Showing posts with label Son and Me. Show all posts
Showing posts with label Son and Me. Show all posts

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.        

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.

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.        

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"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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