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Pause

photoSometimes you just have to take a break.

For special needs families, it’s easy to get lost in our days. We face the same challenges as most families, and then there’s the rest of it. Schuyler is proud and stubborn, and she doesn’t always ask for help very easily. This has made her eighth grade year especially challenging. Her band class has gotten harder for her in ways that sometimes make it less enjoyable for her than it probably should be. Cheerleading (or “cheerleadering”, as she puts it, which is too cute to correct) is fun for her, but it’s also a microcosm of all the social complication that accompany teenaged girls and cause the parents of boys to say “I’m glad we have a son” even as he sets fire to his room. And like a lot of girls her age, she’s beginning to notice boys in ways that both consume and confound her.

But Schuyler’s social awkwardness is compounded and amplified by the fact that she can’t communicate with her classmates with ease, and doesn’t follow large swaths of their conversations. She is having some real successes in an inclusive academic environment, but navigating the already treacherous waters of teenaged life overwhelms her very easily. She wants to be like everyone else, and god, does she try. But her classes are challenging her, I mean REALLY challenging her, and the unspoken, unforgiving rules of middle school lay just beyond her understanding.

Of the challenges for her parents, I will simply say that she doesn’t walk through those experiences alone. And as those challenges diminish her from time to time, so do they wear us down, too.

So sometimes you just have to stop. Your all-encompassing love sustains you through the hardest times and it’s recharged by successes and moments of clarity, but love isn’t enough, not always. It’s the most rewarding life you can undertake, and you will grow in ways you can’t have imagined at the beginning, but sometimes the experience of advocating for and taking care of a special needs child feels like stepping out into a maelstrom. Every so often you have to hit pause, or you will surely be swept away.

We piled in the car and headed south, to San Antonio and friends who have become family, the friends who will take over the care and feeding and watering of Schuyler should tragedy by accident or mutual homicide claim her parents. We spent the weekend attending a high school football game and a ridiculously charming Peanut Festival Parade, and hanging out eating good food and drinking many adult beverages. Schuyler didn’t worry much about using her speech device, and aside from occasionally studying for two tests that will surely restore our anxiety levels later this week, she didn’t put much thought into school, either. We watched our band director friend’s high school band and tried not to think too much about Schuyler’s impending transition to a troublingly overpopulated high school where the cracks waiting to swallow her up are many. We didn’t forget our worries, but we pushed them back a little.

Special needs families understand how important these pauses can be. For many of them, those pauses also come far too infrequently; for some, they never come at all. The waves crash against the cliffs of their lives, never ceasing, never breaking their families but perhaps slowly, incrementally wearing them down. If you are the parent of a kid with a disability, you understand how important it is for that child and for your own advocacy that you find those opportunities to stop and breathe. If you’re the friend of a family like that, I hope you understand just how much you can make a difference. You don’t have to provide a weekend away. Respite can be simple; an afternoon at a coffee shop, or an evening of babysitting while parents go out and pretend to be regular human beings for a few hours.

Not to run away from the challenges. Just to hit pause, and renew.

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