I ignore it as much as possible, but every once in a while I stumble across a conversation involving this awful competition. It goes something like this…
“My child has hypotonia…”
“Oh, so does mine! She also has a trach and a gtube”
“Well, he doesn’t just have hypotonia. We’ve been struggling with…”
The discussion continues. By the end, the entire world knows both children’s full medical history, even if they don’t know their first names. What on earth is the point?
Every morning, the first thing I do is check my Facebook for new posts from friends to make sure none of their children were taken to the emergency room overnight. I’m up at 4-5am EST and so I’m frequently the first to find out about a middle of the night emergency. It’s common if someone has gone to the hospital, that they’re still waiting for a room when I wake up. I can help them feel less alone while they wait with little or no sleep to be transferred upstairs. The fact that this happens frequently enough it’s worth checking every morning tells me ALL of our kids are struggling. It doesn’t matter which one is struggling more.
Aside from that, who is doing worse frequently changes and has little to do with the number of diagnoses they have assigned to them. A child with hypotonia may be doing great, but has a bad fall with a nasty recovery. One of the kids with a feeding tube may be up to the 50th percentile, but next week they catch the flu. By the time all is said and done, they’re back down under the 10th percentile. A little girl goes into the hospital with a fever and ends up there for weeks struggling with sepsis and nearly ending up on a ventilator (this one actually happened recently, I kid you not).
There’s no need to make a contest out of this already difficult journey. If you don’t feel like you belong in the special needs community and need to justify being here, just give it time. Once your turn comes to go rushing to the hospital rest assured, the doubt will be gone. If you never end up in that situation, I still fully embrace you as a member of our community. I would much rather you join us and never end up in that situation than not and have no idea what to do when you get to the hospital in the middle of the night and no one is picking up the phone. We can help, we’ve been there, and one of us is ALWAYS awake managing pumps, soothing troubled tummies, or cuddling our little ones through illness.
We’re a community. There’s no need for contests. Competition just makes it more difficult to reach out for help when you need it most, and that’s the last thing any of us wants.
I’ve had those conversations, but I’ve found that they’ve been more about finding a commonality than a competition. We start of listing our concerns about our kids, and by the end of the conversation we’re swapping tips that helped us out and recomending programs or exchanging information about procedures.
In my case, I’m solitary when it comes to special needs kids. I’ve tried setting up parent support groups, and participating in events that would bring parents of kids with special needs together and it just never meshes for me. But for those brief moments while in a waiting room, while I’m with that other parent, I’m with someone who gets what goes with having a kid like ours.
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I totally agree that there are a lot of conversations about our kid’s issues that aren’t competitive! I’ve been trying to think of what differentiates a supportive conversation from a competitive one and I’m having trouble. I can’t quite put my finger on where the line is, so it may simply be a grey area for me. I will say I’m confident I can tell the difference between the two though I doubt that inspires much confidence when I can’t identify where specifically one becomes the other. I’ll have to fall back on, “I know it when I see it.”
Meeting other parents in person is amazing. It’s extremely difficult to keep in touch sometimes because of the hectic nature of our lives, but definitely worth it if you can manage. I have one or two women I try to touch base with every few months. It’s becoming more and more difficult with my son’s gross motor delay, but we’re still trying. I’ve never been able to make a group meeting work either. I think it’s just a scheduling problem for us.
I’ve been thinking about the difference between a competitive conversation and a supportive one, and I think it’s hard to pin point because it might just come down to tone and body language. Which is difficult to explain. ‘Well he tilted his head to the left a bit, raising his chin to indicate a superiority’. Gah, impossible to get across.
When my son was younger we were able to get out to meet up in support groups, but now that my son is 16 it’s harder to get someone to supervise him while we’re out, so my husband and I tend to take advantage of that free time by having date nights. When my other two children were younger we’d take them out for a special time, so they’d get the support and attention so that they didn’t feel like they were second rate because of all the time and support their brother needs.
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