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.”

A Summer Tornado

downloadThe end of summer feels a bit like wandering through the aftermath of a natural disaster.  I mentally move from room to room, assessing all the damage that has been done after several months at home with five kids, mainly my autistic son.  A broken window in the basement…door jamb plates that have been sneakily unscrewed at some point to avoid “room time…” a broken lamp and glass candlestick in the storage that I’ve known about, but somehow, just can’t conjure up the energy to clean…broken glass tabletops from angry, slamming spoons as well as from the time he was “pretending” to throw a chair and slipped…broken doors and doorknobs (oh Lord, so many broken doors)…a garage door that won’t shut, a front door that won’t open…railings that have been ripped out of place…the list goes on and on…

And then there’s the internal inventory…everything I set out to do this summer, everything I hoped to be and do and just ran out of steam. Everywhere I look seems to be a reminder of my failures and shortcomings.  And it feels a bit overwhelming…a lot overwhelming, actually.  I basically want to pack it all up (or just leave it all behind) and move to Montana (or anywhere).

And tomorrow, he starts middle school.  My stomach hasn’t stopped churning since I realized how close the start of school was (a combination of sheer dread and simultaneous elation)!  I remember leaving him at preschool…I guess it was more like peeling him off of me and sprinting out the door…and this kind of feels like that.  I am always afraid of him feeling afraid, of him feeling lonely, of someone being unkind, of me not being there for him.

But in the daily midst of struggling to just breathe and not suffocate, a bright thought sneaks into my darkness.  My 16 year old son, who was standing on a teetering precipice, spent the summer fishing instead of partying, all day every day.  He came home happy at night and actually talked to us and laughed with us!  My daughter spent 5 weeks in Florida helping family take care of a household with 4 small children.  Last night, I sat up until midnight with my 13 year old son and 3 of his precious, giggling, hilarious friends as they tried to learn how to use chopsticks (and or course broke more glass in the process)!  My youngest daughter is still asleep with a friend in a fort they worked until midnight…and not a single electronic device was involved!!

I woke up this morning reminded (yet again) of the messiness and complexity of life.  I constantly feel like my life is either on the brink of a tragic catastrophe or sheer paradise.  They are both true, I think.  Every breath holds within it the potential for suffering and misfortune, as well as peace and prosperity.  But sometimes it is not so obvious which is which. Most days, I am incapable of discerning what events will lead to my downfall or my salvation. It all blends together in one chaotic, jumbled mess.  Perhaps it is all one in the same.  At times, I can’t see through my tears.  But on any given day, they might be tears of heartache or tears of laughter.  Life seems to be one huge contradiction.  It is concurrently chaotic and monotonous, sorrowful and joyful, dreadful and wonderful.

It’s pretty hard to hide and yet at the same time, hard to admit…I’m a mess, my kids are a mess, my home is a mess.  But I guess it’s the mess that makes us human, that makes us vulnerable and that humbles and refines us.  I can’t say that I always appreciate it, that I don’t at times try to close my eyes and make it all disappear.  But on better days, I can at least accept this beautiful mess called life…

 

 

 

 

Autism, Judgment, and Love

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“Levitating” with a shovel implanted in the ground

I am the mother of an 11-year-old boy with a diagnosis of autism and a love for magic, levitating, yo-yo’s and recreating things he’s seen on YouTube.  He makes me laugh and cry harder than any of my other children.  Over the years I have grown pretty thick skin.  I rarely notice the stares if he loses it in public.  I am mostly used to the judgment.  I have been told by a stranger at Costco that I should have left him at home when he pushed his sister.  He has been nudged by the boot of an unknown man and told to “mind his mother” when he was pitching a fit on the floor.  When I locked him out of my car in the parking lot of a mall because he was hitting me, the woman in the car facing mine took off her sunglasses to glare and shake her head at me (I wanted to crawl into a hole and disappear).  To be certain, I am not impervious to these occurrences, but they have become a part of life to some degree; my new normal if you will.

But what I cannot handle, what absolutely dissolves my resolve and shakes me to the core is when someone shows me kindness.  Heaven help us all if a stranger stops and asks if I’m alright or if I need help, or even worse, tells me I’m doing a wonderful job as a mother.  I might actually drop and shed every last tear in my body.  I can be strong and keep a stiff upper lip.  But look at me with concern on a bad day and ask how I’m doing, and you might literally witness my complete and utter undoing.

There are many things in life that I do not know.  But the one thing I do know is this: impulsive judgment without understanding gives rise to anger and bitterness.  It builds walls and leads to retreat or retaliation.  Love however, can undo and rebuild in one swift movement.  It can pluck you out of your small world and drop you into the foreign land of another’s struggles.  In a world confused by what color lives matter,  who can use what restroom, and which politician will cause the end of the world, if we do not respond with love, we will leave only emotional casualties behind.

Consequently, when we find ourselves on the receiving end of unfair judgment, we are left with a choice. We can wallow in the pain, playing the part of a victim.  Or we can choose to release ourselves, and with gratitude, turn our focus to the goodness surrounding us.  We will see what we choose to see.  Even though I have, at times, been enraged by people’s cruelty, it cannot compare with the love that has humbled me over and over again.  I have seen my son bite his teacher and draw blood, and then watched them walk hand and hand into school.  Friends and family have searched for and then cooked meals that are free of the fifty billion allergens we avoid, just to give me a night off of cooking, or to make sure that my son has a special treat at family dinners.  Teachers at his school have given up their personal time so that my husband and I could get away for our anniversary.  I have received phone calls from school because one of my other children had unbeknownst to me, taken the needs of a physically disabled student upon himself, and was carrying the child’s backpack to class every day.  My dad regularly drives an hour each way to take my son to a movie so that I might enjoy a quiet morning in church alone. Finally and perhaps most importantly, I have been on the receiving end of the unconditional love of my son.  No matter how many times I lose it, or become irritable with him, or feel like I’m going insane, he tells me every night at bedtime without fail, “Good night, I love you.  You’re special to me.  I think about you in my heart.  I think about you in my peace.”  I don’t really even know what it means, but it’s beautiful.  Some nights, I brush over it, because I’m just so excited for him to go to bed.  But when I stop and think about it, I can’t really think of anything nicer that anyone has ever said to me.  And once again, I am undone.  Love has overcome the anger and frustration of the day and released me one more time from the snare of judgment (me toward myself this time).  I settle in for the night and fall asleep with the words of Mother Teresa in my heart, “Not all of us can do great things.  But we can do small things with great love.”