarily (is that a word?) or, you know, as the story it relates to life experiences.

I’m going to write more here, soon, about being a battered wife, because it’s very much a part of my past and therefore has played some role in shaping me, and I think it’s an extremely important social issue that still remains pretty taboo.

Down Syndrome Awareness: A Guest Post by Darla

Just over 3 years ago, at age 44 almost 45, I gave birth to my 8th child, my son, Ashton. During my pregnancy, I had foregone the invasive testing and so I approached my delivery with a sense of fear. See … he was my fourth child born to me after 35. I was aware of people’s attitudes towards me with each birth … they thought I was playing with fire! I heard it often … “You know you’re increasing your chances of having a child with Down syndrome.” I received the message loud and clear that: If I did have a child with Down syndrome after that certain age, I would actually be blamed for wanting a baby beyond 35. To me, the knowing glances when I was grocery shopping would be *almost* the most frightening thing about it, right after having a baby with health problems, and facing the unknown. I was shocked at my own feelings about this. Why DID I let what other people think weigh so heavily? Why DID I feel so much fear about parenting a baby with Down syndrome? Life as I knew it would change forever, right? *Something* bad and unknown would surely befall us, a feeling deep inside me warned. I developed a deep interest in Down syndrome, but nothing medical can possibly replace a true life experience.

As I tried very very hard to understand the brick wall of foreboding … suppressed memories started breaking away from the cement blocks they were tied to … gasping for air making their way to the surface from the ocean of my consciousness. I had known and loved a boy “like that” once. In fact, he was my stepbrother, the son of the mother who raised me, but not him. His name was Anthony James, we called him Tony and he was 2 years younger than I was. Tony was institutionalized before the age of 4. I don’t know exactly when because when my father married my stepmother, I was 6 years old and he was already living in the institution. Can you imagine being given away by your mother to an institution? It was par for the course during that time. I have some of Tony’s baby pictures still and so I know he was with his mother until at least age 2. Tony only came home for holidays and special occasions. To a me as a 6-year-old, Tony’s situation was a puzzle. What happened to Tony to make him as he was? Was it contagious? Why did they give him away? Why does he have to go back there? Are they going to give us away too? At 6 years old, my analysis of Tony was: Tony was a good human and I loved him. He gave very tight hugs. If I was getting reprimanded and cried, Tony cried with me. If I was sent to my room, I could count on him to find me and sit there holding my hand. One of the things he often said was “It’s ok Darla.” (My parents were no picnic) We played with our dog in the backyard, which Tony loved. He was so gentle to animals. He enjoyed lining up Hot Wheels and we’d help him. Tony never wanted to go back to the institution. He cried, held onto us and didn’t want to get into the car. My sister and I also cried. It seemed so wrong to tear him away from his family and it always took a while to shake that horrid feeling after he left. Something very wrong was happening and we knew it. As a side note: My parents were extremely embarrassed of some of the things Tony did things he wouldn’t have done if he had not been institutionalized. When he was really upset, he would sit down and rock and cover his ears. These things to them seemed like the very things society disapproved of, but ironically, they were actually caused by society itself. Because children with Down syndrome were not given a chance to be anything else, their capabilities were limited and thus became like a self-fulfilling prophecy of our society. It took some brave souls who would not be pressured by others … those who would follow their own hearts and parent their children before anyone could see the real potential.

Very early on, I sensed that because of society’s intolerance at that time, my parents were ashamed. Even good-hearted people wanted to sweep the issue under the rug and pretend it never happened. My Stepmother had mosaic Down syndrome but was normal (people … I don’t believe in intrauterine murder … but no matter what those tests show, they can be wrong! ) , she only found this out after Tony was born…after a few miscarriages when they sought a genetic answer to her miscarriages. When my father found out that she had a high chance of having another child with Down syndrome, he had a vasectomy against her wishes. I know this made her feel very defective and it seemed like Tony came home less and less. Having Tony around was a reminder of her own “imperfection” and as well…the imperfection of a society not really ready to let people who were different be a part of it. I once read a poem she wrote about Tony, that I found on her desk when I was around 10 years old which said “You are also a part of this universe … God’s creation … You have a right to be here!” I knew then that she was herself a tortured soul and later I realized that she was, in a way a victim of other people’s opinions. Tony’s being sent away wasn’t only her choice, but something she was expected to do. Sending him away meant rejecting a part of herself. She wanted to reconcile all of these things but they made her a bitter and confused woman. As an adult, I feel so sorry for her. Sad that they told her she should give away her son, sad that she felt so confused about his value and hers as human beings. As children … we felt it all. We could feel the thickness of the air around others, the tenseness, the sadness and the shame, and we knew we had a secret brother.

Many years passed and I did not get to see Tony often, but one Thanksgiving, they brought Tony home. It had been 7 years since I had last seen him and I wondered if he would recognize me as an adult and that 50 pounds I had gained. He did! He came to me and hugged me so tight and said my name and cried. He had missed me too! He then looked at my baby in the carrier and asked “Is this your baby Darla? He is so cute!” as his trembling hand with crooked fingers reached so carefully to pat my son’s head. I just started crying, realizing what this meant to him, his understanding greater than I ever knew. I realized how much we had missed. I took a good look at this now man and I was just so overwhelmed at how wrong it all was … I let him hold my baby. I wondered how different things could have been. I am sad to say that this was nearly the last time I ever got to see Tony. My parents don’t want us to know where he is. When I was certain I knew, I contacted the agency, they told me they could not give me any information … it was against their policies.

When I was pregnant with Ashton, I knew that I might have a child with Down syndrome. Even with my experiences of Tony, I was very very afraid. I wasn’t afraid that I wouldn’t love him, I knew I would. I was afraid of the unknown. My parents had surely been fearful. What was it really like to raise a child with Down syndrome? Could I cope? Was the family forever changed as my parents had made it seem? Would he be born with a heart defect? Would I be guilty of making him that way? Would people look at me and then back at him with that certain knowing look? I would want people to look at my baby and see a child, but maybe they would look at him and imagine something different, something of lesser value, even though I know that my child would have been perfect in my eyes. I wasn’t sure I was strong enough for that scene to be repeated over and over again. That is when I met Lisa on a pregnancy/parenting site …

I started following Finn’s life during my pregnancy in 2009 and I was surprised to see: A cute baby with Down syndrome in a normal family. He was not made from a Down syndrome cookie cutter, he was an individual person with an extra chromosome. Lisa’s honest approach was something very real and not sugar-coated, She had her highs and lows, and when you read it, you knew she was telling the truth … Life really does go on. I was able to see her struggles as she dealt with other people’s limited understanding. I was able to resolve that in my mind. How can they REALLY know what it’s like to love someone with Down syndrome if they’ve never been on the inside? I admit that I was still one of those people who had no idea what to say to someone else who had just given birth to a baby with DS, except “Congratulations on your new baby.” I was able to see what life was like for the whole family. The impact Finn had on his siblings was positive, not negative as is still proposed in the OB GYN offices when discussing prenatal Down syndrome diagnoses who say things like “Will this be fair to your other children?”. I was so proud of her oldest son for standing up to people to defend his brother and educate his peers. Watching Finn grow up over the years was a joyful experience for me … almost a guilty pleasure because I connected it with what *should* have happened for Tony. Watching The Morguesses has helped me to understand the difference between the realities and fallacies of raising a child with Down syndrome. I realized then that many of my feelings were tied to trauma I experienced as a child and fears that I had inherited from my parents.

How many women are as fearful as I was when faced with the possibility of Down syndrome? I think nearly all. What the world needs is to be on the inside, not the outside. I think that when people start realizing that it’s not a lot different from raising any other child, fewer people will have abortions. This is one reason I am thankful for Lisa’s blog … I really believe that you are saving lives when you show that your family is just like any other family! At this point, my husband and I are seriously considering adopting an orphan with Down syndrome. All of my children have “A” names. Wouldn’t it be something if we added an Anthony to our family?

Down Syndrome Awareness: A Guest Post By Caryl Phillips

I never thought much about disabilities beyond feeling sorry for the disabled and their families. I would see a family pushing an obviously handicapped child in a wheelchair and would think to myself, “What a shame to have to live that kind of life.” Or, I would think, “How sad for that family to have to deal with being caregivers for the rest of their lives.” I thought I was being empathetic and sensitive as my mother (certain irony here but that is for another discussion) taught me to be. “Don’t stare,” she would say. “Those people can’t help the way they are. Just be grateful that you are healthy.”

So I grew up and raised my own children with the same set of values. I became a teacher and was sure that I was treating people with disabilities fairly and justly like I had been raised to do. My life had never really been touched by this kind of “horror.” I had “normal” children and grandchildren. My life was fulfilled and I didn’t have to deal with “taking care of someone for the rest of my life.”

Enter the Morguess family. Joey was the first in a long line of Morguesses that would cross the threshold of my first grade classroom. The year he was in my class was the year Finn was born and the family received “the devastating diagnosis” of Down syndrome. I didn’t know Lisa at the time. I just knew she came to pick Joey up from school with a set of twins and their younger sister and an infant secured tightly in a baby sling.

Well, being the baby lover that I am, it did not take long for me to step outside and request a viewing of the package in the sling. I was taken aback. What I saw was a beautiful child but I quickly realized that all was not “normal.” I could tell by his eyes that he probably had Down’s. I just made some generic isn’t he cute comment and moved on, not knowing what else to say. I obviously couldn’t ask if something was “wrong” with the baby because my mother taught me that it was rude to ask. So I kept my mouth shut and silently felt great sadness that this lovely family of “normal” children was now saddled, “for the rest of their lives,” with this disabled child. This was also the year that Michael was diagnosed and treated for stage 3 colon cancer. That story, too, is for another time.

A couple of years later I had Annabelle and Daisy in my class. This is when I became close friends with Lisa. I had been reading her blog over the years, and discovered that she and I had so much in common. We both had rough childhoods with mothers that never should have had children, we were both voracious readers; she invited me to join her book club, and we both adored her children. So now I was on the inside of this family that was so unfortunate to have a handicapped child.

This is what I have learned from having the privilege of being an “insider.” I knew absolutely NOTHING about having a child with a disability. I was embarrassed at how ignorant I was about the subject. I love Lisa’s blog and read it faithfully so I was already learning quite a bit about the real issues involved with raising a child with a disability from all of her blog posts. But the one who really dispelled all of the myths I believed about Down syndrome was Finnian Hendrix Morguess, himself. He is a bright, energetic boy. He is “normal” for him. It is like watching a child develop in slow motion. He meets the milestones but not at the same time as a “typical” child. It is utterly ridiculous to feel sorry for the family. They certainly don’t feel sorry for themselves. Finn is an active, wonderfully adventurous toddler. What is “normal” anyway? Finn is Finn. He is not Down syndrome, he is not a disability, and he definitely is not a burden. He is a son, a brother, a student, and a child who happens to sport an extra chromosome.

As I learned more about the myths of having a family member that is not typical, I began to see that the biggest concern of the family is that others would not see Finn for who he is but instead would see only him as different. Kevin began his assault on the “R” word at the junior high level and I found myself wanting, no needing, to fight this battle as a teacher. Lisa gave me the movie Deedah, which I now show every year in my classroom. Along with the movie, I read the book, Junkyard Wonders, by Patricia Polloco. We have long, long discussions about embracing people’s differences and celebrating every life as necessary and important. The “R” word is a hurtful slur that should never be uttered.

I ended up having the twins for 2 years and now I have Lilah. With any luck, Finn is next!

The point I want to get across to my students is that everyone is different in one way or another. Finn is a person first. All the rest is just what we, as a society, make of it. I love you Morguess family. Thanks for letting me in!

~ Caryl Phillips

Growing Pains

Do you remember being at a certain age, caught in some strange limbo between childhood and adulthood? Do you remember how part of you wanted to hold onto childhood, where suddenly everything seemed safer – but at the same time, part of you was chomping at the bit to get to adulthood and break free of the restraints of being a kid, and reach for all those big dreams you had? Do you remember how confusing some things seemed then – most of all, your own heart? Do you remember how you felt invincible and fragile at the same time? Do you remember how everything seemed monumental, and it felt like your whole life hinged on whether he or she liked you back?

I remember.

And I wouldn’t go back to those years if you paid me.

Now I’m watching my own offspring navigate his way through the mess of teen angst, which seems to have gone into overdrive lately. And you know what? It’s painful, even for me. I’d like to ease it for him, but I know I can’t. I know that these are great learning experiences for him that will in some way shape him as an adult. I know that surviving squabbles with friends, surviving heartbreak, surviving not knowing exactly where you belong, surviving standing up for things you believe in and being shot down – they are all vital parts of growing up. I know that stumbling and falling down, and getting back up fosters maturity and wisdom. I know that, but it still hurts to watch your kid go through it.

And I’m scared to death I’m going to screw this up. Say the wrong thing, misread something, be too distracted when he actually feels like opening up, snap at him too harshly when he’s being moody and difficult.

It all feels like such a delicate balance, such a fine line to walk.

Lilah, too, is going through something. That sweet, good-natured girl I wrote about yesterday has been pretty tearful lately. She has growing pains in her body and in her heart. Her legs sometimes ache so much that she cries, and lately a hundred other things have reduced her to tears. She tells me, “Mommy, I want to go back to preschool,” and “I wish I could stay home with you like I used to, and we could go get smoothies like we used to,” and she sobs, “Sometimes I think about how when I’m a grown-up, you’ll die.” And what can I say? I want to ease it for her, too, but she can’t go back to preschool, she can’t stay home with me like she used to, and someday I am going to die. So I tell her all the great things about being a first-grader, and I promise her that we’ll spend some time together this weekend and we’ll go get smoothies, just me and her. And I tell her that I won’t die for a long, long time. And I hope that I’m not telling her a lie.

Being a kid is hard. Being a parent is hard, too.

Six

I don’t know how it’s possible, but today my baby girl – well, one of them – is six years old. I remember like it was yesterday trying to walk her out, but she stayed put until she was good and ready to make her entrance into the world nine days after her due date. Almost from the moment she was born, she had a certain twinkle in her eye, and Michael and I were convinced that she was trying to smile.

That twinkle has remained, and to this day, she is just a very sweet, good-natured little girl.

One

(I see so much of her in Scarlett!)

Two

Ahhh, those curls were legendary! They’ve tamed now to just a wave.

Three

Four

Five

The chubby cheeks have mostly disappeared, too. She is doted on by everyone older than her in our family, and she dotes on Finn and Scarlett. She’s lost a tooth, is in first grade and is learning to read. She’s growing up.

Happy birthday, sweet Lilah.

If Dental Hygienists Worked in GYN Offices . . .

I went to the dentist this morning for my twice-yearly checkup and cleaning. I hate going to the dentist, I really hate it. I hate it so much that I usually reschedule my appointment numerous times before I suck it up and actually go in. It’s not that I have a lot of dental issues – I actually have a pretty clean, healthy mouth and a good set of chompers. I’ve had my share of cavities in my day, but nothing too traumatic like a root canal or anything. But still, I hate going to the dentist. Possibly more than I hate going to the . . . lady doctor. I don’t enjoy the poking and scraping (um, of my teeth, not my . . . oh, forget it, you know what I mean), but I guess that goes without saying. Who does enjoy that? Mainly I hate it because of the hygienist they always seem to stick me with. I’ve written about her before and refer to her as The Floss Nazi. On the surface, she’s nice enough, but she is one gabby lady. She talks the entire time she’s in there poking and scraping, she never fails to lecture me about flossing and how oral health affects overall health (this, despite the fact that she is seriously overweight – does she not know how that affects overall health?), and she never fails to segue into childrearing advice, despite the fact that she has no children of her own. I’m just going to say it: she annoys the hell out of me.

When I arrive for my appointment and park myself in the waiting room, it always feels like a lottery: which hygienist will I get this time? Ohhhhh, I hope it’s not her! Please don’t let it be her! Then she opens the door and calls me back. Fuck, I lost again.

I’m pretty sure I exuded at least a vague hostility as I sat in the exam chair while she put the bib on me, making me feel like a big, overgrown baby, giving her curt, one-word responses in order to discourage conversation. Just clean my teeth and be quiet, okay? Spare me the lectures, I’ve heard it all a hundred times before. I thought to myself, hoping that maybe my thoughts would transfer to her through the air.

To amuse myself while she cleaned my teeth and blabbered on, I played out an imaginary scene in my head wherein my gynecologist employed her as a gynecological hygienist. It went something like this:

Floss Nazi – er, I mean, Vag Nazi: “So, have you been cleaning regularly?”

Me: “Um, yes, of course.”

VN: “Every day, right? How many times a day?”

Me: “Um, well . . . gosh, that’s kind of personal . . . I shower every day, and you know, the vag is a self-cleaning organ . . .”

VN: “You can never be too careful about these things. I always tell people, vaginal cleanliness goes to overall health. What are you using to clean?”

Me: “Seriously? Uh, I really don’t want to have this conversation.”

VN: “I’m going to give you these products to take home. I want you to use them regularly. Now, I’ll know next time you come in if you’ve been using them. It’s very important.”

Me: “Look, I’ve had this vag for 45 years, I think I know how to take care of it.”

VN: “I went to school for this. I know what I’m talking about. I was just telling my neighbor the other day – she has a vag, too – I was just telling her, ‘You know, once you’ve had a few kids, your vag just isn’t going to be the same as it used to be.’ She really appreciated the advice.”

Me: “You know what? Can we just get this over with?”

VN: “I think we should schedule you for a deep cleaning while we’re at it. If you like, we can give you nitrous oxide for that procedure. But I can promise you this: you’ll feel like a new woman afterwards.”

Me: “Can we be done now? Where are my pants?”

~ **~

Anyway, no cavities!

It’s Not Just the Words, It’s the Attitudes

I’m going to kick off Down Syndrome Awareness Month here by talking about one of the most prevalent and insidious issues concerning the Down syndrome community, and that is language.

I signed onto Facebook this morning and in my newsfeed was this from my friend Dan:

I don’t tend to post much on Facebook about Down Syndrome or disability issues. I post tons of photos and videos of Ozzie, enough to give my friends some insight into what Down Syndrome means for our family, and I don’t really delve much deeper into the subject. But this month is Down Syndrome Awareness Month, and I’ve been thinking I should share something more. This morning, a friend alerted me to an offensive tweet by Ann Coulter. She posted it on Sept. 26. In it, she insinuates that Obama is pandering to the “retarded vote.” And so the stars have aligned – I have my topic. Yes, for my Down Syndrome Awareness Month post, I think I’ll have a go at that fucking bitch.*

Let’s get started by laying out two fundamental truths about the use of the word “retard”:

1. Almost every one of us is guilty of saying it at some point in our lives. Even parents of kids with special needs (although I can guarantee you that every parent of a special needs child stopped saying it when his child was born).

2. It is hurtful and it is wrong.

I know these to be truths, because I have two things that make me an expert. I have ears, and I have a child who has Down Syndrome.

Fundamental Truth #1 sucks, but for whatever reason, the word “retard” has some real staying power. I have come to realize that. I hate the word. I despise the word. But I also know that if I start WWIII every time I hear it, I’m going to miss out on some meaningful relationships with some otherwise great people. So here’s the deal – I can cut the Average Joe some slack for saying the word “retard.” To be clear, I would ask that people not say it, especially in my presence, but I know it’s something people sometimes say without really thinking about it. Disability hasn’t ever really impacted Average Joe’s life. Joe doesn’t have to go to IEP meetings. He doesn’t have to trade emails with the speech therapist. He doesn’t have to buy thousand-dollar foot orthotics or play back the phone message from the heart surgeon five times or install chain locks in his house to keep little Joe Jr. from slipping out and wandering off. Average Joe doesn’t wonder if his child will ever have a girlfriend or a job or even the ability to speak clearly one day. And so, while I detest the use of the word, I tend to give most Average Joes a pass if they slip up and use it. It’s unfortunate, but it happens and it will continue to happen and I can’t make that shitty word disappear from the entire world.

Fundamental Truth #2 sucks, too, because it just does. Some people want to argue that parents like me have thin skin, that we can’t take a joke, that we need to lighten up. I say to these people: fuck you. It is hurtful and it is wrong. If you cannot accept that simple statement, you are guilty of willful ignorance.

So now that we have established the fundamental truths, let’s get back to Ann Coulter’s Twitter post. Here’s what Ann wrote: “Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election.”

Ann is not an Average Joe. Ann Coulter is a celebrity right-wing pundit. She’s the tip of the spear for the seedy underbelly of the Republican Party. She writes books and gives interviews and she does her best to piss off everyone who isn’t white and rich and straight. She falls comfortably within a group of people who should know better. This group includes people who are well educated, and people who are in positions of authority or power. These are people who have been handed the microphone or who have grabbed it for themselves. These are the people who, for whatever reason, have great influence on large groups of people. These people don’t get a free pass when they they fire off hate speech. They don’t get a free pass for tossing around “retard” like a pigskin.

Ann Coulter knows the word “retarded” is hurtful and wrong, and either doesn’t care or has deliberately chosen to use it for its shock value. To Ann, that word is just one more round of ammo – a hollow point – and she smiles as she fires it off. This isn’t the first time, either. Google it and you’ll find several instances of her calling people “retards.” I’m absolutely appalled by this woman’s behavior. And so, Ann Coulter, you fucking bitch, I would kindly ask that you leave my son and others like him out of your tirades from now on. I’m tired of people with special needs being collateral damage in your wicked war of words. For this Down Syndrome Awareness Month, you owe a lot of people a big, fat apology. I’m waiting.

*I apologize to any of my kick-ass feminist friends who take offense to the word “bitch.” It just felt so appropriate in this instance.

Let me just say that I don’t watch FOX News, I can’t stand Ann Coulter (from what I’ve seen of her in interviews on other shows), and I highly doubt she’ll apologize because I don’t think she apologizes for anything. Didn’t she piss off Whoopie Goldberg recently for saying some outrageous things on The View about Blacks, acting as if of course she’s in a position to know what the hell she’s even talking about? And when called on it, she just dances around it, refusing to acknowledge that she’s acting like an ass. I think it’s part of her whole schtick, her brand if you will. She can’t go all soft and compassionate and apologetic! That would ruin her image.

Anyway.

It’s incredibly disheartening to realize that this is a fight we’re still fighting – the one against the R-word(s): “retarded” and “retard.” We as a society have managed to eradicate the use of most other slurs that at one time or another were prevalent; pretty much everybody knows that fag, nigger, spic, and dyke are horribly offensive and hurtful words, and in this day and age, it would not even occur to most people to use those words. And yet “retard” and “retarded” persist and thrive. Why?

I think people with disabilities – and especially cognitive disabilities – represent what most of us fear most: weakness, dependence, lack of autonomy and self-direction. Helplessness. And the things we fear on the deepest level are things we cope with by poking fun at, dehumanizing, and marginalizing. In this way, we put distance between ourselves and that which we fear. It’s okay to make fun of retards! They’re not even real people! They don’t even know what we’re saying! And if we can make it funny, and show that we’re the ones in control, we’re the ones calling the shots, then we don’t have to be scared of it (although, in truth, we still are).

The problem is that putting distance between ourselves and this beast we fear (disability) doesn’t guarantee that the beast won’t one day come breaking down our front door anyway – it doesn’t even improve our odds. As a societal group, the disabled is one which any of us can join ourselves at any moment, at any point in our lives, and it’s all pretty much out of our hands. And most of us, if we live long enough, actually will join The Disabled. Many of us who have been known to cavalierly and even defensively throw around the word “retard” find ourselves, one day, holding our newborn infant while a geneticist tells us, “Your son has Down syndrome,” or sitting in a neurologist’s office after a battery of tests and evaluations being told, “Your daughter has autism.” And suddenly, all the times we so thoughtlessly and even cruelly said “retard” come crashing down on our heads, and we feel a horror and a remorse so deep that we feel like we’ve broken our own hearts, and we say, ‘Never again. Never again.”

It often takes actually coming face to face, in a very up close and personal way, with that which we fear (and therefore dehumanize and marginalize) for a real change of heart to occur – to realize, “Wow. You know, this is kind of scary . . . but it’s not at all what I thought it was. These are real people with real feelings and real value, and they deserve better than this.”

It’s not just about getting people to stop using offensive language – it’s about changing fundamental attitudes. It’s about making everyone see people with Down syndrome – and, indeed, with all sorts of differences – as valuable human beings worthy of love, friendship, respect, compassion, dignity, and opportunities to learn, grow, and thrive. The same things we are all deserving of as fellow human beings.

Think before you speak. It could be you one day, or your not-yet-born son or daughter or brother or sister or grandchild being dehumanized and marginalized by words and attitudes. Don’t we all want a kinder world than that?

Would You Like to Be a Guest Poster Here For Down Syndrome Awareness Month?

October is Down Syndrome Awareness Month – a time when people touched by someone with Down syndrome try to raise awareness by talking about Down syndrome and how it impacts them, by trying to break down stereotypes and prejudices, and by promoting the fundamental right of people who have Down syndrome to compassion, respect, dignity, and opportunities.

Raising awareness is sort of a two-pronged fork: we try to raise awareness to the general public by debunking myths about Down syndrome, challenging preconceived ideas, and showing that people with Down syndrome are not less than, just somewhat different. On the other prong, we try to raise awareness to families who have just been plunked down on this path – the one of facing a prenatal or postnatal diagnosis of Down syndrome. In that respect, we try to show that having a child with Down syndrome is not a tragedy, and that having a child with Down syndrome is full of just as much joy as having any other child.

Sometimes raising awareness to either set of folks means that we focus mainly on the positive. There is good and bad to that, to my way of thinking. My friend Melissa said it best here: The Rosy Picture. In any case, I’ve always tried to be honest and frank when writing and talking about Finn and how Down syndrome impacts our family.

This month I want to try something new: I want to hear from YOU. I want to hear how your feelings and views about Down syndrome, disability, and differences have been affected by following Finn’s and our journey, either online, or in real life. If you’d like to write something to appear as a guest post here sometime this month, please send it to me at lmorguessAT gmailDOTcom. It sure would mean a lot to me!

I will also be writing about Finn and Down syndrome throughout the month.