Friends Forever

By: Jo  Ann Simons
I am at Starbucks nursing a decaf and borrowing their wifi. I am not alone. Even on a Friday night on the biggest and busiest shopping day in the United States, the day after Thanksgiving, there are a few others here as well.
I didn’t come to work. I came to wait.
I just drove my son, Jon, to his 15th high school reunion and dropped him off alone at a bar. He has been looking forward to this night, maybe for the five years since his 10th reunion.  He remembers high school with happiness- being included in all academic classes, playing on the golf team, managing the basketball and lacrosse teams, coaching powderpuff, going to proms and being in the senior show.
Graduating with his class, being awarded class scholarships and with college acceptances in hand-  these were not small feats in the 1990′s.
But it’s tonight’s reunion that is on my mind. Will anyone be there that Jon knows? Will he even find the room where the reunion is being held? Will he demonstrate good decision making- I saw the list of beers he was thinking of tasting and with $50 and a credit card, it was all up to him.

On the car ride to the bar, we discussed how there might not be too many of his classmates there- they are in their mid-30′s now and many are married with children, with careers and mortgages. They may not be as nostalgic as Jon is about high school.  From my snooping on Jon’s Facebook page I could see that there were not many who RSVP’d. I prepared him but, Jon’s optimism was evident, “You never know”.
As he headed out of the car, I asked if he wanted me to bring him into the bar to find the group and he looked back with a glance and  said “I will text you.”
How long must I wait to have the assurance that he was safe and with friends? As it turned out, not very long at all because as soon as I sat down, decaf in hand, the text arrived. It simply said, “Adam Farber”.
With my eyes moist, I was transported back eighteen years. Jon was a sophomore in high school, attending the local school for the very first time and Adam was in our small car pool. It was the year that Adam wore a kippah to school.  Even in our suburban high school with a large Jewish population, Adam stood out. He was the only kid with a kippah. As I watched Adam walk into school one  morning, I realized just how special he was- he walked into the high school wearing a kippah and walking side by side, with his classmate, with Down syndrome. I saw him as a teen with courage and conviction and I wanted to hug him. I settled for telling his family how moved I was. I was also deeply appreciative.
Somehow, I am not surprised that it was Adam who first found Jon tonight.

Fifty Years Later: JFK’s Lasting Legacy

 

President Kennedy, 1963: “It was said, in an earlier age, that the mind of a man is a far country which can neither be approached nor explored. But, today, under present conditions of scientific achievement, it will be possible for a nation as rich in human and material resources as ours to make the remote reaches of the mind accessible. The mentally ill and the mentally retarded need no longer be alien to our affections or beyond the help of our communities.”
(Editor’s note: Although the language we use has changed, the hope expressed by President Kennedy remains the same)
Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers. She remarked: “As we all have been reminded over and over again about the great national tragedy that our nation endured when President Kennedy was assassinated, I noticed a Facebook entry from Anthony Shriver, the President’s nephew. He wrote about his uncle’s call to service and the great accomplishments of his short presidency in the area of disability. I thought Anthony’s message was one that should be spread and applied to the work we do at the Cardinal Cushing Centers.”
Below is the message Jo Ann sent her staff yesterday…
Staff,
Tomorrow marks the 50th anniversary of the death of President John F. Kennedy. While the media will concentrate on the tragedy and what might have been, I will be using the day to reflect upon one of his gifts to the world. President Kennedy ushered in the age of inclusion and acceptance for persons with intellectual disabilities.
Here at the Cardinal Cushing Centers, we bore witness to his future legacy when, in 1957, then Senator Kennedy dedicated Kennedy Hall in memory of his brother, Joseph P. Kennedy, Jr. This building was made possible by the generous $400,000 gift from the Kennedy Foundation.
As President, Kennedy signed the first major U.S. legislation to help people with intellectual disabilities at a time when individuals with ID were routinely institutionalized and locked away.

Photo courtesy of: http://bit.ly/1jrZEce

Inspired by the challenges in the life of his sister Rosemary, President Kennedy became a pioneering advocate for people with disabilities. He was the first president to welcome a person with intellectual and developmental disability in to the White House. Fueled by the passion of his sister, Eunice Kennedy Shriver, he established a President’s Panel on Mental Retardation. Within the National Institute of Health, he created what would become the Eunice Kennedy Shriver Institute of Child Health and Human Development. And he supported Mrs. Shriver’s  creation of Special Olympics. In the years following the Kennedy administration, Congress passed 116 acts or amendments providing support for people with intellectual disabilities and their families.
Tomorrow, I will remember exactly where I was on that tragic day but, I also will remember where we are today because President Kennedy dared to be bold. And thankful to all of you for choosing to continue part of his legacy.
I am grateful.
Jo Ann

Baseball Lessons and The Game of Life

 

Jon Derr and Boston Police Officer Horgan.

The 2013 World Series is now history, the champagne has been cleaned from the clubhouse floor, the parade is over and the confetti has been swept from the streets of a grateful city. Yet long after the players have dispersed to their non-baseball hometowns and our region's thoughts have turned to Super Bowl and Stanley Club dreams,   conversations continue about this year's victorious  Boston Red Sox. On my long commute each day, I have been listening each morning to sports radio dissecting this historic winning season and the players.

This team had been doubted and demonized and  the fans showed their apathy by ending   the longest sold out attendance streak in Major League Baseball.  Much was said about the  dearth of superstars which have historically been the foundation of a team and its fan base.  Boston's fan base had deteriorated after the team's dismal 2012 season amid talks of beer and fried chicken in the clubhouse.

Someone forgot to tell the baseball players they had been counted out-by their fans, by the Boston sports writers and by baseball.

They had something to prove and they delivered it with a passion and love for the game. Sometimes with a flair for the dramatic-how else can you explain those 9th inning walk off home runs?

 

They were relentless. They came together as a team with little regard for what others had to say about them.

As I continued to listen to sports radio, I began to think of another team that sounded very much like our 2013 Red Sox. A team that I know very well- families of children with disabilities.

 

We are relentless in standing up for our children to be included in all aspects of life-education, housing, employment, sports and leisure activities.

We do not care about what others say about us. We know the work that we need to do it and we do it. Too often, very much alone.

When it comes to our children, we might be dreamers but, what parent is not allowed to dream?

Realistic? Do not count our children out. We don't settle for realistic. We set the bar just higher than anyone else thinks it should be. And then we watch with pride when they meet high expectations.

And we prove the pundunts wrong. Every day.

 There will not be champagne when our goals are met.

There will not be a parade for us when we are victorious.

We will not be considered heroes.

 But, each and every day, we do the heroic and while we are not looking for full page ads in the Boston Globe congratulating us for our achievements, awareness, recognition and inclusion by our communities would be nice.
 

And  more public support and funding.

The 2013 Boston Red Sox made our town better and even in this baseball crazed town,my child makes my life and my community better.

 

Every single day.

 

 

The Abysmal Truth About Abuse And Disabilities

The Abysmal Truth About Abuse And Disabilities   By: Jo Ann Simons Originally appeared in the blog, Zeh Lezeh (For One Another)  The Disability and Abuse Project released a report in early September that gives low grades to state and local agencies for failing to respond adequately to widespread abuse of children and adults with disabilities. The press release states: “The Report -- "Abuse of People with Disabilities: Victims and Their Families Speak Out" -- analyzes the results of what may be the largest survey of its kind in the nation.  More than 7,200 people took the survey which inquired into the experiences of people with disabilities as victims of abuse and bullying. Family members, advocates, service providers and various types of professionals also responded. Over 70% of people with disabilities said they had been victims of abuse.  More than 50% of these victims had experienced physical abuse, with some 41% having been victims of sexual abuse.  Nearly 9 of 10 respondents with disabilities had suffered verbal or emotional abuse. Most victims said they had experienced abuse on more than 20 occasions. About half of the incidents of abuse were not reported to authorities.  When reports were filed, fewer than 10% of alleged perpetrators were arrested. Only one-third of victims received therapy and fewer than 5% received benefits from victim compensation programs.” Sadly, while I did not participate in the survey, my personal experiences support these findings. My son, who is now a well-adjusted, employed, home owning man with Down syndrome, has been physically abused, sexually abused, bullied and verbally abused.  I have not kept track of the number of occasions that this occurred but I am sure that it is close to the 20 occasions that most victims reported. I reported the most serious offenses to the authorities. Their reaction was mixed. The high school assistant principal didn’t care about calling out the classmate who shouted to us as we drove to school, “There goes the retard.” The middle school principal tried as best he could to figure out how Jon received all the scratches on his body after a gym class. The local police department arrested the young man who sexually abused Jon as his transportation provider. They were very supportive in getting Jon’s story and believed the 8 year old with Down syndrome. Maybe it was because the perpetrator was known to them. The district attorney was very interested in the case but, eventually didn’t think they could get a conviction under the archaic system that would have required Jon to face his accuser in an adult court room. We wanted the school system to be accountable. We questioned why they were still allowing the driver to transport other children, after pulling Jon from the transportation, since we presented evidence that he abused Jon and others were at risk. We faced a belligerent school system that preferred to bury their head in the sand and then hide behind their expert witnesses whose credentials included discrediting children as witnesses. In the end, we settled, reluctantly.  We used the small sum of money, funds that could never begin to undo the damage, towards the fabulous celebration of achievement that was Jon’s Bar Mitzvah. We all suffered. Our family was almost torn apart by this horrific abuse. Some of my family was in denial, others were as pained as I was. While we tried to shield our five year old daughter, her keen sense of hearing allowed her to listen to our quiet conversations with Jon. I have no idea how we found the explanation to answer her query: "The man driving him to school did that to him?" Somehow, we found the words, the strength and the love to move forward; though I am still haunted by the possibility that the abuser has found other victims. So I regularly check the sex offender data base. Just to be vigilant. The abuse itself may have ended but its effects linger.

The Way He Is

by: Jo Ann Simons

This originally appeared on the blog Zeh Lezeh.

The news that scientists at the University of Massachusetts Medical School in Worcester have discovered a way to turn off the chromosome that causes Down syndrome is creating quite a buzz in the news and in clinics, hospitals and homes worldwide.
People are born with 23 pairs of chromosomes, including two sex chromosomes, making a total of 46 in each cell. Individuals with Down syndrome (or Trisomy 21 as it is also called) are born with 3 copies of the 21^st chromosome. The expression of this extra genetic material causes an array of medical and developmental challenges. People with Down syndrome have intellectual and learning challenges, early onset of Alzheimer’s disease and they are at a greater risk for congenital heart defects and leukemia. They are also short in stature.
The possibilities are exciting. In the future, the ability of scientists to turn off the expression of the extra genetic gift that causes Down syndrome could alter the medical and cognitive problems associated with it.
This news hit my home directly and personally. Over 20 years ago, I learned that the human growth  hormone used to treat children’s growth disorders could have applicability to increasing the height and perhaps the head size of my son, Jon, who has Down syndrome.  Since the treatment was not covered by insurance, except in certain circumstances, it came with a very high price tag.
It also came at the same time that we received a small settlement as a result of abuse that Jon had suffered by the individual driving him to school. We had an opportunity and we now had the way to fund it.  Before making a decision, we consulted with physicians and medical ethicists.  They asked us to consider the needs of our entire family versus the gains that would be achieved by one member of the family.

Jo Ann and her son Jon

My husband said he would support it if there was a guarantee that it would not affect his sweetness, humor or affection.

Because we love him the way he is.

Jo Ann Simons is and President and CEO of the Cardinal Cushing Centers and a Disability Advisor to the Ruderman Family Foundation

United We Play

Recently I blogged about one of those heartwarming stories where an individual with a disability gets a moment “in the sun” to switch from team manager and play the final seconds in a basketball game or catch a pass in a football game.


I acknowledged the “feel good” nature of the story and the joy and happiness it brings to the individual, their family and to the community. I also questioned whether it was actually helping us achieve a truly inclusive society that values everyone.

What I probably should have said is that we need examples of real opportunities and not “tokens”. Tokenism does not move us forward. Fortunately, I did not have to wait long to see real opportunities.

Two weeks ago, in Worcester, Massachusetts and other locations in central and western Massachusetts, almost a thousand athletes competed in the Winter Games of Special Olympics Massachusetts. I was among the proud spectators who watched almost a dozen Unified basketball games.

Unified we pass and shoot

Unified Sports actually began in Massachusetts and is now part of every single Special Olympic sport throughout the world. Unified Sports is dedicated to promoting inclusion through shared sports training and competition experiences. Unified Sports are joint teams of people with and without intellectual disabilities. It was inspired by a simple principle: training together and playing together is a quick path to friendship and understanding. It has been my experience that it also leads to developing a social network which can result in job leads and employment opportunities.

In Unified Sports, teams consist of people of similar age and ability, which makes practices more fun and games more challenging and exciting for all. I was particularly drawn to my son’s team, LIFE Force, and I watched them play with heart, dedication, determination and skill. They were well coached, trained and disciplined.


They came in fourth, missing the medal round after posting a 1-3 record. Each of their losses was decided by a basket. The play was physical- there were elbows, blocking and a player even took a fist to the face. It was a real basketball game and it was well refereed.

Their lone win, the last game played, came after an emotional pep talk by their coach to the team to remind them that they were playing for Chris, a team member who had recently died after a short bout with cancer.

There were hundreds of “feel good” moments for me and among them was the selfless passing of our son, Jon, the points he scored but nothing greater than the grace he displayed in losing. Of not being on the medal stand and telling me that while he wished they had won, he made “many new friends this season.”

Every time Jon sets foot on a basketball court, soccer field or a golf course, he enjoys “days in the sun” and they are more important than a moment.

This originally appeared on the blog, Zeh Lezah of the Ruderman Family Foundation.

Being All We Can Be

This post originally appeared on Zeh Lezeh (For One Another) published by the Ruderman Family Foundation.

By Jo Ann Simons

Can you see both sides of a story or is that being wishy washy? I ask myself that each time the television brings us another story of a student with autism making a three pointer on his only appearance in a high school game or the kid with Down syndrome suiting up for a play on the varsity football team. Is it inclusion or exploitation? Is it something to celebrate or something to discourage?

No doubt the events bring positive exposure and feelings of great joy to the individual, the family and even their community.

I think it might actually set us back on the road to a society where diversity is valued and embraced.

In the fight for inclusion, we are asking for acceptance. We are asking to be given the same opportunities as others. So, why does this bother me so much?

We can’t all be athletes

Not everyone makes the varsity athletic teams. That is why junior varsity and club sports exist- for the enthusiast without the skills to compete at the highest level. Some of the most enthusiastic lovers of sport do not have athletic skills and there are still meaningful roles for them to fill- managers, coaches, trainers, announcers, statisticians, locker room attendants. Bob, our usher at Fenway Park loves baseball and the Red Sox more than the next guy but, that does not give him the opportunity to take batting practice with the team.

Likewise, my daughter, in spite of many years of playing field hockey, never made the varsity team nor was she given the opportunity to suit up for a play that was “set up” to make her feel good. Her softball coach suggested she might find another sport. Such is real life. In the era where everyone is a winner, she learned the truth. It might have been the most important life lesson she learned.

When Jon, my son with Down syndrome, announced at age 12 that he wanted to coach the Boston Celtics, I shared with him the truth-gently. I told him that most coaches were former NBA players and he was not going to be tall enough and even his father was not good enough to be an NBA player. However, if he wanted to be a coach, he could. We would find a team where he could help. We talked about helping out the “Biddy Basketball” team at the JCC. Later, Jon did help and he went on to manage his high school basketball team and today he helps out the local middle school team. And he plays Unified Basketball on a Special Olympics team.

I have no doubt that Jon would have been deliriously happy to have been able to suit up for just one minute of just one game for his high school team. And I know that he would still be talking about it today. I would have also been over the top with happiness with the joy it would have brought to Jon.

It would not have been a good lesson. The world he lives in successfully gives him opportunities to work in his dream environment-on a golf course. He gets to golf as much as he can. It does not give him the opportunity to be a golf pro.

Acceptance for Jon begins with Jon. He has accepted, after a long journey, that he has a disability. He knows he will never be able to some things. He doesn’t dwell on what he won’t be. We celebrate him and that includes his disability. If we try to take it away from him, in ways that are not real, we take away who he is.