accessibility

  • Finding a faith community that fits

    When I started Joyful, Brave and Awesome, I said this blog would not be a place to discuss religious views, except for when related to the blog’s central message of inclusion.

    Well, over the past year our family has made some changes in how we practice our faith, and I wanted to share our experience with you.

    My husband and I were raised in and educated by the Catholic Church. We met while attending the same Catholic high school, were married in the Church, and baptized our son in the Church. Over the past several years, something shifted, though. I came to a point where the ever-increasing list of things I disagreed with was far too burdensome to make me want to practice my faith anymore. My husband felt similarly, and we discussed switching to a different denomination, but never actually followed through with it.

    As JB’s disabilities became more apparent and we learned more about his genetic syndrome, we struggled with how to give our son a faith community like the one we we grew up with – attending worship services, learning prayers, having traditions – while staying true to our beliefs.

    We tell JB every day that his differences don’t make him any less worthy of respect or love. He can achieve anything – pursue a career, fall in love and get married, raise a family, participate in social events, etc. Just because he was born a little different than other people doesn’t mean he is not enough, or is inherently wrong or bad. How could we justify telling JB these reassuring messages, while at the same time belonging to a group that limits people’s rights simply because of how they were born?

    I knew that if we wanted to lead by example and teach my son to have faith and believe in a higher power, my husband and I needed to make a change. As one person astutely pointed out, we were looking for a church that “preached what we practiced.”

    One of the good things about the pandemic was it caused churches to livestream their worship services. Our family was able to “attend” different Sunday services without worrying about when to sit, stand, kneel, sing, pray, etc. We also didn’t need to worry if JB had a meltdown, or if his feeding pump alarm went off, or if the building was wheelchair accessible. We ended up finding a local parish in a different denomination that is a much better fit for our family. This group has welcomed us with open arms, and has gone out of their way to make sure services and special events are accessible and accommodating for JB.

    I realize no church or religious family is perfect, and JB – like any other kid – will face hardship throughout his life regardless of his religious affiliation. But I also know that, as his mom, it is my job to provide him with a safe environment that fosters confidence, compassion, and tolerance.

    Recently, I have connected with an online community of writers and readers who believe in the importance of inclusion in faith-based writing. I am so excited by the work these group members are doing! As part of this group, over the next few weeks I will be sharing information about a new children’s book called What is God Like? that illustrates the themes of faith and inclusion in one of the most beautiful ways I’ve ever seen.

    You can see a preview of the book here.

    I’d love to hear if you have positive stories of inclusion and faith, whether disability-related or not. I’m also curious if you have any stories of changing your religious practices during the pandemic. Feel free to share in the comments!

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  • Acknowledging what we’ve lost this past year

    I know it’s been quiet around here the past two months.

    I’ve had a million article ideas buzzing around in my mind, including:

    • A Dose of Awesome focused on recent TV/movie reboots I’m loving;
    • Post-vaccine life so far;
    • My husband and my decision to leave the Catholic Church;
    • JB is learning to ride a tricycle!

    I’m still going to address some of these topics in the coming weeks, but today I’m going to discuss something no one wants to have to talk about – grief. (It’s not very joyful, brave or awesome, but whatever.)

    My grandmother passed away two weeks ago. It’s still not sinking in yet; I told my husband it feels like I’m in a foggy alternate universe. I’ve spent the past few days going through the motions, but feeling completely exhausted and emotionally drained.

    I’ve inherited a lot from my grandmother – my eyes, my love of Nutella and Italian cheeses (not together, as that would be disgusting), my love of libraries and reading, and my impatience and inability to keep opinions to myself! I hope I’ve also inherited her strong will and sheer determination.

    For some weird reason, I usually don’t cry at funerals. Rather, I’m exactly like Robin Scherbatsky in How I Met Your Mother, with wisecracks and a Mary Poppins-esque purse full of vices, ready to help comfort others. (I cannot find a clip of this scene of the HIMYM episode Last Words but trust me, it is wonderful.) At my grandmother’s funeral, however, I couldn’t stop crying. I was upset because my grandmother was gone, yes, but it was more than that. I was grieving many things from the past year:

    • I hadn’t seen most of my family (my grandmother, cousins, aunts and uncles, etc.) since Christmas 2019, and I was upset this was how we were reunited.
    • I was bitter about how much has been taken from us  – all because world leaders were reckless and incompetent and didn’t take the pandemic seriously during the first days of its spreading.
    • I hated how much the pandemic has messed with my mental health. Sometimes I tell myself I don’t have the “right” to be depressed or anxious anymore because everyone else is, too. This just makes the distorted thoughts and negative thinking spiral further and further out of control.
    • I worried that JB would be forever scarred because he’s already attended two funerals in his four years.
    • I was infuriated – that between pews being “roped off” for social-distancing requirements and the layout of the church, we had to position JB’s wheelchair right near the casket.
    • I panicked about the millions of “what-ifs” regarding my son possibly catching COVID while inside the church.  I was so scared in fact, I had my husband leave with JB halfway through the service. Would this be my new normal, constantly anxious and vigilant that until JB is vaccinated, every person out there is a possible threat?

    It has taken me a week to write this post because I feel guilty complaining about these things when I know so many people in this world have faced far more over the past year. More than half a million lives have been lost in the U.S. alone due to COVID-19, and each of those people leaves behind people mourning their loss.

    If you – like me – are feeling overwhelmed by what you can do to help people get through a second year of this pandemic, I encourage you to view this list of donation opportunities from CNN. Sometimes, I feel like looking outside myself and helping others is the best way to help alleviate my own grief, as cheesy as that sounds.

    As Michael Gary Scott, the wise former Dunder Mifflin Regional Manager, Scranton Branch, once so eloquently put it:

    Society teaches us that having feelings and crying is bad and wrong. Well, that’s baloney, because grief isn’t wrong. There’s such a thing as good grief. Just ask Charlie Brown.

    What have you been grieving lately, COVID-related or otherwise?

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  • The seaweed is always greener

    We’ve been somewhat strategic about the children’s TV shows JB watches. Don’t get me wrong, I don’t have any problems with screen time; I just don’t want him knowing who Caillou or Peppa Pig is, out of fear that he’ll start wanting to watch them and I’ll have to listen to them. Better to stick with nostalgic favorites: Muppet Babies, Mister Rogers’s Neighborhood, and Sesame Street. (Some may call this selfish, but I call it self-preservation.) There’s one newer show, however, that JB can’t get enough of – Splash and Bubbles – and as a result, he’s completely, utterly fascinated with ocean life. Latching on to his love of all things underwater, our family recently took a day trip to Boston’s New England Aquarium.

    Before heading to the aquarium, we did a bit of research about what to expect. Is the aquarium handicapped accessible? Could we bring his stroller and feeding pump? Would there be quiet places to take a break if JB was getting overstimulated? The answer to all of these questions, luckily, was a resounding yes! I cannot emphasize enough how impressed I was by the New England Aquarium’s attention to detail regarding accessibility and inclusion.

    When we arrived, we were able to borrow a free sensory kit from KultureCity, filled with fidget toys, noise-cancelling headphones, some picture communication cards, and other helpful items. We didn’t end up using the kit, but knowing it was there if we needed it was a huge relief.

    Regarding wheelchair accessibility, I was pleasantly surprised by how much JB could see and experience from his seat. Many parks and museums have guardrails placed right at JB’s eye level, making it hard for him to see or interact with the attraction. The focal point of the New England aquarium, however, is a central tank extending four floors tall, with floor to ceiling viewing windows, and a ramp spiraling around it. As a result, you can see the animals (and occasional scuba divers) from almost any angle. Even better, JB was able to get very close to the glass, immersing him in the experience.

    In one of my favorite moments of the entire visit, a sea turtle swam right up to the glass, and JB started smiling and waving. JB then began making a “muh-muh-muh” sound and signing “more, more, more!” It was an interaction I’ll never forget.

    (I could make some type of joke about how this turtle helped JB come out of his shell, but I’m too mature for that kind of nonsense.)

    JB had another memorable animal encounter at the Edge of the Sea Touch Tank. An aquarium guide, seeing JB in his wheelchair unable to reach the tank, brought a hermit crab in a small container over to him, so JB would be able to see and touch the crab like the other visitors. It was probably just a small moment for the employee, but this inclusion meant the world to us, and to JB.

    Before we left the aquarium, we obviously had to visit the gift shop. (I’m a firm believer that it isn’t an actual museum/zoo/aquarium/theme park visit unless you visit the gift shop.)

    “We are not buying him another toy today, no matter what,” I vowed all morning, citing the mountains of toys already taking over our home.

    My husband and sister both smiled, knowing I would never actually uphold this promise. Sure enough, we ended our visit with a brand-new “wildlife rescue kit,” basically a doctor’s kit and a stuffed animal (JB chose a sea lion) inside a cute little pet carrier. I have to admit, though, it was a smart purchase – he plays with it almost every day. So look out, we may have a future veterinarian on our hands!

    Joyfully recommended…

    One way we’ve been encouraging JB’s “under the sea” interest is through picture books. Here are some of our family’s favorites:

    • An Anthology of Intriguing Animals: This book ticks off boxes for everyone in our home. Gorgeous book design inside and out (for me)? Check! Interesting animal facts (for my science teacher husband)? Check! Cool photos of animals both underwater and on land (for JB)? Check!
    • Manfish: If you had told me pre-parenthood that one day I’d list a biography of Jacques Cousteau as one of my favorite children’s books, I would have called you crazy. But this book is so breathtakingly beautiful, I would willingly hang up the pages as artwork around my home.
    • Three Little Words: Imagine the adorable, uplifting “just keep swimming” spirit of Finding Nemo and Finding Dory, combined with soothing watercolor illustrations of the beloved Pixar fish. Three Little Words will brighten your day no matter how bad the world may seem. 

    (There are Amazon affiliate links in the above post. As an Amazon Associate, I earn from qualifying purchases.)

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  • I refuse to use wheel puns in this title

    After months and months of conference calls with doctors, meetings with therapists and the medical supply company, and repeated fights with insurance companies, JB finally has his wheelchair!

    When I heard the word “wheelchair” first mentioned a year and a half ago by JB’s team of therapists, I burst into tears.

    Carrying an infant or toddler around is normal. But a wheelchair? Isn’t that resigning ourselves to the fact that he may continue being delayed in the long term? Put bluntly: Does getting him a wheelchair mean he’ll never walk?

    The answer is NO! JB just needs some assistance, as he’s gaining weight (hooray!) and growing taller. Soon I won’t be able to carry him everywhere, despite my bodybuilder-like physique and my intense arm workouts lifting Oreos from my plate to my milk glass to my mouth. A traditional stroller doesn’t have the head, neck and trunk support JB requires when sitting for long periods of time, such as when we go to a museum or park. (We still use an umbrella stroller for quick errands, however.) As he grows and gets stronger, we will be able to adjust the equipment, giving him the opportunity to rely less on the chair so he can eventually support himself.

    The wheelchair may even help him grow stronger and develop more quickly. With less focus on trying to stay upright, JB can instead work on other therapies – vision, speech, feeding, etc. I noticed a big difference even the first time he used it at the library for a therapy session. The chair took care of his positioning, leaving him to focus on his books and toys on his tray!

    Kids do not necessarily start out with a tricked-out power wheelchair with all the bells and whistles. Nor do they start with what many would even consider a wheelchair. In JB’s case, it’s more of a stroller – technically an “adaptive stroller”. You may not even realize it’s a wheelchair, since its brightly colored seat, black base and canopy look like any other stroller. (The above photo is a closeup of one of the front wheels of the base.) It even folds up and fits in the back of our SUV. This is good, because I can’t even parallel park a sedan; It would be a disaster if I tried driving a van.

    Whether JB uses a wheelchair for only a few years or for the foreseeable future, we want JB to know lots of other kids out there also use special equipment to get around. In a future post, I’ll be sharing some of our family’s favorite fictional characters with physical disabilities. In the meantime, feel free to comment with any questions you may have about JB’s new wheelchair.

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