An Open Apology to a Special Needs Parent

Sorry.

I am less than perfect. I have no difficulty admitting that although, I confess, it wasn’t always so easy. But parenting does that to you. Among other things, it continually smacks you in the face with the fact that there is so much you just don’t know (and never knew that you’d need to know), as well as the fact that you’re not only not perfect, but all too often you’re just barely adequate. Once you recognize that you’ll never be perfect as a parent (and that’s okay, and likely a blog post for another day), it’s not that big a leap to admit you’re not perfect as a person.

Oh, don’t get me wrong. I try—I’m always trying. And really, isn’t it the striving for perfection that brings out the best in us?

My confession to you is that, in recognizing my imperfections, I recognize the occasions that I’ve been THAT person. It wasn’t intentional, but I’ve done it. I’ve judged you.

Not so much for the meltdown in the supermarket. Screaming children having some sort of episode–I have experience with that. I understand being mortified among strangers and also how difficult it is to not always have control of what happens when you leave the relatively safety of your own home. I’m also sympathetic to the fact that some things are just beyond a parent’s energy to deal with. My hand is raised: Been there, done that.

If I see it happening to you I will offer my help, in whatever way you can use it, though I know you will likely turn me down. We will share a smile that’s more of a wry grimace. The battle-weary always recognize one another.

But I have judged you in the restaurant and the mall, and whatever other place that you’ve sat down to enjoy a quiet moment—by yourself, with your spouse, with a friend—and you’ve handed your phone or other electronic device to your kid so that they’re quietly entertained and, more importantly, leaving you alone.

Oh yes, I’ve judged. Because, while I freely admit that I’m not a perfect parent, I do take immense satisfaction in the fact that my family can go out to dinner unencumbered by electronic devices, and actually talk to one another while we eat. My husband and I have, in the past, commented on people around us who let their kids play on their phone or tablet during the meal, appearing to not actually want them there, but perhaps stuck with them because they didn’t have a grandparent, babysitter, or other person to watch them.

I had never before considered that the device was for the benefit of the child, and not the adult. That without it, he or she might not be able to sit still, settle in, acclimate to a strange place, keep from freaking out. In essence, the device is giving your child a tool with which to self soothe. This means that, far from being a “bad parent,” you indeed have your child’s best interests at heart.

And, so, I apologize. You might not even care: You shouldn’t care about the opinions of others when you’re doing the best for your child. After all, parenting is a highly personal thing.

But I’m apologizing anyway. Because I was wrong. Because it wasn’t my business. Because this parenting thing is hard enough without having to deal with the scrutiny of others.

Because not one of us has the right to judge another.

Parenting: The Hardest Thing You’ve Ever Done.

Parenting

What’s the hardest thing you’ve ever done as a parent?

It’s not an easy question, is it? Your mind races back through so many snapshots; a fast-flipping Rolodex of moments and memories.

I remember my first (but far from only) hard parenting moment as if it was yesterday, and not already 13 years behind me. We’d just brought home our firstborn, a nearly ten-pound boy who emotionally enlarged my heart and physically exhausted my spirit. The staff at the hospital had intently focused on nursing and diapering to, I’d discover, the detriment of other little, important parenting things. Such as swaddling.

How hard is it to wrap a blanket around a newborn? you might ask. Well, let me tell you. I was close to freaking out when it was just the three of us at home–no nurses, no grandmoms–and I realized I had no idea how to wrap the baby and tuck those corners in so that the baby package stayed together. I laugh at it now–because, c’mon, anybody who has made a wonton, blintz or spanakopita can swaddle a baby–and know it’s a skill you never lose once you learn it. But there I was, an avid puzzle and game player, nearly brought to tears by one squirming baby and the blanket that just WOULDN’T STAY WRAPPED.

Of course, there have been many more difficult parenting moments in the ensuing years. Life has a way of throwing curve balls with no hints to warn of upcoming meltdowns and misadventures. Good intentions only get you so far, and usually that’s not nearly far enough. There are days when parenting is simply a minefield and you’re out there on your own, tiptoeing around, never sure if you’ll successfully avoid disaster.

Autism itself is a giant curve ball, but that doesn’t mean you can’t adjust your stance and master your swing. Parenting is compromise, revision, modification. I’ve learned to stop focusing on the home run—whether it’s the desire for a day out to go as perfectly as planned or a kid to have any interest in my favorite childhood book—and instead celebrate the times the bat simply connected with the ball. (Pardon the baseball imagery; themes crop up occasionally). After all, parenting is in the small things.

Of course, I miss those days when the worst I could do wrong was not correctly wrap a blanket, or warm a bottle, or answer a distress cry quickly enough. That 13 year-old is currently at sleep-away camp. It’s his second year and I’m the one who championed the experience. After all, children need space sometimes to discover who they are and who they can be. But I miss him. Daily. As we sit down around the kitchen table for dinner each night, there’s an empty space at the table that both tears at my heart and makes me thankful that it’s temporary. For now.

Because I know we likely have more years behind us than ahead of us in which either of our children will still be sitting around that kitchen table, telling us knock-knock jokes and testing out their newly acquired semi-raunchy vocabulary on an always-responsive and always-supportive audience. I also know that our protective control over their lives is slowly eroding as they grow and move on. At some future point, we’ll have to let them fly away, hoping to God that the world is kind and we’ve prepared them to adequately navigate through it.

The end game is always independence, is it not? The irony is that we are the ones who help them gather the feathers and teach them to make the wings that take them away from us. And that, my friend, is truly the hardest thing about parenting.

Am I Going Crazy.

Child screaming

Crazy. This word has a whole new meaning when you are a special needs parent.

First of all, crazy is a bad word. Crazy is not crazy, crazy just means you are normal.

Adjusting to autismhood is so very different than typical parenthood.

  • No one grows up dreaming to be a special needs parent.
  • No one grows up dreaming to be a caretaker for their children.
  • No one grows up dreaming about children who are non-verbal.

So what happens when the dream of a typical child is crushed overnight?

It can feel like all kinds of crazy is happening but trust me, you are not crazy. You are just adjusting to a different reality, and it takes time to adjust.

  • Some of it is shock.
  • Some of it is heartbreak.
  • Some of it is fear.
  • Some of it is love.

List every emotion you know. Those are the emotions you will feel all at once upon diagnosis. This is not a bad thing – it is just a hard thing.

For everyone it is different. Some can’t handle it while others excel.

I have seen the best parents become bad people with typical children, and the worst people become amazing parents with special needs children.

At the end of the day you are still a parent. A parent with a little more responsibility now.

Our ability to change and embrace challenge is what makes humanity so incredibly special.

You are not crazy.

You are simply a parent.