On The Need to Feel Normal When Nothing is Normal

An excerpt from I Know Why the Caged Bird Sings by Maya Angelou and an essay on special needs parenting (forgive the long excerpt, it’s worth the read)…

“In our society, where two-legged, two-armed strong Black men were able at best to eke out only the necessities of life, Uncle Willie, with his starched shirts, shined shoes and shelves full of food, was the whipping boy and butt of jokes of the underemployed and underpaid. Fate not only disabled him but laid a double-tiered barrier in his path. He was also proud and sensitive. Therefore he couldn’t pretend that he wasn’t crippled, nor could he deceive himself that people were not repelled by his defect. Only once in all the years of trying not to watch him, I saw him pretend to himself and others that he wasn’t lame.
Coming home from school one day, I saw a dark car in our front yard. I rushed in to find a strange man and woman (Uncle Willie said later they were schoolteachers from Little Rock) drinking Dr Pepper in the cool of the Store. I sensed a wrongness around me, like an alarm clock that had gone off without being set.
I knew it couldn’t be the strangers. Not frequently, but often enough, travelers pulled off the main road to buy tobacco or soft drinks in the only Negro store in Stamps. When I looked at Uncle Willie, I knew what was pulling my mind’s coattails. He was standing erect behind the counter, not leaning forward or resting on the small shelf that had been built for him. Erect. His eyes seemed to hold me with a mixture of threats and appeal.
I dutifully greeted the strangers and roamed my eyes around for his walking stick. It was nowhere to be seen. He said, “Uh…this this…this…uh, my niece. She’s…uh…just come from school.” The to the couple – “You know…how, uh, children are…th-th-these days…they play all d-d-day at school and c-c-can’t wait to get home and pl-play some more.”
The people smiled, very friendly.
He added, “Go on out and pl-play, Sister.”
The lady laughed in a soft Arkansas voice and said, “Well, you know, Mr. Johnson, they say, you’re only a child once. Have you any children of your own?”
Uncle Willie looked at me with an impatience I hadn’t seen in his face even when he took thirty minutes to loop the laces over his high-topped shoes. “I thought I told you to go…go outside and play.”
Before I left I saw him lean back on the shelves of Garret Snuff, Prince Albert and Spark Plug chewing tobacco.
“No, ma-am…no ch-children and no wife.” He tried a laugh. “I have an old m-m-mother and my brother’s t-two children to l-look after.”
I didn’t mind his using us to make himself look good. In fact, I would have pretended to be his daughter if he wanted me to. Not only did I not feel any loyalty to my own father, I figured that if I had been Uncle Willie’s child, I would have received much better treatment.
The couple left after a few minutes, and from the back of the house I watched the red car scare chickens, raise dust and disappear toward Magnolia.
Uncle Willie was making his way down the long shadowed aisle between the shelves and the counter – hand over hand, like a man climbing out of a dream. I stayed quiet and watched him lurch from one side, bumping to the other, until he headed the coal-oil tank. He put his hand behind that dark recess and took his cane in the strong fist and shifted his weight on the wooden support. He thought he had pulled it off.
I’ll never know why it was important to him that the couple (he said later that he’d never seen them before) would take a picture of a whole Mr. Johnson back to Little Rock.
     He must have tired of being crippled, as prisoners tire of penitentiary bars and the guilty tire of blame. The high-topped shoes and the cane, his uncontrollable muscles and thick tongue, and the looks he suffered of either contempt or pity had simply worn him out, and for one afternoon, one part of an afternoon, he wanted no part of them.
     I understood and felt closer to him at that moment than ever before or since.”

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     Tears, in glasslike sheets, now soak the lower half of my face, pouring down my neck, filling the concave spot at the base of my throat, running down my chest as if I were a human downspout directing a flood. This…now this I understand. Only one who has experienced judgment and rejection could write in such a way that captures this specific and underrated need…the intense need to feel normal, if only for a moment. Only one who has known the shameful embarrassment of standing out the wrong way in a crowd, could appreciate the total joy of disappearing in blissful anonymity.
As the mother of an autistic child who is prone to violence, elopement, and very demonstrative public fits, I know all too well this craving to blend in, to feel normal, even if only briefly. During painfully public displays, I too, have frequently caught the eyes of others, reflecting like mirrors, either contempt or pity. After years and years of such reflections, I can no longer remember what I actually look like. Somewhere along the line, these gazes have become my truth. I have, at times, come to believe that I am the despised beast or the pitied creature… this, and nothing more.
And so I’ve manufactured ways to convince others of my normalcy, that in turn, normalcy might be reflected back to me; and so that I might believe, albeit momentarily, that I lead a normal life. Like Uncle Willie, I stand erect, hide the cane, disguise my limp, shoot daggers at anyone who might threaten to give away my secret. Normalcy has become both my shield and my crutch. If I look put together, no one will know that I am a mess. If my house is well-decorated, no one will know that I am crumbling inside.
But somewhere along the line, “normal” began to lose its appeal. It became common and dull. I looked with fresh eyes upon my “high-topped shoes and cane, my uncontrollable muscles and thick tongue,” and I held them with the tender love and compassion of a new mother. I allowed myself the freedom to cry the tears long dammed, and in reverential silence, bore witness to the shame and embarrassment so deeply buried. I gave myself permission to grieve the looks of contempt and pity, and the years of feeling anything but normal. I looked closely at the “me” who was hiding behind the protection and shelter of attempted normalcy and extended a soft hand to ease her transition into the light.
And as this timid part of “me” stepped forth in high-topped shoes, leaning heavily on a cane, thick-tongued and muscles yet uncontrolled, I grabbed her and pulled her close in an understanding embrace, and softly whispered in her ear, “I love your cane. I love your high-topped shoes. I love your thick tongue. I love your uncontrollable muscles. Look no longer into the eyes of others for feedback; from now on, look only within. Enter the world not as you wish to be, living the life you wish to be living; but enter as you are, living proudly the life you actually lead, back into the world as it actually is. Limp as you will, but limp with your head held high. For within that limp is contained all suffering, sorrow, madness, and despair. Within that limp is contained all things wild and uncontrollable, and within that limp is contained all love, joy, beauty, and depth of soul. Our humanity is held within each fragile and broken step we take; and so, do not hang your head in shame for that which is shared between all humans. Re-enter the world, still broken, still healing, and reclaim your rightful place within.”

Huge Small Victories

IMG_5358This weekend we went away for Grayson’s 13th birthday.  I definitely wasn’t in a celebratory mindset going into the weekend, as we had gone through multiple mind changes and so much deliberating about where to go, who should be included, where we would eat at, what we would eat, what the hotel would be like, etc…etc…etc…

The small farm-to-table restaurant was delicious, but did not have “normal food.” There were multiple breaks where Grayson left the restaurant to calm down, and several episodes of concealed (but silent) tears beneath his tightly drawn hoodie while hiding his head underneath the table. Although he tried bites of everything I asked him to, his dinner basically ended up being the “normal” gluten, dairy, egg-free cake that I made for him and brought from home.

The next morning at breakfast, he walked up to our server to ask for his drink by himself and she patted him on the shoulder as he turned to walk away. It was this small, but monumental event that changed my dutiful weekend into a celebratory one, filled with gratitude, amazement and a quiet but firmly substantial joy. 

Any parent that has a kiddo with sensory issues, knows that a touch from a stranger has the potential to turn into a full blown meltdown. But on October 27, 2018, Grayson’s 13th birthday, he didn’t flinch. He didn’t even seem to notice that a stranger had touched his shoulder. 

I was reminded of being in a similar hotel in Missouri approximately 11 years ago. Grayson was sick and on prednisone and a complete mess. He was red-faced, screaming, and asking for juice in the hotel restaurant. He then proceeded to hurl the full cup of juice all over the floor once he received it. This was the same weekend that he bit his new baby sister’s toes and made her bleed for no apparent reason at all.

I also remembered the first time I tried to take him swimming with his siblings at the community rec center. After his screaming and crying calmed down, he proceeded to sit on my lap and repetitively buckle and unbuckle this life jacket for the duration of our time there. 

But on his 13th birthday, we went to a hotel and a new restaurant, and a monstrous skatepark with huge ramps. He didn’t have a melt down.  He asked for help from strangers when he needed it.  He navigated his way through the skatepark while we sat and watched and he tried new things and worked through his fears with the skills and coping mechanisms that have been taught to him by angel-teachers through the years. 

On the morning of his birthday, he wrote me this note, using the voice-to-text skill that was again given to him by teachers as a gentle accommodation when writing by hand was hard for him…IMG_5346

For any parents struggling through a brutal introduction to life with a special needs kiddo…it can get better. The progress is slow and often imperceptible, but the payoffs are immeasurable. I have learned more from him than he could ever learn from me, and although I have questioned over and over if I am the right mom for him, I know beyond a shadow of a doubt that he is the right child for me.

“Love…bears all things, believes all things, hopes all things, endures all things.                     Love never fails.”                                                                                                                                    I Cor. 13:7

Unless a Grain of Wheat…

“My dad told me this once.  For a wheat seed to come fully into its own, it must become wholly undone.  The shell must break open, its insides must come out, and everything must change.  If you didn’t understand what life looks like, you might mistake it for complete destruction.”

-The Broken Way by Ann Voskamp-

 

I haven’t written lately because I haven’t had much to say.  And because some thoughts take longer to gestate than others.  Sometimes life has a way of washing over you like the ocean wave you didn’t see coming and suddenly,  you’re not thinking in words, you’re just trying to figure out which way is up and how to find your breath again.  Maybe it’s just me, but I feel like the older I get, the more I have to fight to hang on to hope and not give in to cynicism.  I have to work harder to see the glass half full instead of half empty.  I worry more than I ever have.  With the way the world is and a house full of present and upcoming teenagers, I recognize how much I stand to lose and how little control I possess.  And I just don’t have enough…enough patience, enough energy, enough love.  Many days feel like a battle, a monotonous drudgery at best.  And I become frustrated with myself that I can’t be more upbeat, less of a Debbie Downer, more like someone else, anyone else…

However, what I am being reminded of, is that there is no one who escapes life without struggle.  It is a part of the cycle of life.  Even if we lived in a utopian world, we would war within ourselves. But like a forgotten memory I am starting to recall a time when I knew better…a time when I was able to hold suffering in greater esteem.  Like birth pain, the struggle is more intense when you fight it, when you try to eradicate it.  I have forgotten that the best way to deal with pain is to breathe and lean into it, remembering that pain can give birth to breathtaking beauty.

I guess the last few months have left me feeling a bit like a wheat seed…like my outer layer has been has been smashed open, my insides spewed carelessly about.  And it kind of feels like complete destruction.  But perhaps, if I can learn to accept all of life with grace, humility and gratitude, this “destruction” can be the springboard into new life.  The Orthodox church has a saying, “Out of death springs life.”  They serve boiled wheat at funerals and memorial services to physically remind people that death is not the end.  It is a good reminder that sometimes we need to be “undone” before we can become “done.”  And like the smallest sprout, I feel hope start to grow again.  Although pain is not something I feel the need to seek out, I also can feel the frantic need to escape it seeping away.  As wind and water can erode granite, so can pain shape and wear away my rough edges.  Sometimes it feels like life cracks us wide open to pain.  But perhaps, it is cracking us open to healing, breaking us so that we can live life fully.  I hope and pray that my soul will settle in, lean in, and learn to graciously accept all that comes to me with peace of soul and the firm conviction that all is sent to me for my benefit.

“Unless a grain of wheat falls to the earth and dies…”

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Photo credit to my youngest daughter, Reagan

Common But Not Normal

A study was conducted in 1967 by a man named Martin Seligman.  In Part 1 of this study, three groups of dogs were placed in harnesses.  Group 1 dogs were briefly put in a harnesses and then released.  Groups 2 and 3 consisted of “yoked pairs”.  Dogs in Group 2 were given electric shocks at random times, which the dog could end by pressing a lever. The dogs in Group 3 were connected to a Group 2 dog and received a shock whenever Dog 2 received its shock.  However, the lever did not stop the shock for Dog 3.  Thus, for Group 3 dogs, the shock was “inescapable”.

All dogs were later placed in a small box in which they would receive the same shock.  Dogs from both groups 1 and 2 quickly jumped over a low partition to escape the shock.  However, the group 3 dogs simply laid down because they had learned that they could neither control nor end the shocks.

Our culture has become like the dogs of Group 3.  We are being shocked over and over and we too, have learned that the shocks are inescapable.  School shootings, bombings, acts of terror and suicides no longer shock us.  They have become common.  Social media and the internet have taken over our children’s lives and “nudes,” and pornography have become not only common, but acceptable and even praised.  Nothing is sacred.  Sex has become more prevalent than a deep conversation and any sense of modesty has long been vanquished by oversexed bodies splashed across any possible avenue.

However, what we seem to have forgotten is that there is a difference between common and normal.  Just because something happens with frequency does not mean that it is normal.  Prostitution is common but it is certainly not normal behavior.  We have forgotten that humans are created good, in the image of a Creator, and that it is the good that should be considered normative.  We, like Group 3 dogs, have laid down in the midst of the pain.  We have accepted the shocks as routine and no longer even look for a way out.  I must admit that I do not see any readily apparent escape route from that which is “common” in our world.  But I certainly refuse to look at any of the aforementioned issues as normal.

8cc0f5ce9f52d4c095ff419c2d25f05fThis age of tolerance which is good in many ways, has also caused us to turn a blind eye and accept much of what is unacceptable.   I realize that there is no way to stop the “shocks,” but we can at least jump over the partition of resignation and try to live a life that seeks to regains true normalcy and right thinking.   Although painful, I truly believe that it is better and more fully human to grieve and suffer through the shocks that to become desensitized and lay down in defeat.

The Nakedness of Suffering

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The Prodigal by Emile Salome

Our little town prematurely lost a teenager to suicide yesterday.  Everyone is feeling the weight of something like this happening so close to home.   And the fact of the matter is that there are no words to offer, nothing to be said that can alleviate or comfort anyone who is truly suffering.  Suffering is pure blackness.  It is a deep, dark pit with room for only one.  Meals can be made, words of consolation spoken, but at the end of the day, no one can help carry the pain.  No one can make time pass more quickly.  The only way through suffering is right down the middle…there is no bypass.

However for those standing on the outside looking in, tragedy and suffering act like a flash forest fire.  In an instant, everything superfluous gets burned away like dross.  We are stripped of all pretenses and become aware of our mortality, the shortness of life and what we are living for that truly matters. We become painstakingly aware of how our priorities have gotten off-kilter, how busyness is running our life, and how unappreciative we have become.  We see with clarity (if only temporarily) what is important in life.

In other countries where monasteries still play a major part in daily life, the first thing that a monk often does is to dig the grave that he will one day be buried in.  This is not due to a morbid fascination with death, but rather as a reminder to live well so as to be prepared for death. What would life look like if we could preserve the somberness, the softness and the vulnerability of suffering?  What if we could more consistently expose our weaknesses, our pain and our naked self without fear of condemnation?  What if we all dared to live a more authentic life?

There is nothing that will lighten the load of the tragedy that has taken place.  Nothing will comfort a grieving mother struggling to survive her first day without her son.  But perhaps through our response, we can redeem what has been lost and live longer in this gift that suffering has to offer.  Love and prayers for anyone who is suffering today…