I’m going to break one of the unwritten rules of special needs parenting. I’m going to tell you the truth about our lives. I’m going to tell you the things we don’t say. The things we don’t say because we want to be appropriate. The things we don’t say because we don’t want to be judged, and the things we don’t say because we don’t want to hurt your feelings. I’m going to break the rules and I hope we all survive the truth.
When we hear a parent of a neurotypical kid say something like, “Man it’s been a rough day, I sure need a break”, we die a little bit inside. We bite our lips, we hold back tears, and we force ourselves not to take off running. We usually smile politely, nod our heads in agreement and tell some joke about how our kids flooded the bathroom too. But there are so many things we don’t say. We don’t tell you about how rough our year has been, how many different therapists we have visited, the different medications we have tried. We don’t tell you how we have depleted our savings accounts on alternative therapies that aren’t covered by insurance. We for sure haven’t told you about the pain and anguish we have felt when we have to walk away from our little ones and leave them in locked residential facilities or psychiatric hospitals. We would never tell you how we lay awake at night and wonder what will happen when our little ones are old enough to be prosecuted as “criminals” for behaviors that they have little to no control over. And we most certainly wouldn’t say “Yep I’d like a break too but no one else can handle my child’s behaviors so I won’t get a break anytime soon, if ever!”
When we read a post on Facebook that says something like this, “Parent Teacher conferences were great! My kid has all A’s, is in the gifted program, AND won an award for outstanding citizen!” we throw up a little bit in our mouth! Honestly, it’s not that we aren’t happy for your kid. We are! We will “like” your post but we won’t say something. We would never say, “I found out my kid is almost average, turned in almost all his homework, and only peed his pants three times at school this quarter.” We wouldn’t tell you about the bullying our kid may be experiencing by those amazing all A outstanding citizens, and we sure wouldn’t tell you every time we read a status like that we grieve a little bit for the children our kids could have been had they not been dealt these special needs that make their lives a bit more difficult. We also don’t tell you that our kids with “behavior problems” or “social awkwardness” probably work harder every dang day to do what comes so easily to your child. We wouldn’t want to offend you or hurt your feelings.
When a parent of a neurotypical child says something like, “I can’t wait for my kid to outgrow the terrible twos, get over these temper tantrums, and grow up a little bit”, we have to do some deep breathing before we smile and nod. We would never tell you how fortunate you are to have a child that will “outgrow” these behaviors. We don’t tell you about rages that go on for hours. We would never speak of how our 7 or 12 or 16-year-old still throws temper tantrums loud enough to break glass. Nope we wouldn’t do that. We also wouldn’t tell you how fortunate you are to have a child that can eventually calm down and speak with you about their feelings. See some of us parents have children that are 8 and still non verbal, some of us have children that can’t process their emotions at all and only express anger, and some of us have kids that cycle through emotions so quick they couldn’t identify them if they tried. We wouldn’t tell you how jealous we are of you and the normal stages your child is progressing through.
Those are just a few of the things we don’t say. Not all of the experiences above are my own. Each special needs child brings a different set of joys and challenges. But I’ve found that the emotions most of us special needs parents experience are similar. We grieve the loss of normalcy in our children’s lives, we struggle with jealousy, we wish we were busy with dance classes and swimming lessons, but instead it’s therapy appointments. We want so desperately to understand your struggles but we want you to acknowledge ours. We want you to know your audience! Complaining to a mother of a nonverbal child about how much your daughters talking drives you nuts may be a poor choice. We would never tell you that though. It’s one of our unwritten rules. One of the things we don’t say.
I broke the rules today… I hope our relationship can survive…