I have this memory, etched forever in my minds extremity, of tears, of chaos, and vows that I made, as winds rustled by, that you my son, the one God gave to us, the one that taught life’s extremities, those that flair up on their own, those that rhyme on their own, those that bang, those that tick, all of them that occur during nights without stars. I remember all of them so vividly, moments with no roots, to nourish us, no stems, nothing, just detached and naive about life and all its extremities. Yet these extremities took their own time to flower, took their own time to reveal the budding promise we made with the wind years ago, that come rain or sun, come rainbows or spectrum, the flesh of my flesh, and the bone of my bone, will one day surpass the tears we cried so long ago. To see that day come, even a glimpse of it, is to see a dream come through. One without fear for a tomorrow so near. Keep believing even in tears.
My son, my better me. If you knew his story, you would know why this post melts my heart. Keep all your tears. They are a reminder that you have been through so much more. Tomorrow would be brighter.
Children would laugh and I would sit back and sigh.
There is no place like home.
Not in form, for some.
So thank God for all the roosters, turkey, cows goats and monkeys we saw along the way.
Also thank you to all the trees that swayed around, ushering gentle kisses along the way.
They allowed me to keep dreaming and my children to keep laughing, keep being limitless too.
We will be back, only though I know with whom and where we belong.
There is no place like home.
Not in form, for some.
I am a mom to a child on the spectrum. Our trip to Nigeria over the holiday break made me choose to tell our stories more in 2023. Why? I saw ugliness and disdain for autism in Nigeria. Also not from strangers, but from those I call family. I have asked myself questions upon questions. Wondered out loud whether I thought things would be different all became we came home. We came home after all and so yes, I expected acceptance, love, understanding, patience, even joy. There is no place like home after all.
But rather, I was met with an attitude that might as well be described as hatred. We of course had a bumpy ride when we landed. We were stuck in a hotel room, exposed to the loud sensations of Lagos and yes, my child longed for the sanctuary of our home in the US from the moment we got to Lagos. It didn’t help that our first week there meant that I was working so I wasn’t even present to help calm his anxieties. And they were a lot. Justifiably so. We live in a home that is literally surrounded by trees because I know first hand what green space can do for children on the spectrum. I literally took a semester long class focused on this during my time at UIUC. We were lucky to see some trees in Lagos but the noise and constant chaos meant that the first couple of days were full of dread for the place we were to call home for a month. When work ended and we finally moved to our new place the following week, things began to settle in place. He had his music. We had more space and life seemed to move at an easy pace. We also removed ourselves from things that triggered his anxiety and that helped a lot.
But the time we got to the village. Even in the midst of all the flies that would often trigger a loud response from my son, he finally was at peace. I watched him everyday waiting for one loud scream or loud tears or even anything. But I got nothing. He was at peace. I would secretly watch from afar how he interacted with folks. They were minimal, but still something. He didn’t scream, didn’t cry, didn’t even yearn to return home. Rather he played with his siblings and cousins, ran around with all the animals he saw around him, named them too like Ellie the Cow and Sam the Turkey. I was struck by his sense of joy for a place many dare not travel too due to the uncertainties in Nigeria. Indeed, when you are home, there is no place like it.
I was born and raised in Nigeria but this was my third trip to a village so I too was taken aback by the serenity we felt for this space. Then it occurred to me. People will never understand your ways. Home is home and something your spirit know has no bounds. Even when people judge you and count you off even when things go wary, when you are home, your spirit knows. So keep living beyond their limits for you. Keep being limitless too. If we only stayed in Lagos, our trip would have indeed been miserable, but the village changed all of that for us. The Igboness side of me, felt that it was because we were truly home and there is no place like it. It was as if my son’s spirit knew that he was walking on the land his people once walked, once lived in too. His spirit, or chi felt at peace at home. Mine too. I saw beauty beyond words for a space that welcomed me, welcomed my children, and allowed us to see joy, feel joy and know joy, even if only from animals that roam around or tall trees that sway around or the perfect peace that resonates when you are surrounded by those with whom you truly belong to.
I look forward to giving this back to him some more. The memories from this trip and our time at the village was priceless for us and especially my son. It restored my faith with being a mom with a child on the spectrum and living in Nigeria. We will be back. Only now, we truly know with whom and where we belong.
I knew there would be stares. I expected it. I knew many would never get his ways or ask questions about his tears. I didn’t realize they would stare, or laugh or drive us away. I also didn’t realize we would be shunned or pitied too as if to live with him is a deadly disease. I didn’t realize it would also come from those I considered family, those meant to protect and shield us from the questioning stares of strangers. That I would feel regret for bringing is all I feel. Questions keep playing in my head. What did I think would happen? How did I not know people would stare or shun us? Did I expect everyone to know and understand autism? What happens next too?
At first, all I felt was anger. Hatred too. I hated how they looked at us or shunned us. Hated that they would never get to know the bright boy we all know because his tears was deafening. Hated that I would now have to shield him more from the world and their ways. Hated that they see us from a lens of pity.
Truth is I have zero tolerance for people and their pitying ways. I’m able to live and thrive with what they see as chaos. He makes me a better being, with life, work and everything. I would never trade him for anything. He is what God brought our way anyways.
To the older gentleman that took care of us at the airport, the one who saw past his ways, his fears, the noise, the weariness, thank you. I know our paths may never cross, but I’m writing this because you were the first to show us humanity’s best in Nigeria with living and traveling with an autistic son. Your kindness and tenderness to us is not lost on me. Even the little walk you took with him helped to restore my faith in people. To the rest, cross me off your contact list. I’m petty like that. I really have no use for you in my life. I don’t care if you are still family. I can act and will win an Oscar where you are. I really have no need and desire to ever see or hear from you. You can save your pity for your existence.
How I feel these days with being a parent of a child with autism in Nigeria!
I love these lines. They are from an artist my son listens to on repeat. His name his Phyno and my second son is his biggest fan. Phyno sings and raps in Igbo and has been a tremendous source of comfort for my son when sensory issues get in the way. For example, we got through our vacation in Jamaica, because we put all of Phyno’s music on a mini iPod for music only we purchased on Amazon. I am truly that parent that does not subscribe to IPads or tablets, not on vacation and certainly not at home. My kids have them. In fact they have 2 because I hid the first sets and had no idea where we kept them. So I ended up purchasing new ones thinking they would help my children with play and learning. Let’s just say, even those are hidden now and I have no idea where and intend to not even look for them. I do know we will keep music around and I’m tempted to try kindle only tablets for books only. But till then, music is all we have at home.
Image from The art hotel. The eyes are like karma to me. I keep staring at them. We are never what we seem, even at first glance, like my son and I. So ignore us at your peril.
To get through the summer vacation, we exposed my second son to all the music he loved, watched as he engaged with some and not the others, and evaluated a changed in his behaviors over time. Of course, it was a mini research for me. I am a trained researcher and conducting researcher has helped me cope with a high functioning son on the spectrum and these days music has a way of making things big and bright for us. Today, on our way to Piano lessons, while listening to Phyno, I was moved by the words: ‘I promise you, I’ll be right back like karma.’ Everything about it is lyrically beautiful, but it’s their intent that I choose to keep today.
The past couple of days have me doing things that many thought I didn’t care of or ignored. I have always said that people ignore me at their own peril. Every single thing I do is for a reason, down to the words I write. Of course they are never clear when I spew them out and these days expressive writing is all I do, another evidence based research with healing properties. Whether writing or music, if you ignore me and all I stand for, I promise you, that you will come back to me like karma. It’s my gift and my curse.
I know my soul and when I set out to do anything, what you won’t get is repetition or cut and paste because old things bore me. It’s the reason why I actually don’t like presentations as I work too hard on them. I also think 60 minute meetings are boring and unproductive. 30 minutes of focused attention does wonders. Fifteen minutes are insane but phenomenal when you have a clear agenda. I share all this to loudly say, ignore me at your peril. What is in me is greater that me and if you do, I promise you that you will be right back to me like karma.
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 will write one day, how music got us through our vacation with my son on the spectrum!
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.
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