iNFORM

03/21/2026

Younger is on the main floor for a bit and our bedrooms are on the top floor, so I am using monitors so that I can hear if he needs anything. I put various quiet things on the shelf next to his bed that he can access if he is awake and waiting to go back to sleep. Trying to keep his hands busy so that his surgical wounds can heal without the interference of his curiosity.

This morning, I went down at 5:15 to help him get to the bathroom and then settled back into my bed, knowing that husband was going to help him at wake up time, since Saturday is my day to sleep in. I turned the volume on the monitor down but not to@silent, in case of emergency, and just as I had dozed off, I heard a sound that my brain was struggling to understand. I finally woke up enough so my brain could come online and figure out what I was hearing.

It was younger jamming away on a harmonica.

I guess I didn’t do a very good job of checking the area. 😆 The harmonica has already been moved to a spot where he can get to it during daylight hours.

On the plus side…he’s got some skills. 🎶

Picture is of a black harmonica that has ‘Piedmont Blues’ written on it in gold lettering, sitting in a blue case.

03/20/2026

iNFORM has something very exciting coming up but I can only tell you two things right now:

1: It’s on May 6th from 6:30-8:00pm
2: It involves a badass author/speaker/advocate who many of us know and love.

STAY TUNED….

Image description: A background of blues and purples with three different kinds of fonts/colors of text that say ‘I’m a TEASE’ with a coy emoji.

03/19/2026

I referenced this in ‘Beyond Inclusion.’ Anytime I see a disabled character in a show now, the first thing I do is google to see if the person is disabled IRL.

Audiences have fallen in love with Becca on “The Pitt” for her authentic and nuanced portrayal of autism. As an actor with autism herself, Tal Anderson brings a perspective that helps reshape how disabilities are represented on screen.

Yet according to our recent study “The State of Disability Representation on Television,” only 21% of characters on TV with disabilities are played by disabled actors.

Authentic representation means opportunity, accuracy, and giving disabled actors the chance to tell their own stories. When casting reflects real lived experience, the impact goes far beyond the screen.

03/19/2026

Alt text: Using intelligence as an insult is ableist.

Using intelligence as a defense is ableist.

We can be united against ableism without correlating worth with intelligence.

Dyslexic = worthy.
Intellectually disabled = worthy.

03/19/2026

Dyslexia is in the spotlight and as someone with dual interests in dyslexia (because older has a dx of dyslexia) and ableism, I’m going to write about dyslexia AND ableism.

Donald Trump used dyslexia as a reason that someone could not be President. At this point, I don’t feel like anyone really needs to use their energy to address his commentary because it’s almost always erroneous, inflammatory and/or self-serving and is rarely helpful in any way…but lots of people have their own commentary and I have some concerns.

On a very simple level, suggesting that having a disability automatically disqualifies you from anything is ableism in its purest and most straight-forward form. Probably didn’t even need to be said. But there is another narrative happening, as well.

There is education about specific diagnoses and disabilities that is objective and fact-based and there are explanations that use comparisons and distinctions. When it comes to learning disabilities, like dyslexia and dyscalculia, a common comparison that is made is to intellectual disability. People often say “So-and-so said that *learning disability* is the same as intellectual disability (sometimes called cognitive disability) and that is NOT true.” It sometimes comes with a defense and plenty of information and examples to differentiate the two.

Now I am all for accurate information and there is nothing wrong with information that differentiates learning disability from intellectual disability. BUT…what does rub me the wrong way is the implication that one is better and one is worse. That a defense is needed for one against the other. That an association to one is offensive and there is urgency to differentiate the two. That doesn’t sit right with me.

Learning disability and intellectual disability are, indeed, different. When one specific topic/subject requires specialized teaching/support that is different than what works for most everyone else, that is a learning disability. When across-the-board learning requires specialized support, that is an intellectual disability. A variety of tests are used to make these determinations, including IQ tests. Those are the facts.

There is no “better” or “worse” when it comes to learning disability and intellectual disability. Any socially constructed hierarchies of disabilities that exist are ableist. If the implication that you or someone you care about has an intellectual disability makes you feel defensive, dig into that.

Alt text: (the final paragraph of this post)

03/18/2026

While younger is healing from his fracture, he has restrictions. And those restrictions mean some temporary changes around here. I have more on my plate again.

Before therapy, I used to shame myself for my feelings. If I was frustrated about a change or new caregiving responsibility, I would tell myself that it was selfish to be frustrated. I am a chronic ‘bright-sider’ so I would jump straight from self-shame to ‘I’m actually lucky!’

My therapist taught me that this approach leaves no room for my actual feelings, and not feeling your feelings isn’t healthy. When you invalidate yourself, you end up feeling constantly invalidated. And when you are constantly invalidated, you subconsciously look for validation and feel resentful when you don’t get it. When you invalidate yourself, you’re putting a hole in your own bucket. You can’t fill it yourself and no one else can fill it, either.

Another part of this is me learning to tease apart the circumstance from the feeling. I think I used to feel like being frustrated about caregiving responsibility meant that I was frustrated at the person I was caring for, which is why I wanted to get away from it as quickly as possible. I now know that simply isn’t true and being able to identify and name it is so profoundly important.

Therapy helped me understand that it isn’t the circumstance itself but, rather, the impact of the circumstance on me, an individual human. It isn’t simple and it’s not only deeply personal but also highly variable. I might feel completely fine in the daylight hours on a day when I don’t have to work, and feel despair and frustration in the middle of the night when I’m struggling to pull myself from a deep sleep, and feel overwhelm on a weekday morning when I’m trying to get everything done and still make it to work on time. The circumstance itself is the same throughout and the part that is variable is me, the individual human, and what factors are at play in each moment.

The difference between just feeling the feeling, and suppressing the feeling after heaping doses of self-shame, is profound. Being able to say ‘It stinks to have to wake up in the middle of the night’ means my feelings are seen and, once they are seen, they are free to pass. When I used to try to talk myself out of them, they just swirled in my body for long periods of time after. I hadn’t allowed them to be real so they were stuck. In a real-life example, this difference manifested as me being able to easily go back to sleep at 4:30am last night, versus my old pattern of laying awake in bed with the argument between feeling and invalidating ruminating in my head.

So last night, (and the two nights before,) did not include an uninterrupted night’s sleep. I was a little grouchy about it this morning, and that’s ok. Because I was free to be grouchy, I’m now free to feel fine. Well, fine and a little sleepy. 🥱

Picture is of younger sleeping in a bed, with a gray blanket pulled up to his head so that all you can see is part of his forehead and his black hair. A long mid-day nap is our hope for him getting back to his normal sleep schedule, as opposed to thinking it’s bedtime at 4pm and then time to wake for the day at 3am. Pain
meds + surgery anesthesia + blindness = a little mixed up on days and nights.

03/17/2026

Keeping what’s most important at the center saves me.

My younger son fractured his femur on Sunday. This is his 7th fracture and his 5th since he has been in our family. There is a very hopeful optimist in me that always hopes that this fracture will be the last, so every time there is a new one, it’s discouraging. The pain and the restrictions and the recovery all seem so unfair to younger, and he has had to endure it all so many times.

Having been here many times before, though, we have it down to a science. The fast hospital packing, the parent hospital duty trade-offs, the equipment at the ready…and even younger’s food order, (pancakes, hashbrowns, bacon) are parts of a routine that we can now activate the moment that he expresses the kind of pain that we know is likely a fracture. Since it does all seem so unfair to younger, another part of our routine is that I feed him anytime he is eating in a hospital bed. We joke that he is my little baby bird. He always has the option of rolling the tray over and feeding himself, but he always opts for me to feed him. It’s a way I can build comfort and predictability into this really big thing that he is very vulnerable to but has no control over.

But…back to the opening sentence of this post. The primary thing that gets me through these fractures is keeping what is most important at the center. And this is what is most important:
1: We know how to get through this, and
2: We get through it together.

If I direct myself back to these knowings, it can help calm feelings of overwhelm and despair. It also enables me to be regulated enough to assure younger, so that once his feelings of sadness and anger pass, he isn’t worried about whether or not we can get him to the other side.

Picture is of a plate with pancakes, hashbrown patty and bacon, with my hand holding a fork loaded with a bite of pancake, ready for my little baby bird.

03/16/2026

Why is it that your kid’s emergencies happen when you haven’t showered?

It’s blizzarding here a younger fell in the snow and likely fractured his left leg. He is in a lot less pain than when he fractured his hip so I’m hoping for something less serious. 🤞

But today was a ‘stay in your pajamas because it’s not safe to leave your house’ kind of day. I packed my deodorant, so I guess there’s that? 😬

03/12/2026

Thoughts?

Alt text: Whose responsibility is accessibility?

What message is sent when something is accessible for some but not all?