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.

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.

 

Down syndrome · parenting · special needs parenting

Making Peace With Our Question Mark

When you have a child, they say your heart walks around outside your body, and I couldn’t agree more. All of the hopes and dreams of another person somehow mean as much to me as my own ever have.

We tend to think we will know what parenthood looks like going in. It starts with midnight feeds and changing diapers and blossoms into milestones. Before you know it there’s an independent human being making decisions and taking on the world. Supposedly, if you do a halfway decent job of it, the child becomes successful and lives a good life. But the reality is seldom so cut and dried.

When you have a baby with a developmental disability, you get advance notice that children don’t come with a recipe, guaranteed to come out as expected as long as you follow the directions properly. You know how it’s supposed to go: play sports, do well in school, go to a good college, find a wonderful spouse and enter a great career. Ensure good values and belief system of your leaning. Stick a toothpick in it to ensure it’s baked through and voila!

The recipe is punctuated with random question marks, some more than others, but we don’t understand them, don’t like them, and do our best to ignore them or stomp them into the ground.

Our son Alex is 16 now (hokey Pete, how did that happen?) and we aren’t sure if or how or when college or trade school will happen. He has career aspirations, and we work together with his school team to make step by step goals towards them. He is thoughtful and tender hearted, so we hope for him to find true love. Independence is still millions of baby steps away, and not a clear picture yet.

The recipe card most people cling to is the length of a novel for us, with many revisions and impromptu modifications. Our question marks are neither random nor infrequent. They started immediately and they’re everywhere. Early on we looked question marks straight in the eyes, then made it a full partner in the effort instead of something we try to avoid or ignore. We embrace the questions because we recognize that nothing is given or assumed for anyone, but especially so when parenting children who are not neurotypical.

Once you acknowledge the question mark, you can make peace with it, not only on behalf of your child, but in general. There’s a certain comfort in saying aloud that results are not always proportional to the effort and plans , no matter how brilliantly derived, unravel here and there. Once it’s on the table, the question mark isn’t so terrifying anymore, and it frees you up to focus on the process without clinging so desperately to results.

In so doing we find the magic in the process. And oh boy do we know about magic around here.

marriage · parenting · special needs parenting

A Tribute To My Husband…

We are a case study of opposites attracting. He’s a headstrong doer, I’m a heart-strong be-er. He takes conflict with his daily coffee, whereas I will go to the end of the world to avoid hurt feelings. He’s decisive, I procrastinate. He talks on the phone and connects with people, I text and keep to myself.

Yet somehow it works. We’ve been married almost 23 years now, and though it took us awhile, we figured out a thing or two along the way. I have to say, we do all right.

When the neonatologist told us our son appeared to have Down syndrome, it was him who took the lead, accepting the diagnosis and plunging ahead. I might have floated adrift for quite some time, but Mike rallied immediately, then threw me a lifeline and reeled me in.

We often have tough decisions to make, and when I waffle he’s strong. When I procrastinate he pushes. When I get bogged down in my feelings, he’s pragmatic. When frustration gets the best of me, he’s diplomatic. When I demure, he asserts. When I feel, he thinks.

I’m pretty sure people envision me in the driver’s seat in our complex family, and I don’t think that’s wrong, but if I’m the driver, he’s the engine. One of us wouldn’t get anywhere without the other.

I don’t know how much I actually pause to appreciate my husband. Certainly not enough. In case I haven’t said it lately, I notice you. I appreciate you. I value you for who you are and for all you do. I can’t imagine living this life and parenting this crew without you right here with me for every little detail. In the midst of it, you make me a better me. You call me out when I’m off-base, you challenge me to improve myself, but you love me exactly where I am. I know you didn’t ask for this crazy life, but you have stepped into it and mastered it. I love you completely. And just in case I forgot to tell you, thank you. You are a treasure.

cancer · family · grief · parenting · special needs parenting

The Price of Deeper Thoughts

It was on the wall in my mother’s bedroom, a poem written by her grandmother. I loved it as a child, even though I possessed only a superficial understanding of it at the time.

My great-grandmother was a gardener and a writer; I’d like to think we’d get along famously, as kindred spirits. I wonder if she had any idea what the words she put down on paper those years ago would mean to me.

The hot house flowers are beauties,

They have grown without a pain.

Somehow I’d like to set them out

And let them feel the rain.

With just a dash of wind in it,

Though t’would break a leaf or two.

I know they’d smell much sweeter

If they felt a Summer’s dew.

My daughter is a darling,

And of culture has her share,

But I hope some day to see her

Grieved enough to she’d a tear

For something she can never help

No matter how she tries.

T’would steal some joy, but deeper thoughts

Would peep from out her eyes.

I never got a chance to raise a hot house flower. I couldn’t have sheltered my children, because the storm came right into their home.

And when the winds raged and the storms came again and again, my hope against hope was in my great-grandmother’s words. That my one and only truly typical child would some day have those deeper thoughts peep from out her eyes. That building her strength in the storm would bring resilience and splendor that cannot be gained in any other fashion.

And I pushed back the fear that the torrent would destroy her.

She has had more than her share of joy stolen, but she is reaping the deeper thoughts. They aren’t always pleasant, and sometimes downright frightening, but they’re hard earned and stunning to behold.

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.

advocacy · parenting · special needs parenting

7 Big Truths About Special Needs Parents

Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.

No matter who it is or what the reasoning, I welcome it.

I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.

  1. We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
  2. The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
  3. We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
  4. We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
  5. Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
  6. We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
  7. We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.

What would you add?