At the Heart of Special Needs

By Mark E. Smith

Annabelle was five when she came into my life. It was among my truest blessings, not just because of my own yearning to continue being a round-the-clock parent since my oldest daughter was finishing high school and going off to college, but because of the beautiful child Annabelle was. She exuded a joy and carefree zest for life that simply isn’t found in most people, even children.

Any time that we marry someone with children, it’s often said to be a “package deal,” but this union was far beyond such simple words. This was the universe bestowing me among the most precious gifts in my life – a wife and a second daughter.
We often hear of “special needs children.” In raising my oldest daughter, Emily, I always took issue with that term because every child has “special needs,” where our role as parents is to identify and meet each of our children’s needs, unique to that child. In raising Emily from birth through now graduate school, I’ve been aware of the many “special needs” she’s had along the way.

Annabelle, likewise has special needs. But, again, like all children, hers are unique. Annabelle has spina bifida and autism. She’s wicked smart and has a sense of humor that has those of us around her laughing most of the time, but she doesn’t have “typical” interpersonal interactions. There’s no I-love-you, which makes her hugging her mother or occasionally holding my hand so powerful within our hearts.

As a parent, my primary role is in working with my wife to ensure that Annabelle has everything she needs, from skilled nursing care, to a special bed, to her own play room that’s everything. Annabelle, her haven.

I didn’t realize how much Annabelle recognized me and my dedication to meeting her needs until one night in our van. Among her favorite items of engagement is her tablet, on which she watches children’s YouTube videos. She was on her tablet in our van while my wife was putting groceries in our house before we were going out again. Suddenly, Annabelle dropped her tablet in such a spot on the van floor that neither of us could seemingly get it. She was buckled in her car seat and my power chair was situated in such a way that when I backed up to get the tablet, it was under my power chair.

Annabelle became more and more upset, to a panicked degree. I realized that if I reclined my seat back, I may be able to grab the tablet. As I did so, it put me in proximity to Annabelle, and she begin patting my shoulder, repeating, “Mark! Mark! Mark!”

This moment was profound because she doesn’t address anyone by name, so her addressing me directly in her moment of desperation was both heartbreaking, as she was so upset, and breathtaking because she was reaching out to me for help.

Fortunately, I scooped up the tablet and handed it to her, crisis ended.

Annabelle’s father will rightfully always be such. However, being acknowledged as her “Mark” in her time of need was among the most heartfelt moments of my life. Indeed, there’s nothing more poignant as a parent than being there to meet our child’s “special need.”

Lighting Fires

By Mark E. Smith

Our 20-year-old is home for the weekend from college, work, and her own apartment in another state.

She and I are arranging logs in the fireplace. They’re not real logs, but ceramic ones.

“There’s a science to this,” I tell her, as she sits on her knees in front of our 19th-century fieldstone fireplace, first log in hand. “How the logs are positioned dictates gas flow, flame characteristics and heat efficiency.”

For almost 200 years, the fireplace in our farmhouse burned wood, but has been converted to a more-practical, modern gas set up. I push a button and it ignites. Not unlike what might happen with real wood, the ceramic logs fell out of place over the summer and now must be reset. My wife wanted to reset them weeks ago, with the fall chill, then the first dusting of snow. But, I asked to await the help of our daughter.

At her age, our daughter sees time as infinite. We all did. It’s like the stones in our fireplace that transcend mortality. How many fires have they seen come and go over generations? Yet, life is different – we learn that.

I, too, was once 20, with nothing but time. Then, I realized that time shifts as we age, becoming tangible. Life brings the abruptness of change and loss, and we awake one day with an intimate understanding of time – gone.

My daughter and I study the log installation guide and talk about her schooling as she carefully, methodically aligns each log in a lifelike but scripted pattern.

This all began when she was 10, helping me wash our van. It started as a chore, but as she moved into her adolescence and teenage years, the van was lost in the background to our father-daughter conversations, safety for all to come out, a bucket and water hose a ruse as to what it was truly going on, the talks and emotions. Those years, like the cornerstones they were, seemed like they would last forever. Time, though, found its way into our life, a meandering of wonderful events, that took us from the present to the future to new presents that showed me that time wasn’t as it once seemed, that it does pass, that it’s not infinite – and that’s the way it should be. Children grow up, fathers age, time passes, change occurs. But, like the mortar of life, we still cling to the memories of what’s passed.

My daughter sets the last log and I press the button, igniting the flames. The fireplace flickers with authenticity and timelessness, another winter is here.

“Resetting these logs might be a new annual tradition, “ I say and she smiles.

Intersection of Purpose and Hope

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By Mark E. Smith

I was recently in Boston, working a consumer trade show for disability-related products, including my company’s power chairs. If you’ve never been to Boston, it’s a stunning city – from the architecture to the cobblestone streets to the harbor – and I found myself in Boston at an amazing spot: the intersection of Purpose and Hope.

No, the intersection of Purpose and Hope isn’t a literal street corner in Boston, but it can be found in any city, and in any of our lives. For me, in Boston, it was found in my meeting a seven-year-old boy with cerebral palsy.

He reminded me a lot of… well… me at that age. He was a little guy, squirming all over the place in a manual wheelchair due to spasms and tone, symptoms of cerebral palsy. And, the reason why his family was at the show was because he needs a power chair to keep up with his siblings and peers – read that, to just be a kid.

We had our top-of-the-line power chair there in a pediatric seat size, and as I soon realized, uncannily as if made to fit him exactly. To address his involuntary body movements, I had our reps unbolt lap belts from other units, and we got him seated, strapped in and stable. And, like he’d been in a power chair his whole life – or, more aptly, a NASCAR driver – off he went!

I looked at his parents’ faces, their eyes, knowing how bittersweet these moments can be. On the one hand, a parent wants his or her child to have all of the independence in the world. Yet, no parent wants his or her child to have a lifelong disability. A child going into an advanced mobility device can be a parent’s emotional tug-of-war.

However, his parents understood the liberation he was gaining, and their expressed emotion was joy as he roared around an empty part of the convention hall.

“He’s going to be a little terror,” his mother said with a huge grin. “…From the playground to chasing his brothers on their dirt bikes.”

For me, I was blessed in that moment in living my purpose as one who’s found so much emotional reward in my career of serving others who are on the path I, too, have traveled. And, the family expressed so much hope toward the quality of life a power chair will bring to their son. All of this is the breathtaking beauty of the intersection of Purpose and Hope.

Where’s that intersection in your life right now? Sometimes we bring our purpose to the corner, and sometimes we come needing hope. I’ve been on both sides of the corner. Regardless, when we simply have the initiative and courage to place ourselves at the intersection of Purpose and Hope, all lives involved are elevated.

First Drafts

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By Mark E. Smith

When my daughter told me that her first reading assignment in her college freshman English class was Ann Lamott’s “Shitty First Drafts,” I was thrilled. Now there’s a professor who knows how to teach!

“Shitty First Drafts” was never a stand-alone essay, but an excerpt from Bird by Bird, Lamott’s 1994 book on writing, aimed at writers living the writing life, and goes back to Hemingway who coined the subject of shitty first drafts. Yet, Lamott, who you might recognize as a very pop-culture and, interestingly, irreverent Christian writer, infused Bird by Bird with life lessons, where I, for one, have always viewed “shitty first drafts” as another one of Lamott’s ultimate metaphors for life.

Lamott’s assertion is that, as writers, the only way we ultimately get to clarity and success is by having the courage to embark on shitty first drafts:

…All good writers write them. This is how they end up with good second drafts and terrific third drafts…. Very few writers really know what they are doing until they’ve done it. Nor do they go about their business feeling dewy and thrilled. They do not type a few stiff warm-up sentences and then find themselves bounding along like huskies across the snow. One writer I know tells me that he sits down every morning and says to himself nicely, “It’s not like you don’t have a choice, because you do – you can either type, or kill yourself.” We all often feel like we are pulling teeth, even those writers whose prose ends up being the most natural and fluid. The right words and sentences just do not come pouring out like ticker tape most of the time.

Chances are, you’re not a writer. But, if your life is like mine, it’s certainly checkered with shitty first drafts. As Lamott puts it, we typically have no idea what we’re doing until we do it. And, I don’t know about you, but I can’t think of hardly any success in my life that didn’t begin as a shitty first draft – from living with my disability to school to career to finances to relationships to working out, and yes, writing. In fact, I have shitty first drafts every day, where based on my disability, two or three tries at any daily living task is the norm. However, I’m always thinking, learning, getting wiser as I do a task, so rather than getting frustrated, I hone in on getting better, improving with each “draft.”

When it comes to our lives, it’s vital to give ourselves permission – and have the courage! – to have shitty first drafts, namely because, as Lamott puts it, they lead to good second drafts and terrific third drafts. Do you know how I learned about finances and relationships, two cornerstones of life? Shitty first drafts! In my 20s, I got into debt up to my ears, by my 30s I paid everything off, and today I haven’t used credit in over a decade, living totally debt free. Relationships have had a similar path, having to learn about love through a lot of painful trial and error, but I think I’m a better partner today than I was 20 years ago. There are so many aspects of life that generally start with shitty first drafts; but, if we’re cognizant, self-aware and dedicated to growth, those shitty first drafts aren’t shitty at all – they’re assured paths to ultimate success.

So, as my 18-year-old daughter moves through her first semester of college, she’s not just reading about shitty first drafts, she’s undoubtedly living them at times, as we all have and do. Yes, it’s hard as a father not to jump in and correct my daughter’s “shitty first drafts,” but I know that by allowing her to learn and grow from them, her second and third drafts – read that, her accomplishments – will be amazing.

Graduations

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By Mark E. Smith

At this writing, my daughter graduates high school this eve. She’s the second to do so in our family’s history. I was the first. Great grandparents, grandparents, my parents, aunts, uncles, no one on any limb of my family tree graduated high school.

However, it’s not like everyone doesn’t try. You start out with all of the hope in the world as a child , but in a realm where we know that cycles of dysfunction are so complex – right down to aspects like addiction having a genetic component – it just gets a grip on you, tough to escape as you hit your teens, your adulthood. I know – I’ve been there.

My daughter’s mother came from a family history of addiction, as well, and not with bitterness or anger or resentment, but with sadness, I watched her fall into the grips of addiction. They say that if you come from a family of dysfunction, you’ll either become it or marry it. Ironically, as 27-year-olds, with our daughter born, my ex-wife and I thought that we’d broken the cycle – we didn’t drink, both went to college, and life was on track.

However, as my daughter hit her toddler years, life went off of the tracks, and my ex feel into a life of mental illness and addiction compelled by her troubled upbringing – while I don’t believe in excuses, I do have empathy for reasons. Again, you can’t fault trying.

As the vortex swirled in our family, I consciously chose to swoop my daughter out. We all were in the generational cycle of dysfunction – my ex-wife became it, I was married to it, and, most disturbing of all, my daughter was growing up in it.

Soon enough, my daughter and I were on our own, my sister a major source of support. And, as my daughter grew, thriving year after year, I was both inspired and scared to death. After all, I was the only person I knew in my family tree to stay on the track during high school, and my worst fear was that my past, her mother’s past would become my daughter’s. Yet, as she grew into a young lady, like watching a thoroughbred round the bend, she never skipped a beat. I can’t count how many of her plays, band concerts, honors clubs, and so many other functions I went to. By 2013, she was named among the top 250 youth scholars in the country, and simultaneously was awarded a scholarship to a summer performing arts program for the top youth musicians in the world – literally. And, all the while, I watched not just with a father’s pride, but awe-inspired by what a person can accomplish with dedication, ambition and passion.

Tonight, my daughter will be among the most honored graduates in her class, her gown decorated with more honors – a stole, multiple awarded cords, so many award pins that my sister had to strategically align them – than I ever knew existed. And, as she walks across the stage, she won’t be the second to change our family tree, after all. No, she will be the first.

See, what I’ve witnessed through my own plight, and now my daughter’s, is that it’s irrelevant where we come from. From a lineage of addiction, poverty, incarceration, illiteracy, and mental illness, none of that crosses the stage with my daughter tonight. My daughter, it proves, will cross that stage as each of us can, where the only legacy her life carries is that of her own – and it’s amazing.

The Science of Hope

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(Beyond general admissions, my daughter is applying to an honors college program that includes research within the student’s field. In the applications process, a 750-word essay is required, explaining the desired area of research, why it’s of importance to the student, and its impact on humanity. It’s a lofty task that, ideally, begins students on an extraordinary academic journey, one that ultimately changes the lives of others. My daughter’s essay is in line with the inspired writing you read here week after week, and so it’s my privilege to share her essay with you this week.)

By Emily C. Smith

As I pursue my undergraduate studies in psychology, there is a much larger life mission at work for me. It’s a passion, a field of study, a research quest that ultimately effects each one of our lives: what’s the origin of hope within the human psyche?

It’s a very personal subject to me, and one that effects the life of every person on the planet. We either have hope or others have hope for us, and if hope is removed from our perspectives and lives, virtually all possibilities cease. Yet, with hope, potential dramatically expands our horizons, where a bleak prognosis becomes potential, where vying is a path for victory. However, the questions remain. What are the origins of hope? Why do some people have hope while others do not? And, how does hope, itself, impact the many circumstances throughout our lives?

I’ve learned about hope in my own life, and wish to extend the power of hope to others. I want to empower others with what I refer to as the “science of hope.”

As a very young child, my mother became addicted to prescription medication. I went through grade school, then junior high watching my mother drift away. I struggled with having hope. I remember being 11, and picking my unconscious mother off of the bedroom floor, tucking her in bed, my heading off to school. I remember sitting in class that morning thinking about all of the times I rushed to hospitals with my father because my mother had overdosed. I thought about all of the times I locked myself in my room as my mom crashed about the house. I remember all of the efforts my father made to put my mother through rehab, threatening to sue doctors who prescribed her more pills. Indeed, I remember sitting in class that morning, knowing my mother’s addiction was killing her – and there was no hope.

My father, though, knew something I didn’t. See, he was born with severe cerebral palsy. He wasn’t expected to live more than a few hours, and once he did, he was declared an absolute vegetable. His life ended up a lesson in never believing in a negative prognosis, but using hope as a guiding light, even in the bleakest of times – maintaining a high-profile career and giving me as much of his time as possible as my mother wasted away.

Soon, the inevitable occurred. My mother moved out, removing herself entirely from our lives. With bare walls because my mother took all of the pictures and very little experience running a house, especially at my young age, I wasn’t just void of hope, I was terrified. We were a 12-year-old and a suddenly-single father with severe cerebral palsy who used a power wheelchair in a bare-bones house – alone.

Yet, my father introduced the one component that would rescue me from my stifling fear and pain: the power of hope.

He hugged me and said, “It’s now just you and me. I don’t know how we’re going to do this, but we are. Soon these walls will be filled with pictures of our life, our dreams rebuilt.”

My father’s unshakable hope was my guide post. I held onto his hope as we learned together how to not just live, but to thrive, that guide post slowly becoming less of a need as it was replaced by my own intrinsic sense of hope.

Despite the tragedy of my family, hope has been the ultimate gift. We all face adversity, but when you have hope, you have the ability to not just survive, but excel. From my home life to my academics to my extracurricular activities, hope has led me to empowering heights. Give me a negative circumstance and I will show you the positives; show me limitations and I will show you possibilities; and show me a grim prognosis and I will show you hope.

I know where I got my hope – that is, from my father, from experiencing adversity and having him lead the way with hope. And, I want to further that legacy by not just portraying hope, but by scientifically defining it for humanity. See, I don’t want hope to merely be a mysterious state of mind that some have and some don’t. Rather, I want to research hope to a tangible level, where it’s a definable tool that doesn’t just elevate our individual lives, but all of humanity.

Kids Be Kids

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By Mark E. Smith

As a classically-trained writer, I understand words – their efficacy or impotence, the way they twirl off of the tongue and echo in the ear. Words are powerful, captivating, emotive. And, sometimes, words are defining, both in the positive and negative.

For some time, as a writer, as a parent and as one with a disability – but, really, just as a person – I’ve been struggling with three words that we use to define what I’ve come to know as an ambiguous, possibly specious term: special needs child.

I, of course, understand our social definition of a special needs child, that of a child with a physical, emotional or intellectual disability. But, is it – special needs child – a logical term to use? I mean, I’m not questioning it from a political-correctness or ethical perspective. I simply question if the label is logical?

And, I don’t think it is. After all, have you ever met a child who didn’t have special needs? Of course not. If we truly acknowledge what each child in our life needs, every child is a special needs child. There are eight children in my close family, and they’re all so unique in character and at different stages from one another that each one has special needs. Why only project “special needs” onto children who have disabilities when every child clearly has special needs?

The label also represents a type of reverse discrimination that’s unfair to all children. If you’re with several children in public, and one has a disability, adults often fawn over the child who has a disability and ignore the other children. Yes, such adults mean well, but they’re doing more harm than good. Such situations inadvertently patronize disability and ignore others – everyone loses.

Instead, let’s see kids as kids. Each is special and unique and has needs, and should be recognized as such. Most importantly, let’s drop the labels altogether, and just let all kids be kids.