Sunday, February 12, 2012

Angels in the Moment




At fourteen I hiked Mount Humbug alone. At one point the path narrowed and I lost my footing. As I slid off the edge four arms lifted me to safety. It was a couple in their sixties. I wanted to ask them if they were angels but they were gone. 

If I had gotten to ask they would likely have said that, no, they were definitely not angels, but a mere retired couple hiking the Pacific Northwest. 

I wouldn't have believed them.

Fast forward sixteen years. It's a crisp morning around the turn of the century. I drive my beat up Ford Escort out of our apartment complex into our otherwise affluent neighborhood.

On the street I see a parked van with a man walking behind it and a woman running towards my car. My Jersey brain kicks in high gear. They want to run a scam on me. Better beat it outta here, fast. But her eyes stop my car cold. No, she isn't with this guy. That's primal fear in those eyes.  She's fleeing him.

I lunge onto the passenger side lock, push the door open and yell, "Get in!".

We round the van and I burn his license plate number into my eye sockets.

This would be abductee in the pink hat (I'll never forget that pink hat) hysterically tells me she is visiting her father from out of state. She went out for a morning run when this van pulled over and that guy tried to throw her in it. She grew up here. How could this happen here?

"Then I saw you", she says.

She leans sideways, viewing me in full and asks, "Are you an angel?".

"No", I chuckle, "I'm just a girl on her way to work".

I don't think she believes me.

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Sunday, February 5, 2012

I See Mary in a Garden




Sometimes people walk into our house and assume we are Catholic. Of course they would.  What non-Catholic living room contains so much Mary?


There is a large portrait of Mary praying in a garden
and small statue of a veiled Mary atop a bookcase.


Nearby a framed Madonna and child sits on a Moroccan style wine rack.


For over a year I found myself collecting all things Mary with no understanding why. After all, I'm not Catholic like those typically this passionate about their Mary collections. Then it hit me - I was under the spell of an archetype.

Any religious text, mythology, historical tale, or novel contains variations on themes that have played out across human history. Whether a story is literally true matters not because the message endures. Names, places, faces, and times may vary but the basic themes are timeless.

I like to recognize those broad motifs in my own life because this infuses my experiences, even the tragic, with meaning and mystery. It reminds me that I'm never the first or only person to go through anything, which is easy to forget in the thick of hardship. This has gotten me through some intimidating ventures, like the terrifying reality of childbirth. I thought of the tens of billions of women across the ages who proceeded me in giving birth, identified with their collective bravery, and became brave myself.

Then there's Mary. What is more tragic and joyous than watching your beloved son be tortured to death before your very eyes only to witness him ultimately risen to a glorious new life?

I came to identify metaphorically with Mary as a mother because my seven year old autistic son was slipping away from me. In constant pain from an undiagnosed 24/7 Petite Mal seizure disorder, his aggression was constant. He'd drag me across the floor by my hair one minute and hug me the next, until another seizure had him reaching again for hair to pull or arms to bite. Nobody had any answers and there was little reason to believe that would change.

During these bouts, my eyes would often focus on Mary and this gave me strength. I found these images centering because Mary and her beloved son, too, had been to the depths of despair. Not to imply that witnessing my child's deterioration, devastating as it was, is the same as Mary at the foot of that Cross, helplessly watching her son slowly die an excruciatingly painful death. But is there a more helpless feeling than watching your own child suffer, unable to stop it? Every mother decends into that personal hell sooner or later; it's just a matter of degree.


Since childhood I've had this way of imaginatively entering into objects, ideas, or images and experiencing them from the inside out. Though this happens non-verbally I emerge from these episodes somehow changed. And so it was with those Mary images. Over time they transmuted my desperation into an understanding that beyond a shadow of a doubt my son too would triumph over his suffering. This had no rational basis, especially since the doctors told us it was just the Autism and we'd have to learn to live with it. But I knew there was more to it and answers would come.


And those answers did come.

We learned that our son suffered from an undiagnosed seizure condition, possibly since infancy. Now that optimal medication levels have been achieved his development, which stalled for years, has taken off. He amazes us each day.


I've long suspected that my son sometimes reads my mind. Now I'm convinced. I wrote this post in my head as it coalesced around the line "I see Mary in a Garden" from Springsteen's song The Rising, but mentioned this to nobody. Imagine my surprise, then, when my boy walked up to me, leaned his elbows on my knees and asked with a big smile, "See Mary in a Garden?" With tear-filled gleaming eyes, I returned his grin and said, "Yes I do."


My son, too, is resurrected.

------------------------------------------

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Update: 3/30/18

My son's early and middle childhood were continual bouts of his doing well and then regressing. He has always been verbal, but until the last few years speech was limited to short sentences. He was subsequently diagnosed with migraines, which was what caused much of his pain in the early years.  Migraine conditions in the functionally nonverbal are commonly missed since these individuals cannot explain what is causing them pain. Sadly, pain outbursts and self-injury from their migraines is often labeled "just behavioral" or "just the autism".

Now that his migraines and epilepsy are controlled with Cannabidiol Oil my son is happy 90% of the time. I no longer believe Autism itself has anything to do with his physical pain.

I share this for the same reason I have always shared the end results of his medical mysteries: what if information in our story holds a key for someone else? After her autistic son's aggression was labeled just behavioral, a local mom heard our story and insisted upon an EEG. Her son had undiagnosed epilepsy and behavioral problems reduced dramatically with treatment. 

We were only able to diagnose his migraines because my child was somewhat verbal and could offer clues. "Alex's head is humpty dumpty.", "My head exploded.", and "There is cake frosting in my head." The neurologist took it from there.        

Monday, January 30, 2012

White Stone, Burning Bowl




Unity is a bit unconventional and not especially ritualistic. We don't do communion and rarely conduct baptisms. And while the rest of Christendom prepares the Eucharist, we can be found meditating amid our Sunday services.

But there are two rituals we do each year that I eagerly anticipate: The Burning Bowl and White Stone Ceremonies. 

Burning Bowl

Burning Bowl is the first Sunday after New Year's Day. During a guided meditation we write on flash paper things from the previous year that we'd like to release. It could be anything from old hurts and regrets to finished relationships or job transitions. Letting go creates a vacuum that is filled with whatever we  invoke for the New Year during White Stone.   

I'm told the first year our church had this burning garbage can that got so out of control it had to be hosed down out back. These days we just incinerate our sorrows in a single, flickering flame. Poof! Gone. Just like that.


My son also seared away the hardships of 2011. Our minister, who could seriously do stand up in her spare time, wondered what in the world these little ones could possibly be letting go? Then she told us a priest once said listening to children confess is like being stoned to death with popcorn.

White Stone

Within a few weeks of Burning Bowl is The White Stone Ceremony. That morning we are each given a white stone quarried from Israel.


This ritual is inspired by Revelations 2:17, "To him who overcomes, I will give some of the hidden manna. I will also give him a white stone with a new name written on it, known only to him who receives it."

When prisoners back in the day were released they were issued a white stone with a new name on it, symbolizing a fresh start. Our White Stone Ceremony reaches across time, anchoring this ancient metaphor in modern hearts when our new names, so to speak, are revealed in meditation. It could be a quality one wants to cultivate in the new year such as compassion, Christ-like, focus, forgiving. Or, maybe it reflects a dream held dear - motherhood, author, graduate. It could even be the same word from last year, no one would know anyhow since it is between ourselves and The Source. This rectangular white rock quarried from The Holy Land, then, becomes  a talisman, a physical reminder of what matters most to us.

This year I wrote five, count em', FIVE words on my white stone, because I could, but I'm not going to say what they are, because I'm just superstitious enough to think that I shouldn't.

Further Information:

White Stone and Burning Bowl by Rev. Carla Golden

Unity

Unity on Wikipedia



Tags: White Stone and Burning Bowl

Sunday, January 22, 2012

Introducing Louisville's First Med Mob




Yesterday I did something waaaaay outside my comfort zone. Now get your minds out of the gutter, I'm talking about my participation in Louisville's first Med Mob

On January 21st, 2012 at 11:00 a.m. eastern standard time people in 250 cities around the globe joined in public flash mob meditations.

Our Med Mob gathered around a fountain at The Mall of St. Matthews. I'd say it was more gathering than mob. Okay, so maybe it was just myself and five other people! Well, seven of us actually, because you can't meditate in public anywhere in Louisville without practically getting stampeded by the likeness of a horse.

I was so nervous. Would we be mistaken for protesters and get arrested? Would teenagers use our eyes for dart practice? And why was I doing this anyhow? 

But when we closed our eyes Tom Petty's song Learning to Fly came on the overhead stereo and I felt the whole group relax. We meditated peacefully for twenty minutes and then we heard it - the fuzzy garble of security guard walkie-talkies. I sat there, eyes closed, telling myself - don't go into fear, don't go into fear, which is just like telling yourself - don't think of an elephant, don't think of an elephant

Apparently some Vegas style cooler kabashed our vibe. This woman came over, snapped pictures of us, and started passing out fliers we had available for people to take (though we had no intention of passing them out unsolicited like that). When this attracted mall security the woman took off. We knew none of  this, what with our eyes closed and all, but the security guards thought she was with us. They were super nice but concerned that if she posted those pictures on the Internet with store-front logos in the background that would violate copyright. They kindly said we could continue but our momentum was gone.

This drove home to me how few truly public square type places remain in America today, and, that when you really think about it, so much of what we do these days, however innocent, risks some copyright.

So we are on the lookout for an indoor public space for the next several Med Mobs. Once the weather warms up though look out Louisville Metro parks system. We're here! We're quiet! Get used to it! :)  Stay tuned.

For more information:

Med Mob: Inquire Within (international site)

Med Mob Louisville on Facebook

Med Mob Louisville Blog

Sunday, January 15, 2012

Sister Serpent on a Sunday Afternoon


My son is obsessed with me. Take this the wrong way if you must, but sometimes he reminds me of a puppy. When I take a shower he waits outside the door. If I leave the house he watches from the window. And when I return he jumps up and down ecstatically and follows me from room to room. I wonder if he even has that sixth sense and knows when my car turns the corner of our street?

Now, I know what some of you are thinking - big deal, my kid did that. Right, when he was two. Mine is eight. Isn't he supposed to be ashamed of my very existence by now?

And God forbid he catches me baking without him. You see, baking is his thing. If I try to sneak in a batch without little hands taking over he barrels into the room like a boy betrayed, as if he caught me cheating. Yes folks, in our house attempts to bake without him are generally referred to as cheating on him. If you're going to cheat, we say, make sure it is after he goes to bed....and be certain he's asleep because if he smells those muffins in the oven its over.

Sure, I affect exasperation but deep down I love this. While some of you lament that your five year old now has her own life I get to keep my baby longer. A lot longer.

It's fun. Until it isn't.


By golly, that boy even wants mommy when his nervous system gets overloaded beyond what most of us could even bear. Taking my hand he says, "mommy's going down the stairs" (the apraxia dictionary defines downstairs as upstairs). Then he kicks his arms and legs into the bed and makes weeeeing sounds. I don't have to say much, just watch him kick and "weeeeeee" overwhelm from his hyper-sensitive nerve endings - and smile at him. There has to be the smile. He wants a witness; that is all. Perhaps reassuring smiles from momma mirror unconditional acceptance, and convey that all is ultimately well, despite the neurological chaos that rages inside him.


I like being his witness. I like that he wants me to be his witness. However, if I'm required to lie on a bed long enough during the day I will fall asleep. And the only thing I want to witness at that point is my dreams.


At first he does usual kid things to rouse my attention: sits on me, pokes my eye, laughs directly into my ear. Nothing. If I pretend to be asleep, like I really just was a second ago, maybe he'll give up. Perhaps he'll even fall asleep eventually. Now that would be nice!


And then I hear it, "hmmmnnnlll, hmmmnnll, hmmmmnll". Oh my God he's whimpering. Like a dog! That's why we don't have a dog. I can't stand the whinning!


OK, if I ignore this, surely he'll quit. It's a lot of work to whine like that.


"hmmmmnnlll, hmmmnnnllll, hmmmnnnll".


I guess he thinks I didn't hear him the fifth time.

Then mommy guilt, that serpent, slithers her way around my heart, wrapping it in knots. "Well, well, well", Sister Serpent says, "How short is thy memory. You don't know your blessings when they stare you in the face. Why not so long ago you lamented how autism stole your baby. You cried that he wouldn't let you into his world and now all he wants is to be in yours. Tsk, tsk. And so what if this is all consuming. What did you think you were signing up for when you became a mother, auntie duty? Your friend Kathryn has four children and she doesn't complain. And why your own mother raised six, then took in foster children....."


I won't win this. I concede and mommy guilt relaxes her grip on my heart. Turning to my son, with eyes still closed and heart wide-open, I say, "what is it my baby?".


Who ever said guilt serves no purpose?




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This was originally posted on my former blog two years ago. It is the only post I've ever written that wrote itself. At almost ten, he mostly weeeeeees! by himself now but occasionally still wants his witness, thank goodness.

Tuesday, January 10, 2012

My Homemade Compost Bins - Part Two

Photobucket

In October I wrote about the advantages and disadvantages of my composting system.

Photobucket

Though wonderful, alone it just didn't produce enough compost for my gardening needs.

I solved that problem by re-purposing a large stainless steel garbage can that was just being used to store junk anyway.

I drilled holes vertically around the four sides for circulation and drainage.

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Then I did the same on the bottom

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and on the lid.

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The decomposition of food into compost requires hot temperatures. And no container does decomposition better than stainless steel baking in the hot sun, which is good since I need my compost fast.

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So now I have the three cans going and that should be enough.

Cost of this one = $20.00 and 45 minutes to drill holes. 

                              ########

There are other ideas for homemade compost bins floating around cyberspace.



bctphotos @ Photobucket has a self-contained, raised open bin.




MagzDragon @ Photobucket uses a plastic garbage can. Seems like using a plastic garbage can with wheels might come in handy because you wouldn't require a wheel barrel to move the dirt.

What compost system do you use?

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Related Post: My Homemade Compost Bins: Part 1

This post is listed on:




and on





Tags: building a compost bin, making a compost bin

Saturday, January 7, 2012

In the Valley of Elah


Prednisone. A steroid. A tiny black widow of a pill that heals first and harms later.

A drug so dangerous long term that son's Neurologist refuses to write a consecutive prescription. The good doctor knows that were my boy to remain on Prednisone indefinitely he would develop Adrenal disease, Osteoporosis, and Diabetes. It is a matter of when, not if.

This tiny white pill is the last of it, taken today. At high doses son loses all stereopathy: arm flapping, sound making, repetitive behaviors - gone. Speech explodes and he thrives in mainstream classroom settings. Most importantly, he is freed from the excruciating brain and gut pain that plagues his young life.

His neurologist will re-prescribe, but only after son's body has had a break. Trouble is a certain percentage of children with epilepsy do not respond again to steroids after going off them. The fires of inflammation return with a vengeance, triggering seizures that rob these children of speech and continence and the overall ability to function in public - this time with no recourse. And yet, some children do just fine with subsequent doses. You know which category I hope son falls into, but there is no way of knowing beforehand. I may be used to risk by now but it doesn't exactly fit like a comfy old shoe. It never will.

This week son bumps down to his lowest dose yet: 2.5 mg three days this week, then it is over. The regressions have started, it seems, or is this just a bad day? I don't know anymore. He tantrums for an hour straight.

"Come rock with mommy", I say, leading him to the same rocker I nursed him to sleep in as a healthy infant.



"Cat's Cradle. Cat's Cradle", he says, wanting me to sing that song to him. He is trying to self-sooth. Son might be the only person in the world who finds the lyrics of that song humorous.

"..........The cat's in the cradle and the silver spoon, little boy blue and the man on the moon. When you coming home son, I don't know when...". I choke on tears, unable to finish. Damn it! You're not supposed to do that in front of the child! Can't you even give him the one thing he needs right now?



He angrily rocks us so hard that we almost tip over backward. I steady us, holding his gaze, "It's okay honey, it's okay." He softens.



"Get a tissue", says my barely verbal Autistic child as he wipes the tears from my cheek with his sleeve.



"When you coming home son I don't know when, but we'll be together then. You know we'll have a good time then...........", I finish. He smiles.



Mommy vs. Goliath


I am a human echo chamber, bombarded by son's past suffering. Those memories ricochet off my synapses, locking me into fight-or-fight. It is all I can do.

So we're headed into battle. Again.



In preparation I grab my gear - hour upon hour on Pub Med trying to identify gaps doctors miss. Test results have ruled out certain things, including autoimmunity. My research (and gut) tell me a Mast Cell problem might underlie son's haywire inflammatory processes. We are giving him Neuroprotek in attempt to level the enemy. It is basically a high quality flavanoid supplement, that's all. So even if this isn't ultimately a Mast Cell problem, flavanoids are super healthy anyhow. We could all use more flavanoids, you know.


And so I march into battle, armed only with my little Neuroprotek rock and a really good homeopath. I will sling these at that twin Goliath brain and GI inflammation. Will I emerge from battle, like David, with an unlikely victory? Will I wander into the sunset, healthy son on my shoulder? Or, like the older David after crucial mistakes, will I scream to the heavens, "How much longer! How much longer!"?

This is my testimony. I hope some day son is able to give you his.


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--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------


 My son did regress, but not until two months after stopping Prednisone (kids typically last about ten days), so the Neuroprotek may have helped. After two months he returned to Prednisone and remained on a pulse dose for two years. Fortunately he did respond after having gone off that medication when he went back on it.

The epilepsy diagnosis just scratched the surface of his issues.

Update: 3/30/18

My son's early and middle childhood were continual bouts of his doing well and then regressing. He has always been verbal, but until the last few years speech was limited to short sentences. He was subsequently diagnosed with migraines, which was what caused much of his pain in the early years.  Migraine conditions in the functionally nonverbal are commonly missed since these individuals cannot explain what is causing them pain. Sadly, pain outbursts and self-injury from their migraines is often labeled "just behavioral" or "just the autism".

Now that his migraines and epilepsy are controlled with Cannabidiol Oil my son is happy 90% of the time. I no longer believe Autism itself has anything to do with his physical pain.

I share this for the same reason I have always shared the end results of his medical mysteries: what if information in our story holds a key for someone else? After her autistic son's aggression was labeled just behavioral, a local mom heard our story and insisted upon an EEG. Her son had undiagnosed epilepsy and behavioral problems reduced dramatically with treatment. 

We were only able to diagnose his migraines because my child was somewhat verbal and could offer clues. "Alex's head is humpty dumpty.", "My head exploded.", and "There is cake frosting in my head." The neurologist took it from there.        

________________________________________________________________________
"Having children is like consenting to a wound that will never heal because you never stop worrying about them."
Unknown
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Resources:

"The role of quercetin, flavonols and flavones in modulating inflammatory cell function".Chirumbolo S.
Department of Pathology and Diagnostics, University of Verona, Strada Le Grazie 8 37135 Verona, Italy.

"Anti-inflammatory effects of dietary phenolic compounds in an in vitro model of inflamed human intestinal epithelium."
Sergent T, Piront N, Meurice J, Toussaint O, Schneider YJ.
Institut des Sciences de la Vie, Louvain-la-Neuve, Belgium.

Am J Clin Nutr. 2010 Dec;92(6):1511-21. Epub 2010 Oct 13.

"Quercetin is equally or more effective than resveratrol in attenuating tumor necrosis factor-{alpha}-mediated inflammation and insulin resistance in primary human adipocytes."
Chuang CC, Martinez K, Xie G, Kennedy A, Bumrungpert A, Overman A, Jia W, McIntosh MK.
Department of Nutrition, University of North Carolina-Greensboro, Greensboro, NC, USA.

Int J Immunopathol Pharmacol. 2009 Oct-Dec;22(4):859-65.
Autism spectrum disorders and mastocytosis.
Theoharides TC.

J Clin Psychopharmacol. 2008 Oct;28(5):479-83.
Autism, gut-blood-brain barrier, and mast cells.
Theoharides TC, Doyle R.


J Autism Dev Disord. 2011 Jan 6. [Epub ahead of print]
Brief Report: "Allergic Symptoms" in Children with Autism Spectrum Disorders. More than Meets the Eye?
Angelidou A, Alysandratos KD, Asadi S, Zhang B, Francis K, Vasiadi M, Kalogeromitros D, Theoharides TC.
Molecular Immunopharmacology and Drug Discovery Laboratory, Department of Molecular Physiology and Pharmacology, Tufts University School of Medicine, Suite M&V-208, 136 Harrison Avenue, Boston, MA, 02111, USA.

Expert Opin Pharmacother. 2009 Sep;10(13):2127-43.
"Autism: an emerging 'neuroimmune disorder' in search of therapy."
Theoharides TC, Kempuraj D, Redwood L.
Molecular Immunopharmacology and Drug Discovery Laboratory, Tufts University School of Medicine, Tufts Medical Center, Department of Pharmacology, Boston, MA 02111, USA. theoharis.theoharides@tufts.edu


References regarding specific ingredients in Neuroprotek:

Middleton E Jr, Kandaswami C, Theoharides TC. The effects of plant flavonoids on mammalian cells: implications for inflammation, heart disease, and cancer. Pharmacol Rev. 2000 Dec;52(4):673-751.

Kempuraj D, Madhappan B, Christodoulou S, Boucher W, Cao J, Papadopoulou N, Cetrulo CL, Theoharides TC. Flavonols inhibit proinflammatory mediator release, intracellular calcium ion levels and protein kinase C theta phosphorylation in human mast cells. Br J Pharmacol. 2005 Aug;145(7):934-44.Kandere-Grzybowska K, Kempuraj D, Cao J, Cetrulo CL, The
oharides TC. Regulation of IL-1-induced selective IL-6 release from human mast cells and inhibition by quercetin. Br J Pharmacol. 2006May;148(2):208-15.

Kempuraj D, Tagen M, Iliopoulou BP, Clemons A, Vasiadi M, Boucher W, House M, Wolfberg A, Theoharides TC. Luteolin inhibits myelin basic protein-induced human mast cell activation and mast cell- dependent stimulation of Jurkat T cells. Br J Pharmacol. 2008 Dec;155(7):1076-84

Sunday, January 1, 2012

Motherhood


Hubs is plotting the garden and I go outside to see how things are coming along. I am there for three minutes, maybe five. I return to find my nine year old Autistic son retching into a pool of vomit, surrounded by powdery white automatic dish detergent (He had a tummy ache and thought it was baking soda). I give silent thanks to the environmentalist in me who uses Seventh Generation and not Cascade with sheeting action.




Later I'm enjoying a bowl of blueberries alone in the living room when I hear, "want to hug momma", followed by the patter of feet. Son climbs into my lap and says, "a heart ". He takes my index finger and traces a heart on my forehead, then kisses it.



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