Last year at about this very time Nicholas began his first day of special needs Kindergarten. I’d already seen him through nearly three full years of special needs preschool, so in some ways I‘d developed some Teflon properties. But, not in every way.
Last year I wasn’t sure of a lot. I wasn’t sure if I wanted to fight his placement in fully enclosed special education. I knew I could. I’d already spoken with a special needs educational advocate and a special needs education lawyer. I had spent phone time with TASK an advocacy group and learned a lot about all the things I could do. In some ways Nicholas was a good candidate for this fight. He is not a behavioral kid and I will die convinced of his deep and quiet intelligence. I know it is there, it is just locked inside right now. I see so much in him that many people either fail to see or simply choose to dismiss as a possibility because it is easier than trying to reach it. At this time last year I’d tucked all of those possibilities and all of that fight into my back pocket. I was waiting to see what I wanted to do with all of my knowledge.
I am grateful now for the weariness that prevented me from immediate action. I’d like to tell you it had been measured prudence that made me pause before jumping in fight first, but if truth is to be told, it was not any nobility or brilliance or really even anything OF me at all. It was weariness that made me pause. In that indrawn breath of my inaction I met his teacher and gave her a shot. I had not been impressed with her at his intake IEP. She was too quick and seemingly self-assured for my liking. Yet, those very quick things about her intrigued me even as they grated a little bit. I watched her in his class time irritated and curious while I was immobile in my holding pattern. I was amazed to feel all of my fight swirl out and away on a sudden current, it was completely against my will. It wasn’t slow or gentle. It was there, all my glorious fight, and then on the next wave it was gone. I watched her work so beautifully with my son. I was unprepared to like or accept her or anything she had to offer. The sudden prick and burst of my need to lock horns with her was swift.
It was good and it was bad. It was good that Nicholas was in a good place. Not the greatest realization that Nicholas belonged in fully enclosed special education. Nicholas had a lot of impairments that were in his way. He was academically challenged. He was cognitively stunted. He was socially still a long way off the mark. He was and is full of every possibility, but academically, cognitively, and socially speaking–my son was disabled quite visibly at that time.
My fight completely bubbled out of me. Not the fight that I still engage in every single day–believing in his ability and his worth and his right to be given the best tools and all of the best opportunities towards developing his best version of self. Not those necessary fights. I mean the fight for fighting sake that happens. In the moments I watched my son find a place that fit in the bright elementary special education classroom that fight was suddenly gone. I didn’t see him being dismissed or ignored.
Without that sense of bristling mommy wolf fur standing on end and that all-consuming bloodlust in my desire to dive teeth first tearing into everything that had ever gone wrong, there was only fighting him, or fighting myself, or somehow finding some form of acceptance for his gentle sweet place in life. It is again only with a safe removed distance that I am allowed to see the ways I slid into a slow declining quietness and adjustment to my spirit. It was a well-earned period of depression as I adjusted.
In that sudden ease of tension and in all of that shrieking silence I began to feel the wear and tear on my body from the last years that I had taken. I could suddenly physically feel my body crying against my neglect of self. My body gave a rather indelicate small collapse. It wasn’t even a spectacular collapse, it was just enough to get my attention. Boring, but noticeable. Suddenly I’d fallen into expression of stress related issues and a new auto immune disorder. Everything including my skin began to sing with awareness. That was also depressing. It is depressing to me when I become so typical! A special needs mother with extra weight (AfreakingGAIN!) and slightly high blood pressure, a stupid rabbit V. wolf pulse—put simply–stress illness. Typical and boring! I’m truly not sure which offends me more.
Letting Nicholas go into the hands of others gave me a chance to heal myself, but first there was acknowledging that I wasn’t alright. There was facing the fact that I had been afraid, then mad, then REALLY mad, and then I’d tried to hide and spackle back together all of those ugly bits. All of it however, was really fear. Fear always oozes out of me shouting from behind the faces of different masks.
My fight protected me from this reckoning. Fight protects a lot of Autism moms from such reckoning. I’ve been blessed to share myself with a couple of great Autism women and moms who are a couple years ahead of me. Some aren’t aware of how closely I’ve watched them, and others have been more than aware and have been selfless in the sharing of their experience with me. They’ve been happy to share a part of the road with me. They have all been the most amazingly strong people who’ve helped me define so much about who I’d like to be and some have taught me by showing me a lot about things I’d rather not be. I’ve gained so much from all of them.
But, boiled down it is easiest to say, I’ve also watched so many mothers fight. FIGHT! Only to find out they have a fifteen year old child who is still Autistic. A young adult, a middle aged adult—a very precious loved child who still wakes up every day Autistic. All that therapy! All that law! All that diet! All that fight, FIGHT, fiiiiiiiight—and a teenager or young adult who is still Autistic. Again I am not speaking about dedicated and consistent measured effort as being wasted! We still do hours of meaningful therapy and lots of effort is made, I don’t mean that.
I mean the hand to hand combat with the disorder. The loss of self to the battle with a child’s disability and the defensive clawing to aim change toward future outcomes. The total mind and body engagement in changing the face of the disorder such as can be found in the search for a cure that drives some people to the point of considering industrial bleach as an option or magic spoons or traveling to Tibet to kiss a horse. There’s a lot of fighting a person can do even on less dramatic fronts. Autism is a swift and total taker of energy if you let it. The fight can suddenly overtake all moderation and steal time to the point that a woman (often it is a mother) one day looks up and realizes there was a lot more internet searching and driving to specialists and weighing out supplements and fighting over IEP minutia and small print than there was time spent at the park. Their collapses tend to be much more striking and spectacular than mine.
At this time last year I was in the process of assimilating the weight of the fighting I’d seen. I didn’t know it then, but that is what I was doing. I was rolling around the idea of fighting harder or finding more things to enjoy? What? What mattered to me? Seeing a great teacher take in my kid gave me my chance and I could drop my guard a little bit.
With my fight gone and my health precariously related to the ways in which I had ignored myself, I gave myself permission to indulge in a little physical and emotional slide. It was important because only by allowing that landslide to rumble could I heal from it. A tiny sorrow born on pain and then a degree of acceptance was finally made. There was quite a natural period of something akin to grief in the adjusting.
Nicholas—ahhh he simply blossomed. In his very gentle way he is happy. He grew into a new confidence. So did I over time. I am strong in my ability to let him go a little bit and to take responsibility for my own health. I’ve been physically thinner before, but I don’t believe I’ve ever been so fit or health conscious, so connected to prayer and peace. So drawn to quiet and things that re build rather than take from me. I find peace in sweat of exercise and effort of my heart and in returning to things of myself, and in trusting my beloved Nicholas into other hands. I am at such a nice separate, and yet, inclusive peace.
I got a beautiful little gift today. I think gifts come to me when I am so in tuned to the natural groove and pull of my soul that I am not looking for them at all. Today it became apparent to me how blessed I’ve been in a very surprising visual way. A sight of something toppled me back to last year as I stood looking today at Nicholas. I felt the tug of new muscle in the softness of my smile as I stood watching him.
It is only now that I can even begin to tell you about the full circle tree. Because it is just today that one full rotation of a new circle has come complete.
Last year as I dropped Nicholas off at his first day of elementary school I quickly learned that all of his classmates and the teachers and paras all meet up by a big tree at the corner of the school office. They wait there for all the students arriving by bus and when the bell rings they all shuffle off together as a class. It’s the United Nations of disability there and there are flags from every place in the faces of each of those children who happily wander off. They all arrive back out under the shade of this tree at the end of the day. It’s not just Nicholas’ class older kids in special education meet at the tree every morning and are picked up there every afternoon too.
On the first day last year at pick up time there was a child who was eleven or twelve off to the side of the group. He was not engaging with anybody. In fact he was circling the trunk of that papery barked tree. Periodically he’d stop and jump or jerk with his whole body and let out a screech or two and then slowly begin his deeply concentrated druid- like circles again. A staff member would occasionally call him by name and attempt to return him to the group, but that child always returned to the tree. I stood waiting there for Nicholas to be escorted out at the end of the day and I watched this boy with a fresh sort of sorrow. It just struck me how clearly marked this boy was with his Autism. Off by himself engaged with nobody, simply circling that tree. I thought of Nicholas and I shuddered inside. I don’t want that, I thought! I don’t want it to be sad like that.
The full circle tree was just the elementary school’s visual for me. The preschool had a moment for me too. Then, it had been the summer school program. I had stood waiting for Nicholas watching a child being led to a classroom on, for lack of a better word, a lead. I watched his aide gently redirecting him again and again trying to shuffle him to the classroom. The child squealed and batted out a couple times and I stood for long moments watching that slow painful progress. By the time I’d gotten to the car there was nothing to do but lay my face against my steering wheel and cry. I didn’t want that for Nicholas either!
Knowing more about Autism now I understand that the child way back then probably had tactile sensitivity and the “lead” was to keep him from requiring touch. But, back then—oh—the tears I cried so hotly in my car, completely overcome with a fresh fear and grief, and yes, a burning shimmering form of barely banked anger too. My Welcome to Holland shock was not anywhere near even touched. Not even the barest scratches had been made upon its surface yet.
Fast forward three years to elementary school. I watched that boy under the tree for much of last year. Always he returned to that tree and danced his slow circles and jumped his jumps and jerked his arms like they were gloriously bedazzled in invisible but brightly feathered plumage and with a flick of his wrist they were somehow transformed into wings. It was as if he could fly up to Heaven at any time, and perhaps it was only our expectations and the gentle tree that tethered him to earth, after all. I no longer thought much about this boy after a while, but I still saw him.
These first three days of this school year I’ve watched an interesting thing. I actually became aware even at the end of last year. I noticed Nicholas circling that very tree. Off and away from the group, off to himself he circles the tree. If you are close enough you can hear him humming gently as he slowly goes. Around and around he circles with his hands rubbing the papery bark of the tree. All the noise and bright parrot and monkey calls in a schoolyard filled with the happy sounds of childhood chatter blend together and blur as I watch him go. He loses himself there. And—yet…I am not sad.
In a full circle twist, I am not sad. I see the beauty in the way he moves. I understand the way he is saving himself up for the immense workload he is about to undertake in the next six hours. We ask him to kick up to the surface of the deceptively placid appearing barrier of whatever so thinly separates us for hours at school every day. The six hours he must attend, engage, socialize, and reciprocate must feel so foreign and all-encompassing to him. Nicholas loves school and his friends, but I am more and more aware of how alien this world must feel to him. I am sorrowful sometimes for the ways he has to try and my heart grieves for the separateness he clearly sometimes feels. His inability to communicate in the same language or by the same sensory and social rules as his peers and everyone else, in essence must feel as if he is dropped every single day at 8:22 a.m. headlong into Russia, Outer Mongolia, Egypt, and Mars—and then the rotation begins on our whims, every new day.
He can never quite catch up and his guide books are never quite right. We keep moving the boundaries on him. Our boundaries are our expectations of him, and his brain is different. The world must be a crazy kaleidoscope out of focus picture sometimes for him. I see him move to the sidelines once in a while. I think a six year old is too young to have so much asked of him sometimes. And yet, most every day he is good natured enough to try. Yes, I’d probably gravitate away for a few gathering moments too! I’d be drawn to that tree too. That tree, the slow circling of such neat and clear patterns and steps and the humming that must center him back into himself must be a soothing ritual of gathering himself up. Or at the very least the tree asks nothing at all of him. I can understand the pull of that.
It is so beautiful! It is the most absorbing thing I’ve ever seen. I am honored by a divine grace to have picked it up at all. Today I watched as a woman who I’ve not noticed before stood absorbed in Nicholas for a few moments. I believe she is new to the school and her child is just starting out. I watched her watch Nicholas. She stood transfixed, perhaps, just like I had last year. Her pose seemed reluctantly drawn to the movements of my son. I could see the gentle softness of the downward curve to her lips. I saw the way she didn’t turn away from Nicholas. She sighed just before she turned to go.
I wondered if she doesn’t want it to be like that? I wonder if she is standing exactly where I have stood? I wonder if the sight of my son circling that tree epitomizes something she has come to recognize as a circle she too will have to make again and again? I can’t know of course, but something in my spirit cried out and leaned in with a feeling of empathy to something so possibly kindred. I certainly know she watched Nicholas with intensity, whatever her thoughts were. I moved past her and smiled at her.
There is nothing sad about Nicholas. He is a devilish bright little kid. When he is sure of himself he is amazeballs and cheese! He makes me laugh. He makes anyone who stops for a moment or two to see him believe in bigger things. He is touched by a very special light that ignites his soul. He has the gentlest heart I’ve ever heard beat! There is a grand purpose for Nicholas. I feel sorry for people who cannot yet see it, the way I learned to somehow, over some unremarkable slow passage of time– to see beauty with the first little boy who circled the tree. I don’t know when a boy circling a tree engaged in himself became not so sad but instead a dance of some exotically plumed creature touched by a beautiful light who is perhaps re-gathering himself, but who certainly has every right to not explain to the likes of me why he moves so beautifully around a tree. I don’t know when it happened, but–the gift is that– it did.
I’ve come so far in other ways too. It is okay to not have to fight. Not fight for Nicholas, or with him, or against Autism, or even to fight for him by battling against myself. It isn’t giving up. Accepting that—for today—we are both exactly where we are meant to be. Offering the best of the tools I can, today, but accepting our place is a peaceful thing. I was blessed with a glimpse of where I’ve come from and to see just a tiny vision of how it blends with today. It’s a really good place to be.
I’ll wind up out of whack again. Remember life’s little grinning paradox? Nothing remains the same. Yet we get to return again and again to the same old familiar well worn places to learn or ignore each lesson again and again. Fighting is one of my most remedial lessons. I am not alone in this, here in special needs land, however. The thing of “fighting” is sneaky. Most of us want to be on the same playing field as Temple Grandin’s mother, at least to some degree. We want that glorious end story! To that end there’s a million and one sleek snake oil salesmen and a ton of “fads” that come in and out of vogue in Autism care waiting to entice us into jiggling open our purses. They bark from every shadow at us.
It’s hard to maintain a balance between what bridges the gap between a help and what becomes a sucker of time and energy and a stealer of joy and ends up becoming simply an additional source of stress for me. For Nicholas. For all of us. I can move along fine for awhile but that old seductive dance often lures me back. Often I find my fists balled up. It creeps up again and again. Its subtle as it draws a person in. We’re told that to be a “warrior mom” we must fight. Sometimes those thoughts land. They will again. But–for NOW in this moment in today I am enjoying a quiet place.
Sometimes I’ll be less than Zen. In fact is much more likely that I’ll often be a right and proper freaky fried hot mess. I am grace on fire! Have we discussed how often I wind up in an ass over feet spectacular heap of—oh damn? Even when it is like that, I am comfortable today that it all has meaning, even the ugly spots. All the places I’ve been have been integral to the journey. We all have a right to the space we occupy. How cool is that? The journey is round and round. It’s not forward or back. It’s not good or bad, or even a very clear win or lose. It’s not up or down. Lessons are opportunities that are presented again and again. It’s God’s cosmic IEP! It’s a lovely balance in that circle. Today, I am alright and I am exactly where I am meant to be. So is Nicholas.
In fact under the arms of that gentle shade tree I’ve come full circle again. There are so many circles that I will complete. Some of them are painful, but all are growth opportunities and if I am willing to pause in between and breathe and then just allow them to be– I can see the path of all those steps we’ve made. I can be gentle in my understanding that it is a circle of opportunity for us all. I can see a beautiful side of Nicholas and not have to understand. I can enjoy watching him be exactly who he is, unfettered by me or anybody, safe there under the shade of a tree. I can be happy and not sad to see him move so beautifully, so whole and so right and so comfortable in his own skin. I can be glad to meet him there exactly as he is under the wide open arms of the full circle tree.