• One week until Election Day


    On Election Night 2016, I went to bed assuming, like so many other people, that when I woke the next morning Hillary Clinton would be the president elect. After one of my half-dozen or so overnight bathroom trips (after all, I was in my third trimester of pregnancy with JB), I checked the news app on my phone. A live video began playing, and I distinctly remember hearing Chuck Todd say, “We better get used to saying ‘President Donald Trump’.” I threw my phone down and woke up my husband.

    “Trump won. How are we going to raise a son in this world? What are we going to do?” I screamed.

    I wonder how much more scared I would have been for my unborn son if I had known at the time that he had a rare genetic syndrome.

    While health care, education, and social services are important to all Americans, they are especially so for the disabled community, and for families of children with complex medical needs. We are fortunate to live in a state with some of the best disability resources in the nation. In addition, we have the safety net of an incredibly generous family who helps in any way they can. If we didn’t have either of these advantages, I honestly do not know what we would do right now.

    I’d love to tell you right now that “It doesn’t matter who you vote for, just vote!” Guess what, though? It does matter.

    Here’s a recent article from Complex Child magazine comparing the disability platforms of Joe Biden and Donald Trump. Please read it, and learn more about where each candidate stands on the issues most impacting families like ours, and kids like JB.

    You’ll notice that for most categories it says, “Trump currently has no published plan.” In addition, while Biden’s campaign website has an entire disability platform section, Trump has none. Biden’s website mentions disability 132 times (as of October 2), while Trump’s mentioned disability only 19 times.

    If over the next few days you encounter someone spreading misrepresentations of candidates’ views, please consider taking the next step and sharing this information.

    In summary: Please vote for the candidate with a clear plan for addressing the needs of the disabled community and their families. If I’ve learned anything as JB’s mom, it’s that kids with complex medical needs are fighters. We can join in fighting for their rights with informed voting in this presidential election.

    (Image credit: Canva)

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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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