Telling the Healthcare Provider to Stop Complimenting My Kids

 It might sound like a terrible thing, suggesting to a healthcare provider that they need to stop saying nice things about children.

Here's the context. My younger kid has a genetic mutation that results in poor muscle control. She also has poor to non-existent reflexes, which includes the urge to chew food. It isn't there naturally. But my suspicion was that there was something else going on. I had her seen by the Feeding Team at our children's hospital when she was about a year old, and it took a while to get her in. We went in and met the Speech Language Pathologist (SLP), the Occupational Therapist (OT), the Nutritionist, as well as the attending Pediatrician. The appointment total is over two days. Day one is intake and investigation, asking all the questions, and trying to decide what might be going on that is causing the trouble while eating. Day two is when they would do any actual exams, for example, a video fluoroscopy. The first time we went to this feeding team, the SLP successfully convinced me, a parent with no medical knowledge or training, that my kid with many invisible and some visible disabilities would grow out of it, and a video fluoroscopy using radiation would be an unnecessary risk. Of course, scary. So we left.

Fast forward a year, and very little has changed. We got a formal Autism assessment and diagnosis done, which helped a lot in providing therapies and things that she needed, but her eating hadn't progressed. Beyond that, she was still getting sicker than the rest of us and was struggling to recover quickly. She had an OT through our local Child Development Centre, and that OT said it's time to go back and put our foot down. So I asked Neurology what they thought. It was a resounding Yes - this kid needs to be seen, and many compliments to our OT for saying so. So, Neuro put in the referral. 

The feeding team tried to ignore it. It was put off a couple of times. The OT, I, and eventually the neurology department themselves had to follow up before we got back in. Once we did, the new team tried to do the whole appointment again. I had to answer all of the same questions and provide all of the same examples.. But this time I knew better. The nutritionist and the SLP wanted to praise us as parents and my kid for all the progress she's made, and wouldn't stop. 

The problem with the compliments from care providers is that if you indulge even a little, they keep going. When they keep going and we start to agree, the provider starts to think the kid doesn't need the services to be provided. Then, as the parent, we find ourselves all of a sudden being shuffled out the door, hearing advice to stop worrying because clearly the kid is fine. 

So I told her. I used a calm voice and clearly said, "I understand what you mean, and I know you're trying to be kind, but you need to know that to parents like me, with kids with disabilities, these are not compliments. They only ever come before my child is denied the services that she needs. If you have something helpful to provide, then please do. Otherwise, we don't need to continue this part of the conversation. We will move on now."

I didn't have to yell, and there was no unkindness. There was simply a low, firm tone and volume clearly stating my position and experience. I don't think I have seen a service provider struggle to find words the way she did. And for putting her in an awkward spot, I'm...I am a teensy weensy tiny bit sorry, sure. For having her stop shovelling empty praise on my partner, my kid, and me, I have no regrets. My kid finally received care that day, and I was right, there was something else going on. I'm glad I learned how to put my foot down without getting loud, because this time it worked.

How many others would have had that happen? Where they try, and work, and jump through hoops to obtain services that their child desperately needs, only to be told, "They're doing fine" or "They're on track to move out of this stage eventually", and are left feeling alone and helpless. Few parents know how to make this system work for their kids, and all of us are terrified that our kids will still not get care.

The publicly funded health care system is necessary. There are too many people who wouldn't be able to access care without it. Myself probably included. But the process by which service/healthcare providers have to justify the care that they provide to their patients is allowing jaded and overtired providers to leave kids in the dust. I couldn't take it anymore. I couldn't sit and waste time talking about things that they would eventually try and use to discharge us way too early. I said it had to stop, and astonishingly (disappointing as that is), it finally did.