Strollerderby : down syndrome

Parents Find Unique Way to Pay for Child's Heart Surgery

Hannah Tennant-Moore — Fri, 24 Apr 2009 15:34:00 GMT

Thanks to a tipster for pointing out a Web site that makes me appreciate the connective powers of the Internet more than ever. An adorable little boy named Tucker was born in 2005 with Down syndrome and a heart defect called Hypo-plastic left heart (meaning that only one half of his heart is functional). He has undergone numerous surgeries beginning when he was just 17 days-old, but his parents now have hope that he may someday live an active life.

This will require traveling to Boston, where Tucker will be operated on by the top cardiac pediatric surgeon in the country. Clearly, such a trip will entail enormous travel, room and board, and medical costs.

So Tucker’s parents have set up a site that allows people from around the country to connect with Tucker’s story and offer their support. Through the Web site, Tucker has gained the love of thousands of strangers, who have donated money and offered well wishes.

The amazing thing about the site is that the Bryant family has made donating fun and rewarding by creating a raffle with prizes like Amazon gift cards and even a weeklong stay in an Arizona villa. In these financially trying times, I can't think of a better way to afford a vacation than donating money for a child's heart surgery.

In addition to donations, Tucker’s family seeks photos of people wearing their Tucker love apparel (you can buy "I 'heart' Tucker" t-shirts and buttons through the site) or holding signs of support. They want his hospital room to be filled with loving faces.

Photo: http://ihearttucker.blogspot.com/

Update: Mom Seeking Lover for Down's Son Says Media Sensationalized Story

Miriam Axel-Lute — Wed, 18 Mar 2009 19:15:00 GMT

Don't believe what you read in the papers. I just got off the air from the World Have Your Say BBC radio program with Lucy and Otto Baxter.

Lucy is the mom I wrote about yesterday who was reported as desperately seeking a lover for her 21-year-old son with Down's. But according to Lucy herself, the article I was working off had things a bit skewed. Yes, she supports her son's right to have sex and to have a girfriend and is helping him look, but, she says, it's absolutely not her in the driver's seat. She also didn't seek the publicity: it sought them based on a small section on relationships in a documentary about Otto's life that's being released soon. And the idea of visiting sex workers in Amsterdam came up between Otto and his friends—she wouldn't disapprove, but he'd be paying himself, thank you very much.

I still harbor a little concern about his life being overshadowed by her mainstreaming activism. Lucy was certainly not letting him talk for himself (not, to be fair, that he had much to say, and I was cringing at the personal and stupid questions being asked of him. Would he rather have a girlfriend or go to a prostitute? Are you serious?). And there was a long debate on the show about people with Down's becoming parents before anyone thought to ask Otto if he wanted to be a father. (Not really, at least not yet.)

But it does seem that the at least some if not most of the yuck factor may have been introduced in the telling. In the meantime, some of the discussions of sex and disability it has spawned could be useful perspectives for parents whose kids may face these issues later in their lives.

Related posts:

Mom seeks lover for grown son with Down's

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Mom Seeks Lover for Grown Son with Down's

Miriam Axel-Lute — Tue, 17 Mar 2009 20:00:00 GMT

Raising a child with Down syndrome is no easy thing. It involves doing a lot of things you never expected to do be doing with your life.

But even the most well-educated and comfortable parents of the most high-functioning Down's children don't generally go publicly soliciting for lovers for their (grown) kids.

Lucy Baxter, a UK mother of four and a leading advocate for the rights of those with Down syndrome, is the exception. She wants her 21-year-old son Otto to be able to lose his virginity—enough that she's going public about it, asking women to step forward (and also admits considering hiring a prostitute). She also, in contradiction to some of the opinions voiced over at my post on the right to procreate, thinks it would be great if he could be a father.

Yuck.

Not yuck to the idea that someone with Down's might be a sexual being or even a parent (though I have concerns about the latter), or to the idea that we have to face the tricky question of when someone does or doesn't have the mental capacity to consent to sex. I don't even, under the right circumstances, think a prostitute would be awful.

No, just a big yuck that a mom is so desperate to prove her kid normal (and, dare I say it, make a political/social point) that she'll violate his privacy and meddle in his life in totally abnormal ways by making his sex life (1) her business and (2) a cause celebre.

If this were a story about a mom who started a dating service for people with Down's after seeing how depressed and lonely her son was, that would be something different. But least the way it's being reported, Otto is certainly interested, but the urgency is coming from his mom. Take this quote: "If he doesn't get a girlfriend, I will feel really bad, because I have sold him this thing that he is like everybody else."

Because everybody else has lost their virginity by 21? And has a partner? And ends up having kids? (And if he's just like everybody else, why would she prefer him to have a girlfriend who doesn't have Down's?)

Can you imagine if every 21-year-old who hadn't yet gotten laid had their mothers getting in on the act?

Update: Mom Seeking Lover for Down Syndrome Son Says Media Sensationalized Story

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They Say: Baby Signing Does Work

Miriam Axel-Lute — Tue, 06 Jan 2009 18:30:00 GMT

It's pretty darn preliminary, but two recent bits of research indicate that yes, babies who are taught sign language might be able to communicate earlier in a way that makes life easier for them and their parents.

As reported on Science Blogs (hat tip: Jake), the first of the studies involved two babies and graphed their process learning a sign ("please" in one case, "more" in the other), and then showed that they could use it "in the real world" with people other than the researcher. It was interesting to me that one of the kids had Downs (she was a few months older, but it was still interesting to note that she learned the sign just as fast). I know sign is used extensively with developmentally delayed adults, so it makes sense to be including it here. I'm glad they aren't waiting until a million tests have been done on "normal" kids, which often seems to be the experimental pattern.

The second study measured the decrease in crying/whining in two pre-verbal kids who were taught signs for the things they usually cried about. The crying went down as the signing went up. Of course there's a huge flaw in that one, as Dave Munger points out in his post: Along the way, the adults stopped responding to the crying and only responded to the sign. But not responding to the crying could have made it decrease all on its own.

I look at that this way though: Crying is not actually bad behavior in a pre-verbal kid, it's a form of communication. So I wouldn't want to "train" them out of it without giving them an different way to communicate. If you can give them a sign instead, then you're ahead of the game. So the results of that study, not matter what it's actually measuring, are still hopeful.

I'm inclined to believe sign is useful, of course, just based on my own experience. My kid talked pretty early, but I still wouldn't have wanted to give up the communication we had in the months before that when she could tell us a handful of things like "more" and "water" and "windy" and "Daddy." It was so much better than having no clues except facial expressions and crying volume.

All in all, we would need research with much larger sample sizes to prove anything, but since there's no particular down side to teaching a few signs (or even full-fledged ASL) to a baby, any indication that it's helpful should be good news to parents eager to get a little communication going.

Photo by gfpeck.

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Australia Rejects Doc's Immigration Application Because of Down Syndrome Kid

Amy S.F. Lutz — Mon, 03 Nov 2008 16:04:00 GMT

Australia is facing a critical shortage of doctors, particularly in rural areas, necessitating the hiring of many foreign doctors and nurses. So, you'd think government officials would be thrilled when one of those doctors, Germany's Bernhard Moeller, applied for permanent residence after working for the past two years at Wimmera Base Hospital.

But no. Because one of Dr. Moeller's three kids has Down Syndrome, his application was rejected. Thirteen-year-old Lukas was considered "likely to be a permanent drain on taxpayer funding," according to news reports, although Lukas goes to a typical school and plays cricket and football.

Let's see . . . health care for one boy with Down Syndrome, versus the 54,000 people in the community for which Dr. Moeller is in charge of providing intensive care services. Which party is really getting the better end of this deal? No wonder Dr. Moeller's rejection has aroused the ire of thousands of Australians, including Health Minister Nicola Roxon and Victoria state government Premier John Brumby. I wouldn't be at all surprised if this decision were reversed.

AP photo

Palin Chooses Name for Her Next Kid

Cole Gamble — Wed, 29 Oct 2008 16:00:00 GMT

Republican Vice Presidential Candidate Sarah Palin has more on her mind then just her future political career. She’s already thinking about her next baby. She, the mother of five kids with such fanciful names as Track, Trig and Piper, is already talking about the name of her next child. Forget the fact she is in the middle of a national election and could possibly be sitting in the White House eating caribou stew with foreign dignitaries soon, Palin’s got baby on the brain. Wanna know what name she picked out for the future Palin? Here’s a hint: it’s a hockey term. Got to read more for the answer...

So her next child’s name? Zamboni. You know, the big machine they use to smooth the ice at hockey rinks. This she told People magazine during a recent interview. It turns out Mrs. Palin was simply joking and has no plans on more kids (for now). However, not everyone caught the “joking” part and thought Palin was for real. They might be half right. After all, Bristol’s got to be shopping for a baby name.

More Palin: Morning News: Palin's Not Just a Snazzy Dresser ... She's a Voracious Reader!

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Babble Talk: Making a Tough Call After an Alarming Ultrasound

Jen Chaney — Thu, 16 Oct 2008 16:58:00 GMT

If you haven't yet, take a few moments to read Karen Dempsey's really touching Babble essay, "Choosing a Life." Seriously. It brought tears to my eyes.

While carrying her second child, Karen opted not to get genetic tests or an amniocentesis to determine whether her unborn child had Down Syndrome. An ultrasound revealed that the baby might have the disorder. Her doctor asked her and her husband if they wanted to get an amniocentesis as a result of that ultrasound, to be sure. They declined. They said that the outcome would not change their plans to continue the pregnancy. They left the office that day and the baby continued to grow inside Karen.

I won't reveal what happens after that -- really, you should read the whole thing -- but this dilemma has to make you pause and think. Would you opt out of the blood tests and an amnio if you thought there was little chance your baby would be at risk for Down Syndrome? And, if you later found out the baby might have it, what would you do?

With my first (and so far, only) pregnancy, I opted to take the blood test. It came back negative and consequently, I avoided the amnio. But if at some point my doctor had said that my child might have Down's, I am not sure what I would have done. I'd like to think I would do what Karen did: bravely waddle forward with my pregnancy and joyfully accept my newborn no matter the circumstances. But I haven't walked, or waddled, in those shoes. So I honestly can't say.

This is clearly a sensitive issue. But if you care to share your own experiences in this department, please do.

In Which I Find Myself in Rare Agreement with Sarah Palin (sort of)

Shannon LC Cate — Tue, 07 Oct 2008 22:54:00 GMT

Researchers at Stanford University are working on a new prenatal screen for Down's Syndrome that would be based on a maternal blood test rather than amniocentesis, taking the risk to the fetus out of the process. I fully support women having as much prenatal information as they can get. I fully support a woman's right to decide whether or not to carry any pregnancy to term. So this new test is good news.

But I wish that good information about and services for people with Down's Syndrome was growing as fast as technology to test for it prenatally. I worry not that "unborn children" will be aborted, but that fear about Down's, leading to fewer Down's births will in turn lead to less exposure to people with Down's in society, leading to...less understanding about and more fear of Down's.

The easier it becomes for typically abled people to avoid getting to know people with disabilities, the less understanding there will be of them, the less accommodation will be made for them and the smaller the range of human experience society will find acceptable. While it is every woman's personal decision to raise a child with a known disability or not, I think more would probably choose to do it if we as a culture were not so filled with fear and loathing of anyone with physical or mental ability that falls outside an ever narrower range of "normal."

I may be in the minority, but I believe people with Down's Syndrome are part of a complex range of human variance and humankind would be poorer if no more people with Down's Syndrome were ever born. Medical testing is helpful. But I hope that as a society we can expand our understanding of who is fully human to include those people with Down's who end up in our midst anyway.

Image: Huffington Post

Redefining Death to Preserve Life

Down Syndrome Teen Elected Prom King, Goes to College

Down Syndrome Teen Elected Prom King, Goes To College

Amy S.F. Lutz — Wed, 01 Oct 2008 21:23:00 GMT

I am a liberal, Jewish, pro-choice Democrat. I find Sarah Palin to be scarily conservative, excessively religious and alarmingly ignorant. I would never vote for any ticket she was on. I do, however, absolutely respect one thing about her: her decision not to abort her son with Down Syndrome, as 80% of parents do.

I never had to make that decision. But I do have a son with autism, and - like many parents of children with disabilities - have a big problem with the assumption that children who are less intelligent are somehow less human or deserving of life than "normal" kids. And more and more people with Down Syndrome are challenging those long-held beliefs all the time, by greatly exceeding society's expectations of what a "retarded" individual should be capable of achieving.

Take Zach Wincent, for example. This 19-year-old from Illinois hasn't let Down Syndrome keep him from racking up an impressive list of accomplishments, including being elected prom king, taking classes through the special needs program at Elgin Community College, coaching ice hockey, and working at Target.

Maybe, for some parents, working at Target isn't a high enough aspiration. I used to be one of those parents - before I had kids, I would imagine my future offspring and think, I don't care if they're cute, I just want them to be smart. But I've come to understand that even if my four typical kids go on to Ivy League educations and six-figure jobs, it's unlikely they'll make any greater contribution to society than their autistic brother, who's already inspired the college student who worked with him to go to graduate school and pursue research in autism. Maybe she will be the PhD who discovers the cure.

Now, my one great hope for all five of my kids is that they'll be happy. Zach Wincent seems really happy. And would anyone really suggest that his happy life is not just as valuable and important and inspiring as anyone else's?

Wincent Family Photo

Can a Mom be 'Too Dumb' to Parent?
Too Dumb to Parent: Part 2

Was Trig Palin drugged?

Brett Singer — Thu, 04 Sep 2008 18:30:00 GMT

This comes from a reader, who asked what I think is an interesting question that I haven't heard anyone else ask: how exactly is the Palin family getting Trig to stay so calm while in the public eye?

I've forgotten (or blocked out) some of what my kids were like at that age. I can say, though, that I can't imagine either of them being that calm in the face of so much clamor and activity.

One explanation is that the kid is, well, drugged. Now, I don't mean Quaaludes, just a little Benadryl or Tylenol. I freely admit that I've done the same thing, although not recently and only in certain situations, like on an airplane. The idea of doping the kids wouldn't have occurred to be except that our pediatrician suggested it. So this isn't a judgment thing, unless you want it to be.

Another possibility is that baby Trig (short for Trigonometry?) is just a mellow baby. They do exist, although in my experience they are almost as rare as unicorns. There are babies that work in television, or even theater: I saw one in a play who, much to my amazement, managed to stay quiet during a very long and loud scene.

So it's possible that the kid is just naturally low-key. But wow, talk about good behavior.

Me, I would've maybe not put the kid on camera quite so much, but that's a separate issue. (Some say that Trig "has definitely become a central prop in [the McCain] campaign," which unfortunately seems to be true.)

For those of you who currently have children that age, or who haven't erased that period of time from their memory banks, how do you think your little one would have withstood the tumult of a political convention?

image: bagnewsnotes

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Sarah Palin Did Not Give Birth to Trig the Down Syndrome Baby!

SunnyChanel — Sun, 31 Aug 2008 16:59:00 GMT

I smell a scandal! There is new evidence coming to light that is implying that perhaps Sarah Palin’s four month old son Trig, who has been diagnosed with Down syndrome, is not her son, but rather her grandson! The 44-year old mother of five was wildly applauded in the pro-life circles for seeing the birth to term after the diagnosis of Down syndrome was detected while in the womb. There is now speculation that baby Trig may actually be the offpring of 17-year old daughter Bristol.

(from Just Jared via Daily Kos)

March 6th – Sarah publicly announces she is seven months pregnant. Everyone, even close staff members were totally surprised, with no one speculating she was with child. (check out this photo taken a couple days later of the seven months pregnant Palin below)

April 16th – When in Texas for the Republican Governor’s Convention to give a keynote speech, she allegedly began to leak amniotic fluid, a full month before the due date. But she didn’t rush to the hospital but just called her doc and went on to give her speech. "I was not going to miss that speech," she says.

After speaking you’d think she rush to a local Dallas hospital but instead she hopped on an Alaska Airlines plane for an eight hour flight back home, with a stopover in Seattle. She didn’t let the airline know that she was pregnant and in labor. Most airlines require to be notified if you are seven months or more pregnant. (although Alaska doesn’t insist that passengers let them know). "Governor Palin was extremely pleasant to flight attendants and her stage of pregnancy was not apparent by observation as she didn’t show any signs of distress," Airline rep Caroline Boren said.”

She lands in Anchorage and instead of going to one of the most equipped facilities for premature births in the state, she drives 45 minutes to the Mat-Su Regional Medical Center outside Wasilla, the tiny town she was once mayor of. She “delivered” Trig one month prematurely and then returned to work three days later. “The doctor, Cathy Baldwin-Johnson, approving of all of these actions borders on malpractice. Not treating leaking amniotic fluid causes infections, and time is of the essence after water breaks. Husband Todd Palin simply delivers this winner of a line: “You can’t have a fish picker from Texas””

In regards to her daughter, at the time of her mom’s “pregnancy”, she was pulled out of high school due to catching mono. She was out of school from five to eight months (with cases of mono usually lasing 2 weeks to 3 months).

Check out the family pic of the Palins (daughter Bristol in to the right) that was published in early March where her daughter looks like she could be knocked up.

For oodles more details check out Daily Kos.

What do you think? Mom or Grandma?

Is Mental Retardation Reversible?

Amy S.F. Lutz — Wed, 09 Jul 2008 12:36:00 GMT

Revolutionary new studies have shown that learning delays caused by four common conditions can be totally reversed - but at this point, only in mice. Still, if you know someone suffering from tubeous sclerosis complex (TSC), neurofibromatosis, fragile X or Down Syndrome, then the news looks very promising.

Different scientists studying different neurological impairments are discovering that many are caused by chemical imbalances in the brain that can be rectified through the use of drugs, some of which have already have FDA approval. For example, Alcino Silva, a neurobiologist at UCLA, found that the organ-rejection drug rapamycin reversed learning disabilities in mice with TSC, a condition that affects about 1 in 6000 people and causes learning delays, autism and epilepsy.

As the parent of a child with autism, you can imagine how excited I was to hear about a possible cure for autism, even if the autism in these mice was caused by a very specific genetic abnormality. And I believe that any parents who have anxiously awaited the results of prenatal testing on their unborn children have to be thrilled by the prospect of a drug like the one Craig Garner is studying at Stanford that has reversed learning disabilities in mice with Down Syndrome.

And even if you happen to live in a bubble and know no one who cares about any of these disorders, Cambridge University neuroscientist Petrus de Vries believes that research on specific genetic conditions like these may eventually lead to advancements in the understanding of extremely common diseases such as ADHD, schizophrenia and depression. So this is good news for everyone.

Kids With Down Syndrome Walk Sooner With Treadmill Training

Karen Murphy — Wed, 31 Oct 2007 18:28:00 GMT

This is probably one of those stories that isn't going to interest more than a handful of people, being kind of special-interest and all, and maybe I wouldn't be interested if it weren't for the fact that my kid has Down syndrome and took a hell of a long time figuring out the walking thing, but hey, treadmills! and kids! C'mon, I think that's interesting! And look, I get to post a photo of my kid here! (He totally looks like he's up to no good, doesn't he? Which would be about normal for him)

But my son Eric didn't walk until he was well over three years old. Which is late even by delayed Down syndrome standards. And maybe he could have learned sooner, opening him up to a whole new world earlier. Which may have made other aspects of life easier down the road.

And kids now are walking 4-5 months sooner than they might have otherwise, simply from having therapy using a treadmill. And why is this even an issue? Who cares how long it takes kids to walk as long as they learn eventually, right?

Well, no. Being mobile means kids begin exploring their worlds. Which means synapses are firing in their little brains and they are learning things and figuring things out. They are growing their brains by being kids and playing. My son is awfully delayed. There are things he may NEVER be able to do or do well, and if a simple therapy like helping your kid take steps on a treadmill in addition to other physical therapies means eventually that kid can do more in life, I'm all for it.

"Getting infants walking is critical because so many other skills arise from locomotion: social skills, motor skills, advancement of perception and spatial cognition...The key is if we can get them to walk earlier and better then they can explore their environment earlier and when you start to explore, you learn about the world around you... Walking is a critical factor in development in every other domain."

It may be somewhat too late for Eric since he's already walking and getting into stuff, but hopefully other kids can take advantage of this. A study like this can result in equipment being made available to rent at low cost to parents so they can help their kids learn.

Remember the joy of those first steps?

Kids With Down Syndrome Are Fatter. Great.

Karen Murphy — Sun, 28 Oct 2007 17:04:00 GMT

Anybody who knows anybody with Down syndrome has already probaby noticed some of the differences in body type that people with DS have compared to others. When there are siblings involved, thse differences are even more marked, and frankly, I'm surprised that it's taken researchers this long to identify something that's pretty obvious to any parent: kids with DS have more of a hormone associated with obesity than do their brothers and sisters. Me, I can just look at my kids and see the differences.

My kids are part stick insect, I think, but my youngest, Eric, although also on the skinny side, seems to be developing a slightly different body type, one that I always attributed to him having Down syndrome. So even though he's barely on the charts in terms of weight, in appearance he's not quite as super-skinny as are his older brother and sister. But in a new study, kids with DS had higher levels of the hormone leptin than did their siblings in families who otherwise had no presdisposition to obesity. Leptin is associated with obesity, and people with DS are more likely to be obese; therefore there seems to be a correlation between leptin and Down syndrome, although researchers haven't yet uncovered the absolute cause of a propensity toward obesity in people with DS.

People with Down syndrome have all sorts of other medical issues that plague them into adulthood, even if they escape the heart defects that are generally corrected in childhood: joint and musculoskeletal problems, thyroid imbalances, Alzheimer's, and others. Although I see my son's admittedly slight plumpness as being a result of having low muscle tone and a slightly lower level of activity because being active is harder for him, as he ages it could increase and add to whatever other discomforts and dis-eases he is affected by. Obviously, being aware in childhood of a predisposition to obesity would be helpful in managing it and adjusting lifestyle to compensate, but on the other hand I see that this is also simply as a result of having a different genetic makeup.

So in other words, I'm not sure how useful this new information really is, since any observant parent would already know their kid is a little different to begin with.

Strollerderby Playdate: Parents With Something Extra

Karen Murphy — Mon, 01 Oct 2007 11:03:00 GMT

If you've been hanging out here at the SD for a while then you probably know that my younger son has Down syndrome. His name is Eric and he'll be four next month. Want to play ball with him? It's been quite an amazing journey with him, as it is with any child of course, but then there are various considerations with Eric that don't necessarily come up in the normal course of parenting unless you're another member of "the club."

And parents of kids with Down syndrome are sort of a club. There's a commonality, an understanding, that goes beyond just being fellow parents; I imagine it's the same with parents of kids with other disabilities as well. But there is quite an online Down syndrome parenting community going of support and mutual understanding. I wish I had sought it out sooner, but all things come in good time and I've met some wonderful people with whom I simply share the reality that our children have a extra chromosome.

I think you'll like them, too.

Oh, and today kicks off Down Syndrome Awareness Month, so a lot of DS bloggers will be blogging it all month long.

Christina amazes me. She's opened a Vincent shoe store recently and daily celebrates life with her prince at Prince Vince Meets the World.

Tricia at Unringing the Bell created the daily posting challenge for October for bloggers who blog about DS, and has been thinking about special education.

For some extraordinary photographs which I guarantee will put Down syndrome in a different light for you, have a look at Tara Marie's photos of her lovely daughter Emma Sage. Scroll down a bit and you'll see what I mean.

I was thrilled to read Amy's questions and doubts about what the future could hold for her daughter Stella over at Saint Nobody. They echo my own about Eric.

Sue's son Aaron is appearing on billboards all over Edmonton! I'm sure his head won't be turned (much) by all that fame.

I can't say enough about Jennifer. Her words about her son Avery are found at Mamazine, ParentDish, and soon to be unveiled in her book Roadmap to Holland, not to mention throughout her blog Pinwheels.

Can't get enough? Have a look at Rebecca's comprehensive blogroll of DS-related blogs.

Mothering a Child With Down Syndrome: One Perspective

Karen Murphy — Mon, 10 Sep 2007 13:25:00 GMT

I've been pretty public with some of the aspects, from the terrifying to the sublime, of being the mother of a child with Down syndrome. I've come to the conclusion that no one walks their own path in life except themselves, and that there is little I can add by way of description to anyone's journey but my own.

I've also said that there's an online community of blogging parents of children with Down syndrome. When I first began walking this journey almost four years ago, I had no idea such a thing existed, but I'm awfully glad that it does. One mother who particularly stands out for me is Jennifer Graf Groneberg, who blogs at Pinwheels and writes poignantly over at ParentDish and especially at Mamazine about her journey with her son Avery (isn't he gorgeous?).

Avery is Jennifer's middle child, the older of twins. There are three boys in all, and Jennifer's vignettes of tiny slices of their lives, including the parts that pertain specifically to Avery and the fact that he is a child with Down syndrome, say more and say it more poignantly than I ever could. Go read, right now, and step for a moment into the shoes and heart of a woman who loves her children and who has allowed her middle son show to her that the world is a "place of wonder".

Go and read. I promise you won't be disappointed, and I promise too that afterward you'll have just the tiniest glimpse of a wonderful world you hadn't even known was there. I know, because that's my reaction every time I read something Jennifer writes.

Arthur Miller's Hidden Son: Dealing With Kids With Disabilities

Karen Murphy — Thu, 23 Aug 2007 17:03:00 GMT

I've come to the conclusion that there's nothing black and white in life; there are always shades of gray and there's never a way to truly know what drives another person. Still, I wept when I read this Vanity Fair account of playwright Arthur Miller's son, Daniel Miller, who was institutionalized right after birth. Institutionalized because he had Down syndrome.

My son Eric has Down syndrome.

Before you go all boo-hoo and assume I'm playing the "how could he do such a terrible thing!" card, remember my first sentence there, above.

Only someone who has a child with a disability knows what it feels to have one, and truly, I only know what it feels like to have MY child-with-a-disability. If you have one, I can't assume I know what that's like for you.

And I can't judge you, or Arthur Miller, for actions you might take as a result. I can't. This is what I wrote in comment about the situation:

"Everyone has their own tolerance for what they perceive as pain, or joy, or simply Life. I cannot, any longer, be judgmental of the actions of others unless I hold myself up to a similar painful and honest viewing (and even that gives me no real right for judgment, for who can truly know what’s in another’s heart and soul?). Nor do I, on the other hand, necessarily condone actions I think I will never make.

Some things I simply must offer up as those that are part of the mysteries of life and being human."

I wrote this because I know the pain of loss that accompanies such a birth, a birth of joyous expectation that suddenly lands you on another planet. During my third pregnancy I dreamed often, nightmares, about my daughter being born with Down syndrome. Ironically, it wasn't her but her little brother who arrived with the 23rd chromosome.

Although I love him, I love him, I love him, there's also some ambivalence there. And his father refused to even speak of Eric's Down syndrome until he was about a year old. I could tell no one, had no one to grieve to. No matter the gifts that arrive with a child who is something other than what you expected, and no matter how enthusiastically you embrace those gifts, there is still a loss to grieve, a loss of the child you thought you were going to have. It's an ache that, frankly, I don't know will ever go away.

So please, if you can, don't judge Arthur Miller for his choices. Believe me, he probably lived out his hell in his own way. I can't judge him, just as I can't judge those wonderful parents who unthinkingly take all sorts of needful children into their hearts without question and fully embrace them for all that they are, instead of what they are not. So maybe I can't be those parents, and maybe Arthur Miller saw something that brought so much fear into his heart that he was paralyzed of it and did what he could to put the fear from him, the fear that, to him, manifested as a little baby boy. A baby boy who grew in spite of not knowing his father and became the warm loving human he always meant to be.

I don't judge Arthur Miller, nor do I condone him, for his actions surrounding his son Daniel. All I can do is simply offer them up as something that will remain to me a mystery, something that is not for me to know.

Yes, it's sad and it's awful that Daniel Miller lived so much of his life in what sounds like horrible conditions. It's sad that he didn't know his parents. It's sad that his parents didn't get to know what a wonderful person it sounds like he is. It's sad that so many kids with disabilities have, throughout history, been pushed aside and marginalized. There are so many sad things in life, but truly, I am thinking that this one turned out happily after all: Daniel Miller is healthy and happy. Does life get better than that? Maybe he can be a symbol, then, of a society which seems to be changing into one of acceptance.

I can only hope so, and for my part I will try to begin in my own home, for that's all I can do, really.

Prenatal Down Syndrome Test May Lead to Miscarriage

Karen Murphy — Fri, 17 Aug 2007 11:34:00 GMT

Just a few months after a new guideline was issued suggesting that ALL pregnant women undergo a "routine" and "safe" screening test for Down syndrome, it turns out that not only is the test not that scientifically useful, but it also appears to in many cases lead to unwarranted further testing which may cause otherwise unwarranted miscarriages, risking the lives of otherwise healthy babies.

Unfortunately, bad science is again at work here: the test in question is the nuchal translucency thickness scan, which is performed at 11-13 weeks gestation and is meant to measure the fluid at the back of the baby's neck. The amount of fluid is supposed to relate to Down syndrome (Trisomy 21: developmental delays and varying medical issues but typically healthy) and Edward's Syndrome (Trisomy 18: quite medically serious with a very low survival rate).

Apparently the nuchal translucency scan is not infallible and simply suggests the potential need for performing amniocentesis, which does definitively test for Down syndrome. But the nuchal test throws up false positives, causing unnecessary worry and often a needless additional (and risky) test. According to recent calculations, there would be 160 healthy babies lost for every 50 cases of Down syndrome or Edwards Syndrome detected, based on miscarriage rates from amniocentesis.

Listen, my younger son has Down syndrome so I definitely know all about this issue. I didn't have any prenatal testing but that was my choice at the time. If you're pregnant and freaked out about the potential of having a baby with Down syndrome, I suggest you explore that fear further. Meet some parents of kids with DS. Meet the kids. Educate yourself. Think about what your fears are. And then have the test, or don't have the test, based on what you know. But what happens if you blindly follow your OB's (outdated) advice and have the nuchal test? What are your options then? What if it's positive (which could be a false-positive result)? Do you have the amnio? Even knowing the risks? And then what, if anything, are you prepared to do with the information once you have a result? In other words, would it change anything for you?

These are HUGE issues when you're supposed to be enjoying a pregnancy and the upcoming birth of your child. I'm just saying to know what you're getting into. And that it pisses me off that we're supposed to rely on science to guide and support us. When there's bad science and we make decisions relying upon it, well, then I get angry.

Bookshelf: Gifts: Mothers Reflect on Down Syndrome

Karen Murphy — Fri, 13 Jul 2007 13:37:00 GMT

I've been waiting for this book to come out for over a year now, and it's finally here. Many of you are aware that my youngest son Eric, three, has Down syndrome. Blogging parents of kids with DS are a pretty tight bunch; as you can imagine we seek one another out, for support and understanding. So it's natural that I know, through the blogosphere, many of the moms and kids in this book, entitled Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.

Gifts is a collection of stories of mothers reflecting on how Down syndrome has changed their lives. If you're contending with any sort of special-needs issues, you'll know exactly what I'm talking about. It changes you, not for worse or necessarily for better, just...different. There's an essay familiar to anyone in the DS world called "Welcome to Holland," which can help you understand what I mean.

I was too late to make the cutoff to contribute to Gifts, but I did write my own story about Eric's birth and diagnosis and my journey with it and him. And my web designer friend Rebecca designed this gorgeous photo montage for the book's website as well as the site itself plus did my wonderful header. I'm thankful there is a DS community and I'm thrilled that perhaps this book can help change people's perspectives about Down syndrome. I could have used it or something like it four years ago.

Doesn't the photo just say everything?

Congresswoman's Baby Has Down Syndrome

Karen Murphy — Thu, 31 May 2007 23:35:00 GMT

Dear U.S. Rep. Cathy McMorris Rodgers,

I read recently that your new baby has been diagnosed with Down syndrome. Believe me, I can completely relate; my son Eric is now three and it wasn't long ago that I began the same journey of grief and acceptance that you are beginning. (This is him in the photo; isn't he beautiful?) I have a few words of advice for you.

First, don't listen to anyone else. That's right, not even me. Only you know best what's right for your child. There are plenty of "experts" out there who will be more than happy to tell you what your son Cole's life will look like. Don't believe them. Right now, his possibilities are endless. Know that, truly believe that, and they will be so.

Next, listen to anyone you can (you're saying "huh?" right about now, I can tell). There is an enormous amount of information out there. Learn to take it in small-enough doses so that you can sift through it intelligently. Join parenting support groups, online support groups. Acquaint yourself with the Down syndrome culture out there. Realize what wonderful, beautiful, amazing things that other kids with Down syndrome are doing and what their parents are doing to help them get there. I guarantee you'll be surprised. Look, too, at the number of adults with Down syndrome you suddenly see in surprising places. Try to see Cole's life through their eyes.

Third, this baby is here to teach you something. There is not a person with Down syndrome I have ever run across who doesn't seem to be on a mission of some sort, if only to spread love and joy or simply acceptance around them. Not a bad calling, if you ask me.

Lastly, allow yourself to really grieve for the child you didn't have. We all go through this, and it's okay. A dream died when you were told who Cole really is, and you should allow that death to settle. And then look into his beautiful eyes and really say hello to your tiny son. Then you can see him for who he is.

Hugs,

A mama who's been there

P.S. I forgot to mention: with your visibility and your political knowhow, maybe you could help make a difference for other kids with Down syndrome too.

Family Rides Bikes Cross-Country For Down Syndrome

Karen Murphy — Sat, 12 May 2007 18:48:00 GMT

The Thompson family of Arkansas is leaving today on a 1300-mile odyssey together. Eight kids, ages 7-20, two parents. All riding bikes. My butt hurts just thinking about this. Their seventh child of eight, 11-year old John, has Down syndrome and they're riding over the next several weeks to promote awareness and to connect with other parents of children with DS.

I cannot imagine herding eight kids around on bikes like that, but large families likely get used to a variety of challenges. I think it's wonderful. If you see them, give them a honk. They're still scouting out places to stay along their route and may need donations, too, to cover expenses.

One Mom, One Child: The Gift of Down Syndrome

Karen Murphy — Wed, 04 Apr 2007 18:05:00 GMT

As the mother of a child with Down syndrome, I cannot help but be thrilled when I read articles like Abigail Braithwaite's heartfelt essay about life with her daughter with Down syndrome in yesterday's Washington Post. Her experiences with her nine-month-old daughter Adara seem to mirror my own with my son at that age in so many ways, and her frankness about her life with this tiny, charming girl is refreshing. In order to truly educate people on what it's like raising a child with special needs, it's important to tell the whole story: the tears of frustration over things you cannot control, the myriad ways you have to develop of doing things differently just to help your child survive, the grief for the child you thought you were going to have, and finally the acceptance and realization of just who it is that's come to live with you and give to you their extraordinary gifts.

Abigail's essay will likely help bring about new perspectives to people about what it's like to raise or be a person with Down syndrome. For her, it's summed up this way: "I have long said I am one of the luckiest people I know. This belief has been shaken a couple of times in the past months, but I will stand by those words today. Life is a wild journey; our job is to make the most of it."

I'll add to it: I cannot imagine my life without my son Eric, now that he is here. My life and my perspective about so very many things have changed immensely because of him, and I can't wait to see him continue to bring his gifts to me, my family, and to everyone he meets.

New Hope for Down Syndrome?

Karen Murphy — Tue, 27 Feb 2007 15:03:00 GMT

News like this makes a parent like me feel their heart leap into their throat. My youngest son has Down syndrome. This is him here; isn't he gorgeous? He's an incredible little boy, and I know I wouldn't change a thing about him, yet....would I? Would I give him the opportunity to learn at the same rate as other children by giving him a drug that seems to have this effect?

A new study reveals that mice tinkered with genetically to match the triple-chromosome found in people with Down syndrome learned faster after being given a drug, pentylenetetrazole (PTZ), that was once used to treat epilepsy. The drug works by regulating the amount of a neurotransmitter chemical called GABA, which stops brain cells from becoming too excited. Normal learning takes place when there is a precise balance between the brain cells being excited and inhibited. It is thought that people with Down syndrome have too much GABA, which makes it difficult to process information.

The effects of the PTZ on the mice, who had exhibited many of the cognitive difficulties experienced by people with Down syndrome, was remarkable and lasted well after they ceased being given the drug. PTZ will not affect other conditions already experienced by people with Down syndrome such as heart defects, increased incidence of leukemia and Alzheimer's Disease, and other medical issues. But it could give them a more "normal" life otherwise. People with Down syndrome typically exhibit a wide variance of mental disability, from mild to moderate.

I'm so incredibly torn here. I love my little boy the way he is. It's part of WHO he is. But here may be a chance for him to be more. Yeah, I read "Flowers For Algernon." If it were your child, would you take such a chance? Would you maybe change the essence of your child to give him a different place in society?

Strike Three for Diversity" New Prenatal Testing Guidelines Require Down Syndrome Screening

Karen Murphy — Wed, 03 Jan 2007 12:01:00 GMT

The American College of Obstetricians and Gynecologists has recently issued a new guideline suggesting that every mom-to-be, regardless of her age, undergo a screening test for Down syndrome. As the mother of a 3-year old who happens to also have Down syndrome, this new guideline is of particular interest to me.

The previous guideline recommended prenatal testing at or above age 35, but the age delineation has been dropped because the medical community finally got wise to what moms and dads have known all along, that there is no magic jump in the incidence of babies born with Down syndrome at the maternal age of 35. Indeed, though there is a gradual statistical increase in risk -- from one in 1,200 at age 25 to about one in 300 at age 35 -- women under 35 actually give birth to most of the babies born with Down syndrome.

The newest testing method is a first-trimester screening that combines blood tests with an ultrasound exam, called a "nuchal translucency test", that measures the thickness of the back of the fetal neck. The test is performed between 11 and 13 weeks gestation, and is considered "more than 80% accurate". Although this is all well and good, and may well avoid some unnecessary amniocenteses and therefore the fetal risk associated with that more invasive test, I have to wonder -- what exactly are people going to do with this new information?

I had no prenatal testing with my son. If I had done so and the test correctly suggested that my son would have had Down syndrome, I would have immediately been bombarded with pressure from all over to "do something" about the baby, to "make a decision". Hello? What, exactly, is there to do? A baby is a baby. Where do you draw the line? Babies with Down syndrome are "okay", but babies with, say, more serious issues, or expensive-to-treat medical issues, are not? Or, a baby with Down syndrome would be okay, but only if he is "high-functioning". Right?

For perhaps the first time ever I can say I side with a Catholic group who states, "...it could lead to women seeing that because their child has a genetic defect that they would seek an abortion". Since when did eugenics creep so stealthily into our accepted medical midst? What happened to "inclusion" and "diversity"? Is this, really, where we as a society wish to head? Take another look at that baby up there and then tell me.