Inclusion is more than a feeling

I’ve had an epiphany over something I’ve been struggling to express in words.

Inclusion is more than a feeling.

We may feel welcoming in our hearts, but if our physical spaces and systems are not inclusive, what we feel doesn’t matter.

None of us believe we are prejudiced, racist, ableist, homophobic, or unwelcoming. Society has outliers, of course, but the vast majority of us know these words aren’t positive adjectives.

Do our actions and spaces align with our hearts?

Easy illustration: If you have guests at your house, you don’t pile all your dirty laundry at the front door so they have to walk through or over it. Doing so would not say ‘welcome.’

In our schools, businesses, and places of faith, we must think about what our programs, words, services, and buildings say to those who are atypical or simply different than us.

The Americans with Disabilities Act “requires public accommodations to provide goods and services to people with disabilities on an equal basis with the rest of the general public. ” This is why we have elevators and wheelchair ramps, to name only 2 of the more obvious accommodations.

We need to take this idea into this 21st century.

Disabilities are seen and unseen.


Do the spaces you inhabit welcome all? Go on a scavenger hunt in your mind and try to determine how accessible these spaces are. Let me know what you find! 

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

When I don’t choose to battle

Several years ago Keith and I sat in the church sanctuary with excited anticipation. Why? The preschoolers were singing in church in honor of Mother’s Day.

At the appointed time they all came in the side door with their teachers, the congregation “aww”-ing over their cuteness. We craned our necks, lifted our rears just a little off the pew, looking for Henry.

He never came. Keith squeezed my hand as tears filled my eyes, smiling anyway toward those children who were singing. No one had to tell me where he was. I just knew. He had one glimpse of what was expected and promptly turned around. A kind soul went back to the nursery with him.

It was the first moment I realized my parenthood wouldn’t look like I expected.

Today the third graders received their personalized Bibles from the church, walking one by one to the altar railing and having their name read in front of the congregation. As you might guess, this was not a tradition our family participated in. Henry will have his Bible, yes, but under no circumstances was he willing to stand in front of that many eyes.

When we left church after our morning classes, it was no big deal. I didn’t cry. I didn’t feel upset. Not even a little.

I knew Henry’s soul wasn’t going to suffer if he received his Bible privately instead. In fact, it would suffer more if the parents he trusted pushed him into a painful experience, after he pleaded with us not to participate.

It’s one thing to push a child out of his comfort zone for the sake of growth and even enjoyment.  It’s another to force him to endure stress without a clear and justifiable reason. Learning to brush our teeth? Necessary. Learning to speak respectfully? Necessary. Standing in front of hundreds of people? Not.

Parenting is full of difficult decisions on a daily basis, but this one was easy.


Moms and dads, how do you decide when to pick up the sword? When is a battle worth fighting? I’d love to hear your thoughts.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

What are their strengths? How do they sparkle?

This week I had the opportunity to think of the day Henry went to Perry Harrison for his kindergarten assessment. (I’ve written about this before.) Despite visiting the school several times already, when we walked in the front door, his body instantly went into fight-or-flight mode. It was evident to anyone in a 1-mile radius that he was in serious distress.

That day my heart and Keith’s endured a pain for our hurting child that I don’t wish on anyone, but something else happened too. This is the part I treasure:

By the end of his assessment, he was asking if he could do more. “Can I count by threes now?”

It reminded me of a time when Henry was 3 years old and having an epic meltdown. I sent Keith a text message like this: “I don’t know what to do. He’s throwing trains at me and he can’t calm down. I’ve done everything.”

Keith answered, “Say the ABCs.” Like magic, the meltdown simmered and then stopped.

Henry loves to learn. This has been a blessing in the most remarkable and unexpected ways, which I could list ad nauseam, and I mean this in the least braggadocious way possible. What I mean is that when we allow a individual’s strengths to shine, disabilities don’t hold the same power over us. They still exist and affect the individual’s life – yes, absolutely. However, the power diminishes.

But here’s the catch. it takes patient people to nurture those strengths. Parents, guardians, caregivers, teachers, therapists, friends, doctors… whoever is in the individual’s “village” must be patient, nurturing, and keenly observant. I’m talking eagle-eye observant. We call it the Dream Team, and the Dream Team sees emerging skills, talents, and gifts that may be overlooked by the casual observer or society as a whole.

It’s easier to spot a person’s weaknesses, especially a person’s diagnosed “deficits,” but we must not stop there.

Be a member of someone’s Dream Team. I encourage you to look for the people in your life, even those on the periphery, who may need to have their strengths encouraged. Then, watch how they sparkle and shine.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

We keep on

Working and volunteering in the special needs / disability community is eye-opening in the most beautiful ways.

It’s also revealing in the most horrific ways.

It shows us who our friends are.

It shows us new meanings of abuse.

It shows us how much ignorance and naiveté still exist for folks who don’t know disability personally.

It shows us that knowing Christ doesn’t make someone immune from that ignorance, nor does being a “good person.”

It shows us that being a minority, no matter what kind, means experiencing oppression.

But it also shows us that we must keep pressing in, because if we don’t, who will? Certainly, it will not be the oppressor, the abuser, the ignorant, or the naive.

So, we press in and press on.

We take our breaks when the burden is too much, and another steps in to take our place. We rotate back in, relieve another.

Like night watchmen, we stay alert to trouble. Our eyes search, our ears strain. We do not mark time. We do not merely pace. Our minds, bodies, and souls are active.

We love gently, protect fiercely, advocate religiously.

We keep on.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Favorite Nonfiction of 2018

On Instagram recently, I shared my favorite nonfiction books so far this year. These are not all the titles I’ve read, but they are my favorites in no particular order. All blurbs in quotation marks are found on Amazon, usually written by publishers.

I’m Still Here: Black Dignity in a World Made for Whiteness, Austin Channing Brown

“In a time when nearly all institutions (schools, churches, universities, businesses) claim to value ‘diversity’ in their mission statements, I’m Still Here is a powerful account of how and why our actions so often fall short of our words. Austin writes in breathtaking detail about her journey to self-worth and the pitfalls that kill our attempts at racial justice, in stories that bear witness to the complexity of America’s social fabric–from Black Cleveland neighborhoods to private schools in the middle-class suburbs, from prison walls to the boardrooms at majority-white organizations.

For readers who have engaged with America’s legacy on race through the writing of Ta-Nehisi Coates and Michael Eric Dyson, I’m Still Here is an illuminating look at how white, middle-class, Evangelicalism has participated in an era of rising racial hostility, inviting the reader to confront apathy, recognize God’s ongoing work in the world, and discover how blackness–if we let it–can save us all.”

Shalom Sistas: Living Wholeheartedly in a Brokenhearted World, Osheta Moore

“SH ·l m’ / sis ta: A woman who loves people, follows the Prince of Peace, and never gives up her sass. Shalom, the Hebrew word often translated as ‘peace,’ was a far cry from blogger and podcaster Osheta Moore’s crazy life. Like a lot of women, she loved God’s dream for a world that is whole, vibrant, and flourishing. But honestly: who’s got the time? So one night she whispered a dangerous prayer: God, show me the things that make for peace. In Shalom Sistas, Moore shares what she learned when she challenged herself to study peace in the Bible for forty days. Taking readers through the twelve points of the Shalom Sistas’ Manifesto, Moore experiments with practices of everyday peacemaking and invites readers to do the same. From dropping ‘love bombs’ on a family vacation, to talking to the coach who called her son the n-word, to spreading shalom with a Swiffer, Moore offers bold steps for crossing lines between black and white, suburban and urban, rich and poor. What if a bunch of Jesus-following women catch a vision of a vibrant, whole, flourishing world? What happens when Shalom Sistas unite?”

Fall Down 7 Times Get Up 8, Naoki Higashida

“Naoki Higashida was only thirteen when he wrote The Reason I Jump, a revelatory account of autism from the inside by a nonverbal Japanese child, which became an international success.

Now he shares his thoughts and experiences as a twenty-four-year-old man living each day with severe autism. In short, powerful chapters, Higashida explores school memories, family relationships, the exhilaration of travel, and the difficulties of speech. He also allows readers to experience profound moments we take for granted, like the thought-steps necessary for him to register that it’s raining outside. Acutely aware of how strange his behavior can appear to others, he aims throughout to foster a better understanding of autism and to encourage society to see people with disabilities as people, not as problems.”

Reconstructing the Gospel: Finding Freedom from Slaveholder Religion, Jonathan Wilson-Hartgrove

“Jonathan Wilson-Hartgrove grew up in the Bible Belt in the American South as a faithful church-going Christian. But he gradually came to realize that the gospel his Christianity proclaimed was not good news for everybody. The same Christianity that sang, “Amazing grace, how sweet the sound” also perpetuated racial injustice and white supremacy in the name of Jesus. His Christianity, he discovered, was the religion of the slaveholder.

Just as Reconstruction after the Civil War worked to repair a desperately broken society, our compromised Christianity requires a spiritual reconstruction that undoes the injustices of the past. Wilson-Hartgrove traces his journey from the religion of the slaveholder to the Christianity of Christ. Reconstructing the gospel requires facing the pain of the past and present, from racial blindness to systemic abuses of power. Grappling seriously with troubling history and theology, Wilson-Hartgrove recovers the subversiveness of the gospel that sustained the church through centuries of slavery and oppression, from the civil rights era to the Black Lives Matter movement and beyond.

When the gospel is reconstructed, freedom rings both for individuals and for society as a whole. Discover how Jesus continues to save us from ourselves and each other, to repair the breach and heal our land.”

Warriors Don’t Cry: A Searing Memoir of the Battle to Integrate Little Rock’s Central High, Melba Pattillo Beals

“In 1957, Melba Pattillo turned sixteen. That was also the year she became a warrior on the front lines of a civil rights firestorm. Following the landmark 1954 Supreme Court ruling, Brown v. Board of Education,Melba was one of nine teenagers chosen to integrate Little Rock’s Central High School.

Throughout her harrowing ordeal, Melba was taunted by her schoolmates and their parents, threatened by a lynch mob’s rope, attacked with lighted sticks of dynamite, and injured by acid sprayed in her eyes. But through it all, she acted with dignity and courage, and refused to back down.

This is her remarkable story.”

Everything Happens for a Reason (and other lies I’ve loved), Kate Bowler

“Kate Bowler is a professor at Duke Divinity School with a modest Christian upbringing, but she specializes in the study of the prosperity gospel, a creed that sees fortune as a blessing from God and misfortune as a mark of God’s disapproval. At thirty-five, everything in her life seems to point toward ‘blessing.’ She is thriving in her job, married to her high school sweetheart, and loves life with her newborn son.

Then she is diagnosed with stage IV colon cancer.

The prospect of her own mortality forces Kate to realize that she has been tacitly subscribing to the prosperity gospel, living with the conviction that she can control the shape of her life with ‘a surge of determination.’ Even as this type of Christianity celebrates the American can-do spirit, it implies that if you ‘can’t do’ and succumb to illness or misfortune, you are a failure. Kate is very sick, and no amount of positive thinking will shrink her tumors. What does it mean to die, she wonders, in a society that insists everything happens for a reason? Kate is stripped of this certainty only to discover that without it, life is hard but beautiful in a way it never has been before.

Frank and funny, dark and wise, Kate Bowler pulls the reader deeply into her life in an account she populates affectionately with a colorful, often hilarious retinue of friends, mega-church preachers, relatives, and doctors. Everything Happens for a Reason tells her story, offering up her irreverent, hard-won observations on dying and the ways it has taught her to live.”

The Line Becomes a River: Dispatches from the Border, Francisco Cantú

“For Francisco Cantú, the border is in the blood: his mother, a park ranger and daughter of a Mexican immigrant, raised him in the scrublands of the Southwest. Haunted by the landscape of his youth, Cantú joins the Border Patrol. He and his partners are posted to remote regions crisscrossed by drug routes and smuggling corridors, where they learn to track other humans under blistering sun and through frigid nights. They haul in the dead and deliver to detention those they find alive. Cantú tries not to think where the stories go from there.

Plagued by nightmares, he abandons the Patrol for civilian life. But when an immigrant friend travels to Mexico to visit his dying mother and does not return, Cantú discovers that the border has migrated with him, and now he must know the whole story. Searing and unforgettable, The Line Becomes a River goes behind the headlines, making urgent and personal the violence our border wreaks on both sides of the line.”

Educated: A Memoir, Tara Westover

“Tara Westover was seventeen the first time she set foot in a classroom. Born to survivalists in the mountains of Idaho, she prepared for the end of the world by stockpiling home-canned peaches and sleeping with her “head-for-the-hills” bag. In the summer she stewed herbs for her mother, a midwife and healer, and in the winter she salvaged metal in her father’s junkyard.

Her father distrusted the medical establishment, so Tara never saw a doctor or nurse. Gashes and concussions, even burns from explosions, were all treated at home with herbalism. The family was so isolated from mainstream society that there was no one to ensure the children received an education, and no one to intervene when an older brother became violent.

When another brother got himself into college and came back with news of the world beyond the mountain, Tara decided to try a new kind of life. She taught herself enough mathematics, grammar, and science to take the ACT and was admitted to Brigham Young University. There, she studied psychology, politics, philosophy, and history, learning for the first time about pivotal world events like the Holocaust and the Civil Rights Movement. Her quest for knowledge transformed her, taking her over oceans and across continents, to Harvard and to Cambridge University. Only then would she wonder if she’d traveled too far, if there was still a way home.

Educated is an account of the struggle for self-invention. It is a tale of fierce family loyalty, and of the grief that comes from severing one’s closest ties. With the acute insight that distinguishes all great writers, Westover has crafted a universal coming-of-age story that gets to the heart of what an education is and what it offers: the perspective to see one’s life through new eyes, and the will to change it.”

Hello Mornings, Kat Lee

“Are you ready to wake up for your life and not just to your life?

Don’t worry; you don’t have to be a morning person to start each new day well. Join Kat Lee and thousands of women from countries around the world who have learned to maximize their mornings. In Hello Mornings, Kat introduces a simple yet powerful three-minute morning routine that integrates Bible study, planning, and fitness into a foundational morning habit that fits into every schedule. She then helps you build each of these core habits for life-long growth.

Everyone can find three minutes. And instead of adding one more thing to the list, Hello Mornings lifts the weight off women by revealing a grace-filled way to establish a powerful morning routine that offers

  • a simple way to incorporate the most-sought-after daily habits into a simple morning routine: God. Plan. Move.
  • the latest research on habit formation and development
  • practical tools to help readers develop and grow their own personalized, adaptable plan for mornings
  • stories of transformed mornings from women in every season and stage of life

Hello Mornings helps readers renovate their mornings to establish and grow a powerful daily routine—a long-term, Jesus-centered habit to anchor them in every season. Each morning can then become a launch pad into God’s amazing plan for their lives.”

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Appreciate the passion

As I type, I am listening to Henry play upstairs. He is driving a train in a computer game and narrating a complex storyline, complete with different voices and accents. All of the trains have names from Thomas and Friends, but his story is also punctuated by fun additions like Captain Underpants’ trademark, “Tra-la-la!”

In short, he is totally in his element. He is both happy and at peace.

In all my daydreams or even passing thoughts about motherhood, I never imagined this. How could I? I knew nothing about trains or computer games.

I knew some boys played sports. I knew some boys played in the woods and came home dirty. I knew some liked to hunt and fish. I knew some did all of the above.

I didn’t know 7-year-olds begged for a computer so they could buy a game called Train Simulator. I didn’t know that 8-year-olds could know the difference between a “laggy” computer and a fast computer and would beg for a fast one.

That doesn’t mean Henry’s interests are wrong or abnormal. It just means I didn’t know. 

His story is intertwined with mine, so I’m learning and laughing along with him. If I attempted to force him into my box of expectations, imagine what we all would miss. As I said recently to a group of parents, not only would I stifle the man God created him to be, but selfishly speaking, I’d miss out on so much too.

A Henry without trains would mean no joy on his face, no sparkle in his eye. I can’t even bear to think of what this would do to him. I’ve read what it has done to others, and I can’t let my mind go to those dark places. Not with my son.

It would also mean Keith and I would remain stuck in our own interests and experiences, never expanding our knowledge of the world. (Did you know the New York subway used to have rattan seats?) Sure, I like my hobbies and such, but learning about Henry’s – and encouraging his passion – has had untold positive benefits on my life.

I see other wonderful parents experiencing this same shift of expectation to reality. A sweet friend of mine, a sporty lady, is raising a daughter who loves to dance and just made the competitive dance team. My friend knows nothing about dance but is learning fast.

I also see the opposite: Parents forcing their kids to do activities they don’t enjoy or even hate. It’s not my place to judge, and perhaps they have sound reasons, but I don’t understand this.

Recently, a middle-aged couple shared with me how their son played football until high school. The father was a football coach and rabid fan. When the son decided he didn’t want to play anymore, the father had a difficult time accepting it. “He was so good. It’s not like he wasn’t talented. But he said it wasn’t his thing – he wanted to do music.” He attempted to joke about it, as if this didn’t bother him anymore, but I saw the ghosts of grief on his face. His wife did too, as she said, “It was really hard for you. You know that it was.”

They went on to say that they still love watching and attending football games as a family, but they also love hearing their son’s band play. I think what these parents discovered is that their son enjoyed football, and maybe he was even good at football, but his passion was something else.

I wonder sometimes what would have happened to me if my parents had pushed me to something simply because I was good at it. I had the good fortune of not struggling in school. What if they had insisted I attend a different college or major in math simply because they thought it would land me a more profitable job?

It would have killed my soul. Give me any spiritual gift or personality inventory and you’ll see working with numbers is not how I’m wired.

What if they had forced me to play a sport, no matter how uncoordinated I was, because they enjoyed watching that more than piano recitals?

This, too, would have killed my soul.

Maybe it’s because my parents gave me the gift of choice or maybe it’s not, but I’ve never felt compelled to force activities on Henry. He can shoot hoops or practice putting with his neighbors and know that we don’t expect him to join a team. He is allowed to enjoy recreation with his friends without pressure.

On the other hand, I do expose him to as much of the world’s variety and beauty as I can. We discuss what sports his friends enjoy playing, as well as our local sports teams. (He loves to chant “UNC!” with his friends.) We talk about music lessons and chess teams and painting and running club and Boy Scouts. We appreciate nature and point out the birds we know. We travel across rural landscapes and into cities as much as our circumstances allow. At any moment Henry expresses interests in trying something new, I do all within my means and common sense to make it happen.

Henry is well aware that many opportunities exist, but he also knows what he loves. Observing his love develop, deepen, and mature is one of my greatest joys. The creativity of our God is on beautiful display when we appreciate our differences. We do so with conversation and travel and also by enjoying the product of our collective imaginations. The latter we accomplish through fine arts, literature, technology, and architecture, as well as so many other ways  . . .  even train simulators.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

A new beginning

… when God begins to do a new thing, old things must pass away. […] in order to experience resurrection we, too, must die.

Ruth Haley Barton

In the warm cocoon of my friend’s home, gathered with a few trusted mentors, I found myself saying words I had felt in my soul but not yet dared to speak aloud:
“I feel a stirring within me. I don’t know what God’s doing exactly, but I know I’m not going to be teaching forever.”

It felt indulgent and ridiculous to suggest I might leave my career, my students I love, and my family’s assurance of health insurance. Yet, as the awkward words hung in the air, I knew they were true.

I’ve waited several years for those words to make sense. As Emily P. Freeman says, “Logic and limits often get in the way of longing.” Many legitimate, practical reasons meant I couldn’t quit my job without a clear direction of what to do next.

So, I ran to every opportunity instead, even when it didn’t sit right within my spirit. I applied for jobs I didn’t want. I even interviewed for a job I didn’t want.

Somewhere along the way I let myself die the little death of seeking understanding and control. I allowed myself to want the Giver more than the gift, knowing in time He would reveal His way to me.

This doesn’t mean I didn’t battle frustration or confusion. It does mean I stopped grasping at straws. I stopped praying for clarity and guidance and prayed instead for peace.

***

In the years after Henry’s diagnosis, three things happened inside of me.

First, learning about my son’s beautiful mind and my own mental health informed and shaped my teaching. My thoughts became less concerned with innovative group activities and turned instead to the student suffering from anxiety; the one who told me she was sexually assaulted; the one whose dad was murdered in his convenience store; and the ones who need disability accommodations. More and more, I thought of the students’ emotional needs, not their writing.

Second, I became a passionate advocate for the rights of individuals with autism and also for the parents of children who have special needs and disabilities. Those parents often need care for their own mental and emotional health, despite the fact they often believe they don’t have the time or money to do so. The unfortunate reality is that the entire family suffers and no one receives the level of care they need if the caregivers don’t prioritize their own well-being. 

I’m called, emailed, or otherwise messaged on a regular basis by families who have questions or need a listening ear. I’m honored to be a confidante, but I found myself wanting to help even more and not knowing how. I often wondered, is there such a thing as a special-needs-parent life coach?

Third, I’ve dusted cobwebs off the memories of the question, “Have you thought about being a counselor?” I heard this right up until the point I enrolled in a Masters program for English. The answer was always, “Yes, but it’s not for me.”  In the last few years, however, a new idea began to form: Maybe all this time God knew the answer was really, ‘Yes, but not yet.’

***

The stirring within me, as you might have guessed, now has more shape.

After the years of both running and resting, wondering and waiting, a series of events led Keith and I to the undeniable conclusion: I need to go to school.

The end of ourselves is the beginning of Him, and the wandering and waiting that once made us feel lost can now prepare us for more. Fear, worry, and tension wash away as we’re no longer defined by our circumstances but instead are vertically aligned with the purposes of heaven.

-Logan Wolfram, Curious Faith

After selecting the programs to which I would apply, one day I stumbled across one that seemed too good to be true. My mouth fell open as I quickly carried my laptop to Keith. “If I could create a program for me, this would be it!” We read more together and glanced through the professor biographies until his face registered surprise as well. How could it be we never knew this existed a mere 8 miles from our house? Keith said simply, “You have to try.”

I did. And a few months later, to my great surprise and delight, I was accepted. In August I will start work on my MS in Clinical Rehabilitation and Mental Health Counseling at UNC.

What will I do? The real answer is that I don’t know what God has in store, but I can tell you my dream. I dream of counseling people with autism and other disabilities, as well as their loved ones. These unexpected issues bring both extraordinary beauty and unique challenges to family dynamics and other close relationships.  I want to support the mental health of the entire family. Our family has found this is a gap in the counseling field, and it is one I want to help fill.

I believe the same passion for people that drove my teaching will drive my next career as well. My calling, to glorify God by serving others, hasn’t changed. My assignment has changed. I am still in awe over the way God prepared me for this assignment all along, from childhood until now, and the way He led me to it. I give thanks for His sovereignty, goodness, and mercy and look forward to what is to come.

Good-bye, Tompkins Hall at NCSU. Hello, Bondurant Hall at UNC!

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New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

The gift of common rituals

The text read, “Wanna play in the cul de sac and have a picnic dinner for the kids? I’m just making PB&J for mine.”

“Yes!” we all answered.

One warm, fall Friday evening, several neighbors gathered in the street. We brought  snacks, blankets, water bottles, and toys. Just like that, a new ritual began. Every evening of the warmer months, as families make their way home from work and school and daycare, we make our way outside. The kids snack and race their bikes and trikes; parents take turns running in to throw dinner in the oven or order a pizza. (Pizza Party Friday!)

Sometimes we laugh until our sides hurt. Sometimes we’re mostly quiet and tired. Sometimes the kids hug and giggle. Sometimes they stomp to their respective homes and slam the doors.

It is perfection.

Is it mandated? Is it strict? Of course not. But you can find us out there more often than not. It has become our unspoken ritual, this thing we look forward to all day. For a little while, the demands of adulting fall away and we enjoy one another and simple pleasures.

*****

My friend’s family eats breakfast at the same place every Saturday morning. The staff know their orders.

An acquaintance says her family eats popcorn and rents a movie every Friday night.

My Papa loved to sit on the porch to watch the rain.

My sister’s family enjoys a golf cart ride in the evening.

I make chocolate chip cookies when it snows.

Every night Keith gives Henry a special kiss before leaving his bedroom.

I say, “I love you,” and Henry hollers, “I love you more!”

Our family rituals are a mix of daily, weekly, and seasonal. I bet yours are too. Rituals don’t have to be frequent, though some are, and every good thing that happens doesn’t have to become one. The key is not to force it, but to honor it when it occurs. Our children may count on them without us – or them – even realizing it.

For instance, last year Keith and I decided to cancel our traditional Memorial Day cookout, when Henry voiced his sincere displeasure with that idea! On with the party. We didn’t know how much it had meant to him. Now that we do, we’ll maintain the tradition as long as it is still working, still providing that pleasure for all who attend.

Rituals give our lives a sense of security and a continuous thread of meaning and joy. They affect our emotions and even contribute to our family culture. Susan Stafford Kelly wrote in Our State magazine,

“…small moments add up in young minds, and lead to feelings that last a lifetime.”
What small moments are we both creating intentionally and allowing to happen for our children?
New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Maybe it’s not a luxury.

What is luxury to you?

A $300 purse?
A $25 manicure?
10 minutes alone in the bathroom?

A mom on social media smugly remarked that her daughter had never used an ipad or iphone. Well, good for you, rang in my head. See, an ipad might seem like a ridiculous toddler indulgence to her, and I agree it still can be (for sure), but the absence of an ipad is luxury to me.

I don’t know if I’ll ever forget the looks of shock Keith and I exchanged in our early days with the ipad. Just for fun, Keith bought one app and showed it to Henry. The next thing we knew, Henry was interacting with books and his fingers were flying through Memory games, the very same games he ignored unplugged. As he sped through the levels, we simply gaped. There was no turning back. Matching games, animals sound games, alphabet games, number games, drawing games, train-building games. You name it, he loved it.

And then there was the day I said, “Holy cow, is he… spelling?” Our little guy, who could barely put a sentence together with his mouth, was using the ipad and his fingers to spell.

As we were learning the value of pictures for the autistic brain, we were also struggling with bedtime. Keith created a simple visual schedule on the ipad with four pictures of Henry’s bathtub, toothbrush, books, and bed. That evening Keith showed Henry the pictures and clearly, firmly declared, “Bath. Brush. Books. Bed.” Bam. Henry was going up the stairs without complaint. We stared at each other. Could it really be that easy?

We’ve read and watched the beautiful stories of nonverbal folks who now speak with an ipad, unlocking what has been tucked within, in some cases, for many years. We’ve cried along with the parents who discovered their children’s personalities for the first time. For us the need for the ipad is not quite that dramatic. But here’s what it does for us: We no longer have to be terrified of dining out with friends and family.

We eat out very infrequently, turning down most invitations and choosing to cook at home or have take-out when it’s just the three of us. But, when we must, we don’t carry fear with us. We can pull out the ipad if the wait becomes too long and/or Henry’s sensory needs are exploding.

Many aspects of the device are a luxury. He doesn’t need to watch YouTube videos of the dude in New Zealand doing Thomas reviews. On the other hand, the ipad is an absolute necessity.  Denying access to his ipad after 30 minutes waiting on food in a restaurant would be like taking away another kid’s crayons.

I didn’t plan this. In fact, I planned the opposite. I bought the handmade crayon roll, ready to whip out of the bag at a moment’s notice. I had the purse-sized coloring and activity books. I tucked the tiny Toy Story figures into his diaper bag so he could act out stories. Yes, I was the typical mom.

But I don’t have a typical kid, so I had to stop being a typical mom. My son would rather be ninja-kicked in the jaw than forced to color. And playing with little figures? Um, no.

Autism changed my definition of luxury, just as it changed everything else. And I do mean everything. An expensive piece of technology for a 3-year-old? No. My little guy spontaneously pulling out an activity other than trains or the ipad?

Yes.

Please believe me when I say that technology addiction is a real challenge, but this truth does not negate the other truth: we would never enter a restaurant without it.

We’ve seen stares and heard ugly comments, to be sure. In their shoes, without any knowledge of the situation, I wonder if I would judge too. This is why I’m open about our struggle:

I want to help the judgers. I want to provide just the smallest glimpse into our lives so others can acquire understanding and empathy. How can they know if we don’t tell them? Judging is never acceptable, but I do understand how it happens; we’re all tempted to do it.

So, the next time you see a child with a device in public and start to blame the parents, just pause. Consider the fact that maybe there’s a reason. Maybe this is one of five times a year the family is served a meal in a restaurant. Maybe it’s not. Maybe the kid is a brat. But will your judgement change that?

Allow the pause to change you. Doesn’t empathy feel good?

 

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

On a Sunday morning

Scene 1: Henry whispers to me that we can just learn about Jesus in our own Bible at home. I whisper back that an important part of our faith is being with others who love Jesus. This is all I can say in the middle of the service, but I’ll add more later. I’m discouraged.

Scene 2: I watch Henry put away his puzzle books, move to the edge of his seat, and fix his eyes on our pastor breaking the bread and pouring the grape juice. This is the moment of the service that encapsulates his senses and touches a place inside him that only God can reach.

Scene 3: We’re in the car.

“Henry, what did you learn about today?”

“A boy’s lunch.”

“What did Jesus do with the boy’s lunch?”

“He fed other people.”

“Yes, a lot of people! He only had a few fish and a few loaves of bread, but he fed more than 5000 people. When he broke off the fish, there was always more. It was a miracle.”

“I KNOW, right?!”

*****

I’ve been concerned for Henry’s understanding of God since the diagnosis. No, I’ve been concerned longer than that. It is the single-most important piece of my parenting, that I do my part in showing him the Gospel. In the end, it is his choice to believe. I can’t choose the Way for him. Still, I know his belief largely depends on ours and what we teach him about our Lord and our faith. The responsibility has, at times, felt heavy.

It feels heavy in moments like Scene 1 above.

But then we have moments like Scenes 2 and 3. That day was unusual, seeing them all in the expanse of 2 hours, but those holy moments always come if we wait long enough.

We’ve waited on so much. The breakthroughs always come.

Are you waiting on someone? Some situation? Some answer? Patience, friend.

As you take your next right step today, trust that God won’t let you miss your own future.

~ Emily P. Freeman, here

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 9-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.