An Unfinished Parent

In the days before email

2017-04-27T12:45:00.002-06:00

This post is a reprise of an earlier one from 10/28/2007. Two weeks ago while traveling with my son to see colleges, I met my beautiful pen pal of 42 years, George. As is the case in a world of traumatic news and upsetting politics, this feel good reunion found itself sticky on Facebook and has since stirred interest from a tremendous number of news sources seeking stories that fill the heart with joy rather than fear. Today the video of our meeting is trending and all I can do is revel in how extraordinary the ordinary feels. Here's today's news story: http://abcnews.go.com/Lifestyle/people-whove-pen-pals-42-years-meet-1st/story?id=47054985

10/28/2007

In the days before email...

In the days before email, there existed a means by which people communicated called letter writing. I’ve only known a few genuine letter writers in my life, my grandfather by marriage, Elmer Gertz, being one of the more famous. His marvelous handwritten and barely legible scribes to and from Henry Miller from the time while he represented Miller on obsenity charges relating to his book Tropic of Cancer through nearly a two decade friendship that ensued afterwards and have since been published. So vicarious it is to read the written conversation between the two of them, imagining I hear the pens scratching the pads and, of course, thinking of all the miles the letter carriers had to go to get the letters to their rightful places.

Since I only had the joy of knowing and loving Elmer in the latter part of his life, I often wrote to him and his wife Mamie, and treasure some of the beautiful keepsake letters they responded with.

I’m old enough to have had a manual typewriter in college. I take pride in having originated in the little factory town where onion skin typing paper was invented and would still be made if it weren’t for the revolution of technology. That makes me old enough to have been a letter writer. Maybe it was just something in my make-up, something I was just born to do. But, I have always loved to write…and while this handy dandy little laptop thing makes the gratification so much faster and easier than it has ever been, there is something very special lost in the disappearing act of the pen and the pad.

When I was in 7th grade, one of my very best friends, Michelle moved away. Far away. She moved to Louisville, Kentucky and to me, in my little Massachusetts factory town in the middle of the Connecticut River, an island unto itself, it felt like worlds away. Just thinking about the moments surrounding the last time I saw her brings back a deep and solid hurt that even three decades later I can still feel. At first I wrote her daily. I wrote her the minutia that only a 12 year old could. I biked to the post office, which involved logistics including a HUGE downhill sprint and an even more HUGE uphill battle afterwards. I kept this routine for some time, buying several stamps weekly. At the end of every school day, I found myself running home, latch-key kid that I was, to find an empty house but a mailbox full and with much hope I awaited hearing from her.

Thinking about it now, through this letter writing practice I found my writing voice. I began to embrace this voice and was excited to use it whenever I could. I began writing more letters to my grandparents in Florida, and my grandmother’s sister- my Aunt Jean, who, for some reason, spoke with no one else in the family. While my letters to Michelle went mostly unanswered – indeed, much more exciting to have been the person to have moved than to be the person who was left behind – my mailbox was often full of notes and thoughts from other thoughtful people who enjoyed my letters and my “voice”. One such letter came during the spring of 1975 from the one other person who had responded to a chain letter that Michelle had once sent. Remember those, you send 5 letters and you receive hundreds? I got one…it was from a boy named George and he lived in New York. Upon receiving his one “chain letter” from me in 1975, he wrote me one asking if I wanted to be pen pals. It has been a destiny as only one could have written in letters. Little would I ever expect that 32 years later this boy named George and I would still be writing, sharing our joys and our sorrows and the minutia of our days with each other.

Over the course of the last 30+ years, I have come to know George in a way that is hard to verbalize. He’s my pen pal and we have a love and a respect and a loyalty and dedication to one another like nothing else I know. We grew up together and we shared so much without ever having been in the same room. His is the longest friendship I have nurtured and he is without flaw in his dedication towards it. He remembers every birthday, every anniversary, every holiday. Now, he remembers my children, their names (which I sometimes even trip over), and THEIR birthdays. I often picture him a genie with this amazing magical glass ball that he can look in to see what is happening in my life.

Last year at this time I received a heart-wrenching letter from him that he scrawled on the back of a drink napkin while on board the plane that would take him to his mother who had just passed away. He was alone in his grief and yet had the presence of mind to write me what was the most intimate and loving note I have ever read.

This week I received pictures and a review of his role as Lumiere in The Beauty and The Beast in its 1st performance after leaving Broadway. The reviewer said his role leading the song “Be our Guest” was like the Maurice Chevalier of candelabras (steve.parks@newsday.com). My son, now 8, and I reveled in the pictures wondering if he really had to keep his arms holding the flames up through the entire show?! My son knows my pen pal George that I have known since I was a kid. Again, my past meets my future and it takes my breath away.

This is a legacy I hope my children will know. I hope that writing will become less like homework and more like their opportunity to create a voice in the world, a voice that brings joy to people when they see the handwriting on the envelopes in their mailboxes.

Grandpa Elmer once shared with me that he felt I was a very special person because I enjoyed the art of letter writing so much. He felt I was a legacy to a fast disappearing art which he had enjoyed so much in his lifetime. I adored him and was so flattered by this common love of letter writing that we shared. Much like him, my heart skipped a beat every time I recognized the scrawl of handwriting from someone I hadn’t spoken to in ages or someone who lived far away. To this day, George’s handwriting is the same as it was 30 years ago and I’m 13 all over again as my heart jumps a beat every time I see it on the outside of an envelope in my mailbox.

Moment of Instinct

2015-10-11T12:30:00.003-06:00

INSTINCT

And there it was, on my walking meditation with the dogs this morning. In a moment of instinct, one of three beautiful monarchs that flew past me in a glorious and majestic formation was lying on the hot concrete. Just seconds before I watched quietly as if looking at a living painting, a plateau of beauty as expressed by this exquisite form of life, while it flitted from blossom to blossom in front of me. But now, as I looked down through stinging eyes of a woman who has cried too much in too little a measure of time, I only saw that its left wing was tattered and torn and it struggled to feel itself within its broken form. Lost in the seconds I watched it in its bliss longing for the freedom to again return to my expression of joy rather than a brokenness that came of a life lesson this week. In the time it took to breathe a cycle, my six-month old retriever closed in without so much as a hesitation and snatched it in his mouth.

At the second of illumination, I pulled at his lead.

“Drop it. Drop It. No NO NOOOOOO.” I heard the words, their meaning unknown to my puppy who is bred to retrieve, as this glorious gem fell gently from his mouth onto the sidewalk. “Mustn’t….” I continued…as I looked down to see a miracle of transformation lying before me, unable to fly, and on the edge of death.

Barely barricaded tears assigned to other concerns dripped down my cheeks and fell to the concrete like a desperately needed rain as I realized it was a moment of instinct and I had no business admonishing him for it. It was what he was born to do and it was what came naturally.

I bent over the now nearly still beauty, lifted it to the blossom it had last smelled and placed it gingerly on the branch for it to take its last breath. Moment of instinct. It is innate to his nature, my puppy, to take chase to anything that flies past him. A day earlier I had seen him chase a dragonfly gleefully across what was at least half a football field only to return prostrate with his tongue hanging on a 90 degree day. It’s just what he does. A natural response. And what of human response? My instinctive response was to try to stop it, judge it, fix it, never allow it to happen again. My response was to attempt to teach him out of his innate intention. Flawed imperfect me, feeling betrayed by what is natural, innate, instinctive for another. I learned many a great lesson this week, the least of which is don’t let your retriever too close to anything that flies.

I can Only Imagine

2015-10-02T16:43:00.000-06:00

I found myself in a file by mistake this week. Funny, it just sits on the side of my everyday screen innocently but rarely if ever welcomes visitors. Its name: Emily Folder. Its contents, a variety of documents and old emails dating back to 2008. This barely visited folder is tucked tightly between two filing locations I use daily. One with contents filled to the brim with inspirations from a friend and greatly respected Spiritual Leader whose legacy book on Mysticism I have been working on for approaching two years. The other, a highly regarded educator, the namesake of my son’s school, on whose book I have been working since the Spring of this year. I don’t tip toe around these folders, I’m regularly throwing documents in them like a bull in a china shop literally emptying tens and tens of emails from the inbox into them daily. Yet, since 2012 there the folder emblazoned with the name Emily sat unclicked, unchecked, unopened, and for the most part unobserved holding the memories of a time of great vulnerability just a click away from my awareness. Yesterday as the aftereffects of the Supermoon’s Red Lunar Eclipse waned and along with it the restlessness I’ve felt in my bones for the past week or two for reasons I could not pin point I was emptying emails into both of these folders when I realized I had perhaps mistakenly dropped a few in the wrong file. One click, one small tactile move by my otherwise agile index finger on the mouse and there I was, face to face with Emily’s decree of adoption finalization.

I can’t honestly say I ever really read it, at least not once from start to finish since being able to hold my heart and pieces together while doing it was an impossibility I could not bear. But yesterday, I found myself staring at it almost by accident, if you believe in those…and faced with the opportunity to read it in a more stable state of mind, I seized the moment. Seeing the facts of the finalization, the change of her name, the guardian’s names listed as her official parents I found myself for a moment unable to catch my breath. Tears swelled and I could hear my heart beating in my ears as my eyes began to sting and my lip quivered. I observed myself in a deep state of emotional flux but from a higher place so I could watch the vulnerability and still move through it. I read the document from start to finish, then closed it realizing how close at hand it had been for the past three years. The moon. It was surely the moon that delivered this opportunity for growth on an otherwise uneventful day. I sat for a few minutes processing. Slowly, then sort of frenetically wondering if I needed to admit this vicarious exercise to Craig. I decided impulsivity would not serve me and I should digest what I read before another word was uttered and I shut my computer down and took the dogs to the park. But Spirit was having none of that shut down stuff, as today, from the same out of the blue energy, a tune from my past came on the car radio as I drove from errand to errand. This song was no ordinary Pop chart song. No sir. It was the song that Emily’s mom had on her phone as the ‘holding music’ while the network looked for her availability in 2010. I had listened to excerpts of that song, hundreds of times yet ironically, if you believe in that too, never in its entirety. The calls Emily and I placed to her when she was sent back to us by Child and Protective Services in 2011 netted a sense of familiarity to this tune that its very lyrics began to feel like wallpaper in the room Emily stayed in during her time with us. These were very tumultuous times during the years of her guardianship. But there jam smacked in the middle of my afternoon today, the Contemporary Christian song by MercyMe, as noted by Wikipedia, entitled, I can Only Imagine, was playing on my radio and for the very first time I heard it in its entirety. There I sat, at the corner of walk and don’t walk, a bustling intersection on the way to my son’s school weeping openly at the beauty of the words and the stale sadness and undigested grief in my heart.

Yesterday the declaration, today the musical remembrance, I know only that there is no such thing as an accident and that in some way, it was time for more closure. I hadn’t even realized it, but I had developed a rather casual yet purposeful inattentiveness over the years that had passed since the last time I wept solidly about the loss of my daughter. But whether or not time and space are just measurements made up by man, somehow between them I had grown up just a little bit more and in that expansion, that evolution, there was room for more healing.

Funny Looking Fruit

2015-09-19T13:24:00.001-06:00

This January will be the anniversary of the move our family made to California five years ago. The years fly by and the children we sat next to on our trek out aren’t as easily entertained by endless games of I spy and throwing a frisbee anymore. One of them is strangely taller than I am and the other one is fast approaching the same. There hasn’t been a moment we’ve lived in the nirvana that is the North County of San Diego that I haven’t been filled with an unadulterated appreciation for the true paradise that it is. 65 and sunny for the better part of 365 days a year less a few “like Africa hot” days in September. The drought has added a smidgen of bittersweet to the adventure of living here, but I’ve found a meditation in counting the seconds whenever I use water whether to water my plants or quickly rinse the conditioner from my hair. The dogs have come to find the temperate climate to their liking and often sleep out on the porch at night listening to the waves crash just a few blocks away.

I’ve found a surprising observation in that I love watching the “seasons” come and go and while that may sound tongue in cheek, over five years this New England girl has come to know the subtle changes despite the fact that the weather really never changes. This year, our second turn of those “seasons” in the beautiful colonial cedar shake house that suited the eastern girl in me, I really watched the growth in our yard as it shifted. For the second summer, I grew tomatoes, strawberries, a bevy of herbs, some odd looking cucumbers and a few peppers I was afraid to eat. While last summer the lettuce was rich and plentiful, my favorite being the arugula which is one of my favorite spicy leafy treats, this year, no lettuce sprouted at all. Perhaps it was in the timing of the planting or the drought, but the garden had its own mind this year. The day we closed on the house last year, we picked and messily enjoyed two of the most glorious grapefruit off our citrus trees. We ate them standing up in the back yard, their delectable juices dripping from our chins in our celebration of being homeowners once again after several years of rentals. This was our backyard! We were eating citrus from our own yard! It was surreal. Over the course of time, we ate lemons indulgently and were abundant in limes. This year, not one grapefruit, though the lemons and limes seem a bit more hardy and after a year of including them in every recipe I’ve found a lot less excitement from the peanut gallery at the dinner table anyhow.

My observation is interesting though. The careful watering has me in conversation and relationship with everything that grows in my yard, not the least of which is the rather historic avocado tree that still stands from before our neighborhood was anything but an avocado grove. Craig got up on a two story house ladder and picked a bushel of avocados and I love seeing people’s faces light up when we give them bags of them to ripen and enjoy.

When we moved in, there was a tree of unknown variety in the backyard. A little too close to the brick walk beside it, I worried its roots would someday pop the bricks up and make for a big expensive fix. The tree limbs were sort of bare though the height several stories tall and I didn’t see much use for it in the yard. I asked the gardener what kind of tree it was and he said it was a fig tree. A fig tree, I repeated out loud, and went on with my watering. Visions of Fig Newtons danced in my head, the sensory memory of biting on the soft gluten-filled pastries filled with sand-ish, snapping fruit that was sweet but louder than the average cookie. I loved Fig Newtons as a kid and made a mental note to research if they had yet invented a gluten-free variety. Asleep at the wheel, despite counting water seconds on every plant and tree, I woke up to a gummy mess all over the yard months later as those figs began appearing on the sparse limbs and with every small movement in the wind, the sticky milky blooms of fruit would toss themselves on the ground like oversized water balloons.

“Oh my,” I exclaimed to the gardener, “is there no way to keep this from happening? The ground is sticky and there are ants everywhere.” “No, Mrs.”, he said to me in taxed English, “it’s fig tree.” I knew this but I had yet to understand what that would mean to me. He proceeded to grab one off the tree as he explained that I must pick them before they take flight. “When they are purple, you pick them”, he said and he grabbed one and twisted it slightly until it released into his oversized and calloused hand. Milky froth was dripping from the end that had just been suckling on the branch. Drippy, gooey sap ran down his hand as I watched in relative horror. The ant colonies were gathering below as I stood counting the potential water seconds it would take me to wash the walkway. “Tear it like this,” he said, as he ripped the odd, ugly pear shaped fruit into two halves. “Then eat it like this.” I watched with dismay as he raised it to his mouth and scraped his bottom teeth upwards clearing the inside of its skin of its feminine looking interior. Its insides now dripped from his mouth, seeds stuck in his teeth, a look of sheer delight appeared across his face. “This, Mrs., is how you eat a fig.” Eat them all before they fall on the ground, he advised, as he raised his hands to the sparse branches.

I have to admit, I was afraid. It’s a scary, funny looking fruit. Well, not as scary as the prickly pear or some of the things that grow on some local cactus varieties. But the scope of my eating off the land until I moved to California was either blueberries in my backyard or strawberries at a farm where you pay the guy for a basket and you are given an apron and a map where to go pick. I trust this sweet man who cared for our neighbor’s yard when we rented while recouping from our traumatic life in Illinois. We hired him because he was relentlessly on time every week for the two years we watched him care for the neighbor’s yard. I rested the hose on the ground and reached up and yanked another milky pod off the tree. The outside was purple. “It’s good. Ripe,” he said as he gestured towards how I should tear it and then gesticulated how I should scrape its insides to get the fruit into my mouth. “It sure is funny looking,” I said as I began to lift it to my mouth. Fig Newtons danced through my mind as I bit into it for the first time. The sensory experience of a strawberry with a delightful sweet flavor and snap, akin to pop rocks, evolved as I emptied its skin into my mouth. Sap dripping down my face and my arm, I turned to him and noted he had a grin bigger than any grin I think I’d ever seen. I know he knows he changed my life that day and can now leave his tree cutting equipment in the car until the adjacent palm is in need of a frond haircut. I returned to my meditation of counting the seconds of water pouring from the hose as I began talking to my hydrangea and mashing the fig seeds still in my mouth between my teeth so excited to see what the new plum tree gifted to us by special friends will bring us in the coming years. Yes indeed, blessed to live in North County San Diego.

The True Definition of Insanity

2014-09-30T16:28:00.001-06:00

This article was picked up by Social Work Helper Magazine and can be read in it's entirety here.

The National Alliance on Mental Illness[i] reports that one in four adults suffers from Mental Illness. Take pause for one second of your day today to raise your eyes from your smartphone to look around you. See that woman over there? She’s one…keep it going. Count four people. Are they standing, sitting, or walking by you? STOP at four. Yes, one of those, is one of the 61.5 million Americans that will have a bout of mental illness of some form or another in a given year.

Here’s the zinger. One-half of all chronic mental illness begins by the age of 14; three-quarters by age 24. How old was your number four person as you counted?

The CDC[ii] reported in 2013 that an estimated 13 –20 percent of children living in the United States (that’s 1 out of 5 children) experience a mental disorder every year. Next time you are in a grocery store, department store or movie theatre, look up and count again. One small child hounding his mom for popcorn. Another running circles around his father while he tries to reign him in. Three. Four and a fifth, a nine-year old staring blankly into space as those around her engaged in friendly chatter. One of those children is suffering with mental illness. And although an estimated $247 billion is spent each year on childhood mental disorders, they are increasing and more than 50% of those children’s illness are not being addressed.

These statistics break my heart. My family experienced mental illness without resources in spades. I know we are not isolated or rare, however, and that is even harder to swallow than the outcome of what happened behind the front gate of my white picket fence. Families all over the country are being told to call the police, restrain their children, and medicate in their living rooms with the likes of prescription drugs that were once only common in state run mental health facilities. Until a child cries that someone is hurting them or hurts or worse, kills others, there is barely a framework of support for the family – often left with the finger of blame pointing straight in their direction.

Are they victims? The jury is out. The more important truth is that no one is taking responsibility for there being a bare bones band aid to support families raising the 20% of children that will become the 25% of adults with mental illness, if they survive their own battle towards self-destruction. More than 90% of suicides occur in those that have had mental disorders.[iii]

In October of 1980, then outgoing President Jimmy Carter signed the Mental Health Systems Act[iv], which had proposed to continue the federal community mental health centers program, although with some additional state involvement. Just a month later as Ronald Reagan on the heels of taking the presidency and probably before he’d even spent his first weekend in the white house no less read the entire Carter Mental Health Commission file, Reagan dumped the Mental Health Systems act and the appropriated funding to support the state’s programs was immediately blocked.

In this legacy of shame and disregard for the American people, President Reagan NEVER understood mental illness. It wasn’t for lack of exposure as it was reported that several of his own family members suffered from various levels of mental illness. Rather, it was more ignorance and a sheer lack of interest in identifying ways to approach and care for those struggling with it. In the end, much of the out-picturing of that move towards sweeping the issue under the rug became clear as homelessness of the mentally ill soared. No longer were there facilities or programs to support the growing need. No longer were there appropriations to develop new strategies or research to address the increasing incidents of mental illness. Board and care homes and state hospitals across the nation were bolted and to this day sit like empty horror houses, the haunting echoes of those that once sought care there now only ghosts in the halls.

It’s been a long 34 years since those first days when the shuttering of those services pushed so many back into the streets, homes, schools and of course jails. It wasn’t too long before everyone realized that deinstitutionalization of patients from state mental hospitals was a huge mistake. Crime and homicide doubled and tripled and the percentage of inmates with mental illness increased threefold if not more. And yet, nothing short of band aids were applied on the gaping wound not being addressed. Those band aids aren’t covering the wounds in families in this country. The statistics are undeniable. Mental illness doesn’t just crop up in the adult population, it often begins as young as five years old and there are so few resources for families who are parenting these children it’s ridiculous.

It’s been said that the true definition of insanity is doing the same thing over and over again expecting a different outcome. If that's the case the ratios of those who need support are four in four.

So, where does change begin? It begins with each of us. Speaking our mind, advocating for those who cannot advocate for themselves and making noise about the inequalities of support services for invisible disabilities. Eradicating the stigma surrounding the need for mental health support services might just be the first step of many, but until we take the first step, we’re not being accountable to anyone least of whom ourselves. Look around. Count to four. Know the strength in numbers. If two or even three in four stand up for the rights of one in four, change happens – for all of us.

[i] National Alliance on Mental Illness, http://www.nami.org/factsheets/mentalillness_factsheet.pdf

[ii] 3/13 -Centers for Disease Control and Prevention (CDC), Mental Health Surveillance Among Children —United States, 2005–2011

[iii] National Alliance on Mental Illness, http://www.nami.org/factsheets/mentalillness_factsheet.pdf

[iv] Mental Health Systems Act of 1980- http://www.presidency.ucsb.edu/ws/?pid=45228

What Defines Success in Parenting a Mentally Ill Child

2014-09-22T13:19:00.000-06:00

After six years of writing and rewriting, editing and tossing, querying and crying - my memoir, When Mama Can't Kiss it Better was released last week. In light of that, I've been asked the same question a number of times.

What defines success in parenting? I sure wish I had an answer that would enliven choruses of angels from the heavens, but after much consideration, my answer would have to be quite simple. Success in parenting is when you experience the unquestionable feeling of knowing you made every decision with love and the highest intention to create the best life for your child possible. It is my view, that right action, in and of itself, is the true definition of success in parenting.

That leaves much to be pondered about the outcomes of each of our children's journeys - as they are set forth from their birth. It goes without saying, their life's work or karma, is not something you or I or even they, outside of their responses, can control.

Maybe the world still wants to believe I failed at parenting my brain damaged, mentally ill daughter or maybe it’s just me giving airtime to my inner critic. There isn’t a day that passes that I go un-reminded and so no matter what mountains I move to continue to be the best parent I know how for my other children, I will forever be responsible for what happened with Emily. It's ok, now - so many years later but it wasn't then because I really wasn't ready to be accountable for it all. I was too busy fighting for our lives and defending my actions. For a long time, the obstacles of pain, regret and self-recrimination were only as distant as my burning the taco shells or losing a month’s rent to our landlord’s greed. The perpetual loop of blame for not being able to fix my daughter’s prenatal wounds played over and over in my head. You. It’s your fault! It happened because of something you did and because of who you are!

I was but a seat filler in the cheap seats during most of my daydreams as in my mind’s eye I observed myself scribbling my name on the lines of adoption papers, psychiatric hospital admits, guardianship papers, and finally forms giving up all parental rights to a child I love but couldn't help nor keep safe from harm or from harming others. Tears dripped onto papers of all repercussions as I heard my own voice repeating that common phrase we tell ourselves when life sucks and that we are given only what we can handle. With time and space I have come to see that we are not victims of the poor decisions of an alcoholic drug addict, my daughter’s since deceased birth-mother. No, we are not victims and I am not a failure of a parent. We must be accountable for our responses to the cards that we were dealt and folding those cards was the most difficult thing I have or will ever do in my life.

Outside of having her sent home for one major bipolar episode May through June of 2011, Emily has not lived with our family in nearly four years. That is not to say that any time during the first three years existed a moment when we could rest knowing she wouldn’t be sent home in a complete mentally ill state. That assurance just didn’t exist, until we signed those last forms and with it, every dream we had for our idealized life with our wounded child were GONE. Evaporated. As if they had never existed.

I have not heard her voice, her laughter, her cry, or seen her face in nary a picture in nearly two years. One would think that in that amount of time the reminders of the sheer madness we lived with during those years would have faded and that things would have settled. Hearts would have mended. Perhaps compassion would outweigh the relief of not living with mental illness, but more in truth, the foundation of our family still rocks as if by mini earthquakes every time there is a stressor. Perpetual mental illness prevails as the undercurrent of our daily existence because we will always love someone who struggles with it, be it here in our home or elsewhere.

The pain, the loss and the feeling of my inability to forgive myself for not being able to make it better that haunted my every minute has passed. I have accepted that eight years of life dedicated to managing my daughter in every way was not invalidated by the finalization of knowing in the end that I could not kiss it better. In that acceptance is a self-compassion that was hard won and often challenged, most definitely from the release of my memoir of the journey.

We were devastated. But like anyone who goes through a tragedy knows, the clock doesn’t stop ticking and the sun and moon continue to rise and set and life goes on. I won't say that time heals all wounds in a cliche sort of way, but it does give one perspective and being able to look at the eight years I had with Emily from outside of the noise of it all allows for a deeper, more meaningful understanding. I was just going about life the other day - picking up dog poop and folding laundry and I pondered the responsibilities I had beyond the tears that still sit just behind my throat ALWAYS for Emily and what happened to our family. My mind wandered beyond the deep missing I still feel inside for her to school lunches, chauferring, unconditional love, 2 three-course home cooked meals and the deep inner compassion I have found in accepting my journey.

For years, deeper musings and therefore internal energy was directed towards the sadness of my lesson of loving and losing. Of fighting the best fight I could for an innocent wounded child against all odds. And now, regret and the pain of loss creeps up on me only seldomly when I wander from the truth of knowing every decision I made was out of love and the highest intention to give my child the best chance at an amazing life. Yes, it's true, I still pine for the ability to pass the butter and not feel like I could cry as I look at the empty seat at our dinner table, but I understand and I accept and in that, I have found a sense of healing in my imperfection.

Ours is a story of unconditional parental love, joy, loss, deceit and betrayal. It’s a story about human nature and the frailty of the human condition. It's a raw story of truthful mothering and commitment. The perfection in unconditional loving is in giving it. It is not the outcome of having given it that makes it perfect. I am Lori, I am here on earth learning about love and letting go and mine is the story of a journey with a little girl who I could not fix but who I love from the depth of my soul. I am flawed and an, as yet, unfinished parent.

If you Could Wish for Anything, What Would it Be?

2013-11-08T22:40:00.001-06:00

It's been a long time since I blogged here. Life and work and the ongoing attainment of peace just sorta gets in the way whenever I try to sit and compose but recently I began reading a book called, The Right to Write and it has motivated me to share again. It suggests "don't worry about thinking things up to write. Instead, just sit to write things down." For me, that turned the light bulb on.

So many things happen in a day. So many big gifts in small moments. I write them in my head and then can't think them up again when I'm in front of my keyboard. I've decided that tonight I'm just going to write a few of those big gift moments down to share them because I know there's more joy in giving than in receiving.

Last night I took Olivia to her first EMDR session. Eye Movement Desensitization and Reprocessing. Well, that's a mouthful. If I were to boil it down to something simple, I'd say it's a great therapy for trauma. Olivia was recently diagnosed with ADHD but it's so hard to tease it out from the PTSD she was diagnosed with after years of sibling abuse by Emily. I've been in EMDR therapy for almost a year and it has definitely reduced the responses that I developed to cope with parenting a child with FASD so I'm excited to see if it can help Olivia. While I have words to use in the work, the abuse to Olivia happened before she had words to communicate with making it that much harder to give her an outlet to let out her rage and sadness. So far, none of the other therapies have worked.

I just looked back at that last paragraph and am a little bowled over with all the acronyms despite the fact that I know what they all mean. I could attempt to sum it up by saying there are a lot of labels we can attach to our wounds and our responses to those wounds, but the most difficult part is unknotting the skeins of response behaviors and triggers and fears and accepting that we're safe now.

There's so much in the news about PTSD and TBI (Traumatic Brain Injury) in our returning Veterans because of the disarmingly high percentage of suicide upon their return. Brain injury and recurring responses to stimuli, whether or not it continues to be present, can lead someone to do anything to end the pain. These are not issues to be swept under the rug. PTSD changes the look of any other diagnosis and unless you can address it viscerally, I don't believe a person ever gets past their trauma. I'd do anything humanly possible to help Olivia rid herself of this woundedness.

That said, I have experienced great results with EMDR and was thrilled to find someone who specialized in working with kids.

The therapist welcomed her in with a pad and colored pencils and invited her to color while she asked her questions. "So tell me, Olivia. If you could have any wish granted, what would it be?"

Surely a loaded question for any 8 year old. My mind tried to guess what she would say while she continued coloring. After about a minute she answered.

"I'd wish to have superpowers." Totally different then what I thought she'd say.

"What kind of superpowers would you want?" the therapist asked. This time she only needed about 10 seconds to think. She obviously knew exactly what she wanted to say.

"To freeze time; for everyone but me."

The therapist turned to me and whispered, "What a great answer! We can definitely use this in her therapy!" She turned back to Olivia. "Tell me more. How would you use it?"

Without hesitation she answered literally, "through my hands. It would shoot out when I put my arms out like this," and she held out her arms like a bird. "And I could also shoot it out my eyes by looking at someone."

"Wow. That sounds like an amazing wish!!! What a great idea! What would you do with it?"

"I'd freeze time whenever I was in line at the amusement park. Of course, I'd freeze it for everyone else but me, then I'd never have to wait. And I'd use it during math tests, to take as much time as I needed to do the work."

As she lost herself in describing all the amazing ways she'd employ this wish to have a superpower of freezing time, I sat back and just reveled in her creativity. I'd never have guessed she'd have this answer. Just when you think you know everything about someone, they go and surprise you like that. In the time she took to describe how different her life would be if given this superpower, every care in the world, every panic attack and emotional meltdown, every moment of fear disappeared. Poof. And as we all experienced life in this suspended make believe- there was no trauma. Just a little girl with a really cool superpower that could change the very way life unfolded.

The therapist is trying to build a timeline, which is a tool of the EMDR technique. It's going to be quite a task for Olivia as she has conveniently blacked out most of her life before the time Emily left our home. She remembered back to when she was four years old (a year before Emily left our home) and then she shut down and refused to talk about Emily. Refused to call her "sister" or even family. She referred to Emily's freak outs, but couldn't or wouldn't recall anything else.

When she got agitated in the process, the therapist gave her a breathing exercise with colors that calmed her down and then explained that the breathing technique is like her super power.

I like this therapist. She wove it all together all while teasing it all apart. It was a start. A foundation on which to build many more sessions to unravel years of being loved and hurt by the same person. The same person she either can or can't recall anymore. The journey she took that changed the way she sees any and all personal injunctions against her and the reason she responds so disproportionately to everything from the outside in.

There are times when I'm called to my breathing techniques when Olivia's behavior feels like Emily's and I find myself spiraling down into my overwhelming fear of having another child who I can't help. But the breathing grounds me in a place where I know that we're both safe and that this is just part of her processing the journey in her own way and her own time.

Thought for the Day

2013-03-24T10:32:00.002-06:00

What screws us up most in life is the picture in our head of how it is supposed to be....anonymous

Can the Sequester Really Hurt our Broken Mental Health System Any More Than It Already Is?

2013-03-04T22:24:00.001-06:00

Yes. A resounding yes. It is completely counter intuitive that just two months ago the headlines were jammed with demands for an overhaul of our undeniably broken mental health system while today's headlines are about cutting its lifelines even further.

"Sequestration cuts will be disastrous to communities and individuals living with mental health and substance use conditions. States have already cut mental health budgets by a combined $4 billion over the past three years- the largest single combined reduction to mental health spending since de-institutionalization in the 1970's. Cuts enacted by sequestration are estimated to reduce discretionary funding anywhere from 7.5-12% across the board." Source: Mental Health America

An excerpt from the same source cites the following jaw-dropping budget considerations:

1.13 million children and adults will be at risk of losing access to any type of public mental health support

6,500 fewer individuals in need of protection next year will receive advocacy services

1,500 cases of neglect, abuse, and individual rights violations will not be reviewed

1300 youth with severe emotional disturbances will lose access to treatment services

684,000 people will lose critical employment and housing assistance, case management services and school-based supports

One has to wonder... what the hell is going on? Can the sequester really cut more of what has been cut so deeply it barely exists?

More than 25% of all adults over the age of 18 suffer from some sort of mental illness and yes, a large chunk of that figure is actually preventable. YES. PREVENTABLE. Preventable mental disability is rampant in this country and it isn’t where you think it is.

The truth is that annually more than 40,000 children alone are born to American families with missing brain matter from in-utero exposure to alcohol. Yep, that preventable mental illness/disability is not rotting in a jail cell or in the shape of a burnt out postal employee, but is laying in a crib in a room decked out with sock monkeys and stuffed bears.

Is FASD, fetal alcohol spectrum disorder curable? No, it is incurable brain damage. Is it preventable? Your damn straight it is. In this absurd time of budget cuts when we most need support, doesn't it make sense to prevent what we can?

Mothers need to understand that it is a preventable form of destructive organic wound to the fetus fully avoidable simply by skipping the alcohol during pregnancy. Nine months no alcohol would reduce the use of tax dollars in a multitude of public areas and it would save lives and families.

For more than seven years I have been writing about our family's experience living with a child wounded by alcohol in-utero. The controversy lies in allowing everyone their freedoms but restricting what a mother-to-be can do while she is pregnant. It’s huge.

Ten years ago, my husband and I adopted a child for our own selfish reasons. We wanted to grow our family and loving a child born of someone else seemed just as natural to us as having one biologically. What we never counted on was deceit about the entire in-utero experience, no less her biological mother's own mental illness.

If a birth mother can stop drinking during pregnancy, I believe she will. It’s easy to give up coffee and steak tartare, but not booze, if she needs it to self medicate. The underlying mental illness is the culprit and only education will shed light on this huge national problem that is hurting our families and our society.

The longer we wait to address the issue, the more tens of thousands of children that will be born with preventable illnesses that can be the cause of unparalleled rage and mentally unstable behavior. There have been far too many tragedies at the hands of those that were unidentified as needing more support from our communities.

The time to act is now. Research supports the growing trend towards increasing mental illness in our stressful, chaotic era. In the ultimate irony, sequestration cuts to our already teetering mental health support system will leave us all needing the services that will be the first to be cut. It leaves me wondering, where will the next tragedy have to take place for the elephant in the room to rise to the top of the headlines again?

Is There Life After Custody Relinquishment?

2013-03-04T11:38:00.000-06:00

Custody Relinquishment. It's not as uncommon as the general public would like to believe.

The idea of being forced to decide between the custody of a child and accessing critically needed services for a child with severe mental illness is unspeakable -- but a stark reality for too many families. According to the recent Surgeon General's report, approximately 5% of children have severe and persistent mental illnesses. Frequently, these children do not have access to the treatment and services they need. As a result, far too many families are forced to do the unthinkable - relinquish custody of their child to the state to access services to treat the child's mental illness.

How wide spread is the problem? Neither the state or federal government track the number of cases in which parents must relinquish custody to access services for a child with mental illness. Despite the lack of government data, a 1999 NAMI report shows the prevalence of the problem. In this report, twenty three percent (23%) of respondents to NAMI's national survey of parents and caregivers, reported being told that they would have to relinquish custody of their child to access services. Twenty percent (20%) of the respondents ultimately relinquished custody. (Source: NAMI- read more)

I welcome guest author, Kristi Paulsen this week with an insightful and inspirational blog post about her experience post-relinquishment of her adopted daughter. Her book, Disrupting Grace, is a bittersweet tale of reactive attachment disorder and how it can destroy a family. Stories like hers, ours and probably yours are not isolated. They are so raw to tell and even more raw to hear, but in our journeys come hope that resources will be put in place for families like all of ours. It is our hope that by retelling our stories we can help each other through the heartache of the bittersweet solutions and inform others to reduce the stigma. And with this, I welcome Kristi.

God never wastes pain. I’d always believed that truth until I relinquished my adopted child. For the first time ever, I questioned it. After five years of pouring my life into my adopted daughter in ways that exhausted my time, energy, and resources, I was faced with the impossible choice of relinquishing her. Reality was staring me in the face, and it forced me to admit to myself that despite my efforts, she wasn’t thriving, my other children were in danger, and our family was coming apart at the seams. Walking through relinquishment, I experienced a kind of pain unlike anything I’d been through before. It signified tremendous loss and the sadness was heartbreaking. I couldn’t imagine a life following such a painful time. I wondered, “What was it all for? Is there life after relinquishment?” We all seemed worse for the wear after those chaotic, traumatic years.

Would I ever move past the grief and feelings of failure? For five years, my life had been consumed with therapies, doctor visits, and evaluations. I’d been submerged in the world of special needs. What would my life be now that it’s over? Who was I, apart from all of these things?

It’s been five years since, and I’m thankful to say, there has been life indeed following relinquishment. What interesting twists and turns have come and gone since then. Life today is full and meaningful. Whole and healed, and blessed.

It’s been said that anything of great value comes at a great price. If that is true, it seems we’ve made many deposits in the bank since then, but what I’ve realized is, that every payment has been an investment.

Following relinquishment, much of my time was spent trying to heal, and healing meant facing all of the feelings of despair, grief, hurt, and pain. I wanted out from the pain, but the biggest lesson of pain I’ve learned to date is that the only way out is through. I had to look closely into the present wounds of my heart, open some old ones, and let them bleed out cleanly. With the help of God, therapy, friends, and family, I’d finally discovered who I am – apart from the labels and the circumstances that had surrounded me. I’d realized how much I’d defined myself by those things.

Parenting our adopted child and relinquishing her exposed how much of that was true. I’d reached a place where I’d believed that who I was could not exist without her, or the story of her in our lives. As I began to heal, the truths of who I am began to emerge, and I understood for the first time those truths could exist with or without my adopted daughter. Today I have a sense of self, one that can no longer be enhanced or diminished by anything or anyone outside of me. It was completely freeing to come into this new reality. Nothing earthly outside of me has the power to change who I am.

This reality came just in time. Two years after relinquishing our daughter, our family suffered more heartache when my then-husband decided he no longer wanted to be married to me anymore. In some ways it came as a surprise, although looking back the signs were there. Walking through divorce was interestingly not too unlike relinquishing a child. It went against the natural order of things. It was effortful, exhausting, and sad. But this time I knew that even in divorce, I wasn’t losing who I was. I no longer identified myself with the titles I’d had, so when I lost the title of “wife,” there was a peaceful knowing amidst intense struggle that there was loss, but I was losing only that which was outside of me. When you have a sense of who you are, life around you can shift and change, but you’ll find you can stand with your feet firmly planted even as a raging storm is swirling about you.

Pain’s been a good teacher. My other daughter said to my son and me last Christmas, “I’m thankful for what we’ve been through. We wouldn’t be the people we are today, moving together in the direction we’re going.”

I believe now that all of life has purpose and meaning. Tony Robbins says, “When you begin to understand that all of life isn’t happening to you, but happening for you, then all of life is a gift.” Life happens for us to teach, grow and mature us to becoming fully the person we were created to be. If we’re open to the lessons, they are there, waiting to be discovered and revealed. My daughter, son, and I are learning how to look at life from that perspective. When you choose to believe that life’s circumstances exist to teach you things about yourself and how to better serve those around you, it’s exponentially easier to accept and embrace what comes with open hands, than to live in constant resistance to what is, fighting and pushing against your present realities.

All of life is a gift, and my life and the experiences I’m having aren’t all there is. The larger grounding perspective that has also been healing is the reminder to be ever-aware, conscious of the fact that the life I’m living - the story of my life, isn’t even about me. It’s about something much bigger. My faith allows me to understand that we are all part of a much bigger story, one God is writing that will one day bring about His redemptive plan for the whole world. I get to show up in a chapter or two of His story, and my intention and goal is to play my part well. When I think of this bigger story, it takes the pressure off having to strive for impossible perfection, to have to have things result in a “happily ever after” ending. I live for something and for a purpose that is bigger than me, than my life, and what can be achieved in the time I am here.

I realize looking back how much of my life had been spent surviving, resisting, or pushing my way through. There is peace in allowing life to come, and it is in peace we find power. Healing takes many forms and looks different to all of us, and your pathway to getting there is unique only to you. Take heart, and may you be full of courage. Wholeness and healing are there waiting for you on the other side. And when you get there, you’ll discover what it really means to be living beyond your circumstances. “Life” doesn’t consist of what is going on around us, it’s our perception of it. The question I asked years ago, “Is there life after relinquishment?” has been answered with a resounding “yes!” There really is life – one with meaning and purpose, one that is full and rich and lovely, following whatever it is you are facing today.

About the Author

Kristen Paulsen is an adoptee and mother of two. She has a B.A in Social Work and lives in Boulder County, Colorado. She brings a passion for living in truth and community to each page of her story. Her first book, Disrupting Grace (www.disruptinggrace.com) can be purchased from Amazon.com by clicking here.

The Brain: Is it the Final Frontier?

2013-02-21T16:26:00.000-06:00

With the traumatic violence this country has seen over the past six months in combination with the recent year’s increase in suicides by sports figures that posthumously tested for traumatic brain injuries (TBI), the brain is becoming the new, new frontier; perhaps even replacing NASA’s efforts in space.

In his state of the union address earlier this week, President Obama announced a new brain mapping undertaking (Brain Activity Map) using the Human Genome Project spearheaded by the Bush administration in the 90’s as a model. The new project goals are lofty. Not only will the brain’s wiring be mapped but its circuitry will be studied for purposes of understanding exactly how each neuron interrelates with the others. With March being Brain Injury Awareness month, his timing couldn’t have been more perfect. One might guess, in fact, carefully choreographed.

Finger pointing at mental illness and neurological-based differences as the cause of the intent to kill others and one self is increasing the stigma around illnesses “above the neck” as Dr. Drew Pinsky noted in an interview with Fox News this week. It seems everyone is taking time to consider this 3 lb object at the top of the spine of every human on this planet.

Every brain has two sides. Each hemisphere of the human brain has four distinct sections called lobes; the frontal, parietal, temporal and occipital. These four lobes are responsible for processing a significant amount of information.

The frontal lobe, which is the brain’s home for executive functioning (planning and reasoning), controlling emotions and speech is, along with the temporal lobe, affected most often by brain trauma, resulting from lesions that transpire when bumps, bruises and concussive events occur. The temporal lobe processes auditory information, helps distinguish smells and is essential for understanding language. A lesion in the frontal lobe is likely to make a patient more aggressive or violent.

Researchers have found 8 major symptoms associated with damage to the temporal lobe:

Problems with the auditory sensation and perception
Difficulty attending to auditory and visual stimuli
Visual perception disorders
Problems organizing and categorizing verbal information
Language comprehension difficulty
Impaired long-term memory
Changes in behavior and personality
Changes in sexual behavior

Accidents and organic trauma’s like FASD and stroke often also involve deeper layers of the brain which then in turn affect the limbic cortex and the even more primitive brain stem. The limbic area drives us to repeat actions that produce a pleasurable result and stop doing things that are displeasurable. One can almost map the type of fissure or damage in the brain a person must incur to result in increased anger, perseveration, and full changes in overall behavior and personality.

Curiosity in the brain and its functions are not novel in any sense of the word. But with heightened interest in dissecting the minds of rampage killers who otherwise tip-toed through their lives going unnoticed by most, the brain is the best place to start. De-stigmatizing all illness above the neck, educating those not directly affected by brain injury and mental illness either stemming from it or not, and providing resources for those that are affected is imperative. Blaming doesn’t make it go away.

There are many who hope the brain mapping project will lead to further data about the brain’s neuro-plasticity and its ability to regenerate new brain tissue. This research could have a profound effect on billions coping with everything from Alzheimer’s to depression. It would change the constellation of our entire universe confirming once and for all its rightful ownership to the term final frontier.

Also, written by Lori Gertz The External Brain

About the Author:

Lori Gertz is the author of the Amazon.com bestseller, Be the News: A Guide to Going Viral With Your Human Interest Story. A writer since she was six, her love for proverbial ink on paper led her to a 14 year magazine publishing career followed by 15 more years running her own strategic marketing company. She is the author of several longstanding blogs, multiple published articles and is a national advocate for the awareness of Fetal Alcohol Spectrum Disorder. Her website can be found at www.lorigertz.com.

The External Brain

2013-02-17T20:24:00.001-06:00

March is Brain Injury Awareness Month

Acquired brain injury is not the kind of thing anyone wants or plans on so unless you know someone who has it, you wouldn't know...but maybe you should. There are two known types of brain injury.

Traumatic brain injury (TBI) commonly occurs when there is direct impact to the brain with some external trajectory. TBI’s (oddly but not surprisingly) occur more frequently to men by way of accidents, be it sporting or other type of speed oriented activity like riding motorcycles, automobiles, bikes or any bevy of a boatload of expensive boy-toys. TBI’s have had more time in the headlines in recent years with many well-known football celebrities proving them more common. The tragedy of TBI in sports is that it often isn’t identified until the player commits suicide, which is sadly common to those struggling with it. This full article is now available on Specialneeds.com HERE

For more information on “external brain” techniques see the following websites:

http://come-over.to/FAS/externalbrain.htm

http://www.fammed.wisc.edu/fen/strat.html

http://www.fasdwaterlooregion.ca/strategies-tools/external-brain

http://www.fasdlane.com/

http://hopefasd.blogspot.com/2012/08/fasd-my-story.html

Visual Cards: http://visuals.autism.net/visuals/main.php?g2_itemId=133

More Visual Cards to help those with social skill deficits: http://visuals.autism.net/visuals/main.php?g2_itemId=100

These books were written by people struggling with acquired TBI giving us much insight into their worlds and the worlds of those with FASD who are unable to communicate their struggles:

TBI Hell: http://amzn.to/Z9oKnI - Geo Gosling, acquired his TBI in a bike accident
TBI Purgatory: Comes After Being in TBI Hell: http://amzn.to/XlqCts
Over My Head: A Doctor's Own Story of Head Injury from the Inside Looking Out http://amzn.to/12ZYa0K

Read more on TBI by Lori Gertz: The Brain: It is the Final Frontier?

Designing a Future for a Child with Special Needs

2013-02-15T23:15:00.000-06:00

I'm writing over at specialneeds.com again....come visit!

Making decisions for others is never easy. In fact, it’s probably one of the hardest things one can do for someone, especially if that person is their child. When a family is coping with mental illness and intense special needs and a parent is charged with not only choosing interventions to support what a child’s life will look like as they grow but also what their adulthood will look like long after they themselves are deceased, the challenge becomes overwhelming. The alternative to not making the decision to support the child and instead controlling them dis-empowers the child who might then lash out and become more oppositional and self destructive the more a parent insists on them conforming.
The emotional weight of making choices for someone else can cause a tremendous amount of anxiety and stress not to mention an underlying feeling of dread. Read more here...

Special Needs In Our Homes: A National Discussion That Must Continue

2013-02-06T13:31:00.000-06:00

Published today on specialneeds.com....

Continuing an open dialogue with the nation’s media is imperative for those of us raising special needs children in our homes. We need support and to effect change on the way we get that support for our loved ones. Creating a national discussion is the best way to effect change. Being at the center of that discussion is not an easy place to sit, but well worth the outcome if it means our children get what they need and our families stay together...read more

Be The News a Bestseller at Amazon.com

2012-12-29T01:18:00.000-06:00

Critical Mass is what we need to effect change in our mental health system! Be The News will empower you to know how to stand up and speak to the media about a meaningful issue that affects your life, your family and your community! We can do this! We can effect change with many voices!

The reviewers love it and I am ever humbled! Be the News: A Guide to Going Viral with Your Human Interest Story has marched its way up the ranks of bestselling books at Amazon to the #1 spot in its category.

After much rumination and over 2,000 hours spent on writing a memoir of our personal family story I found myself wondering about the 15 minute of fame rule. How do news stories that dominate the landscape of every media venue in the country end up looking like isolated examples with nary a trace of change effected by them just a few months or years later? Is it apathy or is it just because we are a flash in the pan society? I refuse to subscribe to either of those possibilities and can merely surmise that there just aren't tipping points on the meaningful issues at the foundation of the stories. So, I set aside my memoir to write a simple to follow How-To book about going viral.

It's hard to risk your reputation for something you believe in. I cover this extensively in Be the News. It's hard, but it's not without a well won sense of accomplishment if it helps to effect change. There are specific steps you must take in order to prepare your story for release. It is key that the reason for your story is not ego-centric but issue or story-centric and that you position the mission of your decision to speak out ON TOPIC. Again, identifying a topic that is relevant and newsworthy already puts you in the "back story or side-bar" category to most journalists and that moves you closer to having a venue to speak through.

Carrying a media megaphone isn't the way to ingratiating yourself with journalists but carefully plotting who you trust with your story based on their experience with others like it, as well as their overall integrity is. If you have a story, business related or otherwise, that you would like to see the media grab onto, there are specific steps you must take in order to gain the attention you want. Be the News is the only how-to guide offering the insights as to what those steps are.

My seasoning of over 26 years of public and media relations and strategic marketing expertise didn't even begin to prepare me for the days I hid in my basement avoiding the media on a hunt for my story. I wrote the book from the standpoint of the things I did right in addition to the things I did wrong, but mostly from the standpoint of things I didn't think about at all as an outgrowth of the intention to advocate on a larger issue.

Our story started a national discussion. If I were to be a little more candid, what it started was a real (and sometimes nasty) national argument. Did it effect change? If our appearance on live national TV and our 10,000+ newswire pickups and radio interviews saved even one child from the legacy of FASD, then yes, I believe it effected change! Would I like to see more change? You bet! Which is why I wrote Be the News. With this step by step guide to going viral with your story, more people can stand up for their right to effect change and make a difference. So go ahead, think about going viral, but don't do anything until you read Be the News. It will prepare you in a way no other book will.

Calling in "Afraid"

2012-12-17T16:46:00.002-06:00

On the aftermath of the Newtown, Ct. Tragedy

I held my teacup in one hand while holding the steering wheel in my other as I barely inched forward in bumper to bumper traffic this morning. The coastal mist settled on my windshield and the sunrise was nearly obliterated by a passing cloud. My seven year old sat in the back seat like any other day, wiling through the half hour freeway commute to her school. It was like any other day, but it really wasn't.

Something told me to look in the rear view mirror as I began a conversation with her and I noticed tears streaming down her face. Heck, we were only 5 minutes into the ride and no "no's" had been exchanged. I couldn't imagine what was wrong.

"What's wrong baby?" I asked knowing we hadn't been in the car long enough for car sickness to have ensued.

"My back...my head. I just don't feel good mommy."

"But you were fine just 5 minutes ago doll. Tell me, is there something else going on?"

"No. I just want to stay with you today. I don't want to go to school. I don't feel good. Please let me stay with you."

And there it was, it was undeniable. It was out there for me to see and feel- fear. Fear of going to school, fear of not being home, fear of being hurt, and it was palpable and her tears flowed.

Like most parents I'm sure, I picked her up a little early last Friday. There was no avoiding the horror of the tragedy in Ct. and as an NPR hound I listened to the coverage throughout the day. At pickup, I hugged her a little tighter, I gave her many extra kisses, but I was also a little more melancholy than usual and she noted it.

My standard "tell me about your day sweetheart" greeted her, though I was a bit less excited than normal.

As she adjusted her little body in her car seat and pulled the seat belt across her chest she said, "Mrs. R told us that something bad happened today and then she had to leave the classroom. She couldn't read to us and instead put Nemo on and left."

"I understand," I told her trying hard to fight back the tears that had been stuck in my throat for the better part of the day.

"Something pretty sad and scary happened in the world today and a number of children were hurt."

"What happened?" she asked curiously.

I delivered an age appropriate version of the day's event without the gory details.

"That's terrifying mommy. I hope something bad happens to the person who hurt the children. I bet the mommy's and daddy's are very sad."

"Yes, it is. And yes, there will be consequences though they will be complicated. And yes, many, many mommies and daddies are very sad." I paused. " It is very important to me that you know, you are very safe in your school. There are many precautions in place..."

"But weren't those things at that school too? They cared about those children as much as our school cares about us, right?"

I was stunned at her seven year old insight. Yes, terrifying and yes, scary. And yes, precautions can be in place and still fail.

"Yes. Sweetheart, I'm sure you are right. But this was a terrible tragedy and sometimes..." I found myself without words as the emotion of every issue I have about loss overwhelmed me.

"Sometimes things have to happen," she finished my sentence seeing me all flummoxed. "I know, you always say that everything happens for a reason. But for what reason would little children be hurt?"

"I have no answer to that question baby," I said breaking my own rule and wiping my tears and nose with my sleeve.

"Ewwww......" she said giggling.

"Yes. Ewwwww......." I agreed. And the tension and conversation broke there.

It's not as if a tragedy like this happens where children are killed, issues of mental illness loom large and it is all forgotten the next day. Much the opposite. It is more that we build it into our understanding of life in these times; of danger in the era we are raising our children. We know it in our minds, we feel it in our souls, and we carry the sadness that all of mankind holds for the loss of those beautiful children and their families in our hearts. And, we live on. We continue to breath if not only because we cannot choose not to.We learn to accept loss and in that, sometimes as a society we become apathetic about issues that really matter because we think we can't change them.

The weekend passed. The final Chanukah gift of a trampoline brought muscle aches to Craig who took 9 hours to put it together and joy to the kids who jumped tirelessly...and with that Monday morning arrived.

And there, in my backseat was my otherwise stubborn and a little sassy 7 year old feeling the truth of her very real and understandable fears.

"I understand." I said after taking a few minutes at a gas station to assess her condition, "let's go home, ok?"

The color in her face changed with her expression and even though the tears were ever present I could see her relief in my answer.When we got home, I called her school.

"Hi. Olivia won't be in today. No, not sick....afraid."

No surprise to me, she wasn't the only one.

The Overwhelming Choices of a Parent

2012-07-17T21:05:00.002-06:00

I am guest blogging this month...The rest of this article can be found at www.Specialeducationadvisor.com.

Making decisions for others is never easy. In fact, it’s probably one of the hardest things one can do for someone, especially if that person is their child. When a family is coping with mental illness and intense special needs and a parent is charged with not only choosing interventions to support what a child’s life will look like as they grow but also what their adulthood will look like long after they themselves are deceased, the challenge becomes overwhelming. The alternative to not making the decision to support the child and instead controlling them dis-empowers the child who might then lash out and become more oppositional and self destructive the more a parent insists on them conforming.

The emotional weight of making choices for someone else can cause a tremendous amount of anxiety and stress not to mention an underlying feeling of dread.

Perhaps the hardest part about making the decision about what your child’s future will look like is accepting that it isn’t going to even slightly resemble what you dreamed of when you fantasized about their life. Read More...

The Prepositions of Parenting E

2012-07-16T21:17:00.000-06:00

in
Struggling in the waiting room.
Struggling in the grocery line.
Struggling in the doorway.
Struggling in the closet.
Struggling in the car.
Struggling in the parking lot.
at
Struggling at the hospital.
Struggling at school.
Struggling at dance class.
Struggling at the horse farm.
Struggling at a birthday party.
Struggling at home.
with
Struggling with the seat belt.
Struggling with the clothes.
Struggling with bathtime.
Struggling with mealtime.
Struggling with playtime.
Struggling with TV time.
Struggling with reading time.
Struggling with bedtime.
Struggling with letting go.
to
Struggling to understand.
Struggling to appreciate.
Struggling to empathize.
Struggling to translate.
but
Struggling but loving.
Struggling but appreciating.
Struggling but trying.
Struggling but committed.
Struggling but accepting.
within
Struggling within.
without
Struggling without.

Reposted from Sept 2010 ...linear time has left wrinkles but not healed loss.

Another High Profile Case In Illinois

2012-07-11T15:18:00.000-06:00

Today I received several emails about a new high profile case of a parent of a special needs child in Illinois. Eva Cameron, parent to 19 year old Lynn Cameron allegedly abandoned her daughter, who has the mental capacity of a two year old, outside of a bar in Tennessee.

"Lori," one of the email's read," did you look into driving E to Tennessee when you couldn't get services for her in Illinois?" I was dumbfounded. Tennessee? Tennessee was lurking in the shadows of our story as it was the home state of the mother who had just put her Russian adopted son on a plane alone with a note of "return to sender" in his shirt pocket. No less, I had to pause for a moment. This email was from someone who thought me the kind of mother that could abandon my then seven year old daughter outside a business in another state?

I've just written an article on how sensationalized journalism does no one justice and was hoping to place it in a venue that offers credibility and validation to the travesty that is our mental health system. Perhaps now it has more of a shot than ever of getting that attention. Another parent, no less another parent in the sad midwestern state of Illinois, driven to the lowest of lows, to find help and resources for someone she has loved and cared for for nineteen years.

I plead with you to comment on this issue wherever you come upon it. With mental illness at its highest rates in history it's only a matter of time until this lack of support touches you or someone you know personally. Having been judged for making a decision that was inhumane punctuates the need for alternatives! While our cases seem isolated, they are not. Custody relinquishment and abandonment are often the only alternatives a family has. I do not condone what Eva did any more than I condone what the mother in Tennessee did with her adopted son two years ago, but I did not walk in their shoes. I walked in my own and wake up daily with the reminder that with the right services and resources we could have maintained the integrity of our family. If the hole in my heart doesn't completely serve as the reminder, the empty chair at our dinner table does. Please write your representative and comment on the stories you hear of how parents were forced into making decisions they wouldn't have had to if the mental health care system wasn't so broken.

An Excerpt from Mama Can't Kiss It Better: An Idealized Motherhood Lost

2012-05-28T21:27:00.001-06:00

Formulaic relationships with our children warp all of our expectations. The problem begins when we undertake the complexity of these connections with the assumptions that follow those expectations. You give your children love and they reciprocate, right? Even Pollyanna mommy’s have good days and bad days. Hell, a relationship that only reflects the good days is a crock of shit because in what world would parents and children honestly agree on everything? In what world, would anyone agree on everything? I was never delusional enough to think I could create the perfect family.

In my universe, “Hi sweetheart, how was your day?” was me risking the exploration of the deepest, darkest and most vile of responses. It certainly wasn’t the Dr. Spock era when such a carefree question might have been met with “It was great mommy. I got to play jacks at recess and they served popsicles with lunch!”

Parenting Emily transformed me. The volatility of her behavior digested my meals of delicious out-of-the-mouths-of-babes conversation, cooing, and first words and delivered reflux of chewed up rage and disgust. After dining on her “I hate you’s” I was left always wondering how bitter dessert would be. The whole process of watching my idealistic understanding of what parenting might taste like shift from inside my own mind made me want to wretch. This had to affect the other children, it just had to.

“Mom, why are you crying?" a 10 year old Gabriel asked me one day when he found me on the end of the driveway with tears staining my cheeks.

I didn’t want him to look inside me as I lowered my head against my sleeve to hide the desperation in my face. He could see it. He could feel it. Hell, he could taste it like one can taste cotton candy as it wafts in the air at a cheesy roadside carnival.

“I’m so sorry things are so difficult with your sister,” I said sucking emotion back into my chest. Suppress. Suppress. Don’t let him see you cry, I thought. My ten year old, then nearly as tall as me stood over me blocking the sunshine that had been warming my unwashed, bed- head. I hardly had the desire to shower except to wash off the remnants of her most recent rage.

“Mom,” He was shaking my shoulder as I wandered deeper into my own mind hypnotized by the sound of her most recent screaming over and over in my head. “MOM! Come inside. You are frightening me and Emily is going off the wall. I set up a video for Olivia but we need you. We need you inside.”

I need me, too, I thought as I stared at my fanned fingers, noticing how mangled they looked in their aging skin. What happened to being able to cry and make it all better? What happened to having disagreements and then making up? What happened to my idealized vision of a family that didn’t include resentment, anger and unmet needs? What is happening to me? This isn’t the way it was supposed to be, I thought as I pushed myself up onto my feet. Where is my fucking hard won peace?

My heart ached for him as he walked ahead of me towards the house. And what about his childhood? He was filling in for me as parent and policeman while his father worked to pay the hospital bills and we drained his college account for therapies to change a brain that wouldn’t comply.

“I’m sorry sweetheart. I’m so sorry” I whispered towards the breeze that was created by his swift movements. “I never meant it to be like this.”

About the Author: Lori Gertz (1963-) was born and raised in Western Massachusetts. A writer since she was six, her love for proverbial ink on paper led her to a 14 year magazine publishing career followed by 15 more years running her own strategic marketing company. She is the author of the Amazon bestselling book, Be the News: A Guide to Going Viral With Your Human Interest Story, several longstanding blogs, multiple published articles and is a national advocate for the awareness of Fetal Alcohol Spectrum Disorder.

Holding on to present does not negate the past

2012-04-25T23:13:00.000-06:00

I’ve been learning the Healing Codes as part of my continuing education in the energy medicine field. I spend an average of 2 hours a day studying Homeopathy, an hour or two a day becoming certified in Interactive Metronome (which is a great modality for ADHD, Autism, Aspergers, traumatic brain injury, etc), and an hour or two a day doing energy work with a dear friend who is dying of Lou Gehrigs Disease (ALS). Amidst all that is life, kid schlepping, grocery shopping, meal making and the like. I punctuate every evening by spending an hour or so doing the Healing Code manifestation exercises and during a written exercise the other night I realized out of the blue that perhaps the reason our house in Illinois hasn’t sold after over 15 months on the market, isn’t altogether due to the economy. Perhaps, and the more I think about this the more I subscribe to it, I am holding onto the house in some unconscious way and that is why it has not sold.

Now you ask, why would you do that Lori? Don’t you realize the long-term financial implications of holding onto a house that literally loses appraised value with every day that passes in these economic times? I do, I do, damn I really do! The mortgage is like a cleaver hanging over us never mind all the liens we have against it for all of E’s medical bills. Last August, I buried a St. Joe and I said my emotional goodbye for the last time, shut the door and took a cab to the airport that took me to So Cal where we live in rental and enjoy the void of responsibility attached to the costly issues of home ownership. So, what is all this drivel about?

Turnberry Lane, Long Grove…the last place I was Mom to one of my children. In the midst of manifesting a buyer for our house, I find I cannot fully envision letting go of the place that represents the last connection I have to parenting my daughter.

A facebook friend of mine reminded me tonight of the pain she experiences every time someone asks her how many children she has.

“I never know how to answer it,” she says knowing I know exactly how she feels.

She, too, had a similar experience…a child, FASD, having to place her outside the family. Her experience was more than a decade ago and yet her pain, like mine, is so fresh. Like a scratch and sniff, brought to life every time someone asks a question as benign as, “How many kids have you got?”

I guess I never heard the question before but now, I feel like someone asks me daily. I will always have three children because I love them all and I parented them all. The question of success or failure shouldn’t even come up, as no matter what happens with any of our children, there seem to always be regrets and dashed expectations…mostly of self, because as our children grow, they begin to understand why we did everything we did and they respect that we did it out of love. Whatever it was that we did as parents was done with a pure heart motivation, unconditional love.

In my case, that meant giving up my role as the primary caregiver of my daughter and turning it over to someone who was, for whatever reasons, so much more capable than I was to help her. I know I tried everything when she was living with us and now I devote the better part of every day to learning about more solutions to support children like her. I couldn’t bridge the support for her, but I’ll be damned if I let any grass grow under stagnant feet that aren’t working tirelessly to help others like her.

All that rewarding work aside, the need to hold onto the house to continue to define myself as “once a mother to E” affects me no matter how many days or months or even years have passed. I am grieving again. And it’s so deep now I can hardly touch it.

I found myself at the beach today, trying to soothe that inner grief and in some small way thought the pounding of the surf could soothe that deep place. I walked for a while, so slowly others raced by me leaving their bare footed indentations in the sand. I bent over to see if I could feel the energy that resonated from the footsteps before the surf washed them away and was struck at how this spoke to the grief in my heart about E. I was there, like the footsteps. I was mom, and then the surf rolled in pounding at first then rolling out over the impression of a foot that belonged to a human being with a heart and like that, it was gone. But it was the natural order of things, it wasn’t traumatic, there was no grief in the disappearance of the only proof that someone had just stepped there. The fact that a person had just made that impression was not any less a fact because it wasn’t visible anymore. It was just part of the past. This is my grief’s story. At least, for now…as there is no permanence where she is and life as we know it today could all change tomorrow. But, so, could the tide...and perhaps even the real estate market if I just let go.

Please blog an update on E

2012-04-23T14:28:00.011-06:00

So many of you have written and asked, how is E these days?I know it's been a while since I last blogged but if pressed for an answer, I would probably say...she's a work in progress...mostly stabilized, sometimes notsomuch; and sort of like watching Ground Hog's Day, that will probably be the update until her mental health deteriorates or a major manic episode causes all havoc like last May. To that end, this very simple question is so loaded.

FASD (Fetal Alcohol Spectrum Disorder) is a medical condition and E was born with it (though not diagnosed until she was nearly 3 when her birth mother's lies were exposed) because her birth mother drank while she was pregnant. The booze was considered the most benign of the things her birth mother ingested while taking and shooting chemicals I can hardly pronounce filled out the rest of the stomach turning list. Truth is, the alcohol crossed the placenta (while the drugs - prescription or otherwise- did not) so it's what did the most damage to E's brain. What could possibly have been going on with her birth mother that she was doing all these drugs and self medicating during her pregnancy? Addiction, certainly. Mental illness, no doubt. We will never know the whole picture because her birth mother committed suicide before we had a chance to confront her.

The co-occurrence of secondary disabilities within those diagnosed with FASD's ranges around 75-98% for the obvious reason; the occurrence of mental illness in her family tree. The only light in a very dark tunnel is that while the condition of FASD itself is incurable, each of the individual secondary "symptoms" of that disability, including mental illness, are in fact, somewhat treatable.

There are tools and techniques for the ADHD and the behavioral dysregulation, and medications for the bipolarity (though with FASD if the brain matter is missing the drugs never really work without complication). There are cognitive behavioral therapies to help reposition the inner-dialogue and neurofeedback to help level out the brain waves and ability to self-calm. There are various types of attachment therapies along with so many more supports that can be employed, that it's almost trial by fire. Treatment becomes about attempting everything and anything at the most desperate moments and seeing what works. The challenges, of course, are the economies (COST) of trying everything one has heard good things about, finding them in locations that make sense and getting them often enough to make a difference and lastly, compliance by the child/adult.

E struggles with Reactive Attachment Disorder, Bipolarity, ADHD, and FASD...and when I say struggles, I do mean struggles. Her view of the world is constantly colored by the effect of one or more of these co-occurrences in her life no matter what interventions are in play. That said, there are months and months of stabilization lately with the support of her incredible and patient guardian family and their attachment therapy, her homeopathic remedies and the ideal school she is attending. On any given day she can be out of sorts and break everything in the room in a manic episode of rage OR she can attend school like a cherub, play nicely with others or on her own, set the table and do her homework before going to bed when asked.

So, for those of you who are curious...as many are...if the change from our home to another home made the difference in her life, yes it has (though it is not a permanent solution until her guardians say it is) and she still experiences the same episodes of mania there as she did in our home.

Am I the devil incarnate that she needed to get away from? No, I certainly am not, though many would like to pin that label on me given our culture that believes mothers are easily to blame for all children's problems. E is much more successful where she is. Her guardian mother and father have incredible gifts and talents with her disabilities that we, no matter what advice or support I sought out, just didn't have. She is having a real childhood there which she wasn't having in our home being in and out of the hospital and inappropriate school settings. I say often that I ignore those that judge in ignorance, because I know that the painful decision I made as a parent was the right one for her and that comes from my heart, as broken as it is when I think about the void in our family landscape.

From the NYT Magazine: The Wonder Dog- A FASD story of hope and Chance(r)

2012-02-09T13:11:00.002-06:00

I am proud to know Donnie Winokur and hold her and her amazing family in the highest esteem. Her publisher is a friend and 3 years ago when things were accelerating with our struggle with E's FASD's she suggested I contact 4 Paws for Ability about training a dog to help E like the one being trained to help Iyal. So, we rescued a large breed dog at the local shelter, E's pick, and we contacted the agency (a step too late) to find out that his breed was just too protective to work with. We were heartbroken, as we had already fallen in love with our Obi-Wan and were not going to part with him. Though we had 3 other dogs at the time we couldn't consider yet another lab/golden service dog in addition to our 4th dog in Obi. The house felt like a zoo, but truth be told, Obi, even without training, had some calming effect on her tantrumming, though in the end, not enough to keep her safe.

I am so grateful to the Winokur family for being so open with their story and to the author of this article for her heartfelt retelling. It means the world to all of us who face the realities of parenting a child with FASD. The expansion of the awareness of this condition is integral to wiping it out. Despite what anyone says, there are no conditions under which it is ever ok to drink during pregnancy. Never.

In May 1999, Donnie Kanter Winokur, 43, a writer and multimedia producer, and her husband, Rabbi Harvey Winokur, 49, beheld the son of their dreams, the child infertility denied them. Andrey, a pale dark-eyed 1-year-old in a cotton onesie, held in a standing position by a caregiver, appeared in a short videotape recorded in a Russian orphanage. If the couple liked the little boy, they could begin the legal process of adopting him. They liked the little boy very much. Read More

Is it Time to Look At Therapeutic Schools?

2012-01-18T21:24:00.001-06:00

I've begun to write for a few blogs of special interest to my experiences. Below is an article I've written this month for Special Education Advisor.com.

Making huge decisions in times of trauma is never an ideal situation. Alternatively, finding the time to be prepared with potential options and solutions for children struggling within the confines of their current educational setting isn’t always the easiest thing to do either.

Many of you know the tell tale signs that your child’s needs are not being met in their current educational environment. Whether they are in a least restrictive setting or a most supportive setting either within the classroom, often times what is demonstrated is a more rageful, dysregulated child at home when, at school, it takes them more and more effort to keep it together. Perhaps the school tells you things are fine in your IEP meetings and that you need more family therapy but you know in your gut that your child’s needs are being placed second to the underlying financial woes of your district.

If your child is especially disruptive in class, the district may place them in a “behavioral intervention” setting when the origin of your child’s behavior might actually be organic and not premeditated or purposely oppositional. In that setting, the academics come secondary to the behavioral management and so the child often falls behind the learning curve of their skill abilities. (Read More)

A mother's love triumphs over the struggles of a mentally ill child

2012-01-06T15:10:00.003-06:00

My interview with Tonisha Pinckney, Examiner.com Published January 6, 2012

Parenting is more about love than biology. It is more about love than skill. Parenting a mentally ill child does not require any more love than it would to raise any other child. Raising a mentally ill child does come with more intense challenges to that parental love.

One of the greatest struggles a parent of a mentally ill child faces is that of whether they feel they have enough love, strength, and wisdom to raise their child to reach their full potential. They struggle to see past the prognosis focusing on the child. Parents of mentally ill children not only face the challenges attached to their child’s illness; they also face the challenges found in raising any developing, maturing, productive, energetic, talented child.

Lori Gertz is a parent who faces those challenges head-on with love. An adoptive parent to a mentally ill child, Lori was under scrutiny early in her parenting journey. The burden was on her to prove an illness actually existed and that she, Lori, was not to blame for her child’s struggles and difficulties. Read the full article here.