A note on Unscolicited Advice/Opinions/etc

Once we had Tiny's diagnosis of "Profound Hearing Loss" it seemed everyone I talked to had been holding back their expert advice and opinions.

Part of me was glad that people we knew were interested in what was going on with my daughter. They wanted to know how she was doing, what we'd found out, what we were going to be doing. What had caused it, most often.

The conversation I'd basically memorized from telling our close family started to happen everywhere- at the park, at the store, at church, on Facebook as friends and acquaintances found out and asked.

My mouth wore out from the telling and retelling- which is saying something from a big mouth talker like myself.

Most of the time I didn't mind. Most of the time people realized there was this tender line they shouldn't cross with their words, because really, the specifics were none of their business.

Then there were "those people." The ones that turned me into a delicately veiled boiling rage monster with things they said.

First type of person- the quiet accuser

I get it. This is an odd situation. There isn't a history of deafness in our family, she'd had 2 ear infections, but those had cleared up easily with medication. But the dirty little thing that would come out in some conversations was a subtle accusation. 

Had I or her father, her parents, caused this? Or in other words- had we abused our kid.

We play rough with our kids. Their Dad adores them, but he also quietly hoped to have sons, but when he got daughters he decided they were and are just as great and that they can be tough and love the things he loves as well. So we play rough. I stressed for a long time thinking over every bump and scuff and bruise I could remember. I remembered Tiny taking a dive off the couch into the bar of an exercise trampoline, the time her sister accidentally ran her down with her bike and she fell on the cement a little harder than a normal toddler tumble.

When we found out about her hearing loss I panicked and did a bunch of googling about hearing loss from injury. Even after we knew from the MRI that injury was not the reason in Tiny's case I was still convinced it was something I had done.

I admit this now, because I feel it was an important thing for me to come to terms with. I could have hurt my child in those instances. Those things could have been the reason she lost her hearing. To this day I play things over and over in my mind, even knowing what I know now.

Head injury can cause hearing loss. Period. Did we purposely harm our child? No. But the way people talk can make you feel like you have. With one person I had to finally say, "As far as they can tell from her MRI she has no brain damage of any sort," to finally get the look of suspicion from their face.

If you have real concerns, if you've witnessed a child being abused, please report it, but if you're just digging, stop it. Please don't be this person unless you have a genuine reason to be. I agonized enough on my own that I was the problem, that I was the cause, that something I hadn't noticed or some rough play we'd had had hurt her. I promise you, I felt guilty enough for things that I hadn't even done.

Second type of person- the Doctor that isn't a doctor

Before we found out what caused Tiny's hearing loss, we had lots of people tell us things we already ruled out. These people usually have good intentions, I think. Conversations usually went something like this-

"Are you sure she just doesn't need tubes? Are they sure it isn't fluid? I had a friend who's kid was having speech problems and they found out he couldn't hear because of fluid."

Yup, pretty sure the three actual doctors we've seen have ruled out fluid, but please, why don't YOU look in my kids ears and tell me if that's the problem.

Or

"Have they checked the shape of her ear canal? If it's shaped wrong that can cause problems and they have surgery for that now you know."

Yeah, the ENT told us this wasn't our problem after looking at scans of my kids skull and BRAIN and showing them too me... which is a weird experience watching your kids face peal away through black and white MRI images.

Or

"I bet it's something they can give you some medicine for, most likely an antibiotic will clear it all up."

Don't I wish.

I figure they were trying to reassure me, but most of the time it felt patronizing, like I hadn't already asked those things.

Third type of person- The one's who should think more carefully before speaking

These people can have the best intention in the world, and I still can't stop the feeling of my chest tightening up when I think about these conversations.

Because this is how it basically goes, somewhere near the end of the conversation-

"Well, this is tough, but there are lots of technologies out there now. So when do you think you'll have the surgery to fix her. You know with those hearing aid things that go in their head? "

UGH! and TRIPLE QUADRUPLE UGGGGH!

First of all- my child isn't broken, so therefore doesn't need to be fixed. I reeeeally had to bite my tongue on this one. And it happened more than once.

Second- Please, if you don't know what "that thing" is called, you probably shouldn't be talking about it, to anyone, but especially not with a slightly traumatized parent who's brain is not in the best of places.

Third- that is a very big and very personal decision. If we don't talk on a regular basis, if the only time we see each other is in passing at the grocery store, or the library, or the park, please just stick with "Hope things work out." Or even just ask about how she's doing and what's been working.

Forth and final person- The overly opinionated almost stranger


I learned really quickly that people are very opinionated about what we should or should not do with Tiny now that we knew she was deaf.

If these people had any kind of experience with a deaf, hard of hearing, or implanted person, they let me know just what they thought we should do, and sometimes in very harsh ways.

I got everything from "God made her this way so you should let her be this way" to "I can't believe you wouldn't consider implants in today's world" to "Cochlear implants are awful and dangerous. Don't do it. She doesn't need them."

I plan to write about our decision making process in another post, but I will briefly say this- You have a right to an opinion but what you don't have a right to do is tell someone what to do for their child or their family. Share an article, share a personal experience with/about someone who is deaf, hard of hearing, or implanted, but even if you're family or a really close friend- refrain from absolutes and make sure that whomever you are talking to knows, that while you might make a different choice than them, you will support the decision they feel is best.

It was very difficult to hold it together a lot of the time. Okay. Most of the time. It was hard to have these conversations in grocery isles and between book shelves at the library. Sometimes I wish someone would have said "Hey, I'd love to hear more, can we go out to get a drink or have our kids play?"

Even if things weren't "normal" anymore, sometimes I just needed to feel like it was because, life at this point was traumatic enough.

Observations:

I generally just nodded my head and said things like "I'll have to look into that."  or "The doctor ruled that out," or "We aren't sure if she'll be eligible for cochlear implants" and then I'd go and vent to my husband and pull out the chocolate or ice cream.

Location can really be everything as they say. If I'm with my kids in the grocery store and they are pulling things off of shelves, it might not be a good place to try and see what's up. Public places aren't all bad, but it's best if there is an element of distraction for my kids if they're with me and you want to talk. Even if my kids aren't with me, answering personal questions in the isle of grocery store wasn't the greatest thing.

The best thing I can say about these conversations is this- I've learned myself to do my best to not ask insensitive questions. Am I perfect? No, certainly not. Do I try? For sure.

I know people in general just have no idea what to say to someone going through something they've never experienced, but there are things that you can say regardless- "I'm sorry you're going through a hard time." "I don't know what this is like, but if you just need someone to talk to or cry to, I'm willing to just listen and be here for you." "I'll be praying for/thinking of you and wishing you well."

No, you can't fix this situation, or those like it/harder than it, for someone but you can certainly be there for them.