Month: August 2018

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THE WONKY PLACE: PART 2

 Just to recap, the wonky place is what Buddha calls his episodes. An episode is an uncontrollable moment of anger or sadness. It can last 5 minutes or it could last 45 minutes. Unfortunately, when a child goes into his/her episode there is not too much you can do except keep them and others safe. Which looks different depending on the types of episodes they have. Some kids are more verbal, while others are physical.

I first learned about episodes/crisis while getting my master’s degree in special education. However, all children, despite their disabilities or abilities, can demonstrate moments of high emotions.

STEPS TO REACTING TO YOUR CHILD DURING A CRISIS/EPISODE:

  •  Check yourself- How are you feeling? Are you in a good place to speak to your child? Are you angry already? Do you want to yell? If the answer is YES then ask someone else to tag in. I know it seems silly, but the best way to de-escalate your child is if you are in a calm mood. And be honest. It’s ok if you’re angry or annoyed, that is totally normal! As a teacher, there were many times I asked another teacher to step in and take over. So if possible, tag another person in when you’re home.
  • How are they- After deciding you are in a good place to deal with negative behaviors (i.e. you don’t want to rip their head off). Ask yourself what is going on with my child? Are they hurt? Are they hungry? Are they tired? Do they NEED something? Do they WANT something?
  • What’s going on around- Next, take a moment to look around you. What do you see? Are there loud noises coming from somewhere? Is it cold or really hot? Are there people around that could be frustrating your child? Is it too bright?
  • How can I help- The last thing to think about is what ways you can help your child. Do they need you to verbally calm them down? Do they need a tight hug or some soothing music? Do they need food? Do they need to change? There could be a number of ways you can help your child so trust yourself in choosing. If one thing doesn’t help, try something else.

The most important step and usually the most overlooked is to check yourself. If you are frustrated or angry that is TOTALLY fine and understandable. But, try not to deal with the situation if you are. TAP OUT. Think wrestling- when they’re tired and know they can’t beat their component they tap out to someone else. It’s not as easy. It takes some time to master. I remember the first 6 months of teaching I wanted to be the one that got my students out of their crisis/episode, but once I figured out that the crisis would last much shorter and less dramatic if someone else stepped in. Remember you’re not giving up and it’s not that you’re not capable of doing it, it’s just not the right time.

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SUMMER

This summer has been great! No.. it has been AMAZING! Not only have I been able to do personalized academic work with Buddha, but we’ve had so much fun. The pressure of school was off, but the schedules and point systems stayed in place. Buddha received a weekly schedule every Monday and a daily schedule every morning. We read every day, did math and typing at least twice a week and tried to incorporate science at least once a week. We took trips to the beach, we played in the park, he even went to baseball camp! It was truly a wonderful summer.

Since school starts in one week, I thought it would be a great time to discuss incorporating academics into fun activities so your kids can have a great time and still learn/ practice their skills.

Ways to incorporate academics and social skills (which are just as important as academics) into fun activities:

Fun Activity Academic/Social skills to practice
Going to the Beach Social Studies- Reading a Map

·      Print out a map of the beach

·      Ask your kids to mark all the places he/she wants to go to

·      Have them figure out which order you should do things based on the map (i.e. first get snacks, then go to the beach)

·      Have them make a to-do list

Math- multiplication/algebra

·      Figure out how long the trip to the beach will take driving (i.e. its 50 miles away and you can go 60mph the whole way. How long will it take to get there?)

 
Playing in a park Following multi-step directions:

·      Give a list of 5 things they have to do in a row and see if they can follow it in the same order without you repeating yourself)

·      Practice using a timer (i.e. ask- how long does it take to go over the monkey bars? How long did it take the second time? Which time was faster and why?)
Playing a board game Math- data collection

·      Ask your children to take data on how many times everyone is winning by making a graph

·      See if there is a pattern. Is someone winning more than the others?

·      Use the data to make guesses on who will win next.
Going to the pool Social skills practice

·      Have them practice introducing themselves

·      Practice ‘please’ and ‘thank you’

·      Work on taking turns (i.e. first let your sister play with the ball then you can)

·      Practice being a good team member by playing games with friends and cheering them on as well.

 

While you might have already been doing these things, it’s important to point them out and continue doing them. I’ve met children that have no idea how to introduce themselves or children that cannot connect math to real-life problems, so start early! Incorporate what they’re learning into daily activities and remember… Have fun!

I hope you all had as wonderful a summer as I have! If you need any help before the school years starts with graphs, charts or just in need of advice, feel free to contact me at alexscardapane@gmail.com It’s important to start off the school year right!

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Tone.

Everyone’s spiritual journey is perfect. At least according to Deepak and Oprah. I guess it’s true, I certainly like to think so. God knows I’m always looking for answers to explain life’s pain.

Though my spirit has pockets of doubt, there is something about its journey I am certain. My trip is largely made up of tonal experiences. I am body and soul.

Tone, for me, is everything. it guides me, shapes me, and alerts me to the dangers of the world. Maybe more than it should, but for me, it’s a center point around which I can more confidently live.

Tone dictates how a message is conveyed and it determines how I am perceived. We live in community with ourselves, with each other, with our thoughts, with our pain, and our joy. Tone will always decide on which side of the emotional coin we land.

Here’s the catch. There is no pure tone. There is pure heart, spirit, essence, intention, however, we name it, but there is no pure tone. At least none we can take in with traditional anatomy. We hear and see subjectivity with perception. We feel frequency and sense intention.

We don’t hear ourselves in the same tone that others hear us, or as, say a microphone does. We don’t see ourselves as others do, as a camera does, as does a mirror. But, without a device to filter our tones, whether that be awareness, lessons, feedback, or a simple app, we can not get an idea of the tone of our messages. We can not really know how we live in community with each other or with ourselves, how we hear or see our own tone without a bounce back. Without a reflection.

We’ll never experience ourselves as others do. And that’s OK. I guess I just wish we could all pay a bit more attention to our tone.

I have spent most of my life listening to, analyzing, considering and teaching tone. It’s my job. It’s an organic part of how I live and witness the world. First, I was a professional child of emotional trauma, subconsciously attuned to the intonation of those around me in order to gauge if I needed to be afraid or not. Afraid for my heart or my person. And then, as a student, performer, and teacher of voice, dance, and acting, I honed my skills. Because tone is not only audible but physical and visual, I wanted total immersion into the sensations of tone. I thought it might make me feel a little safer, help me understand others and find a connection with them. As I amplified these skills, I began to understand them. But the answers unraveled more questions, leading me down an endless depth of listening that I continue to explore, I must continue to fine tune their meaning, their placement, their inception. That is how I feel my place in the world, that is how I know to trust, to love, to let go, and to run or to fight.

I have been a teacher of these arts longer than I’ve been an emotionally well-balanced person. I know that sounds dramatic and a bit gothic, but my point isn’t to spotlight my emotional journey as much as it is to give a foundational background in my experience with tone. I have listened on many frequencies and heard from many perspectives, and that gives me an interesting point of view, if not an expert one.

I am careful not to manipulate tone because it is ultimately important to me to be as authentic as possible. Except, of course, for the scary times when authentic is an honesty I can not bear to endure and I try to hide, to make up, to change the script, the image, the sound. My mind says, run and hide, protect yourself. By my damn heart has a mind of its own and is determined to pin me to what is real, even if I don’t want to be exposed to it’s tone. So, the times of new social encounters, doctors appointments, conversations about money with my husband, a conflict between myself and a mom of one my son’s friends,  IEP meetings, Psychiatry appointments? These are moments try to manipulate my tone so that I am heard and taken seriously. I am not always cared for in these moments, and that is hard for me.  But if I can’t be cared for, then I try to be heard.

I am rarely successful at this. As usual, my heart betrays my mind and my fear comes riding out on a black horse draped in defenses, kicking up weaknesses with every stride. My pulse races, my speech flutters in fits and spurts, my breath is rapid and gives me away.

My tone can not be missed.

If my spiritual journey is, in fact, perfect but still tone essential, then it all goes back to the balance of not caring what other’s think of me while still being aware of the frequency they’re sending out, and finding comfort where there is none to be given.

Inside myself. It all goes back to the tone I use toward myself.

For me, it always goes back to tone.

 

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PART 1: THE WONKY PLACE

When I started working with Buddha he had these moments that we would call “episodes”. Basically, they were flashes of uncontrollable anger and/or sadness. Buddha decided to name the episodes the “wonky place”.

A lot of my students, most of whom had emotional disorder or autism, portrayed the same rollercoaster of emotions. However, in school, we would call these moments a crisis.

Unfortunately, once an episode starts, you usually have to wait until the child rides out the emotion, which can be REALLY challenging. Especially since the child can become verbally and physically abusive.

What they look like:

It is important to know that all episodes/crisis look different depending on the child. However, bellow is a list of things that I have seen both my students and Buddha do during an episode.

  • Biting
  • Spitting
  • Kicking
  • Hitting
  • Scratching
  • Throwing objects at both you and the wall
  • Cursing
  • Threatening
  • Crying

I have seen students do all of those things to themselves and to others. While the behavior is not ok, you have to realize that it sometimes cannot be controlled. I hope that by reading this list you can both relate and understand that you are NOT ALONE. That it is NOT your fault when your child portrays those actions and that 99% of the time it is NOT personal, no matter how specific they are.

How they start:

Something simple could set any child off. Below is simply a list of examples that I have personally seen set a child off.

  • Asking them to do a task they don’t feel like doing
  • Asking them to do a task they don’t know how to do
  • Transitioning from one thing to another (usually something fun to work)
  • A change in the schedule
  • Something changes about their routine (i.e. asked to eat breakfast before getting dressed)
  • Not giving them attention/ ignoring them
  • Raising your voice at them
  • Asking them to stop something they do not want to stop
  • It could also be medical:
    • Medicine could be too strong or wearing off
    • They could be overly tired
    • They might be experiencing something in their body that they can not explain
    • Their heart rate might be going up
    • They are in pain

 

Again, an episode is simply a moment of uncontrollable emotions that some children experience. Remember the word uncontrollable, because even though it seems like they are in control, they usually are not. It is important to know that it will pass. And the most important take away is that it is NOT YOUR FAULT. Never blame yourself or your child. They are on a roller coaster so you can ride with them or watch from the side. Either way, you must let them ride it out.

 

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A Med for You. A Med for You. A Med for You.

We are no stranger to meds.

Want to know how anti-epileptics work? Give us a call.

Want to know how they metabolize in children? Yeah, we’re pretty much experts in that.

Want to know about reflux and constipation, cramps, and how to mitigate all versions of pukiness? We’re your go-to family.

Want to know which meds have a short half-life or a long half-life? Just ask us.

Want to know how anti-epileptic meds interact with each other? Done.

Want to know about adverse side effects? Here let me show you the book I’ve written on the subject. It comes with pictures and stories and a vial of endless tears.

Want to know about mood stabilizers?

Oh, wait. Gimme a minute, we’re just getting to that one.

For almost a year, we’ve been trying to decide between an antidepressant, a stimulant, or an anti-anxiety med…for my eight-year-old.

It’s taken four years of growth and mental development, anti-epileptic trials, and countless Vanderbilt tests to try and flesh out if Buddha’s behavior and emotional IQ is rooted in epilepsy, ADHD, anxiety, depression, or side effects from his anti-epileptics. It’s impossible. Because of course, it’s probably all of the above.

The question is, what do we medicate and what do we leave alone?

I told Buddha’s psychiatrist, “I just want to make his life easier”.  “I just want it to not be so hard for him to get through the day. And we’re at a point now where the tricks and tools aren’t enough.”

We have so many tricks on hand to make his life easier we should have a Vegas Show, and I should be walking around in sequence, Vanna Whiting all over the place with Dave pulling rabbits out of hats. Seriously, we will try almost anything to ease this kid’s daily challenges. And we have some damn good tricks.

Meds are serious. But so is mental health, and we are performing our due diligence. We have been considering these mood meds for almost a year. For our eight-year-old! We’ve been collecting data, weighing the pros and cons, and consulting other parents. We have monthly follow-up appointments with his neurologist, his psychiatrist, and his psychologist to talk through the options. We are trying to foresee all outlier possibilities and be aware of all the pitfalls. Mostly, we just want him to have it a little easier. Isn’t it enough that he seizes every day?

Until recently I didn’t think there would ever be a scenario in which we would add one more med to this poor kids’ already overloaded system. But then, of course, life is harder at some moments than others and answers can present themselves before the questions have fully formed. So when second grade with more demands and fewer friends happened, developmental stepping stones ramped up, a new antiepileptic drug with major adverse side effects was tried and tried again, we started to open our minds to the idea. Then three trips to the ER, one admission, and one intervention in which they spoke of taking him to the psych ward…or whatever they call it nowadays, hit us over the span of just a few months we were more than ready to pull those magic mood shifters out of a hat.

It’s hard enough to diagnose ADHD, anxiety, or depression in children, but add epilepsy and four other meds into the mix and it’s a downright, ‘your guess is as good as mine, let’s just try it and see how it goes’, Frankenstein experiment.

On an eight-year-old!! My eight-year-old!!

The cruel irony is that it’s very common for kids with neurological disorders to suffer from other neurological disorders. I guess it all goes hand in hand, or synapse to synapse, as the case may be.

So, here we are. Lit up for the world to see on a stage I could never previously imagine standing, and I have stood on many many stages. We’ve hit our mark and we’re getting ready to experiment again in the hopes that this time we might create a life without thoughts of death, high-cost impulsivity, or major emotional dysregulation. Mostly though, we don’t dream that high anymore. Mostly, we just want to ease his challenges and help him get through the day with some moments of emotional freedom that aren’t scheduled, measured, timed, or earned.

So, we’re waiting to check a few more boxes before we add another bottle to the already filled pill drawer, and then we’ll capture some lightning and flash it through the audience to see what we get.

Please hold, for Act II.

 

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To-Do List or Not To-Do List…Do!

I used to hate making to-do lists. Oh sure, I loved the promise of a job well done, the enticement of items ticked off and completed. I’m a sucker for success. But I hated the pressure I felt from the ominous list of shoulds. I should be doing this, I should be doing that. Oh crap, I forgot what I was doing and now I’m not doing what I should be doing. Or, what the hell was I supposed to be doing and where did I put that damn list? Etc. I hated feeling like I was being directed by an omnipotent, bossy list that I was also responsible for creating. Hell, I can’t remember why I come into a room most of the time, how am I supposed to be responsible for breaking down big goals into doable steps each day? I clearly did not think I was up to that level that of accountability.
Because I don’t like to fail I would save myself the shame of guilt and regret by simply not writing a list to begin with. Then those judgey unchecked “done” boxes could never get the best of me. Ha! Yeah, ha. Jokes on me.
I used to think it was because I was a free spirit who did her best work in the moment. Organic and impulsive is when I’m at my peak. Or so I thought. I liked the panic of crunch time, the impending doom of missing my mark. That’s when I felt most empowered. Yes, I was ultra productive when I pushed it to the last minutes, reacting off of pressure rather than planning. Picking the red or blue wire with my career and self-esteem seemingly riding on the line led me the to success and an awesome high. Or so I believed.
But that risk got too high when my son’s wellbeing was on the line. And now I see how the risk was too high for my wellbeing too. I see now, in my chronic disease wisdom world, that if maybe I got lucky and paid the bills or did the laundry, or even ran a business without a list, I never really got to everything I needed to or dreamed of. I never really gave life my all.
I never saw what I was missing until epilepsy. I didn’t see the limits I was fabricating until real-life limits slammed down hard and stopped us in our tracks. That’s when I realized how deep my history of self-sabotage goes. That’s when I was afforded a new perspective and able to look honestly at how powerful I actually am. I was able to own that making the choice to set steps for the day is not a trap but a liberation.
Funny how making a to-do list is kind of the same thing as setting an intention. Setting your dreams, your goals in motion.
No wonder I hated them. They are always unfinished.
But now I know how tenuous life is. I don’t mean the created soap operas I like to create I mean real life actually ending. For real.
So now I know, in my bones, in my cells, in my heart and in my mind, life is always unfinished. It’s not about what you don’t get done, it’s about what you do! It’s how you chose to live that matters. And it is our choice how we want to live, even if epilepsy isn’t.
Life has a funny way of making you face yourself. And when it came down to actual life or death for my son, I wasn’t going to fail!  It first I had to admit I couldn’t do it alone. That took about a year. Then we had to find Alex. That took almost six months. But then, I knew I could survive and I was open to anything! And that’s when I awakened to the magic of a to-do list. That’s when I awakened to the power of choice.
And now my life and Buddha’s life is better. In a way, it’s better than ever. We’ve reached heights we didn’t dare dream for. He hits milestones previously out of reach and we celebrate them as never before. No, they are not typical milestones but they are magnificent. And they count! He is self-aware and responsible and he is more confident than ever. And our days? Oh! They are so much better. So much less stressful. There is less crying, less reacting, less anger, less fear. Our days are so much more fulfilled.
In a way, we owe it all to the to-do lists. In a way, they helped save us. I realized, by the grace of God and the indemnifiable Alex, that is wasn’t to-lists that weren’t working for me. It was me that wasn’t working for the to-do list. And now our life is working for what matters. Living!