*This post appeared first in three parts on BrainSpeak.com. I’m happy to share it with you here in it’s entirety.*

I began in the field of neurofeedback for brain regulation as a student of EEG Spectrum where they trained practitioners to investigate brain function challenges using a model of arousal.

To put it briefly, the arousal model uses data, history and diagnosis to investigate whether symptoms are related to under-arousal or over-arousal in relation to the desired brain wave activity in the specific brain region performing the functions being examined. This method was easy for me to grasp.

I then continued my education and experience by apprenticing under leaders in the field—an intuitive healer Catherine Rule of Optimal Brain Institute and a very brilliant neuroscientist with two PhD’s, Dr. Burke. Catherine Rule was a holistic thinker of human interaction while Dr. Burke was well versed in neurophysiology; married to problem solving brain issues by considering the neurochemical interplay between brainwave firing and neuronal behavior. I was was able to blend these two approaches into my investigative model of brain dysfunction.

Thus, the arousal model served me well, even as I adapted it to merge my two mentor’s styles and fit my clients with their very extreme sensory issues (I began by specializing in autism and brain trauma because that was the clientele I was already working with).

Meanwhile, the field itself was bigger than I had first realized and there were more approaches than the arousal model to learn from.

Such was the reality in the neurofeedback field back then, and – due to advances in technology and brain science- it has become even more diversified in its approach to brain rehabilitation in the past ten years. Thus, I found myself enamored by new ways of thinking and with the inclusion of the QEEG as a diagnostic must (Quantitative Electroencephalograph– QEEG– is the measurement, using digital technology, of electrical patterns at the surface of the scalp which primarily reflect cortical activity or “brainwaves.”) much of what I had previously done so effectively became antiquated.

Progress and the era of the brain marched on as I evolved in my attempts to keep up with it. Somewhere along the way I forgot some things.

Recently I was going over old footage of my son doing a neurofeedback session. In it he was talking at least as good as he does today, many years later. (Dar was a nonverbal twenty-three year old when we were first introduced to Neurofeedback. A year into this exciting therapy he had fluid monosyllabic language whenever I was with him.) In that footage from the past I rediscovered my old approach. It was a happy/sad moment to realize I had lost touch with what had worked in my search for what would work better. I took a step back and reintroduced the old thinking. He is, again, learning faster than usual.

Regardless of all the clients I see world-wide, in the end it is my family that teaches me the most. This, I suspect, is because of my ability to see them over so many years of development and then discover what works and what doesn’t.

Additionally, I am blessed by my business model creating a unique approach to this work because I travel home to home, school to school, country to country, dysfunction to dysfunction; training the brains of group after group. Due to a vast array of clients and cultures I have the opportunity to observe similarities and disparities: race to race, religion to religion, diet to diet. Armed with this advantage I have taken the arousal model concept and applied it in areas where a QEEG was not possible.

Using this approach I have compared symptoms and individual brain processes worldwide. Thus, I have been enabled with the opportunity to think creatively as I gathered more and more hands-on knowledge. I want to share what I have learned so that we might consolidate our discoveries and do even more for our very deserving clients.

However, there is a problem.

My own temporal lobe brain challenges make “traditional” record keeping a problem, and it leads me to wonder how I will pass on what I know and share responsibly with the field.

My own temporal lobe brain challenges make “traditional” record keeping a problem, and it leads me to wonder how I will pass on what I know and share responsibly with the field.

I have healed this issue markedly. I have healed to the point in fact where my difference is more of a gift than a challenge. This is especially true in regards to understanding and creating usable protocols for healing work with science based intuition. However, where report writing in a scientifically accepted style is concerned, I am still challenged.

This “difference” in my recording style came up for me recently when I was asked to contribute to an interdisciplinary magazine with pictures and graphs. You see, pictures and graphs make it harder for me, not easier.

Though I can take the stage and share what I know with flair and a photographic sense of recall for brain dysfunctions, though I can create movies, videos, podcasts and abstract visual art while orchestrating the edits in all motion mediums– graphs, still pictures and power point presentations still disorient me. When you include these in your work, I skip them. I am a word person.

I can write a book, straight from experience and memory, easier than research citations. I can use creative writing techniques to make learning feel like a plot driven novel, easier than stay awake while reading a research paper. In fact, I stay awake by doing all my reading research while walking on a treadmill. Unfortunately, writing a research paper is impossible to do while asleep or walking on a treadmill. For me, the redundancy inherent in the writing and/or reading of an APA style document, is absolutely exhausting. Fortunately these differences- between me and my colleagues- no longer mean I judge myself as broken.

If ever there was a field that helps a person to appreciate difference, it is the field of neurofeedback when viewed through the arousal model.

Previously held convictions– like that coffee and sugar are unhealthy and cause hyperactivity—shifted for me to the concept that they indicated the need to self-medicate, and assist the individual in their search for a state of balance. These habits became clues about the need to counteract under-aroused states and ensure survival. The fact that I would drink coffee in order to sleep was no longer crazy, just a bit of information on what I needed for homeostasis. Everything about me, my clients, my children and my friends, became evidence and led to ideas on how we could correct our imbalances rather than lean on our crutches.

Life became more accepting as my friends and I stopped arguing for each other’s preferences. The wine drinkers accepted the coffee drinkers, and the beef eaters accepted the vegetarians. Each of us assisted the other to adapt and find new ways to garner the same effects. We became helpers to each other rather than judgers of each person’s habits.

It’s a wonderful way to live and I would like to share this thinking everywhere.

At this point I am much farther along in my career and I want to pass on my experience and my learning, but my observations and solutions are still experience based rather than research or education based and this, I fear, means my ideas are sometimes met with a dubious attitude. However, hands-on is who I am and will always be where my knowledge primarily comes from. Even though I am close to finishing my PhD, my style of learning, discovering and sharing will always have that leaning. And that makes it harder to be heard. Or so I have told myself.

And then I remembered Dr. Burke.

He was proof reading my book MIRACLES ARE MADE: A Real Life Guide To Autism. He questioned something in it and I answered him from memory. He questioned even more, and each time my answers satisfied his need for clarity. He read the case study one more time and said, “We can’t deny your lived experience.”

And yet people do deny the lived experience of another, on a regular basis.

People deny the lived experience of another on a regular basis.

As I previously mentioned, I specialize in autism. And if there was ever a population wherein lived experience is constantly denied, it is this one. People immediately polarize the minute the word “vaccine” is mentioned and parents who want to share the story of their child’s vaccine reaction are forced to hide the truth of their lived experience. Rather than be listened to, these parents are shunned. They often respond by knuckling down into the idea that vaccines alone cause autism. Meanwhile, the parents whose child’s autism was evident before any vaccinations were ever given scream and fight against anti-vaxers, claiming that these parents are distracting the scientists from doing the real work. People begin to choose which camp they are in and the lived experience of all parties gets lost in the battle.

In my opinion, it’s the battle that stops the information gathering. We should not be polarized into oppositional groups. We should be cooperatively looking for the sameness in each of these stories. Polarizing perpetuates propaganda and does nothing for discovery. This is the same type of mutual distraction the coffee drinkers use when they insist that wine drinkers are bad, and vice versa. It is also the same type of polarization that occurs in every field or population wherein two or more main approaches to problem solving face off against each, for no other reason than to prove that they are right.

In my opinion there are no answers for everyone, there are just answers that fit some and not others.

With that in mind I will share a few neurofeedback observations based on the lived experiences of my clients.

1- Vertigo can often be stopped with high frequency reward training at c3,cz, c4.
2- Children with autism can often train for up to an hour and receive great benefits.
3- Cz can exacerbate and/or calm excessive erectile fascinations in people with sensory challenges.
4- The arousal model and my decision to high frequency train on the dopaminergic pathway-– neural pathways in the brain that transmit the neurotransmitter dopamine from one region of the brain to another — helped for dementia and depression, cognition and some movement in Parkinson’s. But the arousal method wasn’t enough to get the amount of change I now see and the ten plus year prevention of deterioration in my clients.
5- My son and several clients with severe ASD experience a calmed body with increased sensation in the mouth when I difference train 0z-fp2 @ 12-15. This awareness began as a happy accident and is the rediscovery of that my old footage of my son.

I could share more but this is enough to make the point that it is important to have a science based model to choose protocols, methods and equipment. However, it is also important to be open to just plain using what works. In my opinion, lived experience trumps.

Early in I was taught that a healthy brain is a flexible brain, one that doesn’t get stuck in any state or in the need for mood altering substances. I would have to add that for any field or social group to be healthy they must also be flexible, not stuck in the dogma of any particular model but free to dance among the possible solutions from group to group.

This, I believe, is what it means to embrace difference. And it’s an embrace worth perfecting because the treasures in this embrace are filled with all the different correct answers for each person in need.

Recently I was invited, as a speaker for RAINN (Rape Abuse Incest National Network) to contribute to a book they are soon publishing. A book that will include letters from survivors of sexual abuse.

I am honored to share, and hopeful that by remembering my past with candor, by revealing my memories, mistakes, and insights, I might be positioned to help a person now.

Well, that’s not entirely honest. I like to go big: I’m hopeful that it will help hundreds of people now and in the future.

This book excerpt is a little bit long and absolutely worth your attention. So I invite you to brew a mug of coffee or steep a cup of tea and find a moment. I encourage you to sit in the quiet while you read my words with volume.

And remember to sign up for The Loop so you’ll know when the book is available in it’s entirety.

Here it is friends.
A letter to my Auntie Carol.

Dear Auntie Carol

I don’t know if you remember or not but when I was twelve years old you were kind enough to let me stay in your home for a few days, it may even have been as long as a week. I was there with a cousin whose name I don’t remember. I do remember that we had loads of fun, just being alone in the country and playing in the fields. I had always loved that house. I was glad you and Uncle Gerald moved into it after Aunt Rose died. It was kind of weird when Aunt Rose’s husband married her sister. She was nice and all, but I preferred Aunt Rose so the house didn’t feel the same till they moved out. I don’t remember what happened to them. Maybe they moved away from all the reminders. It was all a very long time ago. They were elderly and I am sure they are all dead by now; reunited in whatever after life they believed in. Hopefully Aunt Rose wasn’t too mad at her sister. Who knows? Maybe she even appreciated it and was partying with her sister’s husband up in heaven. Life and love, as it turns out, is much more complex and sophisticated than I understood back when I was a child. I think that is what made my twelve-year-old attack of puberty so challenging.

Ah, puberty! What a cruel joke of evolution.

And that brings me to the point of my letter, and why much of my memories are so clouded over with the distraction of a more prevalent story.

Here is what I recall. I had had fun, felt warm and comfortable with you and Uncle Gerald, and enjoyed the company of whoever that distant cousin also visiting was. Likely it was someone my parents thought I would be positively influenced by, because now as I look back I suspect the whole visit was a sort of respite for my parents. Respite from the emotional instability my budding boobies and period onset invited. Acting out in puberty was simply a new kind of more perverse and confused acting out for me, and probably just added to my mountain of weird behaviors in the eyes of my parents. Back then I thought I was normal. I have since learned otherwise and wondered often how the strangeness of me influenced the strange happenings of my life. I have no answers for these wonderings. I just wonder.

So, indeed, it is possible that you were supplying respite for my parents and a positive influence for me. Whether that is true or not you were hospitable, asked for very few chores (which was respite for me) and I had fun. I want to say thank you for that. I don’t think I ever did write the thank you letter my mom asked me to send a few days after the vacation ended. Perhaps you felt ignored, unloved, unappreciated, but you were not. That is far from the truth of things. Sometimes gratitude gets lost in the grittiness of life. That is what happened. Life got gritty and so I shut my mouth.

I think its time I wrote you that letter; the one I never would have written.

Dear Auntie Carol

I want to thank you for your generous hospitality, and tell you what happened to me, and to you, even though you were unaware.

The night before I went home we all went out for ice- cream: You, me, Gerald, the nameless cousin, and your boys. It felt like a true adventure because you lived so far into the country that going into town for Dairy Queen was tantamount to a trip to Disneyland. We were all a little giggly with fun. I remember feeling light and silly and laughing and joking and pouncing from the truck the minute we pull into the parking lot. I wanted to run and prance about under the town street light with my cousin. There were some boys there, and I think I may have been flirting while we danced around. Though I am not sure because back then I didn’t understand the concept of flirting. I do know it was all very titillating and a great end to a wonderful trip.

There is something so exciting about the night air and a socially constructed accident of budding boys when you are twelve years old and displaced with relatives who live on a farm. The combination can really make a memory of delight. For me, though, this part of the memory is super hazy and I can recall just bits and pieces of sensations and emotions. Perhaps that’s because my sixtieth birthday loams a year and a half away. Apparently due to the energy cost of maintenance and the neuronal erosion of time a brain only keeps the important information intact; for me sensations and feelings have always been more important than names and dates.

So here is what I recall:

I remember the drive home was super happy. We were a truck full of laughter and smiles and I wondered if you and Gerald might adopt me. When we arrived back Uncle Gerald pushed and cajoled everybody but me out of the truck. He asked me to ride with him while he parked the truck. And you seemed to look at Gerald as if you and he had agreed on something. So you all headed for the house while we headed into the darkness of the Quonset. I guess I acquiesced to the plan, but I just don’t remember doing that because my ears were ringing too loud to plant the memory. I do remember feeling weird and dizzy.

Then when we got into the barn-like aluminum Quonset he parked the truck and put his hands all over me. He grabbed at my breasts and pawed at my crotch and slobbered his saliva into my mouth while telling me not to be a cock tease. He said that I was asking for “it” all night long.

This … was … unknowable to me.

It felt so completely out of the blue, so completely unexpected, so completely unbelievable. That my army veteran, buzz cut, body buff, uncle who had always represented safekeeping, hard work and fun, might grab at me in this way and say these words to me threw me into an adrenalin panicked state of confusion. I was scrambling to think. My body was being pressed and scrunched. My mind was being raped!

And the only way that my twelve-year-old mind could make sense of it was to think that he must be in love with me.

Then I did what I had always done, acted in control while searching for a way out of the problem.

I suspect that whatever I did or said stopped him more because it was too crazy to be sexy than because I was strong or threatening in any way.

I got out of the truck fairly unscathed physically. I ran into the house. I didn’t want to look you in the eye Auntie Carol because I knew I was about to ruin your marriage. So I slipped past you and went straight up the stairs with my eyes on my feet. I told my cousin that Uncle Gerald was in love with me and that I knew it was true because he just couldn’t keep his hands off me (a line I had heard in a movie somewhere). While we were whispering about what I should do and wondering if I was pregnant we heard you and Uncle Gerald downstairs laughing.

That was unfathomable. I couldn’t see how you could be happy while he was telling you he was in love with me and needed a divorce. I mean I wasn’t even happy. In fact, I was worrying that I would be stuck with Uncle Gerald and that I was going to have to fall in love with him. And I certainly didn’t feel ready to be a parent to your boys. They were boys, right? I don’t really remember the details of your family. I think that is because it’s all too covered in clouds of confusion and humiliation. But maybe it’s because I have problems with those sorts of details anyway.

Maybe I wouldn’t have remembered them even without this incident. That is what I mean when I say I was a weird kid. I often misinterpreted people and events. And I seldom remembered names and faces.

However, I have always remembered feelings.

I snuck half way down the stairs and watched while you and Uncle Gerald laughed and flirted with each other. That was when I realized that no one was going to speak of this thing that had just changed the course of my life.

I went home in a state of shock that, for me, was sadly familiar and felt normal.

A few days later my mom insisted I write the thank you note I had been avoiding. I was to give you and Uncle Gerald gratitude for your generous hospitality. I was completely conflicted. I wanted to thank you, tell you, scream at you, hurt you. I hated you and every one who was a part of the story that I couldn’t tell because manners dictated be grateful and be quiet. Keep your mouth shut has always caused a war in my head. A war of lies and truth battling for position. The teaching of “tell a grown up” was punching it out with “keep your mouth shut” and leaving me with no mental stronghold because the grownups were the ones doing things to me. So whom should I tell? My cousin hadn’t helped. In fact, if I remember correctly she laughed at me and facilitated my erasing her from my person specific memory.

My mom just kept at me and kept at me. Laying one punishment upon another for my refusal to write the note, and then finally I did it. I told a grown up. I blurted out “FINE! You want to know why I don’t want to say thank you? It’s because dear Uncle Gerald was grabbing my breasts in the Quonset.”

There. I told her. And I knew she would kill him. I would likely be writing to my parents in jail, serving time for murder, happy to be protected.

Her response was immediate and unsurprised, “Well knowing you, you probably asked for it. Just say thank you and be done with it.”

She echoed what Uncle Gerald had said about me asking for it. I was stunned into numbness. Maybe I had? I wondered.

Back then the “maybe” was frightening. Now in my senior years it’s a little more logical.

Maybe I had been asking for it because I was unaware of what asking looked like. Maybe body language in a curvy body is read differently from body language in a child’s form. In fact, now as I look back from fifty-eight years of life experience I know that that was probably true. When I was twelve I was discovering and blossoming and budding and growing boobs. I was also still behaving as I had done previous to this transformation. I was unaware that being friendly and fun had changed its messaging. A new component called flirting had entered into the same actions. No one told me. They just touched me and called me names. When I was eight years old and I was friendly, it was just friendly. But suddenly my boobs and pubic hair had transformed it into a silent form of provocation and penile torture called cock teasing.

Given the disgusted energy with which people said those words I figured that “cock tease” was the worst thing a girl could do.

A lot of things happened as a result of that misunderstanding.

A lot of things!

So here we are. Its many years later. I know Uncle Gerald was terminally ill so he has probably passed. You may even have passed by now as well. Eventually time takes every one of us, like the great equalizer, we all end up dead. Perhaps that is why it’s a good idea to write to you now? Because time is catching up with me. And an untold story never dies. Personally, I don’t really want to take it with me. Besides, maybe someone else can have a better life because of it.

At any rate I have been asked to write and so I will. I have learned at least that much. Share your gratitude. And while you are sharing, share your truth.

My truth:
I can tell you that Uncle Gerald’s pawing wasn’t the worst of the things that happened to me. Though not talking to you about it might have been. Uncle Gerald wasn’t even the first one to touch my body parts. Though he was the first to touch them with curves and hair.

Uncle Gerald not being motivated by love was the problem. Because then I couldn’t continue to believe in the lie I had been telling myself about why this sort of thing happens.

I closed my eyes really tight and tried not to think about it. And while I did that I decided that the one thing I would never, never be was a vile little cock tease. Love, I decided, only comes to the person who is willing to please.

Uncle Gerald never left you and dad never left mom.

I assumed you were both more pleasing than me.

Up until then I had decided dad stayed with mom out of love for us kids. That had given his needs a perverse kind of sense. But Uncle Gerald made it into something different. I could no longer believe in romance, soul mates or destiny. Because the incident with Uncle Gerald wouldn’t fit into my fantasy of romance, the walls had crumbled and this dirty feeling action now became something about me and men and my life ahead.

I had buried a lot of truths about grown-ups already. Tried hard to fantasize them into protectors and caregivers. My Quonset date with Uncle Gerald taught me that even the grownups in my family were more enemy than friend. I found myself alone amongst many.

I decided to bury it all, again.

But my damn mother just wouldn’t let me be impolite or ungrateful.

She blamed me, again.

Just as Uncle Gerald had done.

The walls of my carefully constructed defenses were now broken. I had spent so many years immersed in the art of mental gymnastics that it was a surprise to find myself unable to duck and weave from the truth. Surprise – to understate the truth – was extremely uncomfortable.

Suddenly, I could no longer trick myself into believing that the soft touching adults in my world had been loving me. Immediately, sensual touching and sexual touching became one. I wanted to throw up the word love.

Previous to Uncle Gerald I had been able to bury the truth of my father’s character by calling it romance. I wanted to love my father, by any name. Then when Uncle Gerald pawed me I was faced with a dilemma: see my father as bad or see Uncle Gerald as in love.

I chose love, again.

Most days I understood that my father had to stop loving me and stay with my mother. That made sense. I had siblings. They would be sad if I married my father. I had built a lovely little harlequin fantasy until Uncle Gerald burst the bubble by laughing with you at the foot of the stairs.

I tried really hard to keep the fantasy intact. That is the main reason I didn’t want to explain to my mother why I didn’t want to write the thank you note. I was afraid to look at the family I came from as people who condoned molesting. I was afraid to risk finding out that they were the kind of parents that blamed the child. I was afraid to realize that molesting was the right word for all of them. I was afraid. I couldn’t look at it because then I would have to see the true faces of my sensual father and my hating me mother and all that had come before. And all of that had been happening in me for years. So when my mom said, “Well knowing you, you probably asked for it.” I figured it was easier to believe she was right than to believe that all of you were all wrong.

For years after that my mom brought you and Uncle Gerald up to me on a regular basis. Always acting as if nothing had happened. Behaving surprised when I refused to be where you were. Mom invited, “Uncle Gerald and Auntie Carol are coming!” to gatherings that I had to hide away from. She brought you up and brought you up and even bragged that you were coming over to babysit my little sister, effectively forcing me to act out in anger as a means of keeping her, and me, safe.

Every time it happened I screamed, cried or cajoled, “Why are you doing this? Stop reminding me of them. Stop inviting them and talking about them. You know what he did.”

Yes. I kept the truth alive and spoke out to my parents but I never told you.

So here it is many years later and I find myself writing a piece for a collection of stories about sexual assault. The intention is to clean up unfinished business by writing a letter to the appropriate person. But most of my business is finished, out in the open, available to all who like to read. So I though about the concept and then… you… popped into my unfinished business file.

You– more than Uncle Gerald– are my unfinished business. I don’t want to address the person who molested and confused me, that is a done deal. I want to address the person I kept the secret from because I think that could have been the moment when everything had a chance to go differently.

I think if I had gone downstairs that day and bravely walked into all your laughter and said, “Aunt Carol. Uncle Gerald was just touching me in the Quonset. He must be in love with me and telling you about it. How can you be laughing? Aren’t you mad enough for a divorce? Even my mom was normal enough to threaten that.” If I had spoken this twisted truth you might have laughed for a different reason, you might have known I was weird (if you didn’t already) but you would also have known what happened, and that could have changed everything.

You see, now as I approach sixty, I understand that when a secret is kept from us a whole new series of events unfolds. Like how grown-ups teach manners and lies about adult activities and leave children ill equipped for the truths that their adolescent bodies encounter. Maybe for you, had you known the truth in that moment everything would have morphed into something magnificent.

Heck, maybe you were in on it. Maybe you both thought it would teach me a lesson to have a man call me on my flirting, in fact I have a vague memory of something like that being said at some point. But that doesn’t mean it was. My memory is flawed after years of trying to justify the why of the adults in my life.

And even though I have no idea what kind of skeletons are twisting in your closet, no idea if you maybe even like that sort of deception, I still doubt that living your life was improved by my silence. But, who knows? Maybe if I had told you, your life would have changed for the worse. But I doubt it. People who do yucky things tend to be yucky more and more often as time goes by.

One thing is certain, it would have changed for the better. For me anyway.

I am sorry I never gave you a chance to know enough to have a choice and take a new aim on your future life that is now past.

And that’s really why I wanted to write this to you. Because finally at this late age I understand that nobody gets to change the trajectory of their future into one of empowerment by keeping something hidden. In fact, the way to purposely grow in the direction we want to grow in, is not by avoiding problems, hiding from them and keeping secrets, but by saying, “Hey, there is a problem here. Something happened. Help me make sense of it. Let me tell you about it.”

In that moment even Uncle Gerald might have changed. He might have taken a new approach and corrected his aim. He might have apologized. It’s possible.

Maybe even you would have. One thing is certain I would have known what was really going on and in that moment I would have grown stronger. I would have grown aware. I would have re-aimed and changed my trajectory.

And that might have prevented the many rapes that followed.

Because it might have corrected my mistaken belief that manipulated sex was what love looked like.

So, if for no other reason than to straighten out a past mistake and grow stronger today in my retirement years, if for no other reason than to share with others who may be having the confusion of this experience in their lives today, I would like to apologize for flirting and being apparently irresistible.

And tell you that you were wonderful. Thank you for letting me stay there. Uncle Gerald was not your fault, unless he was.

When Jon Stewart refused to tell jokes but instead spoke up on the shooting in South Carolina he used the term “Racial Wallpaper”. He explained that the black people in South Carolina drive on streets named after generals that fought against their freedom, that they walk under the confederate flag as they …. Live… reminded daily that they are not the people of choice.

These constant reminders of the local beliefs that serve as the backdrop for their daily living is what Jon Stewart was referring to as racial wallpaper.

The words hit me like a sledge hammer.

He was right! Hearing the term racial wallpaper helped me comprehend more than the horror of this horrendous incident… it helped me understand what to do. In fact, it got me excited.

Because I knew I had been doing it all wrong, I had been teaching backwards.

You see, I speak out on rape, abuse, racism, xenophobia, disability rights etc. and in most of these issues I use an analogy with which to explain how fooled we are by the evidence we see. I analogize the magician’s trick of waving dramatically his right hand while tricking us with his left. I was meaning to draw attention to the “truth” of what is in the shadows. But instead I drew attention to the trick itself. People imagined the dramatic movement because that is the part they had seen. They did not imagine the trick because the trick had tricked them.

They had no experience with what was behind the trick to imagine it with.

So even though I was trying to draw attention to what was behind the scenes I was in fact drawing attention, perception, and belief building to the distraction. No wonder people were left with the overwhelming feeling that something should be done but that they didn’t know what.

Then Jon Stewart used the term racial wallpaper and it hit me like a ton of bricks. In those two words he said what I have been trying to say, did what I have been trying to do. He took my mind to the behind the scenes and the way in which the behind the scenes is our wallpaper of abuse and assault and rape and murder and warmongering and racial hatred and all the other ugly aspects of American behavior.

Wallpaper is easy to understand.

Ugly wallpaper changes how you live in front of it. Ugly wallpaper changes what you think about. It distracts you without taking your attention because the brain is set up to ignore what it sees all the time, while still being shaped by its influences.

Some form or other of this ugly wallpaper permeates our every environment. It oozes personality and convinces without our conscious attention and it also provides us with the place to start. The wallpaper is the solution.

Take it down and put up something new.

Instead of just pointing a finger at what’s wrong and what not to do… do something simple and sweet. Let’s start with South Carolina. Let’s take down the wallpaper, the street signs, the flags, the frowns and justifications.

This is my request. If you fly a confederate flag take it down and put half way up- an American flag. And if you don’t live in South Carolina begin somewhere else. Look at your wallpaper. Find the direction to hate others or your selves and take it down.

Now put up something that says “people are wonderful and I can’t wait to love them.” If that is too silly to you then start with a blank wall and an intention to love. The rest will become obvious.

Put up some new inclusive paper with attention to intention. Invite human understanding and delight.

And voila! The America I chose to live in can become the America the movies convinced me I was choosing at the time. America Be Beautiful!

Allow me to share a short example of how buying into a label, and its associated myths, can cause you to reinforce the limitations of the diagnosis:

I recently had a friend visiting. My son was super interested in her and extremely stressed by her at the same time. His mood shifted daily from up to down to up and down. The minute she left his whole body shivered into a relaxed state and he softly smiled to himself.

I was pointing out the difference in his emotional state and my grandson said, “That’s how we all feel when we like someone a lot, nervous and afraid of screwing up.” I agreed and we continued to put away the groceries.

As Global Autism Awareness Day (and my birthday) approaches, I find myself assessing the state of things.

I reach out to make a difference daily, but do I? Make a difference I mean. Are things simply fated and occurring as they had to or do I, we, affect (intentionally or not) the world we live in? I have always believed in a multidimensional world manifested by our choices and feelings but… am I right?

It’s like asking if there is life after death. Unanswerable by any other means than faith, which is defined as the ability to believe in things despite evidence to the contrary. Delusion is defined in the same manner. I, and my children, worked hard to go from crazy to sane (I even wrote a musical comedy show about it). I am not sure I want delusion.

But sometimes life is hard.

And delusion or faith or just plain lying to oneself can be tempting.

So I go ahead and believe I am making a difference because that is how I get the energy to continue. I need energy because constantly giving to create more kindness, awareness, and ability depletes my resources. Believing it—and I—matter, refuels me.

However, sometimes this faith falters. For me that faltering generally happens near my birthday (I am now only a few years from 60).

April 2nd, Global Autism Awareness Day.

I peer forward into the next twelve months. I see April with autism awareness month and sexual abuse awareness month coincidentally coincide and feel the weight of that collision (both are causes I speak on).

Today I feel a little tired as I question my faith: If awareness works why do these months have to come back every year? Couldn’t we as a society actually learn and reclaim them for something else? Why do we set up the parents of children with autistic spectrum disorder to scream for more services without offering the correct type of service? Are we spreading awareness of the disorder or the therapies that work? Are we improving the situation or just creating more problems through the spread of broken ideas? If you think your child is autistic will you make him/her so? This is a genuine worry, especially true in the case of sexual abuse. Surely by now everyone knows never to touch children, that consensual sex is better than non-consensual sex? This is just truth (unless you’re dysfunctional and then you need to get help, not sex). Surely by now every one knows that no means no…. don’t they?

Please say yes.

Even if the real answer is no.

Obviously you can’t spread knowledge unless people are listening.

Clearly you can’t force feed people volumes of right answers, not even if you think they need to hear them. So to be an improvement leader you have to find a way to package the learning into what they want to know. This bait and switch process of information dissemination smacks of the corruptive processes politicians undergo in an attempt to become popular.

I do not want to grow up to be the person that used to care. I do not want to be, like the politician who has become unrecognizable to him/herself or their original cause.

I want to be me, but older.

Unfortunately, to some degree this adjusting away from truth is already happening to me. It’s an offshoot of systematized education. As I go to college and attempt to be accepted by my teachers and peers with PhD’s I become a pleaser whenever the end of a term begins to loom. I tell myself to just give them the answers they want to hear so that I can move on and gain the needed credibility to be listened to later on when I tell the harsher truth. When I give the answers they may not like. Unfortunately this ‘pretending’ leaves a resonance of reshaped belief in my head and what I used to understand becomes morphed into something new, and not necessarily better.

I still want to shout about abuse and autism and society’s contribution to both but I am busy doing the work of making it better, so there is often no time to complain. This is good, I suppose. Proactive and correct. But it grows only small potatoes in the world of massive change. To increase my impact I must be more mainstream. I consider the concept and find myself back at the question I started with. Do I make a difference?

Bothered by the repetition of the question I move my mind on into the next month of the year ahead…

I continue forward into May and mother’s day and wonder if my new creation, The In Home Parent Program, will ease struggles or fall on deaf ears. Do haggard mom’s tired of being judged by misinformed educators and child protective service workers have enough left in their soul to trust me, another expert? I know they should, but can they? I have made it as inexpensive as possible while still meeting my own obligations. But after all of the target marketing their desperation has attracted, do they have anything left? I can teach them what to do but it will still require work. I know what they need in order to cease the desperation but can I give them what they want? I can give them fun, but maybe not easy!

So I focus the program on my tribe, the families that already know my value and want more. I shape it into a way for them to get extra help for free while we spread right information to their neighborhood. Then I add a Skype portion. In case the new interested people are still too shy to share their home. Too afraid of judgment to have an expert in their home.

This is the special needs parent form of post traumatic stress disorder. For those who feel safe I offer to come to their homes. I am a different kind of therapist. Sure I am a neurotherapist and play specialist and those are elsewhere in the field of mental health, but I am also many times over a mother of successful special needs children who (unknowingly) used to be special needs herself.

It’s been a long successful journey and I know what mothers need but I also know why they are afraid. Why they end up wanting something that won’t really help. Unwilling to offer less than what I believe they need, I stop thinking about it and move on to… June.

June brings with it Father’s Day and college holidays and I wonder if I will ever remarry and/or finish my PhD. My mind circles back to the challenges of both being in school and dealing with schools. I ponder the permanent restructuring of my brain and the scarring of parental self-confidence caused by the imbalance of power given to government officials. Government officials who are blessed with the ability to charge parents for the slightest suspected transgression while the parents would have to go out of pocket to charge the official in return.

Conversely (or maybe because of this) July and August feel warm and happy in my mind’s eye. Grand-kids are everywhere and work is light. My used to be challenged children visit and I settle on the reverie, stop looking ahead…. Breathe my faith back into my body and smile.

Yes, my birthday is coming.

Yes autism awareness will likely misinform most families but my kids got better and at least some people will be looking for ‘how I did it’ information. These are the ones I want to teach.

Fact is, big potatoes can grow from small potato seeds. I am happy to sow those seeds another year. I am happy to focus and share and get this parenting program into the hands of the people who want to enjoy their children while helping them grow more capable. I am energized!

Focusing on my gifts: my beautiful trail of children, grandchildren and great grandchildren has returned my faith. In fact, the journey into uncertainty seems frivolous now.

Obviously I made a difference.

I engaged in parenting and helped my adopted sons and daughters beat the odds. They are independent and working at jobs they love. They live the life of choice and responsibility. And even the one who is still at home is growing more capable daily. But even if he weren’t, who cares?

We are happy and during the holidays, we play.

What else is there?

Domestic Violence is a form of abuse that begins with you.

Zero tolerance can only be achieved when we apply the rules to ourselves, and zero tolerance is the only way to create a peaceful way to play. So say yes to zero tolerance, everywhere!

You may feel you already apply this rule to yourself. You may be wrong.

Let me explain.

I was terrified to do it but did it anyway:

When I was a seven or eight year old little girl covered in welts from top to toe I asked my teacher for help. She asked me to prove I had welts right there at the front of the class. I attempted to pull my leotards down in a subtle fashion. I managed to expose a little thigh to her without revealing myself to the other kids. The welts in that area had gone, relaxed back into my skin and blended into nothingness. My cheeks were more inflamed with humiliation than my legs with abuse. She said I was exaggerating and I never asked for help again. This choice, born of this unsupported experience, put me in mortal danger many times in my life.

A lack of action taken by the teacher implied to me that the actions being taken upon me were acceptable.

I was terrified to do it but did it anyway:

When I was a young adult I saw a woman beating her toddler in a car parked in a department store parking lot. With trepidatious feet and shaking hands I headed to her car. I scarcely made a sound as I timidly knocked on her window mid-slap. My voice quivered as I asked her if she needed help. I said I often felt exhausted with my kids and wished for help, so wondered if she could use an extra pair of hands. The child’s eyes looked at me pleading for help. I said she sure is a cutie, huh? My knees were weak and I knew if the lady had a gun she might shoot me, but that little girl sure needed help so I stood my ground. I hung in there till the mood changed and the child was asleep. By then security had arrived. I went to my car and succumbed to shock and fear as I cried and trembled.

An attack of hatred or outrage by me would have put the child in more danger as the mom chose to justify her behavior.

I was terrified to do it but did it anyway:

A woman was surrounded by four primary school aged rambunctious boys circling her in the airport while she tried to solve an obviously stressful problem on the phone. Her fifth and oldest boy was being forcefully handheld to keep him safe from his own impulsive choices. He was clearly on the spectrum of autism and less than happy. Most of the people near by were eye rolling, tongue clucking, head shaking judgment passers. Some of the others were simply pretending not to see or observing with pity in their eyes. I started singing a silly song to get the four boys’ attention and made it into a turn taking game that used real words. This allowed me to “audition” for the role of helper. She looked at me suspiciously then cried at the phone, “No don’t put me on hold!” I used the moment to introduce myself and my background with autism and she let me care for her kids while we waited for our plane. She was a good mom with too much to do and in crisis. She kept an eye on me but let her kids be entertained.

As we boarded the plane someone, meaning to compliment me at her expense, asked me if I could arrange to sit near that family so the whole plane need not suffer.

Sarcasm and an attitude of inconvenience by the onlookers gathers them into a likeminded gang of haters and ridiculers.

Comedies often capitalize on this as comedians complain about crying babies, and sitcoms show the challenge of sitting next to someone “special”.

The problem is as we gather to laugh we are trained to agree. I remember being in a family therapy group and doing some role playing. One of the moms in attendance was incredibly funny. Her humor was very Rosanne show like and full of sardonic comments about her children. They played along. They laughed and responded. And the teenage girl had what others perceived as an unexpected meltdown.

While watching this I understood why my own teenagers had asked me to stop doing stand-up comedy jokes about child-rearing. I also understood the degree to which we as a consumer of entertainment and information are complicit in abuse. I was relieved. I had spent a lifetime looking for a way to intervene in the cycle of abuse and here it was, simple and obvious, don’t participate.

I switched for a bit to being sympathetic rather than amused, but then I noticed another issue: Sympathy makes it bigger too. It seemed that whenever I flooded my system with sympathy I was unable to think of anything other than commiseration, and totally unable to take abuse cycle interrupting action. I remembered how when I was a child my father’s mother had loved listening to me complain about my mom. She was attentive and interested as long as I was complaining. Attention was often lacking in my home so I soaked it up, and complained. I then heard myself. I felt worse and worse which led to my behaving worse and worse and got me punished more and more. Sympathy, it seemed, was like inciting a riot. I stopped.

I even tried hate for a while. I hated abusers, especially those in revered positions of power. And while I was hating I almost hit my little girl who refused to hate with me. Hate it seemed was full of energy aimed at whatever moved. I considered the scene in Mash when Colonel Potter gets fed up with a suicide loving dude and starts choking him. The guy who wanted to die fought to live and I realized two very important things:

1- Television teaches

2- Humans fight for their rights, to live, to love, to hate, to kill.

I decided to choose what I fought for.

I was terrified to do it but I did it anyway:

I decided to not hate, sympathize, or ask to be saved.
Instead I chose to love, save, and admire everyone.

I decided not to use performing, writing, and speaking to become popular and do what was wanted, but instead I write the joke, the story, the song with a lesson to the person who judges.

Turns out people are essentially good. They want a way out of the pain and into pleasure. And like electricity they will take the path of least resistance to get there. With the right information that path will lead you home. And that is good news because…

Here is what I learned:

1. Zero tolerance begins at home.

2. And sometimes miracles happen.

As I chose to choose well, I had zero tolerance for negative influences in my children’s lives. I figured if I could break the cycle of abuse for them, I might break it for all related generations to come.

Many of my children were multiply handicapped, and I was usually single, so most would think I should have asked for help. And I did. But I did it with zero tolerance.

If the choice was smooth a spouse’s nerves or teach my child the correct lesson, I chose my child.

If the choice was to keep the peace with school employees even though what they were doing wasn’t helping. I chose my child and moved.

They grew up fast. There was no time for living in a mess any longer than it took for me to concede we were in one.

When caregivers took more energy than they gave, I chose my children and moved on without their help.

When my career meant my children were left behind I quit, and quit, and quit…

My children were always more important than money, always.

This applies to all children, even if their father is in the NFL.

I chose my children. My children all improved beyond all odds.

Had I chosen differently some of them would be in institutions.

For example three of four multiply diagnosed with fetal alcohol syndrome (they are adopted) retardation and autism came off the spectrum, and one continues to improve. Understand that in my home there was abuse as we learned, we just had zero tolerance for it and so, the story unfolded differently.

So yes, we need zero tolerance of the players in the NFL, the police, the politicians any time they commit abuse. But that type of unanimous decision making won’t happen until we have zero tolerance at home.

Fans have to prefer losing games with kind fathers to winning games with abusive ones. Women have to prefer gentle-men to macho men, and when the police pull you over thank them for doing their jobs. If you want heroes in jobs that require nerves of steel and emotional stability, treat them like heroes for their kinder acts rather than their sensational news making ones.

Stop talking about it and choose your child. Change the story now, by talking about life’s beauty and teaching your children to do the same.

You may be terrified of being laughed at, afraid to act so different, but do it anyway.

My daughters and sons, all eight of them, are miraculous stories worth being awe struck by, they beat the odds.

You can choose the life you want to live in, and then step into it.

If you need help understanding how, seek me out. I am happy to help.

Why do we have to see it or hear it to care about it?

Often we care when we hear about a terrible or awe inspiring event, but it’s only when we actually hear a tape, see a miracle or watch a gritty security camera of real people engaged in actual behavior that we care all the way to our core and are effected deeply enough to be moved to act.

I know this from experience. That is why I am taking cameras with me to work, because writing a book (MIRACLES ARE MADE: A real Life Guide To Autism) isn’t sufficient, people have to see it to be moved enough to be spurned into action. I solved the “people need to see it” conundrum by recording the amazing improvements my brain challenged patients experience and then making it available for viewing (FIX IT IN FIVE on THE AUTISM CHANNEL). TMZ solved the conundrum by showing more truth than it previously had, it went from showing Ray Rice dragging his wife from an elevator to showing him punching her and knocking her out. People were outraged and the NFL took action. Rice was permanently removed from the Baltimore Ravens.

Of course, it had already been reported that he punched his wife and dragged her out of that elevator before we saw it but … well … seeing is just a little harder to minimize or pretend away.

Why?

Because when you hear about something you use your own memory system to imagine the event. That is why you should be careful what type of visuals you put in your memory banks and where you get those images from. You may get them from horror movies or video games. You may also draw them from some moments you observed or were engaged in during your life. The tricky part is that, because you lived through it and then thought about it, you have already created beliefs around it.

The brain is a slippery little organ associating everything it creates with everything it has created before. And as such that punch could remind us of the time our best friend punched someone in high school. Since we forgave our friend it feels right to forgive Ray Rice. We don’t even know why we feel this way, we just do. We relate, we forgive, we love and we hate based on our own lived experience especially when we imagine.

But then we see it for real. No Hollywood camera angle, no similarity to ourselves and think, “How dare he and why hasn’t’ he been fired???!!!” Along with, “Of course I never felt any other way than this, I have been angry all along!” because the brain also erases and rewrites the truth in order to be congruent with our emotions.

The exact same emotional and mental blindness happens to people when they are angry. They behave terribly. This is not an excuse, just a bit of information to help with.

In my opinion there are no excuses.

Since we are all equally blinded we must all be equally agreed that no abuse is acceptable.

I have been very angry many times in my life. I have been blind. Grief especially makes me feel this way. The difference is, I decided violence is not an option. I made an active decision.

I was raised in a home full of kicks, slaps, punches, hair-pulls etc. My family was angry, blind to the truth, unable to hear anything originating from outside themselves. I have counseled many others with all the same issues and dealt with violence from many, many, many, different brain disordered people. And from all that life experience, here is what I am sure of, when violence is not an option and we have practiced alternative choices, we don’t commit it.

Let me say that again. When we have practiced behaving – even through imaging – and violence is not an option, we don’t do it.

The army knows this. That is why they train you to believe deeply and react consistently. Our ability to think creatively is arrested during these extreme emotions but our ability to react out of habit remains.

So practice; being kind, flexible, informed, armed with choices and don’t make violence an option!

It is as simple as that.

When my boys were teens I was on the road doing stand-up comedy with Pauly Shore and company and realized I had finally made it to the point where this could be not just my Canadian persona but my American career. The other comics and I hung out around the pool, went touristing and basically fooled around all day. Then we worked (which is also like fooling around) for a few hours and went out to celebrate.

It should have been awesome, but it wasn’t.

Because … I knew my kids were waiting at home not having the same degree of success and freedom. That was the day I decided to quit performing and become the teacher. I committed to four years without a stage. I took my kids out of school and taught; talking, reading, math, social skills, eye contact etc. Two years later we worked on job skills.

By the four year mark I could return to the stage. The kids had changed that much.

The problem was I had changed that much too. 

I now had new gifts to share. So, I began teaching and healing brains.

When I moved to California I put the two me’s together and became a therapist/performer who speaks, jokes, and sings about the brain. I love it.

But I still miss pure stand-up. Being a stand-up comedian is freer than being a super interesting teacher. When you are a stand-up in a bar or at a club there are no boundaries. Sometimes I wish for that again.

Last night I got it, I did stand-up.
OMG THAT WAS FUN!

Most of the time I tell stories about my son, Dar. I did raise eight children but I mostly discuss Dar. Six of the children I raised were adopted and one of those was Dar. Four of the six were diagnosed with autism, fetal alcohol syndrome and many resulting other disorders. The lowest functioning was Dar. All the adopted children were abused. The 4 ASD boys were also malnourished and severely neglected. The worst neglect happened to Dar. (He was locked in a closet for years)

I worked very hard to help my kids learn. To heal myself and my family I had to address many demons and grapple with science, education, therapy techniques and money (not to mention men). Two of the four improved enough to move off the spectrum, one still hovers in the weird zone of not quite diagnosable but … well … definitely still something. All three of them are independent and have been for a decade.

But Dar is not.

Someone asked why I force him into all my videos (an exaggeration by the way) and expose him to the public at every turn. Here is my reason why:

I was standing at a movie theater noticing all the frightened faces of the people in line as they shifted away from my slow functioning, minimally verbal, occasionally smelly, man son and I thought “This sure would be different if he was the star of the movie.” I giggled to myself to think that “then they would want his autograph.” And got an idea.

The idea was brilliant for a few reasons
1- He wants to be independent and an actor
2- I want to change his environment and make a world of acceptance. If not for all then at least for him.
3- The media generally only shows higher functioning savant like ASD people. Thus these beautiful people are invisible to the general population and remain scary. But, the thing is, once you know my son and others like him there is nothing to be afraid. My son is a wonderful person.

So I put him in my videos, to expose him, to you, so you can love him too. I tell you about him for the same reasons.

The camera loves Dar. It just might work. True I also make these videos to help you, so that you can hear me, but in fact

Dar, is my reason why.

https://www.youtube.com/watch?v=tPhBzBK5Wak

As a card carrying CAmerican people often ask me what the difference is in my two cultures. Of course the differences are many while at the same time few, but if I had to narrow it down to “What makes a country go down it’s particular path on the decision tree of life? How is it that such close neighbors can come out with so many different policies?” it is this:

American culture supports a viewpoint that is more morally opposed to sex than violence.

Canadian culture supports a viewpoint that is more opposed to violence than sex.

These two very different fundamental viewpoints lead to very different outcomes. I am not making a moral judgement, I am a CAmerican— I adhere to both, depending on the context. If I am advising anything it is that one should concern themselves more over the context than the conditioning.

Be aware and purposeful because your beginning beliefs grow a very different style of person, family, country, household rules, laws, rewards or punishments….

If you believe it is bad, that is what you teach. If you believe it is good, that is what you teach. If you believe it is possible, that is what you teach. If you believe it is not possible, you call believing it is possible false hope.

If you believe they can’t or you believe they can, that belief chooses the path.

NOW CHOOSE!

So often we read about the anxiety inherent in autism and the sensory processing issues of the disorder but seldom (if ever) have I come across an explanation of how the processing issue recreates the childhood from one of support into one of abuse even when the people around you are supportive and kind.

Understanding this is the secret to understanding that anxiety isn’t inherent in autism whereas confusion is, and that creates anxiety.

Case in point: One child had an exaggerated startle reflex because his peripheral vision was processing incorrectly and people just “JUMPED” into his eyesight from out of nowhere. Imagine a car showing up in your blind spot just as you try to go into that lane. And now remember the adrenalin rush of danger processing that accompanies the close call to hyper alert you to the situation. Now multiply that by thousands of times per day. If you lived with this problem it would ease your stress and fear to shut out others and keep control of what you took in visually. It would also make the world confusing, because though your brain signals danger and you feel afraid nothing bad really happens. So you are abused by your own brain and every one around you—regardless of kind intent–feels bad to be around.

Case in point two: A boy heard everything backwards as it came in the right ear, and in a typical fashion as it came in the left. In an effort to adjust for the cacophony he favored people on his left and felt attacked by people on his right. Many of his school mates became his bullies because he thought they were trying to make him crazy, making fun, jeering crazy noises at him, and since people never stay on only one side of you, even his friends became his enemies. He was otherwise bright but this sound confusion left him in a state of feeling attacked by everyone, and his understanding of why he felt how he felt matched his experience of childhood, but no one else’s experience of him. He became angry and bullied others because while he was “in charge” and while he was “the one doing the talking” the words were congruent and his perceptions felt right.

When you connect deeply with someone a new person evolves, a kind of third wheel singularity that makes choices in cooperation–and even in discord–with the two of you. I first heard this concept, of all places, while reading the book In Cold Blood: a true story about two men that murdered a family of four living peacefully in the country. The writer explained how neither of these men would have committed this crime on their own, but that when the two of them got together a kind of third personality was born. Once this new shadow of life emerged, deeds that would previously have been impossible became acceptable, and actions that would previously have been morally filtered out are acted upon.

I thought about this A LOT! How often had I become a third person? Many times I realized. How often had I been careful in the creation of that person? Chosen well? Been aware? Seldom. Especially in romance.

I am unlike most girls. I never dreamed of a man who would buy me things. Not roses or chocolates or Lamborghinis– though I did hope one would gift me with children. I never dreamed of being spoiled are dripped in diamonds. I dreamed of working hard and saving people. Still, every year when the words “Will you be my Valentine” happened to find my ears via movies, grocery counter cards or radio ads, they coerced a feeling to stir within me, a feeling of yearning, of wanting, of wishing it were so. This would happen to me even if I had a special someone at the time. The difference then was I knew who to yern for and who to be disappointed in when they didn’t buy me the flowers I didn’t even want.

Romance is tricky.

I should know, I’ve been married five times. Five times by the age of 43 often for the reason noted above: wanting what I didn’t want.

At one point I even dreamed of getting married on Feb 14th in a white wedding dress covered in embroidered roses. I wanted it to take place on a cruise ship that reminded me of The Love Boat. I wanted it most Februaries even though I hate the claustrophobic feeling of cruise ships and deplore dressing up. I do like weddings.

Fact is, it isn’t just me, people don’t always – or maybe never- make sense. They are full of contradictions and emotional responses easily manipulated by childhood dreams, music and imagery. Heck even a camel will cry if you play them the right song. Seriously!

We may think we are strong but when it comes to romance, well, some of us are not.

So I devised a plan: Ask yourself who you want to be, how you like to spend your time, and if another person actually fits into this picture, Valentine That! The picture, the third person, the new reality.

Since you and the person you romance with, sleep with, plan with, work with, talk with, fight with etc, disappear into each other and create a new someone else, design with intention.

If you are wondering what it is that happens to you that could potentially make a new person out of you– they call it focus, but for this article we will call it love. This is because when you fall in love or reach to satisfy any yearning and then do, your nucleus accumbens lights up like a Christmas tree on LSD. This is your brain’s reward center having a party on its favorite neurochemicals. Actually, maybe I should have said cocaine instead of LSD because love keeps dopamine around almost as well as cocaine does, and dopamine is your reward center’s drug of choice.

Romantic love, like the pusher in the back alley, is addictive. Addictions change your brain. In fact all experiences change your brain, but addictions change them quicker and more profoundly by leading us to repeat our actions (in this case, focusing on our feelings and making them grow) over and over again. And as the apple of your eye’s pesky little pheromones infiltrate your brain, you lose your ability to judge and asses logically because your frontal lobes are not paying attention. At this point you no longer respond to warning signals about any aspect of your craved for sexy someone, at least until you are satiated. During this mainlining on love period we all lose a few IQ points by turning off our executive functions and lubricating our Limbic system. Our sensory readings go through the roof as we “feel’ the other person’s nearness, even before we make contact. In a sense our auras extend our bodies into each other. Our brains begin to fire more coherently across the hemispheres like a love seizure of sustained dimensions. So we are happy,giddy and slightly stupid. This is the Valentine drug of romance and while we engage in it we reshape the real-estate of our brains.

If you are lucky enough to find yourself surrounded by an intervention of friends who help you go cold turkey, you may emerge to discover that during your love drunk bender you reshaped yourself into someone you didn’t want to be. You may even of become legally entangled. (Don’t worry, divorce is pretty easy in Texas.)

And I should know, I’m a brain scientist, that’s been divorced five times. They call me The Brain Broad! I think it fits.

Fact is healthy love -which is what you hope you will have once the addictive period of romance backs off — is supportive, stress relieving, joyous, engaging, economically advantageous and mentally enlivening ” it is good for you. I know because all my non-romantic relationships are all of these things, these are the results of love and romance is not required to get them. I am blessed.

However regardless of who you love, you will become someone new. It happens with each person you bond to, with or without romance. So “Who do I want to be?” should be the question you ask yourself not “Who do I want to want me, and what do I have to be to get them to?”

Being strong requires self-love. Being strong in romance, well, I never figured it out, but I suspect it requires choosing a third personality that fits your ideas, beliefs and goals.

Since I learned that quite late while I was “doing romance’ I never asked the right question. Thus, I spent most of my life single, waiting for a divorce so I could try getting married again. Throughout my entanglements I have been many personalities. I have been traditional enough to run cowering to get his slippers, been bisexual, had open arrangements and monogamous commitments. I have been the matriarch, the submissive, the reject-or and the rejected. I have worn many faces as I married against my own true self and tried to become the woman they would want me to be. It never lasted because — as it turns out — I want to be ” well” something unsexy and slightly intimidating. I want to be me.

I love me in fact. I am proud of my many accomplishments and enjoy all eight of my children, even the ones who don’t always enjoy me. (Stop rolling your eyes, they are not from my dipping into it with different daddies, I adopted most of them.) I live to love, just not to romance. In fact, every hat I willingly wear is motivated by love.

That is what I discovered when I did ask the questions. That is when I admitted I don’t like flowers, gifts, chocolates, or dating. I like working, playing, skill acquisition, and creating. I don’t accept limitations and learn myself out of them. I also don’t want a mate, though if it happens I guess I’ll change my mind. What am I looking for? Nothing. What would entice me?: A beautiful third person. This understanding gives a whole new meaning to ménage a trois.

And yes, I know that since I get my dopamine rush from so many other satisfying places in my life, because I am loved and love without libido distortions and projections of romance, I might always be available to work on Valentine’s Day. Fortunately, my heart is in my work. Have a good one.

Remember, keep your eye on the person you create.

PS: If you would like to be considered for the position of spouse number six I don’t care if you are male or female, but if you’re skinny then I need you to be rich enough to buy me lots of lipo because I do hate to feel fat by comparison. Oh, and if possible I would like to be the prettiest one in the bed. And one more thing” NEVER tell me what to do and I will return the favor.

Back when my grandsons were elementary age, and my sons were in their late teens, I went to a self-help course with the intention of becoming a better listener for my children, and less of a suicide pondering junkie. I left my daughter, who was living with me at the time–along with her four young sons– to hold down the fort. She watched her four autistic brothers for a week while I added to the skills that would help me continue to help them. When I returned it was to a messy brood of needy individuals all pulling at me for attention and help.

Let me describe: My oldest son was still unable to wipe his butt or dress front to back and had no language. My next oldest thought he was Jim Carry (no, seriously) and could only talk in random mutterings of senseless humor. Next in line was my seriously bossy, bordering on abusive, hated his brothers except when they were following orders, good at talking but bad at understanding one. And pulling up the rear was my Tourette’s ridden, still echolalic, totally out there youngest.

Of the grandsons (four rambunctious boys who call me Dramma) two were also on the spectrum, though only for a short time. At this moment in the story I would say one had sensory integration challenges, and the ‘star’ of the moment, the grandson who’s words would cuddle my heart and invite this telling, was still autistic-ly in love with Thomas the train. Also, luckily for me, he had language.

We were all together at a resort, and I knew the best way to give everyone a fair amount of my attention would be to distract them with an activity so fantastic and fun that they would naturally be less insistent upon it. So with all the kids in tow, surrounded by a cloud of sounds, bad Jim Carry impressions, wandering words and repetitive Arnold Swartzeneger movie lines, I smiled intentionally and made sure to appear appropriately attentive as we headed to the swimming pool.

I was feeling frazzled. Dressing and organizing and overseeing them as we changed into our swimming gear. (My daughter was catching them as they exited the dressing area and heading them in the right direction.) Finally, I was down to the last child and myself. I entered a stall and my grandson entered the stall beside me. As we slithered out of our clothes we began to make train sounds and talk about the dirty puddles at our feet.

In a moment of silence that I was about to break, this young man spoke a longer, more perfect sentence than I had ever heard come from his lips. “I am glad your back Dramma. My life just isn’t as good without you in it!”

And suddenly I wasn’t frazzled anymore.

Though I do think I might have cried.

When I was married my husband used to sing a little ditty he called ‘Don’t wanna know. Don’t wanna do it!’ He sang this ditty every time I asked him to learn something new like where the washing machine lived. It was a chant I at first found amusing, then irritating and finally insulting.

It is also a chant I have taken up and made my own!

Forgive me, but ever since becoming a global autism expert specializing in neurofeedback I have oft found myself experiencing his truth, because now it is I who doesn’t want to know and doesn’t want to do it.

Let me explain why: When I was attempting to pay the bills and raise my eight children as an amateur standup comedienne times were, to say the least, lean. One day while I was standing in line at the food bank mulling over the conundrum I had found myself in I had a EUREKA! moment. It occurred to me that if I sent out fliers and offered to bring music and comedy into bars, I could perform with and hence learn from ‘the best in the biz’ simply by hiring them. Perhaps, I hoped, I would simultaneously be able to afford groceries. It worked! I did and I could!

My ‘rooms’ (industry term) were generally sold out and comics vied for the opportunity to work in them. I, however, very quickly became too busy booking and finding, mailing and check writing to take the stage. I, for all intents and purposes, was an administrator: Something I have never wanted to be. I closed down the rooms. Then, I swore I would never again let running a business keep me from doing the work I came to it for.

Nowadays I Do Wanna Know and I Do Wanna Do It! when it comes to helping disordered brains. I also Do Wanna Know I Do Wanna Do It! when it comes to speaking and teaching others the techniques I discovered after adopting and then raising so many children off the spectrum of autism. In fact it would feel immoral to keep what I learned during this journey to myself. That is why I wrote a book. That is also why I wrote and perform a comedy show complete with brain science and musical ditties. I even want to spread the word so much that I Do Wanna perform For Free Every April – Autism Awareness Month – And Definitely Do Do It!

But all of this comes with a caveat because I don’t want to run a not-for profit organization wherein I employ people and become responsible for their interpretation of my teachings as they represent me around the world. Thus though I am offered administrative and course creating positions often – nay more than often – on a regular basis, thus though I am also cajoled, lectured at, arm twisted and called uncaring for refusing to pick up the gauntlet. I still refuse. Because I Don’t wanna know. Don’t wanna do it no matter how much it pays.

So please forgive me if I am first amusing, then irritating and finally insulting but I’d just rather do the work than create it. Hopefully you can at least admire me for being clear and honest because – like I said – fact is, I don’t want to do it.

I have recently been inundated with stories of children who were taken from their parents because they were running for the sake of running. One such story hails out of Calgary Canada and tells of a drug free joyous autistic girl who ran off to play forgetting to circle back for home. Dad called 911 and she was found shortly thereafter completely oblivious to any problems she may have caused. She was apprehended and since the children’s aid was not able to help her as she was they chose to drug her – a lot.

Another story comes closer to home and is about a California boy who was tethered to keep him safe while the family was moving. This was reported and the child was removed. (Apparently no one saw that wonderful movie Babies wherein the Mongolians model this type of safe keeping or even bothered to watch most day care centers walking their line up of tethered kids to the park.)

One of my many life goals is to educate the general population and people in positions of authority on what is and isn’t ‘good for autism’. This is because I lived it.

Below is an excerpt from the book I wrote while still in the trenches, solving problems in ways others wouldn’t dare and healing myself and my children along the way (For the record out of the five of us sensory overwhelmed weirdoes only one is still diagnosable.)

Excerpt from Jeff: a sexually realized spiritual odyssey of stepping into love

By Lynette Louise

Pg 31

My poor babies had been rejected so often by so many people. First, their natural parents, then their foster parents, then my husband, my family, their teachers and eventually my friends,

And finally you.

Pg 32

So, there we were, driving home from the cottage,

When my phone rang,

A little ring.

The mom in me was in trouble,

Again.

Rye had been kicked out of camp and apprehended by Children’s Aid,

Again.

You can get used to anything, so my panic was minimal.

‘Why?’ I asked.

Apparently Rye had been running and screaming and VVRROOMING at the top of his lungs all night long. On the second night the exhausted camp counselors gathered Rye’s brothers together and asked for advice. They had been trying to reach me but none of the numbers I had left were of any use to them. So they turned to my other children for help.

“Does he do this often?”

“Lots and lots.”

“What does your mommy do when he acts like this?”

“Tie him up.”

I was in trouble.

Again.

Poor Rye, he was just too wound –up to stop moving, even for sleep. Dar was the same. Something about autism and sleep doesn’t mix. However, Rye was close enough to normal to get me in a lot more trouble than Dar.

Because Rye was close enough to normal to be irritating.

And because Rye was dangerous.

Because he was fixated on so many hazardous things like heaters and furnaces and tailpipes and hanging out of second story windows. And of course there was that destructive savant in mechanics that led him to want to take everything apart but never put it back together again.

He was my challenging little “Houdini from Hell” whom no lock could keep in, or out, or even slow down.

Sleep deprivation, destructiveness, fixations and an inability to restrain themselves are common complaints with autistic kids. People who deal in children’s services should know all about it. But they seldom do. So people like me, with children like them, get in trouble.

Of course I’d known this would happen, had seen it coming. That is why I had had the doctor prescribe a bed harness to keep Rye safe and make him stop sneaking out in the night and going into other people’s houses looking for heaters.

He was only four years old. He needed to be contained somehow.

I knew how to prevent Rye from getting out at night but I also knew that whatever method I used needed to be approved of by a recognized professional. Otherwise I’d be called abusive and my son would be considered at risk. How ironic!

Because my son was at risk I had to keep him safe, which put my son at risk of my keeping him safe, which put me at risk, of getting in trouble for preventing him, from running the risk, of coming to harm.

So I had gone to the extra trouble to involve the doctor and make my parenting legal. The contraption he sold me was pathetically ineffective. However, it was medically prescribed, which made it superior to anything I could come up with in its ability to keep me out of jail.

So I bought the harness for my protection from accusations, and created my own device for Rye’s safety from fires and falls. This type of social politicking wore me out even more than my kids did.

I felt that I should have been able to be honest and just do what was best for my son without fear of persecution.

But the undesirable world of “Woe Is Me” is papered in. “Should Be Able To’s” so I just dealt with it by accepting the fact that such was not the life for the single Canadian mom of four special-needs sons.

So there it is … I tied him up …. kept him safe …. and he got better!

My 26 year-old son is visiting me from Texas and the difference between Texas and California in relation to the price of gas has been a subject as of late. So it isn’t surprising that as we drove away from the pumps noticing that our twenty dollar purchase had barely moved the needle on the gauge we were complaining about the cost of rotating ones tires down the road.

Now when Rye was 2 years old he was diagnosed with infantile autism, fetal alcohol syndrome (not my fault he’s adopted) and retardation. Since then he was come a long way. He is independent and runs a small business mowing lawns and doing handy work.

He has also driven across the country and loves all modes of transportation except the GreyHound bus.

OK back to the more present moment. I said “I can’t believe its 4.21 a gallon! That is so expensive!’ Rye said ‘Ya its ridiculous’ I said ‘Totally retarded!’ Then I quickly turned to him and pointing my finger said ‘Just like you used to be-‘ we laughed with glee at my wit.

NOW HALT EVERYONE! Before you get all offended, understand that in my house no words are off limits, no diagnosis is unbeatable and all concepts are explained. And trust me, when it comes to Rye, I’ve done a lot of explaining. He has had a pretty bizarre view of things. Fortunately as a result of all that clear talking Rye is comfortable with the word retarded. So we laughed at the joke together. After all it is something I just said he used to be not something I just said he was.

Finally our giggles subsided. Rye changed his tone to serious which indicated to me that I should listen with a less frivolous ear. “Actually mom I think I was more reality retarded than retarded retarded!”

I was impressed by his insight.

You don’t have to know much about autism to know how completely brilliant and ‘off the spectrum’ that statement really was. He continued, “ I used to think I would get a million dollars for mowing lawns or a billion for inventing a washing machine. But someone already invented washing machines and I was looking at one when I got the idea. Yea I think autism should be called reality retarded!”

Me too son! I think he just graduated from retarded to inherently wise.

One of my sons is 29 years old. When he was 23 he was essentially mute. Ever hopeful, around that time, I began a new therapy in search of his voice. April 2nd is global autism awareness day. It is also my birthday. This year it was also the release date for my new book called MIRACLES ARE MADE: A Real Life Guide To Autism. All of that is the background story to this:

Now one would think that having a release date set in stone means I also had interviews to address, parties to party at, and book unveiling ribbons to cut that day. But in fact it simply meant that April 2nd was the day Amazon would have the copies online. It was a weird feeling due to the anti-climatic – What now? – nature of the eventless event. There was a Twilight Zone aspect to the confusion in my emotions. You see the thing is, I believe strongly that I have written a book many, many people would be benefited by reading. So I am excited to have it available and unexcited to have it so quietly so. Thus, I sat on the couch drinking my coffee and sing thinking WOW! Happy Birthday Book Release Global Autism Awareness Day to me. My 29 year old put his arm around me and said, “fwum fwine fwurse fwesant fusic” … he likes to start his words with an f.

It was a surrealistic day. One of my other sons donned a sparkly blue sign and took some sparkly blue boxes full of matt finished books to Venice Beach where he planned to sparkle for the cause of autism (and make some money in the process). He walked up and down the bike path harking “MIRACLES ARE MADE … MIRACLES ARE MADE half price in support of Global Autism Awareness Day”. I’d like to think he wore the blue flashlights on his shoulders and did the day sparkle walking and selling my new book as a way of supporting me and celebrating my birthday but the fact is – though this son is no longer autistic – he is still awfully selfish. So I know better. I know he was selling and sparkly spouting simply because I had told him he could keep any dollars he made. I know that because this son is money motivated (which is a good thing because that makes him normal.)

My seventeen-year-old grandson lives with me. He sang me a song but only after his friend told him to. In fact his friend brought a cup of McDonalds java to my door. I love McDonald’s java. I considered grand-parenting the friend instead.

Howard – a bipolar – comedian friend occasionally stays at my house and barters unfinished construction projects in my garage for brain therapy work. He took himself off to an AA meeting for most of the day. Now I know AA meetings don’t last that long but still, in a way, it was the gift of silence.

My grandson beat it out the door with his friend. My 29 year old pulled at me and “fwum fwine fwurse fwesant fusic” f’d in my face.

Now the thing about Dar’s language is it is easily decipherable when you stop and focus and if you aren’t tired or jet lagged. But if you are sinking in a cloud of low grade stress because your still kind of weird used to be autistic son is selling books on Venice beach and possible setting himself up for a mugging … well then, Dar sounds like a bunch of Germans speaking gibberish with lips under the influence of novacain.

Eventually Rye came home having sold all of two books – which barely covered his gas – so I contributed to the fund with a twenty-dollar bill and went to bed glad to have him home. (By the way Rye has his own apartment in Texas and was just visiting. He does well on his own and doesn’t need me to watch over him but whenever he stays with me I regress into caregiver and overseer regardless of my intention to do otherwise.)

The next morning Dar woke me up. He was pulling me out of bed with force. He picked up my black pocketbook and put it in my lap saying ‘your furse’. Yes Dar its my purse. He pulled me to my feet ‘Fum’ Dar I don’t want to come. I am tired. I layed back down and he pulled me back up. He handed me my bag, ‘Your furse!’ At this point I realize he wants me to take him out and buy him something – probably music – but I really don’t want to go. It is 6 AM.

Dar is not normally this insistent. In fact usually he is a giver upper – if you don’t understand him he quits talking – and that is one of our problems helping him.

He pulled me to my feet again and we played out the scene several more times before I finally said ‘OK obviously you want something! Tell me what it is and we’ll do it.’

‘Your Furse For Fantastic Fwesant For Your Firthay!’

I hope you are crying as you read this because you should be. He is 29 years old.

It took him Dar days of trying but he was finally able to speak well enough and I was finally focused enough to listen carefully enough to hear that – of all my autistic kids – he is the most selfless albeit the least gifted

As he dragged me from the house – carrying my furse and feys for the far – Mr. Bipolar -who had finally returned from AA – made a smartass remark about the way Dar was holding my hand as if we were sweethearts and Dar said ‘fiiiet!’ as he pushed me into the car.

It took a lot of listening but he finally got it all across to me:

My son – who couldn’t talk until we started neurofeedback in 2004 – took me to my favorite scenic spot with a McDonalds foffee for me and a fuice for him. We bought a lottery ticket to dream about and listened to fusic as we sipped our beverages.

And even though I paid for it I’d have to say that he was right!

That was one FANTASTIC FWESANT FOR MY FIRTHAY!

So I work a lot! So what? I like my work. But I also like looking young enough to do it. The thing is I play with kids for a living. I jump around and act silly. Which would be okay except occasionally I glimpse myself in the mirror and mistake myself for a member of The Wiggles. (It’s a bunch of old people wiggling). Fortunately I am all woman so no one has ever accused me of actually being one but still… it could happen.

So I found myself at the plastic surgeons office! So what? He told me I didn’t need surgery. That was nice! I explained that kids actually respond to me better without all the ‘crinkles’ (as my daughter used to say). I explained that having the kids respond to me was a necessity if I was to guide them out of their mental stress which was the reason I was playing with them in the first place. He said, “Well I have a better idea. Fact is I’m not really a surgeon any more. Technology has changed all that. Now-a-days I just buff and puff.” He went on to suggest a very intense peel.

So I like the sound of a good catchy phrase! So what? That is why they call it a hook. To hook people into being caught by the catchy phrase. I made an appointment, handed over my savings and waited to be buffed until I looked as good as my children do. While he was passing the relatively painful apparatus over my face I got the giggles (ok I was high) and kept singing the phrase ‘buff and puff buff and puff buff and puff’ over and over again in my head: like a stoned little engine that could. Buff and Puff Buff and puff buff and puff …

Happily I was avoiding the puff and had in fact decided to just get buff mainly because it has always sound like a good idea to buff up whereas puffing up sounds like a person plump with painfully persistent flatulence refusing to flap away.

So I thought he meant buff the skin then puff it with botox which I wasn’t gonna do so I didn’t expect to puff! So what? Who hasn’t gone to the doctor only to get home and discover that they look like Margaret Cho???

Okay. Okay. Apparently when the doctor says “I buff and puff.” He means “I buff and you puff”. And apparently when you puff this much the only way to breath is to huff because your nostrils are too swollen to pass air between the passage way.

I sure do hope the kids like me better now.

I was staying at my daughter’s over the long weekend presumably to help with the twins but truthfully I really just hung out and played. It occurred to me that a ‘good’ mother would be doing dishes and working around the house a bit but personally I prefer to play. So though I didn’t feel like sweeping I was definitely looking for an opportunity to be useful. It was bed time for her older girls and I was standing in the kitchen wondering what might be the most impressive action for the smallest amount of work. The answer came from my daughter who called for me (in a rather trepidations voice) from the other room. She was carefully unzipping her eldest child’s back pack. “There is something in there.” she whispered. Fearing that whatever it was might run out I felt the tingling nakedness of my very bare feet. (Personally I don’t really mind coming upon unexpected critters – unless of course I come upon them with unadorned skin.) Her daughter came into the room and my daughter yelled for her husband to come help.

Her husband hesitantly moved about the bag making quite a show of things. I suggest that there wasn’t really anything there. My daughter assured me that I was wrong. “Oh No you have no idea how absolutely certain I am that there is something in there.” I asked her why she unzipped it in the house if she is so sure it was alive inside and she mouthed words over her fixated with anticipation daughter’s head “This is more fun.” Being a combination of someone who was half raised on a farm and preferred excitement to boredom I proudly thought “Yup she’s her mother’s daughter!”

At that point we both returned to watching her husband very carefully move the bag out the door and then move way up as he kind of tapped it with a stick before jumping backwards. My granddaughter voiced her thoughts with amusement “Not a very manly man!” and we women stifled our giggles. At that point all the apprehensive approaching of her bag lost its fun for me and being a woman of action who was looking for a job I stepped forward and turned it upside down- carefully aiming the critter away from my feet should he in fact be in there. My granddaughter continued to narrate “Dramma’s braver than Tim!” I puffed up my chest and smiled happily to myself. My previous lack of helping had been vindicated. At that point an enormous black RAT!!!! zipped into the yard and we all girly screamed into the house.

Overall it was a pretty satisfying weekend. After all, I got to play with kids, feed babies in the night, retain my position as ‘the heroic she who goes first aka been alive the longest = pretty tough bird” and completely avoid housework. Perfect!

Some people say that I knew what I was ‘getting into’ when I adopted four spectrum kids. The implication I believe is that ‘knowing what your getting into’ eradicates any empathy for the problems encountered while ‘being in’ whatever it is you are getting into. In my case those problems would translate into ‘challenges raising my crazy kids’. Personally I disagree with this concept. Fact is I didn’t know and it doesn’t eradicate. But even if I had known (what I was getting into) even if I had been able to see the future I still would have done it … maybe even faster. But don’t kid yourself … that doesn’t mean it was easy.

It does mean that I now posses a very unique perspective on life and have special criteria for happiness. Like last year when I spent 24 hours riding cloud nine because my 29 year old son put his underwear on standing up. (Quite a feat of self-control and independence for him.) Best part was the happiness spread: When I shared the news with his sisters they were almost as happy as I was. In fact his nieces and nephews were also impressed while his no-longer-on-the-spectrum brothers took it in stride but complimented him for learning.

Since Dar is such an amazing good luck charm my family is blessed with this type of good fortune. Again the best part is the blessings spread: Dar – via hi disability – teaches me. Everything I learn from him gives me blessings. And then I pass it all along by teaching others.

Of course I am not just blessed by Dar I am blessed by all my children and grandchildren and all the children I happily help internationally. Best part is when the blessings come back to me in the form of them learning what I teach: independence. And now we get to the point of my blog. Last week Dar and his seventeen year old flew from Las Angeles to Dallas. They had to change planes and find their way through the airport together. The entire trip was uneventful.

Amazing: From standing up for underwear to standing in line (without an authority figure) for a plane. What a difference a year makes (even in the adult child)! And now that he can flit around the country visiting sibling after sibling “What am I going to do with all this freedom?”

This week I got a black eye maybe next week I’ll just stay home and write another book 🙂

THE CIRCLE OF LIFE

Dear Brent

(May 27 1951 – April 9th 2010)

Hello Hon I am writing posthumously because, as you know, at this point, there is no other way to say thank you. Without your help I may never have found neurofeedback because I wouldn’t have had the time. Sure I know why you offered to help me co-parent Dar. I know you were looking for a way out of your depression, your basement apartment, your co-dependent situation with your sons, it doesn’t matter that it helped you to help me, it matters that you helped me. Strange isn’t it that we began as each others soul mate spouse way back in my early teens then circled away tried other ways of living with other types of people and then circled back to being together again. Strange that we co-parented not only our children but also my children that became yours. Thirty-six years of make-ups and breakups is a lot of history hon. I miss the way we laughed for the first hour of every morning coffee in hand.

Any way I am writing not to say what I miss but to let you know that you were wrong (Big surprise! Even after death I want to point that out ☺). Turns out the circle of life you left behind had nothing to do with the grand twins though I am glad you got to hold them before you died and to be with them only days before the end. True it seemed like an eerie tap on the shoulder by the circle of life for our daughter to be having two babies while saying goodbye to one dad. I loved the way you joked right up until the end that if ya gotta go nice to know it took two souls to replace you … “kind of a twofer for life”.

Turns out though your circle of life gift has more to do with Dar the boy I adopted without you than with the twins. I feel sopping wet with gratitude for the life you gave him when you came to re-live with us and also for the gift you gave him when you died.

Dar was my son to help but I needed someone to care for him while I gained the skills necessary to help him with. You returned to me when I needed you most. Thank you. You helped me reach him, teach him, care for him. You freed me up so I could free Dar. He was twenty-three at the time. He began to talk though not well enough for you to witness. Then at twenty-four, twenty-five, twenty-six, twenty-seven he slowly gained clarity, new self help skills and the heart of a man embracing his family. It was you along with our daughters who moved in and out of daycare, helper and witness to the miracle positions while I ran around making a living and learning to live. At twenty-eight Dar watched as you slowly died in front of him.

This man, who shows emotions like love, gratitude, anger and boredom was tearless. In fact he hadn’t cried since the day they took him from his birth mom in1983. Not until you died. A week after your passing Dar heard sounds (TV) coming from the room next to him, the one you had lived in. He threw open the door franticly searching… and wailed.

I held my son for hour upon hour as the crying sounds of a wounded terrier emitted from his chest and lips. He’s been ‘more real’ ever since.

If I thank you for anything I thank you for that… completion of life, your death gave birth to, in what by now must be referred to as ‘our son’.

Sleep well my darling.

One twin was out. She was surrounded by and being cared for by multitasking hospital maintenance/pediatric personnel. She seemed small but fine. The other twin was lost. Or more accurately – hiding – somewhere in my daughters uterus. A short stocky famously dedicated Asian obstetrician sat on a stool between my daughter’s thighs muttering “Why I can’t find the feet?” Her hand had slid into my daughter’s vagina and kept on going. At this point in the story her arm was buried up to the shoulder while she visibly fished around my daughters female cavity bemoaning the loss of baby number 2.

The doctor kept saying she needed to get a hold of the feet before the uterus closed and I held my breath afraid that our fiasco might end with a dead from hemorrhaging daughter of mine. Sure I wanted to scream “JUST GRAB THE FUCKING TWIN BY WHATEVER APPENDAGE YOU CAN FIND AND PULL!!!!!” But more than that I wanted to push her aside and do the job myself. Fortunately I have healed my frontal lobes enough to maintain at least an essence of impulse control. So, I didn’t. I was good. Because I knew my daughter was best served in this moment by my decorum and a lack of attention seeking behavior. I instead tightened my muscles into non-reactive behavior and almost passed out. My head swirled with the hypertension of the moment as one thought spun around me “NOT MY DAUGHTER! Not My Daughter! not my daughter.”

Let me back up.

Brandessa had almost reached her due date when a team of doctor specialists decided that the littlest twin was at risk and they had to induce. No one was surprised. We had all been watching these adorable bunk mates grow molecule by molecule via high tech ultrasound from day 1. Hers was a high-risk pregnancy that began with bed rest to heal a torn and bleeding placenta. At one of her weekly visits the doctor diagnosed her as officially having a ‘shitty’ placenta. The pregnancy remained complicated for the duration. Near the end what the doctors were most concerned about was any quickly grown chasm in size between the twins. (A speedily created gap would indicate twin-to-twin transfusion and put them both at risk.) The chasm had begun to spread apart like the two halves of a separated train so the twins were induced.

Brandessa’s two older daughters were with their dad (Brandessa’s previous husband) for the night because due to swine flu fears of the day all children had been disallowed from attending hospital births nationwide. Thus there were five of us in the lovely pseudo bedroom furnished with a bed a couch and two chairs.

On the couch Tsara, Brandessa’s older sister, was horizontally spread out while Brandessa’s dedicated doctor slept vertically at her feet. The room relaxed into the gentle pace of support as the soft snoring of the two synchronized into a deep and rhythmic message signaling the undulating flow of life. Brandessa’s husband and I moved in and out of the main support position rubbing, fetching, helping, talking, waiting.

Brandessa reluctantly received her epidural (our family does it drug free) only because her doctor said that was the only way she could ensure that the muscles of the uterus would stay relaxed enough for her to get the second twin out vaginally. Brandessa didn’t like the way it left her feeling separated from the event but the epidural turned out to be an important choice given the amount of time the doctor was about to be shoulder high and searching in my daughter’s womb.

Every detail of the ensuing hour left me feeling incredulous, terrified, relieved, amused and filled to overflowing with admiration. I will share some of the highlights:

1-Brandessa’s doctor woke up checked the cervix and said “Only eight fingers!” She then plopped back onto the couch and back into sleep. She fell into her dreams even as I explained that in our family eight fingers means we have about eight seconds before the pushing begins.

2-Eight seconds later Brandessa said she wanted to push. I woke the doctor “She wants to push. “ I offered to deliver the babies (I have been midwife to four of my ten grandkids.) but there was no need as this funny yet wonderful doctor popped awake as easily as she plopped into sleep.

3-“No Pushing! No Pushing!” The doctor wide-awake insisted. My daughter was wheeled into the OR as a precaution and we – her entourage of three – followed.

4-The three stooges comedy of cooperatives ensued. As we entered we were told to leave, as we left we were told to enter, as we gowned up we were told to gown down, as we gowned down we were told to gown up and all along we followed where we were led in the hopes that a non combative stance would ensure our presence at the monumental moment (or in the case of twins: moments). After several misguided attempts we made it into the right gowns and into the OR where we took positions of support around Brandessa.

5-During this commotion the air-conditioning duct caddy corner from my daughter’s head broke. It was blowing contaminated air and snaking about like a pressure hose on the loose while all the pediatricians tried to grasp and fix it. Eventually there were four people taping the duct while the doctor between my daughter’s legs shouted for the ultrasound guy. He had apparently wheeled it into the room, dropped it out of reach and left. It was about this point that I first began to feel faint. Because I am used to taking over when things aren’t going well and since I knew that in this case my taking over would merely divert everyone’s attention onto dealing with me and that could be disastrous I contained my desires and increased my blood pressure. I quietly crouched to the floor and listened to the blood whooshing chants in my head “That’s my daughter. That’s my daughter. That’s my daughter.” As I stood up the maintenance folks turned back into pediatricians after taping the duct closed and the first baby crowned.

6-Daddy cut the umbilical cord and the doctor slipped her hand into my daughter’s vagina….

The people who were supposed to stay had left and the people who were supposed to leave had stayed. No one could find let alone run the ultrasound equipment so the doctor was blindly ferreting through my daughter’s innards in search of the second twin’s feet. She kept fretting about the uterus closing. My daughter’s eyes beseeched me as she mind over matter kept her muscles relaxed. She looked into me begging for me to be able to see something from my vantage point that she could not, “Mom is my baby ok? Can you see her?” There was no need to shake my head she saw it in my eyes, ‘No baby your baby is not here.’

This is the point at which I originally brought you into the story and the moment that I am writing about. It has been a hard won lesson embracing the expertise of other’s in order to gain more expertise of my own because I always believed there was some inherent compliment to having known without having learnt. It’s a childish belief I took many adult years to let go of. That is why so often in my life I have had had to reinvent the wheel. Thus, I would like to pretend that the reason for this blog is to share the importance of working together in trust and admiration of each other’s skills, I would like to say that having so many helpers cover so many areas of possible need created the inevitability of success because we worked as a team and pitched in to save lives. I would like to pretend that’s how it went because that is the lesson I try to teach in the world. But that’s not how it went. Some people goofed up and others were skilled enough to cover their mistakes with solutions. So I confess this blog has a different purpose a purpose of confession.

True I was blessed by the example of commitment as I adored the doctor for sleeping in my daughter’s labor room instead of in her own home too far away to help my child. Blessed by the lesson of being present to the moment when said doctor awoke into a burst of action. Blessed by the lesson of flexibility according to need, as she accepted help from me the laymen (I pushed the uterus until I was pushed aside by the usual uterus pusher). Blessed by the pediatricians that jumped into creative action with no concern for job description as they caught and taped the air duct. But those lessons were not the lessons I hadn’t already learned and so are not what I am writing to share. The lesson I am writing to share, or rather to confess is the one that surprised me.

In the past (when it involved me or a character in a movie or a mom in a news clip) I have always known that the absolutely right choice when picking between lives was the life of the baby. But, until that moment, it had never occurred to me that the baby might be mine, giving life to hers.

My heart had not been asked to feel its depth for one of my own children in a very long time. I embrace, teach and help other children daily and my life, as of late, is more filled with the children of the world than the ones in my home. I love all the babies and children I work with internationally. In many ways they are easier to love because I am always choosing what to do next with an unconflicted heart. I have been doing this for so long that I’ve gained a great deal of distance from the confusion of the front lines at home. I teach parents how to embrace and heal their children from a place of clarity. But in that moment of looking into my daughter eyes, in that moment of internally pleading that she live, that her shitty placenta not prematurely separate and cause hemorrhaging, I would have done anything, made any choice (assuming it were mine to make) as long as that choice kept her in my world to love, even if that choice steeled her heart into hardness against me. My own heartbeat filled the room with fearful anticipation, time slowed, and the question of outcome hung in the air.

Fortunately, no choosing of who, was necessary because the doctor found the feet, the baby was born, blue, and then pink, silent and then breathing. The mayhem moderated and all the extraneous onlookers went for coffee. Life began to normalize. Brandessa’s placenta took its time being delivered and as I said I even got to help a little. But in the end all went miraculously well and I never had to tell anyone the choice I would have made … not even me… until today.

Today I set the baby into the swing. I excused myself from holding that second twin who loves me so completely and cried buckets in the bathroom hidden from my family’s eyes.

I teach about and work with individuals who have autism. I help people around the world via the Internet and also travel Internationally in order to be hands on as I teach and heal. Thus I am often exposed to exotic viruses. For example I hugged a Rhino (nothing to do with autism) and got a Rhino tick parasite that invaded my gallbladder and pancreas. I also got a cow parasite when I drank cow’s blood with the Maasai tribe in Africa (Not my fault. My mother always said, “Clean up your plate. Don’t complain. And eat what they give you!”). That parasite invaded my liver, lungs and brain. Most recently I was blessed with a mosquito virus that inflamed everything everywhere: brain and body. In each of these and other instances I have had to research my symptoms and then seek medical attention for the problem I have already diagnosed myself as having. This is because none of my doctors are well versed in foreign medicine (though that never stopped them from doing irrelevant tests at my expense). Besides, fact is, only I can connect the dots because only I know all the little Rhino hugging details of my life.

Thus, in the end I have to do the research, find the cause and sometimes even create my own cure. Since my only clues were my symptoms I used those. Fortunately symptom following in order to solve the problem is how I approach the puzzle of autism. Fortunately I am quite skilled at it.

This blog is about Chikungunya. It’s a disease. I got it from an insect born virus that is transmitted to humans by the bite of an infected Aedes mosquitoe. This particular mosquito, the one I squashed on my shoulder, was a native of Bangalore India. Perhaps he was trying to be hospitable, you know, saying hello. Unfortunately his welcoming kiss filled me with poison. Also unfortunately there is no actual test for the disease nor any medicine if you do have it. There is also no comprehensive list of all the symptoms I could expect to endure. When searching the Internet and Doctors brains for information all I was told is that ‘it has symptoms similar to dengue fever: CHIKV manifests itself with an acute febrile phase of the illness lasting only two to five days, followed by a prolonged athraligic disease that affects the joints of the extremities. The pain associated with CHIKV infection of the joints persists for weeks or months, or in some cases years.’

In the course of trying to help myself I came to understand that an enormous number of people are infected and subsequently affected each year by the bite of this miniscule little bug. Pre bite I was extremely healthy and strong enough to swing from a trapeze. Post bite I was immobilized. This virus was so insidious and devastating that neither I nor the other mom who was bitten could prevent ourselves from thinking we may be about to die. In fact, occasionally, we wished for it. For the longest time I didn’t even know what I had. Research brought to my awareness the fact that there is very little help or clear symptom reporting being made available to the general public of India or Australia (where the Aedes mosquitoes reside). No matter how hard I searched I could not find a road map for what to expect. So since blogging is an Internationally distributed medium I am writing it down.

In the hopes that I might ease the uninformed worries of the afflicted here it is … my story .. corroborated by the fact that two of us were bit at the same time.

I was working in India with a family whose child has autism complicated by seizures. I was there to get her talking, co-operating and reduce or eliminate her seizures. It was day five of a two-week outreach when her mom and I decided to go out for dinner. While eating in an outdoor restaurant we were a little bothered by mosquitoes so chose to cut the dinner short and head home. Besides, truth be told, these outreaches are intense for both the parents and I so we were tired. The next day I felt a some flu like symptoms so asked ‘mom’ if she wanted me to continue working with her child as I could be coming down with something contagious. She asked me to keep working. By noon my knees were hurting and at the end of the day I felt a fever coming on. As she drove me back to my hotel she mentioned that she thought she was getting a fever and that her knees were hurting. We were surprised to compare notes and discover that we felt the same exact symptoms. This symptom sameness was a coincidence that would remain for the next four months even after I left her country for my own.

I know these similarities were not the result of information sharing between us or even environmentally set up expectations. Because of our different time zones we barely communicated and whenever we did it was about her child not our health. True she couldn’t help but be informed by folklore as she was surrounded by countrymen who were familiar with the disorder. But I was not. In fact for the longest time I didn’t even know what I had. Still regardless of this lack of illness enhancing communication, regardless of our different genetic makeup, different diets, and totally different environments … this mom and I remained the same, symptom after symptom, for month after month. That simultaneous synchronicity despite our obvious differences is why I believe we have unique knowledge on what symptoms to expect when afflicted with Chikungunya.

That night I had a fever that oscillated between 104 and 106. My hands and feet curled up, swelled up and turned blue. I looked a little like an elephant. Not only due to the fat round blueness of my hands and feet but also because my nose began to swell and change color. In fact my newly created elephant trunk became so huge and the swelling spread so much that it changed my eyesight. Halfway through the night I realized everything had begun to blur. So I took off my glasses with my forearms. For the first time in fifteen years the world was crystal clear. If I wasn’t so weak it would have been fun to watch a little TV with these eyes but fortunately I didn’t have to feel bad about that because my hands were too bulbous to work the remote. My ears began to ring and the world began to spin – which made me vomit in the garbage can next to my bed. I was too weak to walk, too awake to sleep and too much in pain to move. I knew I was dehydrating but I couldn’t even hold a cup let alone open a bottle of water. My kidneys stopped working which was possibly a blessing since I couldn’t move well enough to get to the bathroom anyway.

I called to say I was too sick to come to work and discovered that the mom had been sick all night as well. They offered to take me to the Dr. but I was just too ill to get out of bed. Add to that the fact that I had seen news reports on all the special needs children that had been buried up to their necks in a standing position for the past ten hours because the lunar eclipse was expected to repair their damaged brains. Needless to say between that information and my delirious state I was a little dubious about seeking local medical attention. Besides swine flu was the panic problem of the moment and sick travelers were being grounded. I didn’t want to be stopped from going home by a doctor’s report. So instead of going to the doctor I asked them to tell me what he said. He suggested painkillers and sleeping pills. Fortunately I was equipped with ibuprofen.

It took three days for the fever symptoms to lighten. I wasn’t really equipped for self-medicating but I did find three caffeine pills in my purse. I took them along with six cokes and four coffees. I believe this is what got my kidneys and bowels functioning. Then on the third day I was able to do neurofeedback to lessen the brain fog, stop the vertigo and regain some energy. Thus I got myself back to working (slowly) with that sweet little girl for short half hour periods (as opposed to three) then offset my playing in the playroom at a piddling pace by teaching the family more about the brain and how it functions in autism and seizure disorder. I survived those last three days of work by eating only lemons, garlic pills, ginger root, coffee and Tylenol. I followed that healing prescription with a nightly two hours of neurofeedback.

On the forth day I grew a body wide heat rash. Then I covered myself in makeup and prepared to evade the swine flu border Nazis by loading myself with fever reducer. I headed for home.

Over the next twenty-four hours of flying time I tormented the people beside me as I scratched and jumped about restlessly: It felt like my entire body was being attacked by fire ants and chiggers and I could barely prevent myself from slapping these non-existent insects. This phase of my discomfort lessened after being home for two days then over the course of a few weeks disappeared completely. My skin began to peel off my elbows first, then my knees, then my hands, legs arms and eventually my feet (huge chunks that flew into the face of my most grossed out pedicurist). Throughout this entire period my feet and hands remained swollen and discolored though less and less so. I had zero energy in my wrists and fingers and could not open anything without using my (very expensively capped) teeth.

One night about two weeks after meeting that maddening mosquito I was awakened over and over throughout the night by someone with a sledge hammer smashing my arm, my other arm, my knee, my other knee, my neck, my thigh, my this, my that, my this, my that my …… night after night, day after day.

OK it only felt like someone with a sledgehammer but boy oh boy did it ever feel like it. I could barely walk and was literally moving my feet about an inch at a time. I could sit to pee but rather fell onto the toilet and then gave up n wiping as soon as the need arose. I basically sat still for three days before I was well enough to go to the Doctor. He tested me for many things and called to tell me that my inflammation markers were very high so ‘yes’ I was really in pain. REALLY! The next day the pain began to pore out of my body as quickly as it had come. After three hours of dissipation I was myself again, sort of. I still had all over body pain but it was bearable. My word retrieval was really challenged for about six months and my energy level was extremely low. The vertigo kept trying to return and I ran sporadic fevers. Fortunately my jobs mostly landed on the days when the pain was at its lowest so I was able to keep working and teaching by maintaining clarity through the use of daily neurofeedback. (I did have to cancel a film shoot but otherwise at least my illness blessed me with good timing.)

Now don’t go thinking I’ve told you everything. Pain, swelling, fever, nausea, peeling, vertigo, tinnitus, eyesight changes and stinging skin weren’t the extent of my symptoms. I also had little hard nodules under pads of my palms. The ones on the left hand left quicker than the right and eventually all I had left was a little sand like crystal under the skin on the bone of the right side (palm up) of the wrist of my right hand. Overall my whole right side was more affected than my left … my eyes, my ears, my dizziness, my hands, my fingers, ankles, wrists and toes all more swollen and painful on the right. My hair began to fall out in big clumps and the 10 pounds I dropped piled back on bringing another ten with it. On the upside my body began using its glucose more efficiently and I was able to go off my ten yearlong diabetes diet with no negative results to my insulin levels. The arthritis attacks cycled every week for three days of unbearable pain and four days of bearable pain. And every time it cycled it lessened ever so slightly in intensity.

I returned to India to work. The little girl was doing and responding positively to the neurofeedback. As the mom said “We are over the moon with happiness she talks so much!” Then we compared notes on the chikungunya. It was amazing to see that our symptoms had been exactly the same, everything from the timing of our attacks to the order of appearance in our symptoms. Her right side was also more affected than her left. It was as if there was an unchangeable order of operations for the course of the illness. She was early thirties I early fifties she was of Indian decent I a Heinz 57 model and still though we were different we were the same. Heck we even had the same painless sand crystal in our right wrist for the exact same length of time. We compared notes while handfuls of hair continued to fall from our heads.

The only place wherein we differed was that, though we had both been struck by a devastating malaise, I had recognized this unmotivated state filled with sadness as illness. I treated the problem with neurofeedback. She had simply bought in to the emotions and thought her life was the issue. So in this way her journey was tougher than mine. In fact the way we treated the disorder was the only thing that separated us. I used my tools to help these symptoms and thus my mental functioning while she fell deeper and deeper into depression, dizziness and pain.

I treated her emotional symptoms till we were both laughing at how similar to pregnant women we were when trying to get out of a chair.

At present (four months after being bit) I still have wrist and ankle pain and the severity has begun to move from my right side to my left. All the lymph lumps are gone and I only need to do brain treatments about once a week to keep the malaise and dizziness at bay. (Though if it moves into my left temporal lobe my problem of word retrieval could progress into blithering idiot speech.) I can finally open a bottle without using my teeth and have begun to alternate feet when descending the stairs most mornings. I still can’t hold my own weight with my arms but I can lift my 8 year-old grandson as long as my back is supported by the wall. So I am improving quite quickly. And as I improve I am able to help myself with anti-inflammatory foods and exercises, followed by brain therapy and ibuprofen. But that is because I figured it out myself not because the information was available.

At present the vertigo almost comes but doesn’t quite hit and my hair is still falling out. My right temple still swells and when that happens my head aches my memory goes my mood dumps and my ears ring. My left index finger is unusable and my wrists kill, my ankles hurt. My wrists and ankles also unpredictably lose their strength. And this disease might be one of the best things that ever happened to me.

My low functioning autistic man-child Dar has always had periods wherein being asked to perform or do things is just too much for him. True, since employing the combination of neurofeedback and removal from school, Dar has improved dramatically: he is happy. He now talks and contributes and is a fun guy to have around. Still, sometimes he descends the stairs with a straight back sometimes he has to bob his way down. Now, I have long known that inflammation is an issue with autism but it wasn’t till I had to walk like my son that I came to understand just how much I am asking of him when I ask him to change things. Clearly if he could walk upright everyday he would.

The blessing I received from this experience was empathy and understanding. His.

Dar, it appears, is often dealing with arthritic swelling and brain fog. I think that’s why he seemed to understand my pain. He showed a side to himself I have never before known existed. He slept on the floor beside my bed in case I cried out. He helped me to the bathroom, helped me sit on the toilet, helped me put my cloths on, helped me get out of the bath. He was more concerned and user friendly than any other member of my family (And that’s a lot of competition because my family is awesome.). I have such a clear memory of us solving problems together like him turning the crank on the can opener while I squeezed the handles. Together we managed to cook, open containers and make it down the stairs. He was the most capable one in the house for the first time in his life and I understand him now in a way and at a level that I never could before.

So thank you Mr. Mosquito. You gifted me with a beautiful memory. My oversized lumbersome autistic man-son helping me get through my days like the gentle giant of love he has so beautifully grown into being. He helped. That was a desperate dream of mine when he was young: to see the day when if I were sad or ill or hurt he would care enough to help. Apparently dreams come true.

The problem as I see it with not ‘selling out is selling at all’ . For example I was all set to perform at a festival, I invested around two thousand hard earned dollars to rehearse the band because I am too busy traveling the world healing heads to just ‘be a singer with a band that does bars and festivals’ … So I hire musicians when the opportunity to share my music and my stories about helping and loving the people in my world known as ‘autistics’ comes along. Its a shocking, moving, funny, hope filled show penned and performed for the worthy cause of autism awareness. I also have a wonderful CD that I sell in the hopes that this journey of possibilities can move beyond the moment by being carried from one to another in the stereos of my audience. None of this is income creating. In fact quite the opposite … I work Internationally healing people and then reinvest the money in order to tell people that healing is possible. I tell it in an entertaining blunt and honest manner that is not always appreciated by my peer professionals.

I don’t mind spending money to make a difference in this confusing world of mental health. But sometimes insisting on being different while I do it is frustrating.

Because everyone has their own agenda and mine isn’t any more important than theirs… to them …

So my band sets up and the woman in charge suggests I do only ‘quiet’ singing and not shake things up ‘this year’ so that ‘perhaps next year’ we can perform in the big tent and ‘really let loose’. I looked at this sweet lady who wanted me to quietly reflect her Christian values from the stage and thought, “Doesn’t my life do that? Didn’t I adopted a gaggle of disabled children and then turn my life inside out to help them? Didn’t most of them heal and leave me with the brand new cause of sharing how we did it so that others could to. Am I not embracing all denominations and faiths in order to improve the world we live in … isn’t that a reflection love which is a reflection of her Christian beliefs? And if so why would we want to be quiet about that? How do I journey my listeners through the pain and land them in the miracle if I water it down to a whisper? Who will hear?”

Truth is I am a grandmother with a lot to share and very little desire to be a rock star but rock music is gritty and dramatic and has the chance of reaching younger ears so I wrote my songs with some rockin styles and if I whisper all you’ll hear is the horn blowing which is the same as hearing nothing. And besides I’m old enough to retire soon so waiting in the wings in order to ‘blow them away with my music next year’ isn’t really what I was hoping for. I was hoping to spread awareness via an audience that might be surprised to learn a few things while tapping their toes and shedding a tear or two.

Unfortunately there is no real precedence for a rockin grandma who travels the world fixing brains and uses her down time to entertain audiences while introducing her autistic jumping out of his chair man child to the world. This especially true if she is screaming her stories of challenge and hope to a rock music beat. So the people who try to help me succeed want me to leave my son at home, be quieter, be typical of a mature woman. be just one thing like a healer or a performer not both, be commercial, be normal.

The problem is “I’m not!” So that would be a lie. And changing the truth about what worked into something more palatable would change my message into snake oil. Snake oil sells but it doesn’t heal.

I am different just like my children. And we are wonderful just like you. So lets shout together … to the beat of our drums 🙂

A house full of love: I am lucky since becoming a mother I have always had a house full of love. Sometimes though it’s depressing because on occasion my house full of love lives without me. I travel to and from the various other houses full of love around the world while mine rocks on in my absence.

Understand I am not complaining I have a great life I am appreciated and adored. Everyone helps me to accomplish my goals and my goals are lofty: I want to reach out and make every house a house full of love. Maybe though I want to accomplish all that so I can feel justified when I choose to ignore others and stay home to drink the joy in mine.

I have often heard working fathers complain that they make all the money while their wives and children spend it and sometimes I want to yell DITTO! Not because others spend it but because they spend it in a way that allows them time together. And I want the time I see slipping away. Each time I get home travel worn and sleepy I smile as everyone laughs at my complaints and reminds me that I am self-employed. Today was one such day. A couple cups of coffee and several snuggles later I chose differently.

So if you want to book me for anything I’m pulling out the credit cards and hanging in fun locations with my own family. AKA unavailable all December.

Friday, October 3, 2008

Judging myself as better than you,

is an unhappy thought,

and makes me not,

better. Its true!

Today I was walking, as I often am, through the airport. I rolled my, two neurofeedback one personal computer case, behind me and slung my overweight satchel from shoulder to shoulder as I picked up the pace in order to not miss my flight. While I was zipping between people I mentally flipped through the last few days of fun and frolic. In other words I’d been working (My work is play. How cool is that?). I remembered the non-verbal young man I’d been working with who loaded my car up till it overflowed with all his toys and treasures: trying to give me his things cause it was easier than giving me his words. My heart was full of amazement at how hard he’d tried. He’d done all he could to make his throat obey him in order to do what I asked and then – giving up (for now) – added to the car pile by trying to fill my suitcase with all his clothes. – And they say autistic kids don’t care about people!?!? – I remembered the show I’d just done and how great it had been to see my son. He lives so far away from me that, having him be a not totally attentive (mom’s telling that story about me again… maybe I’ll go pee) member of the audience, was worth the trip to this sweet little theater. (Though I have to admit that I did find the big crunchy bag of plastic bag rumbling Doritos a little distracting. Still I was proud, when I remembered, that he wasn’t making sound affects and that not making sound affects was so much more than he could ever have done for me before. I located my gate and went back to my checklist of joy.

I thought about the laughs Rye (Doritos man/son) and I had had while making the video about how far Rye (very noisy Doritos man/son) had come out of autism. I thought about how proud 22 year old Rye (very noisy Doritos man/son whom I forgive) was to be living on his own, running his own business and successfully paying his bills. The airline announcement about keeping track of ones own bags interrupted my thoughts and I started listening for the call to board, excited to be heading home. I felt my eyes sparkle as the smile of “man I’m lucky to live in California and have such a blessed life full of children” settled warm on my face.

My eyes landed on an older woman with a down turned expression, sloping shoulders and a depression driven droop. I thought, actually, this one was more like a feeling than a thought. That’s how I keep secrets from myself. But I guess it doesn’t work because otherwise I wouldn’t be able to tell you about it. Any way, I ‘felt’ myself think: that my smile meant I’d found better, kinder more beautiful life than her. I leaned against the wall, satisfied and I waited, for my ‘zone’ to board.

Not more than ten seconds later a man interrupted my blank stare of exhaustion with some advice. “Come on hon. You look like a statue. Smile!” I’m sure I scared the heck out of him as I cracked up and fell over laughing. Nothing like seeing yourself through they eyes of another to make you realize how funny you are!

My son Dar and I spent the last two weeks in Montreal doing auditory integration therapy with a Dr. I trust and admire. It was a great one-on-one two week long therapeutic vacation enabling lots of bonding time between me and my 26 year old man-child. Then last Tuesday while walking back from therapy Dar was hit by a car (no worries he’s unscathed, though my hearts still thumping) crossing the street behind me in the middle of a snow blizzard. As soon as we got to the hotel Rye, a different son, called to say he’d been fired and wanted some supportive advice. Just as I finished dealing with him Dar had a reaction to something he ate and began exploding with the diarrhea his hands are too disabled to clean up. Our heat register broke so I used the stove to heat up this over priced under-serviced apartment/hotel room but that only lasted an hour as the stove fuse went out with a resounding ‘pop’ that sounded like ‘go to bed and forget about it’. We crawled under some covers and fell asleep only to be awakened just past midnight by the fire alarm. After two hours of standing in the snow with my autistic gentleman, while ambulances careened around corners and firemen came and went, the two of us returned to our room. We went back to bed and quickly to sleep. That night – while sleeping – my neurofeedback units (ten thousand dollars worth of uninsured equipment that I use to make a living) were stolen. The next day Dar and I headed off – as per usual – on our two-mile hike to the Doctors for therapy. It was still storming. We arrived covered in snow looking like snowmen and sweating from the exertion of climbing hills of powdered white.

‘How was your night?’ the Doctor asked. “ Pretty much the same as always – full of adventure.”

because of course it was

always

full of adventure. Besides I didn’t know about the theft yet – and even if I did – the French English barrier between us excluded any possibility of complete sharing.

However, while my son was doing his therapy, I thought about my accustomness to eventfulness and realized how lucky I was: One of the greatest advantages of raising eight kids – some of them disabled – is there’s always drama, so problem solving is second nature and you become very resilient.

On the other hand when you raise eight kids – some of them disabled – there’s always a need for problem solving and resilience

so maybe its not really luck just a well honed defensive maneuver masquerading as skill

probably so

but I still feel lucky.

Everything I own was either given to me or came from the thrift store – well except for the nectafirm which is supposed to elasticize my aging neck – what can I say we all have our Achilles heels. At any rate I was setting up props for my – can’t quite afford a roadie yet one woman show – and the tech supervisor said – looks like someone’s been to a garage sale – my response was ‘Na! they’re too expensive.’ Then I said, ‘I learned years ago that if you spend $1,000.00 dollars on furniture you’ll yell at your kids’ and felt quite pompous at how smart I was. Until I thought about it and realized it was true – and not true – true that I learned cheap furniture takes stress out of parenting – untrue that I would know – because – I never actually bought furniture for $1,000.00 – I don’t really have a comparison. (It’s possible that I yelled at my kids whenever I thought about buying furniture for $1,000.00 but I have no memory of this.) I was probably just justifying the fact that I don’t care about that stuff and don’t want to spend money on it. I realize it could have been different – I could have learned to be easy about spending 1000 on furniture and still not yell at the kids – but – then I’d have less money for travel and their favorite buffet – so – since I have to choose something to believe – now that I’ve examined it – I guess I’ll repurchase the ‘I learned years ago that if you spend $1,000.00 on furniture you’ll yell at your kids’ mantra that keeps me out of IKEA – and sprinkle its message about the house- for just a little longer.

I’ve been on the road working with other people’s children for a month and expecting to go home in a couple of days. Yesterday I was feeling impatient and worrying about the saying a shoemaker’s children have no shoes. ‘How does that relate to me?’ I wondered. Could it be that a Neurofeedbacker’s children have no neurons? Nah – How silly. I sluffed it off as highly unlikely. But still, though I love all the kids I work with, I do at times worry about not giving enough of myself to my own family. It is true that my kids are all over 21 but even as they have grown and gone, grandkids have come along to pick up the slack of needing attention, so the concern is still a valid one. At least that’s what I was telling myself when my nine year old, used to be autistic, grandson Shay took the phone from his mom. He told me a little of his school news and shared something about a couple of his friends. Then out of subject matter he said goodbye closing with a simple statement, “ I guess I’ll let you go I just thought you might like to hear my voice.” !?!?!

Apparently when I worry about them needing attention they think it looks like I’m the one in need

Ooops!