Energy Drainers for Kids with Special Needs - The Mobility Resource

As an enthusiastic fan of the spoon theory, I often refer people to this idea when trying to explain my son’s challenges as a person with a disability. For those of you who are not familiar with the spoon theory, you should definitely check it out.  I think it is an excellent descriptor of what it’s like for an adult to live with a health challenge or disability.  While I am very respectful of the spoon theory in describing the adult experience, I feel that it doesn’t do justice to a child’s experience of living with a disability, a mental health challenge, and/or a physical health issue.  The spoon theory refers often to the choices that adults who are living with an illness are forced to make with the limited physical and mental energy that they have available.  However, I feel that for children many of those choices are made for them by adults or are made impulsively by the child without considering the long-term effects of those decisions.

So with that in mind, I would like to propose a child version of the Spoon Theory, and since it’s a child’s version, I chose a video-game analogy for this theory.  I want you to pretend that you are a child with a physical disability, a mental health challenge or some other medical diagnosis.  You might pretend that you are a child who has ADHD, cerebral palsy, autism, epilepsy or leukemia, or like so many of these children, a combination of several different challenges.

I’m going to walk you through a fictional day in the life of a 10 year old child who has cerebral palsy, ADHD, epilepsy and a bleeding disorder.  Since this is my son’s constellation of challenges, I can speak pretty confidently about his challenges and day to day routine.  However, I think that the theory can adapt pretty easily to a variety of different challenges that kids may face.

Now let’s take our pretend skills up a notch.  I want you to pretend that you are this child, and you wake up one morning and you notice that you are a pixelated video game character. How odd you think to yourself, but since you’re a kiddo, mostly you just think it’s kind of cool to be in a video game! You look up and you notice ten energy bars floating above your head. As a video game aficionado, you realize that these energy bars are your lives for the game, or the day, as the case may be.  Sweet, ten lives is a lot for a video game. This is going to be awesome!

You get out of bed, get a shower and get dressed without too much difficulty. You’re tired because one of your medications makes it hard for you to fall asleep and you were up really late again last night, but you’re used to being tired.

Your mom asks what you want for breakfast. This turns out to be a difficult decision because your appetite has been affected by another medication and you’re really not very hungry most of the time. You decide on a banana and manage to eat a little more than half.  Between being tired and not getting enough to eat for breakfast, you notice one of your energy bars flicker and go out.

Mom helps you get your shoes and braces on and rushes you out the door so you won’t miss the bus.  Then you remember you didn’t take your pills, you quickly throw back your ten morning pills and watch the bus roll by without you.

Still nine energy bars left.

You get to homeroom late due to the medication debacle and missed the instructions for the writing prompt.  It already takes you three times longer than your classmates to write anything and now you’re behind even more.  Your attentional challenges make it difficult to get started and you’ve only got a couple of words on the paper when the bell rings to go to the next class… you put the paper in your folder to bring home for homework as you notice you’re now down to eight energy bars.  You fumble and fuss with your binder, folders and notebooks, fine motor challenges make it hard to work the zippers and get the papers put away neatly.  Everyone else is out the door before you’re even packed up.

You rush to your next class and take a seat just before the bell rings.  Everyone is chatting as the teacher is getting ready to start class.  You join in a conversation with some kids sitting near you. Your attempts to join the conversation are awkward and greeted by confused looks or nasty comments by the other children.

To make matters worse, you don’t pick up on the teacher’s cue that she is ready to start class and you keep up the chatter until the teacher has to tell you to “be quiet!” The other children snicker and, embarrassed, you see another energy bar disappear, leaving you with seven left.  That is until homework is being collected, the homework that you worked so hard to finish last night and then left sitting on the kitchen table. There goes another energy bar.

You switch classes again, arriving to math class with six energy bars.  Math is a tricky subject, you understand the concepts but it takes you so much longer to process information than your classmates.  You get one math problem done in the time it takes your classmates to complete three or four. You forget what you were doing and have to go back to the start over and over again, it’s pretty frustrating. This process is a significant drain on your mental energy and you notice that every math question you finish exhausts one of your energy bars.  Luckily or unluckily, as the case may be, you only got three questions done, leaving you with three energy bars floating over your head.

Finally, it’s lunch time, they’re having your favorite today and your appetite has perked up a bit so you manage to eat a decent lunch.  You have a good group of friends you sit with and you enjoy the break to hang out with your friends.  As the bell rings to return to class, you see an energy bar that had gone out, has lit back up again.  Awesome, you’re starting the afternoon with four energy bars.

Next its music class, you play the French horn and you really enjoy it, but the motor planning is challenging and takes more energy for you than most of the kids in your class.  Same goes for gym class later in the day, each one costs you another of your now rather precious energy bars.  You only have two energy bars left and you’re still at school for another hour.

Luckily the last class of the day is science and it’s one of your favorites.  While you enjoy science class, keeping up with the writing demands is exhausting.  Back to that motor planning issue along with slow processing speed and fine motor difficulties.  You’re trying to remember what the teacher said two sentences ago and write it down as she’s still talking.  You’re so far behind you know you can’t possibly catch up and you get discouraged. Writing was hard when you first got to school in the morning, but by this time of the day it’s exhausting. This costs you another energy bar and you head off to catch the bus to go home with one bar left.

See Also: 7 Confessions of a Special Needs Mom

The trip home was uneventful and once you get a snack you’re starting to feel a bit better.  You have the whole night ahead of you to relax, watch TV and play some video games.  It’s going to be a good night.  Mom asks how your day was and you tell her it was “fine” as always.  She remarks that you look tired.  At this point mom reminds you that you have horseback riding therapy after dinner.  Oh man, you love riding your horse, but that puts a serious damper on your relaxing night plans.  You groan and mom scolds you for complaining.  Uh oh, your last energy bar starts to flicker! Then she hits you with the mother of all questions, “what do you have for homework?” Oh no! That writing prompt you didn’t get finished, almost all of your math questions, writing up a science lab and practicing your spelling words.  Mom gets right into her “encouraging” mode since she knows you have to be done in time to get to your appointment.

Within 15 minutes of working on math problems your last energy bar fades away.  But that doesn’t mean you get to be done, you still have to finish all this work and go to therapy.  A few minutes later, you start kicking the table, then you drop your pencil five times in a row, now you’re making noises for no reason that are disrupting everyone else in the house.  Mom yells at you to “cut it out and just get your work done, you have to leave in an hour and you haven’t even had dinner.” That’s it, you lose it, screaming, yelling, banging on things, until you’re sent to your room. You go to your room grudgingly, screaming and carrying on the whole way.  This behavior continues for at least 10 minutes.  It’s exhausting, and you know that once you calm down you will probably have a headache, but you just don’t have control over yourself anymore.  Your mental and physical energy is completely spent, and this tantrum has left you with a negative balance.  You now have minus three energy bars floating above your head.

Once you’re calmed down, Mom helps you struggle through the rest of the homework.  You have one more outburst but you manage to reign it in pretty quickly, it still costs you another energy bar into the negative.  Running late as usual, you’re rushing out the door to your therapy appointment.  You pick up drive through junk food for dinner which is your favorite so you don’t understand why that takes away another energy bar! Therapy is fun, riding makes you feel good and you love your horse, but it’s still hard work and costs you another energy bar. You’re now at negative six bars.

It’s dark by the time you get home and already your bed time.  But you can’t go to bed yet because you need an infusion.  Dad mixes the medicine and Mom starts your IV and pushes the meds.  Then you take your pills and get ready for bed.  As you’re getting ready for bed you realize that you didn’t get to watch any TV, play any video games or do any of that fun stuff you had planned.  You ask your parents if you can play for a few minutes before bed and they say “no” because it’s already past your bedtime.  This disappointment puts you over the edge and a major meltdown ensues which costs you four more energy bars.

Exhausted, you fall into bed.  Mom snuggles with you, she holds you and tells you tomorrow will be a new day.  Dad hugs and kisses you and reads you a chapter of a book.  You’re feeling better now, but thanks to that medicine, you can’t fall asleep despite absolute mental, physical and emotional exhaustion.  You lay awake for a couple of hours and eventually fall asleep around midnight.   The few hours of sleep you get is not enough to recharge all ten of the negative energy bars you owe and refill your ten bars for tomorrow.  So you’ll be starting out tomorrow with only eight energy bars, but of course, no less to do to keep you busy.

I think the distinction between the spoon theory and the video game theory is control.  An adult can say,  “I don’t have enough energy left to get through this activity, I’m going to have to reserve some for later by choosing to cut another activity short,”  A child rarely has that option.  Nor do most children have the verbal skills to explain that they are mentally or physically spent.  And even if they did tell us that, would we say, “oh, ok, just skip homework tonight”? Most likely we would not.

It’s important to notice how our imaginary child deteriorates as the day progresses.  A mentally worn out child is pushed to do something they don’t have the energy to do (homework), which leads to a tantrum, the tantrum wears the child out even more, but of course provides nothing helpful. However, at this point the child is so worn out that another tantrum is almost inevitable.  It’s a vicious cycle with no easy way to end it. Somehow these tasks have to be completed, however, the child who is supposed to do them is already in an energy deficit.

Typical kids start out the day with an unending supply of energy bars floating above their heads.  They have more to spare at bedtime and wake up fully charged every morning.  Kids with disabilities or medical challenges don’t have that luxury.  Please be aware of the energy demands you are placing on these children.  Teachers, therapists and parents, please try your best to help them save at least one of their energy bars every day to spend on something fun.  Therapy, school, homework and chores are all important, but allowing these kids to spend a small amount of the precious energy that they are allotted daily so that they can just be a kid is awfully important too!

 

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