Tag: special needs

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The Dark Truth

I can’t always explain how, but I know if something is true. I feel it, and those feelings help me live with ease and openness of heart. When I know something is true, I feel less afraid and I don’t try to control actions outside my behavior as much as I do otherwise. It feels like I’m not lost and alone on an endless lake just trying not to drown when I live in truth.

Truth is my buoy. I have lived my whole life working toward being open and honest with myself and others. The only rule we did not break growing up was the “be honest” rule. I am vigilant in awareness and welcome all input that will lead me to the truth. I survive to live in truth.

Or do I?

I think I might be a liar.

‘You know what’s wrong with the truth? It’s fricken hard. ’You know what’s wrong with trying to find a truth that works for everyone? It doesn’t exist. ‘You know what’s wrong with bringing only light to the world in the name of honesty? It’s pretty much a lie.

We want to be happy, so we search for the truth. Or, we want to be happy and do everything in our power to avoid the truth. And no matter how our psyches and societies try to convince us otherwise, we usually think we are doing it right. But there is no one way to be happy any more than there is one truth, at least not one we are all ready to know. And I am no different.

Depending on how you chose to see the world, as it throws you recklessly against its limitations we, at some point, have to shit or get off the pot and decide on a working truth. I choose to be connected and to believe in the constructs of law, the biological need for community, and the accepted limits of right and wrong. I choose to live toward compassion and communication rather than aggression and war. For me, the animal impulse to move forward in spite of fear and failure is just as true as my desire to heal and fix, the need for touch and console. Those choices are just as true as my grave knowing that the moments I feel most pure and divine are in moments of love. I live for love and truth.

But, like life, the truth is messy and hard to purely articulate. And often times, it is elusive. I desperately want to know why. Why is my son sick? Why are we collectively cruel to one another? Why are we so primitive that we feel it easier to push love away rather than welcome it? Why can’t I relish the moments of gratitude every second of every day instead of hiding behind fear? Why don’t I lose my shit more often, it feels like I’m given ample opportunity? Why am I so weird?

I am not usually this heady or maudlin, but here I am. I guess I am bordering on teenage existential bullshit, but It’s because today, for the first time maybe ever, my rage escaped… and it felt fan-fricken-tastic. And now I’m questioning some important ideals I thought up to this point were entirely true.

(Don’t worry, I didn’t hurt anyone emotionally or physically.)  Image result for smiley emoji

Today I settled into a deeper part of myself, a part of myself that feels giddy with confidence because the shield of goodness I wear around my grossness cracked open. Something old and raw surfaced in me today, and it was…affecting.

I never doubted that the world is full of magical beauty and goodness, of miraculous, lighted spirit. But along with the light, the world is dark with hate, indelicate stupidity, and ridiculous greed. The world is full of ugliness I never admitted was real because I never could admit that I held a piece of that ugliness in me too.

But today, I saw myself in a whole new light, and I loved it. I wasn’t ashamed and I wasn’t scared. I am empowered! Today, I have the courage and confidence to sit with the truth that darkness is not the opposite of light, as I knew it to be just yesterday, but it’s own ugly truth.

I think people are capable of so much more than we think we deserve; and every idea I have, every breath I am gifted, every action I take centers around the impulse to heal pain with love. But I am not living up to my full potential if I hide rage and confusion behind purpose and healing, and only justify meanness and wrongdoing with compassion. It’s not the worst trait a person could have, but it is a half lie.  Because I am also disgusted. I am hurt and scared, and I am pissed!

But, all of a sudden, that doesn’t bother me because, all of a sudden I see evil in the world not as a journey to salvation unmet, but as a pure fact. Or, I see that it can be both. Like the sun on a lake reflecting sparkled ripples or hiding in shadows, the darkness is not in spite of the light but with it. They stand alone as much as they are dependent on the other. Today I am equal parts rage and love. Today is real because today I want to hurt and heal. I won’t, but I want to. And for the first time in such a very long time, if ever, I feel whole.

I am not afraid the shadows will consume me or turn me bad. I am not scared of my failings or my darkness. They are mine as much as my profound love and belief in the magic of it all. I am not granulated throughout the centuries and universes as I wish I were and I love it! I don’t have to be what I am not, because I opened the door to raw, raging anger and the feelings of injustice and pain. I am here at this moment with a new truth, a truth where the light and the dark are not concerned with their maker, only with being seen. And, I see them each. I have space for them both.

At too young an age and not deserving of it, I was shown shame and blame. I knew myself to be bad because I was not good enough to deserve love from many whose only job it was to love me. In primal need to control my failings, I buried dark feelings. I went on to try to save everyone, not just my family, not only myself but everyone. I neglected my true anger and fear, my desire to burn all the ugliness down to ashes. I wanted to be reborn without surviving the fire. That was my truth. A truth I believed unchangeable. (At least not until  I was good enough, perfect enough, and selfless enough. I’m still waiting for that to happen!)

And so the fire raged hotter and darker in me every year, hidden under my “goodness” until it finally began to destroy me. The drinking, the dreams, and the pretending was all an act to stop the truth that pain and rage aren’t handed out only to the weak, but to everyone. Today I learned that the darkness is real.
I hated the darkness in me. I wanted to be only light, not the weak, unworthy thing I knew myself to be. But, I wasn’t weak, and I wasn’t wrong. I was just never allowed to be dark and angry. I wasn’t allowed the scary feelings that were raging around inside my little redhead for fear of becoming them.

Today, the valve opened, and I was ready to feel something new. I took a good look at that dark truth, and I saw the lie. Even in my darkest nights, I denied the dark. It wasn’t until I realized that I could have darkness in me without becoming evil that I finally begin to surrender. I stopped pretending I was only good.

“…if we don’t learn to honour our aggressive emotions with equally aggressive action, we will most likely fall ill in mind and body.” 

-Dr. Nick Baylis

The truth is, the darkness is as much a part of me as any light, just as there is good in many people who are filled with hate and pain. I don’t wish for others to hurt, and I will still help whenever I can. But I want to rage in a fury, and rail against my hurts, I want to name them and not be ashamed to vanquish them with all the passion I have inside me.

I know I am good. I know my choices are mine as are my actions, and I know that those actions leave ripples in the world around me. But my feelings? They are mine alone, and I will rise with them in confidence. I will no longer be afraid of my darkness. I have faced the world’s uncaring control, and I have survived. I know I don’t have to drink it away, I don’t have to pretend it away, and I don’t have to make myself into something I am not. And I know that those incapable of loving me back, of facing their own truth, are perhaps wounded birds that need to be nursed back to health as much as they are toxic, scavengers of light. But I know too, that I am strong enough to welcome the darkness without falling into it.

Today, I have a new truth. I will dress my darkness in shadow to my light. I will work to highlight my bruises just as I will reach to brighten my shine. And I will live more thoroughly than I have before. I think I might even be happier!

The truth is, we all must find our own truth.

I want to live more fully in love, more generous in giving, and now I will because I will no longer deny the darkness. I want to see how I come out. I want to see what happens next, what I can do. I wonder what I will be? I may not end up as clean as I once dreamt of being, but I will take action with good intent, I will work to live in awareness, and I will be true.

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Mind the Gap

Every two years Buddha is tested by the masters of care in neuropsychology at the Children’s Hospital of Philadelphia. At the very least it’s an exhausting exercise in stress management. At its crux, it is a test of aptitude, designed by super smart people, that strips brain function and ability to learn down to scribbles on a sheet of paper. It’s a rough couple of days, but necessary. It pushes our little man to his thinking brink and past his emotional limits, and it fills me with dread waiting for his place in the world, in school, to be whittled down to pencil marks and checked boxes on officially recorded forms. He is the kid on the paper and so much more.

The test is the tether between Buddha’s brain development, his epilepsy, his abilities, and the real world. It is an eight-hour gauntlet of academic prowess, executive function processing, cage fighting stamina, and emotional regulation manipulation. It’s given to see if and where his brain is progressing or regressing, to label any learning, emotional, or attention disabilities, and to validate or debunk any testing the public school system has done or not done.

It’s a bitch! It’s like trying to catch a NY subway as it’s racing down the track. It’s like trying to catch a NY subway while you’re naked, running violently through a crowded tunnel, where you don’t understand the signs, and the damn train is racing down the track. It scares the shit out of Dave and me because, with the results, we have to accept, all over again, this mean, ugly disease. We have no choice but to see where he is and where he isn’t. We have to have the courage to look at the steaming gap between him and the typically progressing world. And that sucks! Good or bad results, it doesn’t matter. We leave splattered by epilepsy and its bludgeoning gap.

This latest test seemed to be no different. Buddha did great and charged forward as only he can. In his Captain America costume and white blanky by his side, he led the charge with his tenacious, caring heart on proud display. And, as always, we left splattered. No matter how we look at it, no matter how proud of Buddha we are, no matter the strides he makes, he never really catches the train. We fail every time. It’s our job to teach him how to catch the train. We are supposed to lead the way, get there first, and make sure those damn doors don’t close without him.

Buddha did great, but this time, the gap is even wider. This time, we had to imagine a life where we are only ever running alongside, feverish and determined, but always missing the train.

Here’s where he stands. His academic scores and IQ are dropping. But, and thank goodness for this, not because he is regressing, but because the others are leaving without him. It’s good news; it could be worse, his brain could be deteriorating. (I didn’t know IQ scores could change but they can. It’s a marker based on a forced normal like everything else in the world, so I try not to be afraid of two those evil, stupid letters. I try.) He’s not losing brain power; it’s just that he can only do so much with what he has. But, with that, he is still moving forward, and that is a huge blessing!

His attention level was average, the little shit, because, that is not what we see at home. But it’s positive because it means he can buckle down in short bursts when it matters. The test is intended to push him, but nothing can replicate his day to day struggles, so we average the results and are glad for him that he was successful on the day. His attention scores also highlight his ability to hyper-focus through his ADD and anxiety, which is, at least, valuable information if not frustrating to him and his parents.

His memory is selective and in the end, will not likely ever serve him. Some of it works and some not at all, and each day is different. It does not matter the time of day persé as much as how we present him with retainable information. By the time he goes to bed, he can not tell you what he did during the day. But if you paint a mental picture for him, he gets the essence and the bullet points; he feels connected. If you give him three scenes he can recall the overall message of them, but we will not be playing memory any time soon. And let’s not forget to only give him two directions at a time.

Details are thin, timelines are moot, and sequencing is not an expectation we should expect. He will need graphic organizers for school and life, indefinitely, and he will always need tricks and reminders. In spite of that, intuition, feeling, and images help get him through. And, thank God, we live in an age of modern technology. He might have to take pictures all day to get him from point A to point B, but he’ll get there. Hopefully. Plus, he’s damn good at faking it! He can even fool me into believing he knows what’s going on when he doesn’t even know where he is. And that is good news considering how cruel people can be to fellow humans with disabilities.

His stamina is what it is. Considering he seizes every day and takes enough medication to kill a bull, it’s a miracle he can function at all. But, we’re managing that with daily naps and clipped activities. It’s the best we can do, and it’s better than it was a year ago.

Here’s what all this means. My son will not be able to learn or function at societies level of expectation, and the gap will most likely continue to widen, and he will most likely fall farther behind.

In many ways, all any of us can do is mind the gap. It’s the train’s job is to race on not worry about the gap. All we can do is mitigate our stress. All I can do is my best to teach Buddha to run, to fall, to rest, and to try again. It’s my job to teach him how to catch that train, to help him believe he can, and then help him accept falling without feeling defeated each time he misses it.  I don’t know if I have what it takes to do that.

I hated that damn gap! It makes me want to scream and curse at the sky and the seeming unfairness of it all, but there’s only so much we can do about that. So, we will keep running; we will keep trying to catch the train. We will tell him that he is perfect just as he is and that working hard and being kind is all that matters. We will highlight and reward all the beautiful pathways his brain does take and the difference he can make in the world because of it. We will tell him a thousand times a day that we love him more than anything, no matter what. We will tell him he doesn’t have to catch that particular train, that there will always be another.

But of course, that’s pretty much a lie.

 

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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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FEELINGS THERMOMETER

When I started working with Buddha he had a hard time with self-awareness. Something that a lot of my students struggled with.  He had trouble using words to express when he was angry, happy or sad. So, I immediately printed out pictures and examples of what those emotions looked like. I also created a “How do I feel” chart for his room.

Come to my surprise… it didn’t work. Which, by the way, happens all the time! Over the past few years, I have tried a bunch of different tools with children that just don’t work. Either it is too confusing, too easy, or not interesting to them. It is so important to know that every child is different and every child needs DIFFERENT TOOLS.

But, I did not give up. I reached out and spoke to Buddha’s therapist and she told me that a “feelings thermometer” has worked for her in the past. So I went home and created a visual thermometer with numbers and colors to use. This time IT WORKED! He loved using it and found it so easy. Instead of using specific words to express his anger, all he had to say was that he was “at a 10”. And instead of saying he was feeling happy or content he could say he was “at a 1”.  Not only is Buddha more self-aware, but now it is easier for his parents and me to respond to his emotions (i.e. if he is at a 10 we do a set of cooldown steps that I will share in the next few weeks)

 

HOW TO USE THE THERMOMETER:

  1. Print it out and laminate it. Feel free to add other things to it if your child needs more assistance (i.e. pictures of real people angry or sad).
  2. Make extra copies so you can take it with you when you go out. For Buddha, I created 2 smaller versions and laminated it so he can carry it in his book bag.
  3. Review it with your kids. Go over the picture and explain what each number/color means. If they are feeling angry it will be at the top (in red) of the thermometer VS. if they are feeling content and happy it will be at the bottom (in green) of the thermometer. Make it clear that it is ok to feel any number.
  4. Ask them consistently as possible “what number are you feeling?”. It’s important to ask them this even when they are not feeling sad or angry. It’s just a good way to check in and have them practice.
  5. Give positive praise when they use it. Every time they honestly tell you what number they are on celebrate it! Feel free to give them points as well as an incentive.

 

Download the thermometer below along with a smaller version so you can travel with it 🙂

Thermometer Feelings Chart

Thermometer Travel Size

 

 

 

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Summer with Epilepsy

I love summer! I love the freedom, the vitamin D, the light, the change of scenery, and especially the pace. We swing full throttle between energy and placidness like a feather on a lake crest. We bounce between beaches, lakes, museums and play dates, to chilled out self-confinement in our beautiful home until we feel rested and recovered for more sun-filled jaunts. We read, we write, we study, we play, we connect to our bodies, we talk and laugh and live. In the summer we touch every part of living, especially the marks we miss during the year. The marks we miss because of epilepsy.

We’ve collected three years of data now, so I am confident summer bliss is not a fluke. With or without seizures, and let’s be honest we’re never without seizures, it’s the only time of the year we have moments of normal. Moments where Buddha doesn’t feel separate from his peers, moments of ease and flow. In the summer we are not harnessed to a schedule that perpetuates his disability. In the summer we are able to expand and live at whatever pace he needs and the only thing perpetuating is the light in his eyes.

We have bad days, we have wonky place episodes with aggression and hate, we have therapies and lessons. We have tutoring to help him keep up with the gains he worked so hard to make during the year.  And yes, we have schedules. Oh my, do we still live by schedules. We have schedules, timers, to do lists, and point charts for every step of the day. They are his anchor to the world, consistencies that allow him the confidence to expand and explore new sights, new thoughts, new feelings, and new experiences.

But even these bad days are better in the summer. They don’t spotlight the discrepancies in his growth to his peers. They don’t mark his slower progress. Instead, these days illuminate his progress. In the summer, his kindness, his strength of will and heart, and his ability to move through endless cruel fits of fate are bathed in a halo of sunshine that allows him to see how powerful and amazing he is. Summer is the glowing lens through which we see how stupid the idea of normal is. How unnecessary to his success.

If only that were true all of the time.

Fall will be here soon and he will have to once again begin the daily battle of trying to live everyone else’s version of normal. He will try to make it to school a few days a week. He will maybe, just maybe, have the energy and forward brain activity to allow for a sport or activity. He will begin to use his schedule not to mark the fun and progress but to count down the minutes until he can rest for the night after the mental exertion of the day.

In the summer Buddha gets to be Buddha. In the fall and winter and spring, Buddha is the kid with epilepsy.

I love the summer.

I love my little man.

I wish it could always be summer.

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TIMERS

As I introduce more positive behavior tools I want to stress the importance of a TIMER. Next to laminating and using the word “flexible”, a timer is something I use all the time. And I don’t think I can stress the word all enough. I use a timer with Buddha when he needs to complete tasks like homework, reading, doing dishes or even when he needs to shower. I find timers are effective for four main reasons:

  • It keeps your child on task– When a child is given a task with no time frame they usually slack off or forget about it. Having a timer keeps them going because they want to finish the task before they hear that beep.
  • It requires less nagging and reminding– Instead of constantly reminding your kids to finish a task you want them to do, all you have to say is “You have 2 minutes left”
  • It helps with independence– The main goal for my students is independence. I want them to be able to complete tasks on their own from homework to brushing their teeth. Once you use a timer enough, you can ask your children to use it on their own. You’ll be surprised at how much they can get done!
  • It’s fun- Turn using a timer into a game. Ask your kids how much time they think they need to finish a task and respond by saying “Yeah? I bet you can do it in just __ minutes”.

How to use it:

  1. Introduce the timer. Explain how it will work and even model it if need be. Make it clear that different tasks will have different times.
  2. Use the timer as much as you can.
  3. Go over the time frame before beginning the activity. For example, say: “You can play outside for 10 minutes. I’m going to set the time and once it goes off you have to come in”.
  4. Give reminders. Make sure to remind your kids when the timer is getting low. You don’t want to add extra stress, but it is very helpful when a child knows how much time they have left. Especially if your child has a hard time with transitions (i.e. getting out of the pool, switching from iPad to reading). A simple “Hey, there is 1 minutes left” will make all the difference.
  5. Give positive praise! When they complete a task before the timer goes off celebrate it. It’s hard to do, so give them the praise they deserve.
  6. As always, be consistent. Use the timer as much as possible and remember, once the timer goes off, that’s the end. Try not to add more time.

Here is a video of me using a timer with Buddha. I tell him the set time before he begins playing and I use reminders as the timer gets closer to the end. This task would have been near impossible 6 months ago. The transition from a fun activity to work was very difficult for Buddha, but using a timer made things so much easier.

Below are two links to timers that work great with kids. The first is a basic timer, while the second is more visual.

Note- Your phone or watch can be just as effective, but it’s better to use a visual clock with your child first before moving onto a timer that only you can see.

Timer 1:

 

 

Timer 2:

 

 

 

 

 

 

 

 

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I Love You…Me. Love Part II

I have known love, faked love, been confused by love, made love up, forced love, run from love, and controlled-well tried to control-love. I have watched love morph and seen love grow. I have watched it die. I have been hurt by love, been healed by love, discovered parts of myself through love, been stranded by love, driven to love and driven by love. I have been abandoned by love.

I have loved and been loved.

I have searched endlessly for love, for connection. And I have loved outwardly on every level in every way.

I do not love myself.

I know that my Odyssey, as cliche as it is, is the search for true love. My battles have been fought through attaching myself to outward love as a means to find inner acceptance; true, compassionate love for myself. And I have to, at least, recognize that I am a brave and valiant fighter, determined to succeed in creating love or die trying. But I do wonder if maybe I’ve been fighting the wrong battles, creating demons instead of following my heart. Have I been fighting myself as a means to love myself? Have I missed that love is grace and not earned through punishment, but granted by the miracle that we’re here at all?

Either way, I have Don Quixoted my way through life long enough. As romantic as it is, I’m tired. So, I think I may, for once, try the path of least resistance. It goes against my very being, but insanity, as they say, is repeating behavior and expecting a different result. I may be stubborn and have dabbled in crazy, but I like to think I’m not hopeless. I’d like to think I can be taught to try something new, not just try again.

I don’t know how I came up with this. It’s probably the percolation of therapy and experience, knowing I can survive rock bottom, and the stability my little family gives me even through trauma. Whatever the culminating cause, one day I tried something new and it’s helping.

I confess that in my grief and fear I can be….well, judgy. The latest example of this is the frustration, borderline rage, I feel navigating the city streets. I swear to God, people, PAY ATTENTION!! It’s not that hard. Walk on the right side of the path, keep the flow of traffic going, and don’t be an ass hole. It’s not that hard.

When I first moved to Philly I loved walking through the crowds, being a part of the flow. Now? I hate it. All I see is people being idiots!

I hate that I do this. I hate the stress it causes. I hate the energy I waste on being angry. I hate how people don’t seem to care about each other.

Of course, this is just a simple projection of my inner fear and judgment. And I hate that too. So, I had to find a way to get from point A to point B without an angry anxiety attack.

I have been playing with the idea that we are all made of the same stuff. I have begun to take away the story, the narrative, and let it lie that we are all….well, stardust, I guess. That we are simply the same. I have stripped the complicated excuses away. I have always felt myself an outlier, I have never really felt apart of the “all”.  So through my life, I created a fairy tale where I was the outsider banging on the door of existence for entry. Since this basic shift in perspective, though, this acceptance that it’s not the actions that deserve love but just the insane fact that we all ended up here at all, I began a little experiment to try and ease the angst.

As I walk down the street, I now say, in my head of course, to everyone I pass, “I love you”. I don’t mean I want them to come to dinner or even that I want to be friends. I just mean, I love you. We’re both made of the same stuff and by acknowledging that I can know love. I can love you. It is not an attachment love, but a recognition.

And guess what? It works. When I stopped putting labels on love, expectations of what I needed in return, and simply met existence with awareness, I softened. At the very least I became less hateful and angry.

For most of my life love was something I needed to fill the holes. I love love, I love being loved. I love soothing and reassurance. I love touch and acceptance. But that isn’t this love. This is a new love. A softening love. A simple, easy love.

I wasn’t loving wrong, but I was loving for the wrong reasons. There are many layers of love, many ways of connecting and I am grateful for the love I’ve known. But, I was missing the most obvious, the most simple love of all. The most basic but important kind of love. I wasn’t letting in the love that comes because we are all the same. That we’re here at all and we call came from the same source. I don’t know what that source is, but I will no longer punish myself or others because I don’t. It’s OK that I don’t know the source. Because what I do know is that if I can love strangers on the street simply because they exist, I can certainly love myself.

 

 

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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.

Posted on

I am a Lost and Found Mom….Again

I, obviously, have not been consistent with this blog, and for two years I have been trying to figure out why. I have been hiding, surviving, trying, albeit half-assing, my way through our life since Buddha’s diagnosis in a way I would hate myself for if I had the strength to crawl out from under my anxiety and fear. If I could let go of my grief.

Why is this page still here? I don’t have the guts to shut it down. I also don’t have the guts, and maybe the words, to follow though and put myself untethered on the block, and I am ashamed of my constant inconsistencies. It’s funny because I am equally one hot-headed, determined show off who, despite any unintended intonation, has a lost to say about all the ways I desperately want to fix the world! I want to fix it all. I want everyone, myself included, maybe especially, to know they are worthy of a life of grace and gratitude. Joy and love. Safety and stability. Possibility. I’m guessing that over the last two years I didn’t actually think that was possible with a “sick” kid. My bad. Not sure what I can do about it, but, my bad. I may also want a world without pain, but I don’t really, it’s just that I need a little break from mine. I want the world to have what I didn’t have as a child, what I don’t have now, and what I am afraid I am not worthy of ever having. I want to heal the world. Yes, partly so I can be worthy of healing but don’t dismiss that need in place of the genuine impulse. I want to heal the world. The universal pain is many times too much for me to bear. I am an idealist in the wrong time and place.

I want to keep my ideals in a grown up world. I want my child’s fate, this pain, this battle with no end to have a meaning that makes me better, that makes him strong and keeps him alive. I want our shit to propel him to live a life he could have had before his diagnosis and, damn it, deserves still, not curse it for our remaining days. I want more than just, well, it was meant to be! I want to fix it all.

I am not found. I am not entirely aware of the ways in which I am lost. It’s ironic, if not ridiculous, that I am also an extreme over-achiever. I think I have been trapped between perfection and failure for most of my life. It’s just that life kicked my ass one too many times in the past three years and I am now paralyzed between who I wanted to be, who I could be, and who I am. My expectations are something, and usually not anything helpful!

I have thought that I don’t keep it going because I want the blog to be Dave’s thing. My husband is the true writer and it opens his heart in a way I can’t reach. He deserves that connection to himself and our community.  Our son deserves his reflections, his words of unhindered love. I worry I’m preachy or whiny, or that my shit isn’t worthy of words. I’m worried I don’t have the resilience or stamina to keep it going. But honestly, it just scares me. It wasn’t just the epilepsy diagnosis, it wasn’t watching my son almost die, his body shut down and his brain fire into a damaged zone. It isn’t just the inertia of working day and night to rebuild our life and our expectations while simultaneously waiting to wake up one day and our child be gone. It isn’t just that I live in a state of constant crisis, sometimes of my own making. These were patterns a lifetime in the making. I have been lost for a long time. Abandoned, manipulated, and shamed as child by one parent, loved and enmeshed with the other. Addiction, fear, anxiety, constant illness and uncertainty have have laid a crisscross of opposing beliefs in my heart to make me the wanderer I am. Not unique to the world but damaging to me.

 

I want to be found, but I need to know what that means to me. I also want it to be OK that I am lost. I want to earn and feel worthy of sharing those thoughts, that process, and, hopefully some progress. Maybe a little grace. I will continue to work the definition of lost and found for me as an essence, a presence within my circumstances. I will try to be brave and share them.

I’m happy to say that in searching for why I haven’t been writing I have found something. I have landed on a meaning of lost and found for me and Buddha. It’s rough waters we surf between disease and health, disabled and normal, but it’s in that place I think a part of me might be found. It’s not the place I want to be found, but I guess that’s not up to me and it’s a good place to begin again. This is where I will stop pussing footing around and give this journey meaning. He is sick, he might die, he is sometimes not the same kid from one day to the next. He’s only 8. But he is also alive and wonderful and kind and capable. We have a whole two years of Instagram goodness to show for our efforts and we are not done yet. The world may not know what to do with us, it may not have a place predesigned for our belonging, and it may be scared of what we’re bringing. That in-between place makes us feel lost, but that doesn’t mean we can’t find ourselves again, and again, and again. We can be found, even if I never stop being pissed and hurt that we don’t fit in.

I promise to define, search and wander that place in my mind, in my heart, in my life, and in this blog! We may live with one foot in and one foot out of the door, but that doesn’t mean I have to be lost.

So, here I go. Lost and Found…between sick and well, disabled and typical, expected and created!