Recently, a long-time friend reached out to me to let me know that she was expecting a Sensory Processing Disorder diagnosis for her kiddo. She was feeling all of the things you feel when you are told your child is “different”, and she was wondering if I had any suggestions or helpful tips about how they should begin their journey.
We chatted for a good while, and it turned out that she was already aware of several things that would be helpful for her child. (I wasn’t surprised; she had always been a smart, tough go-getter.). So I put in my two cents, wished her luck, and asked her to keep me posted.
The conversation stayed on my mind for the remainder of the day. I thought of the beginning (distant now) of our journey. In my mind, I went over all of the things we’d learned, doctors we’d seen, therapy we’d done, changes we’d made in our lives and lifestyles… and it was the first time I’d stepped away and looked at it from a distance, rather than just feeling it from the epicenter. It was the first time I’d realized just how far we have come.
I’m proud of us; not just of Lucy, who has done an enormous amount of work, but of our entire family. Each of us has had to sacrifice and grow and love each other better than we might have if we hadn’t been on this crazy ride together. It was one of those shifts in perspective that all of a sudden illuminates a reality you hadn’t considered before. It was a gift.
Then few weeks ago I read an essay by the mother of a child with special needs, and the essay described her irritation when people told her that, “God only gives special kids to special people.” She knew that those folks were saying it with only the best of intentions, but the fact is that kids with special needs can be born to anyone, and some of those people go on to do horrible things to their children. I enjoyed the essay and the ultimate message, but something bothered me about it and I couldn’t put my finger on what, exactly. As a matter of fact, I thought it over for several days, and then I had another light bulb moment.
I’d said something like that to my friend in our conversation when she’d reached out to me days before. About special parents and children. Was I a jerk? I AM the parent of a child with special needs; I should know these things. Am I bothering other parents? It had never bothered me when someone said similar words, but why?
I thought again of our beginning. When we were searching for answers to questions we didn’t even know how to ask. Before we had our diagnoses, and we knew things were “off”. Then getting our diagnoses and facing the reality that we had A LOT of work ahead of us, with uncertain outcomes. So many questions. Not the least of which were the soul-wrenchers of, “why her?” and “why us?”. I wanted to feel that there was some purpose to it all, and that it wasn’t some random twist of fate. That maybe there WAS something special about me, and her, and me and her together.
Now, I have to admit that while I consider myself a spiritual person, I will rarely, if ever, bring God into a conversation. I’m not one for the white beard and the throne and the meting out of judgment. And I run in a pretty secular crowd, so no one has ever said that exact thing to me before because that’s not the way we speak. But I HAVE said that it takes a special person to parent a special child. And I believe that. It gave me comfort when I was looking for answers years ago, and it gives me comfort now during the hard times.
I think communicating it that way conveys the good intention with better words. It’s just a little shift in what can be said, but it means something different. True, anyone can have a child with special needs but instead of “have”, which is passive, “parent” can be active. Not a noun, but a verb. A doing. And if someone does a horrible thing to a child, that is not “parenting”. That is simply criminal.
Truly parenting a child with special needs absolutely requires a special person. Someone who has strength, patience, resilience, persistence, and deep wells of love for the unique person whose care they’ve been given.
After talking to my friend, I realize that she’s exactly that kind of special. She’s an intelligent, fierce mama who will be the absolute best advocate for her child. After looking back at our long, long road, I realize I am that kind of special, too. Our whole family is that kind of special, and there’s nothing passive about it. We choose it and act on it every day. It doesn’t mean we’re perfect or that we get it all right all the time, but it means we are purposefully trying hard and doing well by our special needs kiddo. Thinking it over put me at peace with my words.
So if you’re like me, and you want to give some words of comfort, particularly to someone who is just starting on their journey, I think it’s okay to let them know that you know it takes a special person to ACTIVELY PARENT a special child, regardless of how that child came to them. God, genetics, adoption, whatever. Because it does take somebody special. I don’t think I’ll ever be convinced otherwise. And you know what? If you chose to read this today, I’m willing to bet you’re pretty special, too.