April is Autism Awareness Month! Review and #Giveaway for Sensory-Friendly Masks from Easterseals SoCal and Rafi Nova!

Easterseals Southern California Partners with Rafi Nova to Offer Mask Designed With Sensory Sensitivities in Mind

 Sensory-Friendly Face Coverings Available Feb. 8; Portion of Proceeds Benefits Easterseals

 

April is Autism Awareness Month;

Donation With Purchase to Easterseals With Code: ESSC

 

LOS ANGELES — Easterseals Southern California (ESSC), a leading provider of disabilities services, has teamed with socially conscious lifestyle brand Rafi Nova, pioneer of the clear Smile Face Mask, to develop a Sensory-Friendly Mask, available Feb. 8, to benefit children and adults with autism, other disabilities, or anyone who finds wearing a conventional mask uncomfortable.

 

For individuals with autism and other sensory processing challenges or disabilities, mask wearing can be difficult. A face covering introduces multiple new stimuli, including the fabric's sensation, the pressure of tight elastic bands, and the heat and moisture from breath inside the mask.

  

According to the CDC, about one-in-54 children has been identified with Autism Spectrum Disorder (ASD). About one-in-six children aged 3–17 years (17%) were diagnosed with a developmental disability as reported by parents, during a study period of 2009-2017, including autism, attention-deficit/hyperactivity disorder, blindness and cerebral palsy, among others. Per the Autism Society, ASD is the fastest growing developmental disorder in the U.S. with 3.5 million+ individuals on the spectrum. In the U.S.; 500,000 autistic individuals are transitioning to adulthood.

 

The premier New England mask maker partnered with ESSC to design a mask with reduced stimuli to address the concerns of people with sensory sensitivities. They consulted with more than a dozen of Easterseals’ therapists, other licensed and certified staff, those working with people who receive services from ESSC, as well as their families and other community members. Over a three-month period, multiple prototypes were tested and revised to achieve a maximally beneficial mask—soft, structured, safe, secure—that provides both comfort and function.

 

Commented Dr. Paula Pompa-Craven, Psy.D., ESSC’s Chief Clinical Officer, “There’s little in the marketplace to accommodate people with sensory sensitivities. This soft mask is an outstanding option not only for the autism community, but for all children and adults who I believe will find it uniquely comfortable.”

 

The Sensory-Friendly Mask retails for $14 (child sizes) and $16 (adults). Available in light blue, light pink, hunter green, black and “Over the Moon” (kids sizes only) at: https://rafinova.com/products/sensory-friendly-mask?_pos=1&_sid=402344580&_ss=r

 

A portion of each purchase will be donated to Easterseals Southern California when you use code: ESSC

 

Features of the Mask Include:

• Softness:  100% Mulberry silk lining reduces friction and adjustable jersey knit straps clasp behind the head instead of pinching the ears.
• Structured:  Minimal design and limited seaming. 
• Secure:  Adjustable nose bridge ensures the perfect fit and decreases glasses fogging. 
• Safe:  Special construction lifts the mask off the mouth and highly breathable cotton is used on the exterior.
• Durability: The mask has an antibacterial layer and is reusable and machine washable
•  Ease:  A clasp on the back ensures ease of putting on and removing. When not on the face, the mask may safely remain on the person and not be lost thanks to an extra strap feature that fastens it behind the neck. 
• Social Story:  Comes with a visual storytelling designed by therapists that helps children understand mask-wearing necessity.  

"Masks must be comfortable and functional for everyone. It's that simple," said Rafi Nova CEO Marissa Goldstein. Earlier this year, the company pioneered transparent masks with their Smile Mask launch to restore visual cues to masked communication. In partnership with ESSC, the Sensory-Friendly Mask represents the next generation of the company's inclusive face coverings designed to protect and reconnect communities.

 

About Rafi Nova:

Rafi Nova is a socially conscious lifestyle brand on a mission to outfit families with products and accessories designed for everyday adventures while empowering them to connect, have fun and do more good in the world. Founded as a fair-trade fashion brand to equip adventurous families with sustainably made travel bags, the company shifted focus to face masks to solve the urgent needs of families and communities. Veterans of sustainable product manufacturing, Co-founders Marissa and Adam Goldstein named the company after their two sets of twins and travel partners: Raya, Efi, Noa and Eyva.

 

About Easterseals:

For more than 100 years, Easterseals has been an indispensable resource for people with disabilities and their families. Each year more than 1.5 million people benefit from Easterseals services across a network of affiliates in communities nationwide. Easterseals makes profound and positive differences in people's lives every day, helping them address life’s challenges and achieve personal goals so that they can live, learn, work and play in our communities. 

 

Easterseals Southern California (ESSC), the largest affiliate of the national Easterseals organization, provides services in Los Angeles, Orange, San Diego, Imperial, Kern, San Bernardino, Riverside and Ventura counties. With nearly 3,000 employees, 60+ service sites and hundreds of community partnership locations, each year ESSC assists more than 13,000 people, providing adult/senior day services; autism therapy; child development/early education; employment services; veteran employment support; independent living options; and more.

 

For more information, visit: https://www.easterseals.com/southerncal

My Thoughts:  

When I heard about Easterseals and Rafi Nova teaming up to make a sensory-friendly mask I was thrilled! Being a supporter of Autism Awareness, as well as having a younger brother with autism, hearing about these masks made me so incredibly happy. With the stress of the pandemic upon us, the reality is that many with sensory sensitivities are having a difficult time handling the need to bundle up and wear masks. Not all masks are created equal. Some are very bulky. tight, and uncomfortable. Rafi Nova has been making many great and comfortable designs, so I knew that them teaming up with Easterseals would be a great venture! 

When I received my pack of masks, the first thing I noticed was the plush texture. You could tell they were made with love as well as care to detail. My other favorite aspects of the mask is the clasp on the back and the adjustment ability. When I placed it on my brother, it was easy to fit to his face. We both tested out the masks and found that breathing was much easier in them than traditional masks. It felt like a nice cushion on our faces that was not restrictive. I myself have asthma so I appreciated that a lot! The masks were easy to wear while out and their designs are stylish too! 

These masks are such a wonderful creation for those with autism, sensory sensitivities, as well as those looking for a more comfortable fitting mask. Easterseals and Rafi Nova went above and beyond with these. They are made with care, incredibly soft, and durable. You'll feel it right when you put them on. I highly recommend these masks!

The Giveaway: 

Easterseals and Rafi Nova were kind enough to off a giveaway in honor of Autism Awareness Month! One lucky reader will win a pack of masks. I know you all are going to love them as much as my brother and I do! Make sure to use the hashtag #SensoryFriendlyMask if you post on social media! Thank you so much to our sponsors for this opportunity!

Entry-Form

Connect with Easterseals SoCal: 

Website Facebook Twitter Youtube

Connect with Rafi Nova:

Website Facebook Instagram Twitter

Why I’m Going to #LightItUpBlue for Understanding and Acceptance

Since April is World Autism Month, I’ve decided to #LightItUpBlue with Autism Speaks to increase understanding and awareness of autism. This is an issue that has touched the hearts of many people I care about. It’s highly likely that you know someone with autism too since the CDC estimates autism’s prevalence as 1 in every 68 children in the United States.

Autism refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.

Autism’s most obvious signs tend to appear between 2 and 3 years of age. In some cases, it can be diagnosed as early as 18 months. Autism Speaks encourages parents with concerns to seek evaluation without delay, as early intervention can improve outcomes.

The “Light It Up Blue” campaign is about more than awareness -- it is about increasing understanding and acceptance of autism.  This includes advocacy and support for people across the entire spectrum throughout their lives. It also includes advancing research into personalized treatments for autism and related conditions.  I encourage you test your understanding of autism by taking this quiz!

Certain medical and mental health issues frequently accompany autism. They include GI disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety and phobias.

You can help make a difference too by taking the Light It Up Blue Quiz to see how much you know about autism. If you’re moved to do so after visiting AutismSpeaks.org, please show your support for and understanding of the challenges faced by individuals with autism by sharing a photo to #LightItUpBlue for Autism Awareness Month too. Also, check out Autism Speaks’ nationwide calendar of autism-friendly friendly events and activities in April.

Book Review: Learning to Kiss by Eve E. Megargel

The Triumphant Journey of a Nonverbal Autistic Child into an Adult With An Ability To Communicate That Knows No Bounds

Eve Megargel is a true hero. She is the author of the new memoir Learning to Kiss (Infinity, May 17, 2016) and the mother of a 25 year old man, Billy, who is nonverbal, has severe autism and suffers from a litany of medical issues. Learning to Kiss is a raw and honest account of Eve’s life with Billy as they struggle to identify successful modes of communication he can use in everyday life. 

Eve is dedicated to helping transform the image of people who have autism and nonverbal or limited verbal abilities. Her memoir is a testament to the fact that even if a person cannot communicate with spoken language, they still have the ability to share and learn and live a productive, happy life.

Eve and her husband, Matt, were told to institutionalize Billy when he was two. They refused and began a program, Voicecolors, that has helped him and other autistic individuals with limited verbal skills learn to express themselves and achieve meaningful social connections. When we consider those with limited speech as thinking, complex individuals, they can contribute to society in astonishing ways.

Billy first started to express himself through paintings and has grown into an amazing artist, talented gymnast, and yogi. Today, Billy’s work is in a number of galleries and installed at Massachusetts General Hospital’s Lurie Center for Autism. Billy uses an electronic device to “speak.” He also uses other means of non-verbal communication that allow him to fully participate in his life.

One of the biggest issues autistic individuals and their parents or caregivers face is communicating with medical staff. Beginning in his teens, Billy often visited hospitals for testing and medical procedures. There, the staff prohibited Billy’s parents from accompanying him beyond the waiting room, despite their insistence. As a result, Billy became angry and ripped the IV out of his arm. He refused to cooperate simply because he didn’t understand what was going on and was not provided with a way to communicate that was right for him. Often, those who are nonverbal, or have low verbal ability are never given a chance to make their own decisions about healthcare, or anything else. Driven by these experiences, even among compassionate medical professionals, Eve created a questionnaire to be given to autistic patients during hospital admission, which has improved communication between medical staff and autistic patients.

April is Autism Awareness Month and this year’s campaign is not only dedicated to awareness, but also to encourage the general public to accept and recognize the potential, instead of the deficits, of those on the spectrum.

About the Author

Eve Megargel is an author, educator, filmmaker, and pioneer in advocating that all individuals on the autism spectrum are independent communicators who are capable of self-expression and social relationships. Eve consults, collaborates, and engages on key autism issues and initiatives with several organizations, including Massachusetts General Hospital and Boston’s Jewish Family and Children’s Services. She is a member of the MGH Family Advisory Council and the Lurie Center Leadership Council. Eve received her master’s degree in Theology from Harvard University, and her bachelor’s degree from the University of North Carolina – Chapel Hill. She lives with her husband Matt and son Billy in Weston, Massachusetts.

VoiceColors Communication Resource Model

The Voice Colors® educational mission is to provide people on the autism spectrum opportunities to learn, develop and cultivate independent self expression grounded in social relationships. As a communication resource model, Voice Colors® provides parents, educators and service providers comprehensive information about how to establish, develop and refine communication systems or methods of instruction that will enhance the individual’s present and future social interactions and thus life experiences.

Purchase Learning to Kiss at buybooksontheweb.com. 

Visit Eve at evemegargel.com, and check out VoiceColors on Twitter, Vimeo, and Facebook.

Our Thoughts
I was interested in this book from the get-go since we have a non-verbal child with autism; we've faced many of the same struggles as Billy although our son is not on the severe end of the spectrum.

Learning to Kiss is a collection of memories; both struggles and triumphs as Billy and his family navigate the uncharted world of autism and the complex medical issues that can come with it.  Not surprisingly, the modern medical field is still currently not well equipped to treat individuals with autism - not just because the medical issues can be so misunderstood, but because hospital staff often simply do not know how to handle the situation or communicate with the patient.  Many individuals like Billy have routines they must follow in order to get the task (whatever it may be) accomplished.  Hospitals have policies and don't always allow patients to break those policies depending on their individual needs. And then to add the non-verbal element on top of it all - without their communication systems, they have NO voice, a struggle we personally know all too well. 

People (sadly, some therapists and doctors included!) assume that because one cannot communicate verbally or with sign language, that one has nothing TO communicate, which is the biggest mistake of all! One of the memories that particularly stuck out at me was from the chapter "Wake Up Call" where the coordinator for special education says "Bill needs to learn to comply." and Eve answers it with "No, Billy needs to learn to communicate."  This, right here, has been an integral part of our struggle.  It was only finally understood when I fought for, and received, the label of Autism when he was 4; he was then given therapy services that would not have been offered until he was much older. He also has Down Syndrome, and I was told by the school they do not offer speech therapy services for Down Syndrome unless the child is not speaking by age 6 - 7, which frustrated me beyond belief!  I can only hope that their experience with our son has changed their mindset about childhood communication.

Back to the medical part - while our son does have health issues, thankfully they are manageable at home with strict diet and TNI (Targeted Nutrition Intervention) and he is under the care of a wonderful osteopath.  If we were to have a hospital visit, there is NO WAY we could let the medical staff separate us from our son because he doesn't yet have a reliable means of communication.  How could he possibly answer any questions or tell them anything?  If they ask what's wrong or what hurts, he cannot answer yet. With motor apraxia, he may not be able to perform any tasks they ask him to do.  Like Billy, our son is completely non-verbal, and with motor apraxia he is also mostly unable to sign.  We have been working with a speech device; it is still a work in progress and will be for quite some time yet - but he can sure say a whole lot more on his speech device than the few words he can sign.  Eve has created a questionnaire to be given to autistic individuals (and their caregivers) at hospitals so the medical staff can understand their specific needs.  I don't know if this questionnaire is widely available at hospitals & clinics across the US, but it SHOULD be!  We as patients and caregivers of patients, need to start asking for this questionnaire to get the ball rolling.

Eve also touches on that there are no "Autism specialists".  The medical conditions that can arise with autism can be so complex and so unique at the same time.  Doctors have yet to understand what behaviors are driven by what, and whether they are connected to a correctable medical issue or not. 

Learning to Kiss is a riveting read; a window into the both complex and vibrant life of Billy and well worth the read.