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Archive for the ‘Life with Down syndrome’ Category

Over 18 years ago, I found out through a blood test and amniocentesis that my second child had Down syndrome. Back then, there wasn’t much in the way of the Web, so I went to the library. I found one book that talked a bit about children with DS and had a few pictures that weren’t really flattering. I didn’t feel I had much to turn to in the way of sweet stories, adorable photos of adorable kids and babies, support systems, etc.

That did start changing when I had her. I found out about Band of Angels, which at the time was creating gorgeous calendars featuring models with DS shot in lovely settings. We were officially entered into “early intervention” programs where we lived and she got help with physical and occupational and speech therapy and so on. I got involved in a local Arc.

But for so long, my daughter was little, a child. She was cute, she was the poster girl for the UCP Center’s yearly fundraising campaign. She was a doll, just lovable and outgoing and friendly.

And it’s kinda funny, because for a while now, there’s been more online awareness of younger children with Down syndrome. There are plenty of groups and cute photos that circle social media. But not a whole lot in the way of adults getting attention. (But now there is the A&E reality show “Born This Way,” that follows young adults with DS living their lives, so that is cool progress.)

In short, it was relatively “easy” to have a child with DS. It wasn’t a whole lot different than raising my other children.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

She had a great time this spring playing in a local softball league for people with disabilities. SO cool.

What started a change was her adolescence. She hit 14 and started puberty. She got a period. She learned about wearing pads (and not to talk about them all the time in public). She became a teenager. The moodiness that’s hard to talk through, as I have done with my other teen girls; the periods; the observations about cute boys or about seeing her sister or friends at school dating or holding hands or kissing … it wasn’t something I was really prepared for. It wasn’t so “cute” a time as when the DS kids are younger and still sporting the adorableness of babies and preschoolers. So there’s not as many pictures, not as many inspirational stories circulating Facebook and the like. For me, my new situation parenting a DS teen was kind of uncharted territory.

And that’s become even more so now that she is 18. She’s legally an adult today. But unlike my older adult daughter, she doesn’t have a driver’s license, can’t help out driving herself and younger sisters around; doesn’t run errands for me; doesn’t babysit. She needs a bit of babysitting/supervision herself still. She’s emotionally and mentally really more like a 7- or 8-year-old in a lot of respects. But she’s bigger and developed and has a menstrual cycle. It’s harder to discipline her. She’s moody and just mumbles loudly or trounces off to her room and slams the door if I try to tell her, gently and kindly, that she should be nicer in how she speaks to her 9-year-old sister, for instance. I can’t really talk her through things.

In short, it’s not so cute anymore. It’s NOT not that different from parenting my other children, like when she was little. Don’t get me wrong: she is bright in many ways and really helpful and can be incredibly sweet. She’s pretty great. But it’s now really evident that she’s different. She has Down syndrome, and it’s obvious.

We’re getting her a state official I.D., not a driver’s license. We’re talking about some programs that she can do post-high school, next year. We’re starting to think more about what kinds of things she may be good at, what she will enjoy, for work-type opportunities, for socializing, for living arrangements. This is a whole new ballgame.

That story a parent wrote a few decades ago about embracing a new reality called “Welcome to Holland” seems to be hitting me now. The writer compared having a child with a disability as planning (during a pregnancy) on going on a “fabulous trip to Italy.” But then the new reality hits, and you’re going to Holland instead. In the past 18 years, especially, I’d say, the first 12 or 14, I was kind of going to Holland with Marissa, but I still had plenty of experience in Italy, with my other three children, for sure. And then with Marissa, I was kind of in Little Italy in Holland. Now, though, that feeling of visiting Italy at least through restaurants or guidebooks or seeing pictures on the Internet has dropped away. It’s hit me that I’m really in Holland.

It’s OK, just as the story goes. But I didn’t see it coming. Or I kind of did but now it’s hitting me. And I’m going through another adjustment period. And there’s not a lot in the way of cool or cutesy memes or stories or photos going around online — but, like I said, there is “Born This Way,” so that’s a good step in the right direction. Maybe I’ll start seeing more of that. And my sharing my experiences will prompt others to share. Or I’ll just start finding others’ stories more, seeing them amongst all the other stuff that’s online.

So here I am, my cruise ship permanently docked in Holland, at least with one of my children. I’ve got ships in Italy with the other three. It can be jarring a lot of the time to switch between the two countries. But I’ll make it work, and it’s a new adventure.

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I haven’t been a fan of “No Child Left Behind” since it started. It’s clear to me that essentially saying, “We’re going to make education the same for all kids and make them all perform well” isn’t going to work. I have two major gripes, addressing kids on both ends of the spectrum — and I know whereof I speak. I have a child with Down syndrome whose IQ and certain academic abilities are far below normal. Yes, she is a bright, alert and involved girl who’s eager to work and do lots of things, but she will never grasp certain concepts, at least not well enough to pass a test on par with her non-disabled peers. Though I do want to push a little to see where my daughter’s boundaries (and full capacities) lie, that doesn’t mean there aren’t some real limits to what she can do compared with people who don’t have her intellectual disabilities.

On the other end of the spectrum, I have daughters who do not have that genetic limitation, and they are very intelligent and talented. Problem is, though they have been tested and shown to have high capacities (IQ, academic abilities, creativity, what-have-you), there are no active programs to encourage them as they develop those skills. Our school system in this city has what’s called a Gifted and Talented program (GATE), but it’s essentially just a pretty, shiny sticker to put on my girls’ academic folders. It means absolutely nothing because it has no funding and no activities besides maybe a field trip once a year to see colleges or something similar.

I have to chuckle when I think about the contrast here with my experience in the great gifted program I enjoyed in my middle school years. Here’s why: it was in Mississippi, which many basically consider the educational laughing-stock of the country. But despite the truths and/or misconceptions in that assumption, it provided for the gifted students. We spent a good part of one day per week exploring other parts of our brains, creating and thinking differently. It was challenging, interesting, and lots of fun.

My oldest daughter has enjoyed the fun and creative challenge of the Odyssey of the Mind program.

My oldest daughter has enjoyed the fun and creative challenge of the Odyssey of the Mind program.

Now I find it extremely frustrating to have children who have the need to explore, create and “think outside of the box” but have no program that addresses those needs. My oldest has been lucky the past two years to get involved with a program called Odyssey of the Mind — but only because she had a friend who was already involved at another school. She was allowed to participate in the program by special arrangement, because she attends a different high school in the district. Thank goodness that was allowed to happen. This is a really neat opportunity for her to create, stretch herself, think outside the box, and so on. Now I would like to see my younger daughters involved. But I’m thinking the only way that’s going to happen is if I pay for the program and take charge of it myself. (I may very well do that.) It fits very nicely into what I envision as being a perfect GATE program. Why doesn’t our district use it?

So this has been on my mind for years, literally, and for the past few weeks I’ve been thinking about how to improve things a bit just here in my younger girls’ schools (middle school, elementary). But, again, this is a much bigger problem that’s not affecting just my kids; it’s affecting all the high achievers throughout the country. I read a great piece in the Boston Globe on the topic today, and I sat here nodding my head, shaking with frustration. Why can’t we actually tailor education to different kinds of students with differing natural abilities? Why do we have to act as if students all can be equal if we just say it’s so or should be so? (That’s another topic as well….)

Here’s a great excerpt from the article:

In 2002, President George W. Bush signed the No Child Left Behind Act, which penalizes public schools that don’t bring the lowest-performing students up to grade level. The federal Individuals with Disabilities Education Act regulates special education and provides schools with more than $11 billion annually. A provision of federal education law called Title I allocates some $14 billion to schools that have a higher proportion of students from low-income families, to pay for programs designed to keep them from falling behind.

The smartest kid in class, by contrast, is not an expensive problem. A boy or girl who finishes an assignment early can be handed a book and told to read quietly while the teacher works on getting other children caught up. What would clearly be neglect if it happened to a special-needs child tends to look different if the child is gifted: Being left alone might even feel like a reward, an acknowledgment of being a fast learner.

Not surprisingly, programs oriented toward gifted children get barely any federal funding.

Once again, we see a problem that affects kids from varying economic and social backgrounds. There are bright, capable kids from immigrant families, from families that are poor, from families that aren’t well educated. But they could really over-achieve and give back to society in a big way if given extra attention. Problem in our current climate is this: if they were underachieving, they’d get more attention. ISN’T THAT INSANE?

I am lucky to be able to give my daughters lots of enrichment because I’m college educated and well-to-do enough to have the funds to introduce them to museums, good classic films, art, books, etc. I also have time to spend with them. That’s great for my girls. But, as I said in my previous post, it would sure be nice if I didn’t feel I HAD to provide all their enrichment because the schools are shorting them. Given these issues, again, Why can’t education be tailored to kids with different abilities? Why can’t we say, Yes, these kids could use some enrichment and encouragement in their naturally gifted ways? And other kids who have disabilities need special help and concessions, and we need to help them reach their highest potential, but not expect that potential to necessarily be the same as kids who don’t have those intellectual disabilities?

Gah! It’s enough to make a mom and concerned citizen scream.

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For the second time this week, I’ve come across a “campaign” to ban a word. Today, it’s the “Ban Bossy” movement, asking people to stop calling young girls “bossy” when they assert themselves, so we can better encourage girls to be leaders. Earlier this week, it was the campaign to ask people to stop using “the R-word.”

I can heartily get behind not just the idea of cutting the overuse and/or misuse of these words, but with the overall goals of the campaigns themselves. As a woman and the mother of four daughters, I am happy to support encouraging girls in their desires to make a difference in whatever community they’re in, whether it’s a classroom, a school, or a group of some kind. And as the mother of a delightful daughter with Down syndrome, I HEARTILY support the request for people to pledge to stop using the word “retarded.” I have never heard someone use it as a neutral descriptor of someone’s development, which is what it was intended to do: it simply means being slower or stopped in intellectual or emotional development or academic progress. What people always use it to mean is “stupid” or “beneath” or “outrageous.” It’s used as an epithet, as a put-down, a derogatory descriptor. I flinch whenever I hear someone use it in casual conversation.

Some may say that language is constantly evolving and that some of these movements are just about semantics. But words have meaning, whether that meaning is different today than it was one year ago or 50 years ago. They pack a punch. I absolutely adore words. I love their power to express thought and feeling, to communicate what sometimes is difficult to translate from abstract notions in one’s head and heart. Their accurate and precise use can feel like a miracle.

The problem is this: many people do not know their own language sufficiently well to be able to articulate correctly what they want to get across. They get by on a pocketful of vocabulary words when a stuffed backpack would do the job much more effectively. They do not understand that their careless use of that limited pocketful can end up coloring a picture in someone else’s mind that does not match at all the picture that originated in their own. That breakdown in transmission of understanding can create hurt feelings at the very least; it can change actions (not in the intended way); it can change attitudes (not for the better).

Since our language currently has evolved to use the word “retarded” to mean the colloquial “lame!” or “stupid” or “ridiculous,” the cat’s out of the bag now and we can’t force it back in, for the word to go back to meaning just its “neutral,” “unloaded” version. It is now a loaded word and will cause people to cringe. It will continue to insult those who have disabilities and those who care about them. So, yes, it’s time to take that loaded word out of our pocket or backpack and just toss it in the trash.

When it comes to empowering girls, who are growing into future women leaders, capable of contributing a great deal to society, we can stop belittling them with words like “bossy.” We can talk to them using words that express our confidence in their abilities, that don’t compare them negatively with boys, that don’t show some underlying expectation that they are lesser. We can value them as females and acknowledge that there are differences between the sexes but not fall back on easy gender stereotypes. “Bossy” may very well be already a loaded word with too many associations attached that we can no longer un-attach. At the very least, we need to be much more careful of how we employ it and in what situation.

Yes, words matter. They’re the building blocks of how we share our opinions, our feelings, our ideas. We need to choose them wisely and assemble them effectively.

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There are days I don’t think much about raising a child with a disability, and there are others that it seems overwhelming. I’ve written about a few of each of these kinds of days, I think, but today’s is going to be in the latter camp.

It’s funny: most posts I see online now that address Down syndrome are those “they are very special” or “they have impacted our family and others,”  etc. etc., inspirational kind. And they’re generally lovely and inspirational. At the same time, there are certain realities that come in between all that (just as with all child-rearing: the highlights are worth writing about, the so-crazy-they’re-funny-in-retrospect moments are worth a blog post, but the everyday stuff in between gets glossed over). In my case, as the mother of a 15-year-old daughter with Down syndrome, I have learned that there can be many, many moments of frustration and some embarrassment.

Here’s the thing: people with mental and emotional disabilities have a much more difficult time learning the social niceties. We take for granted that all of us after a pretty young age “get” the “rules” of appropriate behavior in our particular culture. But those who don’t “get” them stand out pretty starkly. Toddlers are excused from these rules, though their parents may smile ruefully. And, yes, people with obvious disabilities are kind of “excused” from the rules as well, or at least those who are mostly kind and observant are fairly understanding and downplay whatever’s said or done. But a toddler learns quickly and grows out of that stage and becomes another person who expects others to follow the rules.

My teen hasn’t grown out of that stage. She’s 15 now and still kisses people when she shouldn’t, pokes their belly buttons or other body parts, and shares all kinds of information that we deem to be private. Since she’s a young woman now, she has been menstruating for about a year or year and a half. That means we had to deal with her grasping the concept that she would bleed on a regular basis and it isn’t something to worry about. It also means we get to deal with her fluctuating hormones and moodiness, which isn’t quite as easy to explain or help her understand. And it means that she will say to anyone that “she has her pad.” Aiiieee! Whereas most teen girls would be mortified for anyone to know that they are having their period, even though chances are a quarter of the females around them are experiencing the same thing, mine is perfectly fine with declaring that information in any mixed company.

Here's the 17-year-old with the 15-year-old.

Here’s the patient older sister with the 15-year-old.

Then there’s the issue of boys and girls interacting. She’s at an age where her peers naturally are fixated on their relationships with the opposite sex. Her older sister and our exchange student, both older than she, are dating and sometimes kissing their boyfriends. All cute and sweet and perfectly innocent. Unfortunately, it’s another new and interesting phenomenon that Marissa has to talk about. She shared in Sunday School the other day to the whole class and the teacher that her sister had kissed her boyfriend. Older sister was there, wasn’t embarrassed about the information being known, but that it was being shared publicly at church. Just not the place or time, as most of the rest of us know per “the rules.”

Another issue: 15-year-old either insinuates herself between sister-and-boyfriend and exchange-student-and-boyfriend when they’re sitting or standing next to each other and possibly holding hands, OR she tries to push the two apart, even smacking the guy around a bit. Gah! I’m just hearing about all this secondhand, mind you; my 17-year-old is the kind and patient soul who is having to experience it firsthand regularly.

The latest: today, the elementary school office called to tell me my 6-year-old told a classmate a couple of days ago that she “has sex after school with her boyfriend.”

SILENCE.

I think you can imagine how appalled I was to hear that. First, I don’t think the child has any idea what she’s talking about. Second, we are comfortable with the topic in the right conditions, but this isn’t one of them. I then found out that the youngest said she’d heard it from her sister. That would be the 15-year-old. All I can guess at this point is that she’s heard kids at school talk about the topic in some fashion, because high school students do talk. She somehow then shared that topic with the youngest, and the recipe for an embarrassing and frustrating incident was created.

We’ll be having a chat with the 15-year-old and 6-year-old to talk again about what’s appropriate to say in public. The youngest was told this briefly by the lady at school.

Here’s the problem: the 6-year-old probably won’t talk about that again. But the older one will. With all of the above incidents, we have said OVER AND OVER and OVER … AND OVER … and over… you get the idea… “Don’t say ________ around other people.” Or “don’t touch other people. Hug and kiss your family and maybe hug some people, but DON’T TOUCH THEIR BODY PARTS.” Or “don’t bother Sister and Exchange Student while they’re sitting/standing with their boyfriends.” It’s not that we’ve avoided the topics or just said these things a few times. We must mention them several times a week.

I just don’t know if it’ll ever sink in.

Nope, these are the things we don’t read about in the sweet, inspirational blog posts or the news stories about a girl with Down syndrome being crowned prom queen or the boy with Down’s being allowed to make a touchdown in the football game. Those moments are ones their parents will cherish forever, I am sure. But the thousand, million, other moments of real life are likely much like the ones I’ve just chronicled.

Parenting is tough. It’s rewarding. And parenting a child with a disability is even tougher and sometimes even more rewarding. I think I’ve mentioned before that it’s getting more interesting and challenging the older my daughter gets. I guess we’ll see just how much more so, but I’m hoping the teen years will be the trickiest. We’ll just have to wait and see.

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They say that when you have a child with a disability, you must grieve the loss of the “normal” child you expected to have. I did this for a few days when I first found out through amniocentesis that my unborn baby would have Down syndrome. After that, I was as eager as any mother to give birth to a new baby. And her birth day was lovely and exciting and “normal.”

As I’ve adjusted expectations over the years and figured out at different stages what she has needed to aid her in developing and growing and achieving her potential, I’ve mostly rolled with the punches. But even as she walked and talked much later than my older daughter and did lots of things her very own way and at her own speed, I was mostly unconcerned. And she was so CUTE, and everyone she was around adored her.

Here she is at the high school, just a few days after starting.

Here she is at the high school, just a few days after starting.

I didn’t anticipate the interesting dilemmas that would face me as she reached adolescence and age out of elementary school. I certainly hadn’t given much thought to puberty (wha??!). Now, as of a few weeks ago, she is a freshman in high school. Just having her enter high school gave me a few little late aftershocks of grief; my oldest is a senior, and I’m right in the midst of being thrilled and excited for her and everything that’s ahead while simultaneously being struck smack in the chest with loss knowing she’ll be leaving home. I’m reflecting on the weeks three years ago, seemingly just yesterday, when SHE started high school and had all these new adventures and experiences awaiting her. How could my talented, sweet, fun little bird now be so close to flying out of our cozy nest?

So you see the stark contrast in experiences, in feelings, I’m facing as my second-born enters high school. She has a very different future ahead of her, not bad, but just different. It’s one I am unsure of, that is not nearly as clear as that of my oldest, because it’s not a path I’ve already forged myself.

Yesterday I had the yearly IEP (individualized education plan) meeting with the teachers and other interested parties at the school. But this time felt so different than every single IEP I’ve attended for the past 15 years. I was struck again by how far behind she is academically, that given her abilities, she simply will not graduate high school with a diploma, will not master algebra, even, which I’m informed is the “lowest” math class they have available at the high school. We still struggle with simple addition. But that wasn’t too surprising; I hadn’t really expected her to “graduate;” she can receive a certificate of completion, though, and that was an outcome I was already aware of.

No, what cut to the core was hearing that the classes she’s in right now are probably not where she needs to be, not because they’re too difficult academically (even though they’re the really basic versions geared for those who need extra help) but because they still are not attended by her true peers. The kids in these classes have struggles, but they perceive my sweet little girl as weaker, as a target, and they tease her. She’s on the outside. And I HAD NO IDEA. Sure, it’s only a few weeks in, and I imagine the teachers were just waiting to broach this topic at this IEP meeting, but knowing that my daughter has been treated just a little badly by classmates BROKE MY HEART.

(I did find out about another option for her class-wise that will probably be the better place for her when it comes to both academics and peers/potential friends, and I am going to look into it, visit, probably switch her, but that’s another story.)

I got through the rest of that meeting, signed paperwork, listened some more, asked questions, and considered, but I was really just hoping it would end so I could leave and not burst into tears there in the classroom. I came home and grieved for a few hours. Even as my oldest went to her band rehearsal and attended an open house on college options and scholarships and did all the kinds of things I did 25 years ago myself, I grieved that my second-born would not do these same things.

Did I think I’d already accepted that outcome? Yes, indeed. But it just started becoming reality, and it was such a stark contrast. I still am unsure of exactly what my daughter will do; she probably will eventually leave home and live on her own, with others in an apartment or in a group place that’s fun and friendly and warm; she will most likely have a job that’s simple for her to do that she enjoys. But it’s different. And will she always be able to find a place where she has peers, where she can make friends who are like her? Because right now that hasn’t been happening these past weeks. Will I miss something again in the future where she’s being teased or not fitting in? I can’t bear to think of it.

Sometimes grief comes anew and we must revisit what we thought we’d already “dealt with.” We must adjust expectations again and face the reality we could only see through the hazy, murky lens of an uncertain future. And it’s OK to do so. As I grieve, I know I will come out of it with clearer vision and a renewed determination to help forge a happy, workable life for my second child. No matter what, I do know that she will be happy and will make others around her happy as well. She’s already done that for 15 years.

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For a long time, I was young enough that I could still think “that (fill in the blank with anything particularly tough or tragic) can’t happen to me.” Then, as I got older, got married, and started having children, those things did start happening, either to me or to someone close to me, so that lovely delusion of the young went “poof.” Bubble popped.

Marissa babyI definitely never expected to be “one of those people” who had a child with Down syndrome. I knew a few people over the years, through church congregations actually, who had a youngster or teen with Down’s in their family, and I really, really never expected to be in that position myself. It was something that happened to other people. Only when I was pregnant with my second child and I picked up the newly delivered copy of the Reader’s Digest that featured the story of Alabama football coach Gene Stallings having a son, John Mark, with Down’s that it hit me — hard — that I could have a child with Down’s too. And sure enough, soon after I had blood work results indicate an amniocentesis would be useful, which confirmed my gut feeling. Yes, I grieved. I was worried, I was sad, I was surprised. But soon after, I accepted this new reality, and, well, you can read a little bit more about my wonderful teen on some other posts.

Dad's camera photos Oct 09 041I also thought my parents would live forever. Only other people’s parents died. When my husband’s mother died just a year after our first child was born, I was sad for my husband and myself, but I still thought it would be a VERY VERY VERY LONG TIME before my parents left this life. It still was 12 years later that I had to go through that heart-rending experience, but it was still far, far earlier than I’d expected to lose one of my parents. My dad was only 71 at the time and very healthy, though a bit of a hypochondriac (yeah, it’s true, Dad.). Now I know just how fragile and unexpected life can be.

This year, a family member ended up paralyzed from the mid-torso down after a surgery. That’s the kind of event I have certainly never pictured happening to me, and to have it happen to someone I care about is something that weighs on my mind. My thoughts are with her so much. Sure, you read about these kinds of things, but … having it happen to someone close is still unthinkable. Until it happens, and it’s always in your thoughts.

I’ve now had friends lose children, a very particular kind of heartbreak. We lost the bishop of our ward, our local church congregation, three years ago this month, to a fatal shooting. It was headline-grabbing news, the kind that strikes your heart when you read about it happening to strangers. Having it happen in your own church building, to someone you know, to a family that’s extraordinary … well, it strikes your heart and stays there permanently.

Yep, here I am in my 40s and I’ve left behind those days of “it happens to other people.” Whatever “it” is, it can happen to me, my family, my friends. Life is fragile. It’s unpredictable. It can bring tragedy and pain and grief. Yet, at the same time, every day of life is also a miracle. It can bring refreshing rain or warming sunshine. It can even create rainbows. And when life offers up “those things” to each of us, we face the grief, we work through the pain, we move on. But we don’t have to do any of it alone. I find it such a blessing every day to know I have friends and family to turn to when life serves up the unexpected. And I try to make sure I’m there for them when they face “those things.” When “it can’t happen to us” turns into “it does happen to us,” we have each other.

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Yes, she lights up our lives just as she is, but any improvement for her would be great too.

Yes, she lights up our lives just as she is, but any improvement for her would be great too.

I have a child with Down syndrome, but I’m not involved in the “community” in any way at this stage of our lives. (When she was little, I was on the board of directors of the local Arc, which advocates for and serves people with disabilities, but that’s pretty much been the extent of my activism or involvement.) I get a monthly email from the National Down Syndrome Society (or is it Congress? see: I don’t pay a lot of attention), and I sometimes read it. But generally, I don’t pay a lot of attention to the latest news.

This month, I’m late to the party in hearing about this latest bombshell of research: scientists have found a way to “silence” the extra chromosome that causes trisomy 21 in the lab.

Whoa, dude.

I’m still trying to get a handle on what the research really means. But essentially, it could mean there could be some kind of treatment developed in the future to help reverse some of the symptoms associated with people having a whole extra chromosome. Biggies: maybe reducing the likelihood of heart problems or even the cognitive delays that affect all people with Down’s. Apparently, it couldn’t “cure” DS before birth, but it would be a treatment sometime during a person’s life.

Of course, people who have children or other family members with Down syndrome, or who are self-advocates, have varying opinions about this news. Some worry that “curing” DS would remove a valuable segment of the population that arguably helps teach others about love and understanding.

Here’s my take: if it’s possible to give my daughter a better life, I’m all for it. Of course, I love her just the way she is, and I love how she is just herself and how she contributes in her unique way to our family. But I have every confidence she would be just as wonderful and a delightful contribution to our family and to the community if she didn’t have Down’s. I am not actively seeking or hoping for a cure. No, but if this research were to lead to some improvement in her life, even a drastic change, I’d still take it. If it allowed her to be able to (finally) understand math, for heaven’s sake, I’d take it. Why not?

I don’t expect that this research will lead to any real change or treatment within her lifetime, really. But in the land of what-if’s, I’m firmly on the side of taking a cure. I don’t think Down’s makes her the delightful, amazing kid she is; I think she’s just that person anyway. And if she could lead an even more productive and healthy life, I’d let her. Doesn’t every parent want the best for their child? I know I do.

As for the idea of taking away a whole “culture,” I still feel there are plenty of other people with disabilities of varying types that still teach us that extra love and compassion. I don’t see us curing any of those things wholesale. It would just be a strange kind of selfish to just keep people with a disability disabled if they didn’t have to be, just so we could have another way to help people be compassionate. That just seems upside-down and weird to me.

I’ll be interested to see what comes of this research. I won’t hold my breath for a cure or any real life-changing treatment from it. But it’ll certainly be interesting to see what happens.

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