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.

At 2, just after being kicked out of his first school.
Today, at his first holy communion.
Happy First Holy Communion. Fun fact: He thought he was becoming a Priest with his outfit. It really made his day thinking he was becoming like them. Only time will tell.

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.

This beautiful image from Lucille Clifton Everett Anderson series helps to personify what a meltdown often looks like.

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.

Pigeon from Don’t Let the Pigeon Drive the Bus.
Alpha block

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.

Virgin Mary

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.

We went by water yesterday. My kids and I. Not a big water park as before. But a small indoor pool perfect for cooling down the rays of heat of a truly scorching summer.

I didn’t want to go. I still remember the meltdown from our prior excursion to a water park. I didn’t even bring out my green swimming suit. No need to swim when your mind and eyes need to stay alert. And I was prepared to stay alert this time around.

I spoke to my son with a gentle ease. I do it all the time too, eyes to eyes. He seemed to listen with ease, talking and repeating word for word like a gentle breeze. I told him we would go by water again and this time we will have a great time. I reminded him of the need to not cry. I took him to the side to quell all the noise I knew his brain was destined to make. Spoke power to him to overcome them, to enjoy being one with water, to look forward to the experience coming to an end too. I did all this because I didn’t want to end as we did the last time. I didn’t want eyes on us. I certainly didn’t want a meltdown like before. I still feel tense whenever I recall the experience. I also know he doesn’t mean it hence why I would still take him by water even though I know it may end badly.

We got dressed. He wore his favorite blue swimming shirt and pants. The words fortnite in a camo print were written on his shirt. Praying to not rewrite history still kept me alert. I watched as he gently made sense of all the water around him. I did so watching his other siblings too, better than any hawk would too. His sister went up and down a large yellow water slide. His little brother found joy up and down a red water slide. My son stood next to the water dripping down in a progressive style next to the water slide. The twirling water from little spouts seemed to make him joyful and surprisingly gentle.

He seemed happy to just watch water gush out of the spouts gently. Watching him watch water kept me in a state so gentle. Honestly words failed me. Here I was expecting the worse given our prior attempts at a water park that left me so drained. But he once more proved why children on the spectrum are truly divine by design. By the end of the day, approximately 20 minutes to my timed departure, when I said it’s time to leave, he asked if he could have one more turn on the silde. His response kept me stunned that all I could do was nod my head.

I watched as he went up and down the slide one more time, watched his face light up with joy one more time, saw as he came out of the pool with his brother and sister one more time, all with a gentle ease that kept me stunned for a long time. Here is truly my son, whose spectrum is perfect and by God’s design. I cannot fully make sense of the changes we go through with him all the time. But I am grateful to see the boy his is growing up to be one step at a time. Keep these gentle ease for kids like him. Great days are full of joy, full of ease, truly gentle, and all by design.

As a flower, Hibiscus ranges from white, to pink, to orange and red. It’s beauty greets your eyes and leads you on a journey where your heart is fully fed. The diversity of its shape, it’s size and it’s color, even it’s shrub is outstanding, full of brilliance, full of elegance. My hands touched a hibiscus this week. It was at the swimming lodge by our home, where my children attended a week-long swimming camp. It sent the petals on it way, whirling through the air, these tiny specks bobbing, all through the air. A brilliance seemed to surround the flowers, all around them beamed, a great brilliance. It’s power I noticed, strikes you in the heart and in the head. For one brief moment, you too are like the Hibiscus, and brilliance fills your being wholly.

I imagine this is what great days in the summer are like with children. Brilliance like pink hibiscus flowers that, wholly fill your being with a joy, you may never have imagined, joy that you hope to capture, even if fleeting, for even now, you maybe wondering, how joy became your portion, with the demands of your children occupying every single minute of your day. As hibiscus flowers open up, as their brilliance radiates in full bloom, even if for a moment, you will feel joy, screaming through your pores, even when you lay helpless wondering how the summer days will last. My motto, take it one moment at a time. Summer days as a mom are supposed to be brilliant and they rarely are. The demands of your children are supposed to end once you address their needs, but they rarely do. The hot air is supposed, to want them to stay cool, even lay low if they can, but they never do. Yet through it all, how we mothers find ways to reach and teach, listen and lead the scenes, all of them from summer camps to summer schools, even for brief rare moments, leaves me thankful for the blessed assurance of Hibiscus.

I knew that summer days following homeschooling and a pandemic would be tough. What I didn’t plan for was to be sent home early after only day 2 of swimming camp with my middle child. I knew that anything with water would be a problem for him. But I also wanted him to learn to manage his meltdowns whenever he goes by water. Day 1 involved crying at the end of the day, because I didn’t bring a change of clothes. I was following the camps instructions and hoped for a better Day 2. It was disastrous. I wondered why I kept insisting that my son learnt in this way. The camp counselors called an hour into camp and noted he was crying. He wanted to go on the slides. His shorts had rivets. Campers with rivets are not allowed on slides. My son had a meltdown. They asked what to do. I said try saying Dad was on his way to get him. They did. He cried louder. I eventually came and got him. This was only Day 2. These meltdowns are dreadful. Especially when his minds cannot get past the denied access for example. It’s denial makes him cry non-stop, repeating the same phrases over and over again. Like ‘no slides.’ ‘But why.’ Nothing seems to end it. The anguish subsides for a moment when you remove him for the place causing the meltdown. He may still sob. But eventually, it comes to an end, and slowly his brilliance returns and surround his being. Day 3, armed with new swimwear and a change of clothes, meant that my son had a brilliant day. The utter brillance in his demeanor, left the counselors stunned. It was like night and day. We know, always that when the conditions are right, his being would be brilliant. The conditions were right the rest of the week. By Friday, the last day of swimming camp, he got an award for the individual with the most fun. His sister got one too for the best participation. She was instrumental with helping to ensure he had a great time at the swimming camp.

Looking back, the brilliance of this week were like those that surround hibiscus flowers I noticed at the swimming lodge. A brilliance seemed to surround us this past week with swimming, all around a great brilliance. From the meltdowns, to the upside down nature of mothering on the spectrum, the diversity of nurturing from moments to moments, keeps my head and heart fully fed with joy. Keep the brilliance of Hibiscus for mother’s during summer days.

My son loves to go to water parks. It always ends in disaster. I also seem to forget this happens all the time. Today maybe the last time. We planned to go to a water park awhile back. Today was the day. The kids have been waiting for it’s arrival. It began like most days, very uneventful, but full of excitement. They all got up early. Took their bath without prompting. Got dressed, ate breakfast. I should have known that the ease with which the day began was premonition of sorts. We got to the water park. Things started to go out of control the moment they saw all the rides. My son on the spectrum became another being. Gone were his stimming or anything that makes him recognizable as being on the spectrum. There are no signs, no visible scars or disabilities to say out loud, treat him with care at the park. So naturally everything went out the door with him.

He was cutting lines, jumping from one water park slide to another, all with pure excitement that almost all children at the park had. I knew I was in for trouble the moment I said, lunch. Any other day, my son would be ready for lunch. Ready even to tell you what he wanted. I also have code words for leaving parks. For example at the Zoo, we almost always end the day with trains and then ice-cream. It works all the time. Maybe it’s because we go to the Zoo frequently. I had no exit plans for the water park and I knew I was in big trouble. I said let’s get some ice-cream. Nothing. Let’s get Papa John’s pizza. Still nothing. Can we listen to music. Nothing. What about Dad? Should I call him. Nothing. Absolutely nothing I said to him helped to usher our departure. And so what started as a fun, even uneventful day, ended up in massive meltdown.

I was that mom with a child crying inconsolably that everyone started to stare and stare. If I could hide, I would. He screamed, shouted, shaked himself, almost took his clothes off even, all because I said we were leaving the water park. It took us close to 30 minutes to change his clothes and the whole time he was crying nonstop. Everyone was staring at us. Everyone. I tried to calm him down. Asked to take deep breaths, even held him tightly to quell the meltdown. Nothing worked. It didn’t help that it was an extremely hot day and everyone was tired. His cries meant, baby was crying as he wanted my attention. My other neurotypical son who is pretty chill during these occasions started to cry himself asking that I hold him too. We literally cried from the park all the way to the car and all the way back to were we are staying for the weekend. And yes by the time we got home, I was that mother that said emphatically ‘no more water park.’

I have said it before during our last meltdown 2 years ago during another similar incident at a water park. Something about water parks just doesn’t work for my son. I know he loves water and he would love to stay at one all day if he could, but the meltdowns at the end are so severe that it makes me look like a bad mom with everyone just staring with eyes that question why we can’t control him. I wanted to shout that he is autistic. Stop staring and leave us alone. But that would be futile too.

At the end of the day, after still giving him music and ice-cream and pizza post the meltdown, he seems like the angel I know. I almost feel tempted to go back and say, see he is not a terrible kid, just on the spectrum and kindly show empathy to us, to him. It’s the keep for me. Autism is tough, but we are tougher and when you see any child crying uncontrollably, don’t stare. If you can, help to console him. Otherwise, move on with your life. Your staring makes it’s worse as he feeds off your stares and no we are not bad or terrible parents. Just parenting as best as we can even through the meltdowns and your questioning stares. And stop staring. It only makes things worse and doesn’t help. Keep this in mind the next time you see an autistic child crying inconsolably at a water park.