Autism has a tendency of ruining things. Having an autistic child ruined my life.
Yes, friends, that was my mindset.
- Autism ruined a holiday
- Autism ruined my life
- Autism ruined my relationship with my daughter
- Autism ruined my marriage
But I couldn’t have been further from the truth.
I’ll take you back to a time when I thought differently. A time when I was quick to blame autism for just about everything.
And yes, I mean autism specifically and not my child. I would never say that my child ruins things because it’s entirely untrue. Her autism, on the other hand, oh yes – I could place blame on that for plenty of things. First, autism robbed me of my hopes and dreams for my daughter once we got the diagnosis.
But that was only the tip of the iceberg.
Autism would ruin so many other things. And perhaps you may think that ruin is too harsh of a word. But I think it’s highly appropriate. As we’re in the midst of preparing for Holy Week at church, I’m reminded of how autism ruined yet another holiday.
Why I wrongly believed that my autistic child ruined my life
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I will reiterate because I think it’s worth repeating: having an autistic child has not ruined my life. It has altered my life and I have made many adjustments. But it has not ruined my life.
Autism, not my child, is what I am blaming. -This was my mindset for so many years.
In fact, it got to the point that I started blaming autism for ruining holidays.
Such as this example, where I wanted to say that Easter was now in the “holiday-graveyard”
Christmas, Halloween, and even Thanksgiving had already fallen victim.
Though I was able to at least get Sweet B accustomed to Christmas decorations; attending church for Christmas eve was out the window because of the time and it’s interruption of her routine, having a real tree was just asking for trouble (because didn’t it look oh so edible?), opening Christmas presents as a family with a child who didn’t really understand the concept of presents… it was never quite the same.
We stopped visiting Santa Claus after the one year that I kind of made Santa Claus cry.
And Halloween? Forget it. That was a sensory nightmare for her after the age of 5. Add to it that she’s non-verbal and people’s expectations, which I might add seemed a bit unrealistic to me. Beyond autistic children, what about the shy child or the child who might be having a bad day?
Thanksgiving… Well, maybe autism hadn’t quite ruined that one yet. We were still able to have Thanksgiving dinner (though not Sweet B because the menu did not abide to her choices) and we were still able to attend my mom’s Thanksgiving celebration on the Saturday after. But we couldn’t stay for the entire occasion because there was too much noise, or too much smells.
So maybe it didn’t ruin it entirely but autism had certainly made it’s presence known.
And that brings me to the holiday of Easter.
If you’re familiar with the term, Holiday Christian, that’s what I used to be before becoming an active member at my current church. We would only attend church on holidays and in particular on Christmas and Easter. But, since we were already skipping out on Midnight Mass, Easter would soon follow on the list of victims.
At first, my daughter’s autism alienated me from God and from my faith. God was one of the first people I blamed after she was diagnosed. Being the parent of a non verbal autistic child has challenged my faith. And it has also affected my relationship with God- but in a good way.
The Easter that changed everything
The church that we attended at the time, a traditional Roman Catholic Church and the same one that Sweet B was baptized in; the same church that her father had been baptized in and had served as an alter boy. Though I had never gone out of my way to get to know people, the congregation had been mostly welcoming.
That was until the odd outburst during an otherwise solemn and silent occasion.
Because sitting in the pew and listening to the priest was becoming just too much for my fidgety, autistic daughter.
And so we got up, went to the back of the church, and then proceeded to go outside. The church is located next to an elementary school and being that it was a Sunday morning; Sweet B had the playground to herself.
So even though the secular side of Easter fell to the wayside, we could at least hopefully salvage the fun side.
And we did.
Though she would never consume the chocolates and candy that were so carefully arranged in her Easter basket; she did appreciate the books and the stuffed animals.
The Easter dress was never really appreciated either, but I let that one slide. It was only twice a year, after all, that she really dressed up.
And the Easter bunny? Forget it. The first time Sweet B saw the Easter bunny for pictures was when she was 3.
In her eyes, this Easter bunny was no more than a giant stuffed animal to be used in a similar manner as all of her other stuffed animals. So she bit him, tried to hit him, and wanted to use him as a stimming tool. So after having her picture taken and apologizing profusely, we left. And then we waited until she was 6 before attempting to visit the Easter bunny again.
Looking back, it seems that autism has impacted almost every aspect and area of life. From the everyday mundane things to holidays and special occasions. Nothing was safe or left untouched.
But maybe it wasn’t that it ruined it.
Rather it may have allowed for me to come to a better appreciation. Because I do appreciate things so much more now that Sweet B is older. I appreciate all of the little things that I get to do with Squeaker that would have been nearly impossible to do with Sweet B at her age.
My autistic daughter has taught me so many things about myself- both as a person and as a parent.
Autism did not ruin my life but it did open my mind
And I appreciate the opportunity to connect with my autistic daughter in ways that are meaningful to her- even if they may not make sense to anyone else; myself included sometimes.
So maybe autism didn’t quite ruin another holiday. But in some ways, maybe it did.
Then again, when I look back and think about it; it’s not even about autism. It’s about how we handle the situation. It’s about looking at things differently. And it’s about learning to appreciate every little thing.
I can’t always blame autism and I don’t want to blame autism. My daughter is autistic and that’s never going away. And I’m more than okay with that. Autism is a part of who she is. But it’s not everything that she is.
So did autism really ruin a holiday?
Did autism really ruin my life?
Ultimately it’s not the autism that ruins things. It’s how the situation is handled.
It was about my mindset.
It was about my own coping skills.
It was about my own approach.
It was about addressing my own mental health issues.
Autism was never truly to blame or the real catalyst. It was just the easy scapegoat.
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This makes me appreciate the things I take for granted with my family. It has to be such a challenge for you and your family but I love how you take things in stride and find ways to make it work for your daughter.