autism · Down syndrome · family · parenting · special needs parenting

Let’s Talk About Self-Care

It’s a topic I go round and round with; self-care.

I love the idea of self-care, putting my oxygen mask on first makes perfect sense, if it was actually that simple. The problem is that there is nothing about parenting a child with complex developmental, behavioral and medical needs that makes the oxygen mask analogy work the way it’s suggested.

Having worked with oxygen as a paramedic, if the person receiving it exerts themselves, they need more oxygen. The delivery system is cumbersome and the person is tethered to it in order to get the benefits of the blessed gas. That makes for serious limitations. To put on your oxygen mask adds the burden of obtaining and maintaining the equipment necessary to do so.

Today is the first day in months that I haven’t felt like I have more to do than I could possibly accomplish. Sleep was pretty decent last night, I was only up once with Ben, and this is the first week of 2019 when Ben has no appointments and, unless something completely unexpected happens, no snow days. That means I have a whole week to get work done, work that has been waiting since last year to be touched.

I’ve often live in survival mode. Treading water so to speak. Prioritizing self-care feels like lugging around an oxygen tank in order to keep my oxygen mask on. If you have never tried metaphorically wearing your oxygen mask while treading water, I don’t recommend it.

Like when you’re broke and need gas to get to work to get a paycheck and you put in only as much as is absolutely necessary and just pray it gets you through the week.

Or when you need to get groceries and have to wait for the money to hit the bank account so you make do with leftovers and the odd items at the back of the cabinets for days on end.

Most people have been there (if you haven’t, stop right here and steep yourself in some serious gratitude), and parents, especially moms, of kids with complex needs, live there when it comes to meeting our own needs.

I do what I can. I get outside to soak in sunshine, and field the never-ending phone calls from doctors, teachers, insurance, and more on my little outing.

I take short little trips to see family and get away, clearing my schedule and notifying as many people as possible to not contact me. To do so I have to cram in impossible amounts of work before and after and still manage urgent communications, which often have the bonus of being at odd hours if I get to visit another time zone.

Please hear me, I despise complaining. Kvetching feels dirty to me. I strive for resilience and optimism and strength. I bathe in gratitude for what we have on a moment by moment basis. I find joy in the little delights of the day, like when my pileated woodpecker friend visits my suet feeders or the belly laughs over the antics of my kids and pets and even my husband. There is so much that I do to keep keeping my head above water.

I’m not a whiner.

But as I tread water and continue to do everything in my power to keep my nose out of the water, my oxygen tank was kicked off long ago as more of an anchor than anything beneficial.

Having the resources for self-care, much like having the bank account that allows you to fill the gas tank all the way up every time it’s low and load up a shopping cart with goodies as the need arises, is just not something that everyone can just do. Not everyone can find the time, money and energy necessary to take care of herself.

And being told how important it is doesn’t help. I’m not diving to the bottom of the lake to retrieve my oxygen tank, that’s precious energy I can’t afford to expend. Every single fiber of my being is dedicated to staying afloat.

I like to wrap up posts neatly, whenever possible on a lighter note. I’m not comfortable being this vulnerable and blunt. It’s nice to leave my readers with a warm fuzzy for their day. But this is truth. Not just for me, but for so many of us. We’re out here just keeping on. I just want you to take a minute to see us.

sleep

My Life With Super High Sleep Need

Looking back over the years, I cannot remember a time that I felt ready to face the day, any day, with less than 8 hours of sleep under my belt. And to be at my best, 9 (or more) is where it’s at.

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What a good night’s sleep looks like for me. (Early morning get ups courtesy of Ben).

I have high sleep need.

And in case you haven’t noticed, our society doesn’t exactly laud great sleepers. In fact, in an era when self-care is the topic du jour and we, especially women, and even more so mothers are aware of how important it is to fuel ourselves to avoid burnout, sleep is rarely a part of the conversation.

When you require significantly more sleep than average in a world where 60 hour work weeks and productivity rule, well, you can feel like a loser (at least I do).

It has taken awhile for me to reconcile the fact that I’m never going to be one of those people who can be productive late into the evening and then get up early the next morning and hit it hard again. There was never any all night cramming for exams because I knew my rest was much more crucial than a few hours of additional review. And at this point in life, when many parents have no problem staying up until midnight or later waiting for their teens to return for the night, I am long since in bed before my daughter rolls in at night.

I have learned, when vacationing or doing fun things, that if I let my FOMO (fear of missing out) trump my sleep it ends in disaster. More often than not it’s a real bummer to choose between dedicating well over a third of each day to slumber or spend the time you didn’t spend in bed feeling like dog meat.

I have long envied people who thrive on 6, 7 or even 8 full hours of sleep, and wondered if there was some kind of secret element I was missing that prevented me from doing more with less in the rest department. I played with essential oils and supplements, both for rest and for daytime wakefulness and wasted hundreds of dollar. I used caffeine to offset the effects of my less than adequate time in bed and wound up jittery but still groggy. I have experimented with pillows and mattresses, trying to find the Holy Grail of comfort that would somehow make my sleep more efficient so that less would feel like more.

Nothing, absolutely nothing is a sufficient substitute for 8, 9 (or even more) solid hours in bed.

At the ripe old age of 44, after living this way for as long as I can remember, it stands to reason that it won’t change any time soon.

At the end of the day, high sleep need is a part of me. In order to care for myself, I need to honor that, and as an ongoing effort at self-compassion, acknowledging this as who I am and letting go of the notion that needing sleep is something I can or should fix has been a bit of a paradigm shift toward self-acceptance. One that is (as with most things in my life) long overdue.

My path toward self-compassion has meant recognizing the many ways that I am not a round peg in a world where pegs don’t work unless they are round. It means accepting where I don’t fit typical expectations, and refusing to frame that as any type of failure or inadequacy. It means that rather than finding ways around the ways that I am different or quirky, that I will respect who I am and how I am made, and accommodate my needs rather than suppress or ignore them. In other words, I’m finally doing for myself what I have naturally done for my children for years.

This is what it takes for me to thrive, and doggone it, I deserve to thrive.

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This is what it takes for me to thrive.

 

 

 

running

Back to Basics, Back to Balance.

I’m getting back on the wagon. No, I am not on a diet. (Well, not really).

I have this pair of snow pants that are my “reel it in” gauge. I’ve had them for over 20 years, and while their primary purpose is insulation while playing outside, the serve me well as the canary which signals that things aren’t what they should be. I’ve taken to doing a serious wiggle dance to get them over my hiney, so that is my signal that it’s time to eat less and move more.

My presumption is that it’s far easier to lose 10lbs, (even if it’s the same 10lbs that I have gained and lost umpteen times) than it is to let it go any further.

The first thing I do is start a food log and get a handle on portion size.

Because I love to eat.

It’s not easy to calorie count when 90% of your food is made from scratch, but at least I know I’m in range.

Next step is moving more. I’m not exactly sedentary, but let’s just say that writing isn’t an aerobic workout. But, my knee and my thyroid are back in shape, which removes my limitations.

There have been a few times in my life when I have been strong, healthy and fit. Though I know that as I age regaining and retaining that level of fitness will get ever more difficult, I will get as close to this as possible.

It might sound like I’m getting carried away, it might sound like vanity, and sure there’s some of that, but that’s not all.

When I make time to exercise and eat right, it’s the best self care I know how to do. It improves my physical health, my emotional and mental health, and there’s enormous benefit to loving the way I look.

The Lee I like best is the one who comes in soaked with sweat and flying high on endorphins and endocannabinoids after running for an hour or two. She’s the one who is a better wife and mother and happier person. Probably because I treat her so well.

It’s all about balance, and my balance has been teetering, so here I go again.

parenting · special needs parenting

What a Load of Should

“What are you doing for you?” It was Ben’s caseworker checking in.

I cried.

I was ashamed.

I didn’t have an answer. I know I should be taking care of myself, but…it just seems like one more item on an overwhelming to-do list.

Sometimes, lately at least, taking care of myself feels like a burden.

It means something else doesn’t get done.

It means that the piece of me that I had earmarked for someone or something else has to be set aside.

It means one more thing to squeeze into my day.

It means guilt because I have put myself aside.

Can I win?

If I do this instead of that, am I really better off?

….

I have long advocated for self-care, but truth be told, self-care is the first thing to fly out the window when stuff gets chaotic…and chaotic happens a lot around here.

Instead of doing something for myself I stuff a couple of cookies in my face.

Instead of doing something for myself I sit on the toilet for an extra 57 seconds to scan my phone.

Instead of bothering to try, and just get interrupted, I skip doing something just for me for days at a time. Sometimes weeks.

….

Funny, it didn’t bother me until she mentioned it.

So

I spread this load of should all over the place, and that makes everything, and I do mean everything worse.

….

But maybe I can back that train up.

If I can’t squeeze in something to do for myself, can I manage some self compassion?

Kristen Neff (I haven’t read her book, but she defined self-compassion, which absolutely deserves a shout-out!) identified 3 parts of self-compassion; self-kindness, common humanity, and mindfulness.

In other words, do unto yourself as you would do to others…

Whoa…

If I look at my situation through a lens of self-compassion, my shoulds magically clean themselves up.

The guilt I felt over my failure to make time for myself abates a bit. The burden of trying to be all things to all people lightens when viewed in light of my humanity, with some self-kindness and a dash of mindfulness.

If a friend of mine spilled her guts and they looked about like mine do right now, wouldn’t I tell her she’s enough? That it’s okay to put herself aside, as long as it isn’t for too long? I’d probably suggest that she seize any opportunity that arose to relax and enjoy some quiet, but until then… I would assure her that she’s going to be okay.

Because she will.

special needs parenting

What Does Real Self Care Look Like When You Parent Complex Kids?

I’m getting a mani-pedi today. If there’s a poster for self-care a mani-pedi would be on it. It’s relaxing, makes you look better, and it’s a couple hours away from the grind. The bonus is that I have a couple of gift cards to offset the cost so it’s not even a ding on the budget.

As spring arrives I will take pleasure in my beautified bare toes and most certainly ruin my mani by the end of the day, but that’s not the point. The point is the break, the focus on myself. A much needed boost to my spirit.

But is it ever enough?

I believe in self-care, truly I do, but (you know what they say about “but”, ignore everything before it) it’s like offering a candy bar to someone suffering from malnourishment. It will taste great and give a momentary pause to the pangs that rumble nonstop, but it will do nothing to correct the underlying void. A malnourished person needs not a treat, not a single meal, but access to long term sustinence.

And the full time parent of complex kids doesn’t need a mani-pedi. It’s a candy bar that will only quiet the pangs momentarily.

What is needed, truly needed, by parents, especially the primary parent of complex kids, is much wider and deeper than a few hours of self care can begin to address. When you consider that moms of autistic kids have stress levels akin to that of combat soldiers it becomes apparent that a brief outing isn’t even beginning to address the issue. It’s a bandage on a hemorrhage.

What is necessary is wraparound services. Respite, extended school years and more.

We recently found out that Ben was approved for the Children’s Waiver Program. This program will provide for him all the benefits of Medicaid, despite our income being over the threshold, as well as respite, Community Living Services (someone to help Ben learn how to do things that most people take for granted, like tolerate an outing to the grocery store). When getting the news of approval I felt like a someone took me by the hand, showed me a farm with a garden full of bounty and a barn full of animals that, if well cared for could nourish our whole family indefinitely.

I’ve been told that the church or private charities should step in. Idealistically I agree wholeheartedly, but I have yet to find a church or charity that is equipped and capable of stepping into the enormous gaps that families like ours have year after year.

It takes interventions like the Children’s Waiver Program to make a difference in the lives of families like ours, there’s really no substitute.

I’ll go get my mani-pedi today, and it will be a treat, but it won’t satisfy. It won’t fill the void and I’ve learned not to expect it to be enough. I’m beyond grateful to anticipate finally having the resources we need, but at the same time, I look at so many other families I know, moms who live as combat soldiers who need it just as much as we do.

We need to do better.

special needs parenting

When Sensory Issues Collide

When Alex was little I learned about Sensory Processing Disorders. The OT teaching the sectional at the conference I attended had participants take and score a sensory profile. Mine showed moderate to severe sensory dysfunction in all areas.  I’m mostly defensive. I don’t like noise, most touch feels overwhelming to me, especially on my face and head, and I don’t like too much vestibular (inner ear) stimuli, but I move my limbs a lot, especially when I’m tired or stressed. I do have oral/taste cravings though…so if you catch me swiping all your Wint-O-Green Lifesavers and chomping them down one after the other, I ask for forgiveness in advance, it’s hard to help myself. 

Then along comes Ben. He soothes himself by touching my hair, he’s hearing impaired and seeks noise all the time, except if it suddenly becomes too much, at which point wailing ensues; and he can’t stand my jiggling. 

We’re quite a pair. Everything about my sensory needs demands quiet solitude and everything about his needs is exactly the opposite. And we’re constantly at odds. 

It’s spring break and my husband is working out of town. That means from the time he gets up before 5am until he falls asleep in my lap at 8:30pm, we delicately navigate the minuscule space between his needs and mine. 

Because I understand his needs, and I get that they’re needs, just as much as mine are. But sometimes it’s impossible to take care of him and myself.  Sometimes I hide. Sometimes I lose my cool. And I always always feel rotten about it. 

It helps when the weather is fine and we can both blow off steam outside, that seems to be our sweet spot, playing outside. But when the weather doesn’t cooperate and we’re stuck in these 4 walls, all bets are off. 

This is where self care reaches a dead end. I know beyond a shadow of a doubt that I can only be the caregiver I need and want to be when I prioritize self care, but how do I make that happen on long, rainy weeks, cramped into a house around the clock together. Because believe me, going out to do something “fun” won’t help. 

I adore this child beyond words, and I will never stop seeking those ever evasive solutions to these situations, for him and me both. 

Uncategorized

What a Bright Idea!

*Disclaimer:  I am not a product review blogger, but I am reviewing a product for this post. The product I am reviewing was a gift. I did not receive any compensation for this review. My results are my own, this is an anecdotal testimonial, no more or less.*


I joke that I’m solar powered, but it isn’t a joke. You can safely guess my mood and energy level by looking outside. If it’s sunny, I’m good to go, cloudy, not so much. Cloudy for days, you might have to dig to find the hole I’m in. 

My mother in law has observed this, and kindly offered to help. She recommended using a full spectrum UV lamp, and offered to buy it for me. 

It’s been about a month since I got the lamp. I use it daily for about 30 minutes, which is the manufacturer recommendation. If possible I use it when my children are in the room as well, hoping they will receive benefits, though I don’t observe sun related mood swings in them. 

As a baseline, I tend toward melancholy. During a string of sunny days when I can get outside and exercise, the melancholy is mild. When days turn cloudy, I not only struggle with energy, but the tinge of melancholy blossoms into the blues. When the Michigan skies are battleship gray for days or weeks, I feel as though dementors are sucking out my soul. I struggle to juggle all of my tasks, and anything that requires both mental and physical energy will likely be back burnered. 

Since I have been using the full spectrum UV lamp daily, I have not had a dementor day, even during long overcast periods. Now granted, it’s not January in Michigan yet, when the seasonal darkness takes on an actual physical presence, but that said, even during the summer I have more than a few dementor days. 

I plan to revisit this topic periodically to update, but as of today, I’m tentatively optimistic that I can stave off the worst of my sun related mood swings with full spectrum lighting.  

For the record the brand I’m using is the Carex Day-Light Classic Plus Bright Light Therapy Lamp.