Monthly Archives: December 2017

The problem with Ohio’s Down syndrome abortion ban

Look for the fishies at the KCL pond

In many serious discussions about Down syndrome, abortion is the ghost in the room.

Teaching medical professionals to give accurate and appropriate information when announcing prenatal diagnoses, state funding for early interventions, state funding for K-12 education, federal funding for research, even health care costs — these issues either directly or indirectly relate to the abortions of fetuses with Down syndrome (DS).

I was in my 40s when pregnant with my last two children and knew I had an increased risk of having a baby with Down syndrome. However, I allowed only non-invasive testing because I would not have terminated a pregnancy due to a diagnosis of DS.

With both pregnancies, I was told there were no concerns based on the results of blood work and high-level ultrasounds. At the birth of my last child and only daughter, Lyra, we immediately recognized two markers of Down syndrome, the shape of her eyes and her sandal toes (each big toe is located far from the four smaller toes, as if designed for flip-flops). Later that week, genetic testing confirmed the diagnosis.

We quickly learned that what we thought we knew about Down syndrome was little and mostly incorrect. As a writer, I process difficult issues and emotions by writing. Three months after Lyra’s birth, I began blogging at Whoopsiepiggle.com, documenting my development as a mother of a child with DS.

Our love for Lyra was immediate and fierce. Max and I felt like we were taking a crash course on DS. We worked to give her the best start possible, including regular speech, physical and occupational therapies. But our first years as parents of a child with DS were also filled with enormous fear. On top of that, I was overwhelmed parenting three teens and two tots, regardless of Lyra’s diagnosis.

Soon, we understood that there has never been a better time to be born with DS. In a column on May 6, 2017, “Busting myths on life with Down syndrome” (http://bit.ly/2E9onV4), I outline how people born with DS today can expect to lead lives more alike than different from their typical peers.

Knowing what I do now, I would encourage any woman who receives a prenatal diagnosis of DS to learn the current facts and strongly consider continuing her pregnancy, even if she feels she would give the child up for adoption (the waiting list to adopt a baby with DS is longer than that to adopt a typical baby).

Avoid bias

I speak each fall to first-year medical students at Case Western Reserve University. I encourage them to guard against bias when interacting with patients who have disabilities and their parents.

And yet, this past fall, I told the students that I and many, though not all, parents of a child with DS oppose the state bill outlawing the abortion of a fetus prenatally diagnosed with Down syndrome.

Nobody likes abortion, not even abortion rights advocates. But, legal or not, abortion has been around as long as pregnancy. The solution to lowering abortion rates is to find out why women have them and address those issues.

I learned at the National Down Syndrome Congress convention in 2014 that the termination rate of fetuses diagnosed with DS is higher in Southern states, where elected officials are overwhelmingly Republican and abortions harder to obtain, than in cities in the North. The reason given is simple — services and supports for children with disabilities are limited in many parts of the South.

In recent years, Denmark and Iceland have adopted policies to entirely eliminate people with DS from their populations. All women receive free prenatal testing in these two countries and are encouraged to terminate when a fetus is discovered to have DS.

Most do, but not all. I know a woman raising a child with Down syndrome in Denmark. Because there are so few children with DS in that country, supports are commensurately limited. And this, I suspect, contributes to many other women choosing not to carry a fetus with Down syndrome to term.

Ethicists around the globe have called for women to terminate pregnancies of children with DS. Richard Dawkins, a Brit, claims doing so reduces suffering. This flies in the face of all research conducted on people with DS and their families.

Australian ethicist Peter Singer, much of whose work I find enlightened and inspiring, believes fetuses with DS should be aborted because they increase the cost of health care for the rest of a country’s citizens. Determining the value of a human life based purely on cost is a slippery slope. What happens when one day we can prenatally test for schizophrenia, bipolar disorder, autism or addiction?

Funds for testing

In the United States, funding for DS research overwhelmingly favors further development of prenatal testing over the development of drugs to improve health and cognition. The primary point of prenatally diagnosing a fetus with DS is to allow for the option of termination. Thus, federal research dollars effectively promote elimination over amelioration.

I know a family who moved back to Northeast Ohio shortly after giving birth to a son with DS. The region where they were living in Michigan had little access to the medical care and educational programming important for a child with DS.

I know a family that moved from Akron to Bath because they felt their child with DS would receive a better education, with more supportive services, in Revere schools than in Akron Public Schools.

In Ohio, the state provides services to children with DS through the county developmental disability (DD) boards for the first three years of life. Then, from age 4 to 22, state services are administered through the public schools.

Our statehouse is controlled by the Republican Party and has been for many years. The same legislators who voted to outlaw abortion of fetuses with DS also voted this past year to remove language that would have increased funding to county DD boards.

The federal Individuals with Disabilities Education Act guarantees as a right for children with disabilities, including DS, a free, appropriate public education. And yet everyone knows all Ohio school districts are not created equal. Some families, like the one I mentioned, move to districts with better resources. But for many that is not an option.

Furthermore, just because a child is guaranteed an education doesn’t mean schools comply, and parents regularly sue school districts for enforcement. Here in Ohio that happens in the Sixth Circuit of the U.S. Court of Appeals.

The Sixth Circuit has a mixed record with disability rights. A recent decision stated a school could not be penalized for strapping a preschool child with disabilities to a toilet with a leather belt because it was part of the school’s pedagogy. Think about that.

Ultimately, I believe underlying the move to eliminate people with Down syndrome is a bias against people perceived to have lower intelligence. Therefore, this is for me an issue of civil rights.

Which is why it’s important to point out that the law outlawing the abortion of fetuses with DS has little, if anything, to do with protecting people with DS. If our state legislators truly cared about this population, they’d put our money where their mouths are.

They’d adequately fund county DD boards, including everything from early interventions for babies to job training and housing with qualified, well-paid staff for adults.

All of Ohio’s public schools would receive the funding to provide equitable education for all students, including those with developmental or intellectual disabilities.

Today, Ohio women wanting to terminate a pregnancy in which the fetus has been diagnosed with DS will need to travel to a state where it is legal. And those who do not or cannot will find themselves in a state that inadequately addresses the needs of their children.

Give Generously and Benefit Greatly

Give generously. While this may sound like a contradiction to my previous column on giving lightly, it is not. Let me explain.

Falling prey to the Madison Avenue depictions of Christmas trees exploding with wrapped gifts from under their boughs will not bring endless happiness to your children. In fact, it is more likely to promote agitation.

Consider instead giving a few choice presents while using this festive season to talk to your kids about the benefits of charitable giving.

Every December solicitations from non-profits fill both email and postal boxes. Give to a charity before the New Year’s Eve ball falls on Times Square and another tax deduction for the year may be gained.

Christians take to heart Matthew 25:34-40 in which God blesses those who give to people in need and visit the sick and imprisoned, for it is the same as giving to the Lord. We who live in warm homes with stocked cupboards and closets full of clothes and shoes are indeed fortunate.

In December 2010, I read an article to my boys from Parade magazine on the Shoestring Philanthropist, Marc Gold. In 1989, Gold toured India and found small donations were often life-changing or even life-saving. One dollar bought antibiotics for a woman who would have died without them. Thirty-five dollars bought her a hearing aid that allowed her to return to work.

Impressed by how such small sums of cash could bring such great good, Gold asked 100 of his friends to donate a little money. They did and his non-profit, 100 Friends (100friends.org), was created. Through 100 Friends, Gold has helped thousands of people in more than 50 developing countries.

Lead by example

Children take most to heart not what we parents tell them, but what we do. And what I show my children, I hope, is that while generosity is highlighted at this season, it should not be restricted to one month of the year.

With a credit card, I make monthly, automatic donations to several non-profits that are important to me. While my kids couldn’t list these organizations, they know there is a list and that WKSU is on it (a dollar a day) because I dole out the members’ swag. My boys proudly wear sweatshirts, scarves and hats bearing our NPR station’s logo.

Last December at age 16, Jules gave to the Coral Reef Foundation and the Rainforest Trust. He also bought his first Federal Duck Stamp. Issued by the U.S. Fish and Wildlife Service, the Federal Duck Stamp is one of the oldest conservation efforts in the nation, having raised over $950 million since it was introduced in 1934.

Giving one-time or monthly gifts are great ways to help organizations doing valuable work. But what about the people in your daily life? Those people who, throughout the year, make you look good, live well, and give you added time by doing work so you don’t have to?

Because you are a faithful subscriber to Ohio’s best daily newspaper (right?), you know your paper carrier is up long before sunrise, delivering the Akron Beacon Journal to your door before your alarm clock bleats. This month, give your carrier a card with some cash in it. We give $20.

Rain, snow, sleet and heat waves are nothing for the men and women of the U.S. Postal Service. Not only do they bring your mail six days a week, mail carriers are the eyes and ears of a neighborhood. Your mail carrier may one day stop a crime or save your life. Again, give them a card with some cash.

If you are so lucky as to have someone else clean your house, give a year-end bonus. And for the love of all that is right in the world, if you leave town for the holidays and won’t need your home cleaned, still pay the person! Your cleaning person’s bills do not go away when you do.

You put your head in the hands of your hairdresser several times a year. It’s nothing short of foolish not to tip them well. Tip generously all year and you’ll hardly notice the difference, but your stylist will. The same goes for nail technicians. And at the end of the year, tip extra.

I wish everyone had to work as a server the summer before graduating high school. Thereafter, when dining out all people would always tip well and behave graciously. Ohio’s minimum wage for tipped employees is currently $4.05 an hour. Nobody can earn a living wage on $4.05 an hour.

Tip well because it’s the right thing to do.

How much? Twenty percent is an easy sum to mentally calculate and in most cases — whether tipping a server, hairdresser or nail tech — the difference between 15 and 20 percent is little more than a cup of Starbucks coffee.

Giving benefits givers

Giving generously benefits not only the recipient but also the giver. Repeatedly, studies have shown people with fewer resources give more generously, and more often to strangers, than the wealthy. The less you make, the more you understand the struggles of others.

And yet the wealthiest person can benefit from philanthropic giving, even when initiated for less than charitable reasons.

Few may remember that in the 1990s, Bill Gates was almost universally despised. In 2000, a U.S. federal judge determined Microsoft had engaged in anti-competitive practices resulting in a monopoly that should be split apart. I was pregnant with Jules and remember everywhere I’d go people were having schadenfreude-filled discussions about the decision.

Today Jules is 17 and most people think Bill Gates is a pretty nice guy. What happened? That same year the U.S. justice department was going after Microsoft tooth and claw, Gates and his wife Melinda launched the Gates Foundation. Coincidence? I don’t think so.

Like many at the time, I believe the Gates Foundation was created to improve public opinion of Bill Gates and his mega corporation, Microsoft. But I also believe, as is often the case with philanthropists, that the work of the Gates Foundation has changed its funder for the better.

Fighting hunger, disease and overpopulation, while also working to improve education, in over 100 countries has made Mr. Gates a passionate advocate of those who are the least among us.

So please, give generously for everyone’s sake, including your own.

Merry Christmas!

This column first appeared in print in the Akron Beacon Journal on December 17, 2017

Giving lightly is good for kids and the planet

My eldest child will turn 24 next month. This means I have been acquiring toys for nearly a quarter of a century.

That first year I was a mother, we often visited friends who had a 3-year-old. In their living room were neatly organized baskets filled with animal figures, blocks, books. I was in graduate school at the time (read: poor) and remember wondering if my little boy would ever have such lovely toys.

Now I envy the clutter-free sparseness of those early years.

In the mid-’90s, I scoured thrift stores where I scored wooden train sets and, years before they became collectors’ items, old Fisher-Price toys. We have the wind-up record player, the wind-up radio, the barn set and many animals.

Over the years, I chose toys thoughtfully. Few were plastic, none electronic. Blocks, puppets, animal figures, wooden train sets, games, puzzles, Magnetix and lots of books.

The year my third son turned 10, I likely would have begun shedding our toy collection.

But instead, I gave birth to my fourth son. And so I kept all we’d acquired in the 16 years before Leif was born. And though he was born into a household with an enviable collection of toys, not surprisingly, he still expects presents.

The cost of too much

Kim John Payne is a family therapist and educator whom I heard speak many years ago. After working in refugee camps with children who never knew anything but uncertainty due to war, Payne moved to London. There he discovered middle-class children exhibiting similar symptoms of post-traumatic stress disorder (PTSD) as refugee children, though they’d not experienced traumatic events like the refugees.

What gives? Payne coined the term “cumulative stress reaction” or CSR, and claims that both groups of children were suffering from overactive amygdalae, the part of their brains that controls survival instincts, i.e., what to do when threatened. Fight? Run? Freeze?

In his book Simplicity Parenting, Payne recommends a number of things to restore calm to the children suffering from CSR. What struck me most were his visits to the homes of families in his therapy practice. He’d arrive while the child was at school. In the child’s bedroom with the parents, Payne would pull out a garbage bag and tell the parents to fill it.

Inevitably, this task was difficult. Each toy, book, trinket was somehow special but Payne was uncompromising and the bag was filled. And then he’d pull out a second bag. And then a third.

“What happens when your child only has 10 books to choose from? Predictability, that’s what,” Payne said when I heard him speak.

Yes, I’m sure most kids who returned home to discover themselves relieved of three trash bags of toys were none too happy about it. But who does not feel calmer and think more clearly after finally clearing off a cluttered desk, room or home?

Christmas roundup

Now here comes Christmas. (Yes, these Buddhists celebrate Christmas with gusto.)

Most years I assess things during the first weeks of December. Games and puzzles with missing pieces are tossed, as are books with missing pages. Anything broken is also chucked. Toys everyone has outgrown are donated. (I keep a small box of toys for visiting babies and toddlers.)

When the big boys were little, the only gifts I bought them were stocking stuffers. The big gifts were what the relatives sent. They still had plenty.

Leif was nearly 3 years old when he had an inkling of what’s happening on Christmas morning. He pulled the paper off his first present, a small set of Thomas the Tank Engine trains and a floor map on which to move them about. Leif played with Thomas not only the rest of Christmas Day, but also for a week or more while all of his other presents remained wrapped and under the tree.

I still fill the stockings. But now the big boys get more practical things like lip balm, gift certificates, shaving cream. Under the tree, I give them what I want to receive: Good socks. I believe good socks and underwear go a long way in making life better. If you doubt me, think how miserable uncomfortable underwear and droopy socks make you feel.

Here’s an unabashed product plug: Bombas socks. I’ve given each of the big boys two pairs of their merino wool socks for a few years now. For each pair of socks purchased from Bombas, the company donates a pair. According to their website, socks are the No. 1 item requested in homeless shelters and Bombas has donated over 5 million pairs of socks to date. Now that’s an all-around feel-good gift.

The truth is, while the big boys like Christmas presents, without childhood magic, it’s just a relaxing morning in our pajamas. Last year, Claude told me the best part of Christmas for him now is watching people open the gifts he’s given them.

Buy, buy, buy

Maybe one day we’ll be one of those families who take a trip over the last week of the year. But for now, we still have our two littles, Leif and Lyra. And I admit, each year I struggle to fight the crushing message to buy, buy, buy!

It is well documented that Americans disproportionately consume the earth’s resources when compared not only to Third World and developing countries, but also other industrialized nations. A continuous loop of manufacture, sell, use briefly and discard underpins our economy.

Nonbiodegradable plastics fill our landfills and waterways. Microplastics have entered the marine food chains, which should be a concern for anyone who eats seafood.

I work part-time in a store that sells toys and other really cool things, and I am just as susceptible in the final days of holiday shopping to worry that I have enough for each person to unwrap. In my office closet are toys I bought last December. As we were frantically wrapping everything after the littles had gone to bed last Christmas Eve, I realized it was too much.

And what does giving too much end up doing to your children? Well, possibly giving them a version of PTSD. It’s not good for the planet and it’s not good for the kids.

I intend to give lightly this Christmas, purchasing just a few quality items my family members need. With my intention published in this paper, perhaps this year I can resist the pressure and temptation to spend more than I should on things we don’t need.

Heck, once I wrap the toys hiding in my office, I’m quite possibly done!

This was first published in the Akron Beacon Journal December 3, 2017

Giving Lightly–It’s Good All Around

My eldest child will turn 24 next month. This means I have been acquiring toys for nearly a quarter of a century.

That first year I was a mother, we often visited friends who had a 3-year-old. In their living room were neatly organized baskets filled with animal figures, blocks, books. I was in graduate school at the time (read: poor) and remember wondering if my little boy would ever have such lovely toys.

Now I envy the clutter-free sparseness of those early years.

In the mid-’90s, I scoured thrift stores where I scored wooden train sets and, years before they became collectors’ items, old Fisher-Price toys. We have the wind-up record player, the wind-up radio, the barn set and many animals.

Over the years, I chose toys thoughtfully. Few were plastic, none electronic. Blocks, puppets, animal figures, wooden train sets, games, puzzles, Magnetix and lots of books.

The year my third son turned 10, I likely would have begun shedding our toy collection.

But instead, I gave birth to my fourth son. And so I kept all we’d acquired in the 16 years before Leif was born. And though he was born into a household with an enviable collection of toys, not surprisingly, he still expects presents.

The cost of too much

Kim John Payne is a family therapist and educator whom I heard speak many years ago. After working in refugee camps with children who never knew anything but uncertainty due to war, Payne moved to London. There he discovered middle-class children exhibiting similar symptoms of post-traumatic stress disorder (PTSD) as refugee children, though they’d not experienced traumatic events like the refugees.

What gives? Payne coined the term “cumulative stress reaction” or CSR, and claims that both groups of children were suffering from overactive amygdalae, the part of their brains that controls survival instincts, i.e., what to do when threatened. Fight? Run? Freeze?

In his book Simplicity Parenting, Payne recommends a number of things to restore calm to the children suffering from CSR. What struck me most were his visits to the homes of families in his therapy practice. He’d arrive while the child was at school. In the child’s bedroom with the parents, Payne would pull out a garbage bag and tell the parents to fill it.

Inevitably, this task was difficult. Each toy, book, trinket was somehow special but Payne was uncompromising and the bag was filled. And then he’d pull out a second bag. And then a third.

“What happens when your child only has 10 books to choose from? Predictability, that’s what,” Payne said when I heard him speak.

Yes, I’m sure most kids who returned home to discover themselves relieved of three trash bags of toys were none too happy about it. But who does not feel calmer and think more clearly after finally clearing off a cluttered desk, room or home?

Christmas roundup

Now here comes Christmas. (Yes, these Buddhists celebrate Christmas with gusto.)

Most years I assess things during the first weeks of December. Games and puzzles with missing pieces are tossed, as are books with missing pages. Anything broken is also chucked. Toys everyone has outgrown are donated. (I keep a small box of toys for visiting babies and toddlers.)

When the big boys were little, the only gifts I bought them were stocking stuffers. The big gifts were what the relatives sent. They still had plenty.

Leif was nearly 3 years old when he had an inkling of what’s happening on Christmas morning. He pulled the paper off his first present, a small set of Thomas the Tank Engine trains and a floor map on which to move them about. Leif played with Thomas not only the rest of Christmas Day, but also for a week or more while all of his other presents remained wrapped and under the tree.

I still fill the stockings. But now the big boys get more practical things like lip balm, gift certificates, shaving cream. Under the tree, I give them what I want to receive: Good socks. I believe good socks and underwear go a long way in making life better. If you doubt me, think how miserable uncomfortable underwear and droopy socks make you feel.

Here’s an unabashed product plug: Bombas socks. I’ve given each of the big boys two pairs of their merino wool socks for a few years now. For each pair of socks purchased from Bombas, the company donates a pair. According to their website, socks are the No. 1 item requested in homeless shelters and Bombas has donated over 5 million pairs of socks to date. Now that’s an all-around feel-good gift.

The truth is, while the big boys like Christmas presents, without childhood magic, it’s just a relaxing morning in our pajamas. Last year, Claude told me the best part of Christmas for him now is watching people open the gifts he’s given them.

Buy, buy, buy

Maybe one day we’ll be one of those families who take a trip over the last week of the year. But for now, we still have our two littles, Leif and Lyra. And I admit, each year I struggle to fight the crushing message to buy, buy, buy!

It is well documented that Americans disproportionately consume the earth’s resources when compared not only to Third World and developing countries, but also other industrialized nations. A continuous loop of manufacture, sell, use briefly and discard underpins our economy.

Nonbiodegradable plastics fill our landfills and waterways. Microplastics have entered the marine food chains, which should be a concern for anyone who eats seafood.

I work part-time in a store that sells toys and other really cool things, and I am just as susceptible in the final days of holiday shopping to worry that I have enough for each person to unwrap. In my office closet are toys I bought last December. As we were frantically wrapping everything after the littles had gone to bed last Christmas Eve, I realized it was too much.

And what does giving too much end up doing to your children? Well, possibly giving them a version of PTSD. It’s not good for the planet and it’s not good for the kids.

I intend to give lightly this Christmas, purchasing just a few quality items my family members need. With my intention published in this paper, perhaps this year I can resist the pressure and temptation to spend more than I should on things we don’t need.

Heck, once I wrap the toys hiding in my office, I’m quite possibly done!

This was first published in the Akron Beacon Journal December 3, 2017