I watched as she accepted her brothers ways. As she knew he was different, knew he had meltdowns, even knew we called it autism. I vividly remember the day a parent from her school sent an email to me because of what she shared in class. She told her classmates that her brother had an illness, one that makes him different from most children. The parent reached out, to console us. I thanked them and explained his type of difference, his being on the specturm. They understood. I wondered if she did. If she too bore the weight of his difference as she would say. The many times we canceled one activity or the other, one event or the other, was never really about her but him. I wondered if she knew.
Over the years I have seen the toll being a sibling to a brother on the spectrum can take. I have tried my best to shield her from it, from his meltdowns, from his difference. There are days when we struggle and nothing seems to make sense to his brain. On those days, everyone wishes for this difference as she calls it to go away. But then there are days, when his essence is like a ray of sunshine, when his smile is like the perfect poetry, long on words that vividly make the soul leap with joy, like a new born in their mom’s womb. On those days, I wonder what she is also thinking. I wonder if the weight of this difference is a bit lighter on her too.
It’s hard to comprehend what the past 7 years maybe for her. But I still vividly remember the day she first met him at the hospital. Her hair was tied in knots we call thread hair style, a feat accomplished by mama. She wore pink overalls, with a pink turtle neck sweater underneath and pink tights. She was so happy to see us at the hospital. Her joy leaped up some more the moment she laid eyes on her baby brother. All she muttered over and over again while holding him close to her heart was he is mine, mine, mine. He has always remained hers over the years and he knows to. Always seeking her attention, her approval for things as mundane as what to read or how to play. She has become the fearless leader of men, not afraid to walk the earth because she boldly leads the way. I love her leadership and I know only time will tell but for today keep the many wonderful ways of being a sibling in mind. Especially to one on the spectrum. They are beyond resilient in every single fiber of their being because they first loved and saw love differently.
In the spirit of resting, I had this grand idea to go by the lake yesterday. I have heard so much about Creve Coeur Lake and so the goal was to finally check it out. Summer plans for this year will include nature walks and trips to the lake at least in my plan, since it’s only 15minutes from our home. It was also close to 80 degrees by the time we set out around 11am. I anticipate this would be a long hot one given that it’s only May. The lake itself was beautiful. Simple with a long stretch of trail for walking, running or biking. Everyone seemed to be doing the same thing I wanted which is to simply be closer to nature. One of my sons on the other hand, had other things in mind. I keep forgetting about his love for repetitive behaviors whenever he comes across certain things he has done before. Today’s request, a boat ride on the lake.
Early this year, I wrote a post about wanting to go on a train at the Saint Louis Zoo, just for us to end up on a boat ride next the Zoo because of a massive meltdown at the Zoo (the trains were not working that day). Little did I know that despite all his tears and pleas for the train, he actually loved the boat ride and well associated it with lakes, all lakes now. At the Creve Coeur lake, there were 2 white sailboats on the lake and a father with his 2 sons and a daughter kayaking. There were no boat house or places to rent a boat. And so the repetition began. Rather than simply enjoying the walk by the lake, or playing with the water as his siblings were, my son pleaded for a boat ride.
His insistence on going on a boat began the moment we crossed the street and started our walk until the end. I spent the nearly 40 minutes walk we took, assuring him that we will go on a boat ride, just not at this lake but by the boat house at Forest Park which was about 22 minutes from the lake. It was almost like I was talking to a brick as nothing I said to assure him seemed to work. He also seemed to a least walk along the trail so that helped a lot. Plus being close to nature I have come to learn does wonders for his being. Though his insistence for a boat ride occurred throughout the walk, he walked nonetheless, repeating the same thing, as he walked. When the walk was over, I motioned it was time for lunch. Then we go on a boat, he said, almost immediately. I said sure. We got lunch. He barely ate his, just focused on the boat. He even knew the road to the boat house. I never really think that he is paying attention, but with each passing day, I see and know first hand that he is. When we got to the boathouse, the place was crowded. An impromptu band was playing next to the restaurant. I drove up a bit to see if there were any boats sitting on the dock. There were some. So we packed our car and headed to rent a boat. The moment we got on it, my son looked like he was in heaven. Rest also became his portion. I also seemed to know how to drive the boat this time such that we all took the time to enjoy the many wonderful gifts of nature.
Like a white egret which flew across our path along the lake. Or the quiet streams of water flowing through the lake. Yesterday was as gentle and beautiful as I never would have imagine. And a boat ride, thanks to my son’s love for sameness, helped usher in rest. Sometimes society, myself included may feel like we have all the answers and know what is best for us. I am learning everyday with accepting my sons love for sameness, that connecting certain things together like a lake and a boat ride is just as powerfully as merely walking on a lake. We started the day walking next to a lake. I thought that was plenty. But we ended the day literally on the lake. It was the serenity I didn’t even know I needed until my son vocalized it over and over again. I listened and my soul at the end of the day, felt at ease. Keep boat rides on lakes in mind even if vocalized by a 7 year old on the spectrum. They do wonders for the soul. Ooh and now he thinks Saturday’s are for boat rides. Wish me luck this summer.
The school year is coming to an end. My son is thriving. Something that seemed so difficult to do back in the fall, seems so easy to him these days. Homeschooling a child on the spectrum was by far one of the difficult things I have ever done. Not because my son isn’t bright, but more so because home is home and not school. Merging the two, home and school was too much for his brain to handle. And so we had our share of meltdowns, so many that recollection won’t even do them justice. So why even keep this? Because I see the possibilities and potential everyday. I see his light even as the school year slowly comes to an end.
It’s like a switch is flickering, deciding still if to stay full lit, but definitely hovering towards light. That’s what schooling my son feels like these days. Pure night and day. Pure joy and bliss. To watch him do work all on his own, without prompting, without cajoling, without pleading, without even bribing him, none of which worked on our tough days, is bliss. That this day has finally arrived even as the school year comes to an end is like the quote I shared previously about things being impossible. With kids on the spectrum, it will always feel and seem impossible, until they in their own unique way, defy expectations. I was simply fine with whatever we got out of him. But to see him pushing himself, without my help is the light I needed to see at the end of this pandemic school year tunnel. For kids like my son, ‘there is always light,’ like Amanda Gorman would say, ‘if only we are brave enough to see it.’ I see it everyday, and it truly fills my heart with joy. Keep this light for boys, and children like my son. They will defy expectations if only we are brave enough to see it, brave enough to them light up this world. And to see them in their light, to see and feel their potential is the very thing I needed as we begin to wrap this very strange school year up. It’s amazing how he continues to light my world.
My son never ceases to amaze me. He did again with math during homeschooling today. He was preparing for a test next week and his teacher wanted to assess whether he would be able to do it all by himself. The instructions were to give him the worksheet and let him be. I knew this was going to be a long morning. I gave him the worksheet and his pencil. He wrote his name with ease, without any prodding. I should have known that would be the sign of how our morning would occur. He proceeded to start and before completing the first problem, he asked whether he could have my computer afterwards. I said yes. The worksheet was complex, at least to me. It had both addition and subtraction. His brain loves order and so I figured this may not be an an easy one for him. The first math problem asked that he add 8+7. He stared at the problem and did nothing. I asked that he focused. His mind wandered. He asked if he could have the computer again. I said sure. He asked whether he could do the problems on his own. I said by all means. He asked if I remembered how he used to do all his work by himself at our old house. I said of course and can you do the same now. He started to play with his pencil. He looked at the worksheet after close to 3 minutes and said 15, the answer is 15. I was shocked.
I expected him to count, to write out sticks, anything from all we have been doing to teach him how to do math. He had other ideas on his own. I actually thought it was a fluke too and proceeded to ask that he try the next problem, this time 9+8. His mind had other plans of its own. He asked if he could have the computer after work again. I said of course. He reminded me that he could do the work on his own. I said please go ahead. We did this back and forth until he blurted 17, the answer is 17. I was now in awe. How come? If you know what we go through with teaching him anything then you would understand.
Here is a kid who has a love hate relationship with school work with the hate winning on most days. But on days where love is supreme, nothing can stand in the way of the brain’s many gifts. So I proceeded to walk away. Maybe I’m the distraction. Maybe he can’t seem to focus because I remind him always to focus. I went in search of additional light as the room felt dark to me. I stepped away for about 3-4 minutes and by the time I returned, he was on problem 7. I checked prior math problems. They were all correct. I said nothing and watched in silence as the brain did what it knew best. A short time later, he was done. He didn’t count, he didn’t draw sticks, he just looked at the math problem and supplied the answer.
I really have no words except to keep this here today. This is a reminder to myself and to all mothers with kids on the spectrum to say that we should never underestimate the brain’s many unique ways. Here is a child for whom homeschooling can be though, for whom even math problems can be difficult at times, but today, when he did what worked for him, everything, including completing a math problem that seemed complex was as gentle as a breeze. Keep seeing this form of thriving with kids on the spectrum. They do and can underestimate even your own ideas of their abilities if you let them be. Keep thriving even with math
I had this grand idea to go to the Zoo with my children today. It was grand considering how one of my kids loves the Zoo. Not for the animals but for the train rides. We actually go to the Saint Louis Zoo just so we ride the train around the Zoo. We went two weeks ago and it was a hit. I made my appointment for today, got the kids ready, arrived on time, parked and hoped for a glorious day. All of that came to a halt the moment we went through the entrance and I asked for our train tickets. Trains were canceled for the day. My son had a massive meltdown. You mean no train? I said yes. But why? The weather maybe? But I see the train tracks? I know. Maybe we can actually look at animals since we are at the Zoo. We proceeded to try to see whatever animals we could find along the River’s Edge portion of the Zoo. I prayed for elephants or anything along the way through Africa or Asia. But the entire time we walked, my son cried. Not little sobs that you could maybe reason with, but loud meltdowns that are destined to make anyone think we have no control of him. He screamed, he shouted, pleaded for the train, apologized for his tears, all in between weird stares for strangers at the Zoo. Our trip lasted 10 minutes. Thank God for Zoo membership with their free parking. We turned around quickly for nothing along River’s edge could appease him. Not the black Rhino we managed to spot or the cute little warthogs along the way.
Every step we took back to the car, was full of meltdowns and pleading to stay, pleading for trains, pleading to want to stop crying. All of it not sinking into the brain. No amount of stating and restating that trains were canceled seemed to get through. We walked briskly to the car, got in, and drove past the Zoo, past the highway, all the way to the ice cream shop in hopes to calm the tears. It helped for awhile, chocolate sundae with sprinkles and no cherry on the top seemed to do the trick for awhile. The day was still young and so we tried to look for other things to do. Then I got the bright idea to be adventurous for the day. If we cannot get on the train, how about a boat. My other kids said sure, let’s go. My son still wanted his train. I tried anyways to give them an adventure. We got life vests, and a paddling boat for the Boathouse at Forest Park and proceeded to paddle all his tears away. At first, it seemed like the worst idea ever. Two adults in front to paddle and three kids at the back, one on the spectrum. We went around in circle. The kids loved it all. We managed to straighten the boat and went in deep, past the rocks, past the daffodils, past the tears, past the meltdowns.
Adventures with kids on the spectrum are a trip on their own. Though the day started with trains, we ended up with boats which seemed to do the trick for awhile until it was time to end the ride. Of course my son didn’t want us to stop. We tried to take in the moment for awhile, to bask in the beauty around us, to ease the fears, and please the brain’s love for noise. All of that helped. And slowly, we made our way back to the boathouse. To be a parent of an autistic child, is to be prepared all the time for life’s adventure. Of course they never go as expected and it can be tough when the brain wants its way. But I am learning to appreciate the brain’s love for duality. If you can’t give me train, then fine, boats will do. They did for us today and now we have a new desire to return tomorrow for another boat ride. And train if we can plus the Zoo of course. For him, we will try to keep life’s adventure going, wherever the journey takes us. The memories too are blissful. Keep adventures always, whether with Zoo, trains or boats.
He wants to go on a train. He wants ice cream. He misses trains. He misses dad. Stimming is what they call the noise the brain experiences when things are out of place for children like my son on the spectrum. It’s also a manifestation of some form of anxiety, some form of imbalance. It’s also when he needs love the most. Nothing seems to make sense when it begins. We pause, look him in the eye and acknowledge the thoughts. Acknowledge the brains multiverse ways of communicating at that moment. You want ice cream. I say. Fine, but can we get it after school. You want to go to the train station. Ok, let’s go. Any direction you take, leads back to square one. Not because we don’t understand or are not concerned that all the brain wants to do is repeat things, but because with autism, the brain literally has a mind of his own. So we slow things down. We sit still for a moment in hopes to quiet the noise even with canceling headphones. It works but for a brief moment. This cycle goes on, with bouts of tears all entwined with his thoughts down an unfinished, never ending road. Mothering my son is like a famished road.
Ben Okri in his novel, ‘The Famished Road’ started off his masterpiece with the following: ‘In the beginning there was a river. The river became a road and branched out to the whole world. And because the road was once a river, it was always hungry.’ The idea of a road being hungry is the central metaphor of this book, one that can only be satisfied by rediscovering the possibilities buried deep within the road. So too is motherhood. By famished, Okri meant that roads are restless and never finished. As a symbol for survival, he noted the moment they are perceived as being finished, the moment they perish. For finished roads have nothing to do, nothing to dream for, no need for future. Finished roads perish with their completeness, perish with their boredom. But roads unfinished are marvelous works of art noted Ben Okri. They are famished but beautiful beyond description. Famished but created out of the most precious and powerful substances. Famished but brilliantly lined with amethysts and chrysoberyl, and carnelian and patterned turquoise. In thinking about what can be for future generations of mothers like me, knowing that motherhood with all its struggles, all its hope, is like a famished road, ushers a rare serenity.
Like a famished road, mothers like myself begin with nothing and everything. We may know of earlier mistakes with mothering. We may not know that we even know these mistakes, but search deeply, we know. Whether with our own mothers or aunts or other mothers around us, mistakes abound. We all start this journey with some plans or dreams of what it might entail. Dreams of experiences with our children in astonishing, ravishingly colors. Some of us connect and reconnect with all the mothers we know for strength, for advice or ways to become wiser with this thing called motherhood. Sometimes they have the answers. Other times our experiences is as novel as it is perplexing. No one in my family or my husband’s family has experienced autism in the way we have. Even if it lurked in our bloodlines, it characteristics never manifested in the manner of son’s unique experiences. And so we are often on my own, left to make sense of why his brain makes the noises it does, left to help him make sense of this world whether with ice cream or trains, left to even make mistakes, bigger and better ones than other mothers around me did. This in essence is how we mother, from an infinity place of hope all laced with an eternity of struggles. The journey maybe perilous but it’s still ours to take. The journey maybe consistently misunderstood, but it’s ours. The journey may roar like a river on a rainy day, flooding everything around it, smashing hopes for the future, but still it’s ours. And so the roads we must take through this journey are never finished.
But what if we stopped and looked around us. Stopped and notice what we know or need to know and when we knew what we now know. I never thought I would learn about autism. But my son’s experiences have taken me to places I never planned for with my life’s journey. I became an unfinished, famished road. When I needed more information about what was happening to him, whether with his pleas for ice cream or trains, I looked for new directions and new destinations and the road did it’s part. I became an adventurer into the chaos and sunlight inherent in my sons brain. Anything, became possible. Even when the journey seemed perilous, I have stood by in awe and watched how my son’s beauty flowered in the air. Of course not during his meltdowns, but in moments of his serenity.
In those moments, the aroma of his beauty, the aroma of the depth of his knowledge, the aroma of his intellect, conquers the decay of his condition. In the 6 years we have been on this journey, transformation has been taking place even under the potency and strong influence of his brain’s noise. Though he may repeat things over and over again, at 6 years old his reading is at the level of a 2nd grader. Though he may ask for ice cream or train stations, he also knows more than I do, about galaxies and planets and all their inhabitants like little stars. Though he may have meltdowns that can be frustrating, even the frustration can be wonderful music. His brain has learnt how to channel its noise to music, such that my son can play a piano tune all by himself with no training.
These rare insights are why motherhood is like a famished road. We know the special joys, Ben Okri noted. We have the sorrow too. But like a famished road, our destiny, our journey is full of wonder, full of surprises with things we know and do not know. Keep motherhood like a famished road in mind.
She maybe the first to wake up. The last to sleep. The first to soothe the tears or shield the pain. The last to cry her tears or open the hurt. Mothering is both a skill and art. The first is popular. From knowing how to nurture connections with a new life, with the life itself upon its arrival and the greater community to simple gestures of love with every bathing, every soothing, every singing, every caring, every feeding, mothering is a skill that varies with each mother. Though it can be rekindled, rejuvenated, refined, with each passing day, each passing moment that let mother’s relieve the joys of this skill.
But as art, the impression mothering leaves on the woman is lasting. As art, mothering is another matter. Like knocking on a moonlit door, it is full of silence. Even when the knock is louder, the silence remains. Amidst all the loud noise, the crying babe, the running water, silence for her being. Not because her soul isn’t stirred or shaken by the knock. She listens. Not because the knock isn’t louder or that she doesn’t lift her head. She is still. As art mothering is full of this silent stillness. This form of art that engulfs those who mother is often hidden, invisible and between everything else that occupies her being. As a mom to a child on the spectrum, my life depends on it.
When we started my son with behavioral therapy at the age of 2, the goal was to gain skills to help him function above his noise. I learnt new thing’s like the mind’s love for stimming and gained new skills like redirecting the mind. Almost none of the skills I gained worked. The brain was indeed a powerful element. I was prepared to work with my son so long as we got basic skills down like using words rather than pointing or looking people in the eye rather than looking away. But the place where I lacked power was with the crying. When the meltdowns begin, triggered by almost anything, nothing stops it. The brain has a mind of its own.
On one occasion, the meltdown was intense. The behavioral therapist was in our home. She looked like us. One of the drawbacks of therapy is the lack of people that understood your frustrations with few words. Melissa did. She was the reason why I believed therapy would work despite my inability to acquire any skills. But on this day, the crying was strong. She took him to a room. Removed all the things that he would use to hurt himself, kept him in the room, locked the door and proceeded to ask him to calm down. I was silent. My heart was crying, but in silence, in stillness. I listened to my son cry during a period which felt like eternity. Though his tears were visible, mine was just as strong, though invisible. Melissa pleaded, asked for him to remain calm. The brain still had a mind of its own. This process lasted for over 45 minutes with the brain acquiescing. Through Melissa, I knew we could listen to the stress, though the brain may still win. Where Melissa had the power to knock and the brain opened, I lacked the emotional strength to do the same. Everytime I knocked on my own during my son’s meltdowns, the brain won.
Overtime pieces of the tears began to engulf my being. I too began to listen, to dance to the rhythms of the brain, it’s own language. It’s been three years since the incident with Melissa and now, the brain does the knocking. Imagine speaking to an open brain. Overtime, after years of countless knocking, and with the help of countless people, I watch as my son’s brain started to do the knocking, started to open up. Though the meltdowns are still there, they are more refined, more restorative, more revealing. Though his brain may still have a strange way with his being, a silent stillness is my response. Even when his cries grow louder. In stillness, I remain silent, listening to his brain’s language. Even with no words each meltdown has become powerful. And with no words, my silent stillness is just the same. On an occasional basis, the knock may be louder. Is anybody there, the brain may even ask of me. My silence, my stillness is just as loud.
He cannot find his tape. We awakened to tears. He wants to fix something. A book in pieces, he says, between tears. But he cannot find his tape. So he cries. He starts his morning some days like this, crying. Today it’s for a tape. Other days a piece of crayon or a book, even a favorite toy. Little obsessions like this can lead to a day full of meltdowns. All his mind knows is that something is missing. Like a train out of its tracks. Everything stops. No amount of comforting even pleading can reset his mind back to its track until that thing is found. We begin today with a tape. It’s only 6am. But such is the life of a kid on the spectrum.
That we have been helping him get by, past the tapes, past the obsessions, past his tears, past his inability to stop them, is no small task too. We acknowledge. He cries. We give hugs to quiet the noise, he cries some more. We are stern, unyielding. Still he cries. His brain and mind is in control. So we look for the thing preoccupying his mind. He cries further. The tears are strong, unmanageable at times. Some may see cries for attention. Three people are looking for the tape. He knows we care. He sees it in our eyes. He mutters in between the tears, with his hands on his head, a desire to stop the tears, to quiet the inner noise, his brain seems to relish. To know him, his frustrations, his obsessions, his tears, even his inability to stop them, is to know love..
Ritamae Hyde, a Belizean poet wrote a poem about a Mother’s love. In it she shared how a mother’s love cannot be confined to beautiful words or abstract expressions. But her love is and remains one of the purest form of human expressions to be felt on this earth. This love she writes about so eloquently portrays what lies silent, under, between, hidden, beneath, and invisible for mothers, and other mothers who mother a child on the spectrum. With torn and crying hearts, we look for tapes. Amidst a desire to quell his inner noise, our insecurities, we turn the room upside down. We hold, we hug, we plead, we pray, still the brain wins. We hide our tears, our crying hearts wishes to spill. Only thing left then, since we have been here before, in times of labor, in time of unbearable pain, is the purest form of expression, one we felt in the beginning, one we still feel even in this moment, is love.
Through the tears, we love. Through the missing tapes or crayons or books, we love. Through the inability to stop, we love. That is the purest form of expression Ritamae writes about, one we want to share that all children on the spectrum need. Whether in the beginning or the end of a meltdown, for a missing tape or anything else, give love as only you can. Keep this mother’s love for children on the spectrum.