Let’s face it: the world is not adapted for people with physical disabilities. Most things are set up for the majority, but most people don’t have cerebral palsy.
Enter cerebral palsy life hacks.
From the time she was very young, we’ve always been on the lookout for ways to modify Sarah Kate’s environment to make her life easier and encourage her independence. I’ve written before about her hand controls for driving, but that’s the just the tip of the adaptive equipment iceberg. A plethora of adaptive equipment is available, but the prices are, frankly, often ridiculous, so we look for workarounds and everyday objects. Here are a few things we’ve tried and items we like.
Managing Drinks and Dishes When You Have Cerebral Palsy
Sarah Kate’s balance is bad, so she trips and falls often. News flash: if you’re carrying food or drinks when you trip and fall, you’re going to make a mess. Even if she doesn’t fall, her gait isn’t smooth and can cause liquids to slosh around. Some people dream about winning the lottery; I dream about having clean, new carpet. 😉 Sarah Kate takes after me in that she has a drink in hand all throughout the day, so we do what we can to minimize the mess.
Our solution is a cabinet full of Tervis and Yeti (and Yeti-knockoff) cups, and every single one has a matching lid. The lids stop the drink from sloshing due to her wobbly gait, and if she falls, the lid minimizes the spill. For cold drinks, she uses stainless steel reusable straws, and we have three sizes – tall skinny ones that fit the Yetis, long extra-wide straws for smoothies, and short angled ones for smaller cups. The straws aren’t absolutely necessary but they do allow her to drink and walk at the same time.
BONUS: stainless steel straws keep your drink cold all the way to your mouth and are SO much better than plastic. Mr. Andi is currently the only member of our four-person household who doesn’t use a lidded cup with a straw – just sayin’ – and I LOVE them.
Drinks aren’t the only things that make a mess if dropped or spilled. Although the non-fragile Tervis and Yeti(ish) cups are all stored in an overhead cabinet, the dishes are in a drawer below waist level. She’s a lot less likely to drop a plate on the floor if she can lean one hand against the counter while reaching in to get it, rather than reaching up above eye level. We also keep the pots and pans and heavier or more awkward items down low.
Carrying Your Food to the Table When Eating Out
When eating at counter service restaurants as a kid, Sarah Kate was usually with an adult who carried her food to the table (and, honestly, I still do it when we’re together!) But now she’s driving herself and going places with friends – who wants to ask someone else to carry their lunch tray, especially a stranger? Instead, she orders her food To Go because it’s easier to carry a bag of food than a tray. It’s also easier to throw away a bag of trash than to juggle getting the stuff off of a tray into the waste bin. (BONUS: if she doesn’t eat it all, she can use that same bag to take the leftovers home!)
Finding, Fitting, and Lacing Shoes When You Have Cerebral Palsy
Get to know your local shoe hospital, part 1: Sarah Kate loves Converse, and in the past we ordered custom shoes with zippers online. When that style was discontinued, we asked a local shoe hospital to add zippers to standard shoes for us. Each zipper cost about $20 (so for the pair the zippers cost as much as the shoes themselves). The zippers also weren’t installed as cleanly as the factory ones, but she got to wear the shoes she liked, so it was worth it.
Get to know your local shoe hospital, part 1: Sarah Kate loves Converse, and in the past we ordered custom shoes with zippers online. When that style was discontinued, we asked a local shoe hospital to add zippers to standard shoes for us. Each zipper cost about $20 (so for the pair the zippers cost as much as the shoes themselves). The zippers also weren’t installed as cleanly as the factory ones, but she got to wear the shoes she liked, so it was worth it.
Get to know your local shoe hospital, part 2: We used the shoe hospital again a year later when Sarah Kate started Catholic high school. Leather saddle oxfords were part of the uniform and the only size that would fit over her braces was THREE WHOLE SIZES bigger than normal. They not only looked like clown shoes on her tiny foot, but also made her trip. Instead, we asked the shoe hospital to stretch the width of a reasonably-sized shoe.
Sarah Kate can tie her shoes, however… reaching her feet is a struggle due to her tight legs, and her right hand isn’t particularly nimble. Enter Lock Laces, which transform her Nikes into slip-ons that still conform and provide support to her foot. She can easily put on and remove athletic shoes while also having a comfortably snug fit without ever tying a lace. Lock laces are also available in longer lengths for lace-up boots, but she hasn’t tried them.
Drying Her Hair With a Cerebral Palsy-Affected Hand
Because of her poor overall balance and her mildly affected right arm and hand, Sarah Kate can’t stand in front of a mirror, hold a hair dryer, and brush/style her hair all at once. Lucky for her (snort!) she also has long, incredibly thick hair that takes forever to dry.
The solution to the hair drying problem actually involves two products:
- First: I bought a good hair dryer that cuts the drying time significantly. (Note: It took me four decades to realize what a difference a good dryer makes. Life-changing, my friends.)
- Second: we bought a dryer stand. She sits on a stool in her room and just turns her body and brushes her hair while it dries.
Showering When You Have Trouble Standing Because of Cerebral Palsy
You could spend thousands of dollars making your bathroom accessible, but we’ve gotten by with inexpensive, easily removable modifications. Sarah Kate uses a basic shower bench and suction hand grip. The hand grip is for balance – it doesn’t support her full weight – so your mileage may vary. She used a handheld shower head for awhile, but she felt it was one too many things to juggle. Now she uses the standard built-in shower head, but she sits on the bench with her back toward the spray.
Sarah Kate also uses pump versions of shampoo, conditioner, and body wash (no bars of soap). When you add water and soap the odds of spilling, dropping, or even just simply pouring too much into her hand and wasting product go way up. A lot of brands sell extra-large pump bottle sizes (though you may need to purchase them from online retailers such as Amazon), but even if your favorite products aren’t available in a pump bottle, you can purchase inexpensive empty ones (and some even come with a screw-on funnel).
Closing Your Car’s Liftgate When You Have Poor Balance Because of Cerebral Palsy
We bought Sarah Kate a VW Beetle as her first car, and we were concerned about her ability (or not) to close the liftgate. In addition to her balance issues, she’s also short and can’t stretch on her tiptoes. She can stand to the side and reach the grab handle well enough to get it down, but when she does her whole body leans awkwardly against the fender. It works in a pinch, but if the car is wet or dirty (which is pretty often when you live in a subtropical climate), it’s not ideal.
The liftgate doesn’t have an electronic button or a pull strap, either, and there’s no good place for one. When we bought the car, we considered switching the struts to those for a Jetta to prevent the liftgate from opening as much, but ultimately decided it wasn’t safe and hoped a solution would present itself once we got the car home.
The solution was simple and cheap. I discovered it by accident when I placed her spare quad cane in the trunk. The cane is helpful as a backup for standing, of course, but it now has a secondary purpose: the handle pops off and she can use it to pull the liftgate down without scratching the car or getting her clothes dirty.
These are just a few of the tricks we’ve tried or methods we’ve uncovered over the years. Tell me what “cerebral palsy life hacks” work for you!
Bonus Tip for Wheelchair-Using Kids
I’ve got one more fun tip from my friend Heather, whose daughter has spina bifida. Sarah Kate’s a little too old for it now, but I love it so much!
If your child is a wheelchair user and you visit Walt Disney World, Universal Studios, Monster Jam, Comic-Con or basically anywhere that fan autographs are collected, buy a wheelchair spoke guard and ask your child’s favorite personalities sign it. It makes for a great conversation piece and an amazing memento of a special day. I wish I’d thought of it when Sarah Kate was young enough to enjoy it – we made so many trips to Walt Disney World and it would have been so easy to do!
Technology life hacks for Cerebral Palsy.
On Laptop computers. Choose ruggedness and ease of service. I recommend Panasonic Toughbook laptops highly if one is prone to taking tumbles and/or has startle reflex. They survive being bounced in unplanned ways better. The old CF 19 convertible tablet (recently discontinued) is a favorite of mine. My example has survived 6 falls. If higher performance is needed. Consider Dell Latitudes from middle of the line up, or Lenovo ThinkPad X or T series. As those are sturdy and durable. New ones can also have accidental damage coverage, and service and support is friendly and fast. And if service is needed, the technician comes to you.
Cameras and photography (Andi, this is your passion)
Consider a heavier camera, as they’re easier to hand hold under most situations. I tend to be biased, I am a film man, and love old heavy Nikon F and F2 classics, as they hold up under CP duty better. And I prefer examples with battle scars so I am not afraid to use them when I desire without emotion. And they do better staying out of the camera repair shop. High resolution Film scans do fine. Bogen’s old Super Clamp, a Bogen ball head, and cable release is a superb wheelchair mount for cameras, and can accept most every camera up to heavy Pro DSLR options. On DSLR cameras, image stabilization is your best friend when you have Cerebral Palsy. (P.S. My photography tagline is “The Spastic Image”)
Great tip about the camera! Sarah Kate has expressed an interest in photography and they info about using a heavier camera is something I hadn’t considered. Right now she just has an old Canon Rebel, but adding a battery grip would give it some additional heft.
If Sarah Kate is traveling and doesn’t have room for the stand she could get one of those all in one brush dryer combos. Not perfect but much easier to manipulate than dryer and brush.
We have one! Hers is actually a round brush – not ideal for her hair type but a great tip for traveling and for people who don’t have So. Much. Hair.
The lidded Tervis and Yeti type cups are great and very functional. And I haven’t broken one yet. Does cut down on spills. Also, frequently used items at accessible height is a wise thing to do. I do use a shower bench. I have grab bars if I have a bath, and need to pull myself up and out. I can reach the liftgate on my Ford Taurus Wagon, and am soon going to be also driving a 2002 Saturn L 200 sedan (mom’s car, she’s driving less than she used to). I’ll soon be purchasing a set of portable hand controls (10-30 minutes to install and easily done) and a steering knob. I can also use these when driving a loaner car, rental, or test driving something. Sarah Kate’s tip about ordering restaurant food is something I hadn’t thought about, and a practical idea.