The Odyssey: Parenting. Caregiving. Disability.

How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that?

It's gotta stop!

There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away.

If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude!

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

There are very few studies on how women tolerate pain. This 2022 study explains that women were excluded from studies because of assumptions that potential hormonal changes could impact reliability in pain ratings. Yet new research shows those assumptions are false.

While there is evidence that period pain is comprable to the pain of a heart attack; renowned gynecologist Dr. Jen Gunter warns that waiting for excrutiating chest pain to tell you you're having a heart attack is dangerous, especially for women who often report having no pain with their heart attacks.

Research continues to show the importance of limiting screen time for children.

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring all while tackling the tough stuff, too. The thing is, parenting is tough. Caregiving is tough. Middle age. It's brutal. So many of us live in the. I just need to get through this week mentality and that is bunk.

If we think that way, we're going to be white knuckling it through life until we die. There's always going to be something. So rather than waiting for the tide to turn or the pendulum to swing, it's time for an attitude adjustment. I'm going to get deeply personal here because I know the impact it can have. A good example of this is my first child's birth story.

Arlo's movement was slowing in the final weeks, and folks around me dismissed my concerns, telling me that it was natural to happen because as the baby grows, there's less room for them to move. But at 39 weeks, Arlo's movements were barely noticeable, and when he did move, it felt weak. So I went to the hospital and was immediately prepped for an emergency C-section.

My doctor later told me if I hadn't come in, Arlo would not be here. A few years later, I was catching up with a dear friend who thanked me for being so open about all those scary details. She told me that because of me sharing my story, she didn't second guess herself when her first child's movement slowed in utero.

She and her son are alive and well because they got the help they needed. Now, fast forward to modern times, and I have a new story to share that hopefully will help. Just after Thanksgiving, I noticed a red swollen mark on my calf and it was a little bit sore. But it's common for ADHD errors to get random bumps and bruises and not remember how it happened.

So I looked at it and I chalked it up to me overreacting and just powered through. I mean, after all, my son Arlo had a point with his hematologist, which is a four hour round trip away. And that was, I think, the following day. My middle guy, Emil, had a well visit and a band concert that week, and he had his own ADHD evaluations throughout the month of December.

And my daughter had an appointment with their pediatrician that week, which resulted in a referral to a behavior as the following week to help with ADHD strategies. And I knew if I pushed any of these off, it would be problematic later because like most moms, kids come first and like those hard weeks that stack up on hard weeks, I wanted to just get through that week, so maybe the next week would be easier.

Now, let's not forget, December is magic, making time for many parents. And not only am I the primary caregiver in my home, I'm the primary magic maker, too. It was a lot. And I'm even leaving out some of the hardest stuff because this is really not my space to share everything. So my body was buzzing with anxiety. I could feel it.

I would have to really focus on breathing. I just just felt just a mess inside. So the month went by, and suddenly Friday, December 20th, arrived and I felt relief. I didn't have any work deadlines. It was the last day of school for my kiddos before their winter break. Finally, I could just take it easy, maybe do some last minute holiday stuff and get ready to just be festive.

That morning when I was getting dressed, I looked down at my calf and instead of seeing that red bump, which I pretty much forgot about, I saw a faint reddish brownish line and that freaked me the food out. It freaked my partner out. It freaked the folks at Urgent Care out. And they sent me to the E.R. where I sat for hours, eventually crying because I needed to leave to pick up my kids from school.

And long story short, I was walking around with a large blood clot in my leg for a month. I was shook. What's wild to me is that I didn't even notice the pain in my leg until I was asked about the pain level. I'm a 47 year old perimenopausal woman. I hurt everywhere and no one seems to care.

So either I buried those feelings in my leg or I massed them. Whatever it was I didn't allow myself to feel pain until I was told that the pain in my leg was normal. I was pushing every feeling and instinct for my own well-being aside for a month to attend to everyone else's needs. And I think it's important to acknowledge that and recognize that we have the ability to do that to the point of unintentional self-harm.

And it's not all that uncommon, especially for women. I mean, did you know that menstrual cramps can be as painful as a heart attack? I'll put the actual medical research in the show notes. This is not an exaggeration. A man clutching his chest and falling to the ground is what we often kind of envision when we think of a heart attack.

And that's the kind of pain that many women work through every single month. And I mean work through. They go to work. They do their duties. Maybe they do a hot pad and take some pain meds, but they're functioning in a high level of pain. Think about that. There is very little scientific evidence about the differences between how males and females experience pain because women have been excluded from countless studies, including those surrounding pain.

And there's more about that in the show Notes, too. All of this brings me to the attitude adjustment that this medical scare triggered as Peter Finch's character, Howard Beale, declared in the 1976 Film Network. I'm mad as hell and I'm not going to take this anymore. The shifts been brewing for a while. My day in the emergency department just set it in motion.

When asked to describe the pain, I said what I said earlier in this episode, I heard all over. So it's hard to tell. And I repeated it whenever they asked. I would mention that if childbirth is a ten and this is a seven, what does that even mean when we're looking at your pain scale? All of this literal pain and on top of it is the mental load of being a parent and a caregiver.

Being the captain of a ship that never stops is unnatural. And that's why I'm starting this year out focusing on removing every pain point possible. What's a pain point in this case? It's those everyday struggles that just drain you with all the stuff out of control. I'm looking for the things in my life that I can change both the immediate and the long term.

These pain points can range from something as simple as buying glass bottles with lids. Right? Because I don't know about you, but no one in my family seems to understand how to properly cover food and put it in the fridge. And so I'm throwing away wilted lettuce and dried poultry cheese that's rock hard. So the results are spotty with those lids.

So far. But it's early and I'm hopeful. Now, screens, on the other hand, are one of the biggest stressors in our house. Every one of my children is hungry for a screen of any kind. Virtually all of the time. It is a constant struggle that escalates into battles nearly every day. So removing this particular pain point is a work in progress.

If the current time limits and passcodes and remote control hiding systems fail or become too much work, I have two more slightly restrictive backup plans that I'm going to implement. The first would be installing a new router because you can find some with robust parental controls that have separate networks. So I can just turn off whatever network I assign to my child or children if they're abusing their online time.

And if all else fails, I'm going to remove the device you can request with your school that your child doesn't bring their Chromebook home in middle school, whatever school, and if it's not necessary to do schoolwork, I don't want to hear. And that's kind of where we're going to head if we have to, because I don't want the fight.

And while I want my children to be able to self-regulate when it comes to screen use. Research shows that developmentally it's incredibly difficult for kids, tweens, teens and young adults to do it responsibly. Now, add neurodiversity into the mix with that easy dopamine rush that you get from all of that digital stimulation and you realize that perhaps you're asking too much of these young minds.

If adults have a hard time managing their screen time, how can we expect kids to be able to do it? And if you have any secrets, they're by all means share and I'll pass it along in a future episode. Managing expectations of ourselves and others is another area where an attitude adjustment might be in order. After all, my favorite equation is happiness equals reality minus expectations.

A great way to alleviate so much stress and frustration is to stop expecting others to fill in the blank. Think about it. Kids are not going to magically start doing their chores without reminders. Partners aren't going to be able to read our minds and do what we wish that they would do without talking about it. And we're not going to be able to break every single one of our perceived habits overnight or even by the end of the year.

We need to stop expecting these things of those around us and of ourselves. My own home is a really good example. I have busted my butt over the years trying every visual schedule and first and strategy out there. Guess what? Even with the best tools, most parents and caregivers are still going to need to remind their children to use those tools.

Human prodding is still necessary, and this is especially if disabilities. In the next hour. Santa delivered this beautiful fancy skylight calendar to our home and this bad boy. It will link to our Google calendars. It has a short list for as many people as you want to add and a reward chart to go with that. It has meal planning options.

It's amazing, but it's not magic. An adult still needs to encourage the kids to use it. An adult still needs to hand out the rewards. We've got to stop expecting adult level compliance from children. It's just not going to happen.

The biggest impact we can have, though, lies within us. Most of us are harder on ourselves than anyone around us. So I want to point out a really good starting point, especially for caregivers. Take a very close look at the hours in your days and what your day is filled with. Time and time again, I end most of my days disappointed at what I was not able to accomplish.

And then I'm overwhelmed about what's on my plate in the coming days because of that. First off, it's important to point out that getting an ADHD diagnosis a couple of years ago has helped tremendously in understanding why this is so hard for me. My mind is almost always working in hyper drive mode. Now you tack on the caregiver component of our lives, and in my house again, all three of my children, they have ADHD, which means I'm helping them manage their time, their list, their clothes, their school work, you name it, and doing this in a calm, supportive way with so much emotional dysregulation.

And each of us is not just challenging, it is draining. There's only so much patience that anyone can have on any given day, let alone when you pile all those other stressors on top. So I started looking at each hour of my day to understand why it feels like I can't get anything done. And after doing this time on it, the problem was obvious.

I was trying to do the impossible. And this is a level of impossible you can't see just by looking at my calendar. But it's just based on everything else that happens in our lives that go unseen, whether by our partners or our supervisors or our colleagues or our friends or our family or our children. Try it. Track your daily activities for a week and test this out.

Because my issue with time management is not due to scrolling through social media or watching TV or playing games on my phone or texting friends. My workday is interrupted nearly every day because of medical appointments or calls from the school nurse or because my son's hearing aids are missing and I need to bring them in, or because someone forgot an instrument, or there's an IEP meeting or a five or four meeting or I have to do paperwork for Arlo's waiver, or there's an appointment with my daughter's behaviorist, or there's a dog training session to get our pop up to service dog status.

I mean, every day there are things outside of my control where people need me and it pulls me from all the other things that I'm supposed to be doing. And the caregivers, I know we don't get personal days. If we have a smidge of time that isn't booked with caring for somebody else, then we just use it for the backlog of stuff piling up when we're caring for somebody else.

And I don't know about you, but my backlog is turning into a massive mountain that follows me wherever I go. It's like a Tetris game that I look at and see if I can take something out and get it done without triggering something else to collapse and pummel me like an avalanche full of menial tasks that never stop coming.

And I can't stop this avalanche. I set up all the supports that I can afford around me, and so the only thing left to do is to adjust my attitude. And so the first thing I started doing is to embrace that I am just going to be late. I hate being late, but I can't help it in most cases.

And I actually want to thank Mel Robbins for this one. Another podcaster, the author of the book Let Them, which I've been listening to, and it's freeing. I don't normally jump on a book bandwagon, but so far I'm more than halfway through. And a lot of it just just lets you feel free. It's the idea of let them is that you can't control what others think about you, nor should you.

And it's true. So as much as I hate being late, it's out of my control. And when I try to push everyone else to be on time, the commotion and stress and frustration it causes, it's not worth it. One appointment bleeds into the next. A five minute task can take 30. And suddenly I'm leaving for my 430 meeting at 445.

I still hate being late, but instead of dwelling on it and feeling terrible about it, I'm going to apologize, move on, and chalk it up to being a really difficult time in my life. Speaking of all those appointments and meetings, enough. One thing I've learned after 14 years of being a parent caregiver is that no one has all the answers.

Not doctors, not therapists, Not teachers. Nobody, y'all. I wish I could have recorded my daughter's session with that behavioral therapist in December. This professional was trying to reason with Maya about a reward system to help with the basics of getting to school each morning on time. And it's something I've been working on since Maya was three. To no avail.

And so when the therapist asked Maya about a reward that might be meaningful, Maya replies, $1,000,000. And Maya was dead serious. And as the therapist pushed for more reasonable options, Maya didn't hold back and kept throwing out really difficult rewards to fulfill, making it a really difficult system to set up. And in that moment, I just gave up.

And I observed my gorgeous Pharrell baby make this poor person work so hard for every minute that she was putting into this session. That's the thing about parenting. Everyone has the answers. There are books. There are professionals. There are fellow parents. But you know what? All it takes is one kid that doesn't fit into a mold. And this is why giving zero FS is a shift that pretty much every caregiver needs to make.

Caregiving is such a unique existence. Especially if you have a loved one with invisible disabilities. The judgment is everywhere. Family, friends, teachers. People observing in public. If I try to talk about any of this stuff with someone who isn't a caregiver, nine times out of ten, I'll get the whole well, my kids would behave that way if I let them.

Or you just need to blah, blah, blah. Or you should just blah, blah, blah. Or why don't you try. Bla bla bla bla bla bla bla bla bla.

If only it were that easy. And also for you for putting this on me because I am trying so hard and you saying that it's my fault or it's my parenting. Well, you don't know me then. And I'll tell you what perimenopause is helping me give far fewrer if you seek Amy’s; Anyone remember that Britney Spears song?

Anyway, when my blood clot was first discovered, I was ordered to stop hormone replacement therapy, and suddenly my hot flashes were full on sweats. I mean, last night, my sweats and chills hit so badly I had to lay on the ground. I could barely breathe. It was it was something. And I think as women, we laugh this stuff off and we have heard other women in our lives laugh about it, but it's no joke.

And when you're living in it, it is absolutely miserable and distracting and at times unbearable. My brain and body are going haywire. And it last three years. So with all this, I've even given up worrying about my potty mouth. I've tried to cut back on swearing for years, but right now I'm embracing my inner Roy Kent and letting the F-bombs fly freely.

Except I'll bleep them for the podcast. It's funny, my dad hated swearing, and if he were buried, he'd be rolling in his grave. I'm not sure what the equivalent of that expression is when it's a box of ashes that my mom keeps on the coffee table next to her. Maybe he's scattering in his box. I don't know. But I like to think that if I could talk to my dad, he'd give me a free pass for sure, on the swearing. Perhaps that's the biggest adjustment I'm making in my life. Finding joy and kindness wherever I can until I'm able to produce my own Roy Kent fresh in my mind. Because my 12 year old and I are watching Ted Lasso together. It's my second time and his first and we just finished season two of Shrinking by the same creators, by the way.

These shows just ease my mind and they soothe my soul. You know those periods of life where you're pretty sure things will be okay, but it's just really hard and there's nothing tangible to look forward to. No getaways, no celebrations. You're just getting by. Simple things like a TV show to look forward to that you can talk about that makes you smile.

It's a pretty beautiful thing. The arts are there for a reason, right? But these two shows in particular touch on mental health in a way that not many others do. They're fictional examples that remind you that even though folks around you seem like they have it all together, they're going through their own stuff, they're figuring it out just like we are.

And it's messy and it's embarrassing. But we're all here getting through it together. Just look for that light at the end of this tunnel and keep on keeping on.

Thanks for listening. Be sure to review, subscribe, like follow or whatever it is you need to get a ping when the next episode drops. And while you're at it, drop us a comment and let us know what you're watching these days. This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.