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.

environment · homesteading · stewardship

Save Money and The Planet Without Freezing Your Butt Off

I’m over half Dutch. My maiden name is Dykstra. Having grown up in a Dutch family in a Dutch community in Michigan, I was steeped in the core Dutch value of frugality from the moment I took my first breath.

Frugality gets a bad rap, but should not be confused with the miserly disposition that can accompany it. Frugality squeezes the most out of what we have. When done with a certain mindset it can be a creative, enjoyable lifestyle that imbues generosity, rather than stinginess. My parents embraced and encouraged stewardship along with their natural knack for stretching their dollars, so it’s natural for me to do many things along those same lines. If I can save natural resources and money at the same time, doing so is a no-brainer!

Here are my favorite tips for staying warm without breaking the bank:

  • Open the oven after baking to let the heat escape. (Bonus there is food involved!)
  • Skip the dry cycle on the dishwasher and let the hot dishes air dry with the door open and allow the heat and steam to escape.
  • Instead of using the vent fan in the bathroom, let the hot air out of the room after a shower.
  • Close off heat vents and shut doors of unused rooms.
  • Use fireplaces or space heaters to heat living areas.
  • Use heating pads or electric blankets to warm up if you’re home alone, rather than heating the house.
  • Cuddle your pets (their body temperature is warmer than ours and it’s good for your health!).
  • Make a tent over a heat vent and let the warm air swirl around you (Little House on the Prairie nightgowns are great for this!) We used to do this while eating breakfast on the weekends, so there’s serious nostalgia involved for me.
  • Use layers and blankets.
  • When the sun is out open the shades and sit in it like a cat, and when it’s hidden, close them against drafts.
  • Drink warm beverages.
  • Keep a rechargeable hand warmer in your pocket.
  • Shake your booty and increase your body temperature.

While I readily admit that I’m a post-menopausal warm-body, so when I’m home alone I keep the house frigid and don’t even mind, as a mom, I strive to keep everyone comfy, and often use multiple tricks from my bag at once. If you have great tips, be sure to add them in the comments!

autism · cancer · Down syndrome · parenting · special needs parenting

Always Waiting For the Other Shoe To Drop

We are on a bit of a roll over here.

We have a steady respite person. This week I got an application for a self-determination employee, someone who will take Ben out and work on community living skills with him, and Ben’s caseworker has things lined up for ABA therapy to start soon.

Not only that, but his health seems to be fairly stable. we have the steady stream of appointments lined up to maintain stasis, but his sinuses are relatively clear this year, and after several months of a MRSA infection, that is clear too. We’re barreling toward 3 years since his last hospitalization, a personal best.

His new psychiatrist is using a combination of medications and supplements which seems to be effective, meaning no violent outbursts in the last two weeks (a big deal here). By every measure, we are making progress, loose ends that I have pursued for years are coming together. We are moving past many of the dead ends and setbacks we have slammed into through again and again.

Only an itty bitty piece of me indulges in celebration. A morsel that is quarantined away, so as not to grow or infect any other part of me. Carefully encapsulated, observed and disciplined, so as not to risk any loss of control. I’m reluctant to even mention any measure of success.

Instead, I steep myself in caution. I mentally list all the things that might go awry, cataloging them repeatedly in chronological, alphabetical, and decreasing and increasing orders of severity. With an epilogue full of asterisks in case of some unforeseen and unforeseeable event.

Because we live in the land of the unforeseeable.

In complex parenting, a hospital discharge can mean a return with a worse diagnosis later.

In complex parenting, medications come with reactions and side effects that strike at any moment.

In complex parenting, a routine appointment too often turns dreadful.

In complex parenting, we brace for the worst-case scenario, not out of fear, but out of habit.

In complex parenting, we don’t rest on success or achievement, because there’s always more to accomplish. Because the bottom can fall out at any time.

We live precariously balanced. We unravel knots while tying up others. We tiptoe around, not on eggshells but on shards of blown glass, knowing that any misstep leads not only to breakage but to harm. We guard our hearts against joy and celebration, no matter how hard-earned, because we’re braced for a crash.

It’s a superstitious, ritualistic juju dance of not jinxing ourselves and warding off the bad by keeping our fingers crossed and a loose grip on the good.

Brené Brown called it Foreboding Joy, and I reaffirm my departure from her on this. If you get excited when I share my news, I won’t join you. When you tell me you’re praying for it, I won’t bother telling you I don’t exactly trust God to keep us from the fire, rescue us from the fire, or keep the fire from consuming us anymore because experience hasn’t borne that out.

I’m keeping my armor fastened, with a crest of foreboding joy on my breast, and charging forward as always. I don’t know if it’s smart, necessary, or maybe even slowing me down, but without it, I stand naked and terrified.

 

advocacy · autism · Down syndrome · special needs parenting · Uncategorized

At The Risk of Sounding Like a Jerk. . .

Can I confess some mixed feelings?

A little backstory: Alex brought home a flyer for the Night to Shine”, an event created by the Tim Tebow foundation to provide a formal dance night for people with disabilities.

It’s probably no surprise if you have read my previous posts to find out that I’m prone to over thinking, and this is a prime example of that. But pardon me for working it out here with you, especially if I end up with pie on my face.

Of course, Alex wants to go to the Night To Shine. An evening out with his friends to get dressed up and dance is total fun for him.

I don’t want to not let him go. I mean, what parent wants to deny a child a fun time. And if you know anything about Alex, when he’s having fun it’s beautiful and contagious.

Yet, I’m struggling to get past the yucky feel of the thing.

By yucky I mean it feels like a Cinderella story where for one night everyone has fun playing pretend, and then when the clock strikes midnight the shoe falls off, the coach turns back into a pumpkin and everything goes back to how it was in the first place.

When the boys were younger we signed them up for a football event called Victory Day, where the participants took the field with a local high school football team and were handed the ball while the high school players gave academy award winning performances pretending to tackle the disabled person who eventually succeeds in running the touchdown. The whole thing was contrived, in a good natured way, but what rubbed me wrong and aged badly, was Ben’s touchdown run.

Ben doesn’t follow anybody’s playbook but his own, and rather than running a touchdown, Ben fancied himself a defensive tackle. What Ben wanted was to take down the ball carrier. Ben’s chance to play football with the bug guys became a comedy of errors, because Ben wasn’t about to run the ball, and instead, did his level best to get in a few good tackles. They ended up carrying Ben over the goal line in order to get him off the field with less than a full hour of time off the play clock. Long story short, the day left an aftertaste, one that leaves me wondering what the volunteer time, money and effort is really about.

I can’t fault the players for making every attempt to follow through on what they were supposed to do, but what, in retrospect, seems off is that the people the day was supposed to be for had no voice in how their one shot on the field went. They were given a ball and expected to do what was planned for them, rather than being offered a say in what to do.

Which leads me to wonder if when these things are planned, are there people with disabilities on the committees? On the foundation staff or board? Or is this something that typical functioning people are doing for people with disabilities?

Let’s walk this back. If you’re a woman, do you want all men creating and enacting their vision of what you want? If you’re an introvert do you want a committee of extroverts deciding what introverts want. It can go on and on with various people groups, but suffice it to say, every people group deserves representation when plans are made, rather than having plans made for them, and people with disabilities deserve that no less than any other group.

Looking into the Tim Tebow Foundation I am not easily able to ascertain if any board or staff members have disabilities, but I’m fixing to find out, as well as checking the local planning groups. Representation matters. Self-determination matters. It’s fine to serve, but even better to include and involve, while listening.

For now, I think Alex will attend, but not without reservations on my part. I’ve emailed the foundation and am eagerly awaiting a response on how involved people with disabilities are at the planning level. Stay tuned.

ADHD

Done With Consistently Inconsistent: Why I’m treating my ADHD

Over the past six months, I have gone from wondering for years if I have ADD/ADHD to discussing it with my counselor to getting evaluated and diagnosed, and finally to getting treated.

As with everything in my life, the path has been consistently inconsistent. In fact, if there was a catchphrase for everything I have ever done, it would have to be “consistently inconsistent”.

I start things with enthusiasm, only to stall out between 50-90% complete.

I work hard, except when I sink into an abyss of Candy Crushing.

I’m smart and capable, except when I’m a total airhead.

I am compassionate, thoughtful and considerate, except when I blurt the rudest comment possible.

can focus, especially when something is fascinating. Except when I simply cannot.

For many years I would see the signs of ADHD in myself (yes, I have the “H”, even as a fortysomething woman), and add the disclaimer that everyone is like that sometimes. My mom, who is the most dutiful person I know, tends to run late and lose track of time. My sister, who is second only to my mom in that category, has days when she falls into that candy crushing abyss. I suspected that much of it was just the stigma that less-than-organized women suffer just because we don’t fit a stereotype. Yet, the inability to plan and complete projects, the very aspect that caused my failure from the gifted program in middle school kept echoing through my life.

For every diagnostic aspect that I have of ADHD (for the record, I meet diagnostic criteria and severity in all of the characteristics), I can think of someone who has the same thing, at least as bad or worse. What was missing in my equation was threefold.

First, I was thinking of one of the many aspects that I have, and not realizing that it’s the only aspect or one of only two that others have.

Second, those I didn’t recognize that those inconsistencies are the rule instead of the exception for me, and not for the other person in mind.

Most importantly, what has been apparent, especially in hindsight over the years is the fact that these inconsistencies have not only disrupted my life and my goals, they have disrupted my view of myself.

Listening to this webinar recently (not watched, mind you, in order to focus I listened while stacking wood), all of the remaining pieces fell into place perfectly and made sense. If you have ever had the aha! moment of all of recognizing something about yourself that changes your perspective about everything, past present and future, you will relate to this experience. Rather than hearing Dr. Hinshaw, the presenter, expound about girls and women with ADHD, he was telling me about myself.

I have, at several times in my life been diagnosed with depression. I already suspected, but when diagnosed with ADHD, I also met criteria for generalized anxiety, anticipatory anxiety, and social anxiety. Each of these commonly co-occurs with ADHD, especially in women.

***

Running and coffee have been forms of self-medication, unable to run, my struggles have multiplied, thus the diagnosis and treatment.

I took my first dose of Adderall this month.

I have developed many coping skills, and my wonderful husband creates organizational systems for me, makes lists, and reminds me endlessly of things I need to do, but I’m weary. The perpetual backward slide (which I refer to as entropy) has taken too much of a toll for too long. I don’t want to fight anymore, and I’m not even sure I can; I suspect that I don’t have it in me to keep pushing indefinitely at this pace for such paltry results.

Being realistic about the effect on my body, and the need to continue to develop the skills that I need to do life better, medication is a game-changer.

Already, I have gone from feeling like I’m running on ice to getting traction and hitting my stride. Without medicating the anxiety, I have less of that too. It seems that being consistently more consistent makes for a more predictable and less chaotic life, which (for me at least) reduces anxiety. For a few weeks now I have not fallen into bed and suddenly realized what I neglected, but rather, felt a sense of accomplishment and pride.

This is but the start of a new chapter, and with many more to come, I realize that surprises can and will arise, that my approach will likely change, and that this is not a solved problem, but rather a new direction with favorable change, for now at least.

I think I was due.

running

I Never Have Been One To Give Up

Late October of last year I was having a crummy day and took off for a run. I needed the fresh air and movement to calm my mind, and I don’t use the word need lightly. There’s nothing absolutely nothing like a run to organize both my thoughts and my day and give a hefty lift to my spirit.

At the end of my run I limped up the driveway and decided to call the doctor and take a month or so off, just for good measure. The crankiness in my knee was becoming downright ticked off, and running was the obvious culprit.

Fast forward to today, a year later, and I have attempted two runs since then.

Darn.

In August, I decided to quit going for walks too.

I had been beyond worried that it would be a surgical case, that I’d be laid up for several weeks. Instead it’s a complex scenario of bursitis, patellofemoral syndrome and IT band syndrome. None of them are particularly severe, but none are readily treatable.

We tried two different types of injections in two different places, and I’m none the better for them.

What more is there to do but rest? This particular malady, or combination of them, isn’t awful, in fact, when I just sit around, it calms right down.

Alas, that’s easier said than done. Running not only keeps my mind on track, it tones and sculpts my body. It’s my go-to for managing stress, grief, joy, frustration, my ADHD and my weight and health. I have literally been self-medicating every part of my physical and mental health with intense and prolonged exercise. It’s like the snake oil of yesteryear, guaranteed to fix everything from the vapors to sleep.

And now, like dust in the wind, it’s gone.

Not that there is such a thing as good timing, but during the first year after losing our daughter to an overdose, I was in a lousy position for losing my primary coping mechanism.

I prefer to keep a positive attitude, but in this case, I have been just plain pouty. I’ve lost my ability to run in the past, and against the odds, worked my butt off getting back on my feet. I just wonder aloud why me, when there are millions of people who would no sooner run than be swarmed by bees. A knee that only gets cranky with exercise would be no burden to many, why, once again, do I have to suck it up and give up something that I love and that’s good for me in so many ways?!

I won’t BS you and try to say that I understand any of this. But I will tell you that I’m not about to stay down.

Instead I’ve been seeing a counselor and learning new and more coping skills. I’ve developed many new hobbies like collecting maple sap and making syrup and tending chickens, as well as cultivating my largest and most productive garden yet and canning and freezing the bounty.

I’ve enjoyed living the slower pace of homesteading, and it’s indubitaly beneficial to have my pocket full of coping skills to better equip me for whatever life throws at me.

But. . .

I won’t give up on running.

My shoes have moved to the back shelf in the garage, and they’re mighty dusty, yet I’m clinging to them with just a tiny glimmer of hope.

I never have been one to give up on anything.

advocacy · Down syndrome · Uncategorized

Down Syndrome Awareness is Not Just For Little Ones

When my son Alex was first born, I felt compelled to make sure everyone in our lives knew just how precious he was. I enjoyed great success, but in retrospect, Alex made it easy. Babies with Down syndrome are often adorable, and Alex was no exception. He made my advocacy job easy, and after awhile, considering my success, I relaxed a bit on the advocacy. There were IEP meetings, and plenty of parenting tasks to take up my time, so campaigning for the acceptance he already enjoyed seemed somewhat superfluous.

Fast forward 16 years, and Alex has hairy legs and armpits, a deep voice, and is almost my height. As any mother does, I still think he’s the most spectacular child in the world, and as cute as ever. However, when you add in significant speech and social skills delays, compounded by the already interesting early teen phase, he often doesn’t get the warm public reception he once did.

But as Alex’s mom, I want to tell you that he is the most thoughtful young man I know. Every single day he asks young man I know. Every single day he asks me how my day was, and even actually listens to my answer. He loves nothing more than cooking, except eating, and will cheerfully lend a hand to anyone who asks.

Alex is a gamer extraordinaire, and can beat just about everyone he knows in almost any game. He can throw an awesome spiral with a football, and hit a home run in baseball. (He gets his athleticism from his father, not me.)

Alex deserves awareness too, just as much as the older teens and adults do. People with Down syndrome are diverse, interesting and valuable as members of our communities. They have desires and interests, and live full, active, productive lives. More and more they are branching out into careers as actors, models, business owners, and contributing their considerable gifts the the communities where they reside, and their communities are better for it.