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My Connection to Disability — A Long, Thin Thread

8 Jul

This post is part of a summer blog hop that is the brainchild of Meriah Nichols. See other posts on the topic of Connection.

Until my son with Down syndrome was born about 6 years ago, I had no connection to disability in my life, or at least I didn’t think I did.

But if I scour the archives of memory, I see the little moments of connection that were threaded through my life. I hesitate to claim them as anything to do with me, because mostly I stood on the periphery.

No one in my family was disabled, but enough of my aunts, uncles and grandparents were sick or infirm that it made me scared of illness, hospital stays and nursing homes – things I associated with disability at the time, though I don’t now.

As a child, I was often sick. I remember missing school; even worse, I remember missing my one and only chance to go to the circus. We had to cancel at the very last minute because I was sick. Again.

I was born two months premature and had a host of allergies, now resolved. Every Wednesday, I got a shot in my arm that left a bruise. After a while I didn’t notice it, but to this day, the antiseptic smell of that doctor’s office and the antiseptic look of those wood paneled walls occupy a prominent space in my sensory memory, not at all tempered by the sweetness of the weekly lollipops.

When I was around 10, my mother took on the nearly fulltime job of caring for her elderly mother. My grandmother did not live with us, but it seemed my mother was constantly at her apartment, doing her shopping, helping her with daily tasks or making doctor’s appointments.  I got to help too, which I was glad to do. We’d go to the grocery store and I’d take my Nana’s list while my Mom shopped for us. That was fun for me.

But my mother seemed to get little in return for her efforts. My Nana, all of about 5’2’’, had a sharp wit and an unsparing eye that saw fault more easily than success. My mother never said in so many words that this caregiving was stressful, but I saw that it was. I dreaded the day I might have to become a caregiver for someone and vowed I would not let it consume me. (Little did I realize that her being a parent — my parent — was also likely all-consuming.)

In our neighborhood was a boy my age whose disability rendered him permanently childlike, both in stature and cognition. At 13, he looked like a 6-year-old. I don’t know if he had an official diagnosis. If he did, I never knew what it was. All I knew was that he had a sweet smile and very gentle eyes, magnified to twice their size behind stereotypically 1970’s style Coke-bottle glasses.

His mom would take him outside on their little row-house porch, just up the street from us. Everyone who passed by was a “friend,” who she gently encouraged to “Come on up and say hi to David.” I see now the steel beauty contained in this little act of hers, this determination that neither of them be alone. He was her only child.

I would often stop and say hi to David, which really meant sitting on her wrought iron chairs and having a glass of cold ice tea, quite good, while listening to her narrate the world for David, who never spoke. He would move back and forth from foot to foot and smile eagerly through the iron bars of the fence, making little noises when his Mom pointed out a squirrel or a cat, or a bumblebee. If his Dad happened to come home from work while I was there, it was like the heavens opened, and he’d wave his hands and squeal with excitement. Happiness.

Summer - Iced tea

Summer ice tea, © sashimisoda, 2014

Once I babysat for him, this boy exactly my age. I cut his sandwich into small pieces at lunch, played quietly with his toys alongside him, helped him sit on the potty and wipe afterward. The whole time we were together, he was calm. When his Mom came home, he behaved more defiantly, and seemed uneasy.

I always chalked that up to him somehow understanding the resentment I thought I saw lurking beneath the surface of her face, her mouth hard set in a line of displeasure. David never got any better, and I sensed that she took it hard. She would sometimes express the idea that it was hard, raising David, and yet her voice always resonated with a sing-song of joy, especially when talking to him.

So now looking back, again with the perspective of a parent whose children are often defiant and then some, I wonder if it wasn’t just him unloading his frustrations on Mommy (as all kids are wont to do), his sense of confusion over why she had gone and left him with this quite boring young teenager.

The only other child outside of “typical” that I encountered was another young charge that I took care of once a week when I was 16. He was about 7, and his father had recently died of cancer. Apparently, he wasn’t able to process this event and seemed to the untrained eye to be mentally disturbed.

He’d walk around the streets wearing a blanket as a cape and calling himself Jesus Christ, but not in a pretend way. He seemed convinced of it: he was God and as God, he’d surely find a way to bring his father back. Other children avoided him and just about everything he said or thought seemed, in a word, strange.

I can’t recall exactly what we did to pass the time when I took care of this young boy. Maybe some board games or pretend games? I really can’t say, all I can recall is the one time I had to put him to bed. I think I had to give him a bath, after which he absolutely refused to sleep in his own bed and so I had to try and get him to lie still in his Mom’s bed, an impossible task as he kept hopping up and down and I had nothing but words to talk him out of it. By the time his Mom got home, I was mentally and physically exhausted, but proud that at least he now seemed tired enough to sleep.

I was fascinated by him and had wanted so desperately to help him, thinking in my naiveté that I could, or should. After writing this, I decided to look him up on Facebook. If the adult male I found is not him, he’s doing an excellent approximation. I felt much relieved to see that his public profile shows him cavorting about in a variety of juvenile selfies, including one of him picking his nose. Ah, the resilience of the human spirit.

While still in high school, I got a fulltime summer job caring for an elderly woman with Alzheimer’s who lived with her daughter across the street from us. The woman, let’s call her Eleanor, was very gentle in nature and laughed easily.

She couldn’t walk without assistance, so I didn’t need to worry about her wandering away or hurting herself, because she spent all day sitting in her chair watching TV. I was there simply to keep her company and help her to the table when it was time for lunch. She couldn’t use the bathroom anymore, so I also had to change her Depends a few times. Though potty-training my own child sometimes filled me with exasperation and even disgust, this act of basic caregiving did not faze my teenage self.

Eleanor had many moments of lucidity, but more often she would ask when her husband or her son was coming. (They weren’t; her husband had died and her son lived far away and rarely visited.) We settled into a basic routine: she called me “You” if she needed anything, and I often read books while the TV played on, pausing to laugh with her at something silly. Oprah at 4 p.m. was a highlight for us both. We enjoyed the show, but we also knew that when it was over, her daughter would soon be coming through the door.

Row homes © injoongeum, via Flickr

I hope you, dear reader, haven’t come away with the wrong impression after reading these stories. I did not take these caretaking jobs because I was a kind person. I took them because I wanted the freedom that came with earning my own money, and these were the most readily available jobs outside of working at the mall, which I also did. Teenage girls were not always burnishing their resumes during breaks where I came from (but we all got into good colleges anyway). They were  finding ways to earn the spending money they needed to go dancing and buy the music, cute clothes and dangly earrings they read about in magazines. I had an internship, sure, but I also worked at the mall, sold Avon, and took care of people.

Yet I wonder: in these acts of caring, did I absorb some nuggets of truth about life? I doubt it. But I do think that sitting here, thinking about these stories, has made me realize that I’d been exposed to a wider variety of people than I thought. In theory, I don’t think of disability as a very big deal, though the concrete reality of it is much more complicated. But at least after all these years I’m not scared of being someone’s caretaker anymore. Being my son’s caregiver has been nothing like I worried it might be in the early days. It has not consumed me. We have a fun, active family life with our three kids – big sister, my son and his twin sister — that he is fully part of. The boogeyman of my childhood, chronic illness, did not come for us as I feared, though for the first few years of my twins’ lives, I thought he might because they were constantly sick.

If I’ve come to think anything specific about disability it is probably that we shouldn’t assume that someone who looks disabled needs our help. Ask first. More often than not, people with disabilities could mainly use a friend, a bit of conversation, a hand that reaches out and tells them that they are a part of the community too. Acceptance – not just tolerance, but an acceptance that they are who they are and it is no trouble for you to meet them on their terms.

I’d love to say that this way of thinking made it easier for my son with Down syndrome to have me as a parent, but I’m pretty sure it did not. No amount of caretaking could have prepared me for this most interesting and challenging of tasks, and most days I’m still not up to it. I don’t deserve his unconditional love and I’m barely quick enough to keep up with him.

I don’t really think of the term disabled as applying to my son, though I know it does; I am not in denial. Our boy is just our crazy little son, one of the funniest kids I’ve ever met, endlessly entertaining and frustrating in almost equal measure. If this gives me a connection to disability, then I guess I have one, but it doesn’t feel true. I don’t know any more about disability than I did at 16. But what I do have is a greater variety of stories to share. I hope you’ll visit again for more. In the meantime, check out the blog hop, where writers from across the world share stories about disability in their lives.

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The “R” Word: A Brief History

15 Aug

This is the best post I have read explaining why casual (and purposeful) uses of the word “retarded” hurt families of children with special needs. It also does a great job exploring the word’s evolution from clinical term to slur.

Life As I Know It

When Finn was but a wee newborn lying on a tiny bed in the NICU recovering from surgery, a blood test confirmed what my midwife had suspected: that he had Down syndrome.  I thought that empowering myself with information might be a good idea, because for the most part Down syndrome was a huge mystery to me.  Really all I knew was that people with Down syndrome looked different, they usually had bad haircuts and wore bad clothes, they were prone to heart defects and maybe some other vague medical issues, and most of all, that Down syndrome was definitely something awful that nobody wanted their kid to have.  Michael and I headed to Barnes & Noble to see if we could find some books on the subject (and I’ll never forget, we saw a young woman waiting in line to pay – a young woman who had Down…

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So, What DO You Say?

4 Oct

Much of what you read about the moment that parents find out their baby has Down syndrome — and maybe this applies to other disorders diagnosed at or before birth — has to do with what the doctors did right or wrong in relaying this information. Some doctors present it negatively, some neutrally, and others are full of encouragement. Obviously, some methods of telling parents this life-changing news are better than others. But that isn’t what I want to talk about.

I’d like to talk about the reactions of friends and family, which can be just as important for the new parents’ emotional health. It is a time of such clarity in your life as a parent, you are unlikely to forget the words that were uttered by your loved ones when you told them the news, or at least the message those words conveyed.

For instance, my father’s reaction is something I remember quite clearly. Born in the 1930’s, my Dad is a frugal, loyal, sensible and hard-working person. He’s also a very religious Catholic. Almost every day, he goes to Mass. He prays novenas and rosaries. For some years, he worked for a Catholic university and also volunteered there, helping with, among other things, programs and trips for people with physical and developmental disabilities. Currently, he is retired and volunteers at a Catholic elementary school for the visually impaired. So, among everyone that I know, I figured that he’d have the most pearls of wisdom to share, that he’d probably say something profound or talk about what he learned while working with disabled adults. At the very least, he’d be full of optimism.

But when I told him over the phone, he reacted from the gut — the truest, most honest, most human reaction of anyone I told. Simple words that validated my deepest feelings: “Ah, no…” he almost wailed, “no, no, no, no, no.”

You have to know him to understand how hurt he sounded. Not for him, but for us. I felt like I might cry. But I thought I understood where it was coming from, at least. You see, he and my Mom had their own hardships with babies, much worse than anything I’ll ever go through. They had numerous miscarriages before having me, and even harder to bear, they had two babies born prematurely, about a year apart, who were baptized but did not survive. I’m an only child, and they waited and struggled 12 years to have me. Maybe he thought that after paying that debt, his family would never have to go through more heartache in a maternity ward. But there we were, hearts torn open. At least for a short time.

Of course, he just needed space to digest the news. I can’t remember if it was later that day or when exactly, but the next time I talked with him, he was calm and thoughtful, telling me what a special person our son would turn out to be, and that he would bring us closer to God. My Mom was poised from the beginning, taking in the news calmly, reassuring me that we would certainly deal with it and that it was all going to be O.K. She’s the real rock of the family. I’m more like my Dad, all raw emotion.

I appreciated his honest reaction because it reminded me that no matter how we think of ourselves — sophisticated, enlightened, hardened, religious, or philosophical — when it comes to our children, we are often nothing more than primal.

So I’d urge a tender touch with family and friends on the receiving end of the news, who may be just as stunned as the parents. Remember, everyone brings something different to the table, and when situations like this come up, some people struggle for words — I would argue that, among loved ones, there really is no right or wrong reaction. They might say “I’m sorry,” or “Oh, that’s terrible,” or express similar sadness. Give them a break, and don’t hold a grudge based on the first words out of their mouth. Their “I’m sorry,” might simply be a way of expressing empathy with you at a very emotional time. Whether quickly or slowly, they will likely all join your cheering section. But give them the time they need to process things. And if you are still processing things yourself, don’t tell too many people. Wait until your nerves at least feel a little less exposed.

If you happen to be the relative or friend of a couple who has just found out that their new baby (or baking bun) has Down syndrome and are looking for some encouraging things to say, here are a few ideas:

“I’m sorry you’re upset, but this does not change how excited we are about the baby. Take the time you need to digest the news and let us know how we can help.”

“Congratulations! She, and you, are going to be fine. There is plenty of support and educational therapy out there for children who have Down syndrome.” (Please don’t call it ‘Down’s,’ as in, ‘for children with Down’s,’ or ‘for Down’s children.’).

“We love you and the baby very much and can’t wait to welcome her into our family/home/circle/ya-ya sisterhood. What can we do to help with daily chores so that you can focus on learning more about the baby and seeking out all the medical advice you may need?”

“Can we help you find some local parents to talk with about this?”

Fellow parents rock, by the way. They are the best sources of support and information. Do not delay in seeking them out. If you live in or around Charlotte and don’t know where to start, please visit http://www.dsacnc.org.

We had to break the news to many people over the course of those initial months. Everyone was wonderfully upbeat and supportive. I especially appreciated the comfort imparted by one of my oldest and dearest friends, who was able to visit me in the hospital in New York after the twins were born.

I remember her telling me not to worry, because there were no guarantees in life for any child. No child is ever perfect, she said, and even those that are born “typical” can get sick or hurt or something else could go wrong later in their lives that you’d have no control over. Be glad that he’s healthy otherwise, and that people with Down syndrome are now living longer lives than ever before. And then she said something that really stuck with me: When the girls become teenagers and spend all day saying “I hate you, Mom!” he’ll be running over to give you a hug and saying “Mommy, I love you!”

Some days, I’m not sure I’ll make it that far. But if you stay tuned, I’ll let you know what happens.

A Birth Story

26 Sep

Our narrative began, as many stories do, with a pregnancy. A twin pregnancy, it turned out, to our eternal surprise. We were scared, but elated too. Luckily, it was a pretty uncomplicated pregnancy, and I worked full-time until my 34th week. I was hoping to avoid a C-section, and my doctors agreed. They were excited about the prospect of delivering twins. But my body had other plans. At 35 weeks, I got a painful uterine infection that brought on contractions and got progressively worse. I was not dilating at all and the babies needed to come out. Off to the operating room I went.

I was terrified, but the surgery went fine. We learned it was a boy and a girl, and my husband, from his perch behind the white operating sheet, said “Oh, he’s cuuute,” when the boy was born. But the babies were whisked immediately away, to be treated for respiratory distress. I didn’t even get to see them. Then, I was knocked out cold because I was an emotional wreck after the painful labor and surprise C-section. Apparently, I kept saying “Ow, ow, ow!” as they were sewing me back up and freaking out the anesthesiologist. Two hours later, I emerged groggily from my stupor and my husband said the babies were fine; it was too late to see them now. He told me to get some rest. I was disappointed but exhausted, so I complied.

They next morning, I felt pretty refreshed for someone who had just had two big-headed babies taken out of her stomach and was doped up on Percoset. (Good stuff, that.) I couldn’t wait to get to the nursery. The kind of anticipation you feel when you are about to discover a newborn child, or children, for the first time, is magical beyond compare. I couldn’t wait to meet them and see the “cute boy” especially — our only son!

The girl’s crib was first. Oh! Look at that little pink face and that dark wavy hair. And those cheeks — they could conceal handfuls of M&M’s. Hello, little girl baby, you look so much like your big sister. Where is your brother? Ah, there he is. Aww…look at that adorable spiky hairdo — he must have had a personal stylist in the womb. But wait, why do those ears look so funny, like little shoots of cauliflower? Maybe there was some trauma when they took him out and the ears haven’t unfolded yet. Hmm, from this angle his face looks funny, almost like he has…Down syndrome. But how could that be? We did the screening tests, which I know don’t actually diagnose anything, but still, there was no indication….

Let me look at the girl again. (In the beginning, we called them “the boy” and “the girl” even though we had names picked out. I guess there is more of a disconnect when you don’t know the sexes ahead of time and you are still processing that part of it). Hello, little chubby cherub girl; you look like I expect a newborn kitten-human to look. I’ll be back. Hello, little cherub boy. How are you? You still look a bit strange to me. It was Labor Day weekend and the hospital seemed short on staff, particularly a doctor I could ask about this one small glitch.

A nurse I cornered brushed it off, saying, “Oh, you can’t tell at this age.” In the end, this was not a helpful thing to say, because this leaves the hormonally unbalanced mother stuck with two unpleasant options: either she is crazy and cynical, or her baby son really does have Down syndrome and no one has the guts to tell her.  I did eventually find the doctor on rounds that morning, but in my confoundedness, it seemed that he did more hemming and hawing then actually answering my questions, mentioning something about a “test” and how we’d really have to talk to the neonatalogist on Monday. Monday?

I went back to my room, feeling a little winded, but still chipper enough. My husband did not answer the phone at home, and I figured he was already on his way back to the hospital, so I called our doula, our labor helpmate. Who, by the way, was about as heaven-sent as they come and helped us through the birth of our first daughter too. She said that yes, the obstetrician had mentioned something about how our son had some markers for Down syndrome, and the doctor told my husband too. OK, so I wasn’t crazy. But yikes! Down syndrome? How were we going to handle that, plus twins!!! Well, maybe he doesn’t actually have it, or he has a mild case or something, is that possible? But wait…my husband knew? And he didn’t tell me?

When I spoke to him later, he said he wanted to call me that morning, but was busy getting our almost 3-year-old daughter up and ready to go to his mother’s house so he could rush back to the hospital. He said the doctors wanted to tell me the night before, when I woke up after the birth, and he told them no, please wait. I have to say that, in the pantheon of wise decisions made by devoted husbands on the fly, this would have to be among the very wisest. Coming out from unconsciousness and then being told that your son has a condition that will make his life a struggle to achieve what others take for granted is probably not a good idea.

So this is how we began our journey, my son and me. He played the part of the mysterious stranger, and I played the part of the confused mother who doesn’t understand why she is so put off by her new little son. His little birdlike face, his floppy little limbs. In some of the first pictures we took of him coming home in his carseat, he looks like a miniature old man. It took me forever to think of him as cute, but now of course, two years later, I think he’s adorable, beautiful really. In those first days, it was the love and support of all our family and friends that buoyed us, as well as the tender care and wealth of information bestowed on us by everyone at the hospital. To all of you, thank you for giving us such a solid start. We will never forget it.

And There He Was

20 Sep

I didn’t really know anything very true about Down syndrome before our son came along two years ago; what I knew were notions — fuzzy, outdated, misinformed notions. The truth of the matter is, having a child with Down syndrome has opened up a whole new world for me, full of fascinating people and spirited little children with wills of steel. Our son has taught me more than I could ever teach him. It sounds corny, but just about any parent knows that lots of things that sound corny actually turn out to be true. He teaches me that everything in life is hard earned — even joy, even laughter. That the highs are so high because on some days you think they might never come around — but then, they do! He is the most impressive person I know, simply because he works so hard to get to the starting line for every task that a baby person must learn. But once he gets there, look out! He can’t wait to keep going ….as far as he’s concerned, he’s the funniest, handsomest, most charming person in the room. And he’s right.

In the days after his birth, I never imagined he would literally bring so much laughter into our living room. But it has been an emotional ride for me, trying to come to an acceptance, an understanding of him without always thinking about his Down syndrome first. It’s just that everything seems colored by it sometimes, even though the literature always tells you that your baby is a baby first. But separating the two has been harder than it sounds, and I’ve had many more tough days than inspiring ones. So it’s OK if you feel down about having a child with special needs, or about how you are coping with it. It really is. And trust, me you will get through it, and it will get better.

I hope to use this space to share some stories about how we got this far and what happens now. I’ll write about the rest of my “crew” too. That I’m here at all is through the graciousness of my son’s speech therapist, Sherry Kornfeld, who owns Early Bird Developmental Services and provides therapy through the North Carolina Early Intervention program. She asked me to write a blog one day when she must have been especially sleep deprived. I am receiving no compensation, and the opinions I express are solely my own.

My modest hope is that this blog can provide a few moments of respite or validation to any parent, but especially to parents of children with special needs, who on average have it harder than most. I won’t aim to be comprehensive or newsworthy, though if I am don’t expect me to repeat it. I hope to at least make you laugh once in a while, even if you’re laughing at me, not with me.

To introduce my family, there is my husband, who got a great job offer last year that brought all of us here to Charlotte, NC, from New York City. Now we are all living off his toil, as I had to quit my editing job and throw out my business cards (I saved a few) when we moved. Then there is our oldest darling, our nearly 5-year-old girl. Next are the twins, a boy and a girl, now 2. We came to Charlotte with our beloved white bunny, Jojo, but sadly he moved on to the rabbit farm in the sky early this year, leaving us petless.

As for our son, we found out about his diagnosis at birth, which was fine with me. I think knowing ahead of time might have made me sad or scared, and having twins in the belly is enough of a stress without that. But I can say now that there wasn’t anything to be sad or scared about. Please, above all things, try not to be scared if you have just found out your child will have Down syndrome. There will be plenty of time to be worried, or frustrated, or mad or sad, or confused, but just don’t let fear get to you. The expectations for what people with Down syndrome can do with their lives has never been higher, and there is plenty of help and support out there. Every child is different, of course, but our son is doing just great, and keeping up with his twin sister wherever possible. He also happens to be lucky in that he has none of the medical complications, like heart problems, that can sometimes come with Down syndrome. I know many people whose children have dealt with these issues, and although their lives may be harder at first, the rewards and the triumphs are the same. While I certainly feel blessed that our son is healthy, things have not always been easy emotionally. From the first, it was strange, traveling along this road with him.