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?

grief · parenting

Grubby Gratitude

With Thanksgiving Day situated toward the end of the year it’s natural to reflect back and take stock on the cumulative blessings of the year.

I believe in gratitude, I believe that focusing on all that we have to appreciate is a worthy practice no matter what, and especially valuable in times of heartache. So, this November I’ve been on a quest to find my gratitude and to meditate on the good in the world and my life.

What I have found is much like what I imagine finding gold to be like. I’m busy looking for something sparkly and clean, clearly beautiful and valuable. What I find is specks in an ordinary rock, stuck in the mud. It’s valuable, but so much more complicated than I expected.

I don’t remember the last time our family had a “normal” year. A year in which we didn’t go to bed on New Year’s Eve ready to bid good riddance to the heartaches of previous twelve months. And I don’t remember a Thanksgiving on which we didn’t have a lengthy list of things that make our hearts swell with gratitude. The problem is that too often the hardships cover the blessings, disguising them and making them look less valuable.

Looks are deceiving.

Nothing nothing will undo the pain of living through tragedy. This year our blessings, which are many, are shrouded in heartache. But they are there. They’re beautiful and worthy and wonderful. It takes work to reach into the mess and pluck them out of the yuck and clean them up. I find myself reluctant to start because the dirt looks like how I feel.

This year my gratitude is grubby, but it is there. It’s going to be a work in progress, but I don’t want to be so overwhelmed by the mess that I don’t even try.

My giving of thanks will be subdued, I might not be able to muster effusive delight over the many things in life that I have to be grateful for. Rather, I will be intentionally noting the beauty around me, seeking it out and tucking it away in the depths of my heart, where it will fortify and warm me in the days to come.