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.

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.

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.

introvert · Uncategorized

Will That Be One Lump Or Ten?

Phone calls vex me.

Assertiveness is toward the bottom of my list of personality traits.

I would rather streak across the Super Bowl football field holding a neon sign over my head than confront anyone about anything ever.

But part of adulting is doing all of the above. And I do them often. In order to manage my home and family, I have to make uncomfortable phone calls, and with the high needs of my kids, I would bet those come more often than average.

For me, a socially anxious introvert, to move past this and be a somewhat effective human being, adult and parent, I developed a hack. The one social skill I actually do possess is the ability to find something my conversation partner will talk about. And in so doing, I throw in a handful or two of sugar, (or sometimes ten). I am great at getting people to feel good, or at least better about themselves, and getting a chuckle out of a mediocre joke.

For example, yesterday I had to call my son’s doctor three times for the same issue. Each time I spoke with a different person, someone who had contributed nothing to my frustrations. It would have been misplaced at best for me to act out the annoyance on person 3, who was doing her best to solve our problem, but at the same time, I was to the point where if the job didn’t get done right a supervisor would need to get involved. Yet I was acutely aware of the fact that if I was a jerk, things would only go downhill. So I started joking.

In my experience, at least two thirds of the time that you’re on the phone with a customer service representative, they will mention that the computer is slow. This is pretty much a freebie. I make fun of the computer, and suddenly we’re allies.

Then I thank them for just doing their job, even if they haven’t done it yet. There’s a good chance that the person I’m talking to has had a few frustrating conversations already that day, so if I can be the one that makes them feel like what they’re doing is worth it, it is that much more likely that they’ll get the job done quickly and well.

Then I find a reason to compliment them. This completes my trifecta.

I get great results with this formula, and hopefully leave the person I speak with in a little better place than I found them, which is a goal of mine in virtually every interaction ever. But the bottom line is that I do it for me. It’s a coping skill.

Having a set formula for phone interactions not only gets me the results I’m seeking, and gives the person I speak with a boost, it’s the ticket to dealing with what might otherwise derail me. I remind myself before dialing just what my steps should be, and having a plan empowers me to have an effective conversation.

It works in person too.

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.

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.

special needs parenting

My Love Letter to All those Moms of Really Tricky Kids

When I found out that my son was born with a disability, I felt isolated and alone. As his mother, I landed in this category of different.  As much as I embraced my child and his disabilities, I was the mom who spent hours a week with Early Intervention and had a bookshelf dedicated to my child’s needs. In those early days I felt a bit lost, alone on my parenting path. But along the way something remarkable has happened. 

Then we hosted a parent coffee for other parents of kids with Down syndrome when Alex was an infant and only one couple showed up. Their son was just a smidge younger than Alex, and we spent the evening exchanging stories. For the first time Mike and I shared some of our insecurities about our new roles as parents of a child with a disability, and so did they. And suddenly this different path felt less lonely and strange. We had company, there was strength in the companionship there was something magical about finding this couple. We didn’t know it then, but they was the first of many people who would cross our paths on this complex parenting adventure. 

When I talk with most women, they try to understand, they ask questions, listen carefully and are sincere in their efforts to grasp what our lives are like. It’s necessary to have these exchanges so that others may know at least in a general way, what this different path looks like. But my role is that of an interpreter, always translating, life on this path that they will never actually experience and only ever see the tip of the iceberg, having no idea of the enormity of what lies beneath the surface, I often feel as if I leave them more puzzled than enlightened. 

Then, when I connect with another complex mama, everything fits. Instead of meager attempts to show them a snapshot of our lives, they’re finishing my sentences and nodding along. I don’t need to translate because she’s fluent in my language. Without even trying, she recognizes the vast enormity of the iceberg, because she has one (or more) of her own. It’s effortless, it’s as comfortable as as my favorite pj’s.  Sometimes I bring out the deepest, darkest wildest stories, the ones even close family members never hear, just because I can. The catharsis is epic, because when you find those moms, they can match the stories without even blinking. 

There’s nothing like it. 

I’m a validation junky. If it could be manufactured into drug form I’d need unlimited refills to ensure I’d never be without. Getting that connection, that understanding is a necessary as air and water 

I’m weary of the overuse of the word “tribe”, I’m not one for clichés or cultural appropriation, so I avoid the term, but I’m not sure there’s an adequate synonym. Mom’s of tricky kids are my tribe, my clan, my people. I could not make it through this adventure without them.  No matter what happens, no matter how odd I feel, whether I’m overwhelmed or overjoyed, I can count on those few people to just get it, to cry or cheer along with us, to share our joys and sorrows in true community.  

Dear moms of tricky kids, with every fiber of my being I am grateful to you. For your unconditional acceptance and unity. You are the sisters of my heart and I couldn’t do this life without you.
*Disclaimer:  While this is written by a woman to women, by no means do I exclude the fathers. The men on this road are just as valiant and worthy as the women, but by nature of being a mother, I do relate and connect mostly to other moms.*