Authenticity,  Community,  Emotional Intelligence,  Health,  Mental Health,  Motherhood,  Self Awareness

Raising Autism: celebrating out of the box Being.

I have been a parent for 5 years to a beautiful girl named G. With each additional sibling, we would adjust and maneuver our way into a new normal. It would hurt like hell, but it was OURS and we fought for that beautifully complex normal.

When my oldest was 2 I began to suspect she was “different.” I don’t use that word lightly; I have worked with children since I was a child myself… I had seen this before, but in my naivety I assumed it was a nurture problem, not a nature problem.

My oldest daughter was an amazing baby— as long as we kept her routine. I don’t just mean a routine we created for her, no. It took zero time at all for her to demonstrate that she had plans too. As an infant she really didn’t care for my TLC. She would nurse, then she wanted a tight swaddle and for Dad to sing to her. He is strong, and has a low voice, so I get it now… but man, those early days it sure felt like it was personal. Over time she began showing us how extremely intelligent she was. From saying words like “Backpack” at 10 months old, to the way she would captivate a room with her belly laugh… I just knew she was going places. But not before we hit some hurdles.

When she was 2 I began to notice she still  struggled to keep eye contact. I was assured by everyone that it was age appropriate, she was just distracted. But she still HEARD everything, she just wasn’t paying attention with her EYES. From there we began noticing really distinct concerns; loud noises, textures, colors, smells. We once had to quickly leave a park, because she was startled by a balloon popping and she was inconsolable and violent. No one had taught her this was scary, it wasn’t even our party. Her first big Fourth of July celebration was when she was 2; the fireworks in the distance were enough to send her into a full blown panic. She was thrashing and screaming like i’ve never seen before or since. We could barely even hear them sometimes, so it was a combination of sight and sound processing. When we brought this to our pediatrician, they said “Well, maybe you just won’t be celebrating the 4th or July for a few years!” This was cold and unhelpful. Our daughter was being impacted by things we weren’t intentionally subjecting her to… things we couldn’t predict, how could we ease her pain?

No, this didn’t just begin at 2. There was no “and suddenly” about this. I could give a thousand stories, I could go on for a while. My daughter was born with autism, and we simply couldn’t explain away her differences anymore. I’m not going to get more technical than that, because this isn’t really about *how* she became autistic. This article is about raising an autistic child (a girl at that) and my own experience with it.

Like how my 5 year old literally never lied until her younger sister came along and taught her how to. At 5 she is still simply terrible at telling lies, because her deceit is so immature for her age. And here we thought we were just great parents to never deal with this until now (oh how the mighty have fallen.)

Bedtime was always a breeze since she was first born and we rarely broke procedure. Forcing her to “wing it” always ended in tears (for both of us) so we learned to keep it simple and it was amazing. Her internal clock was unmatched, she never missed a beat.

She liked watching Dora The Explorer so much that we began calling her “Moura the Explorer.” Little did we know that this was her first special interest… which is why she said “Backpack” shortly after learning to say Mama— it was a BIG deal. It was air to her. And don’t get me started with our current favorite: PRINCESSES. We wear princess dresses or parafenalia daily. Elsa is our favorite, but G will explain that she is technically a queen. And Arendelle is a place we have discussed at length, the castle is quite large. We still have trouble focusing long enough to remember the entire ‘Let It Go’ song, we have been working on it for a year. For G this is very frustrating— it has led to self harm. She takes her interest very seriously for a small child. With guidance I’ve helped this become one of her motivations for learning to read, a healthy redirection. With help she copes with the laundry days when we had no princess clothes to wear.

Remember, she is only 5.

Some of these examples I’ve given seem age appropriate and I would agree with you. The thing with autism-special-interests is not that they are interested in abnormal things… it’s the intensity and the molecular structure of the fascination. You heard me; molecular structure. They fixate. They take mental notes. They break it down. This is more important than a hobby, it’s more intense than a phase. It’s like a best friend; a relationship that has an ongoing, deepening knowledge base. For a time, or a lifetime, this is their PHD. I’m not sharing all of this to convince you that my normal-seeming child isn’t normal, but to explain that “normal” might not be what you think it is.

More than anything in this life I hope to make the world a softer, gentler place for her. All of the therapy in the world is pointless to me if the objective is simply to help *her* adapt to *our* normal. That’s not my hope for her at all. She has so much to offer. I want her to thrive. I want her to feel safe and authentic. For us a label helps to open doors, while simultaneously taking her OUT of the societal box that she’s expected to live in. To me a diagnosis isn’t a box to categorize my daughter and explain her away… it’s the opposite. It’s the sky. It’s freedom and understanding. It has allowed me to shift gears from fearing she would never develop the same as her peers, to celebrating who she is inside and helping her grow at her own pace.

Not everyone feels this way about diagnostics and labels, we can disagree. I respect the journey you’re on, and I sincerely pray for peace and joy. For us and our beautifully complex normal (something fought for with blood, sweat, tears and ER visits) raising my autistic daughter is a privilege. Little girls like her will change the world.

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