I can’t say for sure when I realized that finding adequate childcare for my autistic child might be a struggle. It might have been the time she was on the steps of our porch and decided to freefall. Or maybe it was when I realized her fascination for unscrewing lightbulbs, no matter how hot they might be. Or perhaps it was the various instances where she’s loped straight towards potential danger.
Whenever it was, there came a time where I had an epiphany within myself: even the best conventional childcare would be a safety concern for my autistic daughter.
There was one time that I had no choice, but to hire a babysitter for her. I left various, highly-detailed instructions about my concerns — primarily our front, back, and side doors. I sent a text about it before I left, I left a note, and I sent a reminder text about an hour into the evening. Each of our doors has three locks on them, and all of them are there for an excellent reason: to keep Evelyn safe.
It was only later I realized that the babysitter had underestimated the need for so many locks, and my daughter managed to make her way outside. She wasn’t a neglectful babysitter. She just forgot to lock one out of three locks on one of our doors. It’s an easy mistake that wouldn’t cause any harm, or even be a thing, in typical households. But we aren’t a “typical” household, and the repercussions from an honest mistake such as that could have reaped the worst possible outcome for our little girl.
In the words of the director of the Yale Toddler Developmental Disabilities Clinic, “Toddlers with autism are in constant danger because they don’t understand threats.”
We all worry about our child’s well-being, but when you’re a parent of a child with disabilities (particularly one who is mostly or entirely nonverbal, like my daughter), these worries start to feel less like anxiety and more like a necessity. In every aspect, really, but in childcare mostly because nobody else, no matter how highly-skilled and empathetic, understands your child like you do.
According to survey data published in the journal Pediatrics, nearly half of the surveyed parents who had autistic children had reported their autistic child as missing. Twenty-four percent of them had been gone long enough to cause concern or worry, 26% of them were in danger of drowning, and 65% were at risk of traffic injury.
These are staggering numbers, especially when one considers the added challenges of locating a missing child with autism.
If my daughter were to wander away from home, I can almost guarantee that she wouldn’t respond to her name, even if that person calling her name were me. Instead, she might run away from flashing lights or the sirens of first responders, and it is unlikely she would reach out to a stranger for help.
If I want to feel confident about my daughter’s safety (which of course, I do), then I can’t rely on college student babysitters or in-home daycares anymore. Not because there is something wrong with either one of those options, but because most of them do not have the training or resources to keep my daughter safe.
I worry that she will escape or put her hand on the stove when it’s hot, but it’s not just these potential dangers that stop me from enrolling my autistic child in daycare. Concerning myself over how she could potentially cause harm upon herself isn’t my only worry. I have to fret over other people harming my child because of her disability, too.
A Nebraskan study with 55,000 children showed that those with any intellectual disability were four times more likely to be victims of sexual abuse. And while there aren’t exact numbers for children with autism, “research suggests that this population is extremely vulnerable.”
While not all ASD kids have severe communication disorders or verbal delays, roughly 40% of the ASD community is nonverbal. People who can’t speak up for themselves are prime victims in an abuser’s eyes. After all, if they can’t talk, who are they going to tell? And for me, it’s a risk that’s not worth taking.
But I also know how privileged that is for me to say as a work-from-home mom requiring minimal childcare. Some families don’t have a choice, and must send their kids to in-home daycares or hire an at-home babysitter. And because of the challenges their ASD children face, it can make maintaining that childcare difficult.
When childcare providers don’t have the resources they need to care for autistic kids, it can be easy for them to burn out which leaves you without childcare. It can be tiring caring for any child. But when you’re caring for someone who has autism, this level of exhaustion takes on a whole new meaning. I have to be on guard 24/7, and I know I’m not alone in this. One study “found that mothers of children with autism spent an average of 9.5 hours per day caring for their child, compared to 5.3 hours for parents of typically developing children,” according to Autism Spectrum News.
Differing numbers like these are prime examples of why services like respite care are essential for families like mine. Outside of grandmas, it’s tough for me to find someone I trust to watch my daughter the way she needs. And although I’m not working away from home, respite care would offer a much-needed break for my family. I could do some things around the house, catch up on work, or take a quick nap (something in short supply these days) while a trained professional cared for my daughter for a couple of hours. This kind of supervision can be huge for parents who feel like they spend their entire day tending to one child (and, no, we aren’t complaining). Respite care not only provides us with time, it provides us with mental healthcare. We can decompress and rest knowing our child is in safe, qualified hands.
Finding childcare for your autistic child can certainly be daunting, but that doesn’t mean it’s impossible. Reach out to local support groups for parents of ASD children, talk to your child’s developmental pediatrician about resources, and check out what services corporations like Pathfinder may offer.
I had a hard time accepting that we might need extra support at first. I struggled with the idea that we could be taking help away from another “better suited” for services. But then I realized that we aren’t a typical household, and the government created these services for parents like me. So although I do work from home, it’s okay for me to need and take a break, too.
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