Tuesday, January 3, 2023

Disability Reads: Understanding Autism Through "The Reason I Jump"

By Kara Jackman

For the last few years, I've been striving to learn more about autism. I read blogs, books, spoke with friends and family, medical professionals, and educators about autism and Aspergers syndrome. Page after page I tried to get a sense of what it was like to experience the world in the way people with autism do. I wanted to learn more about how I could be a better employer, family member, friend, and advocate. This year I finally found the book I was looking for in the young adult section of my local library. It was recommended to me by a friend in the disability community. The book is titled, "The Reason I Jump" by Naoki Higashida and David Mitchell.

Everyone should read this book that shares in question and answer form, the whys and hows of what it is like to be on the autism spectrum. I walked away understanding that the majority of what people with autism experience is worry about how their typically-presenting family and friends feelings. Question after question was answered by Naoki with some form of my-body-and-mind-are-calling-me-to-do-this-thing-and-all-the-while-I am-concerned-about-how-others-around-me-feel. This quotation from the book is exactly what I am talking about,

“On our own we simply don't know how to get things done the same way you do things. But, like everyone else, we want to do the best we possibly can. When we sense you've given up on us, it makes us feel miserable. So please keep helping us, through to the end.”

Read more about this book and explore other quotations by Naoki on Goodreads.

Mixed in throughout this book are stories that Naoki writes. They read something like fables, or perhaps this reader was looking for a lesson in all of his words. The book takes a thoughtful approach to tough topics by allowing the autistic person to imagine the questions people may have and answering them himself. This is true empowerment. Claiming the questions for themselves before they turn into a hurtful interrogation. Claiming the self is the most powerful thing a person can do. Naoki does this and speaks for thousands of people with autism and folks on the spectrum. Why does he jump? To feel more connected to his body, the world and his sacred existence. Naoki writes, "When I’m jumping, I can feel my body parts really well, too—my bounding legs and my clapping hands—and that makes me feel so, so good.”

His advice for people supporting those on the spectrum includes these sage words. “But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you're denying any value at all that our lives may have--and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people's unhappiness, that's plain unbearable.”

While this paragraph reads as sad, it does give us information so we can change our actions and not cause more harm or hardship to those we love on the spectrum. If you would like to read more about autism, aspergers, and other sensory integration experiences, check out books by Temple Grandin including "The Way I See It" and "The Autistic Brain," Jodi Picoult's, "House Rules," and my next romance read, The Kiss Quotient" by Helen Hoang.

I also found this extraordinarily great list of posted on Twitter by poet Torrin A. Greathouse. 

Honoring the Life and Legacy of Lentil

Editor's Note: Our hearts are heavy after hearing about the passing of Lentil. To keep his legacy alive, CCA will name an Annual Family Retreat and Educational Symposium scholarship for Lentil, so that more children and families can experience the welcoming environment of retreat. We hold Lindsay and Lentil's closest family members in our hearts as we celebrate the life of ambassadog, Lentil Bean. Please enjoy rereading this piece written in 2019 for CCA's 30 year anniversary of "empowering and giving hope to individuals and families affected by facial differences."  

"In my experience, CCAKids represents Community, Compassion and Acceptance.   We aren’t a group of strangers, we are a Family. Through Lentil, I was blessed to find my way to CCAKIDS. Animals love based on hearts not our differences on the outside. They create a non-judgmental bridge between humans and the way life should be lived. Our children can relate to animals because they don't stare, they don't ask questions; they just enjoy the hug.  Little by little, all of us that have experienced this beauty will carry it forward to help change our world one day."

Lindsay K. Condefer
Street Tails Animal Rescue
My Name is Lentil
Mount Laurel Animal Hospital

Lindsay Condefer is an amazing woman no doubt. Before she began her "Chews Kind" activities, she was already active in her community and rescuing animals with Street Tails Animal Rescue in Pennsylvania. Then, along came an adorable French bulldog, Lentil, born with a bilateral cleft lip and palate. Lentil was one in a litter of five pups all born with facial differences. He was the only one to survive.  Lindsay met Lentil in 2013, fell in love, and became his caretaker. The adorable dog and his story - including the intense efforts Lindsay put in to help him thrive - took the media by storm, with thousands of followers joining little Lentil's journey. His viral success offered Lentil and Lindsay a platform. So with the world's attention, they began raising awareness via their blog, My Name is Lentil, and social media nurturing an enormous Facebook and Instagram following with fun photos, uplifting moments, and eventually genuine, authentic connections with families and children across the country. 

One of the most amazing gifts Lindsay has given the craniofacial community is the gift of fundraising. She's raised over $30,000 for CCA Families to attend the Annual Retreat and continues to give back annually. This loyalty and commitment is something we can never repay, but a love for which we are eternally grateful. We selected Lindsay as one of our 30 Stories because she truly changed the trajectory of our organization. By using her visibility to share the spotlight, CCA has been able to grow into new communities and bring along more supporters than we ever could have without them. Lindsay is truly serving to widen the circle of acceptance for our kids. 

Lindsay continues to visit children with facial differences in the Philadelphia area and across the country with organizations like CCA. She has added more "ambassadogs" to her crew, too, with Sprout coming to the CCA Retreat in 2018 (see photo above). When Lindsay is not traveling with Lentil to visit kids, she saves animals as Founder and President of Street Tails Animal Rescue in Philadelphia, PA, and is raising her adorable daughter, Charlie. 

Sunday, January 1, 2023

Moebius Syndrome Awareness Day is Jan. 24th!

Editor's Note: We are thrilled to help support Moebius Syndrome Awareness Day with Many Faces of Moebius, Face Equality International, Changing Faces, and a number of other nonprofits around the world. 'We are the world' is the theme for this month's celebration. Over the last 13 years, the Moebius syndrome community has created a buzz every January to educate the public about this craniofacial difference. We hope you are able to join us in learning more and supporting those with facial differences throughout this month with programming featured on our social media channels and through these other dedicated nonprofits. Explore the links in this press release to learn more. 

The Many Faces Of Moebius Syndrome (manyfacesofmoebiussyndrome.org), the Children’s Craniofacial Association (ccakids.org), Face Equality International (faceequalityinternational.org), and our global partners, join together in announcing the 13th annual Moebius Syndrome Awareness Day which will be celebrated worldwide on Tuesday the 24th of January, 2023.

This event will occur in real-time, celebrated online, as people around the world hold a wide variety of special events in multiple locations to honor the critical significance of those families and friends whose respect, validation, support, honesty, love, and vocal advocacy builds an ever-growing worldwide community for all affected by Moebius syndrome.

Phyllida Swift, CEO of Face Equality International writes –

"Here at Face Equality International, we advocate to end the discrimination and indignity experienced by the global facial difference community.

We often speak to our community about how talking to family and friends about personal experiences can be the hardest audience to open up to. But advocacy starts at home and having a supportive network around you of friends and family, whether from birth or chosen, is vital to thriving in society."

​Erica Klauber, Executive Director of Children's Craniofacial Association writes –

"We recognize our family as our fiercest advocates and first friends. They are on the journey of living with a facial difference along with us, albeit a different journey. CCA seeks to nurture and support the entire family - from the affected individual to the parents, siblings, grandparents, to life partners. We offer support groups, trainings, and networking to build confidence, learn effective mental wellness strategies, and practice positive interactions. Together, we can support one another, empower each other to reach our full potential, and to work to widen the circle of acceptance."

Sandy Goodwick, Educator and individual with Moebius Syndrome writes –

​“Not all families value kindness or support. But all of us do need validation to hold the challenges we experience. When families or communities ignore one another’s challenges, it is as though that pain continues within - as silent screams. In honoring all with Moebius syndrome, we hope to bring healing to those whose families or communities who don’t know how to care. When we feel together, we heal together.”

We look beyond the rarity of Moebius syndrome when we mutually strive to build a kinder world that recognizes the worthiness of all – such as those affected by facial paralysis and other facial differences. When we see beyond each other’s visible differences – (for those of us with Moebius syndrome - of facial paralysis, speech differences, or any of several other related symptoms) – to the souls within, we begin to see and honor one another in their humanity, just like everyone else.

We are a global family - united in recognizing both the progress we have made as well as the hopes we embrace for our future. We honor the diverse journeys we all have taken to find our worthiness while living with Moebius syndrome. And we celebrate on January 24th - the birthday of Professor Paul Julius Moebius (who first described this syndrome in medical literature), because we share an identity through his name – Moebius syndrome.

Moebius syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with complete facial paralysis and can't close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.

The Many Faces of Moebius Syndrome organization is the world's largest all volunteer Moebius syndrome nonprofit. In 2009, we brought the global Moebius syndrome community together one family at a time. In 2011, we founded Moebius Syndrome Awareness Day. Many Faces of Moebius Syndrome continues to support our global community by: 1) Creating awareness about Moebius syndrome. 2) Providing financial support for medical needs. 3) Providing holiday gifts and meals to Moebius' families in need and much more.

Many Faces of Moebius Syndrome could not achieve its goals without the help of the global community. Through your dedication and perseverance to raise awareness worldwide by sharing your stories and lifting each other up, you have become the greatest volunteers of all! Thank you!

To learn more about Moebius syndrome and the Many Faces of Moebius Syndrome organization, please visit our website at www.mfoms.org.

To learn how you can get involved with MSAD 2023 visit our website at www.msad.world.

For more information, please contact Tim Smith, President, at [email protected] To learn more about our global partners visit: https://tinyurl.com/4uzy8dz9

Happy New Year: What are your Affirmations for 2023?

By Kara Jackman 

I was on the phone with my mom and dad yesterday ahead of New Year's eve. They were eating dinner. The phone, I can only imagine, propped up at my spot at the family dinner table. My mom says, "Ahhh we are going to have to write our new year's resolutions tonight." I responded, "I prefer the term affirmations." My father chimes in, "that sounds religious." 

It isn't, far from it. Let me explain. 

I hate New Year's resolutions. I instead wish to affirm at the beginning of every new year. Affirmations are more in line with my belief systems and well they just work better with my commitment phobia.  Let's look at some definitions to better understand what I mean. An affirmation is defined as "emotional support or encouragement," while resolution is "a firm decision to do or not do something." Affirming allows me to be kinder to myself. The idea of encouragement and emotional support seems softer, more hopeful, as we stumble forward into the unknown. Firm decisions are not, as you find yourself in a horrid binary. Great for math, but not for building a life worth living.  

Here is my list of affirmations for 2023...

  • Take up more space! (more readily tell myself and others what I want and need) 
  • Use more product! (go ahead and use more conditioner on my hair, cream on my face, and suds in the shower! Let's be extra!)
  • Write the book (stop talking about it and write some every day)
  • Increase meditative practices 
  • Travel (destinations are top secret at this time) 
  • Spend even more time with family 
  • Eat clean for my immune system, clarity of mind, and gut health (not for weight loss or gain)
Some of these things I already do, which in the world of New Year's affirmations is welcome. Some practices are worth reminding and patting ourselves on the back for doing. Remember the bit about encouragement and emotional support, here it is taking shape in the list above! We must do be kind to ourselves if we hope to share kindness with the world. Other affirmations, I want to take on more fully and consistently like meditative practices and writing. Some are just for fun and a self-esteem boost. Sometimes giving ourselves permission to enjoy the moment more fully by taking up more space or using more product are fun ways to affirm our place here on Earth. 

So what do you want to affirm this year, maybe you are already doing an activity or practice and want to lean into it more. Or maybe you are seeking new ways to create opportunities to honor growth and change in a manner that reflects your humanity. Share with me what you want to affirm in 2023.