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God With Us

I’ve been thinking a lot about that phrase: Immanuel, God With Us, a name given to Christ long before Mary laid her baby in a feeding trough. God – the infinite, the omniscient and omnipresent, the I Am – made Himself tiny and frail. He became one of us. All of the symbolism of the systems that came before pointed to this: God living as one of us and sacrificing Himself for us.

He wasn’t what we expected. The King of the universe came to a poor family from a notoriously poor town. He came in politically fraught times, to a people oppressed. He wasn’t handsome, powerful, or wealthy. He lived a life of struggle and displacement. He was misunderstood and eventually tortured to death at the behest of the very religious authorities who should have hailed his arrival. His own people didn’t recognize Him.

And yet, those He touched were transformed. The power of heaven flowed through Him, so that even those who touched His clothing in faith were healed. The unrestrained love of God met every person where they were and drew them in. It swept away sin and hurt and suffering and left joy and healing and hope. The willing were never the same.

I recently listened to a group discussion about how Christians should define and overcome sin. It was a variation on discussions I’ve heard all my life. It left me sad and frustrated. Too many Christians seem to believe their job is to access the power of God in order to wrestle sin out of their lives. That’s not consistent with what I find in the Bible.  

Sin is not a violation of a moral code created by a God who demands obedience. The law – by which we know sin – is an expression of God’s character. God is perfect love. In His presence, selfishness that births harm and pain and loss cannot exist. Sin by necessity separates us from Him. Sin is death because it cuts us off from the Source of life. No matter how good we are, we can NEVER meet the standard of perfection required to live in communion with God. For this reason, Jesus stood in our place. His perfection and sacrifice – the full measure of selfless love – cover us. We are restored. We live again in relationship with God, and His life and love flow through us. We’re the branch, connected to the Vine. We produce sweet fruit of love in action, not through work and wrestling, but as a natural product of His life in us.

Photo credit: Jean Beaufort

The story of the Gospel starts in Genesis 1 (“In the beginning, God created the heavens and the earth”) and ends in Revelation 22 (“The grace of the Lord Jesus be with all”). It is the story of a God of love who is the source of life and longs to be with us. His love expresses itself through creation and relationship. He knew we would stray, but He always had a plan to win us back. The central question of His character – a question introduced out of selfish ambition – would be answered.

We forget this truth. We get bogged down in detail. We slug it out over theological interpretations. We allow our need for control to drive us to extremism. We worry about how we measure up. We judge others for how they measure up. But none of that is where God wants our attention. He wants our attention on Him: knowing Him better, going deeper with Him. The Bible is not a rulebook to live by; it’s a revelation of God. The Gospel thread from Genesis to Revelation is a picture of how incomprehensibly good He is. It’s about a God who is WITH US – walking with us, leading us, transforming us, giving us life.

The message of Christmas is the same as the message of Easter and of every day in between: A God of infinite love gave Himself so that we can live in Him. Our only job is to choose Him. The rest is His beautiful work in us.

My hope this season is that we’ll each see Him in new and clearer ways – and by beholding, we will be changed. Merry Christmas, friends.

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P.S. If you’re looking for this God of love, the Bible is the first and last authority. I never stop finding more of Him there. But sometimes, extra content helps me understand and connect to stories that can feel removed from modern language and context. I highly recommend The Chosen – free to stream on any device. It’s the first time I’ve watched a video production and felt a lightning bolt of recognition: There He is. That’s the God I love. The impact has been far-reaching for me. (One caveat: The first episode gets pretty dark. It’s a beautiful story of redemption, but if portrayal of devil possession isn’t your thing, start with the second episode.)

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Enough

There is a lot on my heart and mind these days. I suspect the same is true for most of you. 

These are not easy times. The noise level is nearly unbearable. 

There are so many voices raised in anger, frustration, fear, condescension, judgement. How do we know which ones to listen to? How can we even begin to juggle all the things we’re being told to care about? How can we keep ourselves and our families safe when it feels like every day brings a new threat? 

We’re afraid. We’re overwhelmed. We’re sad and isolated. 

That’s true no matter our politics, our religious views, our racial or ethnic identity, our disability status, our geographic location, our socioeconomic status. We’re all feeling it. We are divided, without recognizing that so many of our arguments are different responses to the same fears.

Two white children with sleepy eyes look over the railing of a top bunk bed, smiling with genuine delight. The young girl on the left has chin-length blonde hair and bangs and is wearing a pink PJ shirt. She has Down syndrome. The slightly older boy on the right has medium-short, red-brown hair and bare shoulders. A stuffed tiger is on the bed next to him.
They are my heart. How do I keep them safe?

It feels like the world is unraveling around us. And maybe it is. Those of us who are Christians believe that will be the inevitable end of earth’s history – the collapse of a world that has veered off course, separated from its Creator and Source of life. 

I don’t have all the answers. I, too, am tired. I am sad. I am angry. I seek gratitude and joy in my many blessings, but it’s impossible to fully shut out the noise. I struggle to understand my responsibility in the face of others’ pain. I feel the weight of a day-to-day lift that can get so heavy. 

But there are some things I believe deep in my core, because I have experienced them. They are the things I hold to. They are the things that carry me through. 

I walk with God, and I know Him to be good and present in all the moments of my life. I believe Him to be infinitely capable and working for my ultimate good, and for the good of those I love. I know that I cannot control much of anything that happens in this world, but I can control how I respond to the people around me. I believe God knows every person’s story, loves every person completely, and calls me to love each one as He does. I believe that the unraveling around us is a reminder that we were made for something more. And I believe that God has gone to the absolute end to save every precious life on this planet who will have Him. 

Maybe that sounds like a fantasy, too good to be true, belied by the chaos around us and centuries of harm done in God’s name. I get that. All I can say is, this is all I have found in the world to be worth trusting, worth hoping for, worth living for. I have tried Him and found Him faithful. 

I am humbled by the mess we’re in. I have questions and doubts. I can’t see the future. But I know the One who can. Day by day, it is enough.

He is enough. 

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The Magic of Tonight

She smells like macaroni and cheese. 

We lay in her double bed, forehead to forehead. It’s past her bedtime. She giggles and thinks of new ways to delay the inevitable. 

“I need Bunny.” 

“I need Tilda.”

The lights are off. The air filter in the corner offers its nightly white noise. The faux moon dangles from an electrical cord in the corner, glowing softly – daddy’s addition to the decor. I sing her lullabies. Her eyes droop, and her restlessness stills. 

She and her brother spent the evening chasing June fireflies. They’re 8 and 11. They wandered the yard with Ball jars. She wanted help. Brother didn’t need any. She chased the blinking lights, occasionally coaxing a winged creature into her container. 

“Daddy, I need help!” He went, traipsing through the wet grass in flip-flops, jar at the ready.

Brother caught a handful, but he let them go free. He described watching one nurse a bruised leg before flying to freedom. 

I stayed on the deck as they headed in to prepare for bed. The dog lay nearby. I leaned my head back on a couch cushion. White outdoor lights framed my view of the rapidly darkening sky. Bats flitted across the open expanse. Fireflies blinked in my periphery, gradually making their ascent. Before I go in, they’ve reached the tops of the trees, flashing like distant fairies as night closes in. 

The world is a complicated place. Most days, the weight of responsibility and worry weigh heavy. But tonight, a perfect summer night in the South, there is nothing I need, besides the sweet, macaroni-scented breath of my children and the fireflies, rising skyward while the night falls. 

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Calling out white Christian nationalism

I, like most of you, have been deeply shaken this week. I have spent the past couple days processing what my role is right now – first as a Christian, second as an American.

For today, I believe it’s necessary to speak out against the growing influence of white Christian nationalism. We saw the devastating consequences of that influence on Wednesday. I can’t get out of my mind the images of a mob carrying crosses and Christian banners alongside Confederate and Trump flags, as others in the crowd erected a gallows and stormed the Capitol.  

Many Christians are being led down an increasingly radical path by blind political loyalties. White Christian nationalism is influencing so many who have no idea what they’re dabbling in. It is dangerous, and it is antithetical to the gospel of Jesus Christ. I can’t say it any clearer than that.

Christian friends, I beg you: Recognize what is happening. Do not allow yourself to be led any further down this path. This isn’t about liberals versus conservatives. So much of what we’re now hearing on the right is in direct contrast to traditionally conservative political values. We are called to be wise as serpents and gentle as doves. What I have seen growing amongst friends and neighbors – people I truly care about – is neither.  

Misinformation has been weaponized. For many, the basic understanding of reality itself is threatened. This is how radicalization works. It convinces you not to trust objective sources and leads you to rely on partisan information to the exclusion of all else. Social media algorithms steer you toward increasingly more extreme ideas, and in turn influence others in your circles. More and more people are unmoored from a factual foundation. Confidence in institutions and expertise is at an all-time low, so we distrust official information. We “do our own research,” which often means we believe whatever validates our preferences. Unprincipled leaders are free to take full advantage, and spineless ones go along. In response, social media platforms and other organizations scramble to address rampant misinformation in ways that raise serious questions about free speech.

I don’t believe it’s an exaggeration to say that (not for the first time) our republic is teetering on a precipice. We are each responsible for our role in what happens now.

But even more importantly, Christians are responsible for what happens to our witness. We are not each other’s enemies. We are fellow followers of God. A faithful walk with Him will result in unity through a higher calling. Who are we really following: Christ, or others using His name?

I’ll keep wrestling on my knees with what my role is in these very strange days. Perhaps this is the time we’ve been waiting for. May we each be found faithful.

P.S. If your first instinct is to comment “but Black Lives Matter” or “but election fraud,” please don’t. I value respectful dialog, but constructive conversation does not appear to be possible around that kind of false equivalency or misinformation. If you’re not willing to reevaluate your positions and loyalties in light of this week’s events, we’re probably not going to get anywhere here.

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About Yesterday

There is a lot that could be said right now. There is a lot being said. I am hesitant to jump into the fray, because our first reactions are rarely our best. I process through writing, so it’s with humility that I share what’s on my mind right now.

My heart aches for my country. I think most of us feel that way. Political divisions have deepened into a chasm. Political extremism, now propagated from the highest office in the land, has pushed us to the brink.

How do we move forward? Sure, we have a change in national leadership coming in two weeks, but we all know that doesn’t magically fix what’s clearly broken. Is there even common ground to be found any more?

I believe there is. I see a common thread that weaves its way through so much anger and fear.

We are all feeling, deep in our guts, that our government institutions are no longer serving the interests of the people.

That’s it. That’s the common thread.

We know it’s true. We sense with mounting and sometimes explosive frustration the ways in which our systems are failing us. We see those failures costing lives and livelihoods. Some of us have experienced this through generations of oppression. Others of us have felt it more in recent years. But instead of recognizing this common experience and working together to build better, fairer institutions that will more directly serve all our interests, we have allowed ourselves to be misinformed and manipulated. We have turned our anger on our fellow citizens. We have put our faith – and I use that word intentionally, as much of what has developed is cultish idolatry – in political figures. We have forgotten that it is we the people who bear the responsibility and the power to steer this enormous, complicated, unwieldy ship.

Taking back that responsibility doesn’t look like a deadly hissy fit that attempts to derail democracy when your guy loses. It looks like rolling up our sleeves and doing the hard work of learning and understanding. (Why does it feel like citizen voices are not heard by those in power? What’s actually driving policy right now? What would it take to make real change?) We must make a deliberate decision to reject divisive messaging that turns us against each other. We must choose to hear stories that make us uncomfortable, to listen to experiences that don’t mirror our own.

I’m going to repeat something I’ve said often: sources of information matter. SOURCES OF INFORMATION MATTER.

We saw yesterday the terrifying consequences of misinformation. Pulling our republic back from the brink will take a conscious decision to trust sources of information with a professional obligation to objectivity and nonpartisan understanding.  The alternative is to allow the self-interest of those in power to manipulate not just our opinions but our understanding of reality itself.

Democracy has always rested on access to factual information. The American Revolution developed when a people had the ability to collectively follow events as they unfolded and openly discuss and debate ideas. It was this free flow of information that enabled self-governance. Our founders understood this when they enshrined both free speech and a free press in the first amendment to our Constitution.

I have heard friends suggest that dictators start by disarming citizens. Disarming may happen, but another step always comes first. Every tyrant who has ever successfully suppressed a people has used the control of information as a first and primary weapon. That often looks like shutting down or discrediting objective sources of information, convincing the public they can only trust sources that validate a certain perspective. It also looks like flooding information channels to sow confusion. (“In all this noise, who knows what’s true? I’ll just trust people I like to tell me what to believe.”) Unprincipled leaders weaponize information to whip up rage and resentment and direct it at political rivals and other groups of citizens.

Misinformation otherizes. It dehumanizes. It divides. It weakens. It manipulates. It benefits only those with the power to control it.

We must choose better. Knowing the truth and understanding the underlying challenges that threaten our nation takes real work. It takes discomfort. It takes a willingness to set aside our anger, however justified, and to admit our mistakes and learn. It takes empathy and patience. It takes a determination to participate in the democratic process. It takes a will to act with thoughtful purpose, not just for ourselves but for all those around us. It’s slow and unglamorous work.

I don’t know whether our collective society has the capacity for that work. I think that remains to be seen in the coming weeks and months. Will we see yesterday for the dire warning it is and correct course, or will we continue down the path that led us here? The answer lies with each of us, and the choices we make today and every day after.  

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Stuff you’ve wanted to ask about autism

As you likely know if you’ve been following our family, my son was recently diagnosed with autism and anxiety, in addition to an earlier ADHD diagnosis. After a lifetime of disability advocacy and professional work, our family is experiencing new aspects of disability first-hand.

As we have shared our son’s diagnoses, some common responses and questions have come up. I thought sharing on this blog some of what we are learning might be helpful for those who are in a similar process or who want to come along on ours. I’ll start with a couple of common questions and may post new ones over time.

If you have more questions, or simply want to connect, please feel free to email me directly: jolene.sharp@gmail.com.

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Autism Q&As

Q: Aren’t doctors handing out labels to everyone these days? Seems like any kid who is at all different, or who is struggling with stuff all kids go through, gets a diagnosis. Doesn’t that just tell kids something is wrong with them?

A: This is a common reaction. I have sometimes felt this way myself. There are a few reasons I’ve come to view this issue differently.

  1. A diagnosis doesn’t mean something is broken or wrong. It’s simply a way to better understand a particular person. My son’s diagnoses help us understand what’s hard for him, and why. They make it easier to know what’s going to be most helpful, and how to best support him. I know this, because we struggled for years without a diagnosis and tried a lot of stuff that didn’t work for him. Now that we better understand what is going on, it’s MUCH easier to know what kind of help he needs, and to support his many gifts. We can now access resources and community. For many families, a diagnosis opens doors to much-needed services, like speech or occupational therapy. I understand that for a lot of people, a diagnosis carries stigma. But that’s a problem with hurtful thinking – not with the diagnosis itself. Rejecting information about how my son’s brain works would do active harm to him and to our ability to be the parents he needs. Instead, we choose to embrace all of who he is. We choose to work to increase understanding and eliminate hurtful stigma that sees disability as brokenness.

  2. It’s easy to understand why people would get the mistaken idea that neurodevelopmental disabilities like ADHD or autism are being over-diagnosed. We certainly see many more kids being diagnosed than we used to. You’ve likely seen headlines about “increasing prevalence.” However, it’s important to remember that we’ve learned a LOT more about these disabilities over the past 20-plus years. That has helped us get better at identifying them. More children have access to screenings at younger ages – which results in more kids being diagnosed and getting help sooner. Even so, research tells us there are still many kids and adults with neurodevelopmental disabilities who have gone undiagnosed. This is particularly true for people of color and for girls and women with autism. (There is a lot of work happening to close those gaps. See recent CDC information on racial gaps in autism diagnosis.) The key thing to know is that specialists today have a much better understanding of what is happening in neurodivergent brains, and they have very specific criteria for diagnosis. Instead of being dismissive, it’s worth taking the time to understand what these developmental disabilities really are.

    Resources our family has found helpful:
    Driven to Distraction, by Edward M. Hallowell, M.D. and John J. Ratey, M.D. – a great guidebook to ADD/ADHD
    Welcome to the Autistic Community – a plain language guide from the Autistic Self Advocacy Network

  3. When parents feel there is something going on with their kid – there is likely something going on with their kid. Parents who seek help do so because they see a child who is really struggling. If you’re not a live-in witness, be very careful of judging “that’s stuff all kids do.” Sometimes, a developmental difference is first apparent to those outside the home. But my experience tells me that many neurodivergent kids work very hard to maintain as best they can what is expected of them in public, and then vent the resulting stress, anxiety, and exhaustion in the safety of their own homes. I can tell you: It is very hurtful when people minimize something they don’t understand, or worse yet, blame your parenting. The daily reality in our house has changed dramatically for the better over the past year. Understanding and the right support made all the difference.

Q: Does your child have high-functioning autism?

A: There is no simple answer to this question. Hang with me.

Functional labels have been common in the autism world for a long time. This is in part because of misunderstanding about the name: autism spectrum disorder, or ASD. Most people envision the spectrum as linear, with a person’s diagnosis plotted somewhere in a range from very low-functioning to very high-functioning, or less autistic to more autistic.

Rather than try to explain the spectrum myself, I am going to link to the resource that first reshaped my understanding. Please take time for this; it’s key to understanding autism.

“Autism Is A Spectrum” Doesn’t Mean What You Think – a blog post by C.L. Lynch

And another great visual: Understanding The Spectrum – A Comic Strip Explanation, by Rebecca Burgess

Many of the ways my son’s autism manifests are less obvious. He has a high IQ and strong language skills. He can skate by academically with minimal effort. This means the areas that are hard for him – some executive function, fine motor, social awareness, and emotional processing skills – could easily be missed or misunderstood as rudeness, distraction, laziness, immaturity, lack of discipline…  It means that for 10 years, no one put it all together. It means that his diagnosis is sometimes met with surprise or skepticism, because he doesn’t look like we think autism looks.

Many autistic self-advocates prefer to describe autism in terms of the level of support a person needs. Some people with autism need a lot of support for daily living. My son is likely to need less. What we have learned he needs most is a huge, heaping helping of radical acceptance to build his confidence to be truly, wholly, beautifully himself. We invite you to join us in offering that kind of acceptance to him – and to every child in your life.

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Understanding Corin

This is not a pandemic post. But in order to get to the main point, I have to start with the pandemic.

See, one of the gifts of this time is that I have gotten to know my kids. I mean, I knew them before. But after nine months of intensive time together, I REALLY know my kids.

Admittedly, that has sometimes involved desperate parents with glazed eyes wondering aloud how long it will be before babysitting and a night out are back on the table. But all in all, it’s been a gift.

I’ve learned things about my kids I didn’t know. I’ve learned things I maybe should have known but missed in the busyness of pre-pandemic life.

A lot of that has been delightfully beautiful, like perfectly executed ballerina twirls and skillfully shaded pencil sketches. Some of it has been hard, like learning how to support kids through anxious and unsettled times, or how to talk about racial injustice.  

I also learned that my son has autism. 

From this vantage point, it’s pretty obvious. But it wasn’t obvious to me more than a year ago, when our pediatrician mentioned it as a possibility. I remember responding, “This doesn’t look like autism to me.” I had more to learn.

It took us a year on a waiting list to get in with a developmental medicine specialist. That appointment came just a couple weeks ago, but by then – after those months of quarantine with my kids – I was pretty sure what the outcome would be. As suspected, we left the office long after dark with an expanded set of diagnoses: ADHD, anxiety, autism spectrum disorder.

Let me be clear: this isn’t bad news. Jon and I aren’t grieving. This is an important step in a learning process. It’s one more way we understand what makes our son tick and how we can best support him. As I told Corin that night, “You’re the same kid you were last night and the night before that and every night before that. This just helps us understand you better.”

And that’s the crux. The label is only helpful in the ways it helps us know our son, celebrate his many strengths, and help him with the stuff that’s hard.

A diagnosis isn’t an end point. It doesn’t tell us who Corin is. It does unlock more information and help pieces fit together that we all – Corin included – struggled to understand for so long. It tells Corin that he’s not broken. His brain is just wired differently. It helps explain why some things are much easier for him – for example, deep focus and learning in subjects he’s interested in, fantastic creativity, and a remarkable memory for details – and some things are harder – like some executive and social functions. 

A diagnosis can help us feel less alone. While every autistic person is unique (let me say that again: every autistic person is unique), there is a worldwide community of millions who share some common traits and experiences that set them apart from neurotypical people. Corin is reading an introductory book written by autistic self-advocates. He is seeing himself in those pages. Things that felt like a mystery click into place. 

Corin is still processing what all this means. I have watched him struggle with a realization that many things that make him who he is also make him different from his peers.

But we are here to beat a relentless drum of acceptance. We tell Corin: “You are beautifully and wonderfully made. The Creator who knit you together knows you more intimately than you know yourself and loves every molecule of you completely. He has great plans for you. Your family knows you and loves you exactly as you are. You get to define what you want your life to be, and we will be right here, supporting you every step of the way. When things are hard, we’ll figure it out together. There is nothing wrong with you. You are Corin – and that will always be amazing.”

I have a lot more to learn. We all do. We’ll be learning more about who Corin is for the rest of our lives. The same goes for Lina. But I have discovered such freedom in knowing that I don’t have to hold my kids to some fixed, external measure of success. In fact, I don’t define their success at all. (Confession: When I try, it often turns out I set the bar too low.) My kids will forge their own paths. I’m here to encourage and support. And you’d better believe, I’ll be here fighting like hell to make sure the world recognizes my kids for who they are and all they have to offer.

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As we have shared the news of Corin’s autism diagnosis, some common reactions and questions have surfaced. I plan to share another post in the next few weeks in Q&A form, to help talk about this path we’re on. Our family has always been very open about our experiences, and we think it’s important to continue that now. (Corin has approved this post!) So: If you have questions about autism – maybe ones you’ve been afraid to ask – or about Corin and his diagnosis, send them to jolene.sharp@gmail.com. I will do my best to use this space to share resources and what our experience has taught us. I am no expert, but I invite you into our learning process. I hope to hear from you!

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Want to raise kind kids? Make their world more diverse.

The Christmas season is here. As we sing songs about peace on earth, goodwill toward men, I’d like to chat about what has become a vaguely loaded subject.

Parents, pull up a chair.  Let’s talk diversity.

Your kids’ early experiences shape their view of what is normal. If their relationships center on people who look like them, talk like them, and have backgrounds similar to theirs, it will be much harder for them to relate as adults to the exceptionally diverse world that awaits.

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Our friends Kate and Hayden

It’s not news that our culture is more divided than it’s been in a very long time. We’re losing the ability to empathize with people who are different from ourselves. As our social interactions move online, our differences are magnified. The only cure – I’ll say it again – THE ONLY CURE is to build real connections with people who are different from ourselves.

Take a hard look at your social circles. What do your children see? Who are their friends? There’s a good chance your child’s world is much less diverse than the wider world around them.

I’m not judging. It’s natural for us to be drawn to people with shared experiences. We need those people. It’s not easy to expand beyond that comfort zone. Even if you want to, it can be hard to know where to start.

To get you going, here are a few tips for building more diversity into your kids’ daily lives:

1. Step outside your neighborhood. Widening your geographic circle can immediately broaden your kids’ experiences. Consider playgrounds, Mother’s Day Out programs, churches, libraries and social events in more diverse areas. Visit an accessible playground near you. Reach out to the people you meet there and look for opportunities to build new friendships.

2. Think beyond race. Diversity is not just about skin color. As the parent of a child with a disability, it’s important to me that your children experience disability as a natural part of life. Whatever your own beliefs and identity, your children need to be able to interact as equals with people of different genders, ethnic backgrounds, religions, economic levels, sexual orientations, political beliefs… Think as broadly as possible about the perspectives that are missing from your kids’ world.

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Lina, Baby Margaret and me

3. Take a close look at your kids’ play. Do all their dolls or action figures look like them? What type of world are they experiencing as they play? Kids need to see themselves in their toys, but they also need differences to be normalized through play. This blog links to some fantastically diverse toy options.

4. Use books to broaden your child’s world. Research tells us that literary fiction builds empathy. The stories we read take us to new places and allow us to connect with a limitless range of characters. The books your children read from the earliest ages can shape their views. As your children grow, encourage them to explore stories outside their normal areas of interest or experience. Fill your home with books that allow your children to see the world through all kinds of eyes.

5. Talk about it. I hear white friends say things like, “Why are people making race such a big deal? I was raised to be color blind.” But let’s face it: you’re not color blind (or disability blind, etc.). Neither are your children. Those of us who are not part of a given minority group often miss the ways our language, systems, and cultural norms dehumanize and “otherize.” (This article is an excellent exploration of research on children and racial perceptions.) Talk to your kids about inequality. Call out discrimination when you see it. You don’t have to know all the answers. It’s not about creating guilt. Just acknowledging the bias and barriers others experience – and the ways we can help – can go a long way to raising children who will make the world a better place.

We live in unsettling times. Divisions are deep, and civility is waning. It doesn’t have to be this way. The Christmas song has it right: “Let there be peace on earth, and let it begin with me.”

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For the love of weird brains

My son was recently diagnosed with ADHD.

There is a lot to unpack in that sentence. I’ve tried a half-dozen times to write about this. I’ve struggled to explain how we got here, but I think the best place to start is with Corin.

3C34DC0E-1252-4DBF-A401-3CB9BC4C1169Corin is a wildly smart and imaginative kid who thrives on love and affection and wows me with insights well beyond his years. He loves being the center of attention. He excels at reading and language arts, and many academic tasks come easily. He is obsessive in his interests (currently Pokémon, heaven help me) and lives deep in his imaginary worlds. He is sensitive and a keen observer of people, and he internalizes more than he lets on.

Corin also struggles mightily with emotional regulation and executive function. Because he is so bright, he is able to maintain well enough in school to avoid being flagged as struggling. His teachers know he isn’t performing to his full potential, but he’s a good kid who expends everything he has to meet expectations. That means he has nothing left by the time the school day ends. In the safety of our home, he releases pent-up negative energy in outbursts that leave the rest of us shell-shocked and exhausted. The cracked light switch and holes in his wall testify to the escalating rage that led us to get serious about finding answers.

We’ve sought parenting advice and tried every technique in the book. We’ve worked on his diet and sleep habits, limited his screen time, encouraged more physical activity and outlets like music lessons to build confidence. We’ve diffused essential oils and showered him with love and attention. He’s in regular therapy.

The bottom line is that a kid with an untreated ADHD brain does not have the control to use the strategies he’s learning when they’re needed most. We’re still in the process of figuring all this out, but treatment is necessary to calm Corin’s brain to a place where he can learn things like emotional regulation, impulse control, and follow-through on hard tasks. He needs help regulating his body’s hyperactive response to uncomfortable environments. While home is the place we’ve most felt the impact, his functioning in school and church have also been affected.

60C5B004-DA29-41C0-8069-EADDA84ABD45Part of my struggle in how to share this story is that I want to be clear I’m not seeking validation. We know we’re doing what’s best for Corin. I am sharing this chapter of our story because I know there are other families in our shoes, and because our family has learned the value of being open and real about our experiences.

We are not ashamed of Corin’s diagnosis. His brain works differently than most kids’. We’ve talked a lot with him about how amazing “weird” brains are, and how ADHD will give him a different perspective on the world. We’ve seen his relief at knowing there is a reason he struggles. After years of attending Buddy Walks and seeing the attention Lina gets, he’s feeling pretty good about his own brand of special. He knows we’re going to do whatever it takes to get him the help he needs. We talked about this blog, and he wanted me to share his story.

I’m also not going to lie about how hard all of this has been, and likely will be for a while yet. Being mom to my two children has demanded more of me than I could possibly have imagined. I have had to dig very deep, and grow beyond what felt possible.

I am tired. But I am also grateful and hopeful.

1A048D53-57FE-4C48-99F5-8B3405DE6727I am grateful for the incredible partnership of my husband. I am grateful for our support system of family and friends. I am grateful for compassionate and informed medical professionals and therapists. And always, I am grateful for my children. They are my heart, and remarkable people in their own rights. I am lucky they are mine.

I am hopeful because I know we will navigate this just as we have every other challenge that has come our way: with hard work, honesty, courage, and the confidence that God will give us exactly what we need for today.

Well, that, and plenty of coffee.

by

What kind of year has it been?

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A year of kindergarten special education in one photo

I’m in a reflective mood this evening. Tomorrow is my youngest’s last day of kindergarten, and my oldest’s of third grade. I’ll spare you the cliches about time passing, but know I’m thinking them.

I’m not really sure how to feel at the end of this year. I don’t know what lens to choose.

It’s been a hard one in many ways. Lina has struggled with waxing and waning behavior issues over the course of the year. (Hello, old friends “non-compliance” and “social aggression.”) We’ve had to work exceptionally hard – much harder than I expected, after our comparatively breezy preschool experience – to get the communication we needed from Lina’s special ed team. Math has been challenging for her. I’ve spent a lot of time worrying about things I have little control over.

Corin has had his struggles, too. He is a bright student who has spent this year learning about the increased accountability of letter grades and real homework assignments. We’ve worked hard to keep the responsibility of those things with him, rather than taking them on ourselves. That’s meant making peace with B grades for a kid who’s capable of straight As. He’s also still the kid who collapses when he gets home after the strain of meeting expectations all day long at school. He’s the kid who can’t function without 10-11 solid hours of sleep, and the kid who has trouble acknowledging difficult emotions and expresses them with outrageous emotional outbursts.

But… But, but, but. It’s also been a GOOD year. Lina was reading on a first-grade level by mid-way through kindergarten. She has made so many sweet friends in her class, and their families have gone to extra lengths to include her. The room mom this year was extraordinary, hosting more than one social event for all 20+ kids in her own back yard. Lina’s classroom teacher was a living example of the kindergarten teacher every kid deserves: so kind and encouraging, but gently prodding her students to grow and do their very best. Her love for those kids was evident in every interaction. Toward the end of the year, Lina triumphantly read the school’s mission statement (including the phrases  “balanced education” and “lifelong learners”) over the P.A. to the entire school during morning announcements. The staff in the room applauded when she was done.

Corin is currently reading Lord of the Rings (which, I here admit, I didn’t manage to finish until college). He has gradually pulled his grades up, entirely of his own accord. He has made new friends, explored new interests, and shown flashes of surprising maturity. His teacher had a tough class this year, with some challenging behaviors, but she handled it with tremendous skill and grace, never lowering her bar for the kindness and respect she required. She cared about her kids and was deeply committed to their learning, both in academics and in the skills they’ll need to become responsible adults. Corin has continued to develop his vivid imagination and his love of writing, and it’s clear he takes after his mama in his love of story and communication. He has built a wide circle of friends, and has bonded further with a couple very close ones.

So how do I summarize all that has come with this school year? I suppose, like so much of real life, it defies easy categorization. It was messy and hard and glorious and necessary. It was beautiful, in that the two children I love the very most successfully navigated another year of learning and growth.

I worked from home today, which meant I didn’t have to run out the door before the kids were awake. I lay beside Lina in her bed at 6 a.m. and read her stories. Corin came and snuggled in. I was tired and needing another hour of sleep. They clambered over and around me to poke and tease each other. It was silly, and chaotic, and exhausting, and beautiful.

Happy summer, friends.