…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.

No FB – Days 2 and 3

[note: typed earlier as the subject title indicates, but posting majorly delayed. I blame holidays and vacation chaos.]

Classic me, I make a plan to try to post daily, and immediately skip a day. Life takes over even the best intentions.

Yesterday afternoon ended up being taken up with a grocery trip, dinner, having Jessi make cards for teachers, wrapping teacher gifts, and making reindeer noses (see below) for Jessi’s school party today. Because, in classic busy parent fashion, there’s nothing like waiting till the last minute.

A tray of small pretzels, each with a slightly melted rolo on top, and a red m&m on top of the rolo. — Reindeer Noses

After getting the kids to bed, it took me most of the night to finish up my work. But now I’m FREE!! No work for 2 weeks. It’ll be amazing!

As far as the tarot card for the day, Lovers, I honestly have no idea what it was referencing. Hardly interacted with my husband that day. I did have a crush on my mind and talked with a friend about it a little, but that was something pre-existing and the conversation already in motion before drawing the card. So who knows. Love for my children? Love for the holiday? Not typically what I associate with the Lovers card.

Today has been packing and trip prep. I was doing good until I sat down at my computer to check my to-do list…then total ADHD rabbit hole…

Update my to-do list.
Check if book my husband was looking for was available on library’s e-book lists (it is).
Message my mom about something.
Remember my list. Go back and finish checking off things that are done.
Add a few things.
Remember that we won’t have wi-fi on the plane and start thinking of prep we need to do for that.
I decided to make sure my Google Drive files were set to be available for offline access.
They weren’t.
Get to the bottom of setting that up.
Double check that it’s working right.
Realize that my old Book of Shadows file that I just imported from my old computer is still in Word doc format. I want to use that for a ritual today and know it needs updating. Spend an hour fixing the formatting because damn…whatever I did before (I haven’t used the file in several years) looks like crap!
Remember that I hadn’t posted yesterday and needed to pull a card for today and post for today.

LOL…ADHD vortex sucked me in…

As for the whole no FB aspect of things. I do think it helped me yesterday. I was the most productive and focused for work as I have been in ages…which isn’t saying a whole lot, but I’m still happy at the improvement. I also think the anti-anxiety med I’m on (Buspar) might also be starting to kick in to help. (Probably should have waited until the meds had had their full chance to kick in before cutting FB to have a better idea of which thing helped…but oh well.)

The one thing that sucked about staying off FB yesterday was finding out that a friend had her baby. I did make a quick exception to log in and see a pic and say a quick congrats, but I wanted to lurk around to see more updates. They’re a couple who posts a lot and I’m sure there’d be updates. I’m having a hard time not logging back in to see more.

Today I’ve found it an annoyance to stay off FB. Wanting to hop on to ask questions of FB about this, that, or the other thing. Wanting to see political updates of friends as we hear how Trump is going on about how a shutdown would be a long one. Which is probably better for my productivity overall, but annoying nonetheless because I want to hear about these things.

So with that said…today’s card is… [I never did that drawing]

No FB – Day 1

Person typing on macbook keyboard. Only forearms and hands of the person are visible. Person has big watch with a small ring on one hand and a bunch of small bracelets and a thick ring on the other.

Staying off FB was HARD yesterday. This morning has been hard too but for a different reason. Yesterday, it was hard because of what I described last time how I use it as my escape from work anxiety.

Last night and this morning it was hard because I use it to share the cute silly little things my kids do (like how they thought it was absolute hilarity when we were kicking the dog’s ball back and forth like a soccer ball or when Sammy started having her lovie “blow raspberries” on my belly) and my little victories in life (I finished wrapping all of this year’s presents!!). It feels weird to have no one besides my husband to share those things with. Like am I really going to text a friend to share these random things? Like sure, maybe they might come up in the middle of a conversation, but to say that out of the blue? That’s weird. Plus, then it creates an expectation of a longer conversation which isn’t what I want to do. Beyond that, who do I send it to? I’m not going to send it to all the people who might have “liked” something like if I had posted it on FB…especially because not all of them are close friends. That’s just weird, even if I just send it to my few closer friends who’d like it. Still weird to do it out of the blue. So the cute moment goes by unremarked on. To be lost over time. Because without FB’s “on this day” feature bringing up old memories, those little moments get lost in our memories. I like sharing those moments with friends in hopes of giving them a cute/relatable story that might brighten their day. I also already miss seeing those cute/relatable moments from friends as well for the same reason. I imagine this is going to make the whole parenting gig seem a lot lonelier.

The other thing I’m missing already are the political/news posts that a small handful of FB friends share. Not the ones who post the sensational nonsense, those I don’t miss. But the 5ish friends who post real links, often with thoughtful commentary. THOSE posts I miss. The posts that help me keep up to date on the things that are happening. The posts whose perspectives help me form my own perspective. These friends post things that get me thinking about the news in ways I might otherwise not. Especially one FB friend who is a journalist (doesn’t cover politics himself, but has good insight) and another one who is a person I met through Occupy who always pushes me to grow in my thinking around subjects. For example, I heard about the “sweeping” criminal reform bill the Senate passed, but when I went to find an article about it, there wasn’t much detail mentioned about the contents of the bill. I know at least one of these people would have had a good article to share. What this is going to mean is that I’m going to spend more time watching the news again…which had been really contributing to my stress before I cut back.

So, at least so far, I’m not impressed. At all. I realize the first few days are the hardest, but uugh…I really don’t see how this is going to help me.

To attempt to replace some of the more positive things I get out of FB, I’m going to try to make either daily, or every couple of day, posts here about cute family stuff that has been going on or other things I don’t want to forget.

I’m also going to take advantage of a little bit of the time I won’t be on FB to do a daily tarot card drawing. Each post, I’ll list today’s card and include a reflection on the previous day(s) card.

Today’s card: The Lovers

Parents: Get Those Hands Up

Infographic: Deaf Children are at High Risk of language deprivation

We were at an event for a local children’s D/HH program tonight. While the event wasn’t targeted at signing families, all of the families there said they sign with their children. Guess how many signing hands I saw at the event today? I saw one parent signing a couple of single words from the game they were playing. That’s it besides myself, my 2 girls, the Deaf staff member, and the interpreter that was there. Over the course of 2.5 hours. Besides Jessie, the other Deaf kids were 3, a baby (I give those parents a pass because this was all very new to them), and the other Deaf kids there were about 7-10 yrs old.

Jessi’s school had a restaurant fundraiser the other day and I saw the same thing with the few families there. Signing a couple of words here and there, but not even a full sentence, much less a full conversation. And all of the kids were at least 4 years old. I and one staff member were the only ones really signing.

Please parents, get those hands up and start signing. Your kids need you. I get that learning a language is hard. And I gave the moms of Jessi’s peers a pass when the kids were all babies because it’s tough to pick up a whole new language and that takes time. But those babies are now 4-5 years old. I’m not seeing much improvement in the parents signing skills or frequency with which they sign with their kids. And I see the husbands hardly knowing a handful of signs, and the grandparents, aunts/uncles, cousins, etc knowing virtually nothing.

I know this isn’t unusual. My own parents have only learned some and my siblings virtually nothing.

But just because it’s common, doesn’t make it OK. Our kids need better from their parents. I get that most parents don’t know any sign when their Deaf child is born. I get that learning a language is hard. But this is your KID we’re talking about. After 4ish years, you should be developing a decent degree of conversational fluency. And sure, your kid is learning English, but spoken language will never be easy, clear, or even always accurate for any D/HH person under the best circumstances. By only minimally signing, you are depriving your child of having truly strong and easy communication with you. You’re slowing their language acquisition. You’re limiting their everyday incidental learning opportunities, which can add up to huge deficits as they get older. You’re limiting their ability to learn the finer details of how social interactions should work. And more.

Communication is the foundation of a person’s success and the foundation for all their relationships. You can’t have either without solid communication skills. You want a strong relationship with your child? Sign. You want your child to have all opportunities for success available to them? Sign. Parents of D/HH kids who are learning to sign, please…pick those hands up and SIGN. It doesn’t have to be perfect. It can be slow, and awkward, and halting…but even imperfect signing is better than whatever garbled amount of English your child is able to hear/lip read any day of the week. Even imperfect signing is GOLD to your D/HH signing child.

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.