These past two weeks have been an absolute blur for my family. We attended three days of celebrations leading up to Christmas. We hosted Christmas day festivities at our new house. We said tearful goodbyes to JB’s Early Intervention therapists, as he “graduated” from EI. We celebrated JB’s third birthday. We said goodbye to 2019 and hello to 2020. Oh, and tomorrow JB has his first day of preschool. Just another run-of-the-mill 14 days, right?
I’ve got posts planned to recap several of the above events, but for now, I’d just like to thank everyone for joining me on this adventure called my blog over the past year. I have a lot of big ideas for 2020, and I’m hoping to share many of them soon!
I’d also love to hear from you. What are you interested in reading more about this year? Lists of recommended books/toys/products? Interviews with other parents of kids with special needs? Topics that apply to kids of all abilities? Discussions about political issues facing the disabled community? I really want 2020 to be a year of community here on the site and across Instagram and Facebook. I’d love for readers to help make that happen.
Feel free to comment below, or on social media, or in an email. I can’t wait to hear from you!
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:
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.)