I used to work in a school where “HMP” was code for “High Maintenance Parent.” It was not a compliment. (And no, nobody ever called a parent that to their face. That I know of.) I think of being “high-maintenance” as being impatient, inflexible, and demanding. I think of HMP’s as being people who get all huffy if things don’t go their way, micromanage others, and show no appreciation of other people’s time and effort.
I don’t want to be an HMP. I try to be flexible, kind, and appreciative. Which is all great and stuff, except that as a parent you do sometimes need to be the squeaky wheel – especially when caring for kids with extra needs.
Today I called our DME provider twice to double check that someone was coming to bring Henry a new BiPAP mask. For those of you without home medical equipment needs, DME stands for Durable Medical Equipment and our DME provider is the company that provides and maintains Henry’s BiPAP ventilator and all the pieces and parts involved with it. (That’s not the name of the company, btw.)
Not last night but the night before, Henry’s BiPAP mask met an unfortunate fate: Henry ripped it off and started biting it which resulted in a bunch of holes chewed through the tube that connects the mask to the ventilator’s circuit. Um, yeah. That happened. Oops. And it happened right after bedtime, so he wasn’t able to use his BiPAP at all that night. I called the DME provider the next day (yesterday) to ask if they could bring us a new mask, and they said they would come at noon today. So, no BiPAP for nap time yesterday or for last night.
This morning Henry was super cranky. He is normally pretty chirpy in the morning, so it was unusual and noticeable. I really think he isn’t getting quality sleep (as in, not enough oxygen, not deep enough sleep because of his sleep apnea) without his BiPAP.
Since I was expecting the new mask to be delivered at noon, I stalled on Henry’s nap in the hopes that he could get a good, solid nap with his BiPAP and the new mask. He was tired and getting fussier and fussier as the minutes past 12 ticked by. At 12:30 I gave up and put him down for his nap without it. I waited until 12:45 to call the DME company and be like, “Uh, just checking if someone is still coming today??” only to be told that the staff was at lunch, and the person I was speaking to was just their answering service and didn’t have access to today’s delivery schedule and couldn’t contact anyone who would know. Superhelpfulthanks.
I debated whether to call again after 1. I was feeling irritated and anxious, but I had already called once and I didn’t want to nag. I didn’t want to be an HMP.
And then Henry woke up at like 1:20. Less than an hour nap is very short for him. He normally naps for at least two hours and then is well-rested and chirpy again. Picking him up out of his crib after a good nap is one of my favorite times of day with him. He is so sweet and refreshed and happy to see me. When I went to get him today, he seemed like he was still tired. Not well-rested. Not chirpy.
I brought him downstairs and plunked him in the play room with his brother. I was super irritated. I was saying things in my head like, What the F– do I have to do to get them to come WHEN THEY SAY THEY ARE COMING?!? And, DOESN’T EVERYBODY KNOW THAT 12:00 IS NAP TIME????
I grabbed my phone and stood there in my kitchen thinking: I’m feeling irritated, but I don’t want to be an HMP. I don’t want to be a jerk. Is it nagging if I call again? And what’s wrong with nagging when I didn’t get a real answer the first time? What’s my real reason for calling again? Am I trying to take out my irritation on them for being late? Because that’s not productive. Yeah, it’s irritating that they’re late. It would be less irritating if this was the first time this has happened, but it’s not the first time. So it’s MORE irritating! But what am I really so upset about?
Although it was unfortunate that they didn’t get here in time for Henry’s naptime, the timing didn’t really matter as we were going to be home all afternoon. What I was really worried about was that there was a scheduling error and they might not come at all. What I was really upset about was how I could see Henry affected by sleeping without his BiPAP. My reason for wanting to call again was that I needed reassurance. I wanted someone to tell me for 100% sure: We’re going to take care of your kid today.
I did call and managed to speak with someone who could contact the RT (respiratory therapist) delivering the mask. It took one more phone call from the RT to me to clarify that he had gotten called to a town far away but would still be coming to deliver Henry’s mask.
There were three things on my mind as I reflected on this today.
First, I’m glad that I stopped to sort out how I was feeling before I made that second call. If I hadn’t, I probably would have sounded as ticked-off as I felt and I probably would have been all kinds of demanding and rude: a true HMP.
Second, asking for reassurances regarding your child isn’t high-maintenance. It’s totally possible to get the information or resources or whatever it is that we need, without being impatient or demanding. It’s ok to need things, and it’s ok to ask. And I don’t need to second-guess myself out of a fear of inconveniencing someone.
And third, if I had been rude and huffy when I made that phone call, it would have been a manifestation of my worry about my kid. I remind myself all the time that when people are rude or “high-maintenance” it is something that they are struggling with bubbling up and coming out through their behavior. I believe that’s true for adults and kids. So HMP’s need a break, even if they aren’t giving anyone else a break.
So let’s ask for what we need with as much kindness as we can muster, right?
And let’s everybody cross our fingers that Henry doesn’t bite through another BiPAP tube!!
5 thoughts on “DMEs and HMPs”
I’m so glad to hear someone say that asking for reassurances regarding your child isn’t being high-maintenance. I’ve felt like I was being high-maintenance MANY times. I don’t want to be “that parent” that annoys the heck out of everyone. There have been so many times I’ve left a doctor’s appointment or something along those lines still wondering about this or that, but yet I didn’t want to call and bother anyone. I didn’t want to seem like I was putting someone else out just because I was insecure or worried about something. I’m so glad the mask came and here’s hoping for a very restful sleep for your little one tonight!
I totally know what you mean. I think it’s good to take a sec and think about what we’re feeling, and I would also hope that doctors/teachers/therapists would be understanding 🙂 Thanks.
Sounds like you’ve had a rubbish day 😦 I’ve also felt (and used to worry…lots!) that people thought I was a HMP (or “That woman” or a helicopter parent or whatever), but, you know what?, as much as I’d be absolutely mortified to offend anyone, Hannah’s needs come first. Like yourself and Sheila, I’ve worried and pondered about whether I’d be bothering people, but I think most people I’ve come across don’t mind me pestering with my concerns or queries – thankfully!…in fact a few of them actually “get it” because whilst they’re professionals, they’re also Special Parents like us too. Wishing you all a lovely and restful nights sleep…and a much better day tomorrow xx
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Yes, here’s hoping Henry doesn’t damage the new one *yikes*! Sounds like you handled a powerfully stressful situation very coolly. Good for you and you’re spot on, imnsho, about the whole ‘ask for what you need, nicely’ plan! Squeeze that boy for his Danpa!
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I get you there I am pretty sure I have been told I’m a few names especially when I went and found my advocate 🙂 hang in there looks like your doing great
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