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.

BrenĂ© 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.

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?

parenting · special needs parenting

The Loneliness, Do you See it?

A couple of my friends shared this post this morning. Take a minute and read the texts that special needs parents would like to get.

There’s a theme there, do you see it? They’ve been left behind. They feel invisible. They’re lonely and overwhelmed.

It’s pretty much accepted in special needs circles, our families get left behind by most of our friends. We’re the ones watching the world go by and wondering if everyone has forgotten we’re here. The people we hung out with before special needs entered our world went on about their normal lives and we couldn’t keep up.

I suspect we ghosted them or RSVP’d “no” a few too many times. Do they know it was unavoidable? That we wanted to go but couldn’t find child care? That it’s hard to get out these days? It sounds selfish, but we need our friends to bear with us a little bit. Consider what it’s like if your child has gotten mono and you have had to slow down and tuck in for a season to care for them, maybe that’s a good comparison, except it isn’t just a season for us, it’s ongoing. It’s hard to see everyone get together without us. I wish I had the energy to try harder, and I wish you cared enough to slow down and include us. Or just show up once in awhile.

It’s tempting to just write it off, suggesting that it’s your loss, or that we must have never really been friends anyway. But I did think we were friends, I really did. I think that if your child had special needs and mine didn’t that I would have stood by you. I thought you cared about our family, and when we went through our hardest times, the test was too much for the friendship to bear. It’s a loss for me, a big one, though you don’t seem to feel the same. It hurts.

I usually focus on the ones who stayed. The friends who showed up instead of stepped out. The ones whose steadfastness has exceeded what we ever could have asked for. Those friends who do show up with coffee and a smile, the ones who have carved out time for us when we couldn’t keep up, who make room in your lives no matter what. We know it’s hard to fit us in, and we know it takes effort to include us, but you always do. You always do.

advocacy · parenting · special needs parenting

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.

special needs parenting

Joy is an Act of Resistance

Yesterday was a day that started out dicey and slid down the slippery slope to an urgent visit to a psychiatrist and social worker at the Community Mental Health office. Tears were shed, cuss words were uttered and there were some awful moments for every single family member.

In the morning we had discussed having a fire in the fire pit and eating dinner outside. Even after the kerfuffle that kept on escalating, we managed to have our fire.

It seems obvious that when your day completely derails to admit that it's simply derailed and hang it up.

But I don't believe it.

Our fire was a bold statement. A statement that screamed that the awful moments won't define us. That we refuse to surrender to the chaos. That we will continue to pursue joy no matter how elusive it is.

So we had our fire and we laughed and had s'mores and lived. At the end of a fractured, derailed day we came together and declared that we will continue to try. No matter what.

This isn't denial. We know how close we were to disaster, it's defiance. We will not let our derailed day define us.

It's resilience, the act of getting up again and again no matter how many times the rug is pulled from beneath us.

It's resistance, refusing to slide down the slippery slope into despair.

It's a way of communicating our determination to win the war even when we lose the battles.

It would have been easier for two exhausted parents to just throw the food on the kitchen table and claim every right to give up on the fun we had planned. It might have been the obvious choice, but we would have missed the fresh air, the communion and teamwork that happens when you enact a plan together.

We had our fire and it was good. We ended the day with a fresh cherry of joy and a dab of whipped cream on top of the sundae we had to pick up off the sidewalk.