Monday, August 7, 2017

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

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting 

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.

***

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.

42 comments:

  1. TONIA. <3 This might be one of my most favorite posts of yours ever, and I love your posts, so that's saying something!! I love this, and can relate to nearly all of them. Did you see me nodding in fervent agreement re: gait testing not being especially difficult when someone's watching you?! I always felt (feel?) inadequate when a doctor or PT etc. is evaluating my gait because I never feel like it's an accurate representation of what's normal for me, and it's so hard to articulate that to medical professionals.

    I love, too, that you touched on a bunch of the factors that affect spasticity, because I feel like so many people don't understand that. And thank you for talking about depth perception and spatial issues - two things I definitely struggle with! Depth perception issues and visuospatial difficulties are such misunderstood and often overlooked aspects of CP...but the fact is, we need both our eyes to work together in order to have perfect depth perception, and it's really common for people with CP to have eyes that work independently of one another.

    Thank you thank you thank you!! LOVE this.

    ReplyDelete
    Replies
    1. K, OMG thank you for this comment. I love that this post resonated with you. I put a lot of thought into it and had to keep coming back to add whole sections (on Startle Reflex and Overflow) because those need to be discussed.

      And yes, spasticity is so complex and so hard to articulate, especially when it's impacting us. Hopefully this way, parents (and others like us) will have something to refer to that helps everything make sense a little more.

      <3 <3 <3 So glad you enjoyed!

      Delete
  2. LOVE THIS! Most of these apply to me perfectly! Especially the math problems and startle reflex(actually called "Moro Reflex"). I'v been horrid at math since 3rd grade. I was really slow moving in lab classes for science too. I noticed the difference in symptoms depending on emotion in people with stroke as well. One day they will appear to have almost no symptoms, the next day if angry or tired they will appear very spastic with a hand curled up and/or have very obvious nystagmus. Thank you for raising awareness of this since most people I know have never heard or startle reflex or know symptoms can be different on different days!

    ReplyDelete
    Replies
    1. Thanks, Margot. I do know the technical term for startle reflex but I call it that because I think it communicates more clearly what it is :)

      Delete
    2. Ah! I gotcha! Totally get it! You're welcome! Personally I prefer "Moro Reflex" because everybody has a startle reflex but ours is a step up from the usual startle and has a particular look. If I tell people to google "Moro Reflex" it helps them understand that my body is particularly alarmed at the concept of falling and why my arms and legs literally jolt out. To each's own. Both terms are entirely correct. I find deep breathing does wonders for getting my body to calm again. I'm sorry people made such as awful joke out of setting the reflex off. In my experience my startle reflex scares the crap out of people instead because mundane things like toasters set it off as if a bomb went off. Maybe they think I had a small seizure or am in severe pain…I don't know… In regards to the math issues I heard that people with the spastic diplegia type of CP are most likely to have math issues.

      Delete
    3. Margot, I didn't know that re: spastic diplegia and math issues! Interesting!

      Delete
    4. Yeah I thought it was interesting too. I heard it from a school councilor who knew the neurology behind it and they said people with spastic diplegia tend to have difficulties with understanding all visual spatial aspects of math and understanding number values, whereas someone with Athetoid CP or hemiplegia CP will tend to have other difficulties but not enough to be considered learning disabled in most cases.

      Delete
    5. Wow, I had no idea it varied.

      Delete
  3. I am so glad I came across this. As a mom of a child with CP, I can't say Thank You enough. I felt like you were describing my daughter in almost every way. I have always tried to point out some of these things to her teachers, both during her IEPs and pretty much whenever needed. I think most of the time they felt as though I was making excuses for her. When in reality I am trying to bring awareness.
    Again, thank you for articulating your normal, and my daughter's normal too, in such a way that anyone could comprehend.

    ReplyDelete
    Replies
    1. Cryss, Thanks so much for letting me know you found it! I hope it helps having this post as a resource.

      Delete
  4. This is great, I'm going to print this out for my son's school so they understand that his actions aren't always behavior.

    ReplyDelete
    Replies
    1. Mary, That is so great to hear. Often, kids with CP are blamed for things that just aren't in our control. I really hope this article helps your son not to be.

      Delete
  5. Thank you so much for this post! My daughter is 4, and although verbal she's not able to verbalize her feelings and thoughts very well so I've never really known how she feels, if she's in pain, or what her life with CP is like.

    ReplyDelete
    Replies
    1. Drew and Kristin, This post is an accurate description of what I experience. If you get to read other posts in the Parenting series, you'll see, too, that having CP is really normal for your daughter. Which is important to remember, too. Thanks for reading!

      Delete
  6. I hope you don't mind, but I'd love to share this with my daughter's (age 8) teachers. Thank you for this gift!

    ReplyDelete
    Replies
    1. You're welcome to print this out, or share a link directly to the post via email or social media. I hope it helps!

      Delete
    2. Thanks for asking. I'd just prefer if you print it that the blog site is visible somewhere - so it's clear where the content is from :)

      Delete
  7. I never realized the startle reflex was a CP thing until I started reading your blog. But I totally have it!

    ReplyDelete
    Replies
    1. Haha, well you're definitely not alone here! <3

      Delete
    2. One of my daughters consultants explained to me that the similarity is with a horse and peripheral vision. They can startle easily if you approach too suddenly. It's all good.x

      Delete
  8. Thank you for sharing this! What you describe regarding depth perception issues is most likely cortical vision impairment. It doesn't mean there is anything wrong with your eyes, but rather that your brain can't always process what your eyes are seeing. You can see a developmental or behavioral optometrist for this, and I would absolutely recommend it, because CVI can get better! With glasses (sometimes) and vision therapy, you can actually improve your vision! I wonder about the overflow piece, also. My son has something called mirror dystonia. When he intentionally moves one arm/ hand, the opposite arm/ hand mimics & does the same movement. This is because of how his brain "rerouted" around damaged areas, so the signals travel a different path. Often the leg on the same side tries to mimic a bit as well. We were so confused as to why he was "fisting" his hand sometimes but not at other times, or if it meant he was "tight," despite supposedly not having spasticity in his arms. It was so helpful to understand that while this is absolutely CP related and a real challenge for him, it is not spasticity related (phew!). I have quite a few pictures of his mirroring in action, if you'd like to see them! This is a really unique post & I'm so grateful that you shared it! Best wishes.

    ReplyDelete
    Replies
    1. Hi KBrady, I'm aware that the depth perception stuff is related to brain damage, but thanks! Glad you found this post helpful!

      Delete
  9. This is really helpful, thank you. For those with startle from noise, the Hyperacusis Foundation offers a pink noise CD that may help. Otherwise a low dose of Klonopin can reduce the startle. For math or reading, Lindamood Bell publications offer ways to visualize. Thanks again for the very comprehensive insight...it will help us all empathize with our children who cannot verbalize these sensations.

    ReplyDelete
    Replies
    1. No interest in meds/cures, but I am really glad you found this helpful!

      Delete
  10. Tonia,
    I am a grandmother of a 9 yr old Grandson with CP. I'm also a retired special education teacher of 30+ yrs. I began my career as a School Speech/Language Pathologist and transitioned into a Special Ed. Teacher. I then became a Reading Specialist but when James was born in 2007 I went back into teaching a Developmentally Delayed K-1 class. I realized that with all my expertise, I knew I had a steep learning curve when it came to dealing with the physical aspect of CP and how the lack of motor skills effects the learning process.
    Having said all this, your first hand experience & expertise would have been so helpful to me as a teacher AND Grandmother. I learned a lot by reading your post and I want to share it with my husband. With the best of intentions, he often mistakes some of James' reactions (the jump) are bad behavior. Your post will be coming from a third party as well as someone who actually HAS CP. You don't get more authentic than that!
    Great information, well written, informative, understandable without dumbing down, and practical! Thank you!

    ReplyDelete
  11. Hi Gmama Jane, Thank you so much for this comment. It really means a lot to me that you value your grandson's community, and it will only benefit him in the longrun to know that his grandma listens to people like him. If you have any further questions, please let me know, and feel free to read any of the other posts in the parenting (grandparenting) series. (I was raised by my great grandparents for a time as a child, so I really value that influence.)

    ReplyDelete
  12. As the grandmother of a CP grandson this made me cry. It was one of most useful? informative reminders in how to deal and be patient with these children. Absolutely brilliant! Bless you. With love.

    ReplyDelete
    Replies
    1. Thanks so much! It will mean a lot to your grandson that you are learning about him <3

      Delete
  13. This is awesome and I plan to use it for my own child's school. I see you are also in NZ! We very much need a better understanding of CP here and the effect on a child/adult.

    ReplyDelete
    Replies
    1. coolpinkgurl, I am so glad you can use this! (Though I'm sorry, you seem to have somehow been misinformed??? I'm not in NZ. But the understanding you speak of IS necessary where I live as well.) <3

      Delete
    2. Oh funny! The URL indicated nz :) yes, I think with cp most doctors say, oh well, it's not life threatening, so there is no drive to alleviate the symptoms.

      Delete
    3. I don't necessarily aim to have my symptoms alleviated personally. Basic understanding and respect for me (and those with CP) would go a long way.

      Delete
    4. Coolpinkgurl:

      Blogger has indicated country three-letter acronyms for the last five years.

      This is especially evident when people share blogs from other nations.

      Delete
    5. Interesting! I hadn't known that!

      Delete
  14. Hi Toniasays.blogspot.co.uk, thank you so much for this fabulous post. It has been educational, emotional and very enjoyable to read. My daughter is 5, a twin and has spastic diplegia, she is a trojan, a superstar and has more determination in her little finger than I have in the whole of my body. I have and always will, try to find a way for her to access all the opportunities that her sister has. I encourage and push her to achieve more and more. What your article has done is to give me some guidelines and some invaluable insight into what she feels and what is cp related. Honestly, I keep re reading to capture these light bulb moments over and over again. It is by far the most useful and informative article I have ever seen on it. So a huge thank you from the bottom of my heart. Eleanor Duffy Xxx

    ReplyDelete
    Replies
    1. Hi Ellieduffy, Thanks so much for the comment. I'm so glad this post helps. (And your daughter reminds me a lot of me! I'm a twin, too!)

      Delete
  15. That was really interesting. Thanks for that. You write very clearly. I got all the way to the end without even noticing! I don't know a lot about CP (I have a friend whose daughter has it, but in our house we deal with autism). So I just learned a lot in one go lol.

    ReplyDelete
    Replies
    1. Thanks so much, Karen! I know of a few blogs written by autistic kids that give great insight into what autism is like for them. If you are interested, search: Fox Talks With Letters, Rhemashope, i am in my head, and Faith Hope and Love with Autism.

      Delete