So in the heart of every mother lives the barely contained beat of a primal animal’s heartbeat. It rears up and roars to life when she fears or senses her child being judged, criticized unfairly, or hurt by another. It is an animal that is always there, always ready, often sleeping below the surface, but always there.
One ear is always cocked and waiting, and at any moment, this animal inside of her could lunge. I know this. I experienced it with my typically developed daughter. My job then was to quiet this animal to a degree we could all live with, and I did manage it fairly successfully.
This animal inside on my second journey through motherhood is the same one. It’s just an animal that has been fed upon the experience of having raised one kid into adulthood. It is an animal who has seen the cruelty displayed to her ordinary as milk child. She has seen the meanness and the unfairness poured out onto a child the world sees as “typical”, she has nursed wounds, and fought tender battles for her first masterpiece. She fought and continues to fight these battles both for the first child and now for the second one, and draws on the experiences she gained in the first go round.
So it isn’t unusual with my second child that I would be aware of the wildness inside of me. It’s just a more brittle animal who has an extra added spice flavored out of the fear of the unknown of what may await her very special child. Because the animal knows how even when everything has gone right, the world is cruel–people aren’t always kind and the mother in me has seen the viciousness. The worry is intense for my special child. The worry is an animal and in me it is a wolf pacing on a chain. It’s just bigger, stronger, much more at the ready these days— and it rarely ever sleeps anymore.
The wolf hears young children mocking her special baby. She hears the cruel thickened flat tones other kids use to mock the unique speech patterns that her child struggles so hard to produce. The very sounds this mother has come to hear as precious audible bits of sweetened bread dropping from the heavens above, are what they so coolly mock.
These dismissive kid’s who are culling out what they perceive as the weaker members from their group don’t know about the hours upon hours I’ve spent gently coaxing his “funny” speech out. They don’t know about the multiple therapies and family time. Nor do they care at all about all those moments I’ve had interrupted when I’ve stopped everything to insist on the sounds I knew my child could create, if I but slowed it down and insisted.
Special needs mother’s stop in public, they get down to a child’s level, and they don’t care what goes on around them or who is watching. The world blurs behind, her child his word, his point, his gesture, his eye contact, his best efforts are the only vision she can see. She sees his beautiful face and the artistry of her child, and she is watching raptly to see the child’s mouth form the approximations of the words she know he holds. Or her gaze is intently watching as his fingers make the signs, or as her little girl is painstakingly making the gesture a mother is patiently waiting, or she watches as that same child first begins pointing correctly to choice board selection–whatever it is for that special needs child– the wolf inside of every mother stands right beside her. You can see it there sometimes, if you look hard enough in moments like that, in a silvery flash like a shadow–the wolf is there, alert and watching right next to the mother.
That is what we special needs mothers do. Every opportunity becomes one for work on some hard fought for skill, for us our largest battle is the patient coaxing of his speech, that particular profoundly mock worthy, garbled up way of speech– that I lean my whole body in to hear. Every single thing becomes an opportunity for building up skills. Red Popsicle or blue? Say the word. How many cookies? One or two, say it, then show me, and then you may have the cookies. Say the word. Good job!
These very sounds, these very flattened and curled up tones that other children who glitter and dazzle with ease as language glides from their tongue, dare to mock, are in fact the very sounds that give me reason to push on. They are the sounds that bring me to tears sometimes in the night when I worry for this very special child. This is when the wolf on her chain paces the most restlessly. The words my son spends, become my tears of joy. They are the tears that heal the other gaps. To hear another child mock, yanks the chain, sharp and hard on the wolf who is already so very tight strung and restless. But, in children you can forgive the cruelty a little easier. Children are yet unformed. They are little sociopaths, like it or not, until they are taught the rules of society. They run on pure instinct when left to themselves, I can forgive that. The wolf, finds it difficult, but I can understand.
When an adult says something stupid and insensitive that wolf just raises up her head inside and keens. It cries and cries, and then a kind of blood lust sets over her. The wolf almost can’t see through the pain. When an adult makes comments like “Well, little Bobby is normal so you probably can’t relate to normal boy behaviors” or “Well, my son can’t get away with that, he can learn” or “It’s not like he can learn a thing like that, I read about Autism so I know that is something he won’t learn, to expect it is to be in a total state of denial” or “He’s just so wound up, it’s insane. I don’t know how you can stand it!” All of the cutting words roll up into a tight hot ball, and you take them in, mostly you can swallow them down as long as it is one by one and over time. You think it can’t be worse, you’ve heard it all, and then comes the day when someone actually says to you “He’s not ever going to live on his own, go to college, or drive or car, or marry anybody. So why do you invest so much time on therapy?” When these things are said there is a swift and sudden dying off of ever feeling that you will ever be able to connect with another soul in regards to your child, without pain.
Just as hurtful is when you are disappeared. When you are dismissed entirely by the PTA mom’s. When you just aren’t seen anymore. Or when dismissive words are said to distinguish your child as less than another child as if to say, “Don’t dare compare your fucked up kid to mine! My child and your child are not anywhere near the same!” it wounds deeply. When you aren’t allowed join in a conversation to say that you are experiencing similar joys, expectations, hopes, or a depth of love that every parent feels without being reminded that your child is disabled or will achieve less. When you stand on the outside of a by a wall of moms who wait by the same tree at the end of the school day to pick up their kids, but not from Miss Katie’s class like your kid is, and you are overtly ignored. You have been disappeared and you stand pinching yourself on the edge of the circle of moms who shut you out. You pinch yourself to make sure you are even real. You wonder is it that you have nothing of value to add just because your child has disability? Is that how you become an invisible mother? Then the pain slides into your skin and lodges there, and your heart hurts to simply even maintain its beat. The wolf cries blot out everything. You don’t dare free it. If you did you’d tear into the world teeth first and cry and cry and never ever stop.
How does the wolf express itself? Well, in high blood pressure. In gray hairs. In weight gain. In a resting pulse rate of 103. In early expression of auto immune disease. In insomnia that sweeps through and screams into the night. In exhaustion upon rising so profound the first thought to enter a head is “Oh, no, I can’t—I can’t get out of bed”. In depression that takes years to untangle and to distinguish from the exhaustion and the insomnia. The quiet insidious depression that rattles around and scratches in the silence of your loss of voice, like tumbleweed picking up speed on some abandoned street. In tears. These are tears that don’t heal and don’t soothe, they are tears that just spill a little bit of poison out, but there are wells of it inside so deep down that it may never be fully tapped. The wolf expresses itself in the feeling that the pressure of your anxious skitter scatter rhythm heart beat is going to jiggle your eyeball out of its socket. In the feeling that your head is doing everything it can to actually escape your neck. The wolf shows in stress to the marriage. In collapsing in a heap at the end of the day, too exhausted to keep up on your relationships, other children, your chores—or anything outside of breathing in and out, in a total inability at times to lift a finger on anything external, at all. In binge eating. In snapping arguments with “safe” people. In incredibly elevated levels of cortisol. In doctor appointments where the “I’m okay! I’m great, look at me—I’m fine! Just fine!!” mask slips and the body cries out “BULLSHIT” in every cell that it can. In prescriptions that try to shore up the destruction that the yawping of the wolf is having on your body. The wolf reigns by crushing down the host. The host is you.
So here I am. Sopping up the mess, left over of a period spent too engaged outside of self for too long. I ignored myself again. Somehow all the physical things stacked up. I swore in the beginning I would be good to myself. I said I’d pay attention to the things of self. I’d feed my soul. But, I forgot about the cunning of the pacing animal inside of me. I forgot the way it would be on guard even when I was not. This crying wolf—this song under the moon took over everything.
I am back to the starting block again. Diet. Exercise. Meditation. Physically shutting out the world for prescribed amounts of time each day. Drowning myself under the gentle arms of the sweeping trees in the yard. Noticing and inhaling the scent of the sweet peas. Reminding myself that I am okay, that he is okay, and that we are all okay. Loving myself first. Checking my ass in the mirror, and assuring myself that my immanent doom anxiety is unfounded. There, in fact, rarely is ever even a single alligator hanging from my butt. They aren’t there! Girl, fight or flight is out of place, here. You’re dealing with shoulda, coulda, woulda, what if, why me, and then what’s—-these shouldn’t be fight or flight things. These are not even realized things. They certainly aren’t in the grasp of today. What an elevated response to have over such a near –total dearth of alligators swinging from my ass. That only leaves peace in inhabiting the moments of now. Noticing the good. Breathing. I’m remembering again. I’ve put self back on the list, and while it’s nowhere near perfect, I’ve made progress here.
It takes nothing to slap my world back to the place where my spirit paces again. A visit from a distant friend who is meant to be core. But, who time had wisely removed for the most part. A stream of precision aimed strikes and an insanely cold and a pit viper level of meanness in a barrage of words. Watching a typical child display with ease the many skills that my child struggles with, and might never attain to any noticeable degree, that this other child was born able to do. Watching this adult, a person who professes love for me, reassure herself, that at least here, she excels. As if this visit may have been to simply reassure herself at my- and my special child’s expense. Her words were like spears and each one landed. Every ugly one of them all at once, all jumbled up together, and then spit into my face.
It was so bad I had to send up an SOS to other friends I’ve met along the way and surround myself with special needs mother’s who circled by my side. These women gladly met up and kept up a buffer and watched over us all protectively. I checked myself with them. Their horror stricken faces said it all. It was like a condensed can of every horrid thought to pass a lip alphabet-dumb soup with meat balls! Every lurid overblown fear I’ve ever in my life had about how the world will treat my beautiful baby boy when I am gone, fully realized at once in the words of one individual, in ONE conversation. A person who says they LOVE me. A cold lumpy soup dumped directly on my head. Suddenly, in a way I’ve not done in years, my vision narrowed to a tunnel pin prick and I roared up. I hurled epithets and stood my ground. I placed my body in front of my child and I shut her down completely, shaming her where she stood. I decided then and there that if God puts space between me and another soul, I won’t force us together out of any obligation familial, friendship, or otherwise. I cut her away and I showed her the door.
The release of my hot words pricking a bubble festering blister of oozing stuff that needed to run, and run, until it was clean. I felt bad later for this lapse back into fight and flight. I was astonished at how balled up my fists were and how slicing sharp like razors my words were. My wolf was ripping in teeth first, and it was earned! My defense of my special child blotted out everything. The moon ran silvery and suddenly streaked slashed darkly with red, I relished the scent of her shame! My rage bubbled in my blood, and for the first time in ages, I was unrestrained and it felt so good! I was drunk with a sudden vicious blood lust. My skin sang with it.
The release, was profound. But, within moments I recognized I’d have reflection to make, a side of the street that would be mine and mine alone to see to tidying, if I chose to grow and evolve as a person. The only person here I’ve power over is, me. In any disturbance the issue is me. At least, I am the one constant in things that upset me. I always seem to find myself standing there. I’ll have a living amends and a karmic debt to pay. I’m open to it presenting itself. I’ve reflected and I am comfortable in what I can do from here. Also, there is a freedom. I can head back out and aim for more grace the next time. But, in this case I popped a festering wound that needed healing–an ancient wound drawn so long ago bubbled up in the familiar feel of someone who was supposed to love me but who hurts instead. Love and hurt, such familiar roots. I am not proud of my wolf snapping attack, but I don’t regret it either. I can make a lesson of it. But, overall–it was just my turn on the downward swing, and it cleared up my heart, either way.
This was a swift well earned response but sometimes the cruelty comes at me or my son over a slow period of time in different times and places, and they can come from completely different sources, and then standing in line at a Wal-Mart a total stranger gets a full blast over their head as response to a rudeness. They will probably never understand why I lunged at them, they know nothing of the accumulation of slights I’ve withstood before they so carelessly bumped against a wound. They look at my child and think their eyes are clearly surveying the full story of what is going on. They think they understand at a glance what they are seeing. Their self righteous assurance and unsolicited advice or disdainful look will suddenly bait the wolf. They will regret having assessed my son or me so casually, so– incompletely. Sometimes a snap and whistle will sound in my head and the wolf is called. I will sight them and engage them in their rudeness. Suddenly, they get a face full of every other stacked up insult and rudeness I’ve deflected from me or my child that has built up over time. Sometimes it’ll fall together with perfect grace. In a civilized precision snap, I’ll say what needs to be said, politely, but pointedly. Sometimes not so much. Life is a narrow beam for all of us. The trick is balance. Trying to find balance and hold it for awhile. Sometimes I’ll have it. Lots of time I won’t. That’s just how it is.
How can I quiet the wolf? The answer is that I cannot. All I can do is hunker down and realize that there but by the grace of God, go I. I am so much more sensitive than ever I have been, and others do benefit. I no longer have to sling pain every single time I feel it to try to assuage a pain handed me. I can choose kindness and vow to try harder to walk softly in this world.
I can also share what I’ve learned to those coming into special needs. I can say to mother’s of the newly diagnosed to get hold of your excesses now, because the stress here can flourish in the dark of your exhaustion, if it does it can throw you into a tail spin. Sometimes, you’ll find yourself frantically pouring energy out without returning the investment to yourself. You’ll sell your peace of mind hoping for a miracle sometimes, even things you swore you’d never buy into, you’ll find yourself quietly researching…considering…You’ll end up engaged in the fighting of the system, the disorder, the school, the doctors, the moments of despair—the diagnosis itself. Sometimes you’ll realize you’ve missed the goodness in front of your face while engaging in the fight.
You’ll find yourself in flight sometimes. You’ll just be checked out—working by route. Because it’s just too much to engage or reach out. At times, every ugly word you’ve ever thought about yourself and others will play on tape inside your head and it will resonate with your heartbeat and eat at you in the hours you should be sleeping. Those voices will drown out even the kindness of the very “real” voices of people who love you, outside of your head. All of your fears about the ways you might fail, or how other’s might see you as less than, how you aren’t doing it right, or about how you aren’t enough–YOU aren’t ENOUGH– will sneak in. But, so often it’s cunning, like a gentle slow blossoming clinging mold—cottony and comfortable and seemingly not a threat at all. It’s progress feels so slow, so familiar, you’ll say “Yes, I’ll get to it” –but in that meantime it’ll get to you.
If you eat, drink, shop, isolate, fight, run away, scream, manipulate, blame, or fade into depression as your usual coping mechanisms—you’d best see to it now. Because that may have sufficiently quieted the wolf until now, but, those things will not work in the land of special needs. The energy is too frenzied and the stress to ramped up here. The responsibilities to pointed. Reflect upon how you cope in the usual, and expect it to be magnified, both the good parts and the bad—equally will magnify a thousand fold. See to the things you want to keep, and the things you will need to let go of, and see to them early—Find yourself a few truly good friends. Find one’s you can really trust and get them to do periodic checks when your hair is on fire and the stress is cooking under your feet. Get at least one good friend who can spot the REAL alligators from the IMAGINED ones hanging from your ass. I can do that, share what I’ve learned for other’s to either find meaningful or not.
I can remember to call the wolf to heel. Remind myself to call her off, when she is not needed. I can return to the glider swing. I can enjoy the sight of my child who I’d die to protect. I can remind myself and say out loud again into the world–If I am in a denial about what my son might accomplish, it is my very job as his mother to do so! Otherwise why, why—why would I even bother to push? Why not leave him to playing with the shafts of sunlight that fall in through the window blinds spinning in a corner all to himself? Wouldn’t that be easier? But, in ways you might discount, my son has defied so many things that I was assured he’d never be able to do. I can cry out to the heavens and to anyone who will hear, that if YOU aren’t God, then you don’t have any idea what my son’s destiny is to be either! You know statistics, you know odds, you know about people in stories, you know what you choose to believe, but you don’t know what God has in store for my son. I can also remind anyone listening, that we all get to choose the parts of ourselves we wish to feed. Some people are just mean. That’s it, that’s their sole contribution. Their greatest creativity is in being mean—some will die that way. I can’t change it.
Me? I am working toward compassion, love, and light. I’d rather be that than to have the ability to rightly call a person full of shit, or guess odds based on something as small and meaningless as statistics and black and white words and margins in a generic text book prognosis. I’d rather see a miracle than to see myself be right at someone else’s expense. I’d rather be kind. I can live out amends for my mistakes, and I can allow you to make yours. I can do all of that, and then I can enjoy the view from the center of my yard, and I can view with a softer perspective my child. I can marvel at his very special brand of beauty. I can advocate peace and acceptance. I can teach goodwill. I can point out the beauties, and dismiss the cruelties.
Sometimes I walk it with grace, other times I wind up ass over head in a spectacularly jumbled up heap of good intentions gone SO exquisitely wrong. Sometimes, I’ll stand in a stream of gutter words, like a three year old child in need of a nap with a stunningly vulgar vocabulary—sometimes I’ll receive it and sometimes I’ll release it—I’ve a right to my successes and my failures, as much as anyone else. Both have value. I can take it, mark it, and resolve to grow from it. I can recognize the presence of the wolf inside of me. I can accept it being there.
The wolf? She is mine forever. Mine to honor and protect and use as she serves. She is not ever going to go anywhere. We just have to find the balance here and recognize the limits and the values we hold together. I can’t destroy her. After all we are one and the same being. A mother’s heart and a wolf. There’s nothing special to see here, it’s been going on since time began. Nicholas and I, we’re going to make our way and we’re going to do it with this gorgeous powerful animal always by our side.