It never fails that when we go out as a family, we get a lot of attention — not because we’re celebrities, but because we’re a family with children who have special needs. With special needs being a part of our family routine, often enough, we’re the ones who turn heads — not because we want to, but because we have a dynamic that the rest of the world isn’t used to.
On the outside we’ve learned to get used to the looks of sympathy and the whispers. We’re even getting good at coming up with some pretty snappy comebacks to those who feel we need a talking to about our awesome and spectacular parenting skills. But what happens to us on the inside? A lot of parents like us are hurting inside. We are reeling from the cruelty of the outside world. All those hurtful comments and whispers pile up. Those stares and looks are ingrained in our brains and at the end of the day when we have five minutes to ourselves, everything comes back to haunt us. As much as we try to educate those who are willing to learn and those who aren’t, we still can’t shake off the perception that the outside world has of our family.
A lot of us just want to scream about how it isn’t fair to be judged so mercilessly, and that we wish that all those who judge could just for once learn what it means to walk in our shoes. It would mean tapping into what makes them a decent human being. Opening up their hearts and minds to something different from their norm. Sleepless nights because of worrying or a loved one who doesn’t sleep. Trying to do daily errands like grocery shopping while managing a person who needs a little extra time. They would have to go on outings to restaurants and parks and deal with people staring as their loved one attempts to fit in with the rest of the world, all while having no control over their own body. They would have to go to doctor appointments, sit there and listen to the doctor tell them not so great news about the person they love, try to get home and process everything. They would have to argue with a school administration that their loved one has potential but just learns differently. The sad part is, this not even remotely half of what it means to be part of “that family.”
For caregivers like us, it weighs heavily on our hearts and minds when we deal with everything society throws at us. There isn’t a person on this planet who wants to be subjected to ridicule on any kind of level. It hurts us inside when society can’t accept difference and diversity, when it’s pointed out how different our family is compared to yours.
For most of us it doesn’t matter how much we promote and educate what’s dear to our heart; we will always be “that family.” People are always going to comment and or stare. We will always have that sympathetic vibe following us. But in reality, we don’t need sympathy or the “God will only give you what you can handle” talk. In reality, what we want is not to be “that family.” We want to be accepted like every other family — a family that loves each other.
I know there are people who are kind and respectful when it comes to special needs. Wading through the comments and stares, we find those decent human beings. They take the hurt out of our hearts. They remind us that not everyone is judgmental.
So I guess if we’re going to be “that family” — the ones who love each other, the ones who show the world we accept each other for who we are regardless of differences, the ones who operate as a family unit in the best way we know how — then so be it. At the end of the day, when it’s quiet, we can lament on what it means to take what life throws at us and handle it the best way we know how. We know it isn’t going to be easy; life isn’t easy. It’s hard work, but at least we have each other to get through the toughest of times. And that’s what it means to be part of “that family.”
Follow this journey on Andrea’s personal blog.