Doing things differently

  • Favorite feeding therapy finds

    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.)

    Do you have any questions about feeding therapy? Feel free to ask away in the comments, or on the Joyful, Brave & Awesome Facebook page.

    (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.)

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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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  • ‘The Boy Who Wiggled’

    Since the day JB was born, we’ve immersed him in the world of Harry Potter. We started reading him the first book in the hospital nursery; and since then have finished the first two books, Fantastic Beasts #1, and are currently working through Tales of Beedle the Bard.

    In October, JB got his first pair of glasses. With the round frames, his bright eyes, and his father’s 20-year history of being told he looked like the famous wizard, it was inevitable that JB start being told he looked like Harry Potter, as well.

    Apparently that wasn’t enough, though, so last week, JB decided to go for the lightning bolt scar on his forehead, as well.

    He was dancing and wiggling around on his changing table while I was getting him ready for bed. And he wiggled right off the changing pad and onto the rug below, cutting his head on the way down.

    As the emergency room staff was giving him stitches (sure enough – in a lightning bolt pattern on his forehead), it took all my strength not to shout something like “Be careful – I made him! He’s fragile!”

    But he’s not. He’s resilient, and fearless, and conniving, and clever and a million other things. He’s a person all his own: A person who communicates a bit differently, and moves in his own way.

    There are several things he can’t currently do. But there are so many more things that he does with ease, and that others may not be able to do. He can smile, laugh, pet his dog, kick, dance, communicate, see, hear, snuggle and more.

    I was never an adventurous kid. I was super cautious and afraid of everything – monkey bars, water slides, thunderstorms (still hate these), etc. JB doesn’t have that caution or fear, though, and while that can obviously be dangerous, it’s a bit nice, too. Nothing is holding him back, not other people’s opinions, not his physical or medical limitations, and, as of last week, not his changing table anymore.

    Get ready for many more adventures from The Boy Who Wiggled. I have a feeling he’s going to give J.K. Rowling’s books a run for their money.

    Photo by Rae Tian on Unsplash.

    Thanks for the title suggestion, Jen!

    (Please note: this post includes Amazon affiliate links.) 

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  • A different kind of retail therapy

    One hour of uninterrupted, totally kid-free “me time”.

    If this gift from the gods fell into your lap, where would you spend it? The library, chapters-deep in a good book? A coffee shop, savoring a latte and cinnamon bun? At home in bed, enjoying a much-needed nap?

    While those are three of my favorite ways to spend a rare afternoon alone, lately another locale has been calling me – underneath the fluorescent lights of my local T.J. Maxx (or Marshalls or Target).

    I’ve always been a big fan of shopping, and even just browsing. Some of my happiest early memories were going to the mall with my mom or grandmother. Mind you, this was in the heyday of mall culture in America (see: Clueless, Saved by the Bell and Mall Madness). But unlike those trips in the 90’s, these T.J. Maxx trips are completely altruistic, or so I tell myself.

    After the winding journey through the cosmetics and housewares aisles, I stop at my intended destination – the toys and books section.

    See – I can’t make JB’s genes magically correct themselves. I can’t will him to walk or talk overnight. But maybe, just maybe, I can find the perfect CVI-friendly Eric Carle board book on clearance, and it will inspire him to start focusing his eyes or holding his head up unassisted.

    That’s how I justify my visits. By telling myself that shopping is now more than just a fun distraction or hobby. It serves a purpose! I’m not wasting money, I am problem solving.

    After all, that single Melissa & Doug puzzle could be the key to unlocking JB’s fine motor skills. Those spiky light-up balls I bought in bulk could be what finally get him to say “ball” – or any word, for that matter. It’s my duty as a good mother to be vigilant not only while watching him, but also while watching online and in stores for products – nay, OPPORTUNITIES – to provide my son with.

    I don’t mess with the medical side of JB’s therapy plan. I trust his doctors and therapists completely, and know that they have the degrees and experience and research to prescribe the best medicines and suggest the best courses of action. Science is not my forte. Shopping, though? Shopping I can do!

    Writer Joel Yanofsky talks about falling into a similar pattern. In his memoir Bad Animals: A Father’s Accidental Education in Autism, he writes how his family’s home was soon overrun with every kind of educational toy or game imaginable. He notes that these purchases were more than desperate attempts to reach out to their son; they were ways to make he and his wife feel like they were affecting change with their son’s progress.

    It wasn’t until I read Yanofsky’s book that I realized that my shopping was in fact a way to gain some control over a future filled with unknowns. I’m not delusional. I know there is no book or puppet or train set that will magically transform JB’s journey into an “easier” one. But for now, that big bin of light-up bouncy sensory balls can keep its place of honor in our living room for JB to enjoy. After all, it’s a heck of a lot more convenient than when those things were in my closet, falling on my head every time I went to grab a pair of shoes!

    Photo by Digital Buggu from Pexels

    (Please note: this post includes an Amazon affiliate link.) 

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