A Day in the Life - The realities of living with children with Autism

May 29, 2016

Last night was a relief. After three nights of my daughter waking and crying for a large chunk of the wee hours, we were all able to sleep through to the morning alarm. My daughter is eight years old. Full of anxiety, sleep still doesn’t come easy to her. I wonder what our morning routines would turn into without these occasional breaks. My son began sleeping through the night at age 11, we hope we are nearly there with her. A cruel trick of having ASD, is that these very children who so need their respite from their often chaotic worlds, don’t sleep as solidly and peacefully as other children.

My son follows his morning checklist. Before we created the list, he would lose track of what came next, stand there looking like a deer caught in headlights when I asked him to get ready, his tension growing by the minute. He craves routine and order. He needs lists. It helps him make sense of a very confusing, and overwhelming world. Breakfast can be tough. This month we find he can only tolerate toast for breakfast. Being oversensitive to textures, it is one thing, on a short of list of things that he can tolerate without gagging before he can finish.

 My daughter sits on the floor, an ever growing pile of clean socks beside her. She is, as usual, searching for the one pair whose seams and threads don’t feel painful and distracting to her. Sensitive as the princess sensing the pea under twenty mattresses, she will be distracted by the tags on her clothing, by scratchy new clothes, and she cannot stand the feel of shorts or denim pants. If this were not a school day, it would be her standard uniform of soft, stretchy pants and t-shirt and the morning would be easier.

Then it starts. She remembers that today is the day she has a substitute teacher. Things are different today and it scares her. Routine and familiar faces keep her calm. Any change in schedule, a new person, eating lunch in a new spot, a new place. It’s strange and the rules change and she can’t find her sense of calm. Now she starts to sob and panic. She’s trying to take her uniform off as quickly as I can get it back on. She pleads to stay home where she feels safe. I force her to dress and eventually force her into the car, screaming and crying, while the occasional neighbor walks by, shaking their heads at the “awful” behavior.

Her brother, still with his sense of order in place, is ready to go. His notebook binder full of post-it notes to remind him of things needing to be turned in, taken home, questions to ask of teachers. Without his notes, nothing would ever move in or out of his notebooks. Being extremely sensitive to sounds, his sister’s crying and screaming feel like they pierce his ears before the relief of getting to school, and it can often have him so agitated that he begins to scream at her, “STOP, STOP IT” while hitting the window next to him.

At school, he can finally get away from her noise. He gets out and pulls his hat down as low as he can. It’s his way of feeling that he can hide away, even just a bit, from the chaos of bodies and voices all around him. He has been fortunate at this school. He has friends. Friends just as quirky as he is, who hold no judgement towards him, who don’t notice his tics, and who accept him for who he is. It was only a year ago for him that school was a scary place. The boys there would only get close enough to him to deceive him. To pretend to be his friend, only to set him up for jokes at his expense. To, knowing how rule oriented he is, upset him by stealing from the teacher’s desk and then stuffing the stolen things into his pockets or desk, making him cry in class. It amused them. At its worst, he would be kicked, pushed over a desk, followed and tormented at recess. Made fun of for his awkward ability at sport. He was terrified. Every day. Still, he went to school and came home too afraid of worsened bullying to tell us what was happening. Until it became so burdensome that he felt he wanted to die, that he was as stupid and awful as they the bullies told him he was,  until he cried constantly and we had to dig to find out what was happening to our usually cheerful boy. We are still working hard to get THAT boy back, to help him heal and make him believe he is valuable, and so very much loved.

With my son now dropped off, I continue on to my daughter’s school.  There are tears from her, in the back seat, all the way to school on every school day but today is a particularly bad day and she is screaming to go home, kicking the back of my seat. I try everything to distract her. We play her favourite Michael Jackson songs (MJ is her latest obsession and all she thinks and talks about). I talk about fun things we have planned. I tell her jokes. I ask her to take a few deep breaths to find some calmness. What I don’t do, is react to her. Inside, my heart is racing, I feel nauseous, my palms sweat. I could find relief for us both by turning the car around, towards home. I don’t. She needs to do this and, one day, we will find the right balance of coping strategies for her, and one day, when she’s a bit older, she will understand why she needs to go. I want her to have a life with connections and purpose. One she won’t find it at home. So we drive like this, every morning.  I will not walk her to class. She needs to do that on her own so she can become confident in herself. I leave her in the care of her wonderful teacher. Her teacher gets it. For the first time, someone is really working on the hardest part with her. Helping her to connect with other children. How to start a conversation with them, how to ask them questions. She has also given her a calm place to go when all the chaos, and noise, and fears get too much and she starts crying and panicking in class. My daughter is in good hands today.

We know she will get there. The point where she can manage her day, maybe look forward to school the way her brother now often does. We know because we have gotten her brother there. Through lots of love, patience, teaching, therapy, hours of research, and trial and error with strategies. From a boy who would speak to no one besides family, who really seemed not to notice anyone else around him, but lived in his own world most of the time. You might, then, have found him alone at recess, on the fringes of the field, pretending to be a train. Who was so happy and lost in that world that he had no interest in making friends. A boy who would often become so upset at school that he would find places to hide and cry, alone. Years of therapy and hard work have helped him to make connections, to get through his day. He now manages his day, the support of good friends to get him through. They help each other.

My son has learned ways to navigate through the noise, the unpredictability, the direction and instructions that he finds confusing, the social rules that do not come instinctively to him but must be learned. He will get through his day, but it is never easy.

He spends the day bottling up all the accumulating tension, waiting for a safe place to release it. His absolute fear of calling attention to himself - a result of earlier bullying causing him to keep it in until he is around the people he feels safest with. Usually, that is me. I can sense the meltdown coming the second I see him at school pick-up. He walks towards our car, his face flushed and tense, his head down. He doesn’t talk to me. The dial has turned so many notches today that there is no going back.  He forgot to bring in a paper that was due. Tick. He didn’t understand the instructions in class but was too anxious to speak up for help. Tick. The lights in class were bothering him. Tick. He had sport today and the fears and anxiousness made him feel exhausted. Tick. Now we walk in the door and his sister starts singing, he can’t focus. Boom! He’s off. He screams at the top of his voice….at anyone there, he sobs gut-wrenching cries so overwhelming that he sometimes vomits. He tosses over our dining room chairs, punches the wall, rips out chunks of his hair, puts his hands to his throat as if to choke himself. He tells me he’s stupid, worthless, that he wants to die. I stay near him but I do not touch him. He has come too close to hitting me in the past. I stay with him and speak firm but calm words. He has lost emotional control and he cannot get it back until he has exhausted himself so I stay with him, keeping him safe from himself. When he was small, I could bear hug him, the firm touch giving him a sense of calm. I would hold him until it passed. Now, he is far too big. I give him a choice of rooms to calm himself in and it is not easy to get him there. If I can manage it, he will sit and cry until so tired that there is nothing left. Then I talk to him, about his day, about how he could have handled things better, about what’s bothering him. He will talk then and he will apologise, and he won’t stop hugging me, looking for calm and safety again.

There are gifts.  If I could take away their autism, their sensory issues, tics, obsessions, anxiety and social confusion, learning difficulties and planning difficulties……I might lose so much of them. A unique way of viewing the world, thinking very much outside the box, creativity, seeing details through their eyes that other people don’t see, honesty, so much empathy and sensitivity that it overwhelms them, two children more compassionate than most adults I know. Children who don’t even understand judgement. A gift for beautiful things like art and music. Such an innocent honesty, disarming but refreshing in a world where people try so hard to hide their true selves.

We get to celebrate things, every day things that other people take for granted. Last year, my son ordered his own sandwich at Subway. So, while that isn’t a sport or an academic award, it was just as amazing. He had to plan, interact with a stranger, depend only on himself, block out the background noise and focus. When you don’t have to work so hard at the everyday stuff, you miss these reasons to celebrate. To notice how far you’ve come.

This past weekend, I watched both of my children on a surf board, with a stranger guiding them on their boards. They walked away from us with confidence and they threw themselves into a new situation. It’s moments like these that we know their tiny steps, with us beside them, are taking them where they need to be.





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