…and he wonders why there’s a problem…

So I’m working from home in my office. I can hear Jessi crying over on the stairs, from what I could hear I think the baby gate whacked her while she was going through it or something? Or maybe she stubbed a toe on the stairs?? IDK. Not the important part. It was pretty clear she had hurt herself somehow.

I did hear Greg initially check on her to see if she was OK but didn’t really comfort her. A minute or two later this conversation transpired:

Greg: Why are you crying?!!

Jessi: I’m not going to tell you

Greg: Then go upstairs then!! Or come sit on the couch! I don’t care as long as you stop crying!!

No asking why she wouldn’t tell him. No attempt to comfort her. No attempt to talk her down. Nothing. I mean he wasn’t full on yelling, but his frustration was clear. And I know he had a headache…but that’s still not how you handle the situation.

When you let your frustration, headache, or other struggles stop you from connecting with your kid when they need your support and understanding, of course they’re going to be on guard and a bit uncooperative around you. I understand that it’s hard and it’s not always possible to contain whatever your struggle is, but you have to do that most of the time and then apologize the few times that you don’t.

When kids are hurt, vulnerable, or upset…they need compassion, comfort, and calm from us to help them balance and learn self regulate. They need our support and comfort to feel anchored, connected, and respected. Each time they don’t get that, that connection and relationship you’re trying to build is broken down a little bit.

Card of the Day: The World, followed by The World reversed

Yup, that’s right, I got the same card back to back 2 days in a row. Two days ago, my tarot card of the day was The World. Yesterday it was The World Reversed.

Typically it’s considered a happy card signifying achievement of success, culmination of events coming to a (usually positive) conclusion. Generally, it’s a pretty good card to get in a reading. To be honest, I have NO IDEA how it relates to my day 2 days ago…that day was awful. Though the reversed card yesterday makes more sense. Reversed cards for me have tended to be a version of the card flipping its meaning on its head and giving it the middle finger so to speak.

The last two days have been, quite bluntly, shitty. Sammy and I both have colds. MIL couldn’t watch the kids because she’s sick too. So I was on my first days back from vacation spending the afternoons trying to double up adding parenting on top of trying to work. Which worked about as well as you can imagine. Very little work got done.

First Sammy wouldn’t go down for a second nap despite taking an early one that morning and clearly being tired…both days. I know she’s pretty much past the 2 nap kind of days, but damn, she needed it.

Then Jessi’s school misinterpreted my call about Jessi coming home instead of grammy’s and thought I was going there to pick her up, when I really just wanted the bus to drop her off at home instead of Grammy’s. So after waiting for the bus, which was later than usual, I also had to rush over to the school to get her late as she’s standing there waiting with her teacher.

The afternoon was filled with a bunch of parental guilt of splitting my attention between kids and work and fail at both in the process.

Dinner and bedtime were pretty much a shitshow. Sammy hasn’t gone to bed before 9:30 since we got back from vacation. Last night, I tried for 3 hrs before Greg got home and took over…and of course she then was out less than 20 min later.

Oppression from the Professionals

So my daughter had her audiologist appointment today. I went into the appointment fully expecting her audiogram to show a slight regression in her hearing loss. We’ve certainly noticed a decrease in her ability to understand spoken language over the last 8-12 months.

Her previous audiogram from 6 months ago had shown a very slight progression (a 5-10 dB difference in most frequencies) from her previous audiograms, which had been pretty consistent since birth. However the audiologist refused to acknowledge it as a progression. At the time she said that one test isn’t enough to show a regression and that 5-10 dB could be just a margin of error of the test. I didn’t really buy it because that change matched up with our observations at home of her mishearing things a little more often and matches up with the genetic family history of progressive loss. But ok, fine, whatever. I could wait another 6 months for a confirmation.

Then today’s appointment showed a similar regression, actually slightly worse (5 dB) than even 6 months ago in a couple of frequencies. At birth and through her first few years, her lower frequency hearing was normal…now it’s also mild to moderate. Her higher frequencies have moved from mild to moderate to pretty solidly in the moderate range.

And yet, her audiologist is still calling her hearing loss “stable” and refusing to acknowledge a regression. Which, on a practical day to day sense, I don’t really care. I know what I’m seeing at home. We’re already signing with her. Etc. So it doesn’t impact our day to day at all other than me knowing that I need to really focus more on ASL than we have been so far.

Where her refusal to acknowledge a regression becomes a problem is in dealing with our school district. The district isn’t on the same page of us. They are fighting our desire to have her attend a Deaf school. They are fighting us on the importance of ASL for her. They continue to insist on considering the impact of progressive hearing loss an “if” thing rather than the “when” thing it really is. And at this point, I feel confident in saying that “when” has really become a “now” thing. And while we know from family history that the progression isn’t likely to happen super fast, it will happen.

We need to be actively considering progression as a factor during her IEP meetings as a “now” problem, not a “we’ll worry about it IF it happens” problem. But without the audiologist labeling it as a progression, the district won’t take us seriously. They don’t know that even seemingly small changes on an audiogram make a big difference in ability to comprehend speech. The speech “banana” as they call it is in the mild to moderate range. It doesn’t take much hearing loss to really eat away at what portions of speech a person can recognize.

Audiologists like this who refuse to acknowledge such a progression do great harm to their patients. They hinder their parents ability to get them the access and supports that they need and deserve. Which in turn can impact the rest of their lives. No, that’s not a melodramatic statement. Our educational experiences are the foundation for the rest of our lives. It’s where we build our knowledge as well as our sense of self. And those earliest years set the foundation for everything that comes afterward. You fall behind, academically or socially, and it’s really hard to dig yourself out of that hole and repair what it does to your own sense of self.

My husband is a perfect example of this. He still to this day at the age of 40 has struggles that are directly related to not receiving the supports he needed and deserved while in school. Don’t get me wrong, he has a decent job, he’s pretty smart, he knows quite a bit about a lot of stuff. But he also isn’t fluent enough in ASL to feel comfortable with interpreters or in a Deaf social gathering. His self confidence is not what it should be due to the struggles he faced…his depression and anxiety started due to his academic and social struggles in school. He views himself as “not smart” and “antisocial” and “socially awkward” when he is really none of those things, he has just internalized the oppression he faced in school and doesn’t realize that what he sees as personal failings are really a result of being failed by the system. He could have gone a lot farther with his education gotten a better job and he shouldn’t have experienced all the bullying and the social/emotional damage that did to him. But his experiences K-12 have definitely held him back from his full success and it didn’t do anything to prepare him for living life as a deaf adult.

The oppression of DHH folks is baked into the system. It comes at all angles. Too many professionals in the field are too focused on making deaf people to be as hearing like as possible instead of valuing them for what skills they do have. Even from the angle of an audiologist who is refusing to acknowledge the data right in front of her. This is why it’s such a challenge for us parents to fight the system and get our kids the access and rights they deserve.

Smart Choices with Littles and Their Hearing Aids

Handful of colorful ear molds for hearing aids: blue, purple, pink, orange, and clear with colorful glitter.

When my daughter first got her hearing aids, she was only a few months old. As soon as she was able to, she started pulling them out. She’d pull them out all the time and would rarely wear them for very long, if she wore them at all. The only thing she liked was picking out colors for new ear molds.

While this was frustrating to have her constantly pulling out her aids, we accepted that she simply clearly didn’t like her hearing aids for some reason or didn’t feel like she got any benefit from them. We respected her feelings on that front and did not force her hearing aids on her. Which we were able to do because we were also signing with her and raising her to know ASL as well as English (one of many reasons I believe ASL is essential for all D/HH kids, but that’s another post for another time).

I think it is key with little kids and their hearing aids to not force the issue. Far too often, the parents, usually at the misguided instruction of their audiologist, will push and push and push a child to wear their hearing aids during all waking hours and create a power struggle. This stresses the parent out, and it definitely stresses the kid out. Many kids who get locked in such a power struggle with their parents will “lose” their hearing aids many a time over their childhood to avoid having to wear them. My husband likes to tell as story about how he’d throw his aids under his dresser to hide them when he was a kid. My husband eventually reached a point though where he realized the benefits for his aids outweighed the negatives.

Now at 4, especially the last few months, this decision has paid off. She started being more willing to put her hearing aids in for school. Started wearing them longer both in school and then leaving them on longer and longer after school. She now will wear them all day most days. While I would have been fine either way, choosing to use her hearing aids or not, I am happy to see her choosing to wear them as it gives her the most options.

So to every parent out there who is told by your child’s audiologist that if you don’t force your child to wear their aids every waking minute, then they’ll never wear their hearing aids, your audiologist is wrong. Both my husband and my daughter prove it. I know other Deaf folks who have made similar decisions. Each Deaf person, young and old, must make their own decision about if their hearing aids are beneficial enough to be worth the hassle. Hearing aids are but one tool for communication available to deaf kiddos…certainly provide them as an option if you’d like, but don’t feel obligated to push them, and always give your child other tools at their disposal as well. Give them the ability to function comfortably with or without their hearing aids.

Along with avoiding a power struggle around the hearing aids, the other smart move we made was to drill into her head from a very young age that whenever she took her hearing aids out, she had to give them to a responsible adult (us parents, her teacher, or whoever else was watching her) right away and never just leave them laying about and to never play with the batteries. We did this both to avoid losing hearing aids if she took them out and left (or worse, threw) them somewhere and to be extra careful about her or other kids swallowing the batteries or destroying the hearing aids…either intentionally or by accident.

I think we may have done a little too well on that last point though because last night she comes into our room at 2:30 a.m. waking us up to hand me her hearing aids telling me that we forgot to take them off before bed. LOL. That totally could have waited till morning kiddo.

Non-Binary in a Binary World

Being non-binary (NB) in a binary world is a tricky thing. There are just so many ways we do not exist to the world.

I am my children’s parent, but what should they call me? There is no generally accepted good gender neutral alternative to mom & dad. There are a few out there such as “ren” or “renny” (short for “parent”), but mostly I don’t like the options that currently exist. The only one I kinda like is “mada” (combination of “mama” and “dada”). But am I really ready to fight that fight with basically everyone? Am I ready to automatically stand out that way in a society that doesn’t readily accept folks who don’t fit the binary. Is it fair to ask my kids to fight that fight when someone inevitably questions their use of the term? Or what about my nibblings (gender neutral niece/nephew)…what should they call me? There’s no gender neutral alternative to aunt.

Everyone sees a parent with breasts and that automatically means the only reasonable option is “mom”. Everyone sees a pregnant person and automatically that means the only reasonable option is “mom”. Baby groups are always called “mom” groups as if only “moms” need support after giving birth and in being the primary caregiver raising a new baby. Sure, you can still go unquestioned if you pass as female and you might even be able to be upfront about your identity, although even that can be a dicey gamble, but it’s still a clear sign that the system is not designed for you. Gender reveal parties automatically not only falsely assume you can tell gender by genitals, but they also assume that the only gender options are boy or girl.

Being married to a straight cis man, I automatically get assigned to the roll of “wife” by others and all the expectations that come with it. There’s this unwritten pressure to bond with and hangout with the wives when hanging out with our other friends and family who are in heterosexual relationships. There’s also more expectation placed on me to be primarily responsible for the kids, or at least expected to do so more so than Greg is. Yes, it’s all subtle. Yes, no one says it out loud. But it’s also very definitely there.

If you move beyond the social scene, legally speaking on basic identification forms in most states and federally there’s no way to be represented as anything other than male or female for gender. In most forms you fill out for any number of things, there’s no option other than male or female. It’s like you don’t exist. Sure things are slowly changing in some states, but not at a pace that there’ll be any federal recognition any time soon. Especially under the current administration.

In work, it feels borderline unprofessional to ask coworkers and bosses to use they/them as pronouns. It shouldn’t, but it does. Having them switch to Alex instead of Alexandra was awkward enough. Asking them to switch pronouns, especially to something unconventional, and especially to something that many (incorrectly) consider grammatically incorrect when our field and my job in part focuses on editorial tasks. It just seems so personal of a detail to reveal at work, too personal, but it shouldn’t be. I shouldn’t have to feel like I’m rocking the boat just to ask people to recognize my basic identity. Heck, I shouldn’t even have to ask at all…imagine a world where employees whose pronouns didn’t match others assumptions didn’t have to make a thing of asking fellow employees to use the correct pronouns and it was some how just built into the systems and the expectations.

And then there’s growing up…

Where you aren’t even aware that such a thing as non-binary exists. And don’t discover the concept until your mid 20s.

Nor are your parents aware such a thing exists. So when you mention to them at age 3 that you’re both a boy and a girl, they and even the therapist you were seeing at the time (some family issues at the time) correct you insisting you’re a girl without even thinking for a second that there might be anything going on other than sibling jealousy of your younger brother. This is something I just found out recently, but has really thrown me for a loop. On one hand, I know they didn’t intentionally stifle my identity, but on the other hand, it means it took me another 20 some odd years and lots of self doubt to refigure out what I already knew at 3…which is a tough fact to swallow.

Most of my childhood and teen years I had a strong sense of not fitting in and of not being able to fit society’s rules and expectations. Except since I didn’t know why so I internalized it as some personal failing. Not cool enough. Not pretty enough. Not likable enough. Not fashionable enough. Not fitting in enough even when I try. Failure. Etc. Had I known then that I was both a boy and a girl, so many things would have made so much more sense. And yes, I would have had different problems…maybe bullying, maybe being an outcast, etc. But I would have known myself and who I am and I would have known why. So at least when facing some of these other struggles, knowing why, knowing that I was being my true self, and having a way to explain it all would have made it all easier to tolerate. Which friendships did and didn’t work and why all make so much more sense. My feelings on clothing, makeup, and other issues of personal style and grooming make so much more sense. My interests as well. If that stuff had made more sense, I have better understood what I was looking for in friendships or at least getting a better idea as to why I seem to kinda confuse people and not always fit in. And knowing the “problem” would help me figure out how to solve it or how to work around it. Perhaps knowing what was going on would have helped me find my confidence and “my people” earlier and helped me have a better idea of what I was looking for in friends and romance earlier. Perhaps it would have helped me realize that fitting in isn’t all it’s cracked up to be and that “my people” are mainly not the ones who are the popular/quasi-popular “fit in” types instead of only starting to figure that out my senior year of HS and took me nearly a decade to get a full handle on…at which point I was out of school and married and suddenly making new friends was a lot harder and I had missed the boat on figuring out a few things that are important to me in a relationship.

But nothing in my childhood indicated anything about trans people, much less NB trans folks. I had to wait until I met a genderqueer person in my mid 20s before I even got a clue as to what my gender identity really was. And it took several more years of serious self doubt brought on by a lifetime of conditioning, both subtle and explicit, telling me I was a girl and not knowing there was any other option.

Although all that speculation about my childhood is just that…speculation. It’s entirely possible that I’d have lacked the guts to come out then just as I mostly have lacked the guts to do so so far now.

It’s so hard to claim a space by creating one where it doesn’t exist …