Ask any parent how much free time they have, and they’re likely to respond, “What’s that?” Parenting is a full time job, one that doesn’t come with sick or personal days. And while the reward of this particular career is not financial (in fact, ask any parent how much money they have in the bank, and they’ll likely respond with the same), the payout is enormous.
Ask any special needs parent how much free time they have, and they’re likely to laugh. It’s not that special needs parents necessarily have harder jobs than parents of typical children (though some do). Parenting in itself is taxing for everyone. It’s just that special needs parents face different obstacles than typical ones — obstacles those who don’t live in the special needs world may not know about.
And how could they?
Special needs parents shy away from martyrdom. They don’t ask for medals or believe they are special people to whom God has entrusted a special task. They don’t run around telling anyone who will listen just exactly what it is they do on the daily (though on tough days they might need to vent). Instead, they believe they are parents like anyone else, albeit parents whose circumstances turned out differently. They believe they are parents whose children bring a different kind of light to their lives.
But they also believe they deserve to be understood.
Outsiders (and I don’t mean that derogatorily, but rather literally — people who live outside this lifestyle) to the special needs community might notice us using social media more frequently than themselves. They might see us eating out a lot more than the average family. They might observe us purchasing numerous toys for our children or sharing tales about our many family outings.
And they might wonder how a group of parents with seemingly so much time and money on their hands could possibly not find the time and/or money required to call friends or schedule get-togethers with extended family or take on extra tasks at work or afford weekend trips across the country to see loved ones.
I’ll tell you why. It’s because all that time and money spent on social media and eating out and buying toys and going on family outings are not simply for leisure. Instead, they are part of the costs of having a child with special needs. It sounds ridiculous, I know. But it’s not. And understanding that it’s not is an important part of understanding the lives of special needs parents.
Allow me to explain.
Having a child with special needs comes with added costs — both tangible and intangible — that having a typical child might not.
Having a child with special needs costs a lot of time. At just two years old, for example, our son averaged 3 hours (3 visits) of therapy per week (and that’s not including visits to specialists for swallow tests and home therapy visits and orthotic fittings and home therapy sessions without professionals present and neurologist visits and EEG readings). This means that at that point in his short life, he had endured 408 hours of therapy total thus far.
But it doesn’t stop there. It takes us 30 min. each way to get to and from the therapists’ office (and that’s nothing compared to the drive many special needs families face). Luckily, his therapists have been able to schedule 2 of his appointments within an hour of one another on the same day, which means we only have to drive there twice per week. Still, we average 2 hours of driving to and from therapy per week, resulting in a total of 272 hours of driving in his first two years alone, and that’s on top of the 408 hours of therapy.
That’s a lot of time to spend on therapy. Is it any wonder we use social media often and eat out so frequently and don’t have time for uninterrupted phone calls or added responsibilities at work?
We can only read the same waiting room magazines and novels from our collection for so long before we take to Facebook and Instagram and Twitter for some mindless entertainment between the receptionist’s insurance questions and the therapists’ progress reports. And some days — especially the days in which we pack 2 therapy visits at once — just the thought of driving home and starting dinner at 9 pm makes Chinese water torture look enjoyable.
This is why we sometimes don’t have the time or the energy to pick up the phone or assist on that new project at the office. It’s not that we don’t want to. More often than not, it’s because we can’t.
Having a child with special needs costs a lot of money. We are fortunate in that our health insurance covers most of our son’s doctor and therapy appointments, but not all parents are. I can’t even speak to the costs these families incur, but I know it’s a lot. I know it’s more than a lot.
We tend to spend most of our money on gas and food expenses as well as the occasional toy purchase and family outing. We average $11.00 in gas per week and $80 in eating out (and that’s only if we eat out on days we have to drive to therapy). That’s over $10,000 we spent in two years without realizing it at the time. As for the toy and family outing expenses, I can’t even offer a number. Every toy we purchase and every outing we go on is for therapeutic purposes. Not a thing we purchase for the kids or do with them — not a damn thing, including eating and navigating large crowds at the zoo, for God’s sake — is free from therapeutic value.
This is not meant to impress anyone with how much money we have or don’t have or spend each week. Other than to make myself sick by looking at how much we’ve “thrown away,” it’s to make the point that we have costs which seem minimal on the surface but which really add up, making purchasing airline tickets to visit friends or getting a babysitter to have dinner with another couple sometimes very difficult. Believe us when we say we want to. We more than want to. We sometimes just can’t.
Having a child with special needs costs a lot of relationships. Friends and family call or text in the middle of a doctor appointment or home therapy session or dinner out. It takes a day or a week or sometimes even a month to get back to them.
And sometimes it seems like we’re blowing them off or choosing another activity over them.
But that’s not true. It’s not true at all. Usually we’re driving someplace or fielding apocalyptic-grade meltdowns or working or trying to get one second — one rare, priceless second — to ourselves. Usually we want nothing more than to drop what we’re doing and chat or meet for coffee or spend an evening out. But usually, that desire is just a pipe dream, because usually, we have some unavoidable responsibility to our children or our family or ourselves.
We’re not choosing to ignore our relationships. We’re choosing to do what’s necessary at the time, and an unfortunate price for that is sometimes the loss of relationships that are precious to us. But they are just that: PRECIOUS TO US. Believe us. They really are.
Having a child with special needs sometimes costs one’s mental health. For me, it started with the news that my child had suffered a stroke in utero, which killed half his brain, resulting in seizures, hemiparesis, and cerebral palsy. Being a teacher and the niece of an uncle with Down Syndrome, I knew what this meant for my child — the obstacles that lay ahead of him.
I was depressed and in an extreme state of anxiety for almost a full year. Now, it’s mostly stress with the occasional bout of pity for my child, myself, and my family.
The stress is inescapable and turns me into a crazy person. Just tonight, for example, I found myself driving in tears, pounding on the steering wheel and cursing the road unintelligibly, all because I’d gotten on the expressway going the wrong direction with the check engine and low fuel lights staring me in the face. To passersby, I looked insane, but in reality, all I wanted was a day when I didn’t have a damn appointment of some sort — a day when I could spend sun-up to sun-down in my pajamas, ignoring my car and pretending the dishwasher isn’t clogged.
The pity parties, while not that frequent, do take their toll occasionally. They turn me into one of two things: a blubbering mess or one mean bitch. Sometimes they turn me into both. I get sad, and then I get angry, and then I get mean. And this meanness can last for hours. I snap at my kids and my husband. I don’t want to be around people. I am rude to strangers on the road and in the grocery store. I say and do things I instantly feel bad about.
The stress and occasional woe-is-me are no different than what other parents experience. It’s just that sometimes when special needs parents experience them, they can’t walk away or take a break or give themselves a second of peace and quiet, which makes moments when they can that much more essential.
We’re not unstable or introverted or cruel. We’re just trying to cope, one day at a time.
The point of all this is not to imply that parents of children with special needs are any better or worse than parents of typical children. It is not to extol our roles. It is not to elicit pity or anger or charity.
Rather, it is to cultivate understanding. To offer a glimpse into what makes us tick (or not tick on certain days). To open our world up to those who do not live it and ask that they give us a break or a kick in the butt when we need it.
We appreciate you understanding why we tweet as much as we do or why we seem to throw our money away on costly dinners and family excursions. We appreciate you understanding why we haven’t called in a while or why we can’t make it to your destination wedding. We appreciate you understanding our moodiness and occasional introversion.
Most importantly, we appreciate you standing beside us every step of the way.