Waiting for a Baby

Dear Firstborn Grandchild,

Everyday, I think of you and the importance of your life to me, your parents and our world.  It is a strong coincidence that we wait for your birth, along  with the 15th anniversary of one of the most shattering times in the modern history of the United States of America. The attack is now commonly referred to as 9/11.  You are going to be born in the city where the attack was most devastating.

Your father works as an emergency room physician at the hospital that saved thousands of lives and treated many of the wounded, NYU Bellevue. Your mother is designing buildings under the shadow of where the terrorists temporarily destroyed the skyline that is a symbol  to the strength and wonder of western civilization.  The horror of what the terrorists did has only revealed the flip side of the greatness of humanity.  Because of this 15th anniversary, we hear amazing stories of how heroes sacrificed their lives during the 9/11 attacks, so that hundreds of others could live. There are many inspirational accounts of how families have rebuilt their lives, despite what the terrorists tried to rob from them.

Your uncle and I flew to New York City a few days after the attack.  Your uncle, Phillip, was born with cerebral palsy, and there was a terrific therapist who helped him in NYC. I felt in my heart that the terrorists were not going to deter us from getting the critical Feldenkrais work that had helped benefit him so much. It was something that I could spiritually do to resist this evil effort against humanity. (It is widely known today that ISIS terrorists have used children with disabilities for suicide bomb attacks.)

As we flew over the city, the pilot circled ground zero. Everyone on the plane burst into singing   “God Bless America, “ and applauded the pilot’s efforts. It was a bright sunny day, and we could clearly see the sad remains of the Twin Towers, that were destroyed, and the thousands who lost there lives there.  New York City was flooded with love and kindness that weekend, despite the grieving.  People opened doors for us like never before, helped your uncle and me cross the street and enter buildings. Of course, we thanked and blessed every NYC firefighter and policeman that we saw.

And now we wait for you.  You were due September 8. But no matter when you arrive, or what you choose to do with your life, your birth is a testament to the greatness of New York City, and an inspiration for the future.  You are a testament to God's goodness, grace and hope for humanity. God bless you, your parents and America. We wait.

Much Love,

Mor-mor and Pop

     

Setting Sail

Our son is back on campus at Kennesaw State University.  Because of his challenges, I work hard to release my fears about him living his life the way he chooses. Then the dean of the KSU Arts College sent this quote to me by G.T. Shedd: "A ship in the harbor is safe, but that's not what ships are built for."

My mother instincts are  too still protect our adult son, because of his disabilities. But that just makes him miserable.  Like any ship, Phillip needs to set sail and navigate life's seas on his own terms, his own way.

 

Meeting Heart to Heart

Phillip, our son, craves establishing deep and meaningful relationships.  But it is extremely difficult for him.  (It is actually difficult for many people, with or without disabilities.)  Once he does make a social connection, he explodes with joy. There is a spiritual quality to the friendship that reaches new heights. We have seen it time and time again. 

A friend sent this reading to me that seemed so meaningful for Phillip’s struggle and others with disabilities. There is much to be learned.

People with intellectual disabilities are not able to assume important roles of power and of efficacy. They are essentially people of the heart. When they meet others they do not have a hidden agenda for power or for success. Their cry, their fundamental cry, is for a relationship, a meeting heart to heart. It is this meeting that awakens them, opens them up to life, and calls them forth to love in great simplicity, freedom and openness. When those ingrained in a culture of winning and of individual success really meet them, and enter into friendship with them, something amazing and wonderful happens. They too are opened up to love and even to God. They are changed at a very deep level. They are transformed and become more fundamentally human.

Source: “More Important Than Winning

Valor

Schools have come a long way at integrating students with disabilities into the mainstream.  But bad behavior dies hard.  Middle School is a ripe environment for some of the most disgusting bullying known to mankind. Students with disabilities are often targets of these brutal taunts.

But middle school can also be the place where young adolescents learn how to do the right thing.  That’s what happened at a middle school in Kenosha, Wisconsin.

Scooter, Miles, Chase and Desiree can all teach us the deeper meaning of respect and friendship.


Buddy Break

Parents who raise children with special needs often feel overwhelmed. But they have few places to turn to take a break and try to refresh themselves. “Buddy Break”  is working to give parents the help they need. Buddy Break works out of churches, and involves every aspect of the congregation and community to integrate and involve the young person with a disability. Quite simply, the children with all types of abilities have fun together.

“When I take the time to relax and reenergize myself, I feel like I’m a better mom,” said Karen Jones a single mother who drives her 11-year-old son David, a quadriplegic,  to a  Church in Winter Park, Florida.  There,  Karen gets a three hour break  from the intense duties of caring for her son.

“I’m able to be more patient, more attentive, more playful, and less stress out, and to appreciate David for the blessing he is.”

Buddy Break is trying to build a permanent respite facility in central Florida to provide overnight care, or extended care when families need it.

To see this community integration program in action, view this link. http://www.nathanielshope.org/events-programs/buddy-break/ 

The Discounted Artist

“What beauty have we missed by shunning people with disabilities?”

I had an astounding conversation the other day with the dean of the Arts College at Kennesaw State University. We were exploring  the link between the arts and people with disabilities.  Quite often, music can soothe the spirit when ordinary words fail.  A person with speech and movement challenges can get on a stage and transform themselves into visions of strength and power.

Judith Scott, an amazing adult artist with downs syndrome, is an example of this. When Judith was born, baby boomers with disabilities were still being warehoused in  institutions. Even 25 years ago, an Illinois neurologist suggested we place our son with cerebral palsy in such a facility.

Joyce and her twin sister Judith Scott 

Joyce and her twin sister Judith Scott 

When Judith was seven, her parents were urged to leave her at a "home" for children with disabilities and the discarded.   But finally after 35 years, Judith’s twin sister rescued her.  Judith began a transformation once she started becoming mainstreamed into her home community. Judith’s talent began to soar. Today, she is considered to be gifted artist, with her sculptures on display at the Brooklyn Museum. Celebrities rave about her art and collect it.

This story just reinforces the importance of integrating people with disabilities into our lives.    If we don’t, we all lose.

To read more, click here: http://www.lifenews.com/2015/01/05/she-was-once-called-retarded-because-she-has-down-syndrome-now-her-art-is-considered-genius/


Holiday Deliveries

Christmas is almost here. In the Atlanta area, All About Developmental Disabilities  (AADD) delivered “Christmas” to 79 families living below the poverty line. All of these families are dealing with some kind of developmental disability, such as Down Syndrome, Autism or Cerebral Palsy.  Although AADD is making a difference to so many, there still is much work to be done. 

Here is the eyewitness account from the executive director of AADD, Kathy Keeley.

Hi All,

This week has been a long week - one with both joy and tension as AADD staff in teams of two and three delivered Christmas gifts to families on our caseload throughout the metro area.   We had 79 families adopted this year through donations of volunteers, companies and small teams.  They bought the gifts, wrapped and delivered the presents to the office where we organized and went out this week to deliver to all 79 families.  

The joy is to see so many families delighted to see a bag of presents.  Most have no Christmas trees or decorations in their homes/apartments so we bring the gifts all wrapped as their decorations.  Volunteers were generous this year and we could fill a car with gifts for 4 or 5 families.   We took the presents – bikes, clothes, toys, books, bedding, and food to the families.  You can see the pictures on Facebook.  We take a  picture for the donor and we have the recipient(s) sign a thank you card since most cannot write themselves.  Families range from a 65-year-old woman living alone to families with 8 to 10 children.

The tension comes from the stories we return to the office to share.  We see the worst poverty, homes with no furniture, couches with no cushions, rats in the kitchen, mattresses on the floor with no bedding, and children in situations that concern us.   We come back to the office very concerned all wanting to help or understand how people can live this way.   We know we are lucky and gain appreciation for our own lives and families.  It balances our holiday spirit to know we live differently.

Today was my delivery day and I saw 5 families in the Bankhead community – one in 5 houses is abandoned or squatters have moved in.  I saw one family with 5 children – no heat and the oven open to heat the house.  They have mattresses on the floor, garbage everywhere, and we had just missed a shooting between two gangs.  Our client’s brother was shot in front of the children for whom we were delivering presents.   I saw another family with a 22-year-old sitting on the couch in a dark house – she had aged out of high school and has no work.  She has nothing to do all day.  I saw another family that had just moved into their house – they had fresh paint and new floors but lacked furniture.  Two daughters and a son – all young adults – are on our caseload.  Another family is in an extended-stay motel.  She is a long term client of AADD with 10 children.  Her 14-year-old was going into labor – very premature and they were off to Grady.  We are concerned for this family – several had significant intellectual disabilities.  

Each day this week staff have returned with stories like mine.  Each day we share and listen and try to sort out what we can do and not do.

The stories could go on…. We make a difference in people’s lives every single day.  Also, we sometimes have to step back and let people suffer the consequences for some of the choices they make.  We struggle each day with these choices given the challenge of poverty and an intellectual disability. 

A crew is still here wrapping presents for another 5 families we discovered were missed.  I am grateful to the staff for working as a team to get this all done.   I can hear people now encouraging others to keep their holiday cheer as we head off for the weekend.

Happy Holidays!  Thank you for all of your support.

Kathy Keeley

Executive Director

AADD, All About Developmental Disabilities

125 Clairemont Avenue, Suite 300
Decatur, GA 30030
office. 404.881.9777 ext. 215

direct. 404.809-2925
fax. 404.881-0094
email. Kathy@aadd.org

www.aadd.org


Changing Russia

Russia has a terrible record in how it treats children with disabilities. Thirty per cent of these children are abandoned. But one supermodel is working to change that.

Natalia Vodianova was inspired by her special needs sister to change Russian attitudes.

Natalia Vodianova was inspired by her special needs sister to change Russian attitudes.

Cover Girl Natalia Vodianova has a sister with special needs. After she became a supermodel, Natalia founded the Naked Heart Foundation, now celebrating its 10th anniversary. Naked Heart works to create more services and  cultural acceptance for children with disabilities to live happy lives. It is a little like pushing an elephant up hill, because of the deep disregard for people and children with disabilities within the Soviet Union.

Natalia has a daunting mission. She is trying to retrain Russian culture. Naked Heart is teaching  Russians  that people with disabilities can contribute meaningfully to their families and communities.

Natalia credits her special needs sister, Oskana, with contributing to a “ray of life,”  for their family during  hard times of growing up hungry and cold in Russia.

You can find out more at www.nakedheart.org

Poised for Stardom

Jordan Spieth wins the Australian Open

Jordan Spieth wins the Australian Open

I always get excited when I make a prediction and it partially comes true. I had predicted that Jordan Spieth would become golf’s new superstar because of his talent. But Jordan also has a sister with a disability who really helps him stay focused and grounded. Read my earlier post here.

Yesterday, Jordan got closer to fulfilling his dreams. He won the Australian Open with a six shot lead. At age 21, he is the first American to win this  championship in 21 years. 

Jordan  will now be a favorite at the U.S. Master’s. I am looking forward to watching him.

Advertising Everyone's Included

When I first saw this Prudential Ad, I suspected the copywriters may have stolen the title of my blog.

Although there are no people with visible disabilities in the ad,  I agree with the spirit. When everyone’s included, anything is possible.

Three Fabulous Fathers

Rarely do men get the credit for the hard work  they do raising children with special needs. It is usually the mothers who get showered with glory for being exceptional.  But lately three amazing fathers deserve note.

Dan Habib and his son Samuel

Dan Habib and his son Samuel

First, Dan Habib is a visionary who has worked tirelessly to  help his son Samuel integrate fully  into his school and society. Dan’s efforts are changing the way people perceive children with special needs in the educational arena. 

Currently, 56 per cent of all children with special needs still remain in segregated classes.  These isolated classrooms often turn into babysitting or day care services, where very little learning takes place.  Statistics show that both the student with special needs and the general students do better when they are mixed. Dan recalls the story when the students in his son’s class had to teach a refugee from a war-torn country how to navigate in western society

“They were patient, they were compassionate, they were creative, they were loving. That’s what they learned from Samuel, and that’s what I’ve learned from Samuel.”

Dan Habib’s  Ted Talk is terrific. WATCH IT HERE. 

Second,  Diogo Mainardi’s book “The Fall,” is a tremendous love story of a father’s devotion to his son, Tito. He was born with cerebral palsy.   With lavish eloquence, Diogo describes his journey to raise Tito.  Diogo admits his feelings of anger, confusion and inadequacy at raising a child with a disability. Then,  this father learned to be his son’s feet and legs, when Tito was too young to use a walker  or wheel chair.

Tito and his father, Diogo Mainardi

Tito and his father, Diogo Mainardi

Diogo also injects "The Fall" with his deep knowledge or art, architecture and history.  “The Fall” provides one of the most powerful descriptions of how the Nazis used babies with disabilities to launch the holocaust. 

“The Fall” has 424 short passages or chapters that match the number of steps Tito can take walking through the cobbled streets of Venice, before he falls.  Like Dan Habib, Diogo infers that he his a much better father and person, because of this opportunity to raise Tito.

Finally, and most importantly, my husband Bahns is an amazing father who has prevented many falls, when Phillip has tottered.  Bahns has done the heavy lifting, both physically and figuratively to help raise our son. When  Phillip first developed Type I Diabetes and I was unsure about my ability to help, Bahns gave him his first insulin shot.
“If I can do this, you can too.”  So I leaned on his strength and learned to help our son manage his diabetes. And Phillip manages his diabetes well,  as a healthy young man of 25.

Bahns  has always viewed difficulties when dealing with a disability as opportunities for better problem solving.  But Phillip too has taught his father to be a more patient, compassionate, creative and loving.

Bahns helps his son with his jacket. 

Bahns helps his son with his jacket. 

A Celebration

Our son is a quarter of a century old.  There were times in his life when we were not sure we would get to this point of celebration.  We are well aware that 50 years go people with cerebral palsy had shorter life spans.  Then, we almost lost Phillip when he developed Type I Diabetes at age 15.  The cerebral palsy masked the symptoms of diabetes. But today, Phillip is full of joy, spunk and good health. 

Despite the huge cake that appeared as a part of his birthday celebration, rarely does he eat such desserts. It’s not that he restricts it from his diet, it’s just that he eats so well for a young man, that his body just does not crave extreme sweets, except for the occasional celebration.  Our 30-year-old daughter too shies away from cake and sugary choices.

When Phillip was first diagnosed with cerebral palsy, I made a conscious effort to choose better food.  I tried to buy organic and local whenever possible.  We learned to eat beans, rice and all sorts of vegetables. We were shocked when Phillip developed Type I Diabetes, because he was thin and ate healthy choices.  But then we quickly learned Type I has nothing to do with weight nor sweets, but genetic preconditions and a virus.  Nor did it have anything to do with his cerebral palsy.

The endocrinologist in the emergency room told us, “Phillip is just another kid who happened to come down with Type I Diabetes.”

After getting through the initial shock of dealing with Type I, we promised Phillip we would do whatever we could together to help him grow and live a healthy life full of joy and promise.   He has triumphed. That is worth celebrating. 

A Strong Influence

We never know what impact our kids will have on the lives of others.  Our son Phillip, was mainstreamed throughout his education.  It was not easy.

Life became increasingly difficult when he developed juvenile diabetes at age 15. The disease had nothing to do with his cerebral palsy. As one doctor said to me, “He’s just another kid who came down with Type I Diabetes." 

When Phillip was in high school, he made some incredible friends.  The president of the National Honor Society wanted to do something to support Phillip, so they participated in a “Walk for the Cure” for the Juvenile Diabetes Research Fund (JDRF).

Last week, the extraordinary young man who was president of our son’s high school honor society, helped raise  over $76,000 for JDRF, at the firm where he works in Hartford, Conn.

Phillip was deeply touched that his friend still carried the torch to help find a cure.

“That is so fantastic,” Phillip said. “I am truly happy.”

  

Walking Breakthrough

Walking is something most of us take for granted.   But for many,  that ability seemed impossible, until now.

Scientists have developed an exoskeleton that helps a person move their legs, similar to the human gait. The U.S. Food and Drug Administration has recently approved this kind of technology for home use.  The innovative product is a combination of computer technology, sensors and innovative crutches that work together to help a person stand and then walk.

This gives hope and possibilities for our wounded soldiers returning from the battlefield without legs, and anyone who has suffered the loss of their ability to walk. 

To learn more about ReWalk, click here

Spare the Pity: 7 Tips to Support Parents

A wonderful young mother recently asked me for some advice. Her best friend in another state has a toddler diagnosed with Down Syndrome. But no one seems to be talking about it, nor acknowledging it.  “What should I do, and how can I help?”

Seven Tips for Friends and Family Members

 I was touched by her question because I knew she really cared and wanted to do the right thing. But she felt fearful and awkward about doing something hurtful.

That  is a common problem for many family and friends of parents who have a child with “special needs.”   It doesn’t matter if the diagnosis is down syndrome, cerebral palsy, autism or Fragile X,  these parents love their babies as any parent loves their child.  The children are children, not the diagnosis.

I like what Ellen Seidman writes in “Love that Max.” 

Our children are not tragedies. They are our children, as loved, adored and hugged as much as any other child. They make us laugh. They bring us joy. They fulfill us. So please spare us the pity about our kids — but feel free to nod sympathetically if we gripe about all the medical appointments, therapies and extra paperwork we juggle, not to mention the costs. Or just bring us chocolate.”

Or coffee…or wine…..

 Raising a child with extra challenges is tough.  But guess what? Tough is an equal opportunity employer for every parent. Here’s what I recommend to develop a more supportive environment for new parents of a baby with a “diagnosis.”

  1. Offer to pick up and cuddle the baby. Children with a diagnosis don’t break. It makes the parents feel great to see you hug and snuggle their child. You’ll be surprised at how wonderful you feel holding their baby.
  2. Begin a frank discussion with the parent. Say something like, “I want you to know I think your baby is beautiful and I can’t wait to meet her.”   Follow up with,” I’ll support you however I can. I am always here to talk, no matter what.”
  3.  It’s okay to ask the parents what their toughest challenges are day to day, and there are many. Then you can share what your toughest challenges are raising a child. You’ll be surprised at how similar the parenting of children with and without disabilities are. You’ll also gain new respect and marvel at  the great expertise that parents have in problem solving for their children with extraordinary challenges.
  4. Ask them  about their child. What does he or she like? Ask the parents to describe the joy that their child brings to their family.  You’ll gain more insight into joy in your own family.   
  5.   If you have children, offer future or current play dates. “I can’t wait for our children to play together.” Parents of children who are “special” often see their children being left out, and that translates into isolation for everyone.
  6.  Avoid clichés.  I hated the phrase that God only picks “special parents” for his “special children.”  It felt hollow and did nothing to help me with the day to day routine of parenting and often caregiving.
  7.   Talk about anything you would to any parent. Where does your child go to school? Where have you found baby sitters? What restaurants are the most child friendly? Where can you get swimming lessons?   Parents of special needs children do feel lonelier at times because others are simply afraid to ask them questions.  

Talking is the first step towards inclusion.

A New Revolution

This fall,  there is  a style of   inclusion that many naysayers predicted could never exist within mainstream universities.

For the first time in history, thousands of students with intellectual disabilities are studying, socializing and living on college campuses. More than 200 colleges across 37 states are offering programs to include students who were previously excluded from one of the “rights of passage” for most young people.

Phillip attends an open house with his classmates at the Academy

Phillip attends an open house with his classmates at the Academy

Our son Phillip is unusual.  He was able to get into college the regular route, but once there found it overwhelming.  He needed more support, academically and socially.

So he decided to transfer to Kennesaw State University. There he has found the  support that he craved .  Phillip takes half his college credits in the regular classes, and the other half at the KSU Academy for Social Learning.   The Academy helps refine his social and career skills, practical tasks that are preparing him for a life beyond the campus. Most important for him, he’s making new friends.

KSU must be applauded for investing in such an innovative and groundbreaking  project. Dr. Papp, KSU President, and the university are highly featured in the film “Rethinking College.” Read more about the film here. 

Phillip is thrilled that he has transferred to KSU and is participating in the Academy. Our new KSU owl has declared, ”It’s the best decision of my life.”

Phillip has a conference with the staff at KSU's Academy

Phillip has a conference with the staff at KSU's Academy



Dancing with New Legs

Our daughter is engaged to a very fine young man.  This means that finally my husband and I are going to take dance lessons, to prepare for the wedding.  This is a radical departure for both of us. Neither of us grew up dancing.  I am the daughter of a fundamentalist minister, and  dancing was forbidden. My husband was the victim of the rock concert generation, where you just bobbed your head, instead of doing anything that required choreography. (There may be some hearing damage, too).

My daughter always has teased me about my lack of rhythm. I have white woman’s disease. (Think  Julie Louis-Dreyfus in that Seinfeld skit where everyone groans and covers their eyes  when she dances. ) But our daughter grew up taking ballet and dance lessons.  It is a joy to watch her dance on stage or at a wedding.  (Now walking down the sidewalk, she trips all over herself). Anyway,  I am terrified about flopping on the floor, in front of our favorite family and friends on one of the happiest days of our lives.

But Amy Purdy gives me courage. She is the woman who lost both of her legs, yet managed to score a bronze medal at Sochi last winter and preformed on “Dancing With the Stars.” In 1999, Amy was stricken with bacterial meningitis.  She almost died and fell into a coma. Amazingly she recovered, but the infection had cut off circulation to her legs. Doctors amputated both legs below her knees.

She learned how to walk again on prosthetic legs. In 2012 when snowboarding was declared an Olympic sport, Amy started training. Then she went to Sochi and got a bronze medal and decided to appear on the strenuous Dancing with the Stars. These are amazing feats for any able bodied person.

Amy and her boyfriend give back too. They run Adaptive Actions Sports a charity that helps wounded soldiers and children with disabilities snowboard and skateboard.

“We show people that there’s not just life on the other side, but a full life—maybe fuller than you ever would have had if this had never happened to you,” Amy said.

I adore that spirit.  Our son, who has cerebral palsy, has taught us much about this resilient approach to life. He too wants to take  lessons, so that he can dance with his sister at her wedding.