I’ve been thinking about my friend and her heartfelt desire not to be defined by physical limitations caused by a chronic and incurable disease. I bristle at the thought that anyone would make assumptions or label her based solely on limitations. I suspect anyone doing so would be a stranger. Those who know her know she’s so much more than any limitation.
Defining someone by disability isn’t the only way we short change ourselves or others. Consider all the assumptions we make based on casual observation, something we’ve heard, or attitudes instilled in us. These “settled ways of thinking” can become so ingrained that we rarely question their validity. Experiences and observations that challenge our beliefs raise doubts. Being willing to face our doubts takes an open mind and heart. Once we start questioning one attitude, we likely become more willing to re-consider another. This can put us at odds with family and friends. Battles to change popular opinion can be fierce and long. And some people never change their view.
Attitudes towards women, race, sexual orientation, religious tolerance have changed dramatically in my lifetime, yet battles rage on, passionately and stridently. I’d welcome a paradigm shift to self-reflection and compassion. To ratcheting down the volume in an effort to learn how to sit with those whose beliefs differ from ours, engage in dialogue, find common ground where we can, show respect and be respected.
Not so long ago, tattoos were a fringe practice. Something men might choose to get, and those who did were primarily soldiers, sailors, marines, …and bikers. “Nice people” didn’t “go there.” Then attitudes began to shift, beginning, of course, with rebellious youth, both males and females. Initially being taken seriously professionally required folks to keep their tats under wraps, either by personaldecision or employer dictates. Gradually the practice became mainstream, and fewer and fewer restrictions apply in the workplace. Tattoos have become more elaborate, more an art form than a carnival side show. Such shifts in attitude are seismic. Now anyone can embrace body art, and anyone who doesn’t want to, doesn’t.
Recently I received an email from a friend. She was writing to family and friends, with encouragement from her internist of many years, to address an elephant in the living room. She experienced progressive symptoms affecting her ability to walk months before being diagnosed with the rare, chronic, progressive, auto-immune disease CIDP,for which there is no cure. If the only USDA-approved treatment continues to manage her symptoms, she can hope to be among the 90% who can walk without aid, except during periods of regression.
A resilient woman who weathered Guillian Barre Syndrome as an adolescent, she has remained physically active, despite knee and ankle surgeries. Many who know her likely assigned her increasingly halting gait and occasional use of a cane, to the ravages of injury and age and would ask how her ankle was. You see, except for those she trusted most, she’d kept the new diagnosis under wraps. That’s her prerogative of course.
The internist, however, encouraged disclosure believing she will benefit from help and support from family and friends as she navigates the challenges and obstacles before her. None of us can make those disappear. We would, if we could. Like her, we have to accept the chronicity of CIDP. What we can do is rally around her, become her teammates. Encourage her to remain optimistic and to continue adjunct practices that improve her quality of life. Such a commitment of time and energy would be a challenge for all of us. Think about people who resolve to exercise regularly, then falter. Having someone hold us accountable improves the likelihood that we’ll stay the course.
We can, as now she’s given her permission, insist she use a cane or walker when safety or comfort dictate. I’m thinking we can also add artistic and creative flourishes to that cane and walker. Take “if life gives you lemons, make lemonade” to a new realm. Shall we knit bomb or decoupage a cane? Maybe both. Having a choice of canes has its advantages.
Writing that email was hard for my friend. Independent, not one to ask for help, yet quick to respond to the needs of others, she has never wanted to be defined by her physical limitations. She fears that CIDP with its chronicity and incurability could alter the way people think of her.
That’s what prompted me to write this blog. Would anyone of us like being defined by a single attribute? I think not. We’re all so much more than any single trait could suggest. Yet, like gender, race, and ethnicity, some limitations are so obvious that we’re apt to register the limitation as a primary attribute. That’s a disservice. When we define a person by disability, we’re being disrespectful.
In response to her fear, I emailed a list of all the qualities she possesses that make her who she is and assured her that those distinctions are more important than physical limitations. I also urged her to take names of any who appear only to see her limitations, promising to get up a posse and kick butt for her.
Honestly I cannot imagine anyone who knows this woman being anything but supportive, but you never know. I better get back to Tai Chi. Just in case my “services” are needed. I made a promise after all;-).
We’ve all heard the adage “one thing leads to another.” That happened when I was putting together the posts on certified child life specialists pursuing their passion in nontraditional ways. One guest, Morgan Livingstone, urged me to contact Andrea Standish and invite her to write about Standish Foundation for Child and Family Centered Healthcare. Following her advice, I emailed Andy who graciously agreed to share her story, including a field report showing how implementing simple, effective, and sustainable practices creates positive change not only for children and their parents but also for healthcare professionals.
“There is no profit in curing the body if in the process we destroy the soul.” -Samuel Golter
These words inspire the work of Standish Foundation for Child and Family Centered Healthcare where we aim to dramatically change the hospital experience for kids and their families.
In 2010, I started the Standish Foundation for Child and Family Centered Healthcare. The organization was named after my husband Michael Standish in recognition of his long-time support of my passion to help ill children and their families. As a certified child life specialist and educator, I’ve worked extensively to support the rights and needs of ill children and their families. My work has taken me to fourteen countries, and I hope to spend the rest of my life working to introduce sustainable child and family friendly healthcare practices globally.
It’s simple really. We love kids and believe kids shouldn’t suffer. At Standish Foundation, we work to minimize the pain and suffering of hospitalized children.
Hospitals can be intimidating and medical procedures can be scary – especially for children. A hospital stay can be filled with stress, fear, anxiety and pain. But it doesn’t have to be filled with suffering.
Standish Foundation for Child and Family Centered Healthcare empowers medical professionals with training, mentoring, and resources to effectively deliver child and family-centered care. We help hospitals provide hope and healing to children and families.
Our team is made up of volunteers who live and work in 12 countries and range from eight to 68 years old. We are patients and parents, nurses, psychologists, pediatricians, child life specialists, music and art therapists, play therapists, and professors.
We believe that health care free of suffering is a right for all, not a privilege for a few. We honor and help implement healthcare standards in accordance with the UN Convention on the Rights of the Child.
You can learn more about the UN Convention on the Rights of the Child, by reading FACT SHEET: A summary of the rights under the Convention on the Rights of the Child.
Among hospitals partnering with the Standish Foundation is Augusta Victoria Hospital in East Jerusalem. This field report shows the positive impact of using Comfort Positions and distraction techniques during procedures and play before and after.
Our goal for this trip is to work with the nurses, nurse managers, and doctors to help develop their practices and policies on the use of “Comfort Positions.” These positions incorporate the parent into the procedure and include other best practices for reducing stress for the child.
Comfort Positions were developed by Mary Barkey, CCLS and Barbara Stephens, CRRN and involve the use of sitting and hugging positions rather than restraint. Parents are invited to hug/hold the child or at least be very close by while the procedure is being performed.
The staff at AVH are known for their kindness and compassion. Adding Comfort Positions to their practice is a logical next step. We’ve spent the week working with staff. A new play area is set up, a social worker is here, and we’re ready for the clinic to open.
Many of the children we are seeing are having a blood sample taken or IV/Cannula inserted. This may seem simple to an adult, but for a child, it is terrifying. Most of these children have been undergoing treatment for a while – they know what’s coming. For many, it was scary last time, so why would it be different today?
Today, patients are playing before and after their procedure. Comfort Positions are used and the child is sitting in the parent’s lap or sitting up in a chair. They are soothed and distracted, and then praised and validated after the procedure for doing a good job.
There were very few tears, a lot of laughing, smiling, and playing. In fact, a curious physician came into the clinic because he hadn’t heard any crying. He was delighted and said he hadn’t imagined that the few changes would make such a great impact for children, parents, and staff. Everyone was happier!
This is a great testament to the importance of PLAY! The sweet children here in Jerusalem inspire us with their warmth and playfulness. We are to happy to be a part of this team effort with the patients and parents, nurses and social worker.
Wishing you hope and joy,
Learnmore about the work of Standish Foundation and ways you can support their efforts to bring child and family-centered healthcare to hospitals worldwide. Donate online or contribute items from their wish list. I like their Ways to Help Us list. How often are we offered non-traditional ways to offer our support?While not everyone has frequent flier miles or hotel points to share, we can review the website, share their story on social media, and add our prayers.
There’s even a way to get the kids involved. Standish Foundation welcomes new and gently used Beanie Babies. Organize a Beanie Baby Drive. You’ll not only be collecting Beanie Babies. You’ll be sharing the story of the Standish Foundation and its goal of minimizing pain and suffering among hospitalized children worldwide. And, on a personal level, you’ll be modeling the generosity of spirit you want to blossom within your children.
An attitude of gratitude leads to generosity of spirit. Giving money. Giving of our time and using our talents to benefit others. Acts of kindness, large and small, make a difference. A simple smile can lift someone’s spirits and turn a day around. That’s powerful.
Giving Tuesday, following Thanksgiving, is a call to action, an invitation to give. Take up the challenge. Find a worthy cause, one that speaks to your values, and explore ways to support its mission. Consider what you like to do and find a way to turn your passion into action.
Looking for inspiration? Meet Na’ama Uzan, a six year old from Toronto. Her brother Nadav ignited her desire to raise money to find a cure for Angelman Syndrome, a rare genetic disorder characterized by developmental delays, minimal or no speech, lack of balance, an inability to walk, and intellectual disability. Seizures, often frequent and debilitating, are common among those with AS. Na’ama hopes that Nadav and “all the Angelman kids will be able to talk and not have seizures and epilepsy.”
And Na’ama does what she can to turn her hopes and dreams into reality. When she opened a lemonade stand in 2014 to raise money for FAST, the Foundation for Angelman Syndrome Therapeutics, her story went viral, creating a ripple of awareness and support worldwide. Kids in Toronto began volunteering to help run her stand and others, continents away, began opening lemonade stands of their own to support finding a cure for AS.
With her passion and a plan of action, Na’ama prompts others to get involved whether through a financial contribution, a fundraising project, or as a volunteer. She shows the power of one person to make a difference and motivate others to do so too. We salute Na’ama for her can do spirit and ability to inspire action, and challenge others to be inspired to fundraise for FAST too.
Valentine’s Day is upon us, giving us an opportunity to tell someone we love what we love so about him or her. Make a list of the person’s attributes, anything and everything that makes that person special to us. This works well for everyone you love, children and adults. No exceptions.
Maybe it’s how the person lights up a room simply by being in it. Easy rapport. Ability to put people at ease. Grace, graciousness, poise.
Generosity of spirit. An attitude of gratitude. Spirituality. Practicality. Brilliance. Common Sense.
Consider a quirky sense of humor, hearty laugh, or ready smile. Spontaneity, flexibility. Being unflappable, cool under pressure, willing to go with the flow, mellow, laid back. Think sense of adventure and delight in play.
Think dependability, reliability. Persistence, resourcefulness, willingness to take on challenges. Creativity and problem solving skills count.
Joy in shared experiences. Always being there for you. Supportiveness. Being a source of encouragement.
Perhaps it’s a passion or a talent. Something the person excels in or simply enjoys doing that delights you.
You get the idea. Now, be creative in letting the person know. One way could be to list what you love about the person, then write each lovable attribute on a slip of paper, fold into an accordion and deposit inside a Chinese take-out box. You could decorate the outside, sprinkle a touch of colorful confetti or hide trinkets, perhaps a tiny heart, inside the box among the messages. Tie a ribbon on the handle and surprise your special one.
Recently my 93 year old Mother completed a six year journey with lymphoma. Deeply spiritual, she chose to live simply and embrace life, challenges and blessings alike, with eyes and heart wide open. As a nurse, Mom knew the path she was on. As a person, she chose how she’d travel: fully engaged, embracing joy, showing gratitude.
Just ask her hospice team. One and all grew to love this woman who lived the prayer of St. Francis of Assisi, asking not so much “to be consoled as to console, to be understood as to understand, to be loved as to love”. Mom chose a faith based hospice and embraced its practice of offering to pray with the patient at the end of a visit. Everyone was amazed when, visit after visit, Mom added her own prayer for “this angel who came to help me” and the organization as a whole. This practice continued until she became too weak to speak. Even then, I suspect Mom heard the prayers and responded with silent ones.
There’s a lesson here. While we cannot control everything that happens, we can control how we respond. My Mother was not perfect, but she understood perfectly that how she played the hand dealt her would make all the difference. And so it is for all of us.
We all know at least two ways of looking at the world. In one, our glass is half empty. In the other, it’s half full. I doubt anyone lives either philosophy exclusively and absolutely. Depending on circumstances and resilience, we fall somewhere between these extremes. In any situation we need time to consider what is and what we might do with this new reality. Is it as bad as it could be? Is it all we ever dreamed possible? It could always be worse. Nothing is perfect. These are simple facts. In reality, the situation is likely “the best we can hope for, under the circumstances” or “as good as it gets.”
We decide how we’re going to live our lives. Will we sink into despair and hold a grudge against our fate? Will we “accentuate the positive” and celebrate what’s best in our lives? Likely we’ll find a middle ground.
I recall reading how one woman responds to anything that leaves her feeling her glass has dropped to a new low. She gives into her misery, sets a timer, crawls into bed, pulls up the covers and “wallows in pity” until the timer goes off. That’s when she gets up, takes a deep breath, exhales all that negative energy, and moves forward. She does not deny her feelings. She acknowledges, even embraces, her negative emotions, but only briefly. She may not be able to change whatever elicited her initial response, but she chooses to “take the high road.” In so doing, she enriches her life and the lives of those around her. She gives herself a gift and becomes a mentor to others.
As Thanksgiving approaches, let’s be alert to all that’s positive in our lives and be thankful. Let’s nurture an attitude of gratitude. Compile a list of all our blessings. Make this a daily family practice leading up to Thanksgiving. Then when the family gathers for dinner, pass around the list and invite everyone to share in reading aloud reasons we have to give thanks.
That’s one way to be mindful of what’s best in our lives. How do you cultivate an attitude of gratitude and mentor others in doing so? We’d be delighted if you shared your “secrets” with us.
We are thankful you have chosen to be PlayopolisToys customers, and we wish you a Happy Thanksgiving.
Days are growing progressively shorter and nights longer as we approach Winter Solstice. With the arrival of autumn, our hours of daylight steadily declined, temperatures fell, and we began to spend more time indoors. Holidays bring light and warmth, both metaphorically and literally, into this darkness.
Thanksgiving draws families and friends together to celebrate the harvest, share the feast, and express gratitude for the blessings of our lives. Living mindfully, being tuned in to all that is good in our lives allows us to recognize our blessings and live gratefully everyday. I recall my mother reminding us children that “you don’t have to look far to find someone worse off than you are.” That’s the truth, no matter what’s going on in our lives. Family, friends, bountiful food, and heart-felt gratitude are indeed defenses against the darkness.
Chanukah is the Jewish Festival of Lights commemorating the victory of the Maccabees, the rededication of the temple of Jerusalem, and the miracle of the oil that burned for eight days. Hence the tradition of lighting a candle each night of this eight day celebration.
Christmas is also a festival of lights. Remember the Star of Bethlehem? Moravians hang a 26-point star from the first Sunday of Advent through Epiphany. Advent wreathes include five candles, one for each Sunday leading to Christmas and a fifth candle for Christmas Day. Before the advent of electric light bulbs, candles illuminated Christmas trees. Freshly cut trees were decorated and candles lit on Christmas Eve. Electricity affords safer and brighter Yuletides and allows more lights to brighten more places indoors and out.
The burning of a Yule log, a large wooden log, in an open hearth is part of traditional Christmas celebrations in numerous European cultures. It can be part of Winter Solstice festivities as well as the Twelve Days of Christmas, Christmas Eve, Christmas Day, or Twelfth Night also known as Epiphany. These days most of us think of dessert when we hear the words Yule Log, but then who among us has an open hearth for lighting a large wooden log?
However your family celebrates, we wish you peace, love, and joy.