Parenting Kids with Disabilities: What You Can't See (Invisible Aspects of CP)

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Previously on Summer Blog Series 2017: Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation / Community / Advocacy / Autonomy and Consent / Conclusion

Dear Parents,

Growing up with Cerebral Palsy, there were aspects of my disability that I knew existed, but I didn't know how to articulate them as a child.  Now that I'm an adult, I can share with you about some of these lesser known aspects of this disability.  I hope that, especially if your child has CP, too, you'll find this post helpful.

SPASTICITY:

If your child has spastic CP, you're probably well aware of their high muscle tone in affected areas.  Maybe your child has had surgery to help lessen their spasticity.  Maybe you have to stretch your child's tense muscles for mobility reasons.

But perhaps you didn't know that there are outside factors that can impact your child's spasticity:

Cold:

If you live where it gets cold in the winter, you know well how the frigid temperatures can feel like they freeze your muscles and make it difficult to move.  For those of us with spasticity, this is even more pronounced.

This might make tasks your child can regularly perform with little to moderate difficulty much harder to complete.  They might be physically unable to move at all if they become too cold.  They will probably move more slowly than usual.  Their impacted muscles, or muscles in a certain place, might feel overly tense.  They might become sore.  They might become exhausted more quickly after being outside in the cold and require more time to rest after expending all the energy required to manage in the cold.

Just understanding this could go a long way for your child.  Helping your child get warm ASAP can help, too.  (A blanket, hot chocolate, or a warm bath or shower are all solid options.)

Strong Emotions:

I bet you've noticed your child with CP's walk (or other movement) isn't always consistent.  Maybe you've seen them perform a physical task "well" so you know they can.  But perhaps the next time you ask them to do it, they cannot recreate the previous result.

This could be due to the emotions your child feels being put on the spot.  Strong feelings (fear, anger, embarrassment, and even strong joy) can make our spasticity stronger.  Maybe you've noticed your child's walk or other movement gets inconsistent all of a sudden.  You say, "Put your foot down."  Or, "Put your arm down," and suddenly that heel is off the ground even more, or that arm is definitely in the air.

I know it looks intentional.

Trust me, it isn't.  Just like you can't help a blush or a sneeze, we can't help when spasticity kicks in.

The best way you can support your child while doing something physical is to be calm.  And if possible, be quiet.  Physical movement takes a lot of concentration for us.  Motor planning to do things like climb stairs, hold a pencil or tie our shoes all take concentration.  Drawing attention to your child when they are actively trying to complete a task will likely trigger their spasticity.

So praise them when they are done with the task at hand, when more intense spasticity won't impact what they're doing.

Overflow:

If you've ever seen your kid concentrating really hard on one thing, or using one part of their body for one thing, maybe you've noticed their toes curl or the spasticity in their arm(s) or leg(s) engage.

I'm not a scientist, but I've heard this is called overflow.  It's like when you're writing something and your tongue sticks out while you're concentrating.  It's not intentional.  You probably don't even think about it, it just happens.

Sometimes, it's hard for me to even hold a conversation while I am walking, biking or stretching.  For some things, I have to be completely silent, and focus all my energy on staying relaxed.  I think it's because we have trouble isolating movement to just one part of our bodies. So our legs (or whatever's affected by spasticity) always want to get involved, too.

If you've seen your kid's spasticity kick in while they are playing a video game or reading a book, it's okay.  It's normal.  For us, it's normal.

Speed:

Maybe you've noticed whenever you ask your kid with CP to hurry...they don't.

My friends with CP and I joke that it's because we only have two speeds: CP Regular (our comfortable walking speed) and CP Fast (which is actually slower than CP Regular.)

That's because spasticity kicks in with speed.  So when we try to go fast, it actually slows us down.

Your best bet as a parent is to give your kiddo with CP plenty of time to get ready in the morning or to use the bathroom before leaving the house.

Asking them to hurry just...won't work. ;)

Shoes:

I'm not sure if it's just me, but my spasticity feels more intense when I am barefoot.  The soles of my feet are really sensitive, so that feeling input like carpet or grass directly on them makes my spasticity engage.

I have always felt like I move better in shoes.  And it's important that those shoes have good tread.  When tread starts wearing off (about every three months seems typical for those of us with CP) our spasticity gets mad.

If your child's spasticity seems to be more present, check the soles of their shoes.  You'll notice if the sole seems worn smooth in a certain place.  That's the place they need to be able to count on traction to support their walk.

Gait Testing:

If your child has periodic evaluations for AFOs or other medical interventions, maybe you've noticed they don't do as well as you know they can.  If they can walk (independently or with adaptive equipment) it might be frustrating to you that they don't seem to recreate this result for the people who need to see it the most.

But parents, gait evaluations combine absolutely everything that makes our spasticity engage.  Chances are, we are in less clothing, so we're cold.  We're also keenly aware that we are being watched and evaluated, so we are nervous.  And we're barefoot, without our shoes and the traction they provide.

In this situation (and all situations) know that your child is always trying the best they can.  They are contending with things that aren't a factor for most people, but really change the game when you have CP.

ENERGY:  

Maybe you've been out and about to run errands.  You're walking at a leisurely pace.  Your kid with CP is walking with you at the same speed you are, but they are huffing and puffing like they are running a marathon.

I have read that it takes people with CP three to five times more energy to do things than someone without CP.  Transcending CP's K describes this super well in a recent post A Walk in the Park (St. Louis Edition).  Needless to say, these statistics don't lie.  I'd even guess the energy we expend could be a bit higher than five times what a nondisabled person expends.

Keep in mind that even 'casual,' 'at your own pace' things still require energy.  (And remember that nothing saps us of our energy faster than cold.)  So provide your kid with lots of opportunities to take breaks and sit down.  (Standing still requires more energy than walking does for us.  So pausing for a 'standing break' will not feel like a break at all.)

I know a lot of things already take extra time, but you don't want your kid exhausted if they don't have to be, right?

STARTLE REFLEX:

Do you ever notice your kid with CP is extra jumpy in response to movement or noise?  It's a CP thing.

One of the toughest aspects of school as a child was having the other kids intentionally startle me because they thought it was funny.  This was at its worst when I was around nine years old.  One day, during lunch, someone got up from the table and the bench we were sitting on tipped back momentarily before righting itself.

I jumped.

All the kids laughed.

And for the rest of the year, I was on guard during lunch.  Scared to eat or drink anything, because I was waiting for the moment when one girl would inevitably tip the bench back and the whole table would burst into laughter.  The only thing worse than those girls triggering my Startle Reflex on purpose was spilling on myself in the process.

They had a way of scaring me that felt particularly mean-spirited.  Because they would go out of their way to convince me that they wouldn't do it today.  They'd attempt to get my guard down because they knew that was when my "jump" was the most intense, and, to them, the most funny.

[Image is: Me, at 7 years old.  I'm laughing, but I have both ears covered, in anticipation of being startled by noise.]

Often, when they scared me, I'd laugh, too.  (It was that or cry.)  But I'd also beg them to stop.

They didn't.  Because even at nine, other nine year olds didn't take me seriously.

As I share in the link above, it might look funny to other kids to see yours jump.  But it isn't the same as your run of the mill response to sudden noise.

Your child's heart will race.

They'll feel short of breath.

It will take them a long time to regulate themselves.  (Depending on the severity of the trigger, it can take up to an hour to calm down fully again.)  During this time, they'll feel tense and watchful.  Because what has actually been triggered is their fear response (what you feel when your life is at risk.)

Know that if your child with CP is coming to you, telling you that someone is "making them jump", this is what they mean.  It's hard on them.  And it's hard to concentrate on anything else when they are constantly worried about being startled by someone.

Take your child's words seriously about this and help impress upon people around them that scaring your kid with CP on purpose is not okay.

DEPTH-PERCEPTION:

Maybe you've noticed your kid is especially cautious on uneven ground.  Or maybe they appear not to notice the danger of a certain precipitous slant outdoors.

I've struggled when out and about for a variety of reasons.  But one of the big ones is an inability to assess depth.  I've been in situations where I'm sure there's a curb cut somewhere, but I just can't see it, because it appears as flat as the surrounding ground.

Once, on family vacation at sixteen, I thought I'd help them out by getting a head start out of a building in Washington DC.  All I saw before me was a vast expanse of flat sidewalk.  I had no way of knowing that it, in fact, slanted dangerously.  I ended up careening down it in my wheelchair, unable to stop myself (because I was going so fast, the friction of trying to stop actually burned my hands.)  My little brother spotted me, ran to catch me, and gently tipped my chair on its side to stop me from crashing.

I don't know for certain, but I'm pretty sure this is also a CP thing.  So keep an eye on your kids with CP on slanted ground, especially if they are in a chair.  Teach them to look for any other visual indicators that might help them find a curb cut, for example.  (Some have distinctive looks, or a feature, like bumps on the ground, or paint that's a different color, to distinguish it.)  Be explicit with your child if they are near a major slant, especially if they seem unaware of it.

PLACE-BLINDNESS:

Does your child have a hard time orienting themselves, especially at places they don't go every day?  Are they constantly asking you "Where?" when you tell them where to go?

Place-Blindness is defined as the inability to orient oneself in one's surroundings, as a result of focal brain damage.  Lots of us with CP struggle with constantly getting lost and being disoriented in public (a Target store or a restaurant, for example.)  Without significant landmarks, I find it almost impossible to navigate from place to place.  (You can read more about Place Blindness and CP at the link.)

Know that your child is not trying to be difficult and remember that CP is the result of brain damage.  Our disorientation when out in public or when driving isn't meant to frustrate you.  And we are not faking it.  We are just as frustrated as you are.

The best thing you can do is be patient and answer our questions as clearly as you can, even if they seem obvious to you.

MATHEMATICS DIFFICULTY:

Does your child with CP struggle particularly in math classes?  Are there concepts they simply cannot grasp, or maybe, ones that they can grasp they need significantly more time to make sense of?

This is really common among people with CP.  Most people I know with it do struggle with math, on a more major level than the average person.

For example, I always have been able to read and write well.  I tested a couple years ahead of my age in both of those subjects, but tested at a sixth grade level in math, as a high school sophomore.  This isn't because I wasn't trying.  I was.  Math just didn't compute for me most of the time.  While I did okay with basic addition and multiplication, even basic subtraction and division can still give me trouble.

If your child struggles in this area, reassure them they are not alone.  Understand they may need extra time to grasp mathematics concepts.  It may help, also, to encourage them to ask a friend in class to try explaining a concept to them.  When a teacher's explanation failed to click in my brain, once in a while, hearing a friend explain it simpler, or differently, would make sense.

Know there may be some things they simply can't do.  (For me, this was using a protractor in high school geometry.)  I understood how, but the spasticity in my right hand made it impossible use.  I talked to my teacher at the time, and showed him my difficulty, while assuring him that I understood how the protractor was used.  He understood and didn't dock my grade for this.  Math difficulties can spill over into other areas like science classes, too.

My junior year of high school, I only passed math because I took the lowest level course there was, and there was a retake option on all the tests.  I failed every test in that class the first time I took it, no matter how I studied.  But something clicked when I was tested on the material a second time, and I was able to pass the class with about a C.  Most people don't know that my difficulties with math were a big reason I didn't complete college.  I simply could not make sense of the math even in the lowest-level college course.  (And the one I tested into.)  My major required math.  The test to get into my major required math.

Be patient, and make sure your child knows they are smart, and that struggling in math doesn't take that away.

I hope this post gives you a closer look at some of the invisible aspects of CP your child might deal with.  And even if your child does not have CP, be aware that there could be aspects of their disabilities that they can't yet explain to you.  Talk to adults that share your child's diagnosis to get an idea of common areas where your child could struggle.

It will help your child so much to know they are not alone.

All About CP and Me is a free eBook that talks about what it's like to have CP in a way that is not scary or alienating.  Feel free to read with your kids or grandkids.

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NOTE:  If you would like to share this post with your child's PT, teacher, other caregiver, etc, you are welcome to link them directly to this post via email or other social media.  All I ask is if you print a hard copy, that the website (http://toniasays.blogspot.com) is visible somewhere on the printout, so it's obvious where the content originated, and that you print from this page only. Please do not copy/paste.  Thanks so much to those who have asked.

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