What We Need

The parents of special needs children have a variety of support systems, and a diverse bunch of needs, as different as the disabilities possessed by our kids. In our community, the idea of the “special snowflake” takes on a different, harder meaning. Even among communities of kids with the same diagnoses, the range of clinical manifestations and emotional states is such that commonalities can be hard to identify.

Likewise, the people we have supporting us varies wildly as well. Some have good support teams in their schools or hospitals; others are fortunate enough to have extended family that both understand and care. To try to list the things we all have in common is largely an exercise in frustration, as anyone who has been a part of the disability community for any time, particularly online, can attest.

And yet, there are needs we have that are universal.

We need people in our worlds who understand how complicated our children’s lives can be, and how complicated our feelings about those lives can be as a result. Parents of special needs kids need to be able to work through those emotions without feeling like they are pressed under the slide of a microscope, or sitting on the witness stand before a court of judgment.

We need friends and family who understand that the scale by which they measure their own kids’ accomplishments and progress don’t apply to ours, and perhaps aren’t terribly helpful to their own kids, either. We need people around us whose empathy runs deeply enough that they don’t assume the worst of a parent whose kid seems out of control in a public place, or appears too old or too big to be riding in a stroller. We need people who don’t just understand how the seemingly small things can represent a triumph for our kids, but who genuinely celebrate those triumphs.

We need at least a few friends and family who know and accept that we’re going to screw up, sometimes badly, and who can step in and help make things right, or at least help make our fumbles feel a little less like bitter failures.

There’s a great deal that we all could use from those around us who love our kids and want to be a positive presence in their lives. We don’t always know how to ask for help, nor do we often admit openly when we’re in over our heads. That high water mark is different for us all. Some lucky parents might never get there. Others perpetually exist in a place of quiet desperation, and the people around them never suspect a thing, not until they really pay close attention. Sometimes you have to really be watching for it. Most of us won’t ask for help very often. Very few of us will ask a second time.

As I said, our needs and our own strengths vary wildly from family to family, and even between individual parents. But honestly, there’s one thing we all need, something that we’ll never ask you for, something that we probably don’t even know we need until we get it once in a while.

We need you tell tell us that everything is going to be okay.

And we need you to mean it.