During a telehealth appointment last month, my doctor mentioned she was glad to see me up and around. (We had been discussing the latest wave of the pandemic, and my ankle injury last fall).
“Well, I wouldn’t say I’m ‘up and around’ at the moment,” I joked. “I’m just sitting on my bed.”
“But you’re sitting upright. And that’s something,” she replied.
JB has started sitting independently, pulling himself up from a lying down position and just sitting up, whether in bed or on the sofa or the floor. This is a HUGE milestone, and we are so proud of him for his determination and perseverance in getting to this point. The funny part, though, is that he’s remained pretty unfazed by the whole thing, giving us such nonchalant looks when we praise him for his hard work and how well he’s sitting up. To him, he’s just trying a new way of balancing himself and seeing things from a new perspective. It’s nothing to celebrate or think too hard about. In fact, the bigger deal we make out of him sitting, the more likely he is to start wobbling and possibly fall.
I feel like that’s what many of us have been doing these past few months – just trying to sit up. Because some days, amid the omicron outbreaks and the cancelled plans and the childcare dilemmas, that is all we can do. It doesn’t feel like we’ve accomplished some major feat – we are “only” getting through this pandemic the best way we can. Like JB, we are balancing and looking at things a new way, and if we think too hard about it, we are likely to second-guess our selves and our efforts.
So today, even if all you’ve done is sit upright, know that it’s still something. And it is enough.
Okay, have we got JB’s backpack? Check. AAC device? Check. Glasses? Check. Leg braces? Check. Feeding tube emergency kit? Check. Jacket? Check Face mask? Check. Additional face mask? Check.
I am reviewing everything one last time in preparation for tomorrow. It’s JB’s first day of school: Well, his first day attending school in person in 2021. This week, he will begin attending some of his therapy sessions in person, along with outdoor recess with his classmates. We are finally allowing him out of his pandemic bubble, and I’m not sure if I’m excited or if I want to keep him in this protected cocoon a little while longer.
Almost all parents have had to grapple with decisions like this over the past year. Is it safe for my child to return to school or daycare? Do the benefits outweigh the drawbacks? Should we wait until there’s a vaccine approved for kids? Can we buy enough sanitizing spray for me to sleep at night? Will the other kids be good about handwashing? Should I maybe go to class with him to make sure he doesn’t lick anything? (Pretty sure this last one is specific to me, but figured I’d keep it in here just in case anyone else relates!)
I don’t know if this hesitation is because I’m a parent of a child with complex medical needs, because I’m a parent in the midst of a pandemic, or because I’m a parent. What I do know is JB needs to be in school again, even if it is only for a few hours a week at first. He needs to have therapists and teachers who are not his parents. He needs a classroom outside of our house. He needs to grow, and explore, and cause (good-natured) mischief, and see friends in person and not only on a screen. He needs to listen to music other than the “Agatha All Along” theme song I seem to be humming ALL THE TIME.
And yet, right now I am literally drumming my fingernails on my keyboard – sitcom secretary style – because of all my anxiety. What if it is too soon? What if JB gets sick, whether it’s from COVID-19 or a cold or some other type of bug? I’m trying not to let my thoughts spiral out of control, but that’s easier said than done.
I’ve double-checked the backpack, and I think we are as ready as we’ll ever be for school tomorrow.
Oh, and I asked my science-teacher husband; He can’t invent a Wandavision-like force field to protect JB from coronavirus because apparently “that’s not how science (or the Marvel universe) works.” Whatever.
Do you remember where we were a year ago this week? I do.
This was the week everyone realized it wouldn’t be a matter of if, but when a pandemic would be declared.
We were hearing more and more about COVID-19, and everyone was worried about what this meant. We were debating whether or not to send you to school. It didn’t matter, though, because by Thursday afternoon, all schools had closed indefinitely.
Your birthday party was supposed to be that Saturday, as we had decided March would be far less hectic than the week between Christmas and New Year’s Day. (We thought we were sooooo clever!) So, as everything shut down, we spread the word that the party would be held once this whole thing was over. (I wanted to keep our order for two-dozen cupcakes, but realized it may not be the best decision health-wise.) We figured it would be a few months, at most.
We had no idea what to expect when this started. As I wrote in a blog post during that time, “It feels like we are all preparing for some big storm, but without a definite ‘start’ and ‘stop’ time. We all bought the bread and milk. Schools are closed. So when is the snow day getting here? Is it coming in a day, week, month, year?”
We tried to keep our family as busy as possible during those first few weeks. We watched a LOT of animal-related educational videos on YouTube, taking advantage of the fact that your dad is a science teacher! You and I made loads of art projects, like the hands pictured above. I took on additional freelance writing assignments, as I found writing about “the helpers” was the best way to ease my anxiety during this uncertain time. And we spent as much time as we possibly could in our backyard, hoping the fresh air would boost our spirits.
I don’t know what you will remember about these strange past 12 months. Will you recall all of the Zoom classes and family get-togethers? Will you tell people how unbelievably cluttered our house was once it also became a 24/7 preschool/therapy room/high school science classroom/office/restaurant/movie theater/concert venue/doctor’s office/summer camp? Will you look back longingly on the small, quiet at-home celebrations we had for Easter, Thanksgiving and Christmas? Will you one day tell people about how your crazy parents went through all sorts of “phases” during this time at home, including (but not limited to) sourdough, model building, succulents, painting, and Tiger King phases?
Friday, one of your school therapists said to me excitedly, “Megan, I hope you see that there is a light at the end of this tunnel,” as she and I discussed plans for you to return to some in-person classes. I am still afraid to “jinx” anything, but I am once again starting to have hope.
One of my favorite writers, Emily P. Freeman, said the following in a recent episode of her podcast The Next Right Thing:
When I look back to this time one year ago, one thing that stands out was how impossible it became to make any plans at all. We were at the beginning of the great pause, but we didn’t fully know it yet . . . . So much felt impossible for so long, and some things still do, if I’m honest, but one question is rising up in me . . . . Is it time to dream again?
JB, I have no idea what this next year will bring. I know there are positive signs, such as the vaccines, new national leadership, and the reopening of schools. Is it time to dream again, though? You bet it is! We may have to wait another year before we take that trip to Sesame Place, but nothing could postpone your strength, resolve and sense of humor. Kid, you’ll move mountains!
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When I was little, I loved looking through my baby book. As the firstborn child, my book was obviously meticulously filled out with each and every detail about my first year or so. (#SorryNotSorry, dearest younger siblings!) I couldn’t believe I was ever that tiny, or my parents were so young, or hairstyles and eyeglasses were so big – long live the 1980s!
When I was pregnant with JB, my husband and I purchased a baby book called When We Became Three. It had all sorts of cute prompts about how we met, what our first date was like, who attended our wedding, what my pregnancy cravings were, etc., all the way up to the baby’s second or third year.
I stopped filling the book out when JB was about four months old. It was clear that the categories and questions no longer applied to the “Three” that “We” had become.
From the moment they are born, our kids are literally measured against other children, as we are given not just their height and weight in inches and pounds, respectfully, but also as percentages compared to other children their age.
Then the developmental milestone questions start. Each pediatrician appointment those first few months (and years) is filled with questions like “Is s/he grasping toys?” or “Is s/he making consonant and vowel sounds?”.
If a child doesn’t meet certain milestones, additional assessments may be made, including a variety of formal tests that literally break down the child’s emotional, intellectual, social, physical and developmental progress in terms of age. Imagine getting an official medical document saying your several-year-old child has the social skills of a several-month-old infant, for example. Guess what? It feels like a slap in the face, and a giant F written in red pen across your forehead. “YOU HAVE FAILED AS A PARENT,” that document screams, no matter how many times doctors, therapists, and loved ones tell you “it’s just how they have to write it” or “it needs to be an objective assessment”.
Yes, I get that they need to use consistent measurements in these reports. That’s how science works; I am aware of this. It is not some big conspiracy to make us millennial parents feel triggered. But I also get that it’s pretty likely the medical professional who came up with these reports, just like the professional who coined the term “failure to thrive”, wasn’t an insecure new parent already trying to keep their head above water during this terrifying new chapter of their life.
Every time I need to fill out new patient forms for JB, I’m faced with pages of these same milestone questions: “Can your child speak in complete sentences? When did your child first smile? At what age did your child begin eating solid foods? When did your child quote The Office for the first time?” (Okay, that last one was obviously made up, but I definitely WILL be returning to JB’s baby book to mark that momentous occasion when it happens!)
Some parents of disabled kids like using the term “inchstones” – as opposed to “milestones” – to describe the small but significant steps of progress their children make. I don’t personally use this word, because I feel like it unintentionally does the opposite and minimizes disabled kids’ efforts under the guise of being “cutesy”.
I do, however love the idea of celebrating a child’s individual achievements and timelines. For our family, that meant texting family, friends and former therapists when JB showed us he could identify animals and colors. It meant taking photos and cheering when he started bearing weight on his legs without trunk support. It means telling him every day how proud we are of his hard work and determination.
We have made it a priority to fill JB’s bookcase with stories of characters accomplishing things at their own pace through perseverance. Here are a few of our family’s favorite picture books on this topic:
Well, that’s my rant about milestones. I completely understand that none of the above scenarios are intended to shame parents. However, realizing something is not meant to be taken personally, and not actually taking it personally, are two very different things. So I guess one of my 2021 resolutions is going to be not seeing “FAILURE AS A PARENT” whenever I fill out forms or answer physicians’ questions. Because “learning to give myself some credit” is one milestone I’ve been meaning to check off in my own baby book for almost 35 years now!
I’ve been pretty quiet on the blog lately. I’d love to say it’s because I’ve been vacationing somewhere tropical, or traveling the country as a professional “90’s boy band trivia” expert. Alas, the real reason is not that exciting.
I said from the start of this website that I’m not going to go into detail about JB’s diagnoses and health history, as that’s his story to tell (or not tell). But my story? I’m finally ready to share a bit of that.
I’ve been dealing with my anxiety and depression these past few months.
OK, technically I’ve been dealing with anxiety and depression for more than half of my life. But lately, it has been a far greater struggle.
I feel like most of the depictions of parents are one of two things: Either they are flawless superheroes, or they are ungrateful whiny monsters. However, I think most of us, at least in my experience, fall somewhere in the middle. We all have our own baggage from before becoming parents, and that doesn’t magically disappear the moment we become “Mom” or “Dad”.
My mental health issues were not caused by becoming a parent. I want to make that clear. Certain factors – lack of sleep, isolation, transitions, time and financial constraints, hypervigilance, frequent medical uncertainty, etc. – have made existing issues harder to deal with on a daily basis, however.
That’s where my amazing support system has come in. I am fortunate enough to have an incredible group of both loved ones and professionals looking out for me.
I am relieved that there is far less of a stigma now than there was even a decade ago. Celebrities from Kristen Bell to Lizzo to Selena Gomez have publicly shared their experiences with depression and/or anxiety. Heck, this year’s Emmy for Outstanding Choreography in a Scripted Series went to a song-and-dance number from Crazy Ex-Girlfriend entitled “Antidepressants Are So Not a Big Deal!” (Side note: I miss this show so much.)
I’m feeling “better” (which I define as “feeling more like myself”) now, but I know there’s still a ways to go. I’m nowhere near joyful, brave or awesome at the moment, but I’m sure trying.
So why am I telling you all this today?
Next week is Thanksgiving here in the U.S. (Sorry, Canada, I’m too late for yours!) The holidays are crazy stressful as it is; mental health issues or extenuating circumstances (loss of a loved one, change in employment, health crisis, etc.) can make this time even more challenging. If someone seems a little “off” during this time, give them the benefit of the doubt instead of talking about them behind their back when they go to grab seconds. They may be going through something – whether big or small.
Little acts of kindness can go even further this time of year. Surprise the person behind you in the drive-thru by paying for their order. Send a funny .gif to your college roommate. Fill a teapot with sentimental stuff like a tiny pencil and a high school photo of yourself and give it to the receptionist at your Office. (Then again, do not do this. You are not Jim Halpert, and you never will be. Accept this.)
Finally, I’m obviously not a medical expert of any kind. But if you aren’t feeling like yourself, please let someone know and ask for help. There are people out there who genuinely want to help.
The last time I had spent more than a day away from JB was in October 2017, when I went on a 72-hour business trip to Maryland.
Since then, I’ve been in constant “mom mode”: Troubleshooting middle-of-the-night feeding pump error messages, working with JB on his never-ending list of therapy exercises, shuttling JB from one doctor appointment to another, and walking around with a patent-pending mix of dry shampoo and baby food in my hair. (Sephora, call me if you want to start selling this!)
Kendra Adachi of The Lazy Genius Collective, one of my favorite bloggers/podcasters, says, “Self-care is anything that makes you feel more like yourself.”
The truth is, since my shift to staying at home full time with JB, I really haven’t felt much like myself. Don’t get me wrong: I know how important it is for his health and his therapy that I am home with him, and I love spending time with him. But it is exhausting at times.
I know other people are going through far harder things, and that my husband and I are fortunate to have a fantastically involved family to help us in countless ways. But I also knew that, for me, in my situation at this exact moment, I needed to step away for a few days before I lost myself even more.
That’s where A Mother’s Rest came in.
Back in February, someone in a special needs parenting Facebook group I belong to shared a link to A Mother’s Rest. The organization’s mission is “to improve the emotional and physical health of caregivers through proactive, affordable, restorative respite opportunities.” The group works with bed and breakfasts throughout the country to provide low-cost getaways for parents and families who care for loved ones with disabilities or special needs.
I came across the link at the perfect time. I was upset because we had to leave early from a rare date night out because JB pulled out his feeding tube. I felt like I wasn’t meant to ever have a moment to myself again. I knew I better start planning this trip now. I signed up the next morning, before I could talk myself out of it. I selected a May weekend at a picturesque little inn in Maine. It was far enough away I wouldn’t be tempted to drive back and bail out if feeling guilty about being away, but it wasn’t too far that I couldn’t drive the handful of hours home in case of an emergency.
Over the next few months, I had this weekend to look forward to. Whenever I was at my wits’ end, I reminded myself “weekend in Maine, weekend in Maine”.
Honestly, the weekend couldn’t have come at a better time.
We’ve been eyeballs deep in house hunting, along with working with the school systems and JB’s various therapists to start the preschool enrollment process. We also added several new medical specialists to JB’s team, resulting in additional appointments. Basically, it has been chaos.
And I was able to step away from it all (okay, most of it) during my weekend away in early May.
I read. I doodled. I slept. I shopped. I met up with friends. I ate my weight in fried clams. I watched Law & Order: SVU marathons. (If that doesn’t sound relaxing or entertaining to you, I’d argue you aren’t watching the right episodes. May I suggest the greatest SVU episode of ALL TIME?)
Since it was a B&B, I had someone making me breakfast each morning, and asking me if there was anything I needed. The innkeepers – some of the kindest people I’ve ever met – had even set up complimentary massages for us! (Another special-needs mom was also at the inn that weekend.)
I’d love to say my weekend away magically solved everything. That I came back refreshed and revived and never worried about anything else again. That would be a lie, though. Remember, this is real life.
The following week was possibly the most stressed I’ve been in years, thanks to house-related drama. (I’m beginning to wonder if the people on House Hunters aren’t all actually horrible people as I originally thought, but it’s just the process that makes them seem insufferable.) But I genuinely believe the relief from my weekend away made it possible to even attempt putting one foot in front of the other during those emotional few days. I knew there was still a tiny piece of me that was “me” inside, and I needed to remind myself of that as often as necessary.
Simply put: My time away helped me power through when I felt as trapped as a gibbon in a basketball. And if you had watched that SVU episode I mentioned earlier, you would be laughing right now, nodding in agreement with that profound reference. You are welcome.
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.)
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.)
JB’s second birthday party is this weekend, and I’m in the process of getting last-minute details ready. Today alone I’ve learned that there are approximately 4 million varieties of balloon weights, and 590 types of ready-made “white” frosting (because, let’s be honest, I’m not making that from scratch).
Another thing on my mind, though, is the freaking light switch behind the high chair in our kitchen/living/dining area. Also known as the bane of my existence in photos over the past two years.
What’s wrong with the switch? Well, it sticks out like a sore thumb – a cheap, dingy white thing on a chocolate brown wall. And it shows up in every single photo of JB in his high chair. (Because of JB’s low muscle tone – also known as hypotonia – he can only sit up with the assistance of harnesses and straps like those on the high chair, car seat, or his special therapy chair and desk.)
It would be easy to Photoshop the light switch away, or to shift the highchair six inches to the left or right. But no. This time, I am not going to play that game.
No one is focusing on the light switch. They aren’t thinking, “God, that’s ugly – why didn’t they paint it?” or “Well, that’s what they get for renting and not owning their home. What failures!”
What are they thinking? I have no idea. Maybe “Look how happy he is!” or “He’s getting better at his head control.” Whatever it is, if they are focused on the light switch, they are missing out on a beautiful little boy with eyes filled with joy, trust and curiosity.
I want people to appreciate the strength and resilience I see in my child. As my husband perfectly stated: “JB doesn’t feel sorry for himself, and he doesn’t want you to feel sorry for him either!” I want to show him at his best: When he’s trying a new activity like coloring or playing with bubbles; when he stops projectile vomiting for one whole hour and I can bring him to the library or on a walk through the neighborhood.
I don’t know what JB’s future holds; I can’t control that. I can control what is in the Instagram frame, though – and today I’m deciding to let that silly light switch stay in the picture.