Smith-Kingsmore Syndrome

When Life Comes At You Through A Windshield

Kristen Groseclose — Fri, 21 Feb 2020 16:08:57 +0000

It had been an uneventful December morning… until the school bus hit my car.

So I’m sitting at the stop sign, waiting my turn to exit our housing development. Jack was buckled into the backseat and we were flawlessly executing our weekday morning routine of getting him to class. But then a school bus turns into our development too tightly from the left. I had just enough time to think a few expletives and pray that the impact would not be bad. The yellow bus with its black lettering filled my windshield. The next thing I know, my car was perpendicular to the road instead of its former and correct parallel placement.

Little did I know when I hopped into my car to bring Jack to school moments earlier, that it would be our tiny Honda Fit’s final trip.

Life can be like that, right? One minute you’re minding your own business and then the next you are in an ambulance, on your way to the hospital to be checked out. But I was so lucky. Jack and I were fine and the bus company accepted the full responsibility for the accident. Another blessing was that all of the kids on the bus, as well as the driver were ok too. Only my car was collateral damage, but cars can be replaced. And with the serendipitously-timed Toyotathon happening right then, replace it we did.

I felt giddy in the first few days after the accident, grateful both of us were alive and well. I made bad jokes about how Jack and I were the only ones in our house who could, with 100% street cred, say they felt like they got hit by a bus and own it. Moments after getting back from the hospital, I launched into post-accident, insurance minutiae without skipping a beat.

But then, as you might predict, the adrenaline wore off. The rest of December was hard. Because I wasn’t just dealing with a bus accident. There were a few other aggravating issues Mike and I were managing as well.

One large issue was Jack’s hyperactivity and inability to sleep the entire Christmas break. When I say he barely slept, I mean that literally.

His Fitbit data tells the tale. 82,000 steps in one 24 hour period and he had a lot of such high step days over break. Before Jack, I never would have believed that was even possible. Even Fitbit stopped sending congratulatory badges to my email, almost as if it, too, was getting concerned.

I’ve written before of his wacky sleep cycles in few previous posts, so I won’t rehash it here. Suffice it to say, Mike and I were tired and scared for Jack. He was so exhausted but his body wouldn’t let him rest. Things seemed bleak and unchanging.

I’m not writing about this challenging time in order to complain or for sympathy. Everyone faces difficulties in their life from time to time—it’s called being human. I’m writing because I know you also have also have these periods of difficulty with your children.

I have yet to meet any parent of a child with special needs (or anyone else, for that matter!) who always lives their best life. It’s not that you’re having just one bad day, it’s more like hard weeks and months where you don’t know how you’re going to accomplish mundane chores, let alone anything of significance.

So you don’t.

At least I didn’t during this time. If that meant binge watching Netflix for a break, so be it.

All too often when we parent children with disabilities, our world feels overwhelming at the best of times, running parallel to a world we imagine other families with typically developing children experience. And then, when a few more unexpected difficulties arise, it can feel almost impossible to endure. But at these times, more than any other, we must remember that life, while not always changing as fast as we’d like during the bad times, does in fact, eventually change.

Like with us.

Somehow beginning in January a whole bunch of good things have happened. One of the largest miracles is that (knock wood) Jack’s medications have now begun to work in harmony with each other, due to the perfect balance for him with dosing. Now Jack sleeps at night. It is a miracle.

This is the longest period of time he has ever slept regularly. In his entire 17 years of life.

Even before his wacky sleep due to a medication, Mike or I would get up with him in the middle of the night at least a few nights per week during his “good” sleeping times. Of course we did try to sleep some when he was awake, but it was a taut, strained type of sleep, colored with guilt.

So what I’m really trying to say is this. One day you’re minding your own business and out of left field, life changes in an instant, and that may be a bad thing. But then again, the events of January have taught me that good things can happen unexpectedly too. Even if something changes in Jack’s sleep again, no one can take away this gift of a “good sleep intermission.” I will take this blessing as the cushion I need when the next (hopefully metaphorical) bus hits me. For it will happen, sooner or later. Good thing I have Netflix.

R.I.P. Honda Fit. Thanks for keeping us safe!

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What’s the Big Deal Anyway? When You’re Afraid You’re Being Too Demanding.

Kristen Groseclose — Sun, 24 Nov 2019 17:22:13 +0000

Some thoughts on micro-barriers.

Photo by Mike Goad from Pixabay

“Change does not roll on the wheels of inevitability, but comes through continuous struggle.”
Martin Luther King Jr.

PHOTO-BOMB

A teacher friend of mine told me this story about waiting in line at school with a first grader in a wheelchair. It was picture day and my friend’s task was to bring the boy, who has profound disabilities, to get his picture taken. As the picture line snaked about to its final destination, my friend realized there was a problem.

The line terminated on stage in the auditorium and to get there, you had to go up a series of steps. There was no ramp. No one had considered those kids with physical disabilities when they arranged the photo op.

After an awkward conversation directing the photographers to move all of the equipment off of the stage onto the ground to accommodate this little boy, (oh, the inconvenience!) the problem was solved.

Another story:

A few years ago, our son Jack had his pictures scheduled for the day before his first day of junior high. My poor husband Mike took him to the photographer at the appointed time solo, because I wasn’t able to come. Since Jack can’t stand for long periods of time, Mike asked the photographer for a chair so Jack could sit down while having his picture taken. Otherwise, he’d just collapse onto the ground.

The photographer refused Mike’s request because “everyone stands when they get their picture taken” and it would “take too long” to get a chair for Jack. Already drained from the struggle to get Jack to school, and against his better judgement, Mike complied.

And so, as Mike predicted, Jack collapsed to the ground. Mike would haul jelly-legged Jack to standing before each failed photo attempt. You can only imagine Mike’s impossible dream of propping up 100 pounds of Jack for just one damn picture where his head was in the general direction of the camera.

The line grew longer. Time was passing. Kids openly staring.

Mike’s cheeks burned as a trickle of sweat rolled down his back.

Finally, the photographer put an end to this torture (time was a-wastin’!) and came to his own conclusion that yes, Jack did need a chair. Only then was the decision made to get one.

BATHROOM BLUES

And yet another example:

We were at an annual multi-hour family event during the summer years ago. The powers-that-be decided that regular bathrooms in the building should be locked and unavailable to the public, so as to eliminate the mess and waste that comes with such large gatherings. Only a few stuffy and cramped port-a-potties were outside to answer nature’s call.

(Highly impractical when you must assist someone your own size with their toileting).

I could have called a meeting/written a letter/made some noise in the hopes of getting accommodations for those with disabilities in future events. But I didn’t. Instead, that day I left early with Jack. Jack and I did not attend on subsequent years. It was just simpler that way.

As a parent, it’s easy for me to speak up about the big issues concerning Jack, but it’s the tiny daily issues that get me. Death by 1,000 paper cuts.

I used to think that because there are so many big issues to deal with, I shouldn’t address the inconveniences and inaccessibility that crops up for Jack on a daily basis. But I’ve come to question how often I use that reasoning as a justification that lets me off the hook.

ROLE MODEL

I just got back from a disability conference this week where I listened to an amazing woman, Haben Girma. She is a Harvard-educated disability rights lawyer and advocate, who just happens to be blind and deaf.

She shared the following story:

When Haben was a freshman in college, the cafeteria was a minefield. Initially there were no accommodations for her disability and so, since she is blind and deaf, she relied on her sense of smell to know what was being served — an unfortunate situation for anyone to be in, and especially when you’re a vegetarian like she is!

One day, she summoned up her courage to request a daily menu emailed to her that she could access through her special communication device. The manager refused.

“It’s too much work to do for just for one person,” he said.

So she went home and did her research. She learned that federal law said he had to accommodate her disabilities.

The next day she went back and told the manager that his refusal was illegal and that she would retain a lawyer if he didn’t comply. And so he did. In that moment, a disability advocate was born.

She went on to say that over time she realized that because she spoke out, it made it easier for those down the road with disabilities. In fact, the next student who attended the college did not have to fight that particular battle for inclusion. Haben had already won it.

Haben used this story to illustrate the series of what she terms “micro-barriers” that people in the disability community face. She put language around something I previously had no words for.

GETTING THROUGH THE DAY

I’m sure we can all agree that parenting all by itself is exhausting. But when you add a series of micro-barriers to your day, that feeling grows exponentially.

How often is that we don’t even consciously notice these little mini-obstacles that we awkwardly hurdle as we sprint through our days? How much time and energy do we, who are directly and indirectly impacted by disabilities, contort ourselves to fit into a world not designed for those who are different? Is it better to continue on accepting things as they are, or is it more important to speak up for accommodations, regardless of our own discomfort?

That being said, sometimes we are just hanging on by our fingernails and advocacy is just a bridge too far. That’s happened to me. I’ve had seasons where all I can do is to get through the day. The unfortunate reality for all of us is that there are times we must live in survival mode. And that’s ok.

But maybe the question we must ask ourselves when we are in a good place psychologically, but are confronted with yet another obstacle–a picture day, a port-a-potty, an inaccessible menu–is this:

Am I avoiding a confrontation because I don’t have the capacity to advocate right now? Or am I simply avoiding a conflict because it’s psychologically easier?

LOOKING FORWARD

I regret that I didn’t take a stand with the port-a-potty. The event where the restrooms were locked doesn’t happen anymore. So it’s too late for me to do anything about it. But I can’t help but wonder what would have happened if I spoke up.

Maybe I would’ve made life easier for others who also needed an accessible bathroom, even if I did choose not to return with Jack.

But as Maya Angelou once said, “When you know better, you do better.”

And so I press on, trying to be more aware and learn from the mistakes of my past.

I’d like to offer this thought too: Countless parents and disability advocates throughout history have fought for accommodations and legal protections so I don’t have to for Jack. And people such as Haben Girma continue to do so on the world stage.

CALL TO ACTION

With all the advocacy that has benefited Jack, the least I can do is speak up when Jack faces a micro-barrier in our own community. Sure, there’s always the chance that I may be unsuccessful, but who knows? Maybe I’ll plant the seed for change that will blossom somewhere down the road. And there’s always the chance that the advocacy will work sooner than I might think.

I urge us all who are in a stable place in our lives, to think not only about our own children and families, but about those who come after us, who may not be in a position to advocate for themselves.

If no one makes an effort, then nothing ever changes. What do we have to lose? As Haben Girma would say, just a micro-barrier.

Photo by Caro Sodar on Pixabay

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Feeling Stuck? A Different Way To Handle Monotonous Repetition

Kristen Groseclose — Mon, 30 Sep 2019 05:00:38 +0000

A bathroom meditation.

Image by Tomáš Lhotský from Pixabay

Have you ever just had one of those days where you ask yourself, What just happened?

You’re exhausted, but have nothing really tangible to show for your efforts that day. Because for the past few weeks, months, years or decades you’ve been pouring your life force into cleaning, grooming dressing, and toileting someone else in addition to yourself.

When you have a child with special needs, who depends on you for even these most basic of tasks, you may have many of these days.

It’s easy to fall into despair and feel that things will never change.

During these times, your life may seem frozen like a prehistoric bug trapped in amber.

I have had that feeling many times over the years—especially during the early years. Or even now when I’m tired and must take my teenage son, Jack, to the bathroom for the umpteenth time that day.

On some days Jack doesn’t want to go, yet doesn’t want to leave the bathroom either. You know what I mean. You live it too.

And it’s always right before a bathroom trip that I see pictures of someone else’s fabulous vacation. Or hear about someone else’s concrete personal triumph—a marathon won, a degree earned, a promotion accepted.

Usually I’m happy for other people’s good news, but when I’m tired and cranky, jealousy can worm its way through my heart and eat at my soul.

There was a time, maybe 10 years ago, when I could barely contain my solo pity party. My friends with their typically developing children were leaving their potty-training, diaper changing days behind and were getting their groove back.

(Or that’s how I saw it while I perched on the tub (next to the toilet) encouraging Jack to try one more time.)

There were some days I’d even calculate how long I spent that day in the bathroom, and feel depressed by the answer.

It’s so easy to fall into a rut of despair. You might even at times silently resent your child, whom you love so much and would gladly give your life for.

The reality is, you might very well be managing your child’s life physically (by caregiving), or mentally (by overseeing those who do), until you yourself need assistance caring for yourself (if you live that long).

We can use this harsh truth to consume us with existential gloom, or we can do what is in our control.

How?

The first step towards inner peace with our journey is to change how we view the repetitious, mundane, yet necessary tasks of caregiving.

I have had plenty of time to meditate on such things. In fact, much of what you read in my blog comes from reflections during my hours of mind-numbing vigil in the bathroom.

Over the years, I’ve evolved from thinking about caregiving as a prison sentence of sorts (for a crime I didn’t know I committed), to a far-less charged, bitter and desolate interpretation.

It was when I stumbled upon the bricklayer story years ago that I began the shift in my perspective.

The Story of 3 Bricklayers

“Once there were 3 bricklayers. Each one of them was asked what they were doing.

The first man answered gruffly, ‘I’m laying bricks.’

The second man replied, ‘I’m putting up a wall.’

But the third man said enthusiastically and with pride, ‘I’m building a cathedral.'”

–Author Unknown

I can think about the caregiving jobs my husband Mike and I must do for Jack as Sisyphean tasks extending out towards infinity, or I can choose to look at these things a different way. I know that when we take Jack to the bathroom for his needs, he will come out clean, dry and comfortable.

It doesn’t look as glamorous as the big parenting wins often dramatized on social media. It’s just a tiny victory of fighting the inertia within ourselves to move from the couch yet again and take care of business. And this triumph is a bit of grace that we can give to ourselves when no one is looking.

Our tasks can be looked at as an unfair curse brought down upon ourselves and our children by an unfeeling God, or we can see these responsibilities as tangible reminders of our love.

Some days will feel bad no matter our outlook and we will do what we can to survive those times. But when we wake up the next morning, let’s see it as a fresh start to manage our expectations of ourselves and take pride in our caregiving.

Many people would die for their children, including us. How about we turn this sentiment around and really live for them too? Let’s view the small, monotonous, daily chores we do as actions of love.

What we must do every day absolutely has a larger meaning. Just ask the third bricklayer.

(I need to go now. Duty calls.)

It is the small things in life which count; it is the inconsequential leak which empties the biggest reservoir.

Charles Comiskey

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The Life You Didn’t Choose: Navigating The Terrain Of A New Normal (Part II)

Kristen Groseclose — Wed, 04 Sep 2019 16:51:17 +0000

The Aftermath.

Photo by SplitShire on Pixabay

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kübler-Ross

In Part I, I wrote about the challenges facing special needs parents in the early days of shock and grief at diagnosis and how these painful experiences can serve as the foundation for empathy.

This week I’d like to write about what happens when the initial shock fades.

What happens in these months and years after your life has upended? As I mentioned in Part I, I write from the perspective of a special needs parent. My journey may look different from those grappling with death, or health crises or any trauma, really. But in the feeling of grief, our situations can rhyme.

So it’s been a year or two after the shock. The dust has settled, more or less.

You’ve grudgingly begun to acclimate to your new normal. Much as you want to remain in the fetal position, you have your child to care for—possibly other children too. The numbness wears off and your life crawls forward– even if your child can’t.

After a while, friends and family suggest you try support groups to develop friendships with people in your boat. Makes perfect sense. You would have offered the same tip, had the situation been reversed.

(Though part of you worries that they suggest this because you’re oversharing your pain. You don’t want to be a burden!)

But the thought of unloading your feelings in a roomful of strangers (also in pain) doesn’t seem inviting, so you keep your head down. You keep moving.

One step forward, three steps back during the rough spells. Vacillation between optimism and despair—often in the same hour. This universal sorrow feels shameful and traitorous to our children with disabilities. And you worry about the future—what will happen when you’re gone?

We love our children fiercely, yet grieve when they suffer in a world not easily accommodating to their needs. This feeling of love laced through with pain is complicated and hard to admit, even to ourselves.

Because we’re so afraid others won’t understand—and that they might even judge us more harshly than we judge ourselves. But shame won’t help us. And it won’t help our children. It helps to remember that we are imperfect parents in a messed up world just doing the best we can.

After a while, you get sick of the self-defeating thoughts whirling about your head. You want more out of life for yourself and your family.

The harsh reality is this: people can feel sorry for you, you can feel sorry for you, heck, even your therapist can join in– but it won’t change a thing.

These are the cards you are dealt. You must play them the best way that you can.

Gradually your perspective will evolve too. It won’t always feel like the way it does in the early years. You will make a wobbly peace with your sadness and will feel joy and happiness and pain and sorrow in ways that have nothing and everything to do with your child. And most of all, you’ll find acceptance.

And you will marvel about that.

But there will always be a part of you still in shock that your child has a disability. And grief may appear out of nowhere, but in my experience, it will last for a briefer time than in the early days.

You’ll discover a resiliency within yourself you hadn’t had before. But this resiliency comes at a price. It is the direct result of spiritual growing pains you feel during those difficult times, the hours and days you don’t think you can bear.

In my case, Jack will always have high needs. But I only get one life. Do I want to spend it angry, bitter and limited in my capacity to appreciate the world around me? Or do I want to move forward. It took me a while to get to that place of peace, but I got there.

It sure wasn’t on my timeline, though.

How did it happen? It appeared when I wasn’t looking. I simply trudged forward and did the stuff our family needed to have done. I took Jack to appointments and took care of his sibling. I worked part time. Sought out therapy and support of my friends and family and finally, I simply endured.

But I can’t rest now. I must keep moving forward. Our situation demands it.

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
Theodore Roosevelt

I sometimes miss the former version of me, the person who lived in a world where things made sense and setbacks were temporary. Yet my experiences have shown me despite the pain, I have also experienced the beautiful, unknowable mysteries of the world that were not readily apparent to my former self.

If I could have traded my hard-won insight for Jack developing typically, I’d do it in a heartbeat. But life doesn’t work like that. So I hike onward, using my challenging experiences to forge a new path and purpose. And I have a compass handy to navigate me through this sometimes difficult terrain.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”
haruki murakami

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The Life You Didn’t Choose: Navigating The Terrain Of A New Normal (Part I)

Kristen Groseclose — Fri, 16 Aug 2019 15:48:22 +0000

When events leave you no other choice.

Photo by ArtTower on Pixabay

When your world collapses, nothing seems to matter. Basic hygiene becomes an accomplishment, instead of the prelude to accomplishments. You wonder how early is too early to go to bed and you look forward to sinking into oblivion. That is, if you’re feeling depressed, not anxious. If anxiety takes hold, then it’s an all-night vigil with just you and your thoughts.

Yet you still brush your teeth. Pay your bills to keep the lights on, the water running. Go through the motions. And all the while you gaze towards the land where things were “normal,” where you were “normal.” The place you lived before everything changed.

Our culture encourages everyone to bury their grief and pretend things are fine. So you may feel like a failure if you’re struggling to function. I know I did at first. The last thing I felt like doing was following social niceties. Because on December 8, 2003, we were told by a doctor that our son Jack had severe cognitive and physical challenges of unknown origins and would never live independently.

But facing your sorrow with self-compassion is critical to eventually inhabiting this new reality with peace. True, this is a life you did not choose, but it is the life you were given nonetheless. There is a difference between self-reflection and wallowing, of course. That’s what many people fear, I think.

But really, it’s quite the opposite: if you work towards finding harmony within yourself, you’ll be able to dwell in your new reality with an open heart and renewed purpose outside of your pain.

I’ve thought about this topic a lot lately, especially since there are those close to me in my life, as well as countless others in the news, who are suffering staggering losses much harder than mine: loss of a loved one, loss of their health, loss of their dreams of how their lives will unfold.

Like us, they have become the Name, You know, the one who… And they too begin the journey of adjustment. I pray for them and send them strength. So this post is for all of us whose worlds have been turned upside-down. I write from the perspective of a special needs parent, which has its own particular flavor of sorrow, but as I’ve gotten older, I realize that grief, isolating though it may feel, is universal. It is a part of life, one manifestation of the human condition, not unique to a particular circumstance.

The dates, the details, the diagnosis or lack thereof may differ among us, but the essential truth of the feelings remains the same:

Essentially, it all boils down to this: your world is rocked and you are left mute by the force of your despair.

When you first share the news, everyone is as stunned as you are. You cry, and everyone else cries too. They listen to your endless recitation of what happened at the pediatrician’s, how you found out, the diagnosis if you have one, the prognosis even if you don’t. Reciting the story over and over again still doesn’t make it real. You hug and take comfort in your family and friends, grateful for their love.

But after the initial shock, life moves forward…for everyone else. They’ve accepted that you have joined the ranks of a different club that no one wants to join. Your name expands when people mention you to others in conversation. You suddenly get an unwanted promotion from just Name, to Name, you know, the one I was telling you about who has that poor child... Forget about any of your other personality traits, career choices, accomplishments. This is now your moniker, (your label?), you’re the one who has that child.

Yet you understand this. Heck, before your life changed, you would’ve used that shorthand for others, so you totally get it. You don’t blame anyone. But it hurts all the same. Because now it is you.

At first, you’ll find yourself hiding out from the world. In the safety of your home, you can try and forget the visions you had for your family, what life was going to be. But then you eventually get claustrophobic, the walls closing in on you, boredom.

You convince yourself that you need to get out with your family. And do what other families do so you can feel normal. So you get out, vulnerable as a newly hatched chick, at the mercy of onlookers, both real and imagined. You scan your surroundings like a hunted animal, posture rigid, wary of your child creating any “scenes.” You feel eyes upon you and your family.

People remember meeting you, yet sometimes, embarrassingly, you introduce yourself to them multiple times. Because in public you are half-distracted by corralling your child, finding exit strategies, and supporting your typically developing child, who cringes at the stares.

Unbeknownst to you, you’ve become the goodwill ambassador for special needs families everywhere, a job you didn’t sign up for. But on the good days you do want to help promote awareness. And live up to everyone’s expectations of having patience and dignity, traits often kindly bestowed on families like us.

But on bad days you just want to hide, to blend in. Like when I just want to go to the damn grocery store and dash in without it having to be a “thing” executed with military precision, with strangers avidly watching me pull Jack off the ground for the umpteenth time. Because he decided the sensory input of his tongue against the cool lineoleum’d floor was exactly what he needed. (True story). I wrestle him to standing, trying to ignore my intrusive thoughts of germs and filth and God-knows –what-else covering the ground at my local Kroger’s.

Over time you’ll get used to the looks and not notice them (as much). And you’ll realize most of the stares are not cruel or judgmental, just curious or sympathetic. Or even empathetic. Because there will be some who will whisper to you, as you wrangle your child from place to place in the community, Hang in there. I know how you feel, my kid has autism, or Downs Syndrome or any variety of syndromes that veers a child away from what’s typical. They’re part of your club, their eyes are knowing.

You will be amazed about people. The obtuseness of some, yes, but you will also encounter kindness and generosity of spirit beyond your wildest dreams. You will shed some relationships like an old skin, a casualty of this new life. Yet those relationships that remain will deepen.

We can dwell on the loss of some superficial relationships or on the times someone says something insensitive, but I don’t recommend it. Instead, we can use those times to highlight and appreciate those who do provide the tact, love and solace we seek. Some of these people will be friends, some will be family, and some will be the professionals we encounter along the way.

Most will not be in our boat, but that they try to understand how we feel means the world. Those who ask you how you’re doing and really want to know the answer. Bask in their warmth and treasure this gift of human connection.

And then pass that along. We can love and support others in their pain by remembering the darkness we also have faced. Let’s walk beside them and give of ourselves. Others’ suffering can be different, but let’s listen with an open heart, sitting together in the darkness, holding their hand, not saying a word.

The post The Life You Didn’t Choose: Navigating The Terrain Of A New Normal (Part I) appeared first on Smith-Kingsmore Syndrome.

Coping with Grief

Kristen Groseclose — Thu, 08 Aug 2019 06:14:51 +0000

My thoughts on prayers.

Photo by Myriams-Fotos on Pixabay

“You and everyone else has given me their prayers. These prayers don’t seem to be working at all!” My older, very outspoken neighbor said this to me yesterday when I bumped into her on my walk.

Apart from a friendly wave at a distance as I rushed from my house, I hadn’t really talked with her in ages and so she had been telling me of her difficult circumstances over the past year. Both she and her husband face some very scary health crises on top of other serious chronic conditions. Even her beloved dog Bandit was in poor health, his tremors visible as he waited patiently by her side while she spoke.

After she shared her hardships, I said the thing everyone does in these difficult situations–that she and her husband were in my prayers. Her face hardened and that’s when she said it. Though she sounded disgusted, it wasn’t that. It came from a place of raw pain.

I don’t think she expected my response.

While looking her straight in the eye, I told her the following:

I’m not praying for your illness to be cured, or even your husband’s. I don’t believe God has a hierarchy of whose prayer gets answered or selects who deserves a miracle based on prayer volume and that everyone else is out of luck. No, my prayer for you is this: I pray that you receive the strength you need to endure your painful situation.

Now everyone has their own religious beliefs or non-belief systems and I’m not someone who judges one values construct superior to another—that’s your own personal business. And so I’d never been one to jump into religious conversations with people, especially ones I barely know, but here’s another way having a child with special needs indelibly changed me over time.

Since my son Jack has struggled over the past 16 years with all sorts of cognitive and physical challenges, it has forced me to confront my spirituality, if only to make sense of this life-altering situation I find myself in. Maybe you feel this way too.

When Jack was a baby and first diagnosed with severe developmental delays, I’ll admit, my faith was shaken. I raged against the suffering of my innocent child.

Why him? Why us?

And why, for example, are there some people who drink, smoke or use drugs, yet whose children develop typically, and my child didn’t, even though I religiously followed those pregnancy books? It was so unfair. Jack didn’t deserve this.

At first, I prayed that God would intervene and take away his disabilities through therapies, diet or medications and that we could put this painful chapter of our lives behind us and move on.

That didn’t happen.

Over time, the enormity of his challenges revealed itself and the gap between his development and his typically developing peers grew to the size of the Grand Canyon. And then his seemingly endless cycles of screaming and self-harm began. After a while, I stopped going to church. What was the point?

I looked around me and found countless examples of situations that seemed senseless and wrong and unfair.

Why should I pray to a God who lets so many good people suffer and even die?

In my heartache, I felt myself grow more cynical. If I didn’t figure out a way to get some spiritual solace for myself, I realized anger and bitterness would consume me.

And it wouldn’t change a damn thing.

The soul becomes dyed with the color of its thoughts.
Marcus Aurelius

Gradually I realized how faith could shape the stories I told myself to make sense of the bad stuff and greatly impact how well I coped. And why telling myself despairing stories made me suffer a second time, apart from Jack’s actual situation.

So I read countless books on Stoic philosophy, self-help and Viktor Frankl’s Man’s Search for Meaning to make sense of it all. And I keep reading even today.

I talked to my therapist, my husband Mike, my in-laws, my best friends—let’s be honest, I spoke with practically anyone close to me who had the misfortune to be in my path while I was needing to work this all out! And I can honestly say, thanks to everyone, (for it takes a village), work it out, I did.

And so I have begun to attend mass again on a semi-regular basis. Not so that God will grant me what I hope for, but for the strength to keep going as I struggle.

I realize now that praying for outcomes doesn’t always work. And even when miracles happen, they can be random and not because masses of people prayed for it. I know that sounds harsh, but if I could believe that God answers some people’s prayers, then what about those who don’t get what they hope for? I don’t believe God ignores certain people as a way to punish them because they weren’t virtuous enough or praying sufficiently.

Do not pray for an easy life, pray for the strength to endure a difficult one.
Bruce Lee

Ultimately, we have no more control of many painful outcomes than I do when I contort my body at the bowling alley after releasing the ball from my awkward grip. My “go-to” move is twisting myself into a pretzel as I watch the ball make its way slowly down the lane. It’s my way to “direct” the bowling ball away from the gutter, and maybe even knock down a pin or two. As you might guess, rarely does this work. That, like praying for specific outcomes, is magical thinking.

Instead, praying for strength and peace for ourselves and for others, grants us a tiny bit of grace from God. For non-believers, consider it the power of suggestion. And we’re better able to appreciate all the goodness in the world rather than being reduced to resenting people who have what we want.

I ask not for a lighter burden, but for broader shoulders.
Jewish Proverb

And how did my neighbor, this suffering woman at the end of her rope, respond to my prayer clarification? She actually blinked in surprise. Then she grinned and replied, Hmmm. Prayers for strength to endure. I like that. I really really do. She waved farewell. I turned and watched her walk away a bit unsteadily, a smile still playing on her lips, loyal Bandit bravely at her side.

What is to give light must endure burning.
Viktor Frankl

The post Coping with Grief appeared first on Smith-Kingsmore Syndrome.

Adversity’s Syllabus

Kristen Groseclose — Tue, 06 Aug 2019 01:20:30 +0000

Photo by Tim King on Unsplash

Those who have a ‘why’ to live, can bear with almost any ‘how.’
Viktor Frankl

“Why does everything I do as a parent feel so impossibly hard?” I sobbed as I posed this question to my then-therapist, Dr. G.

Mike and I were in a particularly hellish time trying to parent Jack, my now teenage son with special needs. At this point, Jack was only 5 and he flailed about in both psychological and physical pain day and night for 6 months.

Jack’s seemingly endless needs threatened to consume me as I stared into my own personal abyss. My unhelpful mind screamed how I was the biggest failure of a mother. That both of my children deserved better than they got.

Dr. G paused until my ugly-cry faded into a few self-pitying snuffles. Then he said something I’ve never forgotten.

If parenting a child with typical development is like working towards your Master’s degree in life, then having a child with special needs is like participating in a decades-long PhD program.
–Dr. G.

I never forgot his insight.

Now I don’t think special needs parenting is the only way to work towards your doctorate in life, of course. Any event that flips your perspective shakes it upside-down, then flips it back upright, the pieces of your previous life fluttering around you like as in a snow-globe, counts as advanced coursework. In other words, any draining, permanent, life-altering situation will do. Any situation that having occurred makes you delineate how you were as a person “before” versus “after” the event.

Since my challenges with special needs parenting was the PhD program selected for my life thus far, it is from this perspective I can write.

Some of you experience this situation, plus additional challenges too. And you may feel like you’re up against insurmountable odds. And who’s to say another curveball isn’t waiting around the corner for me as well? So we must prepare ourselves as best we can to go forth and live purposeful, intentional lives while limiting the unhelpful self-pity that may surface on hard days.

When we are no longer able to change a situation, we are challenged to change ourselves.
Viktor Frankl

How can we do this?

Here’s what I do. I seek out personal true accounts of those grappling with their own adversity, especially ones foreign to my own life experience. Learning about the human condition from these different types of books inspires and comforts me. Different voices and different stories can serve as signposts during the days I feel hopelessly lost. They give me various blueprints as how to design a collection of days into a meaningful life.

Because like it or not, as a special needs parent, my life is joined with Jack’s. The shape of my days dictated by the ever-evolving intensity of his care.

I am reminded of this reality since Jack’s on his summer break from school. My free time reduced and contingent upon the whims of Jack’s bodily functions and needs. I have temporarily lost that precious window of time during the school day for my own self-care, walks, errands and writing. These things are now stolen moments packed in around Jack’s meal times, snack times, bathroom times, and bathing times. But sometimes they don’t happen at all despite my best efforts and intentions. Because yeah, I get tired. And I know you do too.

I take this reality better than I used to, I think. Maybe because I’ve absorbed some of those books, those true stories of hardships more challenging than mine. I think they help me gain a tentative acceptance of our circumstances, as well as a greater appreciation of everything good in my life.

Extraordinary actions often come from the most ordinary people. Stories of struggle, hardship and despair often show people achieving a hard won acceptance. This is its own victory and helps me way more than some unrealistic happy ending.

I marvel at the grace of those whose character was honed through heart-rending, circumstances. They who have experienced untold horrors that I hope to never know, yet can still appreciate goodness. Those are my teachers in our graduate school of life.

Man is that being who invented the gas chambers of Auschwitz; however, he is also that being who entered those chambers upright, with the Lord’s Prayer or the Shema Yisrael on his lips.
Viktor Frankl

Here’s a few books I’ve read recently that have helped me . I hope they can do the same for you. Most of them are memoirs.

Man’s Search for Meaning by Viktor Frankel (Written by a neurologist/psychiatrist who survived Auschwitz during the Holocaust. I can’t recommend this book enough.)

Wild by Cheryl Strayed (Written by a novice hiker who journeyed the Pacific Crest Trail solo in a search for herself).

Formation by Ryan Leigh Dostie (Written by a former female Army recruit who navigates a male dominated field.)

A Nearly Normal Life by Charles L. Mee (Written by a man who contracted Polio in the 1950s just as the vaccine was coming onto the market).

Nothing To Envy: Ordinary Lives in North Korea by Barbara Demick (This journalist interviews refugees from North Korea in order to understand daily life in that mysterious nation.)

The File by Timothy Garton Ash (Written by a man who lived in the former East German police state and later discovered the secret police file created on him).

Fall Down 7 Times Get Up 8 by Naoki Higashida (Written by a man who has extreme nonverbal autism and how he perceives the world around him)

The Russians by Hedrick Smith (This book is out of print but can be found in second hand bookstores. It’s an interesting look at Russia circa 1975. Honestly, I didn’t enjoy the 1990 sequel as much).

The post Adversity’s Syllabus appeared first on Smith-Kingsmore Syndrome.

Scary Bad Feelings Are Part Of The Package

Kristen Groseclose — Mon, 08 Jul 2019 12:38:07 +0000

Photo by 12019 on Pixabay

Confronting our darkness brings fear down to size.

“If we forbid ourselves to talk negatively about something, we block the awareness of grievances that need an airing as a prelude to dealing with them.”
Chris Johston

Good feelings are easy, right? Like when Jack looks at me and smiles, laughs at a joke (usually at my expense!), or does something positive he’s never done before, I want to shout it from the rooftops. I bask in the glow of kind words of support from those around me.

But I know this is easy talk, because everyone loves a feel-good story. I know I do. My heart melts every time a child with autism throws a 3 point shot in a basketball game or suddenly communicates with an augmentative speech device after 15 years of silence.

We live in a world not designed for those different. So we proclaim these good news stories of our kids to friends, family, and strangers, even. And we cling to those rare extraordinary special needs parents’ success stories we see on television with a combination of hope and envy. We search for parallels to our own situations, praying that our children have their own miracles.

Because who knows? This one positive event of a smile, a laugh, or any sort of engagement, really, could be a turning point. A breakthrough. The day all of our research, our sacrifices and our faith pays off. Because of course we want an easier life– for them and for us.

But one of our biggest challenges comes in sharing the not-so-attractive emotions raising children with special needs. Boredom. Despair. Depression. Rage. Apathy. Anxiety. Because those are part of the mix too.

When society pummels you with well-intentioned messages like “God gives special children to special parents” and “You are a saint. I don’t know how you do it,” the tendency can be to clam up.

On your rough days, you don’t want to disturb the notion that you don’t measure up to the imagined or expected ideal. And the fear that if you voice your less positive thoughts, you will fall short and be judged harshly.

But we are human and fallible. I’ve found a sense of freedom in truly acknowledging that in myself.

Children with challenges don’t suddenly vault us to the front of the line when it comes to saintly characteristics. We are still the same flawed people we were before we took on this role as a special needs parent. Now we are flawed people trying to manage the best we can under tremendous stress. Our struggles merely amplify and reveal the positive and negative traits we already have.

You may want to deny having those less than altruistic feelings—to yourself and to others. But by biting our tongues and denying our emotions we do ourselves a disservice.

When we make a habit of shoving those feelings down unacknowledged, they grow to have more power over us. Therein lies the danger. When we feel depressed and ashamed of our parenting frailties, it’s easy to turn to unhelpful coping mechanisms to numb ourselves. Besides, denial is exhausting! I don’t know about you, but I’m tired enough!

Of course, there’s a time and a place for emotional honesty. I don’t recommend dumping in the middle of a party or anything, of course. And maybe there are some in your life who aren’t up for the challenge to be your sounding board and support. So don’t tell them. But if you do have people you trust, give them the opportunity to help you and be honest—it releases you from shame.

And then who knows? They see the real you and they feel comfortable to open up about their own feelings and struggles that you can support them through. Because putting on a façade gets old. Pretending we are perfect is boring and unhelpful. What we do is hard enough without adding unnecessary drags on our energy.

If you don’t feel comfortable opening up to friends or family, consider seeking professional support to help you through your feelings. Sometimes voicing aloud the dark feelings you have makes them less scary. Besides therapists have heard it all. What can be expressed can be manageable.

Or maybe you can seek out online communities where you can vent and support other families going through similar issues. Through community there is strength.

What’s helped me over the years is the gradual realization that every emotion good or bad has been felt a billion times over by those who’ve come before me. I take comfort in my ordinariness. I’m not a monster. Just a sometimes cranky, often sleep-deprived, mostly well-intentioned person just doing the best I can. We all are.

“When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”
Fred Rogers

The post Scary Bad Feelings Are Part Of The Package appeared first on Smith-Kingsmore Syndrome.

The Ripple Effect

Kristen Groseclose — Fri, 31 May 2019 17:31:06 +0000

Events can take on a life of their own…though not always on our timetable

Image by Gerd Altmann from Pixabay

Do you ever feel those days where you can’t get outside of your head? The days you are dragging, going through the motions, wondering if what you do even matters? If things will ever get better? I certainly have.

Especially when my kids were little and I was scared, sleep deprived and stressed. Nothing ever changed. Getting out of bed was an act of will.

And I’d think, This is my normal. For the rest of my life I will always be responsible for my son Jack who has special needs. My own personal life sentence with no possibility of parole.

My friends had been liberated from changing diapers years before, but that would never be me. Each day would be forever marked in 2 ½ hour intervals, the time I had between Jack’s changings.

Placing my then-8 year old son Jack on the toilet before I gave him a fresh diaper, I’d sit on the floor, mentally calculating how many hours I spent in the bathroom for bodily functions not even my own.

I’d marinate in frustration, I could write the great American novel with all the time I spend caring for Jack’s never-ending needs. (I could’ve taught the master class in self-pity back then, because writing such a tome has never even been a goal of mine.) Years of caregiving stretching out to my eventual demise.

I’m sure I was real fun at cocktail parties back then. Oh wait, I forgot. I didn’t go to any. I had no social life. Teenage babysitters with the ability to care for Jack didn’t exactly grow on trees.

I felt like nothing ever happened. Nothing would ever change.

Yet sometimes incredible events can come together in ways that we can’t even imagine in dark times. Unfortunately, they won’t happen on our timetable. Sometimes the effects can take years to reveal themselves. That happened to us.

Years before Jack received any sort of concrete diagnosis, our family bumped into a man pushing his developmentally disabled adult son in a wheelchair. We were all waiting for an elevator to a parking garage.

We smiled pleasantly at each other and then the man looked over at Jack and said, “Oh, is he an Angelman’s kid too?” His son had received this genetic diagnosis. Our elevator came, we went to our cars and we never saw him again.

Yet he changed our life.

As we drove home, I googled Angelman Syndrome. And others like it. Mike fell down the rabbit hole of researching genetic disorders and reaching out to specialists. Our hope soared. This was a sign. It had to be.

We eagerly made an appointment at our hospital’s genetics department, our first visit in 8 years.

Our fragile peace with never knowing what Jack had was shattered by that man in the Kenwood Mall. His question inspired us to endure a new round of genetic testing. We wanted to believe science had caught up with the mysteries of our son.

That stranger and his question took on mythic proportions.

We waited impatiently for results that would take weeks to obtain. Technicians took countless vials of blood from a stoic Jack and sent it to the lab.

They looked for 86 rare genetic syndromes. Surely they’d find something. After all, that unexpected meeting of the man by the elevator seemed like a sign!

But then the genetics counselor gently informed us, Sorry, there were no matches. Come back for a follow up in 3 years.

Mike and I were crushed. I felt silly and depressed at having imbued a stranger with other-worldly qualities. Like he was sent from Heaven to tell us. Who was I kidding?

Fast forward 3 years.

This time they had even more sophisticated genetic tests which took months to return. So we waited and I hoped we could check off this box and get on with our lives. It would be negative. It always was. My heart steeled itself against disappointment. We’d been down this road before.

Yet this time was different.

Against all odds, Jack got a diagnosis.

Which led us to a tiny private Facebook group for parents of children with Smith-Kingsmore Syndrome.

And inspired our creation of this website, vetted by researchers and linked to the National Institutes of Health (NIH).

And through Mike’s research of Jack’s genetic syndrome, we embarked on a promising, yet untested and undocumented treatment in April 2018.

So we created daily tracking sheets and monitored results which we compiled for our doctors so they could help our son.

Thanks to the Fitbit we strapped on Jack for sleep data, it uncovered undeniable proof of the bizarre sleep side effect of his meds, making his already less than ideal sleep worse. So we found Jack’s sleep specialist who rounds out the team of our amazing doctors.

Right before our appointment, this sleep doctor just so happened to have read a recent study where genetically altered mice were given the same medication Jack takes. Their similar genetic makeup to Jack, coupled with his exact medication, produced the same results we saw in our son. And the Fitbit gave us the data to prove it. This research paper, coupled with our appointment, served as the catalyst linking our sleep doctor with our geneticist and neurologist.

Now these 2 separate and distinct departments at Cincinnati Children’s collaborate on cases involving genetic disorders and sleep issues. In the past 5 months, 30–40 children have been impacted by this partnership and this number is expected to grow. And protocols are being developed to systematically target the sleep problems in these kids.

All because one man waiting for the elevator asked us one simple question to see if Jack was like his son. Quite a lot of ripples.

If you had told me when Jack was screaming and banging his head around the clock when he was 5 what our life would look like today, I’d have never believed you. And I might have thought the ripple effect happened to other people, not to me.

You may be struggling right now like I was back when Jack was little. Maybe you have small kids or are dealing with hard core medical issues. All the while you may be grieving the reality that you and your child will have a different path in life than is typical.

That’s hard and I wish it didn’t have to be like that for you and your family.

Just hang on.

That’s all you might be able to do right now and that is enough. Your love for your child is a ripple in itself, demonstrating to all who know you, an example of how love really is a verb.

And who knows? Maybe today is the day that you meet your own stranger, one who asks you a question that changes your life.

The post The Ripple Effect appeared first on Smith-Kingsmore Syndrome.

I Want To Live My Life The Way I Wear My Hair

Kristen Groseclose — Tue, 21 May 2019 15:48:54 +0000

Source: HoliHo on Pixabay

A comfort zone is a beautiful place but nothing ever grows there.
Unknown

A woman who cuts her hair is about to change her life.
Coco Chanel

You have such pretty hair. Don’t ever cut it. When I was 10, I had fine straight hair that flowed down my back. I must’ve seen that compliment as a dare, because suddenly I was obsessed with freedom from my hair’s tangled tyranny. My “go-to” pony-tailed style I wore every day to keep my hair out of my face suddenly seemed babyish.

Since it was the early 80s, all the cool high school girls I knew had sophisticated, feathered hair. I saw them board our bus that took the all the elementary and high school kids to Catholic school.

It helped too that they didn’t wear my hideous St. Ann’s uniform of a green and brown jumper with yellow peter pan collared blouse, set off by a matching green/brown snap tie. They got to wear the more refined (to my eye) Immaculata uniform of plaid skirts and tops in soothing shades of blue.

They’d laugh with the older boys, cracking their gum and casually running their fingers through their hair as they flirted. Their perfect curls would snap smartly into place. I envied them their swooping Farrah Fawcett hair, lush and full. If I had this cut, it would change my life. I would be popular. I would be beautiful.

Finally, after months of begging, my mom caved and we went to the salon. I squealed when the stylist spun me around to face the mirror. I loved my look.

For the rest of the day I felt my hair bouncing about my newly exposed collarbone. I felt sophisticated–like a girl on the cover of Seventeen magazine!

Staring in the mirror like Narcissus with his pond, I mimicked those preening gestures of the older girls. Look out 5^th grade, there’s a new cool girl in town! I felt giddy with possibility.

Unfortunately, reality stepped in the next morning. I struggled with recreating the look once it was just shaky-handed me, a curling iron and some aqua net hairspray. Who knew that it helped to actually be Farrah Fawcett and have her hair to achieve her look? Evidently I didn’t. The stylist didn’t let me in on that secret either.

But after some trial and error and a few forehead burns, I was able to execute a somewhat passable version of Farrah Fawcett’s look on my uncooperative hair. Surprisingly, my life didn’t change except if you count the diminished amount of shampoo and conditioner I needed. Still, I had no regrets—my long hair was annoying. I was free.

I think the magic of that day planted the seed for my career change in my mid-20s. I’m now that hairstylist who looks different each time you see me. I’ve tried almost every natural looking hair color and even a few unnatural ones. My hair has been past my collarbone and it’s been 3/8” on top of my head and every length in between.

I’ve been told how brave I am to experiment like that with my hair. I laugh uncomfortably because of how low the bar is set on bravery then—it’s not like I’m rushing into a burning building to rescue small children or anything. It’s just hair.

But it got me to thinking. I want to live my life the way I wear my hair. To allow curiosity and open-mindedness to influence my path in life. To think outside of the box. And not be so attached to the end result. I do this with my hair, why not my life?

Hair can teach me to observe the colors and shadings in my world and question everything. Ask if it’s necessary. Hold my plans lightly. When something stops working, adjust and move on. And don’t let fear dictate my decisions.

I realize now that extreme hair transformations have always been my way of jumping into the bracing waters of change. Because change will occur regardless. My son Jack will always have special needs, but he still evolves and matures. This requires my own transformation–just on the inside.

I know I have a long ways to go. Writing this blog was something I could never have imagined doing back when Jack was a baby and I had Early Intervention therapists cycling through our home. Or that I’ve now applied to a 9 month program to become a better advocate for my son and for others with cognitive disabilities. I may not get accepted, or if I do, I may fail spectacularly to balance my family, work and this new opportunity.

But that’s part of the excitement. The journey and the knowledge gained is the reward not the end result. Much like with my hair. After all, when I picked up my clippers for the first time to buzz off all my hair, my heart raced, but I kept on, excited by my liberation. But I hope I never decide to get the feathered look again. No way do I want to tango with a curling iron first thing in the morning. But at least this time I’ll be prepared. I trust my stylist, after all.

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