Can we please stop doing this? At all ages?
This is one of those posts that has been rolling around in my head for literally more than 10 years. This is something that was very off-putting to me as a parent but I haven’t actually talked about it much.
Let me start way back when.
Starting this journey.
So do you remember back to when your child was diagnosed? And you met other parents, tried to find your tribe?
I remember it well. And like many of you, I met lots of parents. And some groups/cliques felt like a good fit and others did not.
One particular group, there was something that was occurring sometimes and it bothered me enough to dissociate with the group.
It was the “Oh, just you wait…it’s going to get so much harder/worse!” lecture that you get.
Have you heard it?
I wanted to be an ostrich. I wanted to enjoy my baby. I didn’t want to spend time thinking or worrying about how much worse or harder my life was going to get. And here I was, in this group of people sharing the same journey. I was there for moral support and advice, and I kept hearing how much worse my life was going to be. Merely because my son has a diagnosis similar to their child’s.
I had enough on my plate as a new mom. My firstborn was still an infant and I was still trying to figure out the special needs world. Still, we were happy!
So I left.
Except for a very small handful of people, I didn’t talk to any of them.
Babies are fun. So are toddlers. Sure, we know that Early Intervention services are super important. But telling someone “Oh, it’s going to get harder, just you wait” doesn’t help a parent with that.
And, we’re back.
More than a decade has gone by and I’ve started to test the water again with that group. Accepting more Facebook friend requests, attending events and so on.
Wouldn’t you know, a few weeks in, and I hear it again. An older, more experienced mom said, “Oh, I just see all these parents with young kids and I think ‘you have no idea what is in store for you, it gets so much worse.’ ”
Seriously, already? But this time I’m speaking up.
I get it.
Look, I get it. Having an autistic one-year-old is much different than having an autistic 12-year-old. But it’s not necessarily worse or harder. It’s different. And we forget the obstacles that we’ve already conquered that have made our lives easier. Some of it is harder. It’s very easy to just pick up a 2-year-old who is having a meltdown and carry them to the car. Not so easy when that same child is 12.
But what purpose does it serve to “warn” the younger parents? Is it helpful? Does it change the child’s trajectory or outcome? Then why do it? I have wonderful memories of my kids as babies and toddlers. Why would you ruin that for someone?
I’d argue that it only crosses 2 of the 5 boxes in this sentiment. And it only half-checks them. I mean “true” and “important.” Because it’s not true for everyone, and it’s not true all the time. I’d also argue that while it might be important to you, don’t assume that it is important to the receiver.
What purpose does it serve?
Last night I had a conversation with a friend who is older and more experienced at this than I am. She’s currently going through a difficult time with her adult autistic son and finding a job. Arguably, finding meaningful, livable-wage employment is more important than my issue du jour which is Halloween.
But Halloween is important to me, today.
I can empathize and help her troubleshoot issues, and she can reciprocate, without bringing each other down. If she dismissed my Halloween concerns with a “Hmph! Just you wait until he tries to find a job, it’s so much worse than trick or treating issues!” that’s not helpful. Is it?
So why do some special needs parents feel the need to do this to others?
Why the doomsaying? What purpose does it serve? Parents don’t need this at any age or stage. It’s just a shitty thing to say to someone.
You don’t know what you don’t know.
I say this over and over as it pertains to IEPs. And seizure disorders and many other things.
It certainly holds true for special needs parenting. There is so much to know, and you just don’t know what you need to know.
But “knowing” that it could get harder, and that we might encounter new challenges? We already know this. We may not know what that will look like or how we’ll respond, but we know it’s coming. For most of us.
For some, it actually gets easier. We forget this. I just spent last Thursday with a Mom who had terrible preschool/elementary years with her child and tremendous behavior challenges. But now he’s a young adult and it’s much better for them. They were able to work through their challenges and he’s leading a near-normal life now, dare I say.
I almost did it myself.
I did! A friend (who has a disabled child much younger than mine) recently stated that she loves doing something. I don’t want to get any more specific than that. But when she said it, my initial thought was “Hmph, wait till you’ve done it for 10 years, you’ll tire of it.” Thankfully, I caught myself. After all, she may still love that activity in 10 years. Who am I to say?
My life isn’t “so much worse” or harder than it was 12 years ago. I can honestly say my life is better than it was 12 years ago.
I have new and different challenges all the time. But to say that my life is worse or harder because my son is in it? Is that really fair? Would you say that to your child? Then why are you saying it about mine?
Maybe there are special needs parents reading this who have kids who are 20 or 30, and you might think, “Yeah, but, just wait…it gets harder.”
Go ahead and think it. But you don’t need to tell me.
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