“Can you start a website where you curate all these awesome finds?” my son’s therapist asked me half-jokingly (I think) last year.
As I’ve mentioned before, I often cope with JB’s diagnosis by shopping. I’m always hoping there’s a certain toy or piece of equipment that can help him develop skills a bit more easily, or make this therapy sessions more fun for him.
I am thrilled to announce I am now an affiliate partner of Zulily.com – my favorite online retailer!
Without a doubt, Zulily has been my top source for therapy (whether speech, occupational, physical or feeding therapy) and sensory items for JB. It is also where I’ve found the best selection of toys and books featuring people with disabilities.
In addition, I do most of my holiday shopping – birthdays, Mother’s and Father’s Days, Christmas, Easter – on Zulily. Since the pandemic, I’ve also been doing most of my own clothing shopping on Zulily. (Their shoes and plus-size offerings are especially fantastic.)
See the photo above? Those are all Zulily purchases I was able to grab in a three-minute mad dash through my house. Even the area rug is from Zulily.
Over the next few days, I’m going to be sharing some of my favorite Zulily finds both here on the blog and on social media. I’ll also be sharing suggestions from Jessica N. Turner, one of my favorite bloggers out there and a big career inspiration to me.
Is there anything in particular you are looking to purchase right now that you could use help finding? Let me know!
Please note: I know I sound like I’m doing an infomercial for Zulily, but this is not a sponsored post. If you buy something through the affiliate links used in this post, I may be compensated, but other than that, I’m just an [over]eager fan who loves a good sale.
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!
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.)
Yes, I know this post’s title is somewhat of a tongue twister. That’s intentional, because a huge part of feeding therapy is working that tongue!
In today’s post, I’m focusing on JB’s feeding therapy: How he learns to eat, what gear he uses and the incredible progress he’s made. (Please note: this is about our unique experience – every child’s case is different, and one approach isn’t necessarily better or worse than another. Also, I am not even remotely a medical professional, despite watching Grey’s Anatomy until McDreamy died.)
It turns out that people with JB’s genetic syndrome have an 80 percent chance of experiencing feeding issues, usually requiring a feeding tube at some point to provide calories and nutrition. Doctors believe it’s related to the hypotonia – as everything from chewing to swallowing to digesting requires muscles.
While JB still receives almost all of his nutrition and hydration through his feeding tube, he’s working on increasing how much he can eat and drink by mouth. As he improves, the hope is that he’ll consume more orally and less by tube.
JB sees a feeding therapist weekly. She is a speech language pathologist (SLP) who specializes in swallowing disorders. In each session, JB, his therapist and I work on a variety of aspects of eating and drinking:
Sensory experience: Feeling, smelling, tasting and playing with the food;
Hand-eye coordination and fine motor skills: Bringing the spoon to his mouth, picking up little pieces of food, drinking out of a cup;
Chewing and swallowing: Taking small enough bites/sips that he can chew and swallow without gagging or vomiting, strengthening his jaw muscles, moving food with his tongue, closing his lips around a spoon rather than scraping food off the spoon with his front teeth.
People often ask me how someone learns to eat. Well, it takes a lot of time, though JB is making great strides, especially as he continues to gain strength in his head, neck and torso. Since starting with his feeding therapist last summer, he’s gone from occasionally having a teaspoon or two of pureed baby food to eating almost an entire jar of baby food, a dozen yogurt melts, 2 ounces of water, or even an entire cookie! Here is a list of some of some products that have helped on this journey.
ezpz cups and spoons: JB’s feeding therapist recommended the ezpz tiny cup when we started re-introducing him to sipping water. The cup is weighted and textured on the bottom, for increased stability. And the top is flexible, so we can direct the water into his mouth more easily. The ezpz tiny spoons are designed to help encourage lip closure (and they are adorable). The best part about ezpz’s products is that every item is tested and approved by special needs therapists – including feeding therapists – to ensure children of all abilities can benefit from the products. (Note: the green cup and red spoon in the photo are ezpz products.)
Ark Therapeutic Z-vibe kit: The Z-vibe is a vibrating sensory tool similar to an electric toothbrush. It’s the width of a pencil with different attachments for working the tongue, teeth, jaw and lips. JB uses it mainly to self soothe himself when he’s in sensory overload – he chews on one of the textured tips and instantly calms. He also sometimes uses the spoon attachments in feeding therapy.
Ark Therapeutic Grabbers: Yup, there’s a repeat brand on this list, because Ark Therapeutic is just that awesome! If you’ve ever wondered what the “P”-shaped teethers JB is chomping away on in photos, they are these guys. They are made in the USA and come in a range of textures, colors and firmnesses to help build chewing and biting strength while also providing oral sensory input. I just ordered several more of these last night, as they are perfect for keeping in diaper bags, the car, his stroller, etc. Sometimes we even use these in feeding therapy to dip into food.
Colgate Kids Powered Toothbrush: One of the best tips we’ve ever received from JB’s OT (occupational therapist) was to get him an electric toothbrush. Because of his positive associations with the Z-vibe, he thinks brushing his teeth is fun, too. (It doesn’t hurt that we get ones with little characters and bright colors!) For many kids with developmental or sensory issues (and their parents), brushing teeth can be one of the worst experiences, so we are fortunate that for now, he doesn’t mind it.
OXO TOT Transitions open cup trainer: This was the cup that helped JB learn to drink water! JB still doesn’t have the strength to sip from a straw or work against the resistance in many children’s cups (after all, the resistance is what makes those cups “spill-proof”), but a completely open cup can be a mess. This cup has a plastic disc on top to hold some of the water back, while allowing water to still flow freely through the sides without any resistance. We have three of these cups and absolutely adore them!
Bumkins waterproof bibs: Feeding therapy is messy – very messy. Cute cotton or muslin bibs just don’t do it when it comes to the serious splash-zone conditions, but we’ve had only good luck with Bumkins waterproof bibs. The best part? I can satisfy my 80’s/90’s nostalgia with the characters and patterns! We have Superman, Nintendo and Lion King ones so far. (See the Simba one pictured above.)
(As with all my posts, these opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are affiliate links in the above post. If you purchase from an affiliate, I may be compensated.)