The dreaded stairs…

Living in a progressive state like Massachusetts, you’d think I wouldn’t have to wonder about accessibility in businesses. But I have to remind myself that despite the progressive nature of the state, that buildings are old, steeped in history. 

That reminder, however, doesn’t help when you have legs that just don’t mix well with stairs. My CMT, while I push through as much as I physically can, does have its say in certain situations. A set of stairs is one of those situations.

When I showed up to meet a new client today in her Harvard Square office, the reminder of the CMT, the old buildings, etc., smacked me in the face. She told me she was on the second floor. Secretly I knew there wouldn’t be an elevator, but I was hoping.

The hope was lost the minute I buzzed myself in.

Immediately I was staring at the steepest set of stairs I’d seen in awhile. But I climbed them, one by one, lifting my heavy feet as best as possible: right foot slops up, the left drags behind it, the stair treads creaking as if to sigh as each foot lands heavily on its base. My white knuckles grasped the rail with my right hand and pulled my struggling body up, while my backpack slid noisily against my down vest. It was a heave-ho effort that repeated until I reached the top, 29 stairs later.

I stopped to give my strained leg muscles a break before pulling out my cell to find her suite number. 4. She emailed she was in Suite 4, to come in and sit in the waiting area and she would get me when she was free. Great. I looked around: Suite 1 was on my right. Suite 3 was straight ahead. Suite 2 was to the left, with Suite 4 just past it. I opened the door only to find another set of stairs.

I almost turned around, thinking with my backpack, pocketbook and my CMT there’s no way I will make it. Instead I took a breath and one step at a time I heaved my right then my left foot on to each step. I leaned into the wall on which the bannister was mounted and leveraged my way up the stairs, all the while praying she didn’t come out early to greet me before I made the successful climb.

I found the otherwise uncomfortable gray plastic chairs in the waiting room a comfort to my now-strained, somewhat Jell-o-y quads. Instead of quitting or asking why she didn’t have a more accessible office, I reveled in my success. I also thanked God I didn’t have to lug my son up the stairs with me and that there was a railing. Even one step without a railing could send me falling.

Glass half full? How else can I get through life as a disabled mother successfully?Image

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Dear Target…


Dear Target: We use Charlie Banana cloth diapers during the day for our son, but at night, because he is such a great sleeper, often sleeping 13-14 hours at a time, we use disposable diapers. Pampers are expensive, so a few friends recommended Target brand.

At first glance, they seemed OK. Not as solid as Pampers, but we thought they’d do for our limited needs.

Boy were we wrong!

With my Charcot Marie Tooth disease, I have trouble grasping things and have no strength in my hands roughly from the tip of my finger to the first knuckle with which it intersects. This makes grabbing small items nearly impossible. Small chores such as opening a water bottle, zipping a zipper or tying shoelaces can’t be done without help. But diapers have never been an issue—the Pampers tabs are always big enough for me.

The Target ones, however, showed me that it’s not the tabs that make it doable or not, it’s the material underneath the stickiness. The Pampers allow me to adhere the tab on one side, then the other, then go back to readjust. The Target brand diapers don’t have special material under the tabs that make it easy—or in some cases, doable—to adjust the diaper once it has been fastened the first time.

The first diaper I used turned into 5 because I kept ripping the material trying to undo it. It’s not easy, you know, to change a 14-month-old’s diaper! He squirmed so much, it was nearly impossible to put a disposable on him, so I used cloth and got up in the middle of the night to change him—something I don’t feel I should have to do.

Bottom line is I learned my lesson: cheaper isn’t always worth the hassle!

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A revolution is headed my way!

I won’t lie: if I’m home alone with my son, and all of his outfits without zippers or buttons are dirty, chances are he is being dressed in feetie pajamas or his fly will not get zipped up!

With the CMT, my fingers don’t always work well enough to zip up a pair of pants on the squirmiest 1-year-old this side of the Charles River. I’ve often wondered when those with disabilities were going to be considered when clothes and other things were designed. Finally, though, we have the potential for me to never again have to say “Honey, can you zip this for me, please?”

A woman and her son went on a mission to design a zipper a family member with a form of muscular dystrophy can use. And after 100 prototypes, they found one, using magnets to guide the contraption.

The best part? Under Armour is going to use the zipper by the end of the year! Such great news and so good to know someone is thinking of the minority!

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Zippers only, please

Baby Gap clothes, while cute, are not functional when you have a disability and/or a squirmy baby.

Baby Gap clothes, while cute, are not functional when you have a disability and/or a squirmy baby.

To the person who created baby clothes without zippers or Velcro: Do you hate me? Have you never seen a squirmy baby? Or a mother whose hands don’t work very well because of her disability? Methinks the answer to all of those questions is: no.

I think you are a childless person who simply designs “cute” clothes. That’s fine for some, but can you be considerate and make others that those of us who fit in some or all of those categories not feel inadequate or anxious when attempting—and failing—to change our kids.

The worst offender? The Baby Gap. (see photo below). Not only do they not have zippers, they have teeny, tiny buttons. EVERYWHERE—the crotch, the waistline. Even along the shoulders. It’s amazing that a baby hasn’t choked or a mother hasn’t gone off the deep end attempting to clothe her child.

The other Gap problem is the jeans. They actually have a button and fly—for infants! Amazing.

The other clothiers, I believe are just falling into the snap craze. Carter’s and The Children’s Place—neither have zippers often. When they do, I snap them up, but it’s rare.

Target has zippers and I was so excited to find them—until I realized they are top-down zippers and need to be actually put together to zip. Pretty sure I would be able to snap an outfit quicker than I’d be able to zip one of their outfits, and that’s not saying much.

I unfortunately didn’t notice this style zipper until I was out with Jameson one day when he peed through his morning outfit. I grabbed my backup outfit—a Target zippie with stripes. How embarrassed was I when I realized I was never going to be able to get it closed properly. I assessed my options: leave him in just a diaper; put the outfit on him, but not zip it; put his wet clothes back on him; or ask for help. Like that’s not embarrassing, but it was the only feasible option. Hi, I’m a mother of a boy and I am not capable of dressing him without my wife here. Can you help? I had some choice words for Target that day, but unfortunately they will never be heard as fashion outweighs form even in infant clothing.

The unfortunate thing is that I am limited in what I can dress my own son in. I just wish I had choices.

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Some Assembly Required

Neary 4 months old and I can’t believe Jameson is ours–they let us take him home from the hospital? Amazing.

But here he is and I’m finding out it’s not as easy as 1-2-3 to raise a happy, healthy baby. So many questions, and, in the advent of technology, so many paths to a supposed answer. Call this number, press 1, then 4, then hold for 10 minutes.

The latest issue? Disney’s Baby Einstein Neptune Exersaucer. It looked perfect: ocean theme, matches his activity mat that he loves and it’s Disney—a favorite of mine. That was until my wife pulled it out of the box to assemble.

Among the what-seemed-like 100 parts, was a book of instructions—or so we thought. I open to find numbers on diagrams with arrows pointing every which way. For someone with a disability such as mine that affects the hand muscles and dexterity, it spelled nightmare. For someone with less-than-stellar ability to look at pictures and translate to assembly, like the wife, it also spelled nightmare.

We sat on the ground, pieces splayed before us, son in his swing, hoping we would be done before his nap ended. Slowly, but surely, we pieced it together, but it was far from easy, and “some assembly” should have said “all assembly.” My fingers couldn’t work the small parts, so while I read and translated, she assembled. I had her put one piece in the wrong slot and it took 20 minutes and a flat-head screwdriver to remove said piece and place it in its right home.

In the end, Jameson loved it, but these moms might think twice about buying anything from Disney again.exersaucer

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