My wife and I had an odd realization the other day. We realized that we were harder on our child with disabilities than we were on our 5-year-old neurotypical son. When our 5-year-old feels a little under the weather, we don’t really hesitate to keep him home from school; whereas if our 3 1/2-year-old is a little fussy or sick, we try and talk ourselves out of skipping appointments. We try and convince ourselves that he’s well enough to go to physical therapy that day.
You’d think it would be the opposite—that we’d treat our son with disabilities with kid gloves. But we don’t. And I think I know why: We’re trying to manage a strange sense of urgency.
We’ve got this gut feeling that every single thing we do matters big time and if we miss out on anything, the domino effects could be devastating.
This feeling started when our son was born.
When we got our son’s diagnosis, we instantly began figuring out what we needed to do to help him. Naturally, we had to work with insurance immediately to get a compression suit to help him figure out his body. We absolutely had to go get that swing to help him hold his head up and if we didn’t, then crawling would be delayed by months if not years. We had to go get second opinions right now to make sure we were on the right path. Everything was an urgent matter with no time to waste.
That’s kind of an unhealthy place to be, and we’re trying to do a better job of managing it. We still operate with that sense of urgency, but we also recognize that he’s a kid, and sometimes things can (and have to) wait. We also recognize that he’s on a developmental trajectory that we can guide but can’t necessarily control. Our philosophy around the house now is “delayed doesn’t mean never.” We work hard to make developmental gains, but we’re not going to define ourselves based on milestones we haven’t hit or appointments we don’t go to…rather we’re going to define ourselves based on the day-to-day effort we put in.
Simply put, I think parents of kids with special health care needs should give themselves a break sometimes. We do a lot and have a lot on our plates with appointments and caring for our other children. A week with two tee-ball games and 5 therapy sessions is exhausting, and sometimes skipping a therapy session for mental health purposes is perfectly ok.
Perhaps a sense of urgency is healthy, but a sense of panic definitely isn’t. Nor is a sense of guilt when you miss out on something. Just like we don’t define our children based on the things they haven’t done, don’t define yourself based on the things you haven’t done. You’re trying your hardest, loving and caring for your children to the best of your capabilities. That’s all anyone could ever ask for.
For more tips when checking in on your odd thoughts, check out the frequently asked questions under family support.
Finding durable medical equipment and transportation can be a challenge. But there are organizations and businesses that can help.