Real Jobs in Georgia

Jobs are  critical   to help improve the lives of people with disabilities. These are real jobs, with real purpose and real pay.  Workers with developmental disabilities have the toughest time finding  and keeping jobs.

That’s why I went to the State Capitol yesterday, to help our state do better. Our lobbyist for All About Developmental Disabilities (AADD), Elizabeth Appley, introduced me to some key players who can boost supportive employment in the state of Georgia.

The pilot project would   help graduating seniors get and keep  jobs.  The good news is that the state is doing well, helping  students with disabilities graduate.  But too often they are graduating to the home couch or basement, to watch television and play video games.  Georgia ranks 49th in the nation in the money it spends to support people with disabilities.

This supportive employment program would actually be an economic plus. Most states in the nation have a similar program. The economic return on investment to the state from investing in supported employment programs exceeds $3000 per employee, and over $1.60 for every $1 spent.

We are asking  for an investment.   The $1.9 million program would help 250 high school graduates find and keep jobs. The money goes to match jobs to people with disabilities, get them placed, and then provide them with the support to keep them successful on the job for the long term. The state lawmakers we met with yesterday got it.  My state senator, Sen. Hunter Hill, was slammed in committee meetings yesterday, but graciously squeezed us in between meetings  to see us. We had held a “kitchen table meeting” with Sen. Hunter Hill earlier this fall to discuss supportive employment and other issues. I think it was this earlier contact that made him willing to not only see us again, but lend  his support.

Then we met with Sen. Butch Miller, chairman of the majority party. He also agreed to help.   As the parent of a son with a disability who is attending the Academy for Social Inclusion at Kennesaw State University, Sen. Miller deeply understands the need for better opportunities in the workplace.

Across the nation, there are tremendous stories of success.  In the Atlanta area, AADD already has successfully placed adult workers at Kroger, P.F. Changs, Popeye’s, and Publix.  But we need this pilot program to help the graduating seniors find a lifetime of employment, rather than dependency on state support.

Snow Lessons

I have been deeply concerned about how people with disabilities fared while trapped in the crazy snow gridlock that gripped Atlanta last week. One story makes me feel good about humanity.

Clients of the united Cerebral Palsy of Georgia day program spent 20 hours in a van, trying to travel just 30 miles north from Atlanta, to Marietta. Somehow, their wellness coordinator and driver, Vontana Atkins, kept the five men warm and hydrated with small bottles of water and candy from her purse. Read the story by Valerie Bauerlein in the WSJ, Jan. 30, 2014 here.

While Ms. Atkins heroism is uplifting, the overall calamity is horrifying. First, I refuse to call the two inches of snow that fell on Atlanta roads, a storm. There were no high winds, nor whiteout conditions. There just was a failure between city and state officials to prepare for anything other than a light dusting of SNOW.

First, Gov. Deal ignorantly called the snow “unexpected.”  At 3:38 a.m. Tuesday, Jan. 28, 2014, the National Weather Service put the entire Atlanta metro area under a winter storm warning.  This area is the poster child for suburbanization. Everything and everyone is dependent on the car.

The Atlanta Metropolitan area is sprawled over 28 counties that are about the size of Massachusetts. Every workday, one million cars drive around this area.  The Mayor of Atlanta doesn’t control the whole area.  There is a patchwork of counties and towns that can be counted on to fail to work together. This led to snow paralyzation.  It stranded asix million people, leaving 2,000 children separated from their parents, emergency vehicles trapped in  gridlock, and one baby born on I-285. It is a miracle there were no fatalities in the frigid temperature.

While I watched this traffic horror on television, I was grateful that our son who has cerebral palsy and type I diabetes, was safe in his University of West Georgia dorm. Unlike our transportation officials, I knew the snow was coming and would create driving problems. At 8 p.m. Monday night before, I texted our son’s caregiver, to pack a change of clothes because he was probably going to be spending Tuesday night on an aero bed in the dorm room. Our son’s terrific aide, Chris Brown, also knew the snow was coming and said he had already packed his car.

The mother of one of the five men trapped in the United Cerebral Palsy van said she contemplated going out to find her son, but knew it was fruitless.  She said the city and state need to focus more on human safety.

The Georgia General Assembly is now in session. Let’s see if they learn.

A Performance in Full

Saturday night, my husband, son and I felt our hearts and spirits soar as we watched  Full Radius Dance at the Seven Stages Theatre in Atlanta. The”New/Favorites” program was simply breathtaking, as we witnessed dancers with and without disabilities exhibit such ethereal elegance, grace and strength.

We gasped with shock as we observed some of the dancers hoist their counterparts in wheelchairs to the sky. Then we held our sides laughing, when the troupe suddenly  burst  from New Age music into the bubblegum hit, “Yummy, yummy, I have love in my tummy.”   I thought our son Phillip, who lives with cerebral palsy,  was going to stand up and run onto the stage with the dancers,  as he became so engaged with the performance.

This theater experience was one of the best we’ve had.  We felt much more elated, energized and moved than any performance we have seen lately.  (We went to a Broadway play at Thanksgiving, and Full Radius Dance ranks much higher for  us than that high priced ticket.)

Douglas Scott, executive and artistic director, I thank you for what you do.  Your work and your dancers are a tribute to unlimited possibilities and a tribute to the human spirit. Atlanta is lucky to have you.  Read more about Full Radius Dance here.

Triumph Over Trauma

Full Radius Dance is one of the most inspirational troupes I have ever encountered.  Their spirit and energy uplift everyone in the audience. This Friday and Saturday, under the leadership of executive director Douglas Scott, the Full Radius  is performing “New Favorites” at   7 Stages Theater, 1105 Euclid Ave.  Their guest artist is Alice Sheppard.  She has agreed to give us some insight into her role as a guest performer at one of the most innovative dance companies in the nation.

REFLECTIONS  by Alice Sheppard

For the past week, I’ve been drinking my morning coffee quickly and jumping in a car hoping that the rush hour journey from Decatur to the Cobb County studio will give me a chance to steady my nerves.  I’m new to town.  I’ve been invited to join Full Radius Dance Company for their January concert, and rehearsals are well underway.  As the road stretches in front of us, I go over the choreography in my head: turn, scoop arm, flip hand, look, flex the wrist, S around, and …  and ….  I’ve danced for AXIS Dance Company, Infinity Dance Theater, GDance, Maria Bauman, and Marjani Forté.  This is my first experience with Full Radius: I want to get it right.

Being a guest artist in an established company is an odd experience.  Every company has a different culture.  The basics are the same, but the niceties are different.  Is it all right to eat in the studio or should we only drink water?  All the company members have years of experience with each other:  Their trust level is high, and they are well-versed in that private dancers’ code that people who dance often with each share.  They know what each tiny gesture or vibration in the body means and how to respond.  Sometimes, words aren’t necessary.

As a guest artist, part of my job is about making it possible to dance without the history.  This is especially tricky, as I’ve been invited to learn the role of a former company dancer.  His part was created for him, and it plays to his many strengths.  His body is entirely different from mine; he’s much taller and undoubtedly much stronger.  I worry that the cast will constantly be aware of how he did it.  Dancer body memory recalls more than the movement; it also remembers how another person feels, where their body touches, where they are in space, and the qualities they bring.  I hope we won’t have to make too many changes to the original choreography.  It is Four Years Ago and it is Yesterday is a beautiful, haunting piece.

Luckily, Douglas and the dancers are friendly, open, and supportive.  The rehearsals go easily.  We warm up together; I study the dancers seeking to match my movement style with theirs.  Once we start dancing, I begin to find a flow.  Slowly, we work out how to do the choreography.  No significant changes, just the usual differences of two dancers.  I breathe out.  This might actually be possible!  By night, I watch the video and make small versions of the movement.  At our next rehearsal, my heart soars; we more than make it through a run.  I begin to get a sense of how lovely the quartet in the middle is.  Some of the music sticks in my head, and I sing to myself as we take our break.  With each run through, I feel more secure in the movement and better able to dig deep into the emotional aspects of the piece.

I am excited to be here and honored to be on this journey with Full Radius.  I hope you will be able to come and see the show.

Tickets can be purchased online at www.fullradiusdance.org.

Georgia Can Do Better

Georgia’s economy is improving, with growth in population, employment, personal income and tax revenues.  Georgia is on track to outpace the national average in 2013 and has had many successes attracting business to the state.

Then why is Georgia at the bottom in supporting people with disabilities?  Here are the dismal facts for Georgia.

–  Ranks 49th in the total fiscal support for people with developmental disabilities.

– Only 7% of the 98,000 caregiving families in Georgia receive financial assistance.

– Employment rates for those with developmental disabilities are lower than before the recession.

These statistics paint a grim picture for people with disabilities living in Georgia.   When a state supports its people with disabilities, its economy improves.  The new chief of Vocational Rehabilitation is working to educate state lawmakers that it is in everyone’s best interest to hire people with disabilities.

VR Executive Director Greg Schmieg said that a 1999 state study in Florida revealed that for every dollar spent on employing a person with a disability, $16 dollars went back into the state coffers.  Yet, Georgia turns its back on millions of federal dollars to support employment, because legislators fail to authorize enough to qualify.

Here are just a few critical decisions Georgia legislators need to make in 2014:

• Increase funding for Vocational Rehab services that prepare people with disabilities for competitive employment, so that Georgia may pull down its full 4:1 federal support ratio.
• Support employment services for 250 special education students exiting from high school.  Without supports, they go home and “graduate to the basement or couch.” The majority could be successful working at real jobs, becoming taxpayers and moving away from lives of dependence and poverty.
• Support an increase in funding of the $1.9 million budget for the Department of Behavioral Health and Developmental Disabilities, including an increase in funding of $200,000 for post-secondary programs for students with intellectual disabilities. Most states have these kinds of programs and Georgia has been lagging behind the nation.

These changes will help improve Georgia’s low ranking among states in support for people with disabilities.  It’s not only the right and humane thing to do, but it is economically smart to support people with disabilities in the workplace and in their communities.  Help them become more independent and many benefits will follow.

There is an old story that goes: Give a man a fish and he will eat for a day; Teach a man to fish and he will never go hungry.  Teaching, training and supportive programs will be a big boost to not only the individual, but everyone.   If Georgia can begin to do better with these simple steps, perhaps this can be the start of a better job of integration for all people with disabilities.

The Ultimate Gift

Christmas always makes me think about gifts. What am I going to give everyone? Often, it is challenging to find the perfect present for the person with disabilities. But then I realize that during the holidays and all year, the real gift is about creating and sharing memories, and being  part of a family.  This is the ultimate gift.

Families who have opened their hearts and doors to children with disabilities know a great deal about this joy.  Angela Redd was working at the Blythedale Children’s Hospital in Valhalla, N.Y. when she fell in love with a sweet baby, with multiple challenges. He was not expected to live to his second birthday and looked different with his webbed legs, fingers and tubes running into his body. Despite Saliman’s physical deformities, caused by a rare genetic condition, Angela knew she wanted to raise him.  Saliman’s biological parents were unable to care for him. (People Magazine, Dec. 16)

So Angela took him home, cleaned his feeding and breathing tubes. She and her husband Rashid stood by him, despite dozens of operations, including the amputation of his two legs. At age 13, Saliman is a rambunctious teenager whose  spirit is infectious.

 “Saliman has taught us so much. When he puts on those prosthetics and goes to school, it makes me feel like I can do anything,” Angela Redd says.

This story reminds me of Jessica Long, who I wrote about in the post “The Unstoppables.” Jessica was born without legs, but her parents adopted her and her special needs brother from an orphanage in Siberia.  Today she is a record holding Para-Olympic athlete, poised to grab more swimming medals.

Of course, not all parents who give their homes and open their families to kids with special needs are going to raise Olympic athletes. Families who adopt children with disabilities usually have reasons that differ from parents who adopt nondisabled children. Many of the mothers and fathers who adopt children with disabilities perceive themselves to be emotionally successful adults who have a unique set of skills required to parent a child with a disability. They often have prior experience working as health care providers, like Angela, or have worked in the school system.  They have a level of awareness about how to advocate for a child with a form of disability. www.Disabledworld, “Adoption of Children with Disabilities, by Thomas C. Weiss.  Jan.13, 2011.

Parents who have adopted children with a form of developmental disability speak of the incredible amount of joy that the children have brought into their lives.  This is different from what recent studies reveal about parenting overall.  Most parents acknowledge that having children does not bring happiness, but does bring more meaning to their lives.  But now parents of children with disabilities talk about the level of enrichment brought into their families, in ways they never imagined.  These parents find huge satisfaction in helping their child gain little victories in life and reach for accomplishments. Together, they know the real cause for celebrations.

But the statistics are anything but celebratory:

• In the U.S., it’s estimated that 60,000 children with disabilities are waiting for adoption and real homes
• In the United Kingdom, forty percent of all children waiting to be adopted have a disability
• Worldwide, seven million children are living in institutions, many of them with disabilities

When I was filming the documentary, “Not Home,” we met a mother who adopted a young boy with cerebral palsy.  For the first six years of his life, Qualeigh had lived his entire life in an institution. He never went outdoors; never felt the gentle caress of a fresh breeze on his face.  Today, he is living in a real home, learning how to use a walker and going to school.  His mother is ecstatic that she’s played a role in giving him a family, and better quality of life.  www.nothomedocumentary.com.

At first, parenting a child with special needs can be overwhelming and stressful. But then the struggles lead to triumphs, and the parents explode with joy, much like Angela and her husband, Rashid Redd.   The couple delight in their son’s unbreakable spirit.

“My parents, “ Saliman says,” have taught me to go forward, never stop and never give up.”

The Holidays

Ok, here they come. Whether or not we are ready the holidays descend upon us like  some kind of invasion from outer space. They are full of expectations and the pressure  to do more…more baking, entertaining, gift buying and decorating. One of the toughest times for parents with special needs children is to try get it all done, feel joy and celebrate the season in a world that is not designed for their kids.

So much of our holiday celebration revolves around the Santa tradition. A child with physical challenges and sensory integration issues may hate going to the noisy mall or other venue to wait for hours to sit on Santa’s knee. Even if the mall or Christmas festival is handicap accessible, the crowds usually make getting around in a wheelchair impossible.

The supposedly happy act of visiting Father Christmas can easily result in mind blowing tantrums, instead of a serene Norman Rockwell Santa scene.  Both of my children, one with disabilities and one without, never actually liked to sit on Santa’s knee.  Our adult daughter finally confided her dislike of getting dressed up for those Santa on the knee photographs. Phillip just resisted being held by Chris Kringle and never looked truly happy.

I think that some of our favorite “Mums” from across the Pond have the right idea.  British mothers have gotten together to hold their own festival for children with and without disabilities.   Both children and parents are finding new joy in celebrating the season by making a festival that’s truly inclusive.

Here’s what they’ve done.

• First, their children can make an appointment to sit on Santa’s knee, instead of waiting in line.
• Everything is sensory conscious, no loud noises nor obnoxious lights
• There are fun activities for siblings of kids with disabilities
• There’s animal therapy, art workshops and theatre entertainment in a well planned accessible setting

These are great ideas that could be easily duplicated in the States.   There are      many other ways to think outside the box and help your family sail through the holidays.  We have some friends who just invite a reputable Santa to visit their living room, a few days before Christmas.  It’s joyful, but more serene and quiet for everyone.

Click here to find more tips to help with the stress. 

Thankful

Holidays with kids with special needs can be wonderful or really tough.  We have had our share of great holidays, and some not so great ones.  This year was one of the better ones.

We decided to do something non-traditional and celebrate with our Chicago friends in New York City for Thanksgiving. That’s where our daughter and our friend’s daughters live.  We invited 35 for dinner at a terrific restaurant at the Bowery Hotel. But it wasn’t what we ate, nor where we ate our turkey,  (or even that I didn’t have to cook), but the incredible joy of all being together. 

There was great magic in our celebration.  Both Phillip and Greta declared it one of their  best Thanksgivings ever.   Phillip said he had never felt so included. So, a big thank you to Will, Torie, Gavin, Cooper, Charlotte, and Harry.  And thanks to their dad for flying them to New York City, complete with their two labrador dogs. It was a blast.

Champion Parents

“The miracle isn’t that I finished, the miracle is that I had the courage.”

One father wheeled his daughter underneath that banner.  It was a deep shock when he was  first told that his  child was different, and would live outside of the “normal” range,  however that is defined. The diagnosis doesn’t really matter. It can be autism, cerebral palsy, down syndrome, Fragile X,  or a spinal chord injury.  The emotions are the same.

How parents process those emotions are different.   But I think that every parent who receives the news that they will be raising a child in a different world should see this story.  It’s a little longer than most of my links, but well worth the time.

Parents of children with special needs tend to be tireless warriors. Perhaps more than any other group they explore, experiment and invent opportunities to help their children in schools, churches,  and the workplace.  Parents do this to bust their kids out of the limiting conventions of traditional mindsets. Their communities are better places because of their creative efforts.

Changing Attitudes

It is uplifting to see  many young people today  sharing their lives with  students with disabilities. In fact, they seem to be doing a better job than their adult counterparts. When I went to high school, the kids with disabilities had their own “special” classrooms.  That resulted in very little interaction and integration.  Things are  changing.

A friend from Minnesota sent me this video of how a student with cerebral palsy touched the very core of his classmates hearts.

Then there’s the story of the cheerleader in Texas who was asked to sit on the sidelines by school administrators, because they were concerned about Brittany Davila’s “safety.”  Brittany  was born with Down Syndrome, but has been cheering on the squad since middle school.

“It’s her favorite thing to do,” Brittany’s mother said.

Her classmates too were upset and knew how much Brittany contributed to their school spirit.  It became a national story.  Last month, the school administrators wiped the egg off their faces and reinstated Brittany on the squad, adapting some of the routines so she would not do anything dangerous.

The cheerleaders are thrilled to have her back on the field.

“She helps us stay on task. If we are talking, she’s like, ‘Get in line.’” Deer Park Cheerleader Sara Washington  said.   “She’s perfect for this. This is what she was made to do.”

What’s Important

There’s a new rock star in the world of golf.  Jordan Spieth is barely 20 and already earning millions of dollars. Jordan’s swing energy and talent are rocking the world of professional golf. He was picked to play on the prestigious President’s Cup. He sank a hole in one during the practice round and was great fun to watch.  Some worry that the fame and fortune may go to his head, like so many others, but this kid is different.  He’s grounded.

Jordan clearly and frequently thanks the gift of his sister, Ellie,  for teaching him what is important in life.  Ellie was born with a disability and attends a school for children with developmental challenges. Jordan knows the strain of the emotional and financial pressures of raising a child with a disability. In the case of the Spieth family, they chose to work together as a team, and became stronger for it.  Jordan’s brother is going to play basketball at Brown University, and Ellie enjoys being on a  soccer field.

Everywhere, commentators describe how grown up, how mature beyond his years Jordan behaves.  Our daughter Greta also has been described this way, too. We believe it was the gift of living with a brother who was born into a world that was not designed for him.  Everyday, our family worked as a team to figure out what was most important.  Often it was her brother Phillip’s needs that had to be met, but we also worked hard   to strive to have fun as a family together.

Many times Greta’s needs were put on the back burner.  But then we strove to make sure she knew that she was the focus of our efforts, too. Greta developed this innate wisdom to know that, as a family we were struggling to find the balance to satisfy everyone’s most important needs.  I think this helped her find professional success. After graduating in architecture from UVA and Yale, where she earned top honors, she now has a plum job helping design the New York headquarters of a famous company.  But she too is very grounded.

It is often true that siblings may resent or be jealous of the time that their brother or sister demands. They may feel embarrassed. But when parents tune into important needs or every member of the family, they can help ease the difficulties. A University of Michigan report found that children of siblings with disabilities usually develop remarkable skills that lead to success.  They are:

• Patience and kindness
• Acceptance of differences
• Compassion and helpfulness
• Empathy
• Dependability
• Loyalty that comes from standing up for a brother or sister

These are qualities that have helped Jordan shine as a young superstar. . Spieth describes how he enjoys being with his sister and sharing her sense of humor. Time spent with her keeps him centered.

“When I’m upset at a tournament or don’t finish it the way I should, it really does put things in perspective,” he said during the Fed Ex Cup playoffs. “Being Ellie’s brother, humbles me everyday,” Jordan said.

I predict his light will shine bright for a long time, because he knows what’s important in life.

Real Friends

“Friendship…the choices we make, reveal the true nature of our character.” Guinness commercial

Beer commercials usually bug me. They mostly promote a parade of the well-dressed or nearly dressed young adults, who have no purpose other than endless partying.   This ad struck a different chord

The tweets and social media comments  have been mixed. We don’t know how the young man acquired his disability. (I presume he is a real person with a real disability.) But it doesn’t matter. Some tweets darkly suggested he was hit by a drunk driver.  That’s missing the point. It’s that his friends worked hard to do something they were uncomfortable with to learn how to live in their friend’s shoes, or wheelchair in this case. The victory is in learning how to do something different  and developing greater insight. How many of us would go to that  effort for a friend?

I suspect the ad was influenced by the rough and tumble film “Murderball.” But  beyond the brash physical effort of the game, the underlying message is that friendship is not always easy.  There is often a struggle and suffering to reach out and embrace a friend, no matter the ability or disability.

Many people with disabilities have impoverished social networks. They suffer from establishing few relationships outside of family and caregivers. Our son struggles with finding true friends.  After high school, most of his peers went separate paths. Even though Phillip is living on campus, his social circle is not as strong as he would like it to be.  But being the tenacious young man that he is, Phillip keeps trying. He has a strong Christian faith, and attends many of the campus ministry programs. Gratefully, he has found some companionship and acceptance at the “Fish House.”

Some social experts warn that Phillip’s situation is a little symbolic of the times. With all of the texting, tweeting and video games, young people are weak in developing true friendships. One social skills counselor who works with many kids with autism and other disabilities, said  mainstream parents are seeking her help.  Their so called “normal” kids are unable to interact and connect with their peers. Often,  our kids with disabilities are the “canaries in the coal mine.”  If there is something amiss at school, church or in society, they are the first ones to tank.  Our kids who live outside of the box give us a warning, teach us, and help us to learn.

True change  mostly comes from a social revolution.  If the media paint people with disabilities as being valuable and included, the masses usually follow.  One father of a child with a disability commented on the You Tube site, “Great message, even if the intent is selling beer.”

“Friendship is the most beautiful word in any language. It’s the unselfish understanding between people. It’s the aroma of life…” C.R Pearsall, founding member of an Idaho fly fishing club

Adaptability

Ten days ago,  a surgeon  cut melanoma cells from my left arm.  Since then, I have been grounded. The doctor refused to allow me to increase my heart rate up, to prevent inflammation and swelling around the stitches.  I can’t do any of my favorite things…no golf, Pilates, Gyrotonics, swimming nor power walking.

My usual hectic routine of lifting grocery bags, and running errands has been hampered.  I have had to ask people to help me pick up things, and  improvise my carrying techniques,  to do things that were once simple tasks.

This experience has made me think how people with disabilities  learn to do things differently.  My impairment is temporary, and I got the good news that the doctor cut out all the bad cancer cells.  But having an arm with limitations,  gave me a deeper understanding of how anyone can join the disability community at anytime. One in five Americans has a disability, either by birth, accident, illness or the aging process. It is a normal part of life.

Just as I needed supports to succeed in my tasks in the past few days, I better understood the benefit of assistive tools for people with disabilities. To me, it is all about adaptability.  If we don’t learn how to adapt to the changes that are needed to succeed, we all risk being marginalized. Kathie Snow, author of www.disabilityisnatural.com said it best:

“I want to live in a society in which all people are valued, included and live the life of their dreams.”

True Love

Every now and then there is a love story that grabs us.  That’s the case when this photo went viral.  The story of Jesse and Kelly Cottle is hugely symbolic.  Jesse sacrificed his legs serving his country in Afghanistan.  But the real victory is how he dealt with adapting to life’s unexpected changes.  He refused to give up and learned how to walk on new legs.

While in recovery in San Diego, he met an amazingly gorgeous woman.  The attraction between this very handsome couple is more than skin deep.  They both discovered that their connection had more to do with spiritual and emotional strength, rather than the fact that they are beautiful.

The other fabulous part of their story is how they so easily and effortlessly adapt to doing whatever it takes so they can enjoy their lives.  Kelly said she often slaps Jesse on her strong back, so they can enjoy the beach together.  Many times my husband and I would carry our son, when he was a  lighter and younger, on our backs to take him to experience the waterfront.  Often friends would marvel at our ease of  transporting Phillip this way.    There  was a great joy in our hearts that we were able to experience the outdoors together, as a family.

Jesse and Kelly have shown a nation that having a disability need not be a prescription for grief and sorrow, but a chance to celebrate life in a new way.

The Storytelling Hero

There’s a new hero in town.  She’s a storyteller. For  one  hour,  Antoinette Tuff held off a crazed gunman at the elementary school where she serves as a bookkeeper, by talking to him and telling him stories of her life.  Tuff told the  20 year old Brandon Hill stories of raising her son who has multiple disabilities and how  her husband left her  after 33 years of marriage.

Then Tuff blocked the doorway to the entry of the school, so he could not go out and repeat the tragedy at Sandy Hook  Elementary School.  We don’t know much of her personal story, but we do know it took enormous courage to stay calm and take charge.  I can’t help but believe that these are lessons she learned raising a son who gave her the courage and fortitude to deal with a really tough situation.

Hill entered the school building with an AK-47 assault rifle and allegedly had 500 rounds of ammunition.  He told Tuff he was prepared to kill and be killed.  At the end, Hill  also is reported to have shot at police, but no one was injured.

Antoinette Tuff lives up to her last name and is truly a role model for all exceptional parents.  Being a true hero, she downplays her efforts.

“I give it all to God,” she said.  “I am not the hero. I was terrified.”

We must all learn to cherish the inner strength and that raising a child outside of the box gives to us.  Now, will the Decatur School System give her a promotion? She needs to share her story on a bigger stage.

Transformations

I often wonder about the hidden meaning of the good things and bad things that happen to us.  This morning I received some personal bad news.  I have been diagnosed with an early stage of melanoma. (I was a wicked sun worshipper as a teenager.) The good news is that it probably is not life threatening and can be surgically removed. But it makes me contemplate our fragility and how we learn to adjust along many difficult paths.

Jay Ruckelshaus’ story helped me sort through my own unexpected news. As an Indianapolis high school student, he was  given a scholarship to one of the best universities in the nation, only to find his dreams dashed after graduation.  Here is an exceptionally bright young man who had a freak diving accident, and felt vanquished. But he worked through his physical and emotional pain, after spending an entire year in rehabilitation at the remarkable Shepherd Center in Atlanta. There he learned how to navigate life anew. It was a huge step for him to learn how to live as a quadriplegia in a world that is  designed for  able bodied people.

During Jay’s “gap year,” there was an outpouring of love from his community, family and Duke University.  Going to Duke became Jay’s “mantra.”  Imagining life at Duke kept  him motivated to learn how to live differently.  Once at Duke, he drove the steep campus paths in his power chair, and developed different living arrangements.  He figured out new methods of note and test taking. It wasn’t what he had planned in high school, but he transformed himself to meet the challenges. Not only is Jay a rising sophomore, but he spent a part of the summer studying at the University of Oxford, with its bumpy paths and narrow gothic hallways.

As the parent of a college student with a disability, I have travelled down some dark days before and  find great strength in our different journey with our son. It is through the difficult times that  I gain a sense of serenity.  My doctor is very confident that she is catching the cancer at a very early stage.  But I know that many aspects of my life will forever change. Although these transformations will put me on an unexpected track,  I will not only be okay, but maybe even better than ever.

Powerful and Innovative

Unexpected changes often provoke greatness. On stage, Full Radius Dance grandly  illustrates the beauty and joy of including all people. The dancers prove that limitations are restricted to our thoughts, which can be changed.

So often we want to perceive of people with disabilities as victims.  Full Radius dancers refute this simplistic notion.  The dancers defy labels. Through art, they challenge our eyes, ears and brains to think in a new way….a more inclusive way. With wheels, and without wheels they demonstrate human capabilities.

Through much hard work, trial and error,  Full Radius has developed a distinctive style and technique. The dance company is  celebrated for its artistry and leadership for awareness of what is possible, despite challenges.

They have preformed  in Italy,  and for diversity celebrations at corporations like  Home Depot.   Full Radius is also committed to education and has proudly performed in many school gymnasiums and cafeterias. They will soon appear at the All About Developmental Disabilities Legacy Breakfast Oct. 17, at the Atlanta History Center.  You can see a clip of them preforming at www.fullradiusdance.org.

Conquering El Capitan

El Capitan is a natural monument that stands 7,569 feet in Yosemite National Park.  It’s sheer cliff is so daunting that only in 1958 did humans begin climbing the slick granite rock. Sadly, this summer a climber was killed  on El Capitan.

But all of the danger and seemingly impossible obstacles did not stop Steve Wampler from trying to make it to the top.  His story is a testament to the human spirit.

Flexibility and Marriage

One of the powerful lessons that people with disabilities teach us is how to be flexible.  One of my favorite sayings is: “The best way to make God laugh is to plan.” When raising a child with a disability, one of our best tools is organization and programming. But then we often watch those best intended plans blow up in our faces. Then, we have two choices, we can stand and watch the humor of our smashed efforts or we can get really stressed.

These kinds of lessons teach us to live in the moment and appreciate our relationships better. Here’s another shocker. I believe that raising a child with extra challenges, who lives in a world that is not prepared for him, has actually strengthened our marriage.

The statistics are inconclusive about the impact of raising a child with special needs on marriages. In 2010, a study at The University of Wisconsin at Madison showed that parents of children with Autism and Developmental Disorders were almost twice as likely to divorce as couples who had children with no disabilities. A study in 2012 from a National Survey on Children’s health found no evidence to suggest that American children with disabilities are more likely to live in single parent homes that normally developing children. Even if these studies conflict, there is a strong message that raising a child with a disability is an automatic divorce sentence. This is just wrong.

Perhaps raising a child with a disability brings to the head the issues that are hidden in a difficult marriage.   The extra stresses quickly bring any problems in the relationship to the forefront.  Then the couple decides how to best navigate the challenges.

When our son, who has cerebral palsy, was diagnosed with Type I Diabetes at age 15, I wasn’t sure I could handle the extra challenges. I was mentally and emotionally sinking.  But my husband said, “We can do this. For other people this may be a real  obstacle, but we have been exercising what it means to be flexible and solve extra problems.  We are good at thinking outside of the box.” He then gave our our son his first insulin shot,  which Phillip needed to live.   This action gave our marriage an instant shot of enormous strength.

But having a person with a disability in our lives is a constant reminder of how to stay flexible.  Over the Fourth of July weekend, we felt trapped in our mountain cabin with the days of constant rain and flooding. Finally, my husband and I wanted to go out for an intimate dinner.  He is really good at making sure we spend quality time alone together.  But our son had also been indoors, and his friends were unable to take him out this Saturday night.  To Phillip’s incredible delight, we invited him to join us. Together, we had a great time and once again learned the lesson that being ready to change helps us live in the moment, and truly enjoy  life.

My husband and I have a great time with Phillip, despite initial plans for a romantic meal.

For more information about the impact of raising a child with special needs, read “The Truth About Couples With Autistic Children.”  Psychology Today, July/August.

Bocce Ball Integration

Something bad happens when young people with disabilities turn 20.  Usually their schooling, camp opportunities and therapy sessions end.  The good news is that public schools are getting better at integrating their students with disabilities into the classrooms.  Boys and girls with disabilities often have the opportunities to go to their prom and participate in many of the social events that public high schools offer.

But when students with a disability leave the high school arena, they tend to graduate to the couch or spend most of their hours on the computer in the basements of their homes. They experience an acute sense of loneliness and isolation. It is extremely tough to find  jobs, participate in social activities and maintain meaningful relationships.   Going to college seems almost impossible.

Our son Phillip intimately knows these feelings.  He spent a year after high school, not sure what direction he was going.  All of his friends had fallen away, and his church no longer offered gatherings for young people.  More then once, I went into his room to discover him sobbing into his pillow because his friends were gone.He was unsure how to make new ones.

Fortunately, he is able to go to the University of West Georgia and work on developing better friendships with his peers.  But it still is a struggle and he wants to change this for everyone. That’s why he has chosen to become an ambassador forAADD and promote integrated recreation programs through bocce ball.

Bocce ball is easy to play, doesn’t cost a lot of money for a court and could encourage everyone to play together.  There’s a good chance that this simple game could create  friendships, and help people to just have fun together.  This is a recipe   for success and better community integration.

Watch this video to see Phillip make his presentation about bocce ball. Video by Robin Nelson.