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.

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.  

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.

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.

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!

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.”

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.

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.

New year, growing me

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I tend to be in the “a new year is just a date on the calendar and doesn’t represent an actual break with the previous 365 days” camp. I am more a trajectory kind of girl. It won’t surprise you, then, that I don’t write resolutions or set major new goals this time of year.

This is admittedly a good time to reflect, and there is nothing wrong with taking stock and marking the places we want to see change. It never hurts to focus on positive goals. I wonder, though, how often new year’s goals look like measuring ourselves against unrealistic standards, setting us up for inevitable failure. Are we really so dissatisfied with the current version of ourselves that we feel like we need to be a new person as the calendar rolls over?

Tomorrow is a new year, but here’s reality: I’ll be taking into it the same me, with all my accumulated experiences, triumphs and failures, strengths and flaws. And you know, I’m okay with that. I am thankful for the life I’ve been given and the days that have come before and that lie ahead.

I suppose when we talk about a “new me,” we’re really talking about growth. Goodness knows, I make a lot of mistakes, and there have been plenty of moments, big and small, that were painful and even regrettable. My walk with God is a process of constant grace and renewal. He gives me access to His power for transformation. I don’t have to rely on myself to make the future what I want it to be. This is where I find my peace.

We like to think, especially this time of year, that our lives are within our own control. If we set the right goals and make the right choices, if we do better, our lives will look like we want them to. My experiences have taught me that I have much less control over my life than I might wish. Stuff happens. We inevitably screw up, and even when we do the right things, life can still go wrong. If you’ve spent time with people who are truly struggling, if you know of the desperate places in the world, if you yourself have experienced heartbreak and loss, you know that sometimes, there are no good answers. We do not always have the power to fix things. My hope rests in a God who promises healing and hope, not because everything will always work out perfectly, but because He gives us what we need for today and will eventually make things right in a world where suffering is no longer part of the equation.

For today, I am deeply grateful that God promises that my life matters, and that He takes from my shoulders the weight of making that happen on my own. This is how I walk into the new year. My 40th birthday (what?!!) is just a few weeks away. There are changes ahead for our family. The biggest is that mama (that’s me) will be starting a full-time job after eight years away from the professional world. I’m going to be doing some pretty awesome stuff for an amazing organization, and I am stoked. I’d be lying if I said I wasn’t also nervous about the huge adjustment this will be for all of us. But growth happens in change, and I walk forward with confidence because I trust the One who guides my steps.

Happy new year, friends. May you know how much you are loved, how much you matter, and that all your days are safe with Him.

PROGRESS

The Buddy Walk is this Saturday (yay!!), so we’re busy preparing for an awesome day with our Team Lina people. I also have beach vacation pictures to process and share from last week. But all of that can wait for a minute, because I want to talk about a word that’s on my mind this week: PROGRESS.

IMG_2859Lina’s kindergarten start had some bumps. Not surprisingly for her, they were mostly her pet behavior challenges of social aggression and noncompliance. These are the behaviors Lina falls back on when she feel overwhelmed or out of control. It seems to be her way of exerting control over her environment. As her classroom teacher pointed out recently, they are also pretty directly linked to her level of tiredness. These long days are a lot for any kindergartner, and she understandably runs out of juice for focused, structured activities as her energy drains. It’s easy to forget that even routine activities require extra effort for our girl.

Anyway, to make a long story short, I requested a formal process called a functional behavioral assessment (FBA). This is a process outlined in the 1997 reauthorization of the IDEA (Individuals with Disabilities Education Act), the federal law governing special education. This document provides great information for parents about FBAs.

Confession: I have spent more than a little time worrying about Lina’s behavior at school and how it will impact her ability to be successful there. How can she form real friendships if the kids are afraid of being pinched or kicked or having their hair pulled any time she comes near? How can she keep up academically if she won’t participate in school exercises and activities? Will her teachers be able to see past her behavior to understand how bright and capable she is? I realized over these past weeks that even while I believed and preached about our kids’ abilities to learn and succeed in inclusive classrooms, I had to wrestle the voice of doubt that threatened to shake my confidence in my own kid.

Fast forward to this Tuesday, when I met with Lina’s IEP team and the school’s behaviorIMG_3446 consultant to kick off the FBA process. As we talked about where Lina is and the behavior we’re needing to address with the FBA, I began to realize that the team was painting a picture of major progress over the past days and weeks. The social aggression has almost disappeared. Compliance is still a challenge, but Lina suddenly fully participated without hesitation in PE class this week, which has previously been a no-go.  She has begun engaging during the daily social skills group. Her gen ed classroom teacher said she’s formed friendships with her classmates and plays happily with them on the playground. A picture began to emerge of a kid who has found her footing.

As I reflected on her progress, I knew the lesson was one I may be relearning throughout Lina’s life: Have patience and confidence. She can and will succeed.

The challenges haven’t all evaporated. I am hopeful the FBA process will help identify the key drivers for times Lina resists participation and help redirect that resistance so she can get the most from school. Once the FBA is completed, every person who works with Lina – teachers, aides, therapists – will receive student-specific training on the behavior intervention plan. The focus is on prevention and positive reinforcement, helping Lina find better ways to maintain a sense of control and communicate her needs and desires.

But whatever challenges remain, watching Lina fall in love with her new school and new friends and find her footing in the wider world – that’s the point. This is her growing and learning. It takes more time, effort and resources. It may not look like a typical kid’s process. But she will get there, in her own time and in her own way.

I was at GiGi’s Playhouse yesterday morning for the Busy Bodies group I co-lead. It’s a group for the very littlest ones with Down syndrome and their families. A mama with a IMG_3420darling baby girl was talking to us about her little one’s milestones, and I found myself sharing with her something someone told me when Lina was still very little: In the big picture, the fact that it took our kiddos longer to learn and meet their milestones won’t matter. Lina is six, and it’s irrelevant now that she didn’t walk until she was more than two-and-a-half. As an adult, it won’t matter a bit that she didn’t talk until she was at least three and took longer to potty train or do any of the other tasks she will be learning in the years ahead.

As parents of any child, we’re too often comparing our kids. How does my child stack up on smarts, athleticism, fine motor skills, reading ability, social skills? But that’s rarely constructive, and it’s especially hard on parents of kids with a learning difference or disability. That stuff isn’t going to matter all that much in the end.  It’s a lot harder to measure and compare the skills that actually build long-term success. The key is that our kids are growing and learning and making steady PROGRESS. They are becoming, in their own ways and at their own pace. Remembering that requires patience, grace and faith, for ourselves and for our kids.

Today, as we’re nearing Thanksgiving season, I am thankful for progress – my kids’, and mine.