Tag: special needs communications

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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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Waiting in the Wings

Last month Buddha performed in his first school play and, not surprisingly, it stressed me out from casting to curtain call.

He loved it! He was wonderful!

I’d like to let that be enough, to leave it there. But I can’t. I won’t.

If I don’t do everything I can, at every opportunity, to improve my son’s chances of creating a place for himself in this world I will have failed. I will not have done enough.

Fact.

This isn’t about letting him find his own path, or trusting that every stepping stone is a learning experience to empowerment and self-ownership. This isn’t about allowing hard lessons to build strength of character. This isn’t about my anxiety or control issues. I am well aware of the damage and negative narrative they both inflict on me daily.

This isn’t about the show, either. It’s about the process.

It’s about children and their right to experiences that nurture healthy development.

But it’s mostly about my son’s special needs. His extra, different needs. When it comes to how he internalizes his experiences, sometimes good enough just isn’t. Shame has damaged enough generations and I can’t sit by and let it claim my little boy without a fight. He is already struggling with emotional governance. He’s 8 and has a neurological disorder. It’s all so real.

I’m afraid of what will happen if I let it lie. I’m afraid he’ll spend his life waiting in the wings. Or worse.

This was the first show Buddha was in I didn’t direct. At nine months he premiered as the “happy ending” baby in my theatre school’s production of Into the Woods and was a huge hit. (I might be a little biased.) He was on stage every year after…until epilepsy. At 4, he was the cutest Kristoff from Frozen you have ever seen. After that, after diagnosis, he was afraid and didn’t try again until this year. This was his comeback.

I have run theatre schools for over 25 years and, I admit, I have some established ideals and heady expectations for working with children. I have binders full of curriculum, boxes full of scripts, and Pinterest boards up the wazoo for child development, parenting, progressive learning, science-backed education, and more. I’m an all or nothing kind of girl. I also have a clear, defined philosophy on why and how theater is important for children. This expertise came hard earned and backed with success.

But this was Buddha’s thing, not mine, and it made him happy! So, I gladly gave over the reins. (Gladly might be an exaggeration.) Plus, God knows teaching your own kids always sounds like a good idea until you’re halfway through and you can’t turn back and suddenly your living in a dark Modern Family episode without the touching, resolved ending. So, I trusted the processes and took on the supporting role of fan mom.

He got a little part and was so proud of himself. It was an especially big deal because of the anxiety he’s battling this year. Another gift from epilepsy and his parents DNA. He practiced, he listened, he cared. He even let me help him. That’s how much this meant to him! At one point when I was asking him to repeat one of his solo lines a few times more than he wanted to, he said, “You sound mad. Are you mad?” Damn, son!

“No! honey, I’m not mad.” I said. “This is mommy in work mode! That’s all. You’re working your hardest and doing a great job! And I know you can do it. We’re working the steps so YOU know you can to it too. This is just mommy teaching,” I said. And, can you believe he said “OK,” and went back to work? OMG. If that had been me, I’d have screamed at my mom about being mean and left the room crying. I spent much of my childhood in that exact scenario.

He was doing all the things we’d been working on with therapists and teachers during the year. Using his words and enlisting his own opinions, confident in his self-expression. We were working, communicating at a level I didn’t know him capable of and it was awesome!

I’d like to let that be enough, to leave it there.

He loved the idea of being in a show, the pretending, the posturing, the accolades, the storytelling. But what he really loved was being part of the group. What he really loved was feeling valuable, like he had a place in his class. A class he barely attended all year because of med and seizure complications.

I wish I could have let that be enough. I wish I could have left it there.

Here’s why I can’t. We practiced his lines and made sure he was ready for his big debut. We were, however, unclear and uninformed of exactly what the kids did throughout the rest of the show. Buddha couldn’t remember, or didn’t know, or couldn’t explain, or a collection of all three, what he did as an ensemble member. Being ensemble is a difficult set of sequencing for any kid, let alone one with limited working memory and underdeveloped executive function.

I asked for videos of practice, and none were sent home. I asked for counsel on the parts he was struggling with, and got a “let’s see how he does response”. I asked to watch dress rehearsal and was invited to “wait in the lobby”. I was never told of any confusion he was experiencing.

It was a risk, not pushing harder, I know. Not stomping my feet and demanding more attention left my tongue bleeding on more than one occasion.

I was riding the line between experimenting with what Buddha could handle and going full mama bear on the director. A director who, by the way, was never told about Buddha’s epilepsy. But that’s an issue for another day.

I’m actually a bit of a chicken shit in real life, but if someone is messing with my kid? Let’s just say, Captain Hook would look meek comparatively by the time I got done with them.

But, this was Buddha’s thing, and he was happy. I didn’t want to mess that up. I didn’t know what would happen, it was a new experience. I took a chance. I didn’t want to seem like the snotty, know-it-all director who comes in touting how she has much better ways to teach theatre to children. This was a grey line for me. Experience, performance, education, special needs, independence, parenting. I had to compartmentalize them all to ensure I was being what Buddha needed not typical bombastic me.

So, I let it be enough. I left it there.

The night of the show the opening numbers went pretty well. He followed his neighbors for the dance moves but pulled them off and got where he needed to be. In the front row! He looked happy and engaged. Then he almost fell off the stage but caught himself. Then he got tangled in the curtain during a scene change and missed a line, but no one was the wiser. All good.

Then, and best of all, he remembered his lines and his little duet. Center stage he relished the moment and I could feel his little soul fill up! It was a huge moment for him. So much bigger than his three little lines.

But then the next part of the show happened and we went from Never Land to Walking Dead in an instant. He got lost. Totally lost. He practically got eaten. He was shoved and shuffled about by the other kids until he landed in a no-mans land between two happy lines of singing and dancing pirate wanna be’s. Two lines of cute, dirty-faced, lost boys and girls smiling their totally “normal” smiles. This went on and time slowed to almost a stop as my little lost boy literally turned in circles not knowing where to stand, what to do, or who to turn to for help. He wandered back and forth, and back and forth until he just stopped and looked out at the audience, resigned. His eyes glazed over and this absent, confused look came over his face. Raw fear. Raw pain.

And the show went on. Without him. While he took on the role of the “sick kid”.

All he needed was a buddy. A partner. They could have been the “Lost Boy” twins. That’s all that needed to happen for my son to not have felt that shame.

Life lesson or opportunity for healthy development? I don’t give a shit. No one puts Baby in a corner, and no one lets my kid get eaten.

Except that’s what happened and I couldn’t do a damn thing about it.

It was just left there for the world to see.

Fail. Fact.

This show is a small reflection of a very big world! A world we don’t get a break from. And it was personal for me. Was I wrong to not be more demanding? Was it meant to be? He’s my baby and I know he’s going to have hard knocks, but do we really need to set them up for him?

The next day he had another show and now I knew how to help him. He made it out of the curtain for the missed line and he didn’t fall off the stage. He remembered where to stand, and was assertive enough to get where he needed to be. He still didn’t know the song, but he wasn’t lost.

He is capable, but he needs a different setup. He needs clearer expectations and a little bit of help.

Don’t we all…to some degree?

I am aware that I try to plan for, if not flat out control, every possible hurt that comes his way. Healthy development is essential for my kid because I am afraid, with good reason, not only for his mental health but his life. I am charged to defend his right to a good, loving life. I would feel like that whatever his diagnostic destiny. I felt like that for every student I ever taught.

But this? This is my son. And he shouldn’t have to wait in the wings, or get eaten by zombies, or fear Captain Hook to become the person he has every right to be.

I couldn’t let this one be but I can’t change it either.

I have to leave it here.

I’ll do better next time.

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Lost Boy-LTT

Dear Teacher,

I’m so happy the play was a positive for experience for Buddha, he loved it! I, however, am upset about much of the process and hoping that by sharing my concerns we can avoid a situation like this in the future. How Buddha internalizes the events of his life and the people in authority around him will be a major component to how his confidence develops,  and while I am trying desperately to teach him accountability, assertiveness, and trust, it’s harder to do that when he isn’t being given what he needs by the people who are supposed to be showing him the way.

I know this play was a bit stressful for you too and I totally understand it’s a new venture without a yet honed plan. I know we’re all figuring it out as we go. And I know that you see my kid for his strengths and his challenges. But, can you please make sure people who are dealing with him, especially those teaching him, know he has a medical condition and requires legit accommodations? I guess since he has a 504 and a one-to-one, I assumed that would be done and I admit I’m distressed that it wasn’t. I’m thrilled he was treated as one of the other kids, but the director had no idea of his challenges until I called him half way though the process to see how I could help at home, and he said, “Yeah, I can tell there’s something going on. What’s wrong?” Please understand the effect this had on me? I know you know how this attitude about and toward Buddha is exactly the opposite of what he needs, so I just want to make sure it doesn’t happen again. I know not everyone is going to be the best, I know he needs to learn to handle hard and unfair situations, but this is second grade and it was the best part of his week! It wasn’t just a play it was an opportunity to build trust, to work a process, to socialize, to memorize, to be a real part of a community, to connect to his peers. This was a huge deal!

His accommodations not being taken seriously was upsetting in itself, but the real reason I’m writing it because of the night of the show. It was a second grade play, not a method acting lesson on how to be a real lost boy. Unfortunately, he knows that feeling all too well. As the performance was getting closer, I also wrote to the director and asked what I could do to ensure he didn’t let the class down after missing weeks because he was in the hospital and we were on spring break, and I was dismissed with a one sentence email, “we’ll see how he does.”. Then, I asked if I could watch dress rehearsal and was told I could “stay in the lobby”.

Then, exactly what I was afraid would happen, did. The night of the show Buddha didn’t know where to go during one of the songs and wandered around the stage totally lost and scared, while everyone else was singing a happy song in two cute lines. The look on his face was so clear, frightened, and lost! And the whole room was seeing it! It wasn’t a mistake he made, it was the process not accommodating his working memory and processing deficiencies. He was clearly capable, evidenced by his performance in the parts of the show we practiced at home, he is not an idiot! But, you know he is unique. Literally, someone could have given him a buddy and that look, that fear needn’t have ever happened. I put on shows. I have done this my whole life and I know things happen! I don’t expect him to not get lost, and I know other kids get lost too, but not like that!

I know this was a complicated experience for you too, but this was too important to let go. I just really want to ensure that people who deal with Buddha are aware of how capable he is while also being aware and careful because that he has very real needs. Needs that if not met, could dramatically hinder his chances of emotional and practical success in the world. This isn’t just about allowing him to be successful, it’s about building a foundation of competence and support so that he doesn’t spiral into self doubt, depression or worse, which you know is a very real possible path for him.

I’m grateful it was a positive learning opportunity for Buddha to work on being assertive and learn the value of practice! He loved being on that stage with his friends. He wants more of that so desperately…and it devastates me.

Thought you should know:(
Thanks!!
Kerri