Loving Mom Wonders How Her ASD Daughter’s Could Have Been Different
That is the question most autism parents have thought but never said out loud because they’re afraid it means they don’t love or appreciate their child as they are.
My kids were both diagnosed on the mild end of the autism spectrum. I will admit, it makes my life a little easier, but they are still on the spectrum, so I do worry.
Sometimes I feel guilty for worrying so much about my kids. Like a parent’s level of worry should depend on which end of the spectrum their child falls.
I know there are individuals that struggle far more than my kids with communication, sensory issues, motor skills, etc. so sometimes I tell myself that my kids must not be on the spectrum.
They can talk, they have no motor skill deficits, very few sensory issues. I tell myself I am imagining or exaggerating the whole thing and they should have never been diagnosed or that they have “outgrown” it.
I tell myself that they seem almost typical….almost. But what I’ve learned is that it doesn’t matter which end of the spectrum they are on.
There is not a competition between individuals on the spectrum to see who needs less or more therapy or who can speak the most words or have the least amount of meltdowns.
We all have our struggles and our journeys. We have all had to adjust our lives to accommodate therapies, behavior issues, and our finances, among many other things. I am allowed to worry.
I worry the most on days I get to witness neurotypical (NT) children talking and playing. When you have never had a NT child, you don’t know which milestones your child “should” be reaching based on their age because you’ve never seen it firsthand and after a certain point you lose track of the milestones charts the doctors give you and you start using your own imaginary, slow-motion chart.
The older my kids get, the easier it is to see the developmental “gap” between them and their NT peers. I watched a video of a NT girl today, and just watching the way she talked and interacted with her parents was hard to watch.
She went to a mall with her mom in the video and didn’t have a meltdown. Her mom never had to drag her out of a store. The daughter never screamed or punched or head-butted her mom. She didn’t wander off, sending the mother on a full-blown search crawling under garment racks and behind dressing room doors.
I looked up the girl’s age, hoping she was at least 6 or 7. She was 5. She acted much older than my daughter, but they were the same age.
It’s hard to watch NT kids the same age as your child and realize how much distance is between them developmentally and behaviorally. It’s hard because you spend all of your time being so proud of your child for all the progress they’ve been making the past few months/years and then after watching a 5 minute video all you can think of is what you must be doing wrong.
And then you feel guilty for comparing your child to another child, because you know you shouldn’t. But still you wonder, what would my NT child be like? I know you cannot separate the autism from the person, and it is not the “quirks” I struggle with.
I love my daughter’s personality and her quirks are what make her who she is. It is her inability to regulate her emotions, or to verbally express certain things to us, or to manage her auditory sensitivity that I struggle with (and by “I”, I mean “she”).
Those are the parts of her autism that make our lives difficult. I’m tired of the meltdowns, the scratching and hitting, the crying and screaming. And not because it makes my life more challenging, but because I want to know how to help HER life be less challenging.
I don’t want to trade kids with anyone or make my kid “better.” I want to see the smile on her face that I see on NT kids’ faces. Not that they are happy all the time and not that she is never happy, but you can see on their faces that they are not struggling internally with anything. You can see on my daughter’s face that she is fighting a big battle almost daily. And any good parent hates to see their kid struggle. Especially so young.
So even though I hate to admit it, yes, there are some days I wonder what my neurotypical daughter would be like. Not because I don’t love my daughter, but because I DO.
Kari Sherwood is a single mom of two, both on the Autism Spectrum. She has a B.S. in Human Development and Family Science, and an M.S. in Education. She works as an Instructional Designer and resides in Port Clinton, OH.
This article was featured in Issue 44 – Strategies for Daily Life with Autism