Angels Among Us: Dr. Alberto Costa and Friends who Create Level Playing Fields

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Advocacy, Alberto Costa, Blogging, Down syndrome, Early Education, Education, Faith, Family, Fate, German language, Gratitude, Iowa, Living in Hawaii, Marathon training and running, Peace and non-violence, Pediatrics, Philanthropy, Quakerism, Trisomy 21

My posts have an Iowa theme this week.

Before my family and I moved to Hawaii three years ago, we had returned to the United States after living in Germany with our baby daughter. We were looking for a permanent home, a safe haven for two dads with their first child. Having lived in community before, an opportunity to work for and reside at a Quaker boarding school and farm in Iowa with gentle rolling hills and gentle, intelligent Quakers seemed to me like just the right ticket to make it back to America.

And even given those circumstances, a ticket to a world full of unknowns.

What would my new job, a new state where none of us had lived before, new pediatricians, new neighbors and community be like? Ben and I would be coming back into the American language and customs and traditions after living pretty much like most native German speakers would during our time in Europe.

We switched languages although I continued (and continue) to speak to our daughter in German. We had started to make inroads in Germany with a promising network of friends, but now we sought connections in the United States.

I’m pretty good at cold writing and calling people. I like reaching out, finding common ground. My husband does, too, but he is more reserved. A Harvard-educated linguist, he devours complex medical texts. We make a good team. I find articles with information I think could be helpful for our daughter, and he reads them after I do and gives me his take. Then we decide if there is a next step.

One of those articles was in The New York Times about a doctor, Alberto Costa, whose life and work changed completely soon after his only child was born 22 years ago.

A physician and neuroscientist, Dr. Costa’s joy that my husband and I met 15 years later when our own daughter came into the world was accompanied by the realization that the marathon of parenthood had suddenly turned into an ultramarathon.

Facing the knowledge that his baby girl had been born with three copies of all or most of the genes on the 21st chromosome, instead of the usual two, Dr. Costa entered a brave new world of disbelief mixed in perhaps with a little grief and urgency.

Dr. Costa’s dreams for his daughter Tyche, like ours for Ellen, now rested on a marathon course filled will all kinds of potential detours and questions. Would their future hold limitless potential? Would they be able to freely and boldly pursue careers, meaningful relationships, compete with other girls their age, navigate social pressures, deal with conflicting messages about how they should act and who they should be? What about their confidence? What about their vulnerability?

I only know that the first time I held my daughter, those questions remained but I felt a new calling: to be my daughter’s advocate, to help her acquire every tool possible for her life toolkit, to go outside my comfort zones at times if she were able to benefit from my doing so.

Reading the Times article about Dr. Costa and Tyche on a cold morning in Iowa, about his decision that after Tyche’s birth he would devote himself to the study of Down syndrome, I realized I needed to see if he were interested in a friendship with our family.

I found an email address for him and sent him a few words about Ellen and her picture. I mentioned that like his daughter, Ellen would be described as “high functioning,” although, truth be told, I much prefer “high achieving.” Why? I don’t always think of myself as high functioning! But I always hope to achieve a little something each day!

I thanked Dr. Costa for his research and offered my modest support for his goals to improving the quality of life of persons with an extra chromosome.

He wrote back! He described his hope that children of our daughters’ generations would gain from his research.

Time passes. My family moved to Hawaii. A few years after we had settled into life here, I began this blog. I wrote Dr. Costa again.

Here is part of his return message:

It is good to hear from you after such a long time.

We have made significant progress … and have learned quite a bit more about the specifics of the biology behind some of the cognitive and other brain issues in persons with DS.

Dr. Costa is raising funds for his research at Case Western Reserve University. Here is the link to his profile and work. I know he may well make the path my daughter follows in her life a little or a lot smoother.

Ben and I feel blessed for all the people we have met since Ellen was born who have gone out of their way to help clear her path, to give her a chance at having equal footing in the marathons she will face.

They sure don’t have to, but we will be forever grateful for the time and love they have given our family.

Level Playing Field of Dreams

Tags

Advocacy, Blogging, Civil Rights, Community, Early Education, Education, Faith, Family, Fate, Iowa, Living in Hawaii, Philanthropy, Tennis, Trisomy 21, Wimbledon

Dear Readers,

Did you know Iowa has its own version of Wimbledon?

Appropriately, it is called the All Iowa Tennis Club: a grass tennis court on a family farm surrounded by a well-tended, short white fence in the middle of fields that stretch evenly as far as the eye can see.

It took 14 months to build after years of hope, research, planning, and perseverance.

The public is invited to make court reservations. Homegrown strawberries are served. A youth tennis league learns the wonders of grass court tennis every year on the court.

For tennis fans young and old, it is truly a field of dreams. I wish I had played at the All Iowa Tennis Club. I had begun to make travel plans with a friend, but out of nowhere a job opportunity came about and my family and I moved to Hawaii.

But I’m always thinking about level playing fields, whether they offer opportunities for folks from all walks of life to enjoy baseball, tennis, safe and sustainable communities, education.

Yesterday I wrote about The Village Community, an amazing living/learning/working center in Iowa begun by parents of children with “disabilities” who dared to dream of a place where everyone is valued for his and her gifts to the world.

If only the new United States Secretary of Education, and more members of the Senate and House of Representatives were truly invested in giving everyone a level playing field and greater access to services whenever possible in integrated settings.

Unfortunately, many people — not just those with “disabilities” — are feeling pretty vulnerable since the national elections last November.

Speaking out about Civil Rights has become more important and necessary than perhaps ever before in our nation’s history.

Since I began this blog a year ago, I have learned what I already knew: telling our stories can make change for the better.

So let’s tell them whenever we can even if it means going out on a limb or out of our comfort zones sometimes. If they are worth telling, they will find resonance and build trust, hopes, community, and yes, fields of dreams.

 

It Takes a Village!

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Advocacy, Blogging, Civil Rights, Community, Diversity, Early Education, Education, Environment, Faith, Family, Friendship, Iowa, Living in Hawaii, Philanthropy, Quakerism, Trisomy 21

For my last entry I posted a beautiful painting from my friend Matthew, a view from our last home before we moved to Hawaii. We lived in an intentional Quaker learning community and farm in Iowa.

Our daughter was just a year and a few months old when we moved to Iowa from Germany. Although born with an extra chromosome, she was alert and curious. She took in and responded to songs, poems, and books in English and German her fathers read to her several times a day. She could do everything most babies do!

The shock of our beautiful baby girl coming into this world with an extra chromosome gave another dimension to the steep learning curve of parenting a first child. We knew finding a great community would give our daughter advantages we might not be able to on our own. It was the main reason we left Germany where Ben and I felt at home in the German language, enjoyed many friendships, but also saw that most people would not consider “the sky’s the limit” for Ellen. Unfortunately, most people in Germany were already placing limits on her, and she was just a baby!

Iowa was different. The sky was as wide and bright as farm fields in summer. Ellen had many fans who encouraged us to set the bar high for our daughter. She had wonderful teachers.

One day I received a request at my job for a tour of the intentional learning community. I spoke to an eloquent, kind, funny woman named Mary on the phone before I started asking questions. She paused. Soon, though, we laughed and realized we were speaking the same language. The tour was for a group of parents of children of all ages with disabilities wanting to ensure that their kids would lead meaningful, sustainable lives as they grew older. The parents’ goal was eventually to build a living/learning/working residential community.

I agreed to set up the tour. I asked a colleague named Mark, who manages the farm at the Quaker day and boarding school, to join me. Mark, one of the finest teachers I have ever met anywhere, immediately said yes.

Mark, in fact, pretty much led the tour. It gave me a chance to watch the parents’ faces grow brighter with hope, to listen to their questions, to watch their reactions as they realized that their dream could be achieved.

At the end of the tour, I brought these amazing parents to our home on the school property that was close to the farm. I introduced them to my daughter who at that time was three years old but starting to speak the two languages that are her first (but not last!).

A few minutes later, I showed the parents the Quaker meeting house and we talked a bit. At the time I did not know my family would be moving to Hawaii, and I wanted to become fast friends with this group of people I had just met. I had trusted them immediately so I allowed myself, knowing they had far more experience with parenting than I, to ask what they thought about Ellen.

I think most parents seek reassurance in some way at one time or another (or more) about what matters in life most: the future of their children. For parents of kids with a “disability,” I have learned that we hold our breath a great deal and hope we don’t come across as needy while we seek to be the best advocates possible for our daughters and sons.

In that Quaker meeting house years ago, one of the fathers looked me in the eye and spoke quickly, decisively, and kindly.

“Look, my friend. Your daughter can do so much. She understands and is speaking two languages. She’s alert. She answers our questions. You’ve got a bright girl. She’s going to be fine.”

But one never knows, and every day you try to give your children skills so they can thrive in small and large ways, so they can transcend expectations, so they can learn the rest of their lives.

But it takes a village, and the wonderful people I met in Iowa began one: http://www.thevillagecommunity.org

Before I started writing this post, I revisited my memories and their website. I was stunned to find my name as one of the individuals who supported them. To my mind, I only did my small part.

Sternstunden der Menschheit – Decisive Moments in History

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Advocacy, Blogging, Faith, Family, German language, Gratitude, Presidential election, Stefan Zweig

I first read Sternstunden der Menschheit (Decisive Moments in History) by the Austrian writer Stefan Zweig as a young man. The collection of miniatures about events that changed the world, such as Robert Scott and his expedition to reach the South Pole, is achingly beautiful and as suspenseful as a novel that must be devoured at once.

I have read the book only in its original German, but I am sure the English translation conveys just as stunningly the fateful decisions made in just one day, or even a few hours or minutes that can change the course of history.

I’ve been thinking about Sternstunden der Menschheit a lot lately for two main reasons. The first is the sad realization, brought home every day, almost every hour, that there is very little heroic about the current occupants of the White House. Just one year ago, I was so optimistic about the United States’ trajectory through history.

The other reason, though, is the courageous efforts of writers, artists, scholars, and even politicians who are rising to the occasion to save democracy in America.

It has happened before in history during times of resistance.

I had the honor of living through the end of the Cold War as a very young man who lived close to the border of east and west Europe as the Iron Curtain first slowly and then with a stunning sense of inevitability fell apart piece by piece.

Those were days filled with true Sternstunden, exhilarating, breathtaking moments that define history and the greatness of humanity!

Call me an optimist, but I believe the world and especially the United States right now have extraordinary potential for many more Sternstunden.

 

Small Steps Forward

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Advocacy, Blogging, Civil Rights, Community, Faith, Family, Fate, French Open, Growing up gay, Margaret Court, Presidential election, Tennis, Trisomy 21

If Serena Williams were playing the French Open this year, she and the woman whom she is looking to tie as winner of the most major championships in tennis, Margaret Court, would be the talk of Paris mostly for their achievements on the court.

Serena is enjoying the tournament, but as a spectator this year as she is many months pregnant.

Margaret decided during the tournament to ramp up her decade-long rant against gays and same-sex marriage. A fellow West Australian, Casey Dellacqua, who is still in contention at the French Open, has for years been on the receiving end of Margaret’s tirades. Margaret claims she likes Casey personally but can’t condone Casey’s decision to have a woman as a life partner nor their parenting their two children.

If the world were in a more normal place, Margaret would probably be mostly ignored. Unfortunately, with the new occupants of the White House, all ground gained in the last decades in Civil Rights is no longer guaranteed.

A friend recently asked why I write about this. After all, he said, I have a nice life and my husband and I and our daughter who was born with an extra chromosome have been largely accepted by the communities where we live, work, and play.

My response is that I still get hit with Big Macs (why not a wrapped Double Cheeseburger?!) and people will yell “Fag” at me when I’m walking down the street minding my own business. Even in settings here in Hawaii very  familiar to me, I hear comments and questions — not always kind, occasionally laced with disdain — about my style, mannerisms, choices, and sometimes about people of all ages who are figuring out their sexuality and identities.

I’ve learned, more often than not the hard way, not to take it personally. To answer my friend’s question more specifically, as long as I have a voice, actually as long as I can breathe, I’m going to live my life and write and speak so that people like Margaret Court might wake up one day with a willingness to imagine what it’s like to walk in my shoes (or tennis sneakers) even if she never can (nor I in hers).

Change happens. For many years I did what was expected when work colleagues, friends, relatives, and close family members would talk endlessly about dates they had gone on, their children, their marriages, their weekend activities. I was expected to take in all this, be friendly and supportive, but never talk about myself. But every once in a while I would pop in with something like, “You know, I went out on a first date with a guy a friend introduced me to. I think it might have been our only date!”

I would be greeted with snickers or ignored. Once in a while, I would be taken aside and told I had been “offensive.”

Times have changed, slowly, but actually more so than I ever would have imagined. My husband and child are recognized as full-fledged members of my vast family. We are accepted in our work and faith communities where the majority of our friends are straight. I actually don’t define myself as gay or straight. I’ve never been a huge fan of labels.

I’m also happy to share some really good news: I found out yesterday that my family will be featured by a well-known organization for its national promotion of diversity and inclusivity. This is an organization founded well over 150 years ago in part to improve the health and well-being of people in countries throughout the world.

It’s funny, but on my walk home yesterday, after finding out this news, I thought, “For this to happen makes all the Big Macs that have landed on me, the thousand times in my life I’ve been called ‘Fag,’ the bruises from being beaten up, it has made all of that worth it.”

I never have thought of myself as Mr. Advocate. But if I can help anyone move to a place of greater acceptance of differences, then I have my answer for “What’s it all about?”

Four Degrees of Separation: Evonne Goolagong

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Advocacy, Blogging, Bullying, Evonne Goolagong, Faith, Fate, French Open, Friendship, Growing up gay, Living in Hawaii, Margaret Court, Peace and non-violence, Presidential election, Teaching, Tennis, Women's and men's professional tennis tours

Evonne Goolagong won the French Open the first time she played the tournament, the only player in the Open era ever to achieve this.

Guess what? I once played alongside Evonne in an exhibition doubles match. Truly. If I were on the Mainland, I would find the framed picture I’ve kept (and will keep forever) and include it in this post. Since I moved to Hawaii more than three years ago, though, I have never been back to the Continental United States. Given the current occupants of the White House, I’m in no rush whatsoever to cross the Pacific.

I’ve been thinking a lot about Evonne, not only because of the French Open. Before I played in that doubles match with Evonne against Pam Shriver and a former anchor with CNN, I had the privilege, perhaps even trumping the honor of meeting a Pope, of having a one-hour interview with Evonne for an article I wrote for a tennis publication.

When I overcame my severe fear of flying and visited Iceland for a week, the afterglow lasted 10 days when I returned to the Mainland. After I interviewed Evonne for one hour, the afterglow of her spirit, graciousness, aura, and je ne sais quoi lasted at least that long. I lightened up, a nearly impossible feat. After our  interview I wanted to do good things for the world.

Many players on the men’s and women’s professional tours, tennis legends like Martina Navratilova, and tennis fans around the world want Show Court 1 renamed the Evonne Goolagong Arena following the latest inflammatory comments about gays and same-sex marriage by Margaret Court for whom the stadium is currently named.

Is Margaret entitled to her opinion? Sans doute! Does her privilege to exercise free speech carry responsibilities? Sure. If you want to be portrayed as a loving compassionate person of faith, then don’t speak like a bigot. Arthur Ashe and Billie Jean King have a stadium and an entire tennis center named after them. Both fought most of their lives for equality.

Evonne Goolagong will be forever associated for her graciousness and lifelong advocacy of inclusiveness. She is currently traveling across Australia to encourage Indigenous young women and men to stay in school and enroll at tennis camps sponsored by her foundation so they gain confidence as athletes and scholars.

Martina Navratilova has pointed out that sporting venues are named for a person’s “whole body of work… who they are as human beings.”

Margaret Court’s cruel ranting for decades against LGBTQI people isn’t free speech. It’s hateful speech that promotes bullying endured every day by women and men of all ages. Read my blog post, Margaret, about my being called a fag last week and getting hit with a Big Mac. I could laugh about it this time around. Decades ago, when it happened the first time, I sought answers no teenager should have to ask: why do people hate me? Only through love, tenacity, luck and finding caring communities do I know now that hatred is not about me — it’s about those who throw Big Macs and shout loathsome words and much, much worse. It’s about people like Margaret Court preaching from a very privileged perch.

Preach all you want, Margaret. If the stadium remains named in your honor, though, I hope it will remain empty.

Friday Picture Post: When Viewing the World from a Pineapple Makes Sense

Tags

Advocacy, Blogging, Childraising, Community, Environment, Faith, Hawaii, Living in Hawaii, Parenting, Presidential election

Given the decision by Trump and his close advisors to ignore what is staring everyone in the face — our climate is changing so fast that Antarctica will soon be green and a major tourist destination — life makes sense to me at times like this when I stop trying too hard to make sense of it.

After a few conversations with close friends and my husband, I go back to what gives me hope: making time to be more active so the world will be a healthy place for my child and all children. I want them to look forward to viewing the world from an oversized pineapple or other vantage points and see trees — palm trees, maple trees, birch trees, any trees will do — clear, blue skies, and water they can drink safely and swim in.

One of my close friends told me after the presidential election that now more than ever people need to become more resilient to decisions imposed upon us by the new occupants of the White House. This resilience can take the form of art, poetry, other forms of writing, community activism, taking on leadership roles in faith groups — in general taking on a more active role rather than passively despair.

And still enjoy and appreciate life! And keep disappointment in perspective but taking delight in what we have: the joy and innocence of children and the possibility of making the future better for them.

5 Degrees of Separation: Maria Shriver

Tags

Advocacy, Alzheimer's, Angels, Blogging, Community, Down syndrome, Early Education, Faith, Fate, Gay parenting, Maria Shriver, Nutrition, Parenting, Philanthropy, Trisomy 21

Dear Readers,

I’m home today with a fever, so if my writing is a little off, please forgive me!

While struggling to get out of bed for a cup of coffee, I saw a news segment about Maria Shriver leading an event this Sunday with prominent journalists hosting panel discussions in major cities about topics that include fitness, food, nutrition, and sleep.

The event, MOVE FOR MINDS, will bring women together to increase awareness of Alzheimer’s as a women’s disease and the need to raise research funds to find cures. Participants will be encouraged to take part in workouts that challenge them physically and spark neural activity in the brain. The event will also promote brain healthy food and lifestyles.

My daughter, like most people born with an extra chromosome, is susceptible to Alzheimer’s. For Ellen and others who have Down syndrome, Alzheimer’s tends to appear 10 to 20 years earlier when compared to the general population.

When I first held Ellen in my arms a few days after she was born, I knew she would lead an incredible life. (But don’t most parents feel that way?!)

When she was a few months old, an early education specialist visited our home. She asked me if there had been an official diagnosis. I said yes but asked why she asked. “I’ve been around a lot of children,” said Sharon. “She is so alert. There is so much going on.”

It may not have exactly been at that point, but soon after my husband and I intensified our research about Down syndrome. We learned a lot about nutrition, lifestyle, early education, physical activity. We joined a wonderful online forum for parents of children born with an extra chromosome. We met parents of teenagers who had graduated from high school.

As all parents of children who are “different” know, it can be at times a lonely path. But we have been blessed by the encouragement and knowledge of many astonishing women and men whom we call Team Ellen.

We are also lucky and grateful for Maria Shriver and others for their courage, humanity, activism and advocacy. They inspire and engage scientists, philanthropists, politicians, industry leaders, and ordinary people like my husband and me who together may accelerate finding a cure for Alzheimer’s, especially as many baby boomers will be staring it in the face or in the faces of their loved ones.

There is a lot of hope. Ellen has been following a nutritional regimen since she was six months old. My husband and I feel like it has made quite a difference. She loves nothing more than to climb walls at the YMCA! She is verbal (at times a bit too verbal) in two languages. With patience, her fine motor skills are improving. Most recently, a link in the online forum Ben and I belong to featured an article about a drug in trials that could reverse the progress of Alzheimer’s.

So what about my 5 Degrees of Separation from Maria Shriver? In my work in philanthropy, I once spoke with Sargent Shriver, Maria’s father, who was first director of the Peace Corps and former president of Special Olympics who was diagnosed with Alzheimer’s in 2003. Thank you, Maria, for looking out for women like my daughter. Because of your advocacy, you inspire me to do my part.

Friday Picture Post

Tags

Advocacy, Angels, Early Education, Emily Dickinson, Faith, Family, Parenting, Teaching, Trisomy 21

My beautiful daughter is now 7. She will show the world the impossible is always possible with good teachers, patience, and faith.

Angels Among Us: Theresa Rosen — An Inspiration To Keep Trying for More

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Advocacy, Blogging, Childraising, Civil Rights, Community, Early Education, Faith, Family, Fate, Gay parenting, Gratitude, Growing up gay, Parenting, Teaching, Trisomy 21, Writing

Today usually would be Friday Picture Post. Tomorrow, celebrating our daughter turning 7 with an official birthday party — yes, we brought cupcakes to her schoolmates earlier this week — we will have plenty of pictures.

I’ll briefly note something I haven’t had plenty of since I began this blog more than 10 months ago: a nasty comment, my first and only! I guess I’ve been very lucky writing about Ellen and her two dads, growing up gay, our daughter being born with an extra chromosome, civil rights, and other topics.

I mentioned the remark to a friend. “Why do you put yourself out there?” he asked. “Why not just play it safe?”

Why breathe?

Maybe at different times in my life I could have played it safe, but I don’t think that was my destiny. Maybe I could have even “passed” for straight. I sure tried, but thank goodness I had enough people rooting for me — some silently, others more demonstrably — that when I was finally ready to accept that this is who I am and this is how I was born, I knew that playing it safe and not standing up for myself and others is fighting fate, never a good thing to do.

Readers of this blog have written or even said to me in person, “Thank you for what you write. The world needs to know what it was like for you growing up, what it is like for your daughter, otherwise people would have no idea.”

My husband is a very private person. While I don’t like to make comparisons, I’m pretty sure he grew up in a more liberal environment. I’m also reasonably sure he wasn’t readily identified as being gay as I was, although, ironically, I’ve been a jock all my life and I’m pretty conservative in many ways!

But I’ve always been drawn to trailblazers like Billie Jean King, Althea Gibson, Lena Horne, Jackie Robinson, Abraham Lincoln, Harvey Milk.

As brutal as it must have been for them at times, they did not play it safe.

When my family crossed the Atlantic Ocean and Theresa Rosen, a fellow passenger on a ship with hundreds whom I met by chance, spoke with me about my daughter for 10 minutes, I knew that fate had brought us together. Rather than play it safe about my daughter, to have her be nicely and sometimes quietly be held back in life by people who think they know more than they do, I would need to be her constant, reliable, knowledgeable advocate and become captain of Team Ellen for a good part of the rest of my life. Thank you, many followers of this blog, for being part of or for joining Team Ellen.

Theresa Rosen always will be part of Team Ellen which is why I have her picture with me every day. I received the picture from her husband who wrote me that Theresa had died a few years after Ben, Ellen, and I met her in the middle of the ocean.

For me, and for the faith and love Theresa unhesitatingly gave our family, she will always walk on water. I can never thank you enough Theresa.