because i get constantly get phone calls from school telling me he tried to stab a teacher with a pencil or that he tried to cut himself with a pencil sharpener blade or that he’s mad and can i calm him down. because he asks me so many questions and has so many issues and arguments that by 7:00 p.m. i can’t even remember what i did earlier on in the day. because he goes to school every day and his best friend is his teacher. because his remorse and sadness is sometimes too much for my weary heart. because every day i’m pretty sure God could have chosen someone better. because i spend all day frustrated and all night feeling guilty. because i’m at a loss for how to help my child. because in this captured moment, my heart melts, and i can set aside my fears and frustrations and simply see a human being…loving his cousin…needing desparately to be loved. and i’m pretty sure God gave him to me more for my sake than vice versa.
The 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…
I packed a lunch for my oldest son today. I literally can’t even remember the last lunch I packed for him. But today was his first day of work…a real job…manual labor. Packing that lunch and sending him off on his own made me realize that even though on one hand, I’m counting down the number of days until I can send him on his way, I’m still holding onto him tightly with the other. Even though he daily makes me want to scream, I don’t relish the thought of anyone in the “real world” doing the same. I’m not a hoverer or a very tender mom. I even feel a little calloused at time compared to other moms I know. But today was hard. It was hard to bite my tongue and not give advice. It was hard to not worry. It was hard turning him over to someone else who I know will (thankfully) make his life very physically challenging. Ultimately it was hard to let him go and recognize that this is how men like his father are made…through hard work and hard knocks, through trial and error, falling down and getting up. And none of that involves me holding his hand any more. Just like that, my time with him has shifted and it is time for me to step back and lead from behind instead of in front, to teach through listening and silence instead of repetition of words. Dropping him off, I felt the urge to reach out and grab his hand for old times’ sake, but refrained as common sense warned against it. So I just watched him walk away without looking back, swallowed a little lump in my throat and drove away, alone with my thoughts and empty handed. Who knew what a little sack lunch could do…
I’ve spent the last few months with blinders on…not the blindfold type of blinders that prevent you from seeing, but more like the type they put on horses to keep them focused on what is ahead of them. Life all of a sudden got really hard, and really good, and really busy, all at the same time. Kind of like a whirlwind introduction to teenagers, owning your own business, husband starting a business kind of boot camp. I laugh/cringe because this is just the way I operate…when things get hard, I get small and go inward. When I was delivering my first son, I basically kicked everyone out (and down the hall so I couldn’t even hear their voices), and my poor husband who took all those crazy classes with me didn’t even have a chance to put his newfound knowledge to work from his chair in the corner. I had to be fully alone and present with myself to focus and complete the task at hand. So I’ve spent the last few months in my “internal cocoon…” possibly socially isolated and emotionally withdrawn, although I don’t know how I appear to others. I haven’t been upset, I’ve just had to focus on getting through a challenging time and I do my best work alone.
I planned and pushed with fervency to wrap up as many jobs as possible so that I could be home with my kids for the summer. And then…it was summer. But to my complete surprise (and delight), the summer that normally devours me like a consuming tornado, has meandered in peacefully and silently, observed by the wonderful cessation of marking time and checking off to-do lists. I did reverse psychology on myself by getting so busy, that summer now seems slow in comparison (I must be smarter than I thought to be able to trick myself)! My oldest boys literally fish from sun-up to sun-down and my daughter is in Florida helping family. I have gone from having 5 seemingly co-dependent children to feeling like I only have 2! My days have transitioned from non-stop movement, to coffee (with refills!) on the patio in the company of a good book.
Throughout the course of the last few months, I am reminded that the struggles and busy-ness of life can function as a splinter. They can cause irritation and sometimes outright pain, but the second they are removed, the relief gives way to a newfound joy and appreciation. Although I am a regrettably slow learner, I am beginning to posses with certainty the belief that every stage of life is good (even the hard ones) and can offer new opportunities for gratitude. I have loved being busy and creative and working, but I also love letting my brain rest and “just” being a mom. We can go through life, constantly looking anxiously ahead to the next phase, or we can learn to suck the marrow out of the here and now. I have done plenty of looking ahead. I long to improve upon cherishing the present.
I am also (finally) beginning the grasp the importance of living seasonally. Earlier in life, I strived and worked incessantly. I felt lazy if I stopped to rest. Yet when we frantically press on and on (even in positive, fun times) without diversity or change in pace, we quickly run out of steam and live a dreary life of monotony. There must be times of ebb and flow, work and rest, tears and laughter, suffering and joy. I am learning to heed and embrace the literal seasons of nature for life cues…the long, slow spread of summer days, the solitude and silence of winter, the invigoration of spring and the calming crispness of fall. I’m even attempting to eat seasonal foods to provide for varying physical needs throughout the year. I’m trying to fight less against life, and instead receive with open hands of gratitude each twist of events that life presents. In doing so, I am learning to trust more deeply and authentically. Hindsight is always 20/20 and the longer I live, the more I can look back over the threads of time to see how my life is being expertly woven. I am seeing with greater clarity that I can breathe and lean fully into a life of trusting God, nature, and myself.
Living seasonally is nothing new. It is, in fact, ancient and old and wise. I, however am not. But perhaps through the symbiotic relationship of internal intuition and nature’s external prompting, I can settle in to a rhythmic sort of journey that will lead to a full, healthy and long existence. Life is hard. But it’s also really, really beautiful. I want to make the CHOICE to savor the sweetness of life, instead of dwelling on it’s bitter moments. Cheers to summer…
I have wanted to publish a book for a long time… not a book with words or even illustrations. Just a book of photographs. I would call it, “The Many Faces of Autism.” In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.
Most likely, I will never get around to a book of any sort. But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together. I have put together a mini sampling of photographs (click on photos for descriptions). Maybe this is something that only a mother can appreciate. I really don’t know.
What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders. I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side. I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc… I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection. This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens. I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang. I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.
However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH! In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was. These pictures serve as a sharp probe to remind me to count my blessings. Sadly, I have gotten lost in my own agitation and impatience. I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles. I have forgotten that he is funny and sweet and smart and creative! And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days). I have forgotten that it’s ok to laugh and smile. I have forgotten so, so much. I have a lot of remembering to do, and quite honestly, this overwhelms me. What if I cannot remember how to get back from where I came? Perhaps I have never even been “there” and need to forge a new path?? But then I think of Grayson and all that he has overcome and become, what we have become together. And I know that I can, and that I will, get where I need to go.
Maybe this is the beauty of photographs. They capture moments that trigger memories. And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up. So, without further ado, I am happy to share, “The Many Faces of Autism…”
(Grouped into the following categories…Obsessions, Firsts, Sad Times, Progressive Photograph-ability, Sleeping Anywhere, Crazy Moments, Precious Moments and my Favorite Notes from Grayson)
When my daughter was young we visited a women’s monastery. There was a young nun tending to the chickens. By all cultural standards, she was not pretty. Her face was broken out and scarred, she had thick glasses and braces. Her dark eyebrows formed a solid line, giving the appearance of a heavy, furrowed brow. However, she warmly invited my daughter to help feed the chickens. They chatted and laughed like old friends and when they were finished, my daughter casually remarked to me, “I hope I can be as pretty as she is some day.” Her statement stopped me dead in my tracks and pointed out my embarrassing and blaring inability to see true beauty.
I’ve been thinking a lot about beauty lately: not the Victoria’s Secret/Hollywood kind of beauty, or even the glowing sun setting over the mountains kind of beauty. I’ve been mulling over the idea of true beauty…soul beauty. This kind of beauty might outwardly appear revolting or undesirable at the very least. But for those that have the eyes to see, it is the purest form of beauty, ignorant of age, race, gender or religion.
I have a lifelong friend who is a cancer survivor. After she lost her hair and struggled and fought her way through chemo and radiation, her hair began to grow back. Naturally, she was self-conscious, but as she was bathing one night, her little girl petted her head and offhandedly commented how much she loved her mom’s cute, tiny baby hairs. Those little stubbles of hair growing out of a bald head were beautiful. My dear friend in a weakened state of vulnerability was beautiful. It just took someone with the eyes to see.
I have another friend who while walking toward an elevator got stuck behind a slow moving mother and her child with special needs. The child walked abnormally, shuffle-shuffle-clap, shuffle-shuffle-clap. The mother was trying to move her child along to allow people through and apologetically glanced back at my friend. Before the mother had time to offer an apology, my friend enthusiastically exclaimed, “Look at your beautiful child! He’s clapping to the rhythm of his steps perfectly!” The shocked mother admitted that this was indeed what he was doing. A child finding his own rhythm was beautiful. A mother trying to be sensitive not only to her child, but to those around her was beautiful. It just took someone with the eyes to see.
In each of these cases, our well-intentioned society might try to “fix” that which is “ugly”…make-up and a wax job for the sweet nun, a wig for my friend with cancer, therapy for the child walking irregularly…thus allegedly beautifying each scenario. But in doing so, we dictate what we think beauty SHOULD look like and lose sight of what true beauty actually is. True beauty functions like a magnet. Those who are unable to perceive it will be repelled and perhaps even repulsed. But for those that have eyes to see, true beauty will attract, draw in, and connect people on a soul level.
I realize that I severely lack the eyes to see. I feel sorrowful when I recognize how much of my own soul is uncultivated, wild, ugly even. But in order to avoid hypocrisy, I must practice seeing the beauty in my own soul. I must nourish what is good within me instead of dwelling on that which is lacking. And like a novice photographer sharpening his eye for what will make a good photograph, perhaps my vision will become clearer, less muddled by the confines of society, more free to see what is true and pure, more grounded in that which is real. May we all have the clarity of soul to see the true beauty that is found in the “ugly”.
There is a strange new man living in my house. He is tall, dark and handsome. Apparently, he is also extremely smart. He’s always brandishing this alleged intelligence and for some odd reason, constantly feels the need to remind me of his self-proclaimed autonomy. But it’s ironic…although he can drive a car, he can’t make a sandwich. And even though he’s able to decode insane chemistry equations, he looks at me like I’m speaking in Charlie Brown’s teacher’s voice if I ask him to clean his room. This same “man,” who I am barely allowed to touch, also crawls into my room at 4 a.m. asking me if I have any medicine for his “tummy-ache.”
This paradoxical way of living is making me a little insane. If I relied on his feedback at all, I might be a bit schizophrenic and (only) slightly insulted. I have been told I’m a dictator, a crazy woman, completely irrational, and even a crack-addict! The unfortunate thing is, I’m not even sure that I completely disagree. Sometimes I feel like the wicked queen, wanting to wave my wand and banish him from my kingdom forever. Other days I feel psychotic, like I could literally strangle the life out of him that I imparted 16 years ago. At times, I cry, mourning the loss of childhood and sweet innocence. And on rare occasions, my sanity returns to me (if only briefly) and I am able to look into his eyes and see my child. I see his fears and struggles, his pain and insecurities, his dreams and failures. In an instant, he becomes a mirror to me and I am laid bare before my fears and struggles, my pain and insecurities, my dreams and failures. I am amazed and humbled as I realize that even though it seems that he is fighting against me, in reality, we are fighting together…fighting for his personhood, his character, his soul.
This stage of his life can only be likened to a second birth. Many days, I feel as though it is one big, fat, long contraction…sweating and toiling, but painful and very seemingly unproductive. But this time, I am not laboring to bring forth a child, I am laboring with my whole heart and soul to bring forth a fully grown man: a man who is loving and appreciative, respectful and kind, hard working and moral. This is not an easy task in today’s world. So to get through the labor pains, I keep before me the hopeful glimpses into his heart…images of him on the river, hunting with his dad and brother, the amazing photographs he takes, his hidden self-reflective side…and I find my hope that one day, the hard work will be over and standing before me will be an exceptional human being. Lord willing, we will be able to look back and laugh together at these days and what he has put us through.
And then…when time has passed and he’s grown and married and fathers my first sweet grand-baby, I will pull up my chair and popcorn and eagerly await for the arrival of my dear friend Karma!
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.”
Last night, my 11-year-old niece told me about a birthday party she had gone to. Their morning activities included waking up to a morning smoothie bar and a hired yoga instructor. Am I the only one who happens to thinks this is INSANE?! What happened to the birthday parties where you play pin-the-tail-on-the-donkey, eat some cake and call it a day? Our American culture has become obsessed with productivity, efficiency, and one-upping last year’s Pinterest birthday party. The dog days of summer have been replaced with a steady stream of camps, organized play groups, and a landslide of sporting events. Stress related illnesses have reached an all time high. What is happening to us?!
Now with five children, I could never convincingly claim that my life is anything but frantic, chaotic and constant. But I can genuinely assert that as a direct rebellion against the busyness, I have intentionally reclaimed the lost art of sitting. I have created a space for this sitting right by the fireplace with my favorite chair that will soon have an indelible imprint of my backside. I have a small garden stool for a table used exclusively for my coffee. And my kids know that when I am sitting there, I am very unlikely to jump up and do much of anything for them. They are, in fact accustomed to me calling out for the nearest child to “give me 20!” (which in layman’s terms means a coffee reheat). This time for me always involves a little reading, a little contemplating, and a lot of just staring out the window. It is my balking recoil against time, chaos and the never ending to-do list.
From an architectural standpoint, it is interesting to observe how even our homes exhibit our cultural priorities. Backyard patios, as opposed to front porches, tend to be the focus of most outdoor living spaces. Porches represent the concept of sitting, doing little to nothing, just being. Whereas, patios tend to emphasize entertaining, playing, and doing. Interesting enough, these are the top five results that pop up when the word “sitting,” is googled: “Too much sitting linked to heart disease, diabetes and premature death…Sitting is bad for your health…Sitting will kill you, even if you exercise…Is sitting a lethal activity…Sit less, live longer.” Even alleged inspirational quotes about sitting carry a negative connotation. References are made to bench warmers, laziness, loneliness and passivity. Sitting has gotten a bad rap.
Even so, I choose to sit. I choose to sit and slow down time. I choose to be unproductive for 5 minutes, an hour, a day so that I might be happy and rested and mentally clear. I choose to not be constantly efficient so that I might have energy for my kids and husband. And I choose the pin-the-tail-on the donkey birthday parties so that my children will not constantly expect bigger and better for the remainder of their lives.