Category Archives: Blog

The Abuse of Sensory Processing Disorder Inherent in Autism

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.

Case in point three: A young girl smelled, everything! Her sense of smell was so acute that she needed to keep a distance of five feet from people to not be made nauseous by the smell of their breath. She pulled away to find a comfortable bit of air to inhale. She spent most of her time totally focused on the task of creating enough distance. The minute she found this fleeting moment of freshness and easy access to oxygen she relaxed and looked around at all the people staying away from her. And she was lonely. So she would try and connect but then their breath would hit her and she would be so busy drowning in the density of that air that she would lose sight of her purpose and simple need to pull away. Once away she breathed, relaxed and then felt lonely again, so she focused on her feet and her hands and perseverated on making them smell beautiful.

If you ask any of these wonderful super challenged sensory confused children about their childhood it will be a story of pain and abuse. That childhood abuse came from their own condition. And these are just some small examples of what similar children cope with.

The important thing is to understand this so that you can incorporate what you know into how you speak and care for your already struggling child. These problems can be addressed and helped, but not if the child is in flight or fight defense mode while you help them. You can increase the abuse by deciding to focus on academics and teach the child to pretend to fit in while suppressing their discomfort or you can focus on helping them understand what is happening so that they can step towards the issues with care and expose themselves to the problems gently. This, along with some good therapeutic assistance, is how you make use of brain plasticity and ask for a healing.

It is not about becoming un-autistic or declassified or recovered because you can handle school and pass some tests. It’s about feeling comfortable in your own skin, with your family and within the world, so that you can have a good childhood.

This is the awareness I would like to bring to Autism Awareness month: That sensory issues blended with cognitive processing problems create an inner climate of abuse. Please don’t add to it.

 

 

Choose Your Valentine With Care: He/She is Bound to Change your Brain!

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.

From Frazzled To Fantastic

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.

DON’T WANNA KNOW, DON’T WANNA DO IT!

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.

Tie em up therapy

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!

Reality Retarded

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.

Fantastic Fwesant!

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!

UPDATE ON THE BUFF AND PUFF!

Important to know: My grand kids call me Dramma!

Now the update: I did my post peel appointment with Dr. Buff and Puff. He took my pictures, placed them next to the pre peel pictures and we looked at the before and after so that I might know how I should feel about the whole thing. There it was, absolute, undeniable evidence. I now looked at least five years older than before the poverty inducing peel of plenty. oops!

Be careful what you wish for… you just might get its opposite!

There is no happy ending here so I thought I’d seek a lesson… thinking… thinking… thinking … still… thinking…. aha! I’ll cover all the mirrors in the house and start wearing makeup… oops I’ll have to look in the mirror for that… thinking… thinking… thinking … aha!

I’ll just stop chasing a more youthful appearance and settle for getting even the kids I work with to call me Dramma (tic)?…hmmm… thinking… thinking… thinking …

Or I could try the ultra awesome age correcting ultrasound peel he promised to give me half off on????

Buff and Puff

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.

Are You Man Enough?

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!

“Getting into” it all

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 🙂

Circle of Life

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.

THE MAGIC OF MAYHEM

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.

Chikungunya

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.

Sellout!

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 🙂

Missing you…

Walmart in Paris

My daughter sent me this email message detailing a conversation with my grandson:

Tyran asked me this morning where you were and after I answered he replied ‘that’s how you know its our family. In other houses when you ask where the grandma is they don’t say things like Paris…its usually more like walmart.’

So I am not only blessed enough to work in exotic places I am also blessed enough to be missed.

Family Time

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

Perspective

I was walking in Paris having had a most amazing outreach with a most amazing young man when it struck me that I had just come through my own personal funk. After having finished a wonderful run of shows meant to benefit the cause of sharing my learnings about the grand possibilities available to the autistic mind I had wanted to stop working. I was feeling a little like Jesus and the lepers… overwhelmed by the numbers of people needing help.

Work began to slow as if in response to my desire and I considered retirement with sigh upon sigh. I began to imagine myself as an old woman painting pictures of landscapes. I dragged myself onto the plane and flew the seven hours to Paris. Then I saw him. The beautiful teenager I was here to help. He mirrored me even before he saw me, with shoulders hunched and head in a slump. What a gift his presence was. For in that moment I remembered what I had come to teach.

LIFE COMES TO ME WHEN I COME TO LIFE!!!!!!!!!!!

Smile!

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!

Do you feel lucky?

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.

Second Hand Rose

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.

Shoemaker’s Kids

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!

Window’s of the soul ya know…

Dar got a black eye and I have no idea how. He says it happened ‘in the pool’ or maybe ‘in my poo’ hard to say his pronunciation is still pretty garbled. At any rate his eye was black and he thought it was cool. I know he thought it was cool because when we were at McDonalds – yes we go to McDonalds – Dar ran into some neighborhood friends who ooohed and ahhed over his eye while he grinned, pulled his shoulders back and shook their hands (a high sign of approval from Mr. Still Pretty Autistic). His pride was cute, his black eye problematic. The complicating factor was that I was about to break my own – never perform near where you live rule – and would be doing my ‘please listen to me I’ve discovered amazing things about autism and cured many children show’ in my local community. Dar’s black eye could raise eyebrows cause whispers and blacken my credibility by association. Every single one of my children has put me in this position at least a hundred times during their lives. The autistic ones just put me there even more often. Its a funny life raising children out of autism …… as they become better they become more social but there are holes in their learning from the years of autism so they are still challenged and doing unusual things. You learn to laugh… As … On their way to typical each one of them passes through the label ‘brat’ ‘spoiled’ ‘out of control’ and ‘rude’ during this period they explore and become exposed to more and more danger with more and more creative ideas about how to create bigger and bigger reactions from people who are willing to be shocked by their behavior … until eventually they learn to value self control…. And fitting into the group. During this period it’s a good idea to work away from home keep your colleagues at a distance and try not to overlap your parenting reputation with your professional one. I was about to break that rule because I wanted to share with my neighbors what people all over the world hire me to share with them. And then – just in time to remind me not to take myself so seriously – Dar got a shiner… which he flashed around for all to see. I was mulling the situation over and deciding whether or not to feel concerned for my career when Dar picked up a girl’s drink gave her his eye brow flex of flirting and took a sip. ‘Jerk!’ she muttered. And the decision was made. My answer was no. No need to be concerned because the important part was working. I giggled hysterically and had to abandon the counter clerk to run and pee (it’s a weak bladder laughing woman thing) because I realized the girl had thought barely verbal Dar was ‘just another inappropriate non autistic black eyed pain in the ass.’ Ah life’s little pleasures.

Keep on growin’

My granddaughter who used to be overly sensitive and cry or reject easily loves dogs. She is seven years old. She was bit in the face by a dog she both loved and trusted. She was stitched and bandaged. Her shock lasted two days. On the third day we (her mom, her sister, her mom’s friend, Dar and me) were walking to the library all wearing matching bandages (to help her feel normal about her abnormality) when we saw a variety pack of five differently sized dogs. She petted them all. Wow. Testament to her – testament to her mom – testament to neurofeedback.

What’s the opposite of writer’s block??

So I finally stopped talking long enough to write…. Actually that’s a lie. Truth is I couldn’t stop writing long enough to write … I’m kind of a writing addict… so since at present I’m trying to wean myself away from constantly writing and rewriting my one woman show before it grows too long to be a mini series (one reviewer even suggested I shorten it – imagine the nerve – instead I made it funnier… so much so that it grew an extra ten minutes… but I figger if the audience is already sitting three hours what’s an extra ten minutes… especially if its funnier… fortunately the audiences seem to agree… but even I know that if the show doesn’t stop stretching – I may have to adopt the whole lot of them) that’s why I’ve decided to blog a little… I’ve already adopted… children that turned out to be my audience (don’t think about it I just like to talk like that). I expect – for me – blogging will be sort of like a writers patch or writers gum or a pacifier for my writing hand to twiddle – so if you don’t feel like reading it no problem I don’t plan on saying anything… just easing into the process… its all about the writing to write part of breaking the writers habit… I should be doing it for an entry or two… till the next project grabs me by the typing finger so it can spin out of my head and into the computer… Writing is fun. Writing about my life is even more fun. I think that’s why most people blog. But since I mostly write about my life anyway blogging has no edge over projects … especially since projects pay… occasionally… and can end… as long as you’re willing to stop… and end them. Thing is writing autobiographically makes endings a challenge… but writing autobiographically makes so much sense for me because people are motivated by my life … and since I’m still trying to figure out why that is, I like to share… so I can hear myself and maybe come to a deeper understanding. Problem is publishers all know what part of my life they want to hear… and its seldom the same part I want to tell… because they want me to write the story of getting and raising all those special kids – while my kids want me not to – my kids have more pull – with me. So I kind of half satisfy us all and write about me… while I was raising them… since writing about me is writing about them some of the stories seep in. Speaking of stories I just thought of a good… one for my… maybe I’ll just work on my show some more… hmmm… I wonder if there’s such thing as ‘one woman show writers anonymous’?

Gossip… Pass it on!

Today two of my daughters and I were sitting on the kitchen counter (because conversation is so much better there and besides its closer to the senseo which requires proximity because you have to make the coffee one cup at a time)and chatting about various places we’d worked and what a relief it is to no longer have to take care of other people’s egos. We went on and on about how comforting it is be working together. It was quite a lively little gabfest. You see, in my home – unlike many others I’ve been to – there is no sensitivity to jokes and comments (that doesn’t mean all my kids are thusly blessed just the ones who are willing to still live with or near me) nor duplicity, no angst, no arguing, no gossip or two facedness. We get along. It’s all very SMOOTH! And we enjoy talking about how great that is. We went over and over again our blessings and family pride, we bragged and complimented ourselves. We were happy to be comfortably confident. So much so that it wasn’t till we all dispersed and I sat down to blog that I realized we’d used comparing ourselves to the failings of others to appreciate the successes in us. Apparently we’d been gossiping about how other people gossip and priding ourselves on not. Oh well at least we weren’t judging them.