How I got on the bully pulpit

“I don’t think the worst thing that could happen to me is raising a child with special needs.  I think the worst thing is to raise a child who is cruel to those with special needs.”

Stop-Bullying smallThese are the words of a man named Joseph, who has a son with multiple health and disability challenges. Joseph writes on his blog Undiagnosed that his biggest fear is that one day his son Braxton will go to school and be the target of bullying by other kids.

I’m sure this same fear plagues all parents, but especially those who have kids with special needs.

Bullying is very common among young children. Experts say at least 10 percent of children are tormented by their peers.  I was one of the unlucky 10 percent when I was in elementary school, and I can still recall the sharp pain I felt at being mistreated by other kids.

Uncle Melrose got bullied

My Uncle Melrose, who had an intellectual disability, was bullied as a child. Other kids in his neighborhood taught him to say curse words and they physically challenged him. My dad, Melrose’s brother, defended him.

It is hard to describe the pain and shame a child feels after being bullied. I can’t begin to comprehend how a special needs child, who has fewer coping tools than I did as a youngster, can deal with this kind of abuse.

When it comes to children with disabilities, it occurs to me that their best allies against persecution are their parents, teachers and other advocates. Adults who have an understanding of and empathy for children with disabilities can model and teach respectful behavior.

Mainstreaming and inclusion are also beneficial. Children may be less likely to ridicule if they are familiar with and have an understanding of another’s frailties.

Children need more exposure to disabilities

This fact was brought home to me by a young father who heard me speak about my relationship with Uncle Melrose. I had delivered the same presentation several weeks before and this man and his 10-year-old son were in the audience for that earlier talk.

The father told me that the speech had a big impact on his son, who told his friends and relatives about it.  I don’t know this for sure, but I suspect this boy hadn’t been exposed to such a personal story about disabilities.

The father suggested I consider giving my presentation to groups of children and that idea intrigues me.  After all, my purpose in writing about Uncle Melrose was to let the world know what a great guy he was. Perhaps my talk can have an impact on youngsters who have had little to no exposure to the world of disabilities.

What do you think? If you have any ideas or suggestions on where I might talk about my friendship with my Uncle Melrose in front of children, I’d be interested in hearing them.

Foster Grandparent Program makes its mark

Foster Grandparent Program

Courtesy Corporation for National & Community Service

It’s been almost three decades since I left the field of journalism, where I worked as a reporter for newspapers and two wire services. Most of the stories I covered in my 12 years in the field were somewhat routine and I forgot about them as soon as the newspaper hit the newsstand the next day. But a few will forever remain etched in my mind.

One of the most memorable was on my first job at the Lubbock Avalanche Journal. I was assigned to write a feature story about the Foster Grandparent Program at Lubbock State School.  This program was started during John F. Kennedy’s presidency – not surprising, since he did so much to improve the lives of people with disabilities.

Seniors volunteer

The federally backed program, which is still in operation, recruits senior volunteers to work with school children and those with special needs.  Most of the seniors volunteer their time, but those with financial need are paid a stipend.  Such was the case with the senior lady I interviewed that day in the mid-1970s.

I don’t remember her name, but I do recall she looked rather grandmotherly. And she was completely devoted to the young girl she was assigned to.  They met me on a veranda outside one of the state school buildings one spring afternoon. And the foster grandmother shared their story with me.

Her teen-aged companion (I don’t remember her name, either) could not speak and was in a wheelchair. She could not control her arms or legs, all of which jerked in spasms. But she smiled and seemed to revel in her time with her “grandmother.”

This foster grandmother was open about the fact that she got paid to be there; it was one of her only sources of income and she needed the money. But she made it equally clear that she adored her young friend and loved spending time with her. I got the feeling that even if there weren’t any monetary compensation, she would be at Lubbock State School every week anyway.

We all have gifts to share

This lady discovered what I found out years later when I would spend time with my Uncle Melrose – that people with disabilities have much to offer. We just have to take the time to be with them and open ourselves up to receiving the gifts they have.

Wolf Wolfensberger, the psychologist and academic who devoted his life to advocating for and researching people with disabilities, said these individuals have a number of strengths to share:

  • A natural spontaneity
  • Generosity and warmth
  • Honesty and a trusting nature
  • The ability to engender gentleness, patience and tolerance from others

I certainly found all these traits in Uncle Melrose. I’m betting that my foster grandmother of so long ago found the same things in her young friend.

[Note: See previous post on the Foster Grandparent Program.]

The Kennedy legacy

When most people think about the Kennedy dynasty, they think of politics and power and wealth. How could you think otherwise when three of the Kennedy brothers became U.S. senators and one became president?  One might also think of tragedy and heartbreak – with the assassinations of John and Robert and the deaths of Joe Jr. on the World War II battlefield and Kathleen in a plane crash.

Of course, when I think of the Kennedy legacy, I think of all these things. But I also reflect on all the family has done to advance the standing of people with intellectual disabilities. As is so often the case among people who take up causes, the Kennedys had personal experience with disabilities. John’s oldest sister Rosemary had a disability of some kind – the family always said it was an intellectual limitation. There is some debate about that diagnosis; nevertheless, Rosemary was the impetus for the family’s activism in the field of disabilities.

The Kennedys as activists

Rosemary’s younger sister Eunice prevailed upon John, when he became president, to establish the first President’s Committee on Mental Retardation. During his administration, he was the first president in history to welcome a person with an intellectual disability into the White House.

Later, Eunice and her husband Sargent Shriver founded the Special Olympics, providing athletic competitions worldwide for people with intellectual disabilities. Today, millions of athletes participate in sporting events in 170 countries.

The Shrivers’ son Anthony Kennedy Shriver built on their legacy by founding and building Best Buddies, an organization dedicated to creating one-to-one relationships and employment opportunities for people with intellectual disabilities. It is a volunteer organization, pairing college and high school students and adults with peers.

Best Buddies recognizes that people with intellectual disabilities are often excluded from society. By creating meaningful friendships, Best Buddies seeks to change public perceptions and to help people with intellectual disabilities live richer, more meaningful lives.

My dad was a Best Buddy

As I’ve mentioned in previous posts, decades ago, long before the founding of Best Buddies, my dad filled a similar role for his younger brother. He tried to include his disabled brother in neighborhood baseball games and he protected him from tormenters. Later in life, I became my uncle’s Best Buddy, taking him out for hamburgers and for rides in the park.

As I’ve learned in writing about my uncle, people with intellectual disabilities want the same things as everyone else – love, belonging, and a sense of purpose. I’m grateful there are organizations like the ones the Kennedys founded to help people with special needs find a place in this world.

The sibling syndrome – revisited

After my last post about siblings of people with disabilities, my friend Rachel Simon (who wrote the very fine book Riding the Bus With my Sister) pointed out that there is an excellent organization that helps with sibling issues.

It’s called the Sibling Support Project, a nationwide support system for brothers and sisters of people with special health, developmental or mental health needs. The project trains service providers throughout the United States on how to implement the Sibshop program. This program helps siblings know they are not alone with their unique concerns.

Support for siblings of all ages

The project seeks to provide support not only to children but also to teens and adult siblings. An excellent video has been released about the sibling project. It features siblings of all ages talking about the joys and trials of having a family member with a disability.

I am so glad that our society is open enough to talk about such issues and to find ways to help families cope with disabilities. I only wish these services had been available when my Dad was growing up during the Depression.

His younger brother, my Uncle Melrose, had an intellectual disability and at the time, there were no services to help the family. My uncle couldn’t even go to school because there were no special education classes.

A childhood lost

As a result, my Dad — the oldest of five children — was called into service to take care of Melrose. My Uncle, who was nicknamed Pie, was anything but the saying “easy as pie.” He was often frustrated at his limitations and in response, he threw violent tantrums. He couldn’t dress himself and he needed help with almost everything. My Dad became his caretaker.

The situation robbed Dad of much of his childhood. I have often wondered how his life — and Uncle Melrose’s — would have been different if the world had been more open to them.

I’ve wondered what Pie might have learned if he had been able to go to school. And I’ve wondered if Dad could have been more emotionally open if he had been able to be around others who understood his situation.

The sibling syndrome

Being a sibling of a child with an intellectual disability can be life-defining. I know, because that’s what happened to my father, the oldest of five children — one of whom had a severe intellectual disability.

Dad grew up during the Depression and so he didn’t just have to deal with a disabled brother, he had to cope with poverty. His father was a traveling salesman and he was gone all the time. Dad’s mother relied on him as the responsible one.

Research

Not much research has been done on the impact of having a sibling with a disability. As physician Ranit Mishori, who has a brother with autism, points out in the Washington Post, most research has focused on the parents and how their lives are affected. Any research on siblings has been aimed at academic performance and mood disorders.

Experts who have worked with older siblings report that they feel an overwhelming sense of responsibility. Younger siblings, who have never known life without a disabled person in the family, seem to have less difficulty adjusting.

For my dad, having to take care of his brother robbed him of part of his childhood. When Uncle Melrose would have a tantrum, Dad would have to take him for a ride in the car to calm him down. When Dad would play baseball with his neighborhood friends, he would find a way for Melrose to participate and not disrupt the game.

Dad helped his brother dress and eat and he took him to the bathroom. I’m sure there were other routine tasks he helped with as well.

Guilt, anger and pain

When Dad graduated from high school, he moved out of the house and got a job. His parents, who had relied so heavily on him as a caretaker, found they couldn’t handle Uncle Melrose and they sent him to live in an institution.

I don’t think Dad ever got over the pain and anger of his parents’ decision. And I don’t think he ever got beyond feeling like the responsible one in every situation. He learned early on to suppress his feelings and he was never able to become emotionally present.

Being the older brother of a sibling with an intellectual disability was a two-edged dagger for him. It cut him two ways — one bad, the other good. It damaged him for life but also made him one of the most unselfish people I’ve ever known.