wheelchair

  • 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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  • Demystifying disabilities

    (Please note: This post was written before I knew about author/activist Emily Ladau’s incredible book Demystifying Disability. The similar post title is a complete coincidence. I highly recommend reading her book and following her on social media!)

    A few weeks ago, a college friend reached out to me on Facebook with the sweetest message. She wanted to know if I had any recommendations for how she and her young children should best engage with kids with disabilities in a way that is respectful and supportive.

    First of all, I’d just like to thank this friend, and others who have asked me similar questions. Seriously, though, the fact that parents want their children to know about and celebrate differences is absolutely reassuring to me, as I prepare to send JB off to preschool next month. It gives me hope that kids are becoming more accepting of and comfortable with people not exactly like them.

    As for what to say when meeting someone with a disability, (child or adult), I’m quickly learning everyone is different at what they appreciate or don’t appreciate. But so far, I’ve been amazed by how well my friends and their kids have come to accept and embrace JB!

    It’s funny, but there are two different – and totally appropriate – reactions kids typically have to learning about JB, whether it’s his wheelchair, his feeding tube, his hand and head movements, or his lack of talking:

    1. The kid shrugs and says “Oh,” and moves on to another topic or walks away.
    2. The kid says, “Oh,” and then asks an amazing follow-up question like “Does he drink Magic Formula like Boss Baby?” (In case you were wondering this same question: Yes, JB gets formula, and I guess it’s kind of magic in the fact that it gives him all of his nutrition. No, he doesn’t drink it. And no, fortunately JB – unlike Boss Baby – doesn’t sound like Alec Baldwin!)

    I find my friends and I have the best luck explaining it in the terms of showing what’s different between the children but what also is the same. So if the child asks why JB doesn’t walk, we answer, “His legs aren’t strong enough yet to walk like you do, but he has this cool chair that helps him get around. Isn’t it cool how many ways there are to move and explore?”

    Or if they point to JB’s feeding tube, we’ll say, “That’s how he gets his food in his belly. It’s like how you’re eating your sandwich by mouth and it goes into your stomach. Isn’t it amazing how many ways there are to eat?”

    This way they see what’s different but also what they have in common.

    The main thing is to explain there’s nothing to be afraid of – kids with disabilities are still just that – KIDS. They enjoy dinosaurs, Disney movies, hockey, stickers, iPads and other things just like other children.

    I promised my friend I’d compile a list of some of my favorite children’s picture books that explain disabilities in easy, approachable language. I also thought I’d share this list on the blog, as it is holiday shopping season and people are looking for great gift ideas. Enjoy!

    1. Daniel’s New Friend by Becky Friedman: This story recaps the Daniel Tiger’s Neighborhood episode of the same name. It introduces Chrissie, a new character who uses leg braces and crutches. I love this book and TV episode because they show Daniel and his friends showing curiosity in their friend’s equipment, then moving on to get back to playing. They don’t completely ignore the difference, but rather it’s acknowledged, and then accepted. (Side note: This story is also included in the collection Daniel Tiger’s 5 Minute Stories.)
    2. Just Ask! by Sonia Sotomayor: “Why would a Supreme Court Justice write about kids with disabilities?” I know that was my first thought when I heard about this book. It turns out that Justice Sotomayor had diabetes starting at a young age, but her classmates never asked her questions about it. She wanted children to know that curiosity and questions are good, and that disabilities and chronic health issues can be respected and talked about. There are a variety of disabilities and differences mentioned in this book, such as asthma, blindness, deafness, autism, food allergies and dyslexia. Also, the illustrations are incredibly beautiful.
    3. We’re All Wonders by R.J. Palacio: This book is a spinoff of the New York Times Bestseller Wonder. It follows Auggie, a young boy with facial differences, and his dog, Daisy, as they go on adventures. The message of the entire Wonder collection is to “Choose Kind”, and frankly we could all use that reminder. If you want to hear a sample of We’re All Wonders, check out this video of Luis from Sesame Street reading it aloud.
    4. We’re Different, We’re the Same and We’re Wonderful by Bobbi Jane Kates: This Sesame Street book first published in 1992 discusses differences of all kinds, without ever using words like nationality, race, gender, religion or disability. Are the illustrations a little dated and cheesy? Yup, but that’s part of its charm!

    I’d love to hear your favorite books for helping explain differences – whether disabilities, gender, religion, race, etc. – to children. Feel free to share your recommendations!

    Please note: These opinions are all entirely my own, and I have not been compensated to review any of these books. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

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  • Have JB, will travel: On the road this holiday weekend

    “Twenty bazillion travelers are expected to hit the roads this Thanksgiving weekend, according to the latest report from ZZZ…”

    Back in the day, (the “day” being my 20s), a big part of my job was writing/editing/distributing press releases that started just like this!

    While I no longer work for “ZZZ” (clever pseudonym, I know), I still feel a sense of nostalgia for pre-kid road trips. Back then, our biggest concern was giving the dog his anti-nausea meds before he got in the car.

    Today’s packing list looks a bit different:

    • IV pole for the feeding tube pump? Check.
    • Enough cans of formula for the entire length of the trip, plus extra? Check.
    • Medicines, syringes, bottled water and feeding bags? Check, check, check and check.
    • The actual kid? Check.

    I’m fortunate that most of our family live close by. When we do travel, though, there are several items that are CRUCIAL for making the trip with JB easier. Here are several indispensable products we swear by for traveling with our special needs toddler. Even if you don’t have a child with a feeding tube or wheelchair, I bet they’d be helpful for your little ones, too.

    • Skip Hop insulated bottle bags: I have an unspoken rule that if I see one of these bags on sale, I buy it. No matter what. I LOVE these mini coolers. While meant to keep bottles chilled (with the enclosed ice pack), we use them to store JB’s feeding pump and bag during the day. These bags have a great buckle handle, making it easy to attach to a stroller, car seat, high chair, etc.
    • Skip Hop stroller organizer (no longer available, but see similar model here) : Most strollers come with at least one cupholder for the grownups. Unfortunately, those cupholders are usually plastic and appropriately have giant “No hot beverages!” warnings. Enter this bag. It works with any stroller – including JB’s wheelchair stroller – and includes an insulated cupholder just screaming for me to finally put my latte safely down and free up my hand. Fact: I’m a much better mommy when I have my coffee with me.
    • Columbia diaper bag backpack: This backpack has been with us since we went to the hospital to have Baby JB. Since then, it’s withstood almost three years of JB, including daycare, playgroup, road trips, amusement parks, nature walks, playgrounds, the beach, and more. It’s fantastic: Super durable, tons of storage, and ultra comfortable. The only downside? Several of our friends have the same one because we all keep recommending it to one another!
    • Bright Starts Beaming Buggie: Behold, the little firefly that has made every overnight trip and hospital stay a whole light brighter. This toy seems simple: a cute little plastic bug that plays music and lights up. But it also has a waves/white noise option, which we use to help JB feel more at home wherever we are. It clips on to the pack-and-play or crib with ease, and is much easier to pack than a traditional white noise or music machine.
    • Wildkin nap mat: Consider this a “starter sleeping bag”. JB loves this all-in-one mat, blanket and pillow. It’s easy to roll up and bring when visiting family and friends, and it gives JB a familiar setting for his nap. Apparently it’s pretty comfy, too, considering we have photos of my dad napping next to it at a family function!
    • Blender Bottles: This one goes out to my fellow formula-feeding moms out there. These are the perfect way to mix a day’s worth of formula with minimal dishes to wash! Great for travel or everyday.
    • Car headrest hooks: Someone in a “tubie parent” Facebook group recommended these simple hooks. They are so simple, but so useful! We hang JB’s feeding tube pump bag (see: Skip Hop Bottle Bag above!) from these during car rides. You can also use them to hang car trash bags, headphones, purses, shopping bags, and probably 100 other things I can’t think of right now.

    So far, we’ve only traveled domestically by car on our trips with JB. Air travel and international travel are completely different ball games, from what I’ve read and seen. We’re not that brave yet, but I am hopeful that over the next few years travel will become more accessible to disabled travelers and their caregivers.

    What are your road trip must-haves? I’d love to hear!

    Note: This photo is of our dog, not JB. It obviously was taken while the car was safely parked. We would never allow our dog to stick his head out the window while the car was moving. We also would never leave our dog in a parked car unattended. 

    These opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

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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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  • Standing tall

    Last week I shared a photo in my personal Instagram account of making crafts with JB to distract him during his time in his stander. I received several questions afterward, and realized I never mentioned his stander before on the blog, so I’d like to do that in today’s post.

    As I’ve mentioned before, one effect of JB’s genetic syndrome is hypotonia, or low muscle tone. (Not-so-fun fact: Another phrase for hypotonia is “floppy baby syndrome”, joining my previous least-favorite medical terms of “geriatric pregnancy” and “failure to thrive”.) JB’s muscles don’t provide the resistance a “normal” child’s would. Here’s an awesome demonstration highlighting the differences among typical muscle tone, low tone and high tone.

    JB’s hypotonia has made it difficult for him to learn to sit, crawl, stand or walk. While we are working on these skills piece by piece, it’s also important that he start experiencing some of the benefits of standing throughout the day – specifically so his legs can start bearing weight. This is where the stander comes into play.

    We first applied for JB’s stander back in August when we also applied for his adaptive stroller/wheelchair. His team of therapists and doctors wrote their letters of support for insurance, and we worked with a medical supply company to find the best option for JB’s situation.

    The good news is that by starting him in a stander at such a young age, he’ll get lots of use out of the equipment. It should last him a few years, even if he has several growth spurts!

    The goal is to increase gradually the amount of time he’s in the stander. He started at 15 minutes a day, and now can go up to almost an hour a day, if he’s well rested. It’s hard work, as his body is using parts it never has until now. It helps if we keep him distracted. Luckily, the stander has a tray, so he can play with cars or blocks while in there. His favorite activities are throwing things off the tray and complaining because he wants us to pick them up. He also enjoys watching Sesame Street while in the stander – either on TV or his iPad, although he often just throws the iPad, too.

    In true JB fashion, he quickly (we are talking five minutes in) learned how to wiggle his feet out of the stander, so his sneakers stay strapped in and he can kick and dance. Yes, this defeats the purpose. Yes, he still occasionally tries this maneuver. Luckily, the stander has brakes on it (similar to those on a stroller) to keep it in place when he does this.

    We have already noticed big improvements since getting the stander. His head control, trunk control, legs, and digestive system (which is lined with muscles) are all getting stronger.

    I have found I’m also getting a bit braver since we got the stander. Parents and therapists are responsible for everyday adjustments to the equipment; there’s a giant instruction manual PDF and a tool (that looks like a mix of that IKEA tool and a Swiss army knife on steroids) to make minor adjustments as he grows. I even lengthened the stander the other day, as his legs seem to get longer by the minute, I swear!

    Well, those are the basics of JB’s stander. If you want to help families who can’t afford equipment for their children, here are some organizations doing a lot of good work:

  • 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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