Epilepsy and Neurodiversity

I would like to take a moment to thank the Neurodiversity Movement. That’s right, the whole and justified crusade for acceptance and understanding of our many neurological differences. Although I began learning about neurodiversity in relation to Autism, my neurology has peeked it’s divergent head out of the blue. It is extremely important to note that epilepsy and Autism are two very separate and distinct variances. I think Amy Sequenzia summed this up perfectly in a recent piece she wrote for Ollibean.  

“I am Autistic. I love my brain, I am proud of my neurology.

I have epilepsy. Seizures make my brain hurt.”

However, having been deeply immersed in my learning about Autism as a kind of diversity (as opposed to all the other stigmatized perceptions that the world will lay onto it) has helped me come to terms with my own self. Vitally, the Neurodiversity Movement has given me perspective, an accepting perspective, not of my epilepsy per say, but of my whole and justified brain.

Perspective on panic: I have written about my first experiences having seizures as a wild and Rebellious teen, and I have also touched on the vulnerability and fear that comes with having seizures as an adult, as a Mother. At first, I blew epilepsy off, and for some reason I remained seizure free for almost 15 years. Lucky me, to be so carefree. Then, of course, everything changed. Having a seizure and the entire trauma that I experienced around that event was heavy. It still is. I want to be free of that worry but I never will be again. The thing is though, I did not panic. My fears were and are in check. There was no devastation, only a hard change. I have already walked through panic. When the first of my Sons was diagnosed with Autism, I went into a tailspin of fright. I followed every dark thought. I cried days away. I was captive to my fears.

I was wrong.

I don’t know what was more painful, buying into those first fears, or realizing my own ignorance and the potential damage I could have done with it. I could have ruined my Sons’ lives if I had stayed afraid, but I already walked through panic. I’ll be damned if I will walk that way again. It took too much of my Sons’ lives and it took too much of mine too. I thank you Neurodiversity Movement.

Perspective on shame: I have also written before on my habitual attempts to shed shame. I remember being scared to tell people, strangers at the park, even close family members, that my Sons were Autistic. I remember getting kicked out of story time at our local public library and that hot flash of humiliation thumping in my face while walking back to the car. I remember when someone I love did not bother to explain auditory processing disorder to a visitor, and instead said “He’s deaf,” because deaf was not as disgraceful to her as the negative associations she had made with Autism. I remember shame. It is the same burden as fear and stigma. It has nothing to do with my Sons and their neurology and everything to do with the rest of the world. There is no disgrace in how my Autistic children were born, their differences, or their disabilities and it is through that same understanding that I can now view myself.

I have become disabled.

I am not humiliated.

I am not apologetic.

I am not guilty.

There was no way for me to properly advocate for my Sons while I was ashamed, and there would be no way for me to properly advocate for myself now if I were to accept that burden again. I remember shame, and I now know that I must fight it off too. I thank you Neurodiversity Movement.

Perspective on love: If you have read anything I have written here, then you already know, everything I write comes from love. I love my kids like I need to breathe. Love is what brought us through the panic and shame. Love is what my Sons gave me while I was lost, mistaken, and flawed in my views on Autism. Love is what pushed me to find Autistic adults and finally begin to understand. Love is what held us together, and holds us, sturdy, as sturdy as a family can be with the twists and turns we have experienced in our journey. Amazingly, I had lived my whole life without realizing the power. I just didn’t get it. Now I do. I get that love is an endless well, stronger than anything that we might face. Love is what this whole thing called life is all about. It will guide my family and friends to support me when I am having a seizure. It will help me to make good decisions regarding our health. It is so prevailing that I love myself, even though I am different, even though my brain hurts sometimes, even though I have epilepsy. I found through the Neurodiversity Movement that Autistic people are absolutely loveable, and I am loveable too.

My deepest thanks to all who crusade.

And what is wonderful for the whole wide world is this; everything that I have gained here, applies to you too. Whoever you are, whatever it is that makes you different, I am not afraid. I will not be ashamed or shame you. I will love you. I will give thanks for you too.  

 

More to read:

Bipolar - A Neurodiversity Approach

A Plea for "Big-Tent" Neurodiversity

 

 

Thoughts on Therapy for Autistic Children

After having my first seizure, we all decided to lighten the load, lessen the stress in our lives, and get off the Autism train. For quite some time before that I had been debating on whether or not to pull my boys out of therapy.

I won’t go further without saying that this is not a recommendation I make for you or your family. This is also not about denying my children any kind of help that they may need.This is one of those hard fought deliberations; something that we wrestled with, something that we decided was right for our children and whole family. It was based on our individual abilities as well as our combined abilities and it was based on our disabilities too. I do recommend that you be diligent in your questioning of what is right for your child and family.

But when I had that seizure everything changed.

What was once up for debate in my mind became clear as crystalline. I needed to prioritize my health and simply, I could not drive to the appointments. We stopped all therapy. We got off the train and headed our own way. I want to go back though, not to the intervention route, to those former wrestlings in my mind.

Why was I considering ending therapy with my Sons before?

The most important reason is that most therapies for Autistic children are founded in the deficit theory. In other words, these practices are strictly built to mitigate the delays and differences of Autistic children rather than nurturing their whole self and following their abilities. In fact, far too many times the unique skills and passion that young Autistic people have are completely ignored, decimated actually, in favor of straightforward normalization. I was taught to see my children’s “deficits” before their abilities. It all started with the red flags.

One of my Sons had no words until just before his second birthday. He exactly exploded with new language then, having ten, twelve, twenty new words each day. When one of our first therapists noticed him pointing to the sky and saying “airplane” she asked me if I was happy about his progress. I told her yes, but no. His kind of language explosion was just another red flag added to my list. I was too busy looking for (then frightening) Autism to grasp my whole and gifted Son.

And truly, how could I nurture my whole and gifted Son with that limited perspective?

What are the effects of this narrow point of view on the life on an Autistic person?

For a while I believed I could advocate with enough power to change our therapists’ perspective too. Think of the shift that a person schooled in the deficit approach, a person who built their career based on the deficit approach, a person who thought they were doing good with the deficit approach, would have to make to meet our family and our new place of consciousness. It would be painful. I could not advocate enough. With all my other responsibilities it was a battle, I later realized, I would have to let go. For now.

Another nagging recognition I slowly came to were the inappropriate ways behavior is addressed in some kinds of therapies. While I rejected ABA for my children straight from the train yard and for many reasons, I did not fathom how pervasive these backwards methods were. In our first OT experiences, my children were pushed to continue performing through meltdowns. “They need to learn that their fears are irrational.” I could hardly stand to be in the room, but I couldn’t leave them either. I would drive us home with tears in my eyes, but without full appreciation of why. My behavior was to cry, but my reasons for the tears were yet to be understood.

This is ironic on many levels.

One of my Sons had a meltdown every time he was pushed to rip or cut paper. In the time that has passed since, he has been able to communicate to me why. He does not like the idea of ripping something that is whole, into pieces. He does not like the idea of tearing whole apart. He is afraid of that, and why shouldn’t he be? It rips me up just thinking about it now, now that I can see my whole Son, now that I know his reasons for being afraid were perfectly symbolic of what we were subjecting him to.

We all have a right to our fears. It might seem irrational to you, but you don’t know what is in my childrens’ hearts, their minds, their Souls. My children have reasons for being afraid. More than you can imagine, unless you are Autistic too.

And what about my behavior? I would leave this particular therapy upset, but why? I couldn’t even communicate the reasons to myself yet. The sad feelings were there none the less. Why was I forcing my child to go through these traumatizing experiences? Like him, I was afraid. Afraid he would not catch up on those deficits, figuring that breaking ourselves now would solve our future (imagined) problems. I did not understand my tears were based in regret for having pushed him in the wrong direction. I did not understand that we were wrapped in this weekly cycle because I was the one with irrational fears. I worked, and I work, hard to be mindful in our journey. It still took me a long time to comprehend and communicate the reasons for my own behavior. I own that now.

We cannot change the behavior of a child without understanding the motivation that drives it. We cannot change our behavior without understanding the motivation that drives it. It has become a moral issue with me. While I did not put my children in ABA because I knew enough to know better, the same problems with how Autistic children are met, the wrong approach, spills over into most other types of available therapies as well.

Aren’t we all just made up of our behavior? I have a very rich inner life, but my behavior, how I act, especially when I act out, is my communication with this world. All Autistic people deserve to be understood first. Then maybe we could stop our determination to change them in the first place.

It is more.

So much more.
So many things we have to question.

Does the therapy you are providing for your child feel therapeutic?

For us, no.
Not right now.
Not in this way.

I came to these answers in my recent wrestlings. Everyday I ask more, I answer more, and I share here. Rejecting these old ideas and practices is only the beginning of the story though. It may prevent the psychological damage created in viewing Autistic children by their deficits only, created by ignoring their legitimate fears, created by refusing to understand their perspectives, but what about us learning how to truly serve Autistic children? What about helping them thrive not by the shallows of conformity, but thrive as Autistic people do? On their timelines, on their strengths, with our sincere support. It is largely uncharted territory but the path is being laid. It is listening to the experiences and wisdom of Autistic adults. It is listening to our Autistic children. It is the way we are going. Even if I have to wrestle each railroad tie myself. 

More on Happy Rebels

In my last post I wrote about my Happiness Rebellion, and I have been given a reason, or two, to revisit the topic today. When I look back at my blog, and I have done that quite a bit lately, weighed out my words to suss out their value, I see that I have been working on my Happiness Rebellion all along. First it was postpartum depression, then it was the fear of learning my children were Autistic, then it was the shame of realizing that I had Autism all wrong, then it was the injustice of it all. So much has disturbed my Soul. I’ll tell you what I am good at though; growing.

The growing is that silver lining most the time. I cut it out of the stormy clouds. I sew myself a silver dress. More importantly, I save the pattern. I don’t forget. I go back to it, and sew again and again. I go back to it, and grow again and again.

 Happiness Rebellion is Mammy making a green gown out of those old curtains left hanging.

 Happiness Rebellion is sweet lemonade.

I’ll give you a recent example in my life. While I was busy feeling all the dark things depressed people feel, a small gesture of inclusion sparked my shift back into reality, back towards happiness. A friend reached out and asked me to rejoin an Ausome group project. The Autism Positivity FlashBlog in itself was hugely uplifting. I loved the spirit of the Flashblog last year, and this year, I got to work behind the scenes to make it all happen. I got to help send off a well needed wave of positivity about Autism into the dialog. I got included, and I caught the elevating energy of it all. My genuine thanks to those who accepted me back in, and to those who participated in the event. It outweighed my sorrow. It made me remember. Yes, I am down. No, I am not out.

And upon returning to writing, I also received a gift. Actually it was two gifts, because you know, that is how my life goes. After my last post, Leah Kelley from 30 Days of Autism, sent me these really cool buttons! She is such a good and supportive friend. I can’t decide which one I like the most. I thank her again and again.

So, I plan on walking with happiness. I plan on moving forward with positivity and honor in this blogging community, in the Autism community, with the Autistic community, and in real life. I have the pattern memorized by now. I know what to do. I am a Happiness Rebel. While we are all on different paths, with different challenges, and different resources to meet them, you can walk in the same direction towards your unique happiness. You can walk with me. You can walk with us. Come together at the silver lining. Join the Happiness Rebellion! (Grab the button too.) *Smiles at you*

  

Happiness Rebellion

“If you are silent about your pain, they’ll kill you and say you enjoyed it.” Zora Neale Hurston

I could never really leave this place without writing this post.

A while back, I set my sights on something real good. Something fiercely defiant. Oh, but it was something sure fucking fire. I finally understood that my ultimate Rebellion would be happiness, and I set my sights on it.

Backup. I have struggled with depression since I was a child. No small girl my age should have to feel the things I felt then, and no young teen should have to feel the things I felt then, and no new Mother should have to feel the things I felt then, and no Woman should have to feel the things I have felt recently. Something in my brain feels too much.

And in the same life, I have also been given a whole lot of shit. I have been abandoned, abused, and attacked. I make mistakes which compound my problems, my depression, as well. It’s hard to tell the difference between what is chemical and what is real sometimes. Sometimes, I get lost in that dark stuff.

And in the same life, I have been given many blessings. My family is number one. My kids are just as I had hoped for, brilliant, funny, and caring. I have had most things that I wanted, and all the things I need. I live in a beautiful place with three kinds of jasmine, a gardenia bush, and a southern magnolia tree, all in bloom, all around me now, as I type. I have a huge capacity to give love. I redirect my thoughts as much as I can towards these blessings.

Lately, I have had to deal with some major health problems. I have been whisked away in an ambulance while my children watched. I have had several more seizures, enough to call it epilepsy and not some isolated experience. I have lost my ability to drive. I have been on four different medications, some with horrid side effects. I have had to support my children through their own hospital stays and make tough decisions regarding their health and happiness. I have had a close family member become seriously ill. I have survived lately, with my depression by my side, the entire time.

Lately, I have had trouble in the Autism blogging community. I almost lost this blog. Friends People who knew I was struggling took advantage of my vulnerability. Other people used me, in a game, as collateral damage. I have lost actual friends along the way. They sided with the other side, or they became my beautiful triggers. I guess the former weren’t actually my friends either, but the latter, losing them pretty much gutted me.

My depression makes sure I feel every ounce of this. Some say it is an open heart, true, but my heart is wounded too. Every little irritant that gets in, infects.

However you perceive it went down between us, if I hurt you recently, I sincerely apologize. I am sorry for my part in that nasty game we all played. Play me all you want, but believe me, I am sorry if I hurt you. 

Even better, I forgive you. 

And I am moving on. I let my pain go now. I refuse the game. I redirect towards my blessings. I fight my depression daily. I defy the odds, and I walk towards happiness again. I am already far far away, actually. I got enough to carry without holding on to anyone else’s shit. Setting this down is the finest thing I could have done. I am free from that misery, which fuels it all.  

I go back to my work, advocating for my children, and other Autistic children out there. I go back to my work boosting the ever so important voices of Autistic adults. I go back to work on my steadfast and trustworthy friendships. I work on being a more honorable woman. I work on my depression. Amazing opportunities have opened up for me and my work, and that is where I set my sights.

Despite my own brain telling me not to,

Despite what life hands me, fairly.

Despite hate,

I decline darkness.  

I go back to my open heart.

I sew the wounded parts.

I love again.

It feels triumphant.

I feel happy.

Sure fucking fire, I am.

This is my Happiness Rebellion. 

Side note to my loyal readers: First a big thank you for staying by me while I sorted all this out. You may have noticed that many of the posts that were once here have been taken down. I learn every day. I struggled with realizations that I was doing more harm than good for a good long time, since Newtown really, and I also learned how deep some will go using my own words to hurt me. I know now that I had said too much about my Sons and our very personal life, to carry on as I was. While I cannot fully erase the things that I have written in the past, after all this is the vast internet, I will no longer promote that information, which was not all mine to give in the first place. Again, I learn every day. Thank you for understanding and continuing to read as I figure out if and how I choose to write again. Much love.

Flowers Under Your Feet

Someone once told me, you are not really living if you do not know the living things around you.

Like when you walk through a field in Florida just to get where you are going, and you know that 27 different flowers are likely blooming under your feet. A whole path of petals is laid out for you to step on, but most people call them weeds.

Or maybe you know that Autumn has arrived because the Dragonflies, clinging quietly to the tips of the tallest leaves, are showing wear and tear on their wings. They look ragged, holding on as long as they can.

Perhaps you know a certain tree. She happens to be your oldest friend in town. She is steadfast like no other. She listens. She reminds you to grow anyway.

Knowing these things, being open to learning when I don't, makes me feel alive, creates relationships, helps harmonize, brings peace.

Who hasn't felt like a crushed flower?
Who hasn't felt worn out from the heat?
Who hasn't felt stuck in one place?

Who cares enough to know?

Striving towards that kind of consideration, that level of openness to living, is the same spirit within me that appreciates diversity in my fellow human beings.

What if it was not about where you were going, but about loving the colors of all the flowers?

What if we always took that moment to honor those who have flown ahead?

What if we knew the quiet type was our equal instead of cutting her down?

 

I make a bouquet.
Weeds, and wings and other overlooked things.
I fasten it to my head.

It is between me and my Creator.
It is a matter of being alive.

You are not really living if you do not know the living things around you.

If you only knew.

Autistic People are Beautiful

Autistic people are beautiful.

Intensely beautiful!
and lovely!
and joyful!

When I first noticed my young Son flapping his hands,
I saw a maestro,
a hand dancer,
a beautiful child!

I had no idea yet that he was Autistic.
I had no idea yet how the world would change what I saw.

Suddenly, his hands became red flags waving.
Suddenly, I became afraid.

Duped by what society thinks about Autism.
Tricked into tragedy.
Led into lies.

The world has it all wrong.

Autistic people are beautiful!
My Son is beautiful!

When I first noticed my other young Son began connecting with others,
I saw a benevolent Soul,
a gift of openness,
a true friend,
a lovely child!

I had no idea yet that he was Autistic.

Suddenly, his personality became "outgoing to a fault."

The world has it all wrong.

Autistic people are lovely!
My Son is lovely!

When the world contradicted all those good feelings I had for my Sons,
I Rebelled.

I found the Autistic community, Autistic people, Autistic friends!
I had no idea yet how they would change what I saw.

I saw them demanding the rights to their reputation,
I saw the reason why.

Autism is not to be feared!
Autism is not a tragedy!

The world is lying to you!
The world has it all wrong!

When I looked to Autistic people it was not so hard to notice.
I see true again!

Incredible happiness,
Dapples,
Thousands of wonderful things!

Autistic people are joyful!

My lovely Sons, every day, you show me just what joy means.

Autistic people are beautiful.



This poem is part of a flash blog aimed at changing the way Google auto-completes it's searches on "Autistic people are..." Last week, a very successful flash blog was held to protest and change the same kind of thing, with "Autistic people should..." Unfortunately, when either of these phrases are typed into a search bar, Google offers automatic and seriously damaging suggestions like:


Picture from Musings of an Aspie


Picture from the main flash blog site, Autistic People Are...

This is obviously unacceptable, and Google has made some changes, but they have more work to do! Join us!

We continue to protest!

Understanding Death, Mourning, and Living On

It is a very important day for the Autistic community and those who love them. My heart is with you, my family, my friends. I mourn too. Our story is for you.


Yesterday morning, Max came running to me with tears in his eyes.

"Mommy! The flowers are DEAD!"

The flowers that Daddy brought Mommy after her seizure. The flowers that had to be set low, so we could touch them, and talk about them, and see them, eye to eye. The flowers that got divided into four vases, all perfectly lined up. The flowers that through out the week and with our curious kind of love, occasionally got tipped over, but not broken. The flowers that are now dead.

I came to Max. I tried to explain. Words still weren't enough.

Max started putting the concept of death together so early. I always thought I would be the kind of Mother who would give the whole truth and nothing but the truth, but life is different than I thought. My sons have intense anxiety. They need just the right amount of information. They need me to be connected enough to know that amount. As the boys turned three years old, Max began to worry about death. He was starting to understand the concept of life, but what was that mysterious ending all about?

One day back then, we were watching a windy rain storm out the window. It pushed and pulled an old beloved tree trunk, a headless dead tree, all that remained from a once lovely coconut palm. An old tree trunk, which upon it's perceived death the year before, became home to all kinds of wild life, woodpeckers, owls, black birds, squirrels, snakes. An old tree trunk that had held on so long, and then the wind had it's own way, and that 20 feet of glory finally hit the ground with a loud thud. We saw the whole thing. Max was horrified. He could not wrap his mind around what had happened. He wasn't processing just a tree falling. He was trying to understand that mysterious ending. He was trying to understand death.

I was a shade of horrified myself. How do you help such a tender young child who is smart enough to figure out death on his own, but so full of anxiety that he is struck by it, at age three? It has got to be frightening to have that kind of intensity to balance. This kid could run laps around life he is so full of it, and yet he worried. I was worried with him. There was no easy way to go from the few words we had then, to offer enough of an explanation on death to soothe him. I did the best I could. I told him, life is growing, death is not growing any more. And that is where we really began discussing death, a year and a half ago.

In the time between, we have had so many more life experiences that have taught us about death. Although Ty has not always been able to tell me in the same way, he too has caught onto the subject, also with alarm and worry. We have watched our Grand-and-Great-Grandfather grow older and closer to his end. We have started with seeds and grown sunflowers taller than fences. We have watched them bend back down into the Earth. We have begun again with the next generation. We have accidentally squished a centipede and then reminisced for weeks, asking for tape and band aids, only to reconfirm, you can't fix death. We have seen movies like Charlotte's Web, heavier with the sad theme than Mommy remembered. We have learned the meaning and sometimes subtle difference between concepts of pain, and sickness, and sleeping, and old. The subtle differences between life and death. We learn still. We learn together.

Just this past month alone there has been so much life and death. The boys got updated on their vaccinations. They were angry at us for subjecting them to it. We talked about how vaccines hurt at the time but they also provide valuable protection from truly terrible illnesses, how vaccines keep us alive. Mommy got sick of a different sort. I had to go to the hospital. I had two seizures and days of lethargic recovery. The boys worried and everything changed. I have no idea what is ahead of me, but I am still alive. Our dear elderly neighbor also went to the hospital in an ambulance, as we sat and watched through the kitchen window, helpless to change it, unable to eat our dinner that night. She has been standing up against death for months now. She is still holding on, still alive. My husband lost a good, good friend. He passed away suddenly of a heart attack. The boys listened in when we got the news together. They watched Daddy get dressed up for the services. They asked so many questions. We tried our best to answer with truth and care. Our friend has died, but we are still alive.

So yesterday, when Max cried out over the dead flowers, I knew they both needed more. We sat down and I drew them a picture. The whole cycle of a flower. The full beautiful and scary circle of it. Ty listened and looked quietly. Max listened, looked, and loudly told me,

"I don't like this Mom! Draw it different!"

"I can't. This is life."

"Then draw NO life!" he demanded. He begged.

"I can't. I can't draw that either."

We sat in life and death. We sit in it still. We. Together.

I said, "It never really ends. You go back to the Earth, and then more life."

"I could be a flower?" he asked me.

"Maybe?" I wondered with him.

"Are you pretending, Mom?" suspiciously.

"No, I am not," knowing this was not the stuff of make believe, but not knowing for sure. I made a silly face to lighten the mood.

We laughed a bit at life. We laughed a bit at death.

It is much better than worry, even if we can only do it for a few seconds at a time.

We learn we are alive when we look at that mysterious end.

We live on!

Double Down

 

 

Double Down: A gambling term from blackjack, it describes a strategy in which a blackjack player who is sufficiently convinced of the strength of his hand can choose to double his original bid. In this context, "doubling down" means making a calculated gamble in order to maximize the potential yield of a project.

It happened again.

I had another seizure.

This time, there was no easy way to notice the trigger.

This time I know I am going to have to sit in my vulnerability.

Instead of pretending that it was a one time, this time, I cannot deny.

I double down.

And I double down my whole life.

My hand is worth the bet.

My Self.

My Family.

I double down.

I double down.

I will have to get to

Living more,

Loving more,

In the other times.

When I have control of my Self,

Body, walk in Love!

Mind, think only Love!

Heart, my Heart, stay sturdy in your Love!

Sometimes you will be down.

Sometimes you will be out of control.

My hand is still good.

I double down.

I double down.