My Life In Sachets: Parenting My Teen Son With Autism

It's 3 p.m. 

My son and I are walking to the supermarket to buy turon and to meet my brother. As the friendly girls at the canteen know by now, turon is his favorite snack day in and day out. 

The neighborhood is quiet. My 210 pounds, 5'9 tall, 16-year-old child with Autism Spectrum Disorder (ASD) is the lone figure on the street. The kids in our neighborhood will be brought home by their school buses later. My son's school closed during the pandemic.

I'm starting over again after my separation and after leaving a job. My brother, who treats us regularly to groceries, asked why do I buy things in sachets or small cans? 

I explained that people with autism are either oversensitive or undersensitive to sensory information. Food for sharing or an entire toothpaste tube maybe overwhelming for him that once he starts to eat or use the toothpaste, he would want to finish it all. 

What works for both of us is to buy things in sachets. Or portion food in containers. But otherwise, it's like hide-and-seek game for us. My house has hiding places for say, a loaf of bread, a bottle of jam, and soap. I have bags stuffed with biscuits, among other things. And sometimes, he beats me to our little game.

Until I find a school that would fit his needs, what I can offer him is experience, such as teaching him math, reading, even science in the context of everyday things and his daily household chores. Letting him write the grocery list, measuring ingredients for cooking, reading books, gardening—there are learning opportunities here.

RELATED: What Is Autism Spectrum Disorder? Its Range Of Symptoms Including Patterns of Behavior

In the moment

I got reunited with my son this year—after nearly two years. He was living in the province during that time. It was a surprise when the boy I knew, who was just an inch above my 5 feet 1 height (and 130-pound frame) sprouted like a giant. But he was still the boy I knew—gentle and bedimpled, always eager to see me.

But, this time, with the changes that come with adolescence such as light facial around his soft lips, arms and big legs. His voice has also changed. It's booming and low, and no longer the sweet tone that I knew from his boyhood days. 

I remembered what his school director and his development pediatrician had warned me when he turned 12, four years ago: "Be prepared for the new challenges that comes with being a teenager with autism."

Initial shock

As an infant and toddler, my son was a charming and engaging baby. Even before he could sit up in his crib, he would laugh when I say "peek-a-boo" or giggle when I show him colorful toys. 

Being a first-time mom, I guess I overdid it a bit when I enrolled him in toddler gym classes, crafts and arts, even baby swimming lessons—all before he turned three years-old! 

I thought I had it all covered until I observed some things about him. He was flapping his arms and rocking his body, he was starting to avoid my gaze and looked away when I called him. 

'Being with my teenage son [with autism] is a gift—but you'd only need to be patient.'

I had a lump in my throat when the results of his evaluation by the developmental pediatrician came out. He was diagnosed with autism spectrum disorder. Tears welled up in my eyes as if the life my son hasn't started was already over. I cried for days.

The Medical City website defines: "Autism spectrum disorder is a brain-based disorder that affects a child’s behavior, communication skills and social skills."

The site mentions there is no cure for autism. Early detection and intervention are critical in its management. With the therapies given according to their condition, children with ASD can progress in their development and learn life skills. 

In my son's case, his routine included quarterly appointments with his developmental pediatrician, and weekly occupational therapy (O.T.) and speech therapy sessions. 

During his early years, my son was doing well in his special education school. He enjoyed participating in class. But as he got older, his learning difficulty became more pronounced. His level of frustration increased and you could sense that he wasn't happy anymore in that school.

When he turned 12, I discovered this school that focused on empowering young adults with skills that they could use for entrepreneurship. Learning was functional and experiential, exactly what my son needed. My son was enjoying activities like cooking, baking, housekeeping, and arts and crafts. 

But the pandemic happened and life took a challenging turn for everyone. 

RELATED: 6 Sensory-Friendly Home Activities For Kids On The Autism Spectrum

Hello, hormones

With testosterone production increasing ten times in a male teen, changes in one's body and behavior are to be anticipated. The baby that I knew, suddenly, had tantrums that were a little more intense. He was starting to assert his independence. But his inability, sometimes, to express himself also brought him frustration. 

One time, I told him it's time to eat but he just ignored me and continued drawing. When I raised my voice, he got triggered and started shaking me. I firmly held him on his big shoulders and told him to finish shaking me. He realized what he was doing and started saying, "I'm sorry, Mommy, sorry" repeatedly. 

'I've read that repeating sounds or words are sensory information that gives him joy. In his case, it's humming Edvard Grieg and Vivaldi to my delight, or saying "whatatata" or "spell banana turon" over and over again. Well, I just think of them as my son's "love sounds."'

Another time, I was teaching him to do math equations but he couldn't get some items right. In his frustration, he stared to cry and he bit my cheeks so hard. But I didn't show him I was in pain. Instead, I deflected his energy and firmly told him to stop. When he calmed down, we had a discussion about it.  

My son also developed epilepsy. Not all children with autism will develop epilepsy, but epilepsy is a comorbidity of autism. 

The first time my son had a seizure, I was in panic. He was in the bathroom and even if I've told him not to lock the door, he still did. From the kitchen, I heard a loud thump. Then silence. I went into autopilot and just started kicking the door the way karate action stars do it in the movies. When I bore a hole through the door, I opened it and saw my son naked, shaking.

RELATED: No One Has Cracked the Code on the Cause of Autism Yet. But Genes May Play the Biggest Role 

I turned off the water. Called out to him to make sure he's conscious. Then I elevated his head with a pillow. I let him relax on the bathroom floor till he's able to stand on his own. 

So far, thank God, the seizures have become less, if not rare, with regular intake of medications and good nutrition (a ketogenic diet helps) and regular sleep hours. 

Our house is seizure-friendly, which means no sharp-edged furniture. No high chairs. And maybe, in the future, I'll invest in floor mat foam tiles for certain parts of the house. 

Calm and magic

If you're getting the feeling that life is disarray in our home, It isn't always so. Being with my teenage son is a gift—but you'd only need to be patient. 

My heart melts when he says he loves me, when he kisses me, gives me his big "love embrace" (as he calls it) and when he says, "Thank you, Mommy, thank you." 

I've also come to accept his verbal stimming—humming, repetitious words, and grunts—as my aural background when I'm writing.  

I've read that repeating sounds or words are sensory information that gives him joy. In his case, it's humming Edvard Grieg and Vivaldi to my delight, or saying "whatatata" or "spell banana turon" over and over again. Well, I just think of them as my son's "love sounds."  

Living with ASD

When parenting a child with ASD, patience is never an overrated virtue. And you need to master the art of anticipation to avoid tantrums caused by his triggers. 

But first, take care of yourself so you can take care of your child. Eat healthy, keep fit, meditate, and do joyful things because these will all help you become mentally strong, too, as a parent. 

Keep learning and don't think you are alone. Besides family and closest friends, expand your community—connect with parents who are in the same situation and who will be gracious with their insights. Empower yourself with knowledge about ASD. Read up, listen to podcasts. Don't be shy about asking his doctor, therapists, and school teachers the things you want to know more about.

Every day brings a different challenge But I'm enriched by the thought that I get to understand his condition more and I learn a lot of things about myself, too. I know I'm not an awful parent and that I've got a whole lot to give. 

I've also learned how to look at life on a "sachet" basis. To find joy in the dailiness of living. 

There's a Japanese term, "ichigyo-zammai," which means focusing on a single act before you move to the next. In the practice of Zen, this being in the moment is intended to brings clarity. When I deal with my son's concerns "sachet by sachet," I'm able to address his needs with more lightness and understanding. 

There's still so much to do for my son, for sure. Adulthood will definitely be another interesting chapter in our lives. But savoring each day is enough for now as I continue to raise my child with autism, cultivate gratitude in daily blessings, and as I live more with him. 

Francine Y. Medina is a writer, editor, and artist.

If you suspect your child to have autism, please seek professional advise of a developmental pediatrician. Join Smart Parenting Village to connect with other parents and find support.