What Special Needs Parents Want You to Know

Special needs parenting is not something I ever imagined before it became my story. Little to no thought on my part was given to parents with exceptional and differently abled children. As an education major in college, I always thought exceptional student education was just not my thing. I didn't have what it took. And back then? I was right. I didn't have what it took. However, fast forward eight years and two special needs kids of my own later, I've found what it takes. Or at least I usually find what it takes. You see, there is no "right stuff" to being a parent of any kid, no matter their abilities or challenges. Having children with special needs has mellowed my thoughts of the right or wrong way to do things. What works for some, doesn't for others. And it's okay. All parents will face judgment of their decisions in some form or another. We'll all get a sideways look or a blatant stare when our child is screaming in the grocery store. As parents, we ask that you don't stare, don't comment rudely, don't roll your eyes or suggest a spanking. *And for God's sake, don't ever touch that child (special needs or not) without permission!*

What we need from you is empathy, compassion, an attempt at understanding that life is hard when you're a kid and doesn't get easier when you grow up.  Special needs children are called special needs because they need more. More support, more understanding, more effort put into accepting them along with their challenges or differences. This also means special needs kids have special needs parents. So, what do we want you to know to help you understand what might help make the toughest job on earth a little easier? It just so happens, I have a list right here...

We hide things from you. (And we're good at it.)
I once spent an entire grocery shopping trip crying silently. It had been a hard week and a harder day. I was mentally and emotionally drained. I had given every ounce of patience and used every strategy in my book to control the behaviors, the meltdowns, the anxiety. And still, I felt it hadn't been enough. My husband must have heard it in my voice because he left work early and met me at the store. He kissed me on the head and took the kids without saying a word. He knew. And as I watched their backs as they headed to the Pokemon card aisle, the tears came. And they flowed for the next two hours as I numbly remembered to get the right brand of cereal and the right flavor toothpaste. No one's heard that story before. And many people wouldn't believe it. We're good at hiding. Because sometimes burying the feelings is all we can do. So next time you see someone inexplicably sniffling over the bologna, if you can't give her a smile, at least stop staring. You don't know what struggle she's got buried under the giant bag of Cocoa Puffs.

We work harder. (At everything.)
I don't mean this one to sound rude or abrasive. I don't mean it to downplay the challenges of others, because I don't know them. All I know are the parents of special kids who work tirelessly and ceaselessly to advocate for their children. They work a regular job and come home only to be on duty of a different kind. They're waking up early, going to bed late, forgetting to eat, forgetting to shower, yet still getting to therapy on time, spending money they don't have to get their kids into the school that fits their needs best. They spent all day serving someone else's needs, haven't done anything for themselves in months, and they know it has to be this way. Even if they don't like it. They have to work harder to make it to play dates, to take a trip to the store, to deal with something that didn't go down as planned. We have to work harder to make our marriages and partnerships strong. Because our kids need more of us and we sometimes forget to save some for each other. We work harder to have friends and remember it's okay to let the little things go. Respect us, please. If our kids don't "look" special needs or "seem that bad", it's because we've worked hard as a family to get where we are. The hardest thing to hear is someone who doesn't see our daily hard work invalidate it before we can explain.

We love when you learn about us. (And teach your kids.)
My son has Asperger's Syndrome. Both my kids have sensory processing disorder. My husband has a cousin who has asked us what life is like for them and how we deal with it as parents. I love her questions. She truly wants to understand their differences. I can't begin to explain how much it would improve my children's (and my own) life if everyone weren't afraid to politely ask, "Sensory seeking behavior? What's that like?" We crave your understanding. We don't want or need pity. We don't need you to do things for us. (Unless you're sending coffee or wine, then by all means -bring it on!) We simply want you to see things from our perspective. And a good start is learning our story. What do our kids' diagnoses mean? How does it shape them and make them who they are. Only through educating yourself can you try to see from their perspective. One thing I absolutely love about sitting in the occupational therapy waiting room is watching my kids intact with kids who are different from themselves. They don't see diagnoses or labels. They see kids. Kids like them, but a little different. And they already, at four and seven, have learned that the differences don't matter. We're all just people and every person is different. As my son said recently, "There's only three types of people. Babies, kids, and adults." The world would be such a beautiful place if everyone else could think the same.


We are happy. (Even if it looks different from your happy.)
We live life to the fullest of our abilities. It may not look like your life or your abilities, but we live it. We are happy. We celebrate moments other parents will forget. I stood in a dollar store and cried tears of joy the first time my daughter said a three word sentence. My heart leapt with excitement when my son asked to leave a function at our local community center because he was able to verbalize his sensory overload! It took seven years for him to recognize that feeling. I was ecstatic and bubbling over as his dad took him to the car to watch Jeff Corwin videos on his tablet instead. We are happy with three hours at a local amusement park, even if we only ride one ride, because it means they knew their limits and were able to transition without a meltdown. We're happy staying home in our pajamas because it means a day without stress and no need to spend the next day in detox and recovery mode. We might be happy that we married such strong, loving people who will never let us down. We might be happy to have friends who get us, family who love us, and children with such dazzling smiles. Our happy is different, but so is our parenting. We're okay with that and you should be too.

The bottom line is, parenting is the toughest job there is, no matter what challenges you or your kids face daily. Respect the journey of others because most likely it won't look like yours. A journey that's different from your own is still valid, still worthy, and still needs to be appreciated. None of us have the right stuff, but we're working on it.