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.

 

special needs parenting

If Comparison is the Thief of Joy, Then Count Me Out

As a blogger, I follow many bloggers, it’s what bloggers do. I love reading about other families and lifestyles and I often find myself nodding in agreement with the words on the pages, sometimes daubing away tears, other times spewing coffee with laughter; and when I read those, it makes my day.

On the flip side, there are many headlines that I scroll right on by.

When I do, it’s a bonafide case of “it’s not you, it’s me” I can be a little touchy, you see.

Actually, I’m not certain that touchy is the right word. It’s just that the normal challenges of parenthood elude me. When I read about potty training a 3-year-old (as challenging as that may be) I can’t relate, it never has been and never will be my challenge (Hannah was so the world’s easiest child to potty train, and the rest were a whole different ballgame). Just insert whatever normalish rite of passage parents are struggling with, and picture me making this face and scrolling right on by.

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Most bloggers strive for relatability, and that relatability is for the masses, the typical families with the usual struggles and normal crises.

Which means that they don’t relate to me at all, not even the tiniest little bit.

In a 16 year series of combined baby steps, normal steps and a few truly giant leaps, we have left behind any semblance of relatabilty in exchange for quirkiness and complexity.

This leaves us in a situation of continually trying to help people see us and make a bit of headspace for us where we are. Wading though the depths of normalcy on a daily basis, which reinforce just how unrelatable we have become. It’s a constant, relentless cycle.

Social media is like that for parents of kids with complex needs.

There’s this dichotomy for us when we log on and scroll down. My feed is a mix of folks from my family, high school, college and my former jobs, so there’s a pretty sizeable chunk of average in my timeline. That average is foreign to me, and often reminds me of just how many ways we veer away from average. Another contingent is my cadre of parents of complex kids. The ones whose lives are just as unusual as my own. Connecting with them feeds my soul. I write for them, and I read their posts and breathe in the connection.

In order to keep balance, though, I tend to avoid much of the Normal McNormalson that pops into my life via my screens. Leading our family through each day is a feat in itself, I don’t need the constant comparison to slow me down.

Keeping up with the Joneses will never happen. You know how they say that good fences make good neighbors? The same is true of the social media and blogging neighbors. I maintain a virtual privacy fence loaded up with latches and locks, not to keep my family in, but to limit the potential for constantly comparing and contrasting on my end.

That yellow tulip, popping up right there in the midst of all the purple makes for great contrast. It doesn’t blend, it doesn’t match, it just stands out. The tulip almost certainly hasn’t a care in the world about it’s mismatched setting, and likewise, I prefer not to fuss about all the purple flowers surrounding our singular yellow bloom. Our blossom is lovely in it’s own right, and needs not concern itself too much with the vast purple expanse surrounding it.

If comparison is the thief of joy, then I don’t think it’s a game I need to play. Protecting my heart and shielding my joy makes life around here so much sweeter, which is just the way I like it.

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

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?

special needs parenting

Letting Go of Hope Was the Best Thing I Ever Did

It happened after leukemia treatment ended.  I had spent over three years during treatment waiting for everything to get better, and then it didn’t.  I gave it time, it still didn’t.  I gave it more time.  You get the picture.

Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.

And so would the rest of ours.

It happened over and over and over.  Sometimes things would get better, but it never lasts.  And you know what they say about hope deferred.  I lived for years with the heart sickness of deferred hope.

Until I let it go.

Don’t get me wrong.  We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible.  I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.

In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it.  Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.

By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.

Letting go of that wishful thinking nearly crushed me.  I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions.  It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn.  I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.

And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.

parenting · special needs parenting

Why I Won’t Censor My Children’s Feelings 

“Don’t let her say that!”

Hannah was being frank about her feelings about our family situation. It obviously bothered the listener. I don’t recall Hannah’s exact words, but the were not insults, were not made in an angry tirade, and included no cussing. It was just an honest assessment of our current situation. 

Our situation isn’t always pretty. Hannah and Alex get the scraps of our parenting efforts leftover after Ben devours his feast. While Hannah is empathetic, thoughtful, kind and loyal, she’s also honest, and quite frankly, sometimes it outright stinks to have a sibling with enormous needs. 

So I considered her statement and voiced my approval. She was right, after all. 

I can’t fix the stress and strain in our family. It’s hard, not only as primary caregivers, but for children whose parents are burned out from the vigilance it takes to meet complex behavioral, developmental and medical needs.  I cannot count the times we have been unable to do some totally normal thing because it’s impossible to juggle one more thing. Or the times that we promised something we ended up unable to deliver because a high priority issue came up. 

Sometimes Hannah and Alex take the filter off and tell it like it is. And I wholeheartedly allow it.  

When kids are little we tell them to “use their words” to express frustrations, rather than acting out. When the older kids vent to me about the stress and disappointment of constantly being displaced to accommodate their brother, they’re using their words. Isn’t that what I taught them to do?

Sometimes their words sting. It’s difficult to accept that the reality of our family means that 2 out of 3 children usually get a crummy deal. I don’t like to hear my parenting failures spelled out in the vents of my kids, and sometimes they point out things that really sting. 

But if I shut them down, where would they go with their discontent?  Isn’t it better for them to have a safe outlet, a parent who adores both them and their complex sibling, to hear them out and bear witness to their hardships?  If I censor them, will their vents build into resentment and bitterness that is buried instead of expressed?  I’m afraid so, in fact I’m pretty certain. 

I believe that counseling would be a better option, but let’s just add that to the list of things I’ve failed to accommodate for Alex and Hannah with because the need isn’t so overbearing that I’m forced to act. 

I let them vent because I need to vent too. I listen to them because validation is my favorite thing, and I want to pay it forward. I don’t know how it feels to be Hannah or Alex, but I do want them to tell me!