Our Challenges are Invisible (and why that’s extra tricky)

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Xray from 2015, 3 surgeries ago. The toe screw made its way out already…ouch.

Hey Team!

Before we start, I want to invite you to join our Fall 2021 Sundays with Sarah Student Groups. These groups will empower kids with strategies to use right away to save their grades, study effectively, and change their experience at school. Groups also include parent time to learn how to coach and support your kid! Your kids are too smart to have low grades or decent grades that come at the price of their happiness. I’d be honored to teach you a better way! Sarahkesty.com/groups has the details. We start November 7th!

This episode is going to be a little different. Instead of strategies, I want to share perspective with you. I want you to come away from this episode validated, motivated, and ticked off just enough that you’ll want to change the way things are. Because raising, teaching, or being a human is tough…layer in a disability or learning challenge, and you’re talking level 11 tough.

Some of you already know that while my passion is for people with executive function needs, my own experience is with physical limitations. I have a neurological condition called Charcot Marie Tooth. Charcot-Marie-Tooth is a neurological condition in which my body attacks the covering of my nerves, causing pain, nerve death, and muscle and coordination challenges. This disease is mostly invisible. When I’m in lots of pain, you can see me limp a little. Or you can see my disease after I have surgery (11 on my right foot so far). But, on most days, you can’t see my struggle. You can’t see that I had to switch my clothes three times to sort-of match the dorky, supportive shoes that my feet demanded that morning. You can’t see the three Band-Aids and a piece of tape that it took to get my feet okay in said shoes. And you can’t see the two screws still inside my foot, one of which has broken into three pieces. My disability, much like our kids’, is invisible.

I also just recently broke my foot. And, just like brain challenges showing up differently day to day, hour to  hour, my pain is unpredictable and irregular. Some days I stare at the clunky boot I have to wear and wonder if it’s more a costume than a tool, the pain being its usual daily 4 or 5. Other days, my stomach is knotted in reaction to a pain that is akin to having my foot bashed in with a lava-hot rock covered in barbed wire and salt. Because my nerve are dying, the ride they take me on is sometimes intense and other time unremarkable. It’s a parallel to the brain experiences of kids with executive function issues. Some days, things go right, they can focus, seem engaged, and remember their strategies to play the student game. Other days, though, their brains can betray them and they’re distracted, restless, and forgetful. Same kid on the outside but a very different internal experience.

When I was in school, I obsessed over becoming just like the “perfect kids.” But, I certainly couldn’t run like they did—with my funky little feet—and doing a cartwheel was more like a fumbling, sideways somersault, if that. My class would have to sit on the grass waiting for me to finish the mile run, and, let me tell you, having 34 kids watch you struggle is embarrassing and lonely. I felt I was the only one with a problem, and I spent a lot of brain energy trying to crack the code and overcome a disability that I didn’t understand. My mom would hug me and assure that everyone had something, and I tried hard to believe her. (Years later, I’d realize that this message helped my students so much that I turned it into a book! Thanks, little momma!)

Having an invisible struggle like weak executive function can feel so very lonely. Chances are your kid has wondered to himself why school is so hard, if he’s not dumb? Your kid has likely asked herself what’s wrong with her brain that she can’t remember to turn in the homework she worked so hard to finish. You may have even had the heart-breaking meltdowns where your child just succumbs to the difficulties, taking on the labels that others may have passed around, like “I’m stupid” or “I’m lazy.” When a challenge is invisible (but so very real on the neurological level!) and inconsistent, it can feel like a personal or moral failing. People with EF struggles often wonder if they really have these brain differences and occasionally accuse themselves of making all of it up.

Of course, we know this to be patently false. ADHD, autism, twice-exceptionalism, emotional dysregulation… these are real biological conditions with scientific evidence to support their existence. I encourage you to check out some of the ADHD-Awareness Month information on these brain differences and the proof of their impact in the brain. Not only is it fascinating, but knowing these facts can arm you with smart retorts when you’re faced with a nay-sayer or disbeliever. I’ll link in the show notes, of course.

When I started teaching 17 years ago, I had a parent lament that the parents of students with visible disabilities—ones with outward, physical markers—were so much luckier. She went on to explain that because her son “appeared” normal, strangers, friends, and family expected him to act the way they thought he should, at any given age. When he didn’t meet their expectations, they shunned him. They judged him. They should’ed all over him. Because they couldn’t see what was behind his struggles—the brain chemicals that created troubling thoughts and behaviors, in his case.

Our kids and we adults who struggle with executive function are often in a social bind. We appear to be the age of our biological body, and so it’s assumed that our brains will be pumping out the expected neurotransmitters to perform all the age-expected things. When we can’t do these things (without strategies, meds, or support), then the assumption is that we are choosing to fail.

Pause. Who chooses to fail? Really? Who gets up in the morning and proclaims that today will suck?

It’s much easier when we can see the difficulties. We certainly wouldn’t accuse someone who uses a wheelchair to get around or who has a prosthetic limb of faking their condition. We wouldn’t shame them or assert that they could walk or run without support if they worked hard enough or weren’t so lazy. I feel like a jerk even saying that right now.

Then why are we, as a society, still okay with treating those with invisible challenges this way? Telling a kid with ADHD to just focus harder follows the same jerky, misguided line of thinking that one would if they verbally abused someone with a visible physical disability. It’s not ok, yet it persists.

So, what do we do? How do we transform the way we think about treat ourselves and our kids who have invisible and very real challenges?

We start with our own brains. We learn. We challenge our own assumptions and change when we’re wrong. We adopt mantras like, “It’s not personal” to guide our reactions to others’ challenges. We team up as detectives looking for strategies, rather than blaming the person who is struggling.

You listen to this show because you know someone with executive function needs. You may be that someone, be raising or teaching that someone, be married to that someone…or all of the above. Today’s the day you take your strategies and level up your thinking.

You can do so in your brain or on paper. All at once, or a little at a time. There’s no wrong way to examine your approach to invisible struggles.

Here are some things to ask yourself:

What’s the “behavior” that I notice or don’t like?

What’s an assumption I’m making about it? (It’s because he doesn’t care…he didn’t listen…he knows I’ll do it for him…He’ll never be able to…)

What are some other ways to see the “behavior?”

What is a skill, that if the person learned it, would help them change the behavior?

Bonus question: What are some of the brain differences that could be contributing to the problem?

Be sure to check out today’s show notes so you can see the questions and all of the resources that I’ll link there. Nerd alert: It’s going to be a rabbit hole of research!

I’m also going to leave a discount code for registering for the 2021 International Conference on ADHD. Even if ADHD is not the thing that brought you to the show, there will be so much information and inspiration on executive function, that it will be well-worth it! My co-author and great friend, Dr Kirsten Milliken and I will be hosting a jeopardy game on Thursday during the conference, too!

Lastly, if you’re ready for some help with your child’s executive function, check out our group opportunities at sarahkesty.com/groups. They start soon!

Alright, time for this week’s pep talk. And I can’t guarantee this one won’t make me cry, so heads up.

Hey Kid!

Your grown up and I just went deep. We talked about invisible challenges and how they can make life so tricky at times. I shared my story a little bit with them, so I’ll tell you, too.

I was born with a nerve disease that changes the way my nerves talk throughout my body. You might have some differences in the way your nerves “talk” in your brain, causing challenges with focus, organization, dealing with time…you know the drill.

My nerve disease kills the covering on my nerves, which causes pain and some bone and structure changes to my feet and hands. I’ve had a few surgeries to deal with some of this (I even have broken screws still in my foot!), but mostly, my struggle is invisible to others. You can’t really tell from the outside that I’m in constant pain or that my nerves are dying. You can’t see that I had to put on loads of bandaids to get my toes to be okay in shoes that day.

People sometimes look at me and think I’m being lazy because I don’t want to walk on my painful feet. I bet grown ups or other kids have said that you’re lazy at times, too. Maybe you’ve even said it about yourself? But, today I want to remind you that you didn’t choose your challenges. You have invisible differences in your brain that make studenting pretty hard at times.

When I was in school, the teachers thought the only fair way to do things was to make us all do the same thing. So, I had to run the mile, even when just walking hurt me. It also meant that my class had to sit and wait for me to finish because my teachers couldn’t just leave me outside. Talk about embarrassing. My heart still kind of hurts when I think about it.

I bet you go through times like these too, where teachers think you must do something because they make all the other kids do it. Or, maybe you’re forced to use all of your brainpower just to stop your wandering brain so when they ask you to answer a question you haven’t yet caught up to what the question meant?

 Grown ups can’t see your invisible struggle. They might get the wrong idea that you’re not trying or you’re lazy or you don’t care. Your brain might be pretty good some days and tougher other days, making you feel like maybe the grown ups are right about you. (They’re not, by the way)

Having an invisible struggle is hard. You can give yourself reminders that you’re doing your best and that some days your best will look different. You can use self-talk to say that your brain is different, not broken. You can be a detective with your grownups, looking for strategies that will help.

I’m so, so on your team, kid. I get it. This isn’t an easy journey you’re on. But, you’ve got me, you’ve got your grownups, and you’ve got an invisible team of people just like you who believe you, believe in you, and who are fighting hard to make this world kinder for everyone.

Be kind to yourself this week, kid. And remember, everyone has something.

All my love,

Sarah