Tuesday, February 23, 2021

Masks For All: Functional, Accessible, and Fun

Editor's Note: Previous blog posts about accessible masks for people in the craniofacial community can be found here and here. I hope this information is helpful in finding the right fit for you.

Masks are now a part of our lives amidst the COVID-19 pandemic. Experts say they could be here to stay through mid-2022.  In addition to keeping us safe from COVID-19, they also reduce transmission of the flu, too. For those in the craniofacial community, masks could be an effective tool for those of us that are medically complex and need that extra layer of protection. Unfortunately, masks are not one size fits all. Accessibility and comfort for those with craniofacial conditions varies from body to body. What are we to do? 

After weeks of crowdsourcing, purchasing, and testing, I have some answers that will benefit us. This writer will go to the ends of the Earth to find a mask that is the least disruptive to my compromised cabeza, and that avoids my tiny ears complete with tiny hearing aids. 

Mandala Scrubs Masks

Leader in the clubhouse for me has been Mandala Scrubs Adjustable Head Loop Mask. Light weight, comfortable, and easily comes on and off the head. It avoids anchoring on the neck and the ears which allows me to comfortably keep my hearing aids in place, and wear my now signature, big, fancy earrings again. The fit is the best yet, with an adjustable nose ridge to create a solid seal that doesn’t push the air out and up into my glasses. Masks come in adult and child/petite sizes. The best fit for me is the petite. The mask does not yank on my ears and pull my arthritic jaw forwards and down. They have a PM2.5 filter pocket, too. Wonderful stuff and worth every cent of the $9.99. Another company that does this style of mask well is Proper Cloth. They have multiple size options, but are a bit on the pricey side at $25. You do get what you pay for, and the quality appears exceptional. Thank you to a designer friend who shared these modern stylish masks with me. 

Proper Cloth Mask

In second place, the Athleta Activate masks. Yes, these are of the ear loop variety, but we will forgive them for it, because each three pack comes with a black band with two hooks that you can wrap around the ear loops, and then place behind the head or in my case above my messy bun. I even played a full singles tennis match in these athletic masks and won!  Athleta masks come in adult and kids sizes. The fabric is spandex, yoga pants material. Very comfortable, and flexible. Buy a three-pack in the adult size for $30 or just $25 for the kids size. The site has 20% discounts galore. 
Athleta Mask with Band

After a frustratingly long week in the library (my day job) at the beginning of the month, I reached out to Facebook for that aforementioned crowdsourcing. People came out in droves after I told my tale of woe that cold night. Thank you to all who commented on that post. Sing it with me, you are the “wind beneath my wings.”
Direct from the hive mind, I share with you these great tips. First things first, this amazing contraption from Amazon takes the ears out of the equation completely. The mask extender is made of flexible plastic meant to be worn at the back of the head. You can purchase 5 of them for $7.99. These are great to have on hand if you have a medical appointment or a hospital visit. Many medical offices and hospitals require that you wear their mask while in the building. I keep one of these in my backpack at all times. 
Flexible Mask Extender

If you like headbands, grab one of these with two buttons to anchor the mask in place. They cost about $11. 
Headband with Button Anchor

The “sew awesome” among us may like this pattern developed by Scraptastic Patchwork. Former board member, and CCA Mom, Paula Guzzo, found this crafty couple for us. Scraptastic Patchwork shows us how to make accessible masks from upcycled fabric. People with beards, arthritis, craniofacial conditions, and more are rejoicing over their work. The two videos posted by Scraptastic Patchwork, and the patterns for these masks, can be found on Youtube. Click here and here to see their process and progress in creating masks for all bodies. This is universal design, folks!

I hope you enjoyed this post about mask options for all bodies. One of the above options should help alleviate the additional pressure on the head, neck, and ears that can be extraordinarily aggravating for those of us with a number of traumatic surgeries to the head, neck, and upper body under our belt. My hope is that you find one that feels best for you and your body

Best of luck. Stay safe, protect others, and spread compassion not germs!

Monday, February 8, 2021

Real Food Blends Announces Paula Guzzo As Brian Liebenow Award Winner

Editor's Note: In honor of Feeding Tube Awareness week, we are excited to share that Real Food Blends awarded former Board CCA Board Member and CCA Mom, Paula Guzzo, as the winner of the third annual Brian Liebenow Award. Real Food Blends will donate $500 in honor of Paula and the whole Guzzo clan. Thank you, Real Food Blends, and to the Guzzos for choosing CCA to be the recipient of the donated funds. Below is the text of the email message Real Blends sent to its email newsletter, and links to press release, video, links to the social media posts created by Real Food Blends about the award and celebration of this great family. 

For all those out there in our community that utilize feeding tubes, we see you, and celebrate raising awareness with you this week.

We're so proud to announce the recipient of our 3rd annual Brian Liebenow Award, which recognizes an extraordinary member of the feeding tube community each year during Feeding Tube Awareness Week. Paula Guzzo is a mom, wife, and dedicated advocate who has spent a lifetime working for families with special needs. She has been a supporter of real food for people with feeding tubes longer than almost anyone we know -- she's blended for her son, Scott, since the late 1980s and has used Real Food Blends for the past 5 years. She's also an incredible advocate for special needs education, turning her work to make sure Scott had the resources he needed in school to advocating for special needs families on a local, state, and national level. Learn more about Paula in the video above.

In addition to sharing Paula's story, we'll be celebrating Feeding Tube Awareness Week with daily posts on Facebook and Instagram about the power of real food for people with feeding tubes. Join in on the celebration by liking and sharing and help us spread the word that EVERYONE deserves easy access to real food!

Press Release http://www.prweb.com/releases/real_food_blends_announces_3rd_annual_brian_liebenow_award_recipient_to_kick_off_feeding_tube_awareness_week/prweb17713620.htm

Monday, February 1, 2021

My Vision For The World, and How You Can Help

By Christine Clinton

When I was growing up, I didn’t at first realize I was different in any way. I had countless doctor appointments, and countless surgical procedures; but I always thought that was the norm. I had to go to a special school the first five years of my life, because the school my sister was attending, decided they could not accept me as a student. The principal of the school that my sister was attending told my parents that, “if I accepted Christine into this school, I would have to accept other children like her.” I will admit, those words still sting to this day.

So, because of that principal’s decision, I went to a special school. My parents were persistent, though. When I was going into the fifth grade, they were able to fight to get me out of the special school, and mainstreamed into my sister’s school.

I was elated, because I felt like I was going to have a sense of normalcy. I thought that being around other children who didn’t have the same adversities and limitations that I did would help broaden my horizons, and eventually, add to my maturity and growth. Being in the fifth grade at my sister’s school was absolutely wonderful. Everyone absolutely loved me – from the other students in the class, to the teacher. I felt unconditionally accepted and loved. Nothing felt like it was fake or strained; it was just beautiful.

Unfortunately, due to not being properly taught in the special school, I had to be put back into the fourth grade to learn some things I’d missed along the way. The last day of my time in the fifth grade was a very tearful one, and I still remember to this day. I hated leaving the caring, accepting, compassionate class that was so full of gentleness, kindness, and unconditional love. While I don’t remember the names of every single person in that fifth-grade class, I will forever carry the memory of that special group very deep in my heart.

Going back into the fourth grade was starkly different than being in the fifth grade. The respect and dignity I experienced in the fifth grade evaporated instantly. As soon as I entered the fourth-grade room, I was bullied. One girl’s unwillingness to accept the way I looked on the outside, led her to tell everyone else in the class to avoid me. I only had two friends in the fourth-grade class: my best friend whom I have known for almost 34 ½ years, and my sister.

I was called every name under the sun; most I don’t want to repeat, but I urge all of you to never use the word “retard.” It is like a weapon that still cuts me when I hear it.

Those days at school were horrible and hurtful. No one should ever have to be subjected to that kind of cruelty or unkindness, no matter how they look. The bullying, unfortunately, didn’t stop once ignited. It seemed that nothing could overcome the raging fire that one girl started. Thus, the bullying continued all the way into the eighth grade.

Sadly, I was hopeful (or maybe foolish) to think that things would get better when I went into high school, but no; things were the same… if not worse. It seemed I could not escape the stigma she had put on me – a stigma that up until that point, I had not felt on myself.

It wasn’t until my college years, when a very kind security guard told a bully who I encountered in college to “leave me alone.” He intervened and announced “I was under his protection.”

My plea to you reading this, is to understand that one unaccepting person can create a trend that long outlasts her effort. It was not until an “upstander” – the security guard – intervened, that things changed. You see, you have the power to start a negative or positive trend. Who do you want to be? The fourth-grade bully? Or the security guard hero?

Even as an adult, there are instances where I have been bullied. This time though, the bullying isn’t just because of how I look. It also encompasses my emotions, opinions, and feelings on different things.

We all have our own emotions and feelings, and differences of opinion. These differences are absolutely healthy! It is natural to have different viewpoints.

What is never okay, is to make others feel like only someone else’s viewpoints matter, and how they feel doesn’t count. That is simply not right. We all deserve grace, and the opportunity to express how we feel, as long as it isn’t in a cruel, derogatory, or unkind way.

No one ever deserves to be bullied. How truly boring our world would be if we were all the same, if we all acted the same, looked the same, and had the same ideals and viewpoints? We are all different, and we all deserve the very same dignity and respect no matter how we look.

My wish is that no one is ever bullied. I wish we could all look past the exterior shell, and see the heart and soul of a person. I wish we all had the ability to accept one another as we are, instead of what society wants us to be. If we could all just stop categorizing one another, and putting labels on people, what a wonderful world it would truly be.

In closing, I would like to challenge you, Reader, to combat bullying. Combat the hostility that people with craniofacial and physical differences have to face every single day of their lives. If you are with someone, and they are being bullied, stand up for them. Intervene and speak up! Let them know that they are never alone in how they are being treated.

Help them by talking to another trusted family member, or friend, about the bullying incident. Never let the person being bullied be made to feel so alone. Instead of spreading unacceptance, and unkindness, of people who look different, let us instead spread unconditional acceptance and love for all. I promise you, the wonderful feeling you get when you know you have given someone a chance to be your friend is absolutely amazing. It is truly rewarding for a person who is different to know they will always be unconditionally accepted and loved no matter what. You can change the world, if you take on this challenge!