Tag: special needs education

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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!
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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