Public Ponder

By Daniella Mini

Hi there fellow mom,

I too have an autistic child, except he’s not a child anymore. His name’s Diego and he’s 27.

You’ll go through various stages when it comes to how you view your child and his autism. I’ve been through every stage in the book so I thought I’d share how it’s gone for me, at least up to now. I hope knowing what to expect will save you some anguish.

You’ll obsess about scores and tests, and pray that the gaps between below average and average will narrow. One day, you’ll realize testing serves only one purpose: advocating for your child. You’ll also understand that scores measure what matters to society, not what matters to your child.

You’ll feel sick before, during, and after important school meetings. I for one had to excuse myself and head to the ladies’ room right before every IEP meeting!

You will not resist the power of denial.

I was convinced I’d fix Diego and he’d be exited from special education, go to college, and just be quirky. I held on to this idea for so long you could say I was delusional.

Anyway, Diego wasn’t “fixed”. He’s still autistic and intellectually disabled.

And so, when Diego aged out of public education, instead of going to college, he accessed new agencies and systems.

I felt the familiar panic that surfaced at each of Diego’s transitions. I also learned new acronyms: DDS (Department of Developmental Services), SSI (Social Security Income), LON (Level of Need), to name just three.

God only knows if you’ll need to know these. If you do, I’m here to tell you this:

There’s no need to panic. It will be OK.

Here’s something else: You’ll argue a lot with your child’s other parent. My husband and I even disagreed on whether there was anything “wrong” with Diego up until he was nearly three.

You’ll think you have it worse than everyone else.

In case you’re not aware, relationship problems are actually no less frequent for partners with perfectly “normal” kids.

There’s even solid research supporting this claim. If you want to read it, here’s the link: The Relative Risk of Divorce in Parents of Children with Developmental Disabilities: Impacts of Lifelong Parenting. If you don’t, here’s the study’s conclusion: “We found that divorce rates were not elevated, on average, in families with a child with developmental disabilities.”

At times, you’ll think you’re crazy.

For a good while, only I had concerns about Diego. Everyone else said he was just a late bloomer. As my own mom would point out, the neighbor’s son had not spoken until he was three for chrissakes, and he turned out fine.

When Diego lined up his little toys, he was “obviously” engaged in some interesting geometric feat, my sister insisted. He went berserk when we took a different route to get to my mom’s house because he was “so smart”-my husband claimed- he had learned the way already.

C’mon Daniella, he’s just a toddler!

Anyhow, if Diego’s at all like your child or you’re at all like me, perhaps you’ve moved beyond this God-awful, I-must-be-crazy stage already.

As it is, this stage passes relatively early because other less emotionally attached adults will enter your child’s life.

You’ll feel guilty for not doing enough for your autistic child and for neglecting your other kids. You’ll feel guilty when you lose it. I actually pushed Diego into a pool once because he was driving me nuts. And I bit (yes, bit, with my teeth!) his forearm when he threw a wild tantrum at a store.

Guilt was the one emotion that pulverized my heart.

Fellow mom, if there’s anything I wish for you, it is that you learn to forgive yourself quickly. Your child will.

Plus, somehow, something extraordinary will happen. Your parenting experience will evolve so it isn’t frightening anymore. It will still be hard, exhausting, exasperating, and frustrating, but not a constant source of fear and anxiety.

You might accept, embrace, celebrate or even love aspects of your child you thought you had to battle and extinguish.

He’ll teach you about different kinds of minds.

You’ll learn that financial and physical independence is not the purpose of any life.

Your autistic child might even help you glimpse this truth: that LOVE is the ultimate goal. Love and compassion toward all beings, including yourself.

That’s been the case for me.

Trust me on this: Wherever you are in your journey as a mother, how you feel about it will change. Heck, mine will too. I might write you a letter about it when Diego’s 50.

Until then, take good care,

Daniella

Originally published by Autism Parenting Magazine at www.AutismParentingMagazine.com.

By Daniella Mini

Setting timer — Image by yellowcat from Pixabay

Diego, my 27-year-old autistic son, is the only person I know who never uses “I didn’t have time” as an excuse or explanation for what he does or does not do. Come to think of it, I’ve never even heard him say, “I’m so busy,” like the rest of us do way too often, half complaining, half showing off.

Following are three ways in which Diego understands time differently -and better -than the rest of us mortals.

All Time Is Not Felt Equally

Even before Einstein, we humans understood that our sense of time is relative. One hour is 60 minutes for everyone, yet our experience of 60, 42, 20, 7.5 minutes — any amount of time for that matter — varies.

On the one hand, three minutes of dental torture — not enough sedation, say — can feel like 33 minutes. On the other, 33 minutes watching car videos on YouTube can turn into 3 hours that felt like 3 minutes to my husband.

Heck, when I run for 33 minutes, one day it can feel like twice that long, and the next day like half that long. Running is definitively a pursuit that distorts our sense of time, stretching or shrinking it. Referring to the young, fast runners he comes across on his runs, and comparing their pace to his own, writer/ runner Haruki Murakami notes,

“And I have my own pace, my own sense of time. The two are completely different, but that’s the way it should be.” (What I Talk about When I Talk about Running)

You can also play with time, as my mother does when she sets the timer just to see how much she can get done during that span of time. Leave it to my 80-year-old mother (may God bless her and grant her a supercentenarian life!) to come up with playful ways to use the time dimension to challenge herself.

I’m often bewildered by how Diego experiences time. He can wait while doing nothing longer than anyone I know. He takes his meds at 7:00 PM. (It has to be 7:00 PM unless a valid exception has been stated beforehand.) Sometimes, he will stand there and look at the oven clock for 20 minutes until it gets to 7:00.

To him, those 20 minutes surely don’t feel the same way they’d feel to anyone else doing the same thing!

You Absolutely Have Time (If You’re Not Dead)

Surely the resource we should be managing most carefully is our time, given that, as Nobel-winning economist Daniel Kahneman notes,

“The central fact of our existence is that time is the ultimate finite resource.” (Thinking, Fast and Slow)

There’s an endpoint to the time we have. Specifically, time runs out the moment we die, which means only the dead would be speaking truthfully if they said “I didn’t have time.” As long as you’re alive, you absolutely have time.

You can also measure time, just as we measure other stuff we view as real and absolute: how much we weigh, how many figures in our income, and the number of bathrooms in our home.

Every person’s time on the planet is finite, its duration unknown, unless you’re on death row of course. While the time each one of us gets from birth to death does vary, we don’t live as if we expected our life span to be different from anyone else’s — which is quite illogical since neither longevity nor an average lifespan (78.7 years in the US) is a given for any individual.

And yet, at some level, we all recognize that a high number of years on our death certificate doesn’t translate into having lived a better life. How we live the time we get is the question. As the Stoic philosopher said:

“As it is with a play, so it is with life — what matters is not how long the acting lasts, but how good it is.” Seneca, in Letters from a Stoic

Unlike with lifespan, everyone gets the exact same 24 hours with every spin of the Earth’s axis. And so, when we bemoan not having enough time on any given day, it’s as if we were complaining to the Gods for unfairly granting us just 21 instead of 24 hours like everyone else. Perhaps this is why one of my bizarre fantasies is that I — and only I — get to have 28-hour days and no one knows it, so everyone wonders how I can possibly accomplish so much!

Given individual constraints then, to a larger extent than we admit to ourselves, how we use the measurable time we have is a choice.

I’m convinced Diego just knows this. Because there’s choice involved, it doesn’t occur to him that he didn’t do this or that because he had no time. He just states what he did or didn’t do:

Did you do your physical therapy exercises? “I went to the beach with tia Lole.”
Did you empty the dishwasher? “I was waiting until 7:00 PM after I took my meds.”
Did you brush your teeth? “I did, before I started watching the movie.”
Did you go see Abuela? “I went at 2:43 PM.”

I, for instance, have often invoked “being too busy” and “not having time” as excuses not to visit my mother, who lives a few minutes from me. I might’ve done important-sounding things instead, like finally finishing a report for work that was due yesterday or going to a doctor’s appointment. Or I might’ve opted to go on a run and watch TV.

It’s all the same. I could, if I so chose, have visited my mother instead.

Diego has forever known the absolute value of time, and how it is telling of what you deem important. As the fox said to The Little Prince,

“It’s the time you spent on your rose that makes your rose so important.”

In the end…

It’s not that you don’t have enough time, it’s just that time is the trickiest dimension there is. I’d say Diego grasps time better than most people: like a weird dimension that’s relative in some ways and absolute in others.

A moment of misery can feel never-ending, while an instant of pure joy can make time disappear. Then too, there’s the fact that the most drastic event that everyone will go through will be running out of time — you know, death.

And so, as long as I haven’t run out, I’ll try to use better excuses than “I didn’t have time.”

🎧 Click below for an audio recording of this article. For those who prefer to listen.