Once upon a time, I was not a fish in a fish tank. I was a normal person with a normal life. My hopes and dreams for the future were average, typical, normal hopes and dreams built on average, typical, normal expectations of what life should be.

But autism changed things, turned normal on its head… turned me into a fish.

And so here I am, swimming around this fish tank with my little fishy son.

We spend our days swimming laps together, my boy and I – first to the plastic seaweed, then to the bubbling treasure chest, then through the pink coral tunnel, and finally along the glass at the front of the aquarium back to the seaweed again. Round and around, stopping at regular intervals to nibble on flakes at the surface.

We stick to the same routine. It’s comforting. We know what to expect.

Every once in a while, I notice the world outside our aquarium. My motion slows and I’m drawn closer to the side. I press my fins against the glass and watch.

Sometimes I notice other moms at the playground, smiling and chatting, relaxing while their children play independently on the play-scape and in the sandbox nearby. I can observe them through the glass, but I cannot join them.

Other times I witness the excitement of time off from school or work – the anticipation of a weekend, the joy of a vacation, the thrill of an unexpected snow day. I smile, remembering, but I do not share in the celebration.

By far, the hardest days to view from inside the aquarium glass are holidays because the scenes I observe are accompanied by memories of my childhood when holidays were the happiest days of the year. Those are the days I’d hoped to share with my son, to recreate the magic I felt when I was his age. For me, they stand as a measuring post for happiness. It’s what I cherish, what I know. It’s my normal.

But these special events – the trips to the playground, vacation days, snow days, holidays – they do not make my son happy. They stir up our fish tank and disrupt our routine. His life is thrown into turmoil, and our tank becomes a dizzying maelstrom of confusion and anxiety. Our little fish bodies are whipped around, buffeted by algae and bits of debris churned up from the bottom. Sometimes I can’t tell which way is up, so I just hold onto my boy and wait for the water to calm, the debris to settle.

When peace is restored, we take comfort once again in our routine:
Plastic seaweed, bubbling treasure chest, pink coral tunnel, nibbles of food.
Plastic seaweed, bubbling treasure chest, pink coral tunnel, nibbles of food.

When I first became a fish in this fish tank, to look beyond that thick glass at the world outside was painful. The yearning for “normal” was almost unbearable.

From the preschool parking lot, I watched the children playing on the equipment, chasing each other, shouting and laughing, while my son wandered the perimeter fence of the playground, separate and alone in his own fish bowl world.

My heart ached. I wished for him to play and have fun and enjoy the company of friends. I wished for normal.

I saw his classmates dressed in elaborate Halloween costumes, sitting around a big table together eating a special Halloween snack, their parents snapping pictures, while my boy sat on his para’s lap at a table across the room doing a puzzle. He was agitated and whimpering, bewildered by the chaos.

I took him home and hugged him close, held him until the waters calmed. My salty tears swirled and mixed and disappeared, lingering still as part of our aquarium world. And I wished. Oh! How I wished for normal!

But I must say, the more time passes in our fish tank, the easier it gets. I spend less and less time with my face pressed against the glass, longing for the “normal life” on the other side.

Because I know I will only drive myself crazy and remain unhappy if I don’t adjust my expectations and stop wishing for a normal that no longer fits my reality.

And the reality is that my son requires constant supervision, guidance, and emotional support at the playground and at social gatherings.

The reality is that snow days, vacation days, and holidays are stressful for him because of the lack of structure, overstimulation, and disruption of our routine.

The reality is that schedules and routines make my son comfortable and happy; Crowds and surprises do not.

These realities will not be changing anytime soon. I have to change me instead. And the truth is, my deep pain and disappointment stems from expectations based on my childhood experiences and my dreams for the future. I have to let go of these ideas of “normal” in order to enjoy my son’s moments of happiness, his “special days”.

Maybe he will never like dressing up for Halloween to go trick-or-treating. Maybe he will never anticipate the arrival of Santa. The memories he will cherish of Halloween may be the smell of fall leaves and the feel of the crisp, autumn breeze on his face. His memories of Christmas may be filled with visions of colorful lights and the sounds of crinkly wrapping paper.

Or maybe his memories won’t be of holidays at all. A day does not need to be marked as such on a calendar to be a special day for my boy. It might just be a day when he is feeling well, when he’s had a good night’s sleep and enough to eat, when the moon is in the correct phase and the stars are properly aligned. He’s just happy. Insanely, contagiously happy. It’s a special day – he doesn’t need a reason.

Special moments just happen. Memories make themselves.

I’m not going to lie, the pain is still there – the ache I feel for me, for my son. Sometimes I still slow down and gaze at the world on the other side of the glass. I allow myself a moment or two to feel the sadness – after all, my feelings are not any less real. But once the moment passes, I push myself away from the glass and continue moving forward, swimming laps with my boy. I focus on keeping the waters calm, remembering that when he is happy, I am happy. And we celebrate the special moments when they happen.

It’s not average. It’s not typical. But my family and I – we create our own “normal”.

(Dedicated, with many thanks, to those who dive in and swim with us!)