“Normal” – My Life As A Fish

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!)


14 thoughts on ““Normal” – My Life As A Fish

  1. My God, I marvel at the way you weave such magic with your writing. Surely a book of your living-with-son-with-autism is a ‘must’ – not just as support fir other families, but to educate the rest of us.

    I can’t remember where you live Jen. Are you part if online or local support groups. Have any caretakers who give you respite from the fishbowl? I know you will, and do, give all you must to your son, but we must find some support to keep you from a life of ‘quiet desperation’.

    Much love, empathy and admiration. sammy

    • Thank you so very much, Sammy – Your friendship, encouragement, and kind words of support are always such a source of inspiration for me!!
      And you are so right about the support groups and the respite. I am actually part of an on-line group as well as a local support group that meets several times a month. Really wonderful people! Meeting other families and seeing how they work around their “new normal” gives me hope for the future! We also applied for a respite grant to get some help at home, and with my son now in summer school and my tutoring job on hold until the next school year starts, I’m taking some time to recapture those things that give me peace. Meeting friends for coffee, going for a run, reading, writing – my much needed time away from the fishbowl!! I’m very sure it will become a blog post in the future, lol!

      • Oh, good,I really do worry about you. Having children is stressful enough without timeouts for you, let alone all the special care and attention you need to provide. I’m especially glad you might be able to have some in-home respite care for temporary breaks, and I hope your son adapts to that.

        I so love your writing and creativity. You paint beautiful, yet haunting, images with your eloquence.

        I think of the many artists, composers, musician who have had mental illnesses, special needs, and emotional challenges and how brilliant their creations can be. I’m hopeful, through time and therapy advances that your son will be able to unlock his abilities and live to his fullest.

    • Thank you, Ali! I’m so happy my story resonates with you. It’s nice to connect with others who can empathize with difficult situations and feelings that are hard to put into words. I wish you “calm waters” and many moments of happiness in your fish bowl. 🙂

  2. Wow Jen! You are an incredible mom! Like the say “just keep swimming”. It’s of course easier for me to say than for you to do. But you’re doing amazing job creating a life that’s normal for you and your family. I too can relate to what you’re going through, there are “normal” things that my son doesn’t do, like, or participate in and I am just trying to figure this all out as I go.

    • Thank you so much, Judi!! You’re an amazing mom, too!!
      Figuring it all out as we go – that pretty much sums it up for a lot of us, especially when you have a child who marches to the beat of their own drum! I bet years from now, after we replace those “normal” activities with traditions of our own, we’ll find they are even more special and meaningful than they would have been otherwise. 🙂
      Good luck and keep swimming!!

  3. Firstly, Jen, as always, your writing is growing more exquisite and deeply moving. Illustrating your life through this blog is quite a magical gift you’ve provided, and I feel lucky to have a peek into this world and see how you manage it.
    Secondly, I think “expectations” we create for ourselves, or that society creates for us can ruin something so profound as one’s unique world experience. We’ve set up these human rites of passage and calendrical “special” days, but in reality, it’s you and your son who are living a life much more novel and distinctive. You are not being guided by anything other than an internal stirring, and inner reaction to what is real and true and right before you. That is precious. And I’m filled with admiration for you, but I realize the strength it requires to accomplish that.
    So soldier on. You are amazing. Embrace the ‘new normal.’

    • Thank you, Shelley!! You are so wise, and your comments make so much sense. It’s amazing how long it has taken to let go of those expectations – it’s a process, that’s for sure. I am definitely more at peace now with the idea of creating new traditions with my son and not making a big deal about the way things “should be”. It’s freeing, really. I don’t know if you’ve noticed this where you live, but here it seems that everything is done “over-the-top”- from birthdays, to Halloween, to Valentine’s Day! Although I’m sometimes disappointed that my son may be missing out, there’s a part of me that is actually relieved to not be bound by the idea that every calendar holiday must be special and memorable. (Is my “introvert” showing? Lol!) It’s really a gift my son is giving me – reminding me what’s important and teaching me to avoid the hype! 🙂

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