My son repeats himself always. He is on the spectrum so we expect this. But these days I have been working to channel all his repetition into something useful. Enter writing letters. Today he woke up saying the same things he wanted yesterday, his toys for Christmas. I told him to take a piece of paper and write a letter to me indicating what he wants. He did. Here is his letter. We still have work to do, but I think I am on to something. Keep writing letters, even from your children to you.
P.s. he is also reading to his baby brother. His first time doing so. This one brought a huge smile to heart.
My son attends a school that was severely damaged by the floods that came through Saint Louis in July. Their entire basement was gutted and all the rooms they use for their sensory activities were destroyed. We started school a week later than most and had to readjust everything with classrooms now in a different location. Change is scary for us. Transitions too and the beginning of the school year is always fraught with anxiety for adjustment and routine and everything else that comes with living life on the spectrum.
Yesterday I picked my son up from school later than usual and I was struck by how calm he was. The old him would have been crying and freaking out wondering if I was coming to pick him up even if I was 5 minutes late. He hates not going home when everyone else is going home. Seeing him, calm made me feel reassured that we are going to have a great school year after all, floods, transitions and all. It’s these little things that matter for me these days. That and seeing the love the students gave back to their teachers for everything thing they have been doing for them especially now with all the change.
I am a proud mother of a child on the spectrum and seeing their humanity on display even as chalk drawing for their teachers car parking lot as a way to thank them for all they do, is my keep for today. Floods may come. Change, transitions, tossing out the old, adjusting to the new may coming along. But in all things, keep the love for the little things in mind, like chalk drawings to say thank you to others.
Lives healed by the sound of music. And lives restored in the middle of meltdowns, are dancing to their own tunes now. Becoming too, in tune with all the noise, and sorrow, pulling us down, sign of the times and full moon, all the good news, for lives lived beyond these times. I am on a quest to make sense of minds not typical but typical in their own way. And music is my key entry point. I don’t have it all figured out yet, but in the middle of another meltdown today with my son, in the middle of what seemed to be an endless display of a mind in disarray, music helped to restore all we couldn’t. It’s this gift and power, I choose to keep today. The never ending sound of music for healing.
I think about the day he was kicked out of school often. They rise up during moments like today, rise up like the moon, to remind me of how far we have come. The journey has indeed been long. Here was a boy, kicked out of his first school experience only after two days. Here is a mother, who cried alone in her car with him, wondering what our life will be come. Here is a boy who brought the words autism to my soul. Here is a boy for whom all sorts of remedy became all we knew. Here is a boy who barely spoke a word at three. Here is a boy who only pointed at things he wanted. Here is a boy for when words came repeated them often so his brain would never forget. Here is a boy who still repeats words so his brain remembers. Here is a boy for whom hand gestures are like silent friends. Here is a boy for whom friends are everyone in the universe and more. Here is a boy for whom bubbles and air in his being run free never forgetting their roots. Here too is a boy who memorized the entire mass, once words that seemed distant turned to dreams of tears, of joy, at least for me and him and everyone who remembers the day we knew we were destined for greatness, yet blessed with difference on our side.
There are still miles ahead to go. Still things I worry about like words inappropriate he says out loud not knowing the weight they carry. Strangers, all sorts, he greets and speaks to on the road, expecting they are as innocent and brilliant as he is. He is truly innocent and brilliant and unfamiliar with the ways of the world, still that I fear for what the future holds. I fear but choose this moment to remind myself to look at the bright side always. That’s what the universe said to me, as we played at a park the next day after being kicked out of school. That’s what the universe still says to me, as we all stand by his side celebrating his first holy communion. Now son, flesh of my flesh, now that you receive the body and blood of the one who first loved you, know that all of life runs through your veins. You silence or laughter or difference or joy isn’t weakness but for his glory and he will want you to look at the bright side always. If all this defines you, if you still live for the universe free, then we are open always to this bright side of you, this power within you.
I am re-reading Toni Cade Bambara’s The Salteaters, and I am struck by this line in the book ‘the source of health is never outside.’ The book itself is always worth a read but the idea of all you need for health nestled within you has always made me feel whole. Two days ago, my first son and I were visiting his pediatrician and as always we marveled at how far we have come with being on the spectrum. We know we still have so many miles to go, but this idea of all we need for him being within us helped me put so much in perspective. See we often take huge leaps forward, often expect things to seem better, meltdowns dissipate and the brain seems to function as if all was well. Then just as soon as we bend a curve, we are ushered right back to the start. His doctor reminded me that in those moments, all we need are already within reach. She reminded me that when we have meltdowns that seem so out of control, those like our recent experience at the planetarium, a chewable childrens motrim will do. It can help the body quickly reset as my son makes sense of all that is happening to him. I was stunned. Of course don’t use it on an empty stomach she cautioned, but whenever you take him out and feel like he may start to stim or have a serious meltdown, a chewable Motrim may help to calm him down. I went straight to Walmart and bought 3 bottles. She also mentioned the need to have meltdown packs, almost like a first aid kit for moments like the Planetarium when we anticipate the end just may not work as well as we expect it to end. I said this summer is going to be like that. I also noted that I dread the summer for him. Nothing seems to work out well and he always seem to have meltdowns when ever he has to end anything. I share all this to say we are looking within ourselves these days for the source of all that would help us cope with being on the spectrum. Only time will tell but I am learning with each passing day that the source of our health, is already within our reach
Everyone that loves you know the outbursts is not in your voice.
Hands flaring. Nose glaring. The outbursts are not by choice.
Pitch getting loud, redirection leading to nowhere.
These outbursts are only noise.
For a mind overflowing with visions of sunsets, and Orion and dreams of a little star that could, even as tears gently roll.
In the end, there are lessons with each noise, lessons though not by choice, and lessons through your voice.
And they all remind us of choirs of angels singing at a place called Gethsemane.
We went to the Live Sky Tonight show at the Planetarium yesterday. It was a first for us. When we visit the Planetarium we usually watch the show the Little Star that Could. This time, I decided to try something different. I completely forgot my first son only loves the same thing. He is also obsessed with the solar systems and I thought I was doing something great to expand his knowledge base. Well I thought wrong. The show was great. He loved every moment of it. It was the end. He kept on asking so when are we going to watch the movie Little Star that Could. I told him we didn’t come for it plus besides it happens only in the morning and we’ll it would have to be another day. That didn’t go well with him and right there in the middle of the room, a full melt down began.
We pleaded and pleaded but his mind went somewhere else. Completely unable to process anything we were saying. So I did the best I could, with baby in my arm, picked him up, and proceeded to walk him out of the planetarium. There were stares. The kind that makes you want to go somewhere and hide and wait till the world is asleep to come out. My son kept raising his voice as if he would get help from his over stimulation. We kept walking what seemed liked forever until we got outside and straight to the car. I felt really terrible for my other kids because they wanted to see other parts of the planetarium. But having a meltdown meant that we had to all go home.
Keeping this here as a reminder that having a child on the spectrum will push you out of your limits. We don’t have meltdowns as much as we used to. In fact during the show I remembered when we first came to the Planetarium and how I vowed we would never be back. I watched in amazement as my son sat still and took it all in. There is growth through the spectrum and we see it for ourselves every single day. But there are still moments and days where nothing seems to work and it’s like the beginning where nothing seems to make sense. We know these days are part of his stories and that he is even sorry, in fact always sorry for causing such a meltdown. He says so himself, apologizing for what he can’t seem to control. That’s why I will always be grateful for him. For the grace he teaches even under enormous stress. My only hope is not for this to pass, but more for us to remember that lessons of a meltdown with children on the spectrum. The grace too that follows after so much stress. We keep learning from him every day.
I am raising a boy whose on the spectrum. He is becoming more than I ever dreamed of. More than I ever hoped for. More than I ever thought he would become. He is also doing it his way. Sometimes his ways are out of sight. We are all astound. Here is a boy that barely said a word at 3. A boy for whom meltdowns were all he knew. Until things changed. I still pinch myself as I have not really taken the time to truly uncover all we did in the beginning. And we did a lot.
If you told me back then that we would get to this place one day, I would not believe you. He was kicked out of his first school at age 2 after attending for 2 days. The odds were completely against us. My own child was kicked out of school before he could say his name. I still remember crying by myself that day wondering where to begin. I remember calling a helpline for special needs kids in Georgia that day too. The person on the other line had to have been an Angel. After briefly chatting with her calming me down, she asked what we both did for a living. I said I was a researcher and dad was a resident in neurology. Her response, I wouldn’t worry to much about your son then. I asked why. She said because we would both use our gifts for him and that’s more than most kids on the spectrum would have. Looking back, she was right. When we learnt through research that a drug for cancer had speech properties, my son was on it. When he had a series of nonstop laughing episode, and my husband remembered something about the brain and laughter, my son’s brain was observed via EEG which uncovered mini seizures while he slept. Our gifts were indeed useful for him.
Today at age seven, I keep pinching myself every time I have a heart to heart with him or watch as he reads a book. These days Dog man’s series are all he knows. All he is obsessed about. That he reads makes my heart swell. His ways are still forming, still making sense of this world, still stimming, still repeating things that make no sense, still involves play that makes no sense too, but all of it, all his ways are perfect by design. These days, I would not trade any of this for any sense of normalcy. Not with him. He is perfect by design and even when he tries, all his ways are good. It’s the smallest things with him, the hugs, the meltdowns too, all of them combine, remind me just how blessed we are as a family. To be in the midst of a child on the spectrum is a blessing. One that I am extremely thankful I got to witness with my own eyes. Today he is in a Christmas play in school. The boy who barely spoke at 2, was kicked out of school at 2 as well, is in a play at school at 7. His ways remain out of sight with great days and days with good tries. The sky is not a limit and I remain hopeful for what the future will bring his way.
My son has begun to leave traces of his drawings and coloring everywhere. He loves drawing these days because Mo Whilems taught him how to draw a pigeon trying to drive a bus. He also loves coloring because alpha blocks are zesty and full of colors. They taught him how to color within alphabet known as blocks. It’s as if he has begun an endless hunger for art. But it’s his art assignment at school that has me mesmerized this morning. Coloring or drawing didn’t come naturally or easy to him. Here is a boy for whom coloring between the lines or within spaces was a chore. There were assignments full of coloring that he never really completed, never really understood, and saw as a waste of time, if as things to assign. The colors he placed rather haphazardly disturbed nothing, moved nothing too. From then on, coloring became a chore, another thing to do, another thing, often described as boring, this thing that we bore into him.
Until this summer, our summer of light, our summer full of discoveries. It was this summer, one with no therapy, that my son discerned for himself, the intimate sustained surrender to art for art’s sake. In the absence of demands, through frames that are separate, yet particular, a pigeon, alphablocks, and now the Virgin Mary, this thing that was once boring, complements his minds’s many dazzling ways, deepening an enduring desire to do more, be more, involved yes, but consumed more with what he creates with his own hands. A pigeon, alpha blocks, even the Virgin Mary all pry open the pages of his intriguing mind. His art, has become now, more important, than his silence, more important than days where his mind frays or melts down. This is a keep worth reliving over and over again, one where his art is becoming life, one frame at a time.
I asked him, why he even painted Virgin Mary brown. Most depictions are of a fair lady, fairer than the white of snow. His is only 7 years and I am fascinated with how he depicts humanity. His response as clear as a sunny day: because she is supposed to be brown. I don’t take this response lightly. His mind is a puzzling masterpiece to all of us that know him intimately. To see this journey, to watch as he follows his path, through art, through colors, through people, is to see possibilities with minds on a spectrum. All of us that are typical have so much to learn from children on the spectrum, whether from their thoughts on pigeons, or alpha blocks or Virgin Mary. Don’t wait for society to tell us how they should act or speak or even react to ways that are untypical to a typical mind. Each of us are destined to use the skills we have to meet minds that dream of days were dreaming is life’s streaming, this beaming in need of more esteeming. I am learning each day that those of us with the privilege to see how the brain works differently are the lucky ones. How each coloring, each drawing becomes a thing worth keeping is my prayer for you, for me, a desire for what to come when we all keep coloring. Keep it, because it’s what you, we, are all supposed to do.
There is nothing like introducing a child to Shel Silverstine. ‘A light in the attic’ being one of my favorite of his. Of course ‘where the sidewalk ends’ is equally fantastic. Then don’t let me get started on ‘the giving tree.’ Everything he wrote and illustrated is truly worthy of praises. Not because he was gifted with his craft, but more so because of his rare combination of poems and drawings for dreamers and those who love to imagine, believers and those who like to believe differently, thinkers and those who do so differently, dream, believe and think, different. To introduce him to my son was a delight. To watch the light in his attic flicker on was joy. We spent the entire summer drawing, all sorts of pigeon particularly from Mo Willems ‘Don’t let the Pigeon drive the bus.’ Discovering drawing with cartoons was one of the best thing we did we all summer with him. I never knew he loved to draw until this summer thanks to Mo Willems and his brilliantly simple tales of a pigeon.
It allowed him to focus, as in not for minutes but hours even on pigeons, drawing and illustrating books and books of it in other versions like The Pigeon gets a hotdog. He was not only drawing, but committing words to memory, reciting them all to himself in ways that make sense to his mind. Doing so, allowed him to temper his meltdowns. Some drawings will be poor, full of mistakes too. Some will make you mad, disappointed or frustrated with yourself too. But the ones that stand the test of time. The ones that defy the odd and leap through the pages to tell your story as clearly as you want are the ones full of joy, full of delight, full of all his light.
Now enter Shel Silverstine. Before there was Mo and all his pigeon tales, Silverstine shined brightly. A light in the attic is a classic of his. Short and sweet for minds quirky but full of treats. And my son’s mind is superb, with Silverstine’s work a gentle treat, so soft but full of power like the sounds of a drumbeat. Where he ends, whether with the bridge that only my son can take across his mind past moonlit woods on a magic carpet through the air or past whistling and whirling winds from skies so grey, is where my som begins. The journey is endless with Shel Silverstine and I can wait to watch as he journeys through it all. There is a light in the attic of his mind. Though we are all outside, we keep looking as flickers with his light.
On nights we make believe, I tell the story of the old lady who lived in a shoe. It’s a short story and my kids seem to like my many take on the lady. Like why a shoe, or why so many children? Why even feed them one by one? Why didn’t she even know what to do?
These questions often come to mind the moment our storytelling begins. We never find a definite answer but I like the creative process of thinking through in depth, more details about the old lady and her shoe. My son said she loved the shoe that’s why they lived in it. I asked, can you imagine what it would be like to live in a shoe? How tight such a space maybe? How big might the shoe even be for all of us to wiggle and snuggle ourselves in? And what about the old lady, why did she do all she could to still feed her children?
Stories like the old lady personify why motherhood is full of moments that linger on in my mind long after events go by. Moment that are not only full of struggles like those of the old lady but also full of strength and survival especially with our children. Moments like yesterday.
On the plane back to Saint Louis yesterday, I reminisced about the first days of traveling on airplanes with my son on the spectrum. They were horrible and forever etched in my mind as one of the many things not to do. Yet we did them because we had to travel. One moment I recalled was a trip from Indianapolis to Augusta, Ga via Atlanta. We had to get on two planes. My son cried from the beginning to the end of the trip. He was only 2 years old. I was like the old woman in the shoe. I never knew what to do in those days. Nothing worked. Not IPads, not snacks of all kinds. Nothing seemed to work. My son cried and couldn’t whip him soundly to sleep.
But yesterday, as I watched my son, now seven years old, totally mesmerized by his growth, I felt like the old woman in the shoe. His ways are truly full of moments that linger on long after they occur. You have to literally take them all one by one, whip them soundly into unforgettable moments, like the old lady in the shoe. The layers to his being, are literally being peeled away, one by one and I am learning what to do these days with ease.
I asked if he was having a great time. He said yes. I asked what was his favorite part of the trip. Being on the airplane, he said. Here was a boy who cried and cried in the beginning. We still have miles and miles to go. But I am learning to love watching him grow day by day.