So You're Telling Me I Have to Wear Pants: Navigating Season Changes and Sensory Issues

Fall is here.

If you live in the midwest, or anywhere where there’s a shift in temperature, your week may have looked something like mine.  Everything was all fine and good until the kids needed pants. I’m not sure how I can be so unprepared for this moment every year, but a quick poll of parents revealed I’m not alone.  

For kids with sensory issues, shifts in wardrobe can be catastrophically difficult-- and not just because we aren’t prepared with pants that fit. Many kids-- some on the autism spectrum, some not-- struggle with certain fabrics or elements of clothing.  What might seem like a preference or stubbornness is often a true, deep feeling of discomfort-- one we may not understand ourselves.  The best, most succinct book I’ve ever read about sensory processing disorder (Your Essential Guide to Understanding Sensory Processing Disorder by Angie Voss- affiliate link) puts it this way: “Sensory stimuli, such as the feeling of clothing on our skin (tactile), are typically tuned out by the neuro-typical brain. A brain that over-registers tactile input may “feel” the clothes ALL day long, unable to adjust or habituate to the texture on this skin.” Sometimes, clothing preference is more than preference: period.

So what do we do the get through this transition? Here are a few tips that might help.

Create a social story with photos of your child.  

While writing a social story can feel overwhelming, in my experience it’s one of the best tools out there.  Marshall’s teachers have used social stories for anything from talking to friends to dealing with fire drills.  At home, we’ve used social stories to explain Marshall’s autism to him or his friends, or to explain moving to a new house or having a new sibling.  My personal preference is to use Google slides and use actual photos of Marshall as much as possible.  He loves to read the stories repetitively and the photos provide an extra connection.  I have several templates on my teachers pay teachers site if the idea feels too overwhelming. (You don’t need to be a teacher to use the site.)  

Make the “rules” for clothing concrete.

In our house, we have as few clothing rules as possible.  My boys only wear “real” pants (something other than sweats) once a year for family photos, or for any other event that might require them. (Think: piano recital, wedding, funeral.)  I used to lay out clothes for them to be sure they matched, but as they’ve grown and we’ve worked on independence, I’ve turned them loose to dress themselves.  This can get a little tricky, depending on the season.  We made a chart with specific “rules” for what to wear depending on the temperature range.  We also added a weather app to each of their iPads for further independence.  They have all the tools to check the weather and get dressed appropriately without any adult intervention. We’ve now been using this system for years with very few hiccups.

Involve your child in the process.

If you’re like me, you may need to take a long, hard look at your child’s wardrobe. When given the choice, what do they like to wear?  Are their drawers stuffed full of choices, which can feel overwhelming? Are their clothes easy to access?  This book (affiliate link) was incredibly helpful to me.  So far I’ve tackled our craft area and the boys’ dressers using her strategies and it has been amazing!  Allowing kids easy access to the clothes they feel most comfortable in can make a big difference.

Reward your kid for doing hard things.

Stop telling yourself that you can’t reward your kid for something they “should” be able to do.  There’s no such thing as spoiling a child when you’re asking them to do something that is difficult for them!  Every child is different, so it only makes sense that some kids will have no problem switching seasons and clothing, while others will find it incredibly challenging.  The very first time Marshall wore a raincoat, it was for 2 minutes (we set a timer) and we bribed motivated him with a cookie. Does he ask for a cookie every time he wears a raincoat? No.  Did it allow him to try something challenging? You bet! Now he throws on a raincoat when it’s raining and jumps on the trampoline to his heart’s content.

It’s okay to start small and celebrate the little victories: together! And take a look around-- I promise your family isn’t the only one flustered by the changes in season.

Rooted in Waiting

At the tail-end of February, just days before the world began to shut down, our church held its annual Women’s Weekend.  In hindsight, it was the last “big” thing I attended, and it seems like a lifetime ago.  Hundreds of women gathered together in worship, shared meals, shared stories, shared life.  My friend Eva and I hosted a breakout session on a topic we’re all quite familiar with: waiting.  In this season where we all continue to wait-- on normalcy, a plan, a light at the end of the tunnel, or even our next paycheck-- Eva and I thought it might be best to share what we discussed that weekend in this post.  At the bottom of this post, you’ll also find a link to the handout we created — a waiting “choice board.” (Can you tell we’re both teachers?)

Picture something you hate waiting for. Now, consider something you don’t mind waiting for.  Do you hate waiting in line at the grocery store, but don’t mind waiting on a table at a good restaurant?  Does time stand still as you wait in traffic, and yet you love waiting on a highly anticipated movie release? Waiting is weird-- sometimes we hate it and sometimes we love it, rebranding it as anticipation.

There’s a pattern here.  In most cases, the things we hate waiting for are unexpected inconveniences; things that are out of our control.  And oftentimes, the things we don’t mind waiting for are the ones we know we can count on.  We love to wait expectantly for something we’re certain will come.  Stuck in traffic? The worst.  On a 12-hour road trip? How fun! Our perspective determines how we wait.  

There may be seasons of life where things move along at a pleasant clip, with very few hold-ups, uncertainties, or question marks.  Perhaps your life was such before 2020 arrived.  Did you have a steady, predictable routine that was turned upside down?  Did your once-certain plans waiver or fold? 

I used to think that when I got married and graduated college that I would arrive-- that the waiting would be over.  Being a grown-up, having a secure job and being married seemed like concrete pillars, guaranteeing everything else would settle into place.  In recent years, however, we’ve waited on answers about Marshall, waited on the right house in a new town, and waited for the next right step in my career.  Currently, we find ourselves smack-dab in the middle of another huge season of waiting as Wes looks for a job and I re-enter the school year.

These days, it seems we are all waiting on something.  And you know what’s cool?  We are not alone.  We wait together.  And collectively, as a human race, we’ve certainly waited before.

Let’s look at a Biblical example of waiting.  Read Exodus 16, either in your Bible or via the link provided, then hop back over here. 

Did you read it?

On the tails of their glorious escape from captivity, the Israelites found themselves in an anticlimactic holding pattern.  As they awaited their next future home, God gave manna to sustain them.  He asked them to wait on it each and every day.  And what did the Israelites need to do while they waited?  Be obedient.  

As Eva and I prayed over this scripture and formulated our breakout session, we came to the conclusion that God asks the same of us while we wait: that we are obedient. And just as perspective determines how we wait, it can frame our obedience as well. There are three ways we might wait. 

We can wait in anxiety.
Israelites could have been obedient out of fear.  While a healthy fear (read: respect) of the Lord is Biblical, the character of God is that He wants us to trust Him and respect Him out of His great love for us, not the fear of screwing up each and every detail of life.  When we are obedient out of fear, not love, we miss what God has for us while we wait. 

We can wait in independence.
The Israelites could have responded in rebellion.  (“Obedience is unnecessary-- I’ll make my own manna!”) If we’re not careful, it's easy for us to swing to the opposite side of the spectrum: self-reliance and a false sense of security.  Who among us can guarantee with absolute certainty our safety during this difficult season of waiting?  In any season? The answer is a difficult one.  When we declare our independence and self-sufficiency, we miss out on the beauty of God’s provision in the midst of humility and obedience. 

We can abide (continue, hold on, persist, dwell) with the Lord. 
In this scenario, our obedience is rooted in trust and gratitude for who God is.  Who He has proven to be, time and time again, in our own lives and in the lives of so many others.  We can choose to trust His plan without knowing what’s around the next curve.  We can be thankful for the manna He provides each day without fearing if tomorrow’s will arrive.  We can pray through and make each decision, one at a time, as we navigate this pandemic.  Who among us can know what lies ahead? All we have is the here and now, the next right step ahead of us.  

So what do we do while we wait?  What does abiding in obedience look like in our daily lives?  Here are some practical ways to abide with the Lord in our current season of waiting.

Spend time reading the Bible.
God gave us his written Word.  It is living and active, relative even-- no, especially- today in the midst of a global pandemic.  The Bible is full of detailed accounts of real people with real problems who chose to abide when times were tough and the waiting was long.  

Dedicate ourselves to our current responsibilities.  For many of us, these responsibilities have changed dramatically in the last few months- and will continue to change and adapt at a moment’s notice.  What is required of you in this season?  Are you giving it your all? 2020 has forced us all to start from scratch and rebuild.  As we start to return to a new normal, where is our focus?

Be present with the Lord. 
For many of us, the excuse of not having enough time is no longer valid. While some of us are inundated with video conference calls, online classes, or homeschooling, I think many of us have also been met with the reality of slowness and silence.  (If we’re willing.)  If I’m not careful, I’ll spend all of my extra time on my phone or watching Netflix.  Neither of those things are inherently bad, but neither one will allow me to hear from the Lord above the noise of what I choose to fill my time with.  I will never accidentally live a life for Jesus.  My best intentions are nothing without a little extra effort. As we rebuild and move forward, where do we prioritize our time with God?  The Bible tells us that if we come close to God, He will come close to us (James 4:8).  If you’ve never prayed a single honest prayer in your life, it’s not too late.  If you’ve never read the Bible, been to church, or heard a thing about who God is, you’re not too far away.  In fact, you could attend church this week online-- at basically any church around the world-- and no one would ever know!  Curious about who God is? There’s no time like the present! 

 In a sermon a few months ago, the speaker mentioned the idea of walking with Jesus, not ahead of him.  I can think of no better image as I consider how we move forward as people, as families, as a church; as towns, countries, or humanity as a whole.  What is He doing?  When will this all be over?  When (or will) life return to normal?  While we await the answers to each of today’s big questions, let us not lose sight of the Truths we already know. And let us not lose sight of one another as we wait. 

Together. 

Rooted in Waiting Choice Board

Why We Don't Light It Up Blue: Another Perspective on Awareness

April 2 was World Autism Day.  Some may have found it peculiar that we didn’t wear blue or don our puzzle pieces or post a picture of Marshall.

It’s not that I’m against autism awareness.  I hope that those of you who celebrated World Autism Day or who will make autism more visible over the next month are not offended by this post.

The way I see it, parenting a child with special needs has phases.  Yes, there are the normal developmental milestones and stages to work though, just as we do with a typical child, but there’s an additional responsibility that intermingles with those phases and stages-- addressing our child’s disability with them as it becomes appropriate. 

Awareness takes on various forms.  Initially, our responsibility was to be aware of Marshall.  To learn everything we could about him, from the moment he was placed in my arms in the hospital, along the curvy road to his diagnosis and every day that has elapsed since then.  Once we knew his disability had a name, we also needed to become aware of how to help him. To be honest, being aware of autism did not help me parent my child. Getting to know my child helped me parent him.  

As we’ve gotten to know the ins and outs of who Marshall is and how to help him, we’ve had a lot of great advice.  Working with trained professionals was great because they were able to suggest strategies that had worked for other children with similar needs-- some autistic, some not.  And to be honest, many of our successes came from the people in Marshall’s village without titles who just plain get him. As we’ve come up for air after years deep in the throes of the back-breaking, non-stop world of early intervention, our responsibilities have shifted and we’ve entered a new phase: introducing Marshall to his autism. 

One of the things I could never wrap my mind around was wearing a blue shirt with the word autism on it, or passing out puzzle piece keychains to family members, all the while having never introduced the child I was representing to the concept itself.  Setting all stereotypes and struggles aside, Marshall truly doesn’t miss anything. He soaks in every detail of every situation he’s in-- visually and auditorily, and he could read at a young age. We were careful to not talk about Marshall’s autism directly around him until we were ready to address it head on.  This was our choice, and while some might disagree with it, that’s the beauty of parenting -- what’s best for one child might be the complete opposite of what works for another. 

To be honest, I never really set an age for which I thought it would be appropriate to talk to Marshall about his autism-- I figured we would know when the time was right, we would plan well, and it would be a discussion in which Marshall would be old enough to fully understand, ask questions, and generalize the knowledge we shared.  A lot of books I’ve read point to the ages of 10-12. While I wasn’t sure about waiting that long, I didn’t have a sense of urgency to unpack such a complex topic.

Until a little girl started asking about Marshall’s autism.  In front of him.  

When she first started asking questions and using the word autism, I was hurt and offended and a little panicked. (Interesting reaction, huh?) Thankfully, the inner teacher immediately kicked in and reminded me that this sweet little child had no agenda and was only looking for information.  Her well meaning parents had explained that Marshall had autism to help describe some of his behavior differences. This little sweet thing, who I dearly loved, was simply adding to her knowledge base. I answered her questions as best I could and then set to work.  

I knew I needed to prepare to introduce Marshall’s autism to him before anyone else did.

So what did I do?  I went to the library, of course! I knew that there were lots of books for kids about autism that were out there.  I would request them all, read them all, and find just the right one (or two) to use to introduce Marshall to his autism. 

And you know what?  In all of my searching and pooling of my resources, including school counselors and teachers and intervention specialists and therapists, I didn’t find a single resource that would work for Marshall.  While I’m certain that a lot of the books I read may work for older kids or for peers who need to learn about autism, it was almost comical to me what they all had in common. 

All of the resources I found revolved around an extended metaphor.  I literally laughed as I read several of them, imagining my sweet little six-year-old trying to connect the dots.  For a child as literal as Marshall, a story about a zebra’s stripes or a boy’s frisbee wouldn’t quite do the trick. 

I knew I needed to make my own.  I called my friend Heather, one of Marshall’s most important people, and we talked through my lack of findings.  She suggested a social story. Of course! I decided that I would make a social story for Marshall about his autism.  I had the power to create the inner monologue for him. I had the power to carefully choose the first words he ever learned about autism and how it related to him.  And I could do it in a format that would be most appealing and inviting to him: a social story. With photos. On the computer.

I set to work, enlisting a coworker to show me how to best format my book.  We chose Google slides and away I went. I smiled and cried a little as I tried to anticipate how my son’s sweet little brain might interpret this information.  

After a lot of blood, sweat and tears (okay, blankets, coffee, and tears), the finished product was ready.  After showing it to Wes and talking it over, I sat down with Marshall. Not surprisingly, he read through the story repeatedly, asked very few questions, and went on with his day. 

A few times since our conversation, we’ve noticed the fruit of Marshall’s stewing over the subject. We learned that while photos are powerful and useful for most of the pages, the page where I talked about autism needed to be photo free.  Initially, I included a few photos of him doing things that are different than his peers, and he asked if he had autism because he played with the robot that was in one of the photos. I replaced that slide of the book with a link to this video that I tucked away a few years ago.  While it might be a little over a kindergartener’s head, it's the best overall explanation of autism I’ve seen for a kid.  

If you’re heavily involved with autism awareness, that’s great.  We are too-- it just might look a little different over here. We won’t be flying flags or marching in parades just yet.  We’re slowly expanding our sphere of influence beyond Marshall as it becomes appropriate. My hope is, with Marshall’s permission, I might create an adapted version of his social story that he or his teacher could share with his classmates.  But the thing is, if he’s not interested, I’m not interested. 

After all, this is his story to tell and his life to live. Someday, Marshall will have a stake in this game, too.  If he wakes up one morning when he’s 8 or 10 or 18 and asks us to support autism awareness by wearing blue and donning puzzle piece jewelry, we will absolutely do it.  We fill fly the flags and march in the parades and join all the committees with him, if that’s what he wants. It just doesn’t feel like our decision to make at this point.  

Our focus has always been (and I assume will always be) inclusion.  How can we parent Marshall in a way that gives him the best opportunities to function in society with his peers?  How do we help scaffold his interactions with others to support his need to learn vital social skills? How do we leverage his strengths to support his weaknesses? So far, none of these driving questions has lead us down a path of collective autism awareness.

Yet. After all, we’re only 6 years into this game. 

Please know that Autism Speaks is a wonderful organization-- in fact, Marshall’s first preschool received grant money for their aquatic therapy program through Autism Speaks, and we will always be grateful for that opportunity.  I’m never offended when people wish me a happy World Autism Day or want to talk to me about autism awareness month. I’m simply here to say if there’s another parent out there who needs permission to abstain, it’s okay. You don’t have to do it.  We’re all navigating this to the best of our ability, in the best interests of our kids, whatever that looks like. 

Now, inclusion awareness? That’s something I can get behind. 

Life Lessons from a Colorblind Six-Year-Old

I’m really good at arguing.  In fact, I’ve been told many times that I should be a lawyer.  Teachers mentioned it along the way, my parents joked about it, and I even had an academic advisor in college tell me to abandon ship and go to law school.  Maybe they were right, but I have zero regrets. I could never wear a suit every day.

As luck would have it, I still get to practice a little during our argument writing unit. We teach students how to develop a claim, support it with reasons, and to provide evidence for their reasoning.  When we research, we talk about finding credible and reliable sources.  Who wrote it?  When did they write it?  Why did they write it?  We teach our students that in order for evidence to be worthwhile, in order for a claim to have any validity, it has to be trustworthy.

Lately, I’ve been wondering: are the claims you believe based on credible and reliable sources?

Specifically, are the claims you believe about yourself and others based on truth?

Marshall is colorblind.* It’s so interesting to watch him navigate a world where an obvious truth most of us take for granted, distinguishing between colors, is such a gamble for him.  He really hates to be wrong (don’t we all) and has spent all six of his years on this planet memorizing the colors of as many objects as possible in hopes of not getting it wrong.  In fact, he’s so good at memorizing that we’ve had many people (one optometrist included) doubt that he is actually colorblind.  If a color is labeled with the word, he identifies it correctly.  If it’s an object that has been previously labeled for him, he gets it right.  Marshall’s strategy is more or less a color-identifying version of echolocation.  Anytime he encounters a new object, nine times out of ten he will ask whoever is close by what color it is, and then store the information away in some sort of elaborate catalog in his brain.  It’s wild.

When he’s feeling adventurous, safe, or a little bit confident, Marshall might even venture a guess.  “This is… blue.  Right, Mom?!”  The hope in his voice and the gleam in his eyes make me want to lie to him every time he’s wrong.  No one likes to be the one to gently correct him when the object is purple, not blue.  When the marker is green, not orange.  When the square is pink, not grey.  No matter how many times he gets it wrong, it doesn’t seem to get any less disappointing.

Here’s the funny thing about colors, and about reality.  In his mind, Marshall truly believes that pink is grey.  That orange is green, or vice versa.  With each gentle correction, he’s starting to realize his instinct isn’t always reliable.  But that hasn’t always been the case—he used to argue each color claim with tenacity, hoping that maybe we were the ones who were wrong. 

Last year around this time, we drove past a car dealership with pink balloons on each of the cars in the lot, presumably for Valentine’s Day.  As Marshall pointed them out, I said, “oh yeah, Bud, I see those pink balloons!” 

“Actually, they’re blue-ish pink, right Mom? Right?!”

At age 5, Marshall was aware that he often called colors by the wrong name.  He knew there was always a chance he was getting it wrong: but that didn’t stop him from desperately wanted to be right.  Wanting me to affirm his reality.  To him, those balloons were blue, and he wanted so badly for me to reassure him that what he was seeing was real.  That maybe we were both right—maybe the monochromatic balloons were blue and pink somehow.

Oftentimes, I think we behave the same way in the bigger, more high-stakes realities of our lives.  Is that really an opportunity ahead of me, or a dead-end?  Am I really cut out for this?  Is this feeling I’m experiencing based on truth, or misperception?  We perceive our reality, and when spoken in the confines of our own brain, it’s mushy and grey and unsupported.  But when we speak aloud what we’re thinking, when we seek trusted counsel or written truth, we have relief from the weight of questioning.  Much as Marshall relies on labels and verbal confirmation, we too can rely on written truth and the affirming words of our peers when we are unsure of our reality. 

And the thing is, sometimes we will be wrong.  Sometimes the balloon will be pink, not blue.  Sometimes the truth we want so badly to be true just isn’t.  Truth isn’t always neat and tidy, and it doesn’t always fit nicely into the pre-packaged lives we build for ourselves, thinking we know best.  The truth of the Bible, in particular, can feel comforting when it supports our perceptions and rattling when it conflicts with our emotions.

Our emotions are real.  The pain of getting it wrong is real.  The uncertainty of taking our best guess at reality can be unnerving—especially without secondary evidence.   But just as getting it wrong can hurt, not taking a stand, not making a claim, not investigating the evidence can be just as costly. 

I wonder if there are doubts that reign as truths in your mind?
Or truths you might be hiding from?
I wonder if you know you’re here on purpose for a purpose that likely involves risk?

Let’s take a lesson from Marshall: we all need to catalog the colors around us, stockpiling truths for a rainy day.  Because we’re bound to get it wrong sometimes. Bound to feel a little lost or shaken or rattled when the balloons we swore were blue turn out to be pink.   And the truth is, there may just be claim we were born to fight for.

“The grass withers and the flowers fall, but the word of our God endures forever.” -Isaiah 40:8

*Marshall is actually color deficient.  Colorblind means you can only see black and white—people who are color deficient are unable to distinguish between certain colors.  There’s your fun fact for the day.  You’re welcome.

Taking the Next Right Step When You Don't Know Where You're Going

I used to worry (and still do, sometimes) about missed opportunities.  If I wasn’t alert and didn’t carefully consider every possible choice I could make, I was going to miss out on something! Something big! My whole future might be at stake!  I might miss a social outing and not meeting my future husband! (cue laugh track.)  It sounds hilarious now, but those were real, true, fears in my younger years. 

As a parent, I used to worry (and still do sometimes) about missed opportunities for my kids.  For my family.  What if I don’t read a book that could change the course of my parenting?  What if there’s an extra curricular activity for Marshall that’s perfect for him? What I miss the chance to help him meet a life long friend?  What if I’m ruining Joey by letting him live in the shadows of Marshall?  Our culture tells us that more is best—more sports teams, more swim lessons, more art classes, more. More. More. It’s one thing to miss an opportunity for myself—but can I handle the weight of missing one for my boys?

I used to want to know it all.  I thought it was my job to know my future—or at least have a blueprint.  After all, if I didn’t make a plan, who would?  If I didn’t carve the path out in front of me, how could I expect it to be there? A predominant message today is that the future is ours if we take it by the reigns-- eat right, choose the right college, make lots of money, and invest wisely.  Raise your kids without electronics (or with all the electronics to give them every advantage!), and only feed them vegetables (or a balanced diet full of protein!) and never expose them to any germs (or expose them to all the germs so they gain immunity!)  Life seemingly hinges on a set of right or wrong choices. 

But you know what?  The future isn’t ours.  We’re just not that powerful. No amount of money, fame, security or worry can halt a storm, calm a sea, move a mountain or stop the passage of time.  No human body, no matter how healthy we eat or how much we run, will ever be invincible.  I hate to break it to you: you’re not in control.  And neither am I. 

In the face of this reality, it’s easy to swing one way or the other—to worry ourselves into believing we are in control, or to adopt a laissez faire approach of ignorance and apathy.  I can identify with both mindsets—sometimes in the same week.  I’m no less prone to fear, worry or apathy than any other human on the planet.  I won’t claim to have it all together—show up unannounced to my house and you’ll see it plain and simple—but I will say that over the last few years, I’ve been more at peace than ever before.  And it all hinges on how I start my day.

It always begins the same way—I stumble down the stairs and collapse into my favorite chair.  I drink my coffee (with Nut Pods creamer, of course) and breathe. As the caffeine kicks in and the fog lifts a little, I write down my prayers in a journal, read my Bible, and set my mind for the day.

I don’t worry (as much) anymore.  The barrage of thoughts and decisions and fears and concerns and lists that enter my mind constantly has a filter.  When I sit each morning and spill my guts to the Creator of the universe, a crazy thing happens.

The more I empty, the more He fills.  The more I open up, the less I fear.  The more I ask, the more He answers.  Not right away.  Not always in the way I want to hear it.  But I can tell you with great confidence that I am in the palm of His hand.  No amount of money, fear, pain or even tragedy can take me from that place.  I’ve known that logically since I came to Christ as a fifth grader, but in my late 20s and early 30s, I’m learning it anew.  My confidence in my faith is built on watching Him answer my prayers and fulfill His promises in my life. In fact, my journal is a convenient written record of these truths when my faith wavers or my fears return. What initially began as an act of obedience has turned into my favorite time of the day— I wouldn’t trade my quiet time for anything.

In the years since Wes and I have committed to this habit, a lot of big things have come our way.  We’ve wrestled with who Marshall is and how to best help him.  We’ve given up a home we loved in a town we adored to follow the still small voice of the Lord.  I walked away from a job (and friends!) I looked forward to every single day.  I stayed home and, begrudgingly, started writing.  I began a new job with new people in a new town just in time for Wes to lose his job a few months later.  The last few years have been filled to the brim with twists, turns and intersections that were truly rooted in the quiet moments we spent each morning with the Lord.  Had we relied on our own logic and not the still small voice of the Lord, I’m not sure where we would be today.  And to be honest, I have no idea where we’re going—only that we are in the palm of the Lord’s hand.  Each day I’m a little more thankful it’s His palm and not mine.

The Bible doesn’t say I have to have a quiet time.  It doesn’t say I need a chair and a blanket or coffee.  It doesn’t say I have to write out my prayers.  But you know what the Bible does talk about, time and time again?  Spending time alone with God.  Seeking Him and listening to what He might have to say.  Pouring our guts out and laying it all at His feet.  Moses. Joseph. Jesus. Mary. David. Daniel. Esther. They may not have had the luxury of an alarm clock or coffee or a warm blanket, but they found time alone with the Lord.

Maybe you’re thinking you don’t know where to start.
Maybe you’re not really sure what you believe.
Maybe you think it’s too late.
Maybe you think you don’t have time.
Maybe you’re afraid to let it all out.
Maybe you’re afraid of what He might say.

Whatever it is that’s holding you back, the Bible tells us that God’s mercies are new each morning.  He’s a God who has been using the not-good-enoughs, the nobodies, the screw-ups and the late-bloomers to tell His story for centuries.
It’s not too late.
You’re not alone.
And even if you don’t know Him yet—He knows you. 
Right down to the hairs on your head.

I’m far from perfect and I’m not sure where I’m headed, but you know what? He’s not done with me yet.

He’s not done with You yet, either.  I wonder if you’ll hear Him out?

How To Talk to a Friend When You're Worried About Their Kid-- or Yours.

Over the last few months, a few friends have approached me.  Each had a child whose development they were concerned about, but didn’t know how to broach the subject with the child’s parents.  What if they were offended? What if they didn’t realize anything was amiss?  What if nothing really was amiss?  These friends deeply cared for the children they spoke of—that much was apparent.  Here’s what I told them:

1. Prioritize your relationship with parent and child over your fears, worries, and concerns. 
If you’re the right person to speak into their lives, an opportunity will come.  Timing is everything.  Parents need time to come to their own conclusions, face their own realities, and approach you when they’re ready.  More than early intervention, therapy or an IEP, kids and their parents need a village – a group of people who will love and support them unconditionally.  We knew Marshall was who he is long before we ever spoke of it with our friends.  I confided in a few and kept it close to my chest around others while we sorted things out.  Love your friend, care for them, stay close to them—but consider that maybe they are aware that their child is different, and they’re working through it behind closed doors.

2. Pray for an opportunity—and provide one. 
When was the last time you and your friend were in a quiet setting, without others around?  When was the last time they truly had freedom to speak or share any fears they might have?  When was the last time you asked truly open-ended questions, beyond “how are you?”  When we reflect on the time we spend with others, it can be staggering how much of it is consumed by an activity (movie, concert, shopping) or additional people around (church, a coffee shop, a play date, a playground.)  If I truly want to talk to a friend and allow space and time for a real conversation, it has to be intentional.  Consider a setting that would allow your friend to be comfortable and free to talk about something that will likely bring them to tears—a setting without major time constraints or distractions.  A setting where phones are silenced and set aside. When I first confided to my friend Sarah that I thought Marshall might be on the spectrum, we were on a walk, something we did together consistently.  This offered a recurring chance for me to spill my guts bit by bit, as I was ready—I knew another walk with her was never more than a few days away. 

3. Listen to understand.  
Pray for the patience to truly listen to all that your friend may be going through.  They may be raw, emotional, erratic.  Most likely, they’re not looking for you to fix things—they’re looking for you to join them where they are and take the next steps with them.  Things that may seem like a quick fix to you may be much bigger than that.  Do your best to listen and ask clarifying questions—your friend needs to know that you love them and their child.  They need you to reassure them—remind them that this not their fault.  Truly hear them out before offering any advice.  In fact, consider not offering any at all, unless they ask.  If the door has been opened, your opportunities for advice will continue as you walk this journey together.  Be sure to follow up consistently and ask specific questions about how things are going for them and their child – on the phone or in person, in a safe space.

4. Connect them with a resource if you know of one. 
Do your homework if you can.  Are there local resources you’re aware of through friends or your school district?  Are there speech, occupational, or physical therapists others speak highly of that you could recommend?  Do you have a friend raising a child with special needs who could be a support for this person?  I’m always happy to help guide anyone as best I can—send me a message or email! Marshall’s village (and mine) has been irreplaceable on this journey—and we gain members every year.  Most notably, my friends from school with a background in special ed were game changers, as was Marshall’s occupational therapist.  However, not all the crucial members of our village carry a title. Many of them have only one prerequisite—their deep love for Marshall (and us.)

If you’ve read this far, I’d say you’re the right person for the job—you must really love your friend!  Take some time to think it over, pray it over, and find an opportunity to ask your friend how they’re doing.  You might be surprised at what surfaces in the right setting. 

But what if you’re the one who’s worried about your kid, and it seems that no one else is? If you’re reading this and you’re the one who feels isolated, alone, and worried about your own child, here’s my advice to you:

1. Find a safe person.
There could be someone reading this post right now, thinking of you.  Wanting to connect with you, but not knowing how.  Ask yourself—who can I talk to openly? Who truly listens?  Initiate some time with them, one on one, and express your concerns.  They may not have the answers, but they may be willing to walk this journey with you.

2. Ask lots of questions.
Marshall’s pediatrician wasn’t worried about autism.  We were.  Marshall’s early intervention caseworkers weren’t worried about autism.  We were.  You know your kid best—strengths, weaknesses, things that just seem a little “off.” Write it all down.  Categorize it as best you can.  Schedule an appointment with your pediatrician or find a local therapist—speech, occupational, or physical—and set up a consultation. Find the person who will listen to your questions and answer them, or send you in the right direction.

3. Trust your gut.
It’s a sentence worth repeating: you know your kid best.  If something seems off, it probably is.  If you’re not ready to deal with it just yet, that’s okay.  Give yourself time, space, and plenty of grace—and a deadline to talk to someone about it.  I knew Marshall was on the spectrum when he was 8 months old.  He wasn’t diagnosed until he was almost 3.  The journey may be slow and windy, or swift and informative—you are the navigator, and you call the shots.  Do what’s best for your kid.  Take things one step at a time.

Wherever you find yourself in the midst of all of this, please know that you are not alone.  Across time and space there are friends and parents everywhere struggling with the same questions you’re wrestling with right now.   Whether you’re a parent, a friend, or a family member, supporting a child who doesn’t fit the mold is tricky.  It’s messy.  And it’s not meant for you to navigate alone.

Playing Second Fiddle: a Younger Sibling's Story

By the time everything really unfolded with Marshall, I was pregnant with Joey.  While I knew that Marshall had some delays, no one knew for certain whether his challenges would melt into a season we looked back on, or if we were in it for the long haul.  Life pre-diagnosis was grey and fuzzy, full of maybes-- and maybe nots.

There’s so much beauty in the timing of our story. While I don’t think Marshall’s diagnosis would have changed our decision to have more kids, it sure took the guesswork out of things that Joey had already arrived when we received the news.

The season leading up to and directly following Joey’s birth was filled to the brim with planning, phone calls, appointments and errands—very little of which had anything to do with Joey.  Our lives swirled with countless tasks all centered on one thing: getting to the root of Marshall’s issues and getting him the best help possible.

While this may sound stressful or painful or hard, my rose-colored lenses don’t remember it that way.  I just remember being busy.  And you know what? Busy isn’t all bad.  I really thrive when I have purpose.  I often tell people it’s not that I work well under pressure: it’s that I only work under pressure.  And let me tell you, a maternity leave packed to the brim with doctor’s appointments, phone calls, school visits, blood draws and IEP meetings was oddly wonderful for my postpartum life.  Sure, having a newborn is a lot, but Joey’s first few months of life passed pretty quickly in the midst of the constant hum of caring for Marshall.

When September 6 finally came and Marshall was diagnosed with autism, I held my teeny tiny Joey in the teeny tiny room and took a deep breath.  A wave of relief washed over me as the next step of the task was completed.  And then, it occurred to me.  Joey will never know a life without this chaos.   

Joey will never know a world without therapy appointments or visual schedules, sensory breaks or carefully planned outings.
He’ll never know a home without noises or flapping or repetitive speech.
He’ll never know a life without autism.

As I stood and rocked and bounced that 4-week-old baby, I was less overwhelmed by the diagnosis handed down (I already knew) and more concerned with what life might be like for my Joey.  Was he also autistic?  How could I possibly give him the love and attention he deserved from me when I was so consumed with his brother?  Was there something I did wrong in raising Marshall?  Could I avoid whatever mistakes I may have made to give Joey a better chance? 

Raising two children—one with special needs and one without—is quite the picture of unfairness.  On the one hand, my child with special needs cannot help who he is.  He can’t help that he needs support.  He didn’t wake up one morning and decide not to meet milestones, or to struggle to complete normal tasks.  It’s not Marshall’s fault that he needs what he needs, or that our lives need to bend to his.  It’s also not Joey’s fault that he was born into this scenario; one where life has already been boxed in quite a bit through no fault of his own—and no choice of his parents.  Sure, many younger siblings’ lives are shaped by their older counterparts.  The predominant difference here, like many other things, is a narrowing of choices.  It’s not an option to not meet Marshall’s needs.  If we neglect therapy schedules or interventions for Marshall to benefit Joey, what good does that do anyone in the long run?  And yet being Marshall’s mom to the best of my ability has made it difficult to be the best mom I can be for Joey.  That’s the honest truth.

Take last year, for example.  I took a yearlong leave of absence from my teaching job to focus on some of Marshall’s most pressing needs in his final year before kindergarten.  It was my goal to do everything I could with the time we’d been given.  Marshall had back-to-back therapy on Monday mornings.  He had school 4 afternoons a week.  We enrolled him in dance class with his peers on Monday nights, piano lessons on Tuesday mornings, aquatic therapy on Friday afternoons, and a basketball clinic on Friday evenings.  Our schedule revolved around Marshall, plain and simple.  And while I’d love to tell you that I spent an equal amount of time planning thoughtful Joey-centered activities, I didn’t.  Joey’s entire life has truly been lived in the background of the main event: Marshall and his autism. 

It hit me again one afternoon last year, as I watched my sweet little two year old, sprawled out on his belly and playing away while Marshall had aquatic therapy. I realized how much of my year at home had been spent this way—the two of us as spectators, chauffeurs, tag-a-longs.  For a split second, my heart ached for what Joey might experience if Marshall wasn’t his brother. 

One split second.

And then it all melted away.  Yes, there may be things that Joey has unknowingly sacrificed or missed out on, but there are so many other things he has gained.

Joey is kind.
Joey is patient.
Joey is flexible.
Joey loves the little things—trips to the store, the tiniest surprise, hand me down clothes, watching the birds or the trucks or the people passing by.  He loves to talk to anyone who will engage with him.
Joey is happy.

For every negative on the list of things that define Joey’s world, there’s a positive to match.

Yes, Joey was born into a world that revolves around autism. 
But he was also born into a world of endless music.
A world with a big brother who loves him fiercely, in a way I never thought possible.
A world that rejoices with every milestone he passes with ease.   

Joey is one of life’s greatest gifts to everyone around him.  His joy is contagious, his people skills are outrageous, and he is so very kind hearted.  I know that the Lord created him that way.  But I also know that in His kindness he’s used the difficulties our family has faced to help shape our sweet Joey—and multiply our joy in raising him. 

Life will always be a little off balance in the Cribbs household.  Who the scales favor depends on your perspective. 

On Milestones: Why Comparison Isn't (All) Bad.

Milestones are the worst when your kid’s not meeting them.  Plain and simple.  I can’t begin to express the pain and discouragement of hearing that your child—your world, the thing you invest most in-- is not measuring up again and again and again.  You can read the books and follow the advice, and sometimes, the neighbor kid or that friend from t-ball or seemingly all the kids everywhere might still do it first. Effortlessly. Without the blood, sweat, tears, and sleepless nights you’ve endured doing everything possible to help your child progress.

Ironically, we live in a world where beautiful, wonderful, kindhearted people are unintentionally reinforcing this on a daily basis. Month after month we post the stats of our babies – height, weight, skill set. They almost read like the back of a football card.  We rush to post photos and videos of our kids’ first words, first steps, first home runs, first trips down water slides and off high dives.  I think, for the parent of a typical child, it’s cute to read what other kids are doing.  We’re proud of our kids, and we love to see them succeed.  I get it—I’m not bashing the updates we as a society have now come to expect.  I’m just being honest—when your kid doesn’t measure up, they sting a little.  Or a lot. 

Now, I know what you’re thinking.  Just walk away from social media, right?  Maybe.  But does that change the reality?  Do you walk away from the cookouts and block parties and friendships, too?  Whether the comparison happens in person or via the internet, the reality and the sting are the same.  As painful as it was to watch child after child do the things my Marshall wasn’t doing yet, it was part of what led me to the realization that my suspicions might be true.  That something bigger was brewing.  That we might need help.  And that maybe, just maybe, who Marshall was wasn’t a direct failure of my first time parenting.

I’m going to say something that might be wildly unpopular: comparison is not the worst.  In the right context, as parents, comparison may actually alter the course of our children’s development.  Without the sting of knowing your child isn’t where they should be, how would we know they need help?  As much as I wanted to hide from outings with other kids, as much as it was embarrassing to take my giant baby who still couldn’t sit up on his own to play with the kids who were months younger than him and crawling around the room, the reality was the same whether I faced it or not.  My kid was not like other kids.  And you know what? That was okay.  When I bore down and did the hard things and kept going to the play dates, it got easier and easier each time.  My friends still loved me.  My friends still loved my kid.  My friend’s kids still loved my kid.  And the more I immersed us with our people, the easier it became to face the reality of who my kid is.

You see, reading the developmental milestones and watching them in action around you are two separate things.  Yes, our pediatricians ask screening questions at well checks.  Yes, there are general ranges for certain milestones that you should expect from your child.  But your pediatrician only sees your child for 15 minutes at a time—they can really only know what you share with them.  And if I’m being honest, every time Marshall didn’t meet a milestone, I was faced with three options: denial, excuses, or facing reality. Denial and excuses were the easiest— in fact, they were as natural as taking my next breath of air— because they allowed some self-preservation.  If I made excuses for why Marshall wasn’t meeting milestones, the tears were kept at bay.  The fears and worries and doubts were quieted, if only for a moment.  I could keep talking, keep working, keep moving if I pushed those feelings down and ignored my gut.   But to be honest, there wasn’t any peace in making excuses for Marshall’s behaviors or turning a blind eye.  It wasn’t until I opened the door and faced the reality head on (with the help of my village) that I could truly breathe.  Often they were shaky breaths through lots of tears, but they were deep and true and full. 

The longer I allowed myself to hide in denial or shield myself with excuses, the further I was distancing Marshall from the help he needed.  And you know what? Every minute of early intervention counts.  As I teacher, I heard it preached for years.  I read studies.  I watched it in front of my own eyes.  But man alive, it was something else entirely to experience it first hand.  I firmly believe that by the grace of God and the gift of early intervention, my Marshall has been placed on a path much different than the one he would have been on had I hidden in fear.  Yes, he still struggles.  No, it still isn’t easy, or light.  But day-by-day, milestone-by-milestone, we’ve inched our way to where we are today.

If I were to hide behind Marshall’s disability and don’t set high expectations for him, where does that leave us in the long run?  It’s painful and grueling and oh-so-humbling, but there’s no one else to roll up their sleeves and do the hard work of parenting besides us.  Yes, Marshall has had phenomenal therapists and teachers and doctors along the way—a village of people we will forever be indebted to. But they are members of the advisory board, not owners of the process.  The people upon whom we depend for advice, research, and resources are wonderful: but they were not put on this planet to guide Marshall through life.  We were. 

Yesterday, a friend’s son learned to ride his bike without training wheels.  He’s younger than Marshall, and not the first friend who has mastered this feat.  He won’t be the last.  As he shared his big news with us, I braced myself for the usual disappointment.  I was hyper aware of my face, being sure the reaction I gave showed no evidence of the missed-milestone-sting.  And you know what?  I was a little surprised with myself.  Turns out, I didn’t need to worry so much.  I wish I could tell you that my reaction was 100% joy and excitement for this sweet boy.  I would say it was 90/10.  Each time there’s a milestone we miss or one that sits out on the horizon, it gets a little easier, thanks to the ones we’ve conquered in our own timing.  I didn’t want to cry when my friend’s son learned to ride his bike.  It didn’t ruin my day.  The longer I’m a parent and the more I get to know Marshall, the more genuine joy I can have for my friends when their kids do great (or even average) things that we haven’t achieved yet. 

Just after we ran into our friends and they shared their exciting two-wheeled bike news, I noticed the first red leaf of fall.  Honestly, it was beautiful.  I quickly pointed it out to the boys and we oohed and ahhed over it together.  Isn’t it funny how the first of something so small can feel so significant? There will be thousands upon thousands of other leaves that will turn this fall.  In the coming weeks, I’ll smile and enjoy them in mass, and by the end of November, it won’t matter to me which leaf turned first—I’ll be too busy enjoying the beauty of what they look like together.  How the colors play off one another.  How some still cling to the tree while others have long since moved onto the pile of confetti on lawn after lawn after lawn. 

It’s easy to desire that first red leaf.  To want our kids to check off the next milestone, or maybe even be first at something.  An early walker.  Potty trained by age 2.  Riding a bike or throwing a football or climbing Mt. Everest at age 3.  But by the end of each childhood season, the beauty of who our kids are and what they are able to do is a delicate dance that works so beautifully together.  The reality is, when your eyes scan the faces of Marshall’s kindergarten class, it’s unlikely that you could point out who walked at 8 months or at 18, or who potty trained by age 2, or which child spoke in complete sentences first.  You probably can’t tell whose parents cried over their cribs in fear or worry, or whose kids danced by each milestone with ease. In fact, I’d venture to say that your eyes would see nothing but beauty in those warm smiles and sweet voices. 

I doubt you could spot the first red leaf, now that they’re all in season. They’ve made it.  They’re turning.  And what a gorgeous picture they make together.

When Things Are Not Easy: the Hidden Cost of Raising a Child With Special Needs

Recently, a close friend shared a staggering statistic with me- on average, autism costs about $60,000 per year.  This of course, is an average, and when I saw the statistic, I felt sad and lucky at the same time.  No, I have not added up our costs, nor will I ever, but I know that our family personally does not incur $60,000 worth of extra cost for Marshall each year.  But if I don’t shy away from the facts, I can tell you that raising a child with special needs has a lot of hidden costs. 

I’ve been avoiding this post for awhile and, like most things I’m supposed to do, the nagging feeling to act has not gone away, no matter how much I’ve busied myself or made excuses.  My hesitations are two-fold: the first is that I hate complaining when I know there is so much to be thankful for each and every day.  The second is that this is a hard topic to face head on.  It hurts.  It’s messy.  And I don’t care to dwell on it because wallowing in my sorrows won’t change a thing.

Wes and I are incredibly privileged in a lot of ways.  We both have college degrees, which were funded by a combination of academic scholarships and funding from our parents.  We both have supportive families and steady jobs.  Only one of our children has special needs.  Our basic needs are met on a daily basis without stress, turmoil, or extreme circumstances.  We do not fear for where our next meal will come from or worry about the stability of our housing.  In a lot of ways, we are stable and equipped to handle raising Marshall. 

So what’s the big deal? The recurring theme I’ve been faced with is this: raising a child with special needs not only impacts our bank account-- it narrows our options.  And I don’t mean that in a broad, overarching, big-picture sense—I mean that we are faced with this reality on a daily basis.  From clothing and food to entertainment and extra curricular activities, these truths are largely consistent.   

Let’s break down a timely example.  The first day of school is right around the corner.  Excitement is building.  School shopping is an activity I’ve grown up enjoying—the dawn of something new, the excitement of choosing new shoes, new clothes, a new lunch box, new folders and pencils and everything else on the list.  While Marshall’s supply list is identical to that of his kindergarten peers, underneath the surface lurk examples of expense and restriction. 

Let’s talk school shoes.  We can’t just choose whatever shoes Marshall likes, or which ones are on sale, or even the ones that seem most practical.  Marshall’s feet pronate (collapse in), and his ankles are relatively weak.  He has orthopedic insoles, which are difficult to fit into standard shoes.  While velcro shoes would be most beneficial in order for Marshall to be independent, it is very difficult to find a shoe that is wide enough and tall enough to accommodate the insole.  We worked closely with Marshall’s physical therapist to find the right shoe last spring, and we ended up being a half-top lightweight basketball shoe—it was wide enough and tall enough to house the orthopedic insole and provide the support Marshall needs.  However, he can no longer put his shoes on independently, and whatever adult is helping him has to be sure that his foot is situated correctly.  In fact, we ended up removing the orthopedic insoles in his current shoes because we found that if his foot wasn’t situated just right, his heel would push down on the top of the insole, which I assume was relatively uncomfortable (not that he ever complained) and compromised the integrity of the insole itself.  Thankfully, his current shoe seems to be supportive enough without the insoles that he is able to run, jump and climb comfortably.  The cost of the shoes (roughly $80) isn’t the part that discourages me the most—it’s the never-ending search to find the best shoe for Marshall with so many limiting factors. 

Shoes are just one example.  When thinking through Marshall’s lunchtime in kindergarten, I started planning ahead nearly a year ago.  I knew that we would need to pack Marshall’s lunch each day due to his restricted diet. I started researching the best possible lunch box for him, which ended up being a Planet Box.  The beauty of the Planet Box lunch box is that it’s all one piece, it keeps his foods separated, and it has a single latch for him to open and close.  We ended up purchasing the lunch box and a smaller snack size this past winter so that Marshall would have plenty of time to practice.  Since we already have to pack his food whenever we are out and about, we started using his lunchbox in those situations.  Additionally, I purchased the snack size so that he could start practicing the process on a daily basis at preschool in an environment away from home.  Again, the financial cost of the lunch boxes (about $100 for both, not including the insulated bag) is not the issue, as I’m sure we could have found a more cost-effective, plastic solution.  To me, the restrictive nature of having to plan ahead and think through every detail is the larger price we pay. 

In the near future, I don’t anticipate a day where we could wake up late, grab a quick breakfast and send Marshall to school with lunch money to buy a lunch at school.  One of the biggest costs we’ve taken on in parenting Marshall is choosing dietary intervention.  Again, I don’t want to complain or dwell here, because we aren’t technically forced to keep Marshall gluten-free, casein-free and artificial dye-free.  He will not be harmed physically by these foods in an obvious way.  He will not go into anaphylaxis, nor does he have a true allergy to any of these foods.  We have seen a first hand difference on many occasions, and have chosen this route because we believe whole-heartedly that it is in Marshall’s best interests.  That being said, we’ve taken on a burden in this department that extends beyond the elevated grocery bill—we’re highly restricted in our options for dining out, and every thing we do (I’m not exaggerating) has to be closely planned for ahead of time to ensure that Marshall has what he needs.  We can’t run out for a quick dinner because I’m behind on grocery shopping and meal planning.  We can’t send him to a birthday party without planning ahead for an approved treat.  We can’t drop him off at someone’s house without planning ahead to pack meals and snacks for him while he’s there.  We can’t show up for a potluck dinner without also packing a separate meal for Marshall.  To be honest, the price we’ve chosen to pay in this department is to be mentally “on” at all times. 

 I could go on for days with other specific examples: an expensive bike Marshall can ride more easily, bedding to meet his sensory needs, specific clothing that allows him to be as independent as possible, etc.  Again, my intent is not to complain—we’ve been lucky enough to afford the things Marshall needs at every turn thanks to our financial stability, a few grants, and supportive family members.  The true cost is in navigating the research, investing the time and energy, and the unrelenting thought required in each and every aspect of life.  The cost of raising a child with special needs in our family extends far beyond dollars and cents and into mental health and physical exhaustion; the inability to walk away or take a true break from any of it. 

The best example so far wasn’t a sacrifice in the traditional sense of the word—ironically, it was a privilege—but I would be remiss if I didn’t mention it.  This past year, I took a sabbatical from teaching to be home with my boys.  It was amazing and wonderful and I wouldn’t trade it for the world, but the honest truth is that it’s unlikely that I would have taken a sabbatical if I had two neurotypical kids.  We were faced with a harsh reality last spring: Marshall was significantly behind in self-help, self-care skills compared to his peers.  If we wanted him to be as independent as possible, he needed to learn to dress himself, how to walk in a store and stay close to the adult he was with, how to get himself a glass of water or clean up a small mess.  There were many skills he lacked that I couldn’t ask another caregiver to teach him.  Additionally, we were met with the reality that our schedule was unsustainable at that point.  We could not feasibly work full time and keep Marshall in outside occupational therapy, physical therapy, and any extra-curricular activities he may be interested in.  While I wasn’t technically forced into staying home, it was a huge financial sacrifice that we felt was necessary.  It turns out, I’m not the only one.  Today I stumbled onto this statistic:

“Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to work outside the home. On average, they work fewer hours per week and earn 56 percent less than mothers of children with no health limitations and 35 percent less than mothers of children with other disabilities or disorders.” –Autism Speaks

As I head back to work this year, I am grateful for the progress Marshall has made.  I’m thankful for the opportunity to return to work knowing that Marshall will be cared for appropriately at school each day. But the reality is, our savings took a big hit this year—we could not have continued living our current lifestyle on one income.  And I’m not talking about a particularly plush lifestyle, with expensive hobbies or top of the line clothing and accessories.  I’m saying that the honest discussion we had was that if we were to continue to live on one income, we would need to move to a much smaller house.  We would need to consider selling one of our cars.  The lifestyle we can’t maintain with one income, simply put, is the lifestyle that meets all of Marshall’s needs without sacrificing the needs of anyone else in our family, including Joey. 

Let me make it clear that I feel called to go back to work this year, and I’m really excited for the opportunity to head back to teaching.  The Lord has been all over every step of this process—I’d love to share the details with you sometime.  I am 100% confident that going back to work is the right choice, but the reality is that financial necessity was one piece of the decision making puzzle. 

So what’s the take away here?  I’m not asking for pity, and I hope that you’ll understand that 95% of the time, the reality of being Marshall’s mom is not sad and sobering.  It’s not something I dread or regret or wish I didn’t have to carry.  I cannot imagine a life any different than this one, and we are blessed beyond measure to parent both of our boys.  This post is, as is the case with the rest of my writing, simply a response in obedience.  Someone, somewhere, can identify with this or needed to hear it.  My hope and prayer is that this lands on the right screen in front of the right eyes— the rest is up to you.

What Works For Us: the Nemechek Protocol

Last fall, there were a series of unfortunate events that made Marshall’s life, and ours, painful and a tricky.  To make a long story short, he had two major falls that injured the same ankle/leg.  He missed multiple days of school, couldn’t participate in physical therapy, and struggled to enjoy everyday tasks.  As parents, we struggled with lots of why questions.  Why our kid?  Why a weight bearing part of his body? Why the unanswered questions about what was actually injured? Why weren’t things healing properly?  Why the endless doctor visits, medical bills, etc?

The obvious answer here is that things happen.  It could always be worse.  There were lots of silver linings: it wasn’t summer, so he wasn’t missing out on the pool.  I was on sabbatical, so I wasn’t missing work to care of him.  He was still small enough to ride in a wagon to the apple orchard and pumpkin patch.  And the biggest silver lining of all: the entire scenario led us to the last key piece of what works for us-- the Nemechek Protocol.

I’d love to tell you the whole story in person sometime, because it’s a doozy—but I’ll cut to the chase in the interest of time and respecting Marshall’s right to privacy.  Basically, x-rays and examinations brought up some underlying health issues, and a long rabbit trail of research led me to a Facebook group, and in that Facebook group, someone suggested reading The Nemechek Protocol book. 

 For the first time since Marshall was born, I read something that I could truly, 100% resonate with.  I was nodding along as a devoured the book, relating with each and every item Dr. Nemechek addressed.  And for the first time in my life, I was reading a scientific book written by a medical doctor that toed both sides of medicine: the belief that conventional Western medicine is not evil, but that there are risks and side effects for everything (antibiotics, anesthesia, immunizations, etc), AND that diet and environmental factors contribute to our health—even our mental health.

You see, I’ve always had unscientific theories about contributing factors in Marshall’s story.  What led Marshall to where he is today?  I do not carry any guilt, as I know this is the path that the Lord put us on on purpose—but I’d be naïve to think that absolutely nothing I’ve done, either during his pregnancy or upbringing, has contributed to who he is today.  I have never been able to let go of the fact that I ate terribly during his pregnancy.  I’m not talking poor choices every now and then—I’m talking McDonald’s multiple times a week, macaroni and cheese, chicken nuggets—lots of processed food void of nutritional value.  I know that what I ate during Marshall’s pregnancy did not cause him to be autistic—but I always wondered if it played a part.  Dr. Nemechek’s book addresses some of these ideas in a way that makes total sense to me.

The best part of reading the book was that Dr. Nemechek writes about one of the issues that had always felt unresolved to me up to this point: vaccinations.  Now, I know this is a hot button issue in today’s world, and I first want to say that my respect for you is not linked in any way to your choice on whether to vaccinate yourself or your children.  However, two things have always seemed true to me.  The first is that vaccinations are scientifically proven measures used to keep our children safe from potentially life-threatening diseases.  The second is that there are mothers who swear that their child was neuro-typical and regressed after vaccinations.  While I believe that vaccinations do not cause autism, I could never look a mother in the eye whose child regressed after vaccinations and discount her testimony.  What would any mother gain by making an experience like that up?

Dr. Nemechek’s theory on what can contribute to autism beautifully addresses both of those truths.  I really can’t do it justice in my own words, so you’ll need to trust me on this one: both of those truths can co-exist.  Remember that brain-gut connection I told you about?  The one that more and more scientists and doctors on agreeing on?  Well, Dr. Nemechek’s protocol tackles this head on.  Basically, Dr. Nemechek developed a protocol to help multiple concussion victims regain better brain function through improved gut health.  And it worked.  Since the protocol is non-toxic and doesn’t carry any risks, he began trying it with kids on the autism spectrum, kids with ADHD, and kids with developmental delays.  And it worked.  After reading the book, I joined yet another Facebook group and read testimonial after testimonial from parents whose children had improved dramatically after a few weeks, a few months, or a year on the protocol.  Kids going from non-verbal to verbal.  Video after video of victory after victory. I get chills thinking about it as I type this. 

Dr. Nemechek also discusses other symptoms of unbalanced gut health, one of which is acid reflux.  Joey, our youngest, who is not on the autism spectrum and has never shown any developmental delays, has acid reflux.  He developed it as an infant (just like Marshall) and then grew out of it, like most infants.  Interestingly enough, though, after undergoing two surgeries in his first two years of life, Joey’s acid reflux came back-- so much so that he had to be put back on prescription medication.  I could literally read Dr. Nemechek’s book through the lens of Joey and see how this protocol might benefit him too. 

Of course, I talked to Wes in my rapid-fire excited voice every step of the way until I finished reading the book.  We made the conscious decision that we would try the Nemechek protocol, but that we would not tell Marshall’s teachers.  This way, we could truly see if they noticed any differences.  One of the tricky things with diet intervention, like being gluten free, casein free, and dye free, is that we couldn’t really do a blind experiment—everyone who interacted with Marshall needed to know these restrictions in order to maintain the diet plan.  While we definitely saw a change in Marshall with diet intervention, it was easy to second-guess things or assume that everyone was just looking for change.  When we made the decision to start the Nemechek protocol, we were able to do it without being super public—this allowed for us to get some honest feedback on behavior changes.  I vowed to not ask his teacher (as hard as it would be) if she noticed any differences in his behavior.  

Our biggest struggles with Marshall at that point were transitions and protests.  He truly struggled at a very deep level with any transition—from one activity to the next, even with warnings (especially at school), and entering any new space.  I dreaded dropping him off at preschool everyday, not because he would cry and say he wanted to stay with me (he wouldn’t) but because he would dawdle when it was time to go in.  He would be fine, standing along the wall waiting for the door to open, but as soon as the door would open and kids would start filing in, he would freeze and back up.  I wish he could better verbalize what made it so hard for him, but he couldn’t.  Maybe it was the noise, or the change in environment, or visual stimulation of so much movement, but he would freeze and back into me until I coaxed and prodded and pushed him through the door.  Everyday.  We talked about it.  I bribed him.  But it was still really really hard for him, and not just at school.  It was as if the threshold of each door he entered, no matter where it was, was lined with fire.  School.  Home.  Friends’ houses.  Church.  Anywhere we went, the transition was hard and I found myself dragging him.  And heaven forbid anyone were to great him when he arrived!  That made things even harder.

I truly had zero expectation when we started the protocol— in fact, I cringe when I read the phrases “reversing autism,” or “recovery from autism,” in Dr. Nemechek’s materials because I don’t believe there is a true “cure,” nor that Marshall’s autism is always such a terrible thing.  We weren’t looking to cure Marshall—we were looking for another way to improve his quality of life in a natural, non-invasive way.  Basically, the premise of the Nemechek protocol is to rebalance gut health through three basic supplements— a source of high quality omega 3, a source of high quality omega 9, and a pre-biotic.  We also removed Marshall from all other vitamins and supplements, with the exception of the ones he had proven deficits in. 

We started the Nemechek Protocol on December 28, 2018 with both boys.  It really was no big deal, aside from remembering to give them each the supplements each day.  Within a week, we noticed subtle changes that the book mentioned would happen—Marshall was more aware of people around him, more interested in interacting with others instead of being in a separate room, and he desired our attention constantly—much like a typical 5 year old might.  He was still Marshall, of course, but he was definitely more engaged with the world around him.

As we entered the beginning of 2019, we settled into a nice routine.  Marshall had fully recovered from his injuries in the fall and, shockingly enough, he actually showed interest in trying a few extra-curricular activities.  Our policy has always been that we will give any extra-curricular a fair shot (more than one session unless it’s an absolute train wreck) but that we won’t force Marshall into anything he doesn’t want to continue.  We started private swim lessons (we were on a plight to get that boy swimming, as he loves the water!), a basketball skills clinic, and a dance class. 

Marshall expressing interest in trying new things was somewhat unique in and of itself.  What took place when we entered these activities was something else entirely.  My child, who prior to the Nemechek protocol struggled with just about ANY transition, walked into the basketball clinic, swim lessons, and dance class like he owned the place.  Not a single hesitation.  Not a single whine.  Not a single struggle in a new environment with new sounds, new people, and unpredictable routines.  Now, I’m not saying things were perfect—it turns out he didn’t love basketball, and definitely struggled to stay focused in a loud gym.  But dance class went much better than expected, and he absolutely loved it!  He couldn’t wait to go back each week.  His inability to keep up with his peers in that environment was not overwhelming to him, and it was truly a bright spot in our winter.  I honestly couldn’t believe he did as well as he did. 

Now, as I mentioned, I mustered up all the self-control within me and didn’t ask his teacher if she noticed a difference.  I waited. And waited.  His transitions into school had gotten better, and we had developed a behavior chart to keep him accountable and give me feedback on his specific struggles.  His charts were coming home perfect nearly everyday, and I just couldn’t get over who he was becoming socially.  Of course he still had his struggles, but the mere fact that he was willing to go and try new things in new environments with new people was a breath of fresh air.  And the ability to walk through a door with him without any coaxing was something I’ll never take for granted. 

Mid-February, Marshall’s teacher asked how basketball and dance were going, and I shared how well he was doing.  I told her how he waltzed right in without any issue, and she made the comment that she, “felt like he was a different kid lately.”  I couldn’t believe it!  She saw it too!  I poked and prodded a little about what she meant by that, and finally shared what we’d been doing.  She saw a noticeable difference in the classroom starting in mid-January, when Marshall was about two weeks into the protocol. 

Not only did we see changes in Marshall, but lo and behold, Joey’s acid reflux improved.  Even on medication, Joey still had symptoms and really struggled to talk comfortably after a meal—he was very “urpy,” to use our Cribbs family scientific term.  Slowly but surely, Joey’s symptoms improved, and we cut down his dose of medication to once a day.  And then, a few weeks later, we were able to remove him from medication completely.

Both of my children are now medication free, and I truly believe that the Nemechek protocol has been the final piece in the puzzle of what works for us. Our lives aren’t perfect, and Marshall still struggles with plenty—but I am happy to report that we are not in desperation over things we once were—sleep, public outings, new settings, etc. In fact, our current cocktail of consistency, nutrition, chiropractic care and the Nemechek protocol awarded Marshall a break from therapy this summer. No, it’s not forever, and no, he’s not “caught up,” but it sure feels nice to breathe life in in this relative season of calm. I’m confident there will be rough seasons ahead—in fact, Marshall recently broke his collarbone—but after seeing the fruit of our struggles this fall, I’m ready with eyes open to where the Lord will lead us next.

What Works For Us: Chiropractic Care

Marshall was an excellent sleeper as a baby.  He followed all the predictable schedules and routines and slept through the night at two months old.  Between ages 1 and 2, he started to wake up more in the middle of the night, and would often be awake (but happy) for long stretches of the night in his crib.  We tried just about everything—leaving him, rocking him, giving him milk, changing his diaper, moving his bedtime—it didn’t seem to matter.  We were puzzled, but it wasn’t overly disruptive, so we assumed it was just a phase.

Between the ages of 2 and 4, Marshall slept very poorly. I’ll never forget one of the worst nights of sleep ever—it was the night before my last day of school before winter break.  Marshall was 3.  Joey was 4 months old.  Life was busy and hectic and on this particular night, Marshall was awake from midnight until 5am, and then Joey got up at 5am for the day.  I literally got two hours of sleep.  Wes and I were walking zombies.  That was the day I gave up on “it’s just a phase,” or, “some kids are just terrible sleepers.”  I called my pediatrician, asked about melatonin, and we started giving Marshall some the following night.  I didn’t love giving him something to get to sleep, but it was a necessity. 

For a little while, it was nice to at least have an easy bedtime.  Melatonin helps kids fall asleep, but doesn’t help them stay asleep.  Marshall’s preschool at the time was a program exclusively for kids on the autism spectrum. The program was created in conjunction with our developmental pediatrician, who was right next door.  Each day, we filled out a sheet for Marshall’s school folder that updated his teachers on how his morning had been—had he slept well?  Had he eaten?  How was his mood?  This allowed them to meet him where he was, and to meet a basic need, like food, if a child needed it.  After seeing that Marshall’s sleep was very poor, his teacher mentioned that several of her students had had sleeps issues related to low ferritin levels, and suggested we make an appointment with the developmental pediatrician to discuss this.

One appointment and one awful blood draw later, it was revealed that Marshall’s ferritin level was 18—the target is 50.  We were prescribed a liquid iron supplement and were told that it would take six months to a year for Marshall’s ferritin levels to return to 50. In other words, it would be at least 6-12 months before Marshall would sleep well again.  We were devastated, but a little relieved to have a concrete reason for his sleep issues.  The doctor prescribed us clonidine to help him sleep in the meantime.  I argued against it, but was encouraged that helping him sleep was best for his overall development, and we could wean him off of the clonidine once his ferritin levels reached 50.  I reluctantly agreed, as we were all exhausted. 

After a year of supplementing, Marshall’s teeth were stained from the nasty liquid iron and his ferritin levels returned to their normal state.  But when we weaned him off of clonidine, he still could not sleep. I was enraged.  This whole time, I had agreed to give my child a heavy-duty medication (in addition the melatonin he still required to fall asleep) under the premise that he wouldn’t need it anymore once his ferritin levels returned to normal.  I don’t regret improving his ferritin levels, as I think this important for his health; I was upset that it hadn’t solved our sleep issues.  When we returned to the doctor, we were told that some kids on the spectrum just don't sleep, and that we should continue melatonin and clonidine.

I was not satisfied with continuing the medication without an underlying reason for his inability to sleep. Around this time, by no coincidence, I was repeatedly seeing online testimonials of people whose children had a myriad of symptoms improved by visiting the chiropractor.  There was a specific chiropractor just a few minutes from our new house who specialized in kids.  I read success story after success story, but still was hesitant. Finally, one day a friend of mine posted about her experiences on Facebook, and I knew we needed to look into it.  Her son, too, had been a terrible sleeper, and the chiropractor had changed their lives.

I told Wes about these testimonials and how even this normal friend of ours had taken her son there.  We decided to take some time to think it over and pray about it.  Immediately following that conversation, Wes ran into a friend from high school at the grocery store.  Her son was on the autism spectrum as well, and she mentioned that they had just come from the chiropractor. She told Wes all about how great it had been for them—she said it had changed their lives.  I called the next day and made Marshall’s first appointment.

Marshall’s first appointment at the chiropractor was his first day of preschool at his new inclusive school.  It was a day in late February, and I will never forget it.  Joey was at the sitter, I had taken a day off of work, and Marshall and I went to the chiropractor together.  At age 4, having been gluten free, casein free, and dye free for 7 months, Marshall still could not sit or stand still.  He was in constant motion.  Even if he was standing in one place, he would sway from side to side.  In the waiting room, I struggled to keep him near me as he darted from place to place. Marshall was also a bit lopsided—his right side was significantly stronger than his left, and it contributed to his clumsiness. 

During our first appointment, we sat in a room and one of the employees asked us a series of yes or no questions regarding a long list of symptoms.  It was an extremely extensive list – I couldn’t believe the number of symptoms she asked us about.  Afterwards, she did a thermal scan of Marshall’s spine.  Then, she laid two papers side by side— one was the list of symptoms she had asked about, with check marks next to each of the symptoms Marshall exhibited.  The second was the thermal scan.  It turns out, the symptoms were each listed next to the area of the spine they correlated with.  When she laid the papers down side-by-side, Marshall’s symptoms aligned perfectly with the areas of inflammation.  It was one of the craziest things I’ve ever seen. 

I gained a new breath of hope that day.  Marshall was immediately comfortable in the chiropractor’s office, and was happy to comply with the directions given to him.  He laid down on the table, the chiropractor adjusted him, and off we went.  Marshall actually asked to go back, which I found interesting.  We paid the lump sum and agreed to bring him three times a week for 10 weeks.  It was a commitment, for sure, but I was willing to do whatever we could to try to wean him off of medication. 

Halfway through the agreed upon 10 weeks, another scan was done to show which areas of inflammation had been reduced.  I was encouraged that he was making progress, and we decided to try weaning Marshall off of clonidine.  We weaned him off over a few days, waiting expectantly for a miracle.  Our miracle didn’t come.  He still wouldn’t sleep. 

Feeling discouraged, we continued with the treatment plan.  Over the final few weeks, I started to notice that Marshall was less lopsided—the discrepancy of his right and left side was significantly improved.  He also was doing much better with sitting still for longer periods of time, and had done a beautiful job transitioning to a brand new school with brand new kids and a brand new teacher.  I never would have called Marshall an anxious kid—he was just a 4 year old who struggled with transitions and change—but after 8 weeks at the chiropractor, he was noticeably calmer. 

The other thing that blew my mind was how much Marshall loved going to the chiropractor.  He never once complained, and was always content to wait, even when things got busy in the evenings and our wait times increased.  He also started drawing for the first time.  His first ever drawing was a picture of his grandma (which my mom has framed.) His second ever drawing is pictured above—a picture of Dr. Rick, his chiropractor.  Marshall truly loves his chiropractor, and I can tell the people there truly care about him, too.

When the agreed-upon treatment schedule ended, Marshall had another thermal scan of his spine to show where inflammation had improved.  And for a second time, we held our breath and weaned Marshall off of clonidine.  And you know what? He slept.  He was even able to fall asleep without melatonin.

I could not even believe it.  I still get chills when I think about it.  My sweet boy was healthier by the day, and did not require any daily medication.  I was on cloud nine!  I would be lying if I said Marshall is a perfect sleeper—in fact, changes in routine and diet can still cause him to be up in the middle of the night.  I can tell you based on his behavior that an appointment is coming before I even look at the calendar.  Marshall now sees the chiropractor twice a month to maintain the progress we’ve made, and it is worth every penny. 

I can honestly say that parenting Marshall has taken us down road we never expected to be on.  I am a believer in traditional medicine.  Our kids are vaccinated (more on that later.) But the longer I journey down this path with Marshall, the more I find myself on paths I never expected to take—diet intervention and the chiropractor being two of them.  The chiropractor has truly changed our lives, and that’s no exaggeration.  It’s one of those things I always wonder about—what would our lives look like today if we’d never taken him there?  I’m so thankful for the way the Lord has led us on this path, and I pray that we continue to be sensitive to His nudges along the way. 

What Works For Us: Nutrition

Remember how I told you that after Marshall was diagnosed, I checked out all the books in the library (okay, a lot of them) related to autism? Well, there’s one tiny detail I excluded there.  I checked out most of the books on autism, but none of the books that discussed the relationship between nutrition/diet and autism.  I knew they were out there.  I knew I was interested.  I knew I was not ready for that information.

For better or worse, my brain knows its limits.  I put things into boxes and only open them when I’m ready to empty out the contents and deal with what’s inside.  I waited until Marshall was two and a half to open and empty the contents of the autism box.  And when Marshall was three and a half, after wrapping up a busy school year, I was ready to open and empty the box related to diet and nutrition. 

The first thing we did, even prior to my in depth research, was eliminate artificial food dyes.  I knew enough people who swore that it made a difference for their kids, and knew that artificial dyes didn’t offer any nutritional value to begin with-- we had nothing to lose.  Eliminating dyes may sound easy enough, but you would not believe alllll the places they lurk.  White icing.  Macaroni and cheese.  Certain flavors of chips.  Cereal bars.  The list goes on and on and on.  The process got a lot easier once I got to know the usual items we purchased and started shopping at Aldi more frequently. (All Aldi brand foods are free from artificial dyes.) 

Eliminating artificial dyes was an eye opener for us.  It was our first glimpse at what kinds of ingredients were entering our son’s diet somewhat unnoticed, and how they impacted him.  He was a little less volatile without food dyes—it wasn’t a dramatic change, but it was enough that we knew they were worth avoiding.  Once we saw a change in Marshall, I knew it was time to further investigate what other interventions might be out there. 

Back to the library I went.  Wes and I took a surprise trip overnight to see my best friend for my thirtieth birthday, and I spent all of our time in the airport and on the flight immersed in books about the relationship between diet, nutrition, and autism.  It was honestly fascinating, and I couldn’t get enough.  There is a very large population of medical professionals and dietitians who believe that the gut health/brain connection is a significant factor in autism, even if there are disagreements on how to best remedy the issues. 

Reading about this connection over and over gave me more motivation to try diet intervention.  The other significant factor that drove me into the depths of nutrition was my personal preference to keep my child off of medication for as long as humanly possible.  I am not anti-medication, and I’m so thankful that we live in an era where medication exists to help so many chronic issues.  However, with my sweet boy’s little developing body, Wes and I both feel very strongly that we’d like to do whatever we can to allow him to grow and mature without the possible implications of prescription medication. 

I read book after book that shared some of the same concepts, specifically related to gluten and casein.  Casein is a protein found in all animal milks (I didn’t know this) and gluten is a group of proteins found in several grains, most notably wheat.  I’m totally going to botch the science behind this, but basically, there are several studies that show that some people on the autism spectrum lack the ability to appropriately break down gluten and casein.  As a result, the proteins are released into their system and can cause a variety of emotional and behavioral symptoms, such as sleep disruption, mood swings, anger issues, and fogginess.  You’ll really need to do some reading on your own if you’re interested in this because, like I said, these are my less than scientific Lindsay words of how I interpreted and categorized what I read.  A lot of the case studies and testimonials sounded promising, and I couldn’t wait to get home, get organized, and get started with some attempts to modify Marshall’s diet and see if it would help.

It seemed as though a gluten free, casein free diet (GF/CF) was the most common intervention.  The thought of eliminating these two major proteins was overwhelming, and I knew I needed to enlist help for the process.  I scheduled an appointment to discuss our plan with Marshall’s pediatrician, and asked his teachers and therapists if they had encountered students on the spectrum who followed a GF/CF diet.  With lots of help and guidance along the way, we were advised to start by eliminating gluten, as it takes longer to leave a person’s system, and to keep written notes of any differences over the course of the first 6 weeks.   

Marshall’s first gluten free day was the day after my 30th birthday.  We were attending a birthday party for a family friend that day, and it was sort of a trial by fire situation.  While being on a restricted diet can be challenging, I wanted to be sure that Marshall didn’t miss out on normal life and, most specifically, social situations. It’s kind of ironic that diet intervention can be a isolating for a kid who needs to be immersed in the world as much as possible.  Anyway, I planned ahead, told Marshall that he would have a treat when everyone else had cake, but his would look a little different.  We ate lunch before the party, he played and had fun and ate a gluten free cookie when it was time for cake.  It was a success, and slowly but surely we made our way through the first six weeks.  Marshall was already a pretty picky eater, so we essentially found gluten free versions of his favorite foods (cereal bars, pretzels, crackers, chicken nuggets, and bread for peanut butter sandwiches.)

I read in several books that some people’s symptoms could get a little worse before they got better, and we experienced this within the first few days of removing gluten from Marshall’s diet.  He has not been a great sleeper for a myriad of reasons (more on that in upcoming posts), but he was especially restless the first few days we removed gluten from his diet.  As we gained our footing and became more confident, it got easier and easier to adapt and continue on with normal life.  By the end of the six weeks, we noticed that he was overall calmer and less “foggy” in his interactions.  We also reflected back on instances when he would have meltdowns and the only thing (literally, the only thing) that would calm him down were certain foods with gluten in them, namely goldfish.  One particular instance that will forever be etched in my mind was a vacation we took the summer before he was diagnosed.  He literally lost his mind when we arrived for some reason, was completely irrational, and the only thing that calmed him down was goldfish crackers.  It was like Jekyll and Hyde.  In the moment, I was so emotionally overwhelmed and upset that I couldn’t calm my child down that I was just happy something settled him.  Cuddles or typical comforting techniques had never been soothing to him at that point, so we were often at a loss on how to calm him down when he was hurt or sad, much less upset or angry.  Many of our revelations on the power of diet intervention have been based less on what we see and more on the absence of things we never noticed until they were gone.  There were many behaviors that we attributed to other issues that improved with diet intervention.  He is less foggy, more rational, and has significantly fewer meltdowns as a gluten-free child.

After 6 weeks of being gluten free, we removed casein as well.  Removing casein was a little easier, as we had already taken on label reading and fact checking and had gotten used to being vigilant about what Marshall ate.  Marshall loved milk as a toddler, but had stopped drinking it cold turkey after a stomach bug when he was two and half.  This helped the casein removal process significantly.  Most of the products that we had started feeding Marshall (gluten free chicken nuggets, gluten free pretzels, etc) also happened to be casein free as well.  The hardest thing about removing casein was eliminating gluten free pizza from our rotation, and having to be overly cautious about other processed food.  Casein can lurk under a lot of different names, so it can be tricky to find products and be 100% certain that they are casein free, unless they are labeled as such.  We fell in love with Enjoy Life products, as they are all gluten free, dye free, and casein free. 

Casein only takes 7-14 days to leave a person’s system, so once we had been gluten free for a total of 8 weeks and casein free for a total of 2 weeks, we felt comfortable reintroducing them to see what would happen.  I honestly didn’t know what to hope for—part of me hoped that there would be no “reaction,” and we could go back to feeding him without too much thought.  I missed eating at restaurants and making last minute decisions about meals.  I missed attending social gatherings without thinking through what food would be there and what we might need to bring for Marshall to feel included.  The other part of me hoped, in a weird way, that we would see a “reaction” and know that what we were doing was working.  Marshall doesn’t have any true allergies—he doesn’t have true medical reactions to these foods—but his behavior seemed different enough that we assumed a diet free of these items was helping him. 

We “saved” our reintroduction for a family outing.  Now, if we were being scientific, we would have just given him one thing (gluten or casein) and not both so we could identify if one or the other was helpful.  We were too impatient, if I’m being honest, and the perfect opportunity presented itself on our annual trip to the pumpkin patch.  Wes loves donuts, quite possibly more than any other food, and the pumpkin patch we visit makes fresh donuts.  They are amazing.  I don’t care for donuts, usually, but I eat one at the pumpkin patch every year.  Marshall, of course, loves them too, so we decided to let him have one.  We sat down as a family- Wes, Marshall, one-year-old Joey and me.  We watched Marshall eat his donut, somewhat cautiously, and enjoyed the nice weather.  When Marshall finished his donut, he asked to go home. 

The rest of the weekend seemed relatively normal—nothing stands out to me as I reflect on it.  I had read that a behavioral “reaction” to gluten or casein was most likely to occur 1-3 days after consumption, which is the other reason that people often have a hard time attributing behaviors to certain foods.   Marshall ate the donut on Saturday.  On Monday, two days later, he had an incredible meltdown at preschool, and screamed and cried almost the entire three hours.  Mondays were his favorite day at school—they got to swim!  He was inconsolable, and the teachers could not find a cause.  He had no fever, no illness, and the next day he was fine.  We knew in that moment that we needed to continue down this path we were on. with checkpoints along the way.

It has become part of our natural life to plan ahead for Marshall and food.  Over the last two years, we’ve slowly cleaned up what he eats, and I’m proud to say that not only is Marshall gluten free and casein free (with the occasional break for ice cream because he handles casein better than gluten), but he now eats very little processed food.  Our initial gluten free, casein free meal planning was mostly survival—we replaced the foods he was willing to eat with foods that seemed similar.  It really was just a glorified junk food diet.  That phase definitely served a purpose, as it helped us to see that GF/CF food, even processed, was a step in the right direction.  I knew it wasn’t where I wanted to land, but I was happy to see improvements in my son.

I’d be lying if I told you that diet intervention was easy.  But, I can promise you that it has been worth it.  Like anything, it really has been a process.  We eliminated dyes, then gluten, then casein, and slowly, as we got into a routine, we removed as many processed foods as possible—when we finished an item, like cereal bars, we just didn’t buy any more.  Being at home this year gave me the freedom to really work through this process and find what works for us—I currently bake Marshall’s bread and any baked goods he may consume from scratch.  This may not be something I can maintain forever, but it sure feels nice to know exactly what’s fueling him.   I also found an integrative medicine doctor who helped me make sure Marshall was getting key nutrients for his development.  Based on a few quick blood draws, she was able to guide me on supplementing a handful of key nutrients that Marshall’s restricted (and picky) diet wasn’t providing. This gave me peace of mind to continue on the path we’re on.  

If you told me two years ago what Marshall is willing to eat today, I wouldn’t believe it.  I’ve always heard success stories about how even the pickiest of eaters adapt over time, but I’m truly amazed each and every day.  I wouldn’t trade one minute of the over-planning, expensive grocery trips or late nights in the kitchen preparing for what lies ahead.  Marshall is 100% medication-free, and I attribute some of that to our diet intervention. (You’ll have to stay tuned to hear the other factors that I believe contribute to our current medication-free state.)

One final note that’s important for me to include: there is no judgment here for how you choose to feed your child.  Before I was ready and interested in diet intervention, Marshall ate lots of fast food, processed snacks, sweets and dyes.  I was surviving, and we were happy in that phase until we weren’t.  Moms need to stick together—we know our kids best and we’ve got their best interests at heart.  Our nutrition is far from perfect, and my kids still eat very few vegetables—but hope is on the horizon.  There’s always room for improvement. 

If you’re asking my advice, I’d say take the next step you know you can handle and go from there.  Read the testimonials.  Go to the library. Find a medical professional who is on board and willing to help.  Talk to your spouse and the people in your child’s village and build yourself a support team.   Leave the box closed if you’re not ready for it yet—it will be there.  Love your child the way they need it today, and don’t be afraid to try something “out there” for the sake of your kiddo.  I’m living, breathing, McDonald’s-loving proof that change is possible—and beautiful.

What Works For Us: Consistency

The first pillar of parenting that has truly saved our sanity and created peace in our world is consistency.  Now, you might be thinking, of course, Lindsay.  Consistency is just plain good parenting.  And I would agree!  But the level of consistency I’m talking about here is enough to make the most organized person on the planet (Wes) a little overwhelmed. 

I remember when Marshall had just been diagnosed, and we were making plans with some friends.  I was talking through what we were going to do, what order things would happen, etc, so that I could communicate them clearly to Marshall.  I explained to my friend that Marshall does best when he knows what to expect and I remember her saying, “if he wants things to happen a certain way all the time, is it better to keep things predictable or better to teach him to adjust?” 

The question caught me off guard a little bit, and I spent some time examining my motives.  Was I just keeping things consistent to appease him?  Would a trial by fire, loosey goosey approach better suit him? 

The bottom line is this:  in order for a child to learn to be flexible, there has to be a routine, a “norm,” a pattern to break from.  None of us, myself included, would function well in complete chaos—not knowing when or where or next meal would be, not knowing when to expect people walking through the door, being unsure of when to expect quiet or noise, productivity or calm.  Regardless of how laid back each of us may be, we know certain things to be true about the world.  For Marshall, creating a foundation of what to expect has been crucial to his success.

Now, let me tell you something.  Consistency might sound easy, but it’s not.  In fact, it’s utterly exhausting.  Planning ahead for my own life (meals, groceries, chores, logistics, social events) is a lot to begin with.  Planning through the eyes of a child, especially one with special needs, takes things to a whole new level of crazy.  Being a teacher, I’ve practiced this in my classroom for years—planning instruction down to the minute, adapting schedules for field trips and assemblies, anticipating and planning for student needs.  It’s second nature, to a certain extent, when you’re used to doing it 40+ hours a week.  The reality of bringing that level of intentional thought home was a little overwhelming.  I really had to come to grips with the fact that it was no one else’s job but my own to meet Marshall’s needs and help him navigate the world.  There was no quick fix or easy answer for things like learning to use public restrooms (noisy hand dryers, other unexpected noises) or even entering a crowded room (restaurants, sporting events, cookouts, social events.)  Just because these things were easy for others didn’t mean we were entitled to that same level of ease. 

Let me just take this moment to introduce a word that will seem out of context: grief.  A wise mentor once told me that it was okay to mourn the life I thought I would have in each season of my child’s life.  If I’m being honest, I was a little offended at first.  Mourn what?  I have a happy, healthy, beautiful son.  And by the grace of God, that’s true.  I don’t have much to grieve—I haven’t missed out on much so far.  But in the moments when the it’s not fairs creep in, I’m reminded that sometimes things are a little harder for us than they are for others.  And that’s just the way it is.  Recognizing it and moving on have been great repetitive steps for me.  We all grieve things we thought we were entitled to from time to time—in this realm, sometimes they are just things most people take for granted.

The day I made a visual schedule for our life at home was one of my brief moments of grief.  I was so annoyed at the painstaking work I had to do for something as simple as what our day looked like when other kids were happy to run and bounce and climb and play without a care in the world.  I painstakingly planned out our unstructured days (like summer) and pieced them together, one Velcro strip at a time.  We, of course, paired the visuals with verbal descriptions of what the plan was, but for a long time Marshall truly needed the visuals as a comfort and guide.  And as annoying as it was to plan our every move—and stick with it—it worked wonders for us. 

You see, once Marshall knew he could trust what we said and count on the plans to happen in the order presented to him, it allowed him to relax.  He was less on edge.  It took much more for him to have a meltdown.  And by golly, the little things started to rattle him less once he knew he could count on the big things.  Putting in the hard work of being consistent with every thing we could control gave Marshall the freedom to practice his ability to adjust with all the things we can’t possibly control.  He has learned to better adjust when things don’t go as expected because we have given him the foundation of what he can count on. 

We have chosen the hard road of predictable bedtimes, meal times, meal routines, and expectations for behavior; warnings before transitions, detailed explanations of social events, and an overall over-planned life.  Wes and I talk through what to expect when we go places, what we plan to expect from Marshall, and what our plan is if things don’t go as expected.  Are you tired from reading that sentence?  You’re right—it’s ridiculous and just as exhausting as it sounds.  But it’s just plain the way things are.

We have our moments.  We have evenings that don’t go as planned that may bleed into days that don’t go as planned and let me tell you—we can see a difference in every area of Marshall’s demeanor and behavior.  The more we dig in and choose the hard work of consistency, the more we reap the benefits of the trust we’ve established with our son.  He knows he can count on the things we say—and when we mess up or life happens, he’s better suited to appropriately assimilate that information.

Last week, our family took our annual beach vacation.  Seven glorious days of sand, sun, water and unstructured life.  We did not take a visual schedule, but we did have a plan each day, and we communicated it as best we could.  And, for the most part, Marshall was fine.  Isn’t it funny how sometimes, the benchmarks and milestones of childhood aren’t the traditional ones, like preschool graduations and birthdays and first and last days of school, but rather the passage of time between annual traditions?   When I reflect on our beach vacations over the last five years, it’s enough to make my jaw drop.  Our lives have changed so much year to year—and Marshall’s ability to “go with the flow,” has improved dramatically.  Like anything, I think it’s easy to play off this improvement with things we don’t control, like the fact that he’s getting older, but I can tell you in my heart of hearts that the hard work has paid off, and will continue to pay off, as long as we’re willing to do it. 

Sure, there are rough days and there are days we just want to throw in the towel.  There are days we miss the mark or skip a step or just get plain lazy.  But the fewer and further between those days are, the happier and calmer our kids are—both of them.  When I think of the areas where we get the most bang for our buck in parenting, I can tell you without a doubt that consistency is one of them.   

To all the other over planners out there, hashing out every detail of the coming week, wondering if it’s all worth it: I see you.  I’m with you.  We’ve got this.  

I Can't Do It All: Confessions of a Mom Who Thought She Could

When I came to grips that Marshall had developmental delays, I was instantly on a conveyer belt.  The ground beneath me began moving backward, slowly at first and picking up speed as reality set in with each passing month. 

At first, I panicked a little.  I looked around, like I imagine all moms do.  My friends were not on the conveyer belt.  All around me were women walking through motherhood at a leisurely pace with their typical children.  And I was drifting further and further away, scrambling.  It wasn’t their fault, and I’m not sure they noticed. Mostly because I tried my hardest to pretend it wasn’t happening.

Fear and a hint of denial told me to shake off my emotions-- if I worked hard enough, we would catch them.  We could hop off of the conveyer belt if we picked up the pace and put in enough work.  Moved a little faster.  Did the homework.  Started the therapy.  Completed the exercises.  But as time marched on, I came to terms that the pace of the world was not our pace.   

Our conveyer belt is permanent.  It is not man-made, it is not a state of mind, it is not anyone’s fault.  It’s just reality.  Sometimes the pace of the belt quickens, and it’s easy to feel that the world around us is drifting further and further away.  Sometimes the speed tapers a bit, and the resistance feels manageable.  But it never stops moving. 

Have you ever tried to go to the grocery store without a cart or a basket?  You think, I can handle this—I’m only getting a few things.  But as you reach for the bananas you remember you need an onion.  As you walk by the bread you remember that you need peanut butter.  And then, disaster strikes.  Your heart stops for a minute.  You need milk.  You look at what’s in your already packed arms.  You frantically scroll through the items mentally: What can I set down?  The bananas?  The granola bars? Do I really need this onion, or could I come back for it later? You have to make room for that gallon of milk, and a difficult decision is before you.

You hands get full when you’re parenting a child with special needs-- while you’re on the conveyer belt.  Stop and picture that for a second.  I’m not giving you this metaphor for sympathy or as an exaggeration: in my experience, that’s exactly what it feels like.  Life is still moving forward, time pressures you to make the right call, and your hands are overflowing with essential components of raising your child.  You are constantly faced with a difficult decision: what can I set down and come back for later?  What can I carry while still keeping pace with the belt below my feet? Your child needs to be fed, clothed, bathed, cared for, nurtured, enjoyed—holding those essentials as a parent is difficult to begin with!  Now add therapy schedules and cost, phone calls to insurance companies, and a wealth of helpful information on what to do to help your child.  Your arms sometimes overflow with good things as the parent of a special needs child: the problem is, there just aren’t enough hours in the day to grasp them all in every season.  And so, the balancing act of choosing the right things for right now is never ending.

As a working mom, it was easy to give myself grace.  After all, the evenings are only a few hours long, my kids at school needed me in an entirely different way than my kids at home, and we were in a constant cycle of work, picking up and dropping off kids, grocery shopping, therapy appointments, laundry, etc.  We were staying afloat, but it was easy to cast the blame on working full time.  I couldn’t possibly be the best mom ever and do all the things when I was working. 

I’ll let you in on a secret, though.  I honestly thought I could do all the things if I stayed home.

That’s the truth.  I had a vision of who I would be on sabbatical this year.  My house could be clean!  We would do all the things!  We would eat healthy and budget well.  I would work on all of the skills I was supposed to with Marshall every single day.  We would go on adventures and visit the library on a regular basis and everything would be magical.  You’re laughing, right? We all know that’s not how this story ends.

I’m here to tell you that my kids have learned a lot and that this year at home has profited us greatly in every aspect outside of finances.  But.  The gains we’ve made and the successes we’ve had and the things we’ve accomplished have been at a slow, uphill, often erratic pace.  Nothing has been linear.  Nothing has felt complete.  The juggling act continues.  The conveyer belt still runs.  The air just flows a little more freely around me. 

I will never have it all together.  Maybe you’re wiser than I am.  Maybe you’ve already recognized this reality.  But I think, if we’re being honest, we all have that deep down, deep-seeded thought that if we could just ­­­­­­­_____________, life would be easier, more manageable, stable. 

If I could just pay off my debt.
If I could just make it until our kids are in kindergarten.
If I could just lose 15 pounds.
If I could just keep our house clean.
If I could just find a better job.
If I could just _______________.

The reality is, there’s no statement in that list that would make life perfect.  There is no magic ticket, no escape from the balancing act or the conveyer belt.  The only truth in all of this is that the hard work does pay off, whether we see results right away or not.  And that the grace of Jesus is for everyone. 

This year, as I turned my focus to my kids and set aside my career, my kids learned new things.  They became more independent.  We laughed more.  We played in every snowfall.  We stayed in our pajamas and read book after book after book after book.  Our days passed quickly with grocery trips and school drop offs, rest times and sensory bins.  The mundane was my reality this year, and I couldn’t be more heavily steeped in peace. 

As I head back to work in the fall, our pace will quicken and the crazy will increase.  I will mourn the absence of this quiet year, but I’m ready to step back in with open hands.  I’m breathing in the relative calm before the inevitable storms ahead, and I’m packing one of my favorite quotes for the journey:

“The smallest deed is better than the greatest intention.” –John Burroughs

It’s a great reminder that even if I can’t do it all, I can do something.  And that something is better than nothing.

No, I can’t do all the cute activities I see on Instagram.  But I can do one every now and then, with the supplies I have on hand or a quick trip to the store. 

I may not be able to make it to the library weekly with my kids.  But I can go on occasion when it makes sense in my schedule. 

I may not have the best boundaries with screen time every day.  But I can plan differently for tomorrow.

I may not be able to handle all of the homework for therapy this week.  But I can focus on one small skill at a time, instead of trying to tackle them all at once. 

So if you’re wondering what I learned this year at home, that’s it in a nutshell.

My name is Lindsay and I don’t have it all together. 

And I never will.

Praise the Lord for his unending grace—on conveyer belts, in juggling acts, in motherhood and in whatever we will walk through next. 

Inclusive Education: Why It Matters, and Why We Don't Always Choose It.

Countless research exists on why inclusion is important.  A lot of what I learned about inclusion accompanied my degree in education, and my experience in the classroom.  Inclusive education is powerful, plain and simple.  And yet, it isn’t always the best option for every student 100% of the time.

Our plan was for Marshall to be in an inclusive public school environment from day one.  When he was diagnosed with autism a few days before his third birthday, the action steps given to us included contacting the school system to request an evaluation for a potential IEP (Individualized Education Program), and finding a preschool environment for him.  One of our options was the preschool provided by our public school system, which is an inclusive environment with 50% students on IEPs and 50% peer models, who do not require IEPs.  I assumed that this would be our best choice, as a public school teacher myself, and a firm believer in inclusion.  However, I am also a firm believer in having all the facts before making a big decision, so I asked what our other options were.  There was another option that would not be an inclusive environment – it was actually a preschool program for only students diagnosed with autism.  The class sizes were capped at 6, and there were always at least two adults in the room.  As an educator, the idea of Marshall going to school without any peer models sounded unacceptable.  As a mom, the student to adult ratio of 6 students per class and built in aquatic therapy intrigued me. 

Before we left the developmental pediatrician’s office the day Marshall was diagnosed, I asked the nurse what she would do if it were her child. Without batting an eye, she said she would choose the non-inclusive program.  The program was actually right next door to the developmental pediatrician’s office, and had been developed based on a need the doctor felt existed to prepare students on the spectrum for an inclusive kindergarten setting. 

When we got home, I told Wes that I planned to observe both environments firsthand.  My mind was already made up that Marshall would go to the inclusive public preschool-- I just needed to rule out the non-inclusive environment.  

The day I visited that school “just to rule it out,” I left Marshall with a babysitter and wheeled little 5-week-old baby Joey into the classroom in the stroller.  I camped out in the corner and watched the students come in quietly, unpack their own backpacks, and check a visual schedule.  They sat down at a table, played with the toys on the table appropriately, and had a conversation about what they were doing.  I’m pretty sure my jaw hit the floor at that point, and it may have rested there for the remainder of my observation.  I remember thinking, are these boys even on the spectrum?! Marshall is so far from unpacking a backpack and having these kinds of conversations! 

Still, my skepticism was stronger than my appreciation of what I observed in those first few minutes.  A third student entered, and he was very upset.  He was crying, screaming, kicking bookcases.  That’s what I expected to see, to be honest.  That’s what I wanted to protect my sweet little Marshall from.  And yet, I watched as one of the teachers calmly greeted the student, gave the expectation that he sit quietly, and shared that he could have his breakfast once he calmed down.  (He had walked in with a bag of Cheerios.)  She walked away and gave him some space, and he continued to kick, scream and cry.  I wondered what she would do next. 

A few minutes later, she came back, repeated the direction with fewer words, and provided a visual that showed a person being quiet.  She pointed to it, and pointed to his breakfast, then walked away again.  Would you believe that that sweet little boy sat down quietly? Never in a thousand years did I expect him to.  But he did.  She praised him, handed him his breakfast, and he happily ate it.  And do you know what?  I watched that little boy have the best day following that initial incident.  He followed directions, smiled, participated, and worked hard. 

I was sold.  This was what my Marshall needed.  If I wanted him to be in a general education classroom with his peers someday, this was our best starting point.  I came home like a kid who just visited their favorite team’s batting practice—I must have talked a mile a minute about all of the wonderful things I saw and how much it would benefit Marshall.  Wes, wonderful man that he is, smiled and nodded and agreed to do whatever I thought would be best.  Over the next few weeks as my maternity leave wrapped up, we had meetings and evaluations, developed Marshall’s IEP, lined up a driver to take him to school each day and transport him to the sitter afterwards, and managed to get him started just two days before I went back to work. 

For us, the choice for Marshall’s education has to be fluid and based on present circumstances.  Really, I would argue the same is true for any child—as parents, we make the best choices we have in our current situation and leave the future problems in the future where they belong.  We knew that Marshall would get structured time with his peers with our amazing babysitter, Di, and would spend the other half of the day getting very direct intervention from professionals.  It was our best choice for that first year and a half, and I have zero regrets.

While school is an important choice in regards to inclusion, there are so many other opportunities for inclusion outside of school.  With both Wes and I working full time, our kids have had to be away from us for 40 hours a week, and that choice, in my opinion, has had far bigger implications than even the preschool setting we choose for them.  The sitter our boys have attended for the last few years is a legend in our region—she has been watching kids for nearly as long as I’ve been alive.  I’ve watched countless faces light up when they hear that our boys go to Di’s house—I’ve met many who know from experience just how wonderful she is.  Di is kind, patient, and gentle, and yet she provides structure and boundaries.  At Di’s house, Marshall (and Joey) sang songs, made crafts, played in sensory bins, fed chickens, visited cows, and got plenty of fresh air.  Di was wonderful with Marshall from the very first day—she adapted art projects when he didn’t want to touch the paint or a wet sponge (she used a clothes pin so he could hold the sponge without touching it!) and allowed him to watch music time activities until he was ready to join.  Di “gets it,” and will forever be part of our village.  At Di’s house, Marshall had plenty of exposure to peers in a structured social setting, so we knew that he wasn’t going to completely miss out on that inclusive factor.

As with any beautiful educational scenario, there came a time when I knew that Marshall’s preschool setting was no longer the best fit for him—he had made lots of growth and had gained many skills, and was ready to be in a class with his peers. Wes and I had learned lots of ABA techniques from his teachers and therapists, and felt more confident in how to instruct Marshall in his day-to-day life.  We researched local school districts, visited a preschool in a neighboring district, and the rest is history.  We moved our family a few minutes up the road, enrolled Marshall in public preschool, and he has truly taken off. 

While I’m a firm believer in the beauty of his current inclusive setting and his phenomenal teacher and therapists, I also believe wholeheartedly that his days outside of an inclusive classroom built the foundation for his success.  We are so thankful for Marshall’s educational journey to this point, and are content to watch it unfold one year, or sometimes one month, at a time.  It’s really easy to get caught up in the long, winding road of wondering “what if,” but I can tell you from just a few years of our journey that it’s all irrelevant.  We never planned for Marshall to be in a non-inclusive environment, never planned to move mid-school year and transfer schools in late February, never planned for me to be home this year to teach him self-help skills, and truly never thought Marshall would go to elementary school without at least access to a paraprofessional—but all of those have become part of our journey over the last two and a half years.  In parenting, and life, we really can’t see around the next bend, no matter how far we crane our necks or squint our eyes.  We just have to take the next right step in front of us.

When choosing the best educational environment for our kids, with or without special needs, I truly believe the setting has to be one we can walk away from peacefully.  I also believe that the educational choices we make for our children start at birth—if you work, who does your child spend their days with?  Their worlds are being molded and shaped by the people who speak to them, challenge them, teach them boundaries, read them stories, and show them the world.  We have been so blessed for both of our boys to have great educations thus far— they’ve been safe, cared for, and instructed with respect, right from the very start.  To those of you reading this that have cared for our children: thank you, from the bottom of our hearts, for being part of their village and part of their educational upbringing.  We are so thankful for each kind, careful explanation, each enthusiastic reinforcement, each gentle correction. 

While long-term goal setting has a time and place, we are short-sighted in these younger years with our kids, specifically with Marshall.  There are just too many factors in development and life to make sweeping declarations about what we will or will not do for our children and their education.  In my limited experience, inclusion and separation are both powerful tools in the right timing— and we all have to make the best decisions we can for our kids, one step at a time. Neither parenting nor education are a one-size-fits-all endeavor— I’m so thankful we’ve been blessed with the right fit each step of the way.

Inclusive Parenting: Why It Matters, and Why It's Hard.

Inclusion is most typically used as an educational term, meaning that a child with special needs is included in the classroom with their typical peers as much as possible.  While an inclusive environment for education is important to me for Marshall, my biggest passion is for a globally inclusive parenting model.

Wes and I have always had a general stance of inclusion until it doesn’t make sense.  That’s the basic umbrella that we operate under, knowing that each and every circumstance will vary.  Our choices for including Marshall with his peers are much broader than just education; we consider sports, music, dance, church, birthday parties, sporting events, etc. 

Here’s the truth: lurking in that list above are things that we have not chosen inclusion for, for various reasons, in various seasons.  Inclusion is not an all-or-nothing, now or never principle—it’s an ideal scenario when all the proper factors are in place. 

Yes, there will be times when Marshall cannot participate with his peers, but we try our hardest to include him in as many events as possible, no matter how difficult the preparation and legwork may be.  When I picture planning ahead for an inclusive activity with Marshall, the closest visual that comes to mind is one of those crime shows where the detectives carefully search every corner of a dark building, guns drawn, looking for the enemy behind every corner.  When you have a child with special needs, it is hard work to anticipate what might upset your child, what loud noises could occur, what food may be served, how others may interact with him, what order of events to expect, any special attire to be worn, etc.   Not only do you have to think through each potential factor, but there has to be a plan in place ahead of time—is there a place we could take a break if needed?  How important is this event in the grand scheme of things—how long do we need to stay if he’s upset or uncomfortable? 

One of our first experiences with inclusion was memorable: three-year-old soccer.  We had several friends with kids on the team, we knew it would be low key, and we went into it knowing that the sun would not rise or set on Marshall’s success in preschool soccer.  However, the experience had little to do with physical skills, in our case.  The experience was about being around other kids in a different setting, observing appropriate physical boundaries, wearing clothes he wasn’t used to (shin guards and tall socks), etc. 

The very first practice was a nightmare, and we both questioned our decision to even sign him up.  Marshall spent the entire practice on my lap, crying for most of it.  We agreed to give it one more try—if the second attempt was just as upsetting to him, we would let it go and move on.  We talked to him about it afterwards, and the second time around, Marshall knew what to expect.  He knew it would be loud.  He knew it would be chaotic.  He knew there would be a lot of movement.  And our second attempt was tear free.  Now, granted, that first season he didn’t follow the directions for the drills or stay with his teammates, or even kick the ball much—but he was happy, he was there, and he was soaking in what his peers were doing. 

He continued to “play” soccer a few more seasons, and our goal for him was to stay on the field within the white lines.  It took time, practice, reminders, reinforcements, and a stuffed dinosaur that he carried with him on the field, but he did it.  The blood, sweat and tears that we put into that inclusive experience was well worth it—Marshall spent time with his peers and learned a valuable lesson-- how to observe a physical boundary and not run away in open spaces. 

This past summer was our first summer in a new town.  I signed Marshall up for t-ball not only as an inclusive, active experience with peers, but also as a way to meet people in a new town.  At times, our inclusive model of parenting is not just for Marshall’s benefit; it’s for our own benefit too.  Where else will I meet other parents if I don’t stick my neck out and go where the people are?  I did my usual legwork; I called ahead and asked for details about the structure of the first practice, talked Marshall through as much as I could, and enlisted a dear friend and her daughters to come with me and help wrangle Joey.  It was a lovely experience—that first day my friend’s daughter went out on the field with him and helped him participate while I stood back and watched, and once he learned the routine he was able to stay on the field without any assistance.  I met my very first friend in a new town through t-ball, and we’ve been running buddies every since.  Marshall had a blast drawing in the dirt while his peers waited to field the ball, and even wore the big batting helmet and took his turn at bat each time.  T-ball was a success because my expectations were appropriate (I wasn’t upset that he wasn’t doing all the things his peers were doing) and it was run very well by an energetic and engaged group of young adults. 

More recently, Marshall was invited to a bowling party by a classmate from school.  He had never been bowling, so we went bowling as a family the week before the party as a trial run.  Marshall loved it, and had a reference point for what to expect when he and Wes went to the party.  Truly, that was one of the easier prep jobs—all we had to do ahead of time was go bowling, talk about what to expect, and take an appropriate treat for Marshall to have when the others ate cake.  (Marshall has some dietary restrictions— our choice, not true allergies-- more on that later.)

This is our norm.  Now, if I’m being honest, the easiest thing would be to decline the birthday parties, never sign up for sports, and move on.  Marshall would not be upset, he is unlikely to be a professional athlete, and we could spend our time doing things that would be much easier for everyone involved.  But, for us, the uphill climb of parenting as inclusively as we can means taking every opportunity to allow Marshall to enjoy the same social events as his peers. 

Not all events have gone so smoothly, either—even with all the prep work.  This past winter, we learned that Marshall can tolerate a college basketball game on a Saturday afternoon, at least until half time—but he cannot handle it on a weeknight, having already used all his energy to hold it together through school and any therapy or lessons we may have had.  The formula of preparation is not a guarantee—just an exhausting reality of parenting that is 100% worth it when it works.

In our limited experience with inclusive parenting, I have learned this: it is no one else’s job to include Marshall—the responsibility falls on Wes and I.  Sure, if there are things an organization or coach can do to help us, we will ask for them when it’s appropriate; but the choice to include our kid is the uphill, swim upstream, absolute right choice for us as his parents.  We cannot expect others to know him well enough to invite him and anticipate his needs— it’s up to us to take the invitations we’re given and do everything we can to set him up for success.  It is overwhelming, expensive, exhausting and sometimes unsuccessful, but I firmly believe the road to who Marshall will grow up to be is paved on each of these curves we choose to take.

Broken Fishermen

My favorite running path leads me through town, under a bridge and along the river. It’s quieter, cooler, and calmer than the surface streets— I love the ability to escape to a river just a few miles from my front door.  As much as I dread the idea of long mileage sometimes, it’s always worth it once I hit that stretch of my route, stones crunching under my feet, deer close enough I could pet them. 

This weekend, as I ran that path and caught my first glance of water, I was immediately taken aback by what I saw.  Hundreds, if not thousands of men lined the river, fishing.  Not only were they shoulder to shoulder along the banks, but there were countless others in boats, neatly lined up in rows as far as the eye could see.  It was beautiful—choreographed like a carefully planned dance number.  No visible markers or boundaries, just an unspoken, unwritten code of where each one should stand in order to participate without hindering his neighbor.

I’m going to go ahead and assume that all of these men did not know one another.  I’m going to assume there was not a planning meeting, a sign up sheet or a seating chart, but rather a mutual respect and a shared goal that allowed them to work together, stand shoulder to shoulder, and fish for the same fish without fist fights or arguments, turf wars or tattle tales.  For several miles, I ran past these men—eyes facing the water, quiet, calm, collected, patient. 

The sheer sight of so many neatly organized humans was unreal, but something else hit me even harder.  I was reminded of how Jesus called his first few disciples and told them He was going to make them fishers of men. (Matthew 4)  As my feet crunched past mile after mile of these men, I couldn’t help but wonder what it would look like if we, as followers of Christ, fished like these men.  What if we fished shoulder-to-shoulder?  What if the common goal of sharing the love of Christ organized us neatly, quietly, without pomp and circumstance, red tape and paperwork? 

Maybe you don’t know Jesus yet. Maybe that’s partly on me.  I wonder if you’ll go down this road, too.  Think about the thing that’s most important to you—what if you could work towards that goal shoulder to shoulder with other people, without competition and criticism, comparison or quarrel?  What if we parented this way? Taught this way?  Worked this way? Served this way? 

I’m going to assume that in that group of thousands of men, there were some disagreements.  I bet some disagreed with how their neighbor cast their line (help me here, I’m illiterate when it comes to fishing) or performed another fishing related task.  I’m certain that conflict existed along the banks of the river that day.

But you know what?  As an outsider, an observer, a passerby, conflict was invisible.  It wasn’t what I noticed, what I was in awe of, or what piqued my interest in what was happening. I wasn’t taken aback by the beauty of a disagreement over technique or tactics; I was in awe of the united front. The big picture of what these fishermen were doing together was breathtaking.  It made me want to know more.  It made me stop, take a photo, reflect.

I wonder what it would look like if we behaved this way.  As believers, as teachers, as members of whatever team comes to mind.  I wonder what outsiders, observers, passersby might think.  Jesus said that the world would know believers by their love, (John 13) a truth that humbles me every time I hear it.  Would those around me know I follow Jesus if I never wore a t-shirt with my church’s logo on it, never posted a spiritual quote, never talked directly about the Lord?  Would someone who watched my weekly habits or listened to my conversations or read my texts know that I follow Jesus? He didn’t say that the world would know I follow Him by my attendance record at church, my volunteer resume, or even my financial donations.  He said the world would know I’m a follower by the way I love others. 

I’ve met people who love this way.  I’ve seen it in action, and it’s breathtaking.  The very nature of the gospel is that performance doesn’t pave our path to heaven.  Grace does.  Am I humbling accepting the grace laid in front of me each morning?  Am I walking in it?  Am I extending it to those around me? My missteps don’t disqualify me—thank you, Jesus.  Am I focused on sharing that message of hope? 

As I watched those fishermen stand in quiet respect of one another, I thought of how nit picky I can be.  How critical.  How quickly I speak when silence and self-control might be the best route.  I surely hope that if there’s anyone out there playing clean up crew for the ways I’ve fallen short in the name of Jesus, that they’re doing a bang up job.  But mistakes can’t be the reason I quit; I can’t wait for someone else to share the story I’ve been given to tell.  Time and time again, the Lord has used the nobodies, the mess-ups, the not-good-enoughs, the uneducated and the unexpected to tell His story and bring Him glory.  (Look up Moses, David, Paul to name a few). I serve a God who is willing to use me in my brokenness, if I’m willing.  Let’s line the banks of the river together, friends.  Broken people shoulder to shoulder, casting our lines of hope over a fallen world. 

Building a Village

Shortly after Marshall was diagnosed, I did one of the only logical things I could think to do: I checked out every book from the library on autism.  I read short books and long books and passed on the books that didn’t hold my attention.  I read like I was doing research for a school project -- unemotionally.  I read for content and background and common threads from book to book.  I was building an arsenal of vocabulary, repetitively reading about the same topics from different authors as a way to reinforce the information. 

I’ll never forget a particular chapter that I read along the way.  I wish I could remember the title in order to give appropriate credit to the author, but for the life of me I can’t remember anything about the book.  What I do remember is a chapter that talked about people who “get it.”  Finding the people who “get” your child, and keeping them close.  The author went on to explain that regardless of title, background, education or job description, there will be people in your life who understand your child, and people in your life who don’t.  The author explained that even some therapists with exceptional training might not “get” your child, while a friend or relative without any training or background in autism might be your best resource. 

I remember being surprised that an author of a non-fiction book based on science and research would find it so important to include information like that.  I felt relieved, a little, as we had already experienced some of what the author mentioned there.  I recognized in that moment that Marshall would have a village of people that helped raise him, just like we all do, but that his might look a little different that other kids’.

Marshall’s village is an eclectic one.  We are lucky enough that it includes our families, but not just because they are related to him—our families are part of Marshall’s village because they love him unconditionally and respect our decisions as his parents, even when they may not agree.   They engage with him alongside us, not in opposition to us.  His village is not built on geographic proximity or how often he sees people—Marshall’s village is very simply the people in his life who “get it.”  For that very reason, he is closer with my best friend who lives several states away than he may be with someone he interacts with weekly. 

Marshall’s best friend, Jeddy, is someone he hasn’t seen in nearly a year.  Their friendship was built over time on many a trip to the playground, where Jeddy’s mom, Maria, and I would escape our houses and let the boys loose.  She and I share a love for the outdoors and a desire for our boys to have space to jump and climb and exist with as few restrictions as possible.  We are not fair weather playground attendees, either— we have always found every opportunity possible to bundle up and get outside.  In my experience, there are very few slumps that can’t be shaken by breathing fresh air and talking to an adult.  I dare you to prove me wrong. Find the people who will go to the playground when it’s 40 degrees and muddy, and add them to your village.  They probably belong. 

Maria and Jeddy settled neatly into our village because life with them is just plain easy. We show up just as we are, without a second glance in a mirror or concern over what kind of behavior might emerge.  Marshall has always been comfortable around them, and we’ve ridden that wave into a beautiful friendship that makes my eyes well up and my heart swell with gratitude.  Now that they live a few hours away, Maria and I talk on the phone almost daily and our boys often hijack the conversation to be able to talk to one another.  For me, it’s the stuff of dreams—having a dear friend and sharing that experience with my boys.

Marshall’s village wasn’t built based on an application process or a set of prerequisites—I literally lifted my head, looked around, and noticed who was already there.  Who did he engage with easily?  Who was comfortable around him?  Who wanted to know more out of genuine interest, not polite small talk?  As new people entered our lives, including therapists, teachers, coaches, instructors, etc, it has been really easy to guard my heart by making an internal note—in or out.  Do they get it, or not?  If they don’t, it’s much easier to brush off comments that could otherwise offend or hurt me.  It’s easy to smile and move on—it’s okay.  Marshall doesn’t need a suburban city, just a village.  And I don’t need to take personally the comments of every person I encounter, most of whom mean well and truly want the best for Marshall.  I can save myself and others a lot of hurt by building my own boundaries quietly.  Members of the village may drift in and out—for me, the most important thing is that he has one at all.  My role as his mom is to invest in the people we need as permanent residents in our village. 

Every child needs a village—and I would argue that the need is even more crucial for a child with special needs.  Parents of special needs children can’t do it all—the weight of the journey is a lot to carry, and without scheduled breaks or people to talk to, the child themselves can suffer from their parents’ burn out.  Finding those who delight in your child and keeping them close is a lifeline cast on calm waters in anticipation of what lies ahead.  Don’t wait until you’re desperate to find out who’s in your village—take note in seasons of calm. Childcare can be tricky when your child is different—building a village opens doors of opportunity to breathe a little and have a night out without worrying about every single interaction while you’re away. 

One of the most beautiful examples of the Lord’s provision in our life has been the village He’s given Marshall. We are so lucky to be surrounded by people who love him for who he is, who walk the walk with us and are willing to step in and help when we need it.  Special needs or not—I wonder who’s in your child’s village?  Building a village has immediate benefits for the here and now—the friendships, the playdates, the help when you need a break— but I can’t wait to see how the Lord will use our village in the months, years and decades to come.  Team Marshall, in it for the long haul.

How We Got Here: a Diagnosis

We all need truth tellers in our lives.  People who tell it like it is— the kind of people who will announce that there’s spinach in our teeth without batting an eye.  In order for truth tellers to be useful, they have to know us, love us, and support us.  You can’t have just any old person be a truth teller in your life; they have to prove their worth before they speak.  You have to know you can trust someone before you can hear the truth and receive it from them.

Two such truth tellers in my life, my principal and my school psych, were key players in the beginning of my journey with Marshall.  I was in a meeting with both of them around Marshall’s first birthday, and as we waited for the rest of the people to filter in, they asked me how Marshall was doing.  They asked me if he was talking, and I told them he wasn’t really saying anything yet.  I can’t remember who spoke first, but they both shared that he should be talking by now—was my pediatrician worried? (Nope!) How did I feel everything else was going? (I wasn’t sure?) Did I know about early intervention options? (I didn’t.)

Emily, the school psych, jumped right into what she does best—helping people create an action plan.  She carefully weaved her own experiences with the truth of what my options were. She told me who to call, what to say, and what the process would look like.  Have you ever met someone who seems to somehow knows every living detail about a topic?  That’s my friend Emily.  She is an expert on all things related to student services—what kids need, where they can get it, and who is responsible legally.  She is a gold mine.  She is my gold mine.  I cannot tell you how many times in the last few years I’ve called her about Marshall.  She is an excellent listener, and asks just the right questions to narrow down what a person is looking for.  She has a way of breaking down confusing information for anyone without being condescending or disrespectful.  She has been a key component in so many steps of our journey, and I could not be more thankful.

I took my post it note from that meeting, made the phone calls, and got Marshall started in early intervention. That day was the starting point of the long and winding road to where we are today.  For a year and a half, someone came to our home, answered my questions, gave us resources, and assessed Marshall every so often to see what progress we were making. 

Somewhere along the way, it became clear to me that we needed more answers.  As Marshall approached two and half years old, I wasn’t happy with the progress we had made and felt more and more each day that he was on the spectrum.  I watched a video that showed typical toddlers and how they interacted with toys and people, and toddlers who showed signs of ASD (see link below) and my heart sank.  I knew that was my kid. 

I’ll never forget the morning I called Emily into my room during my planning time and blurted out, “What do you do if you think your kid is autistic?”  I lost it.  I cried. She listened.  We formed a plan.  She assured me that he would still be the same Marshall, diagnosis or not, and that the diagnosis didn’t have to determine the course of his life.  An assessment would give us, at the very least, more specific information about what his strengths and weaknesses were, and what specific therapy would be beneficial to him.  The label didn’t have to stay forever—it could actually be removed if he no longer fit the criteria later in life.  This was huge for me—my biggest fear was giving my kid a potentially inaccurate label at a young age that he couldn’t get out from under.  I think Emily and I both knew that I still wasn’t ready for a diagnosis.  We decided to ask early intervention to do a more in depth assessment of Marshall and to seek out structured occupational therapy as a starting point. 

At age two and half, we parted ways with early intervention and sought out occupational therapy on our own.  Marshall was assessed and assigned a slot with a stranger that would become one of our biggest allies: Miss Emily.  From our very first appointment, I knew we were in the right hands.  Miss Emily would become a truth teller for us, too.  She seemed to understand Marshall right away, and we started a calculated journey of linear intervention for what felt like the first time.  I do not want to speak poorly of early intervention—it is an amazing resource, and it was a great starting point for us. (Not to mention that it’s free!)  Personally, however, I wish we would have sought out specific therapy sooner. 

We started seeing Miss Emily every week, and after a few weeks she shared that she, too, believed that he could be on the spectrum.  It was honestly a breath of fresh air.  I was ready.  We were ready.  I was pregnant with Joey and knew it was time to figure out exactly what was going on and exactly what the best course of action would be.  She warned me that there was typically a pretty long waiting period between being referred to the developmental pediatrician and when the assessment could be scheduled, that we would likely not be seen until January or February.  I made all the calls, filled out the forms, and wouldn’t you know it, we got in in September, when I would be on maternity leave with Joey. 

On September 6, 2016, a date that will always be fresh in my mind, we went as a family to the developmental pediatrician: Wes, Marshall, myself and 4-week-old baby Joey.  We walked in unsure of what to expect, and we walked out with answers. We had a path, a plan, and a checklist, and the next leg of our journey began.  I remember thinking that I should have felt overwhelmed, thinking that I should have been more emotional, and yet all I felt was relief.  I was ready.   

For the first time in my life as a mom, I walked out of that appointment feeling confident about my next steps.  We left with loads of information, plans to contact the school district and look into an IEP, a list of preschool options, and a battery of other specialists to visit to rule out other issues (vision, hearing, etc.). Finally! The path we were on was linear and calculated—or so I thought.  I would soon learn, however, that the path to parenting a child with special needs is full of twists, turns, and forks in the road: decision after decision that slowly etch the path for you and your child.

For us in our journey, Marshall’s diagnosis came at just the right time.  I don’t believe in coincidences-- I truly believe that the Lord carved out that date for us, knowing it was the right time. If we would have had Marshall assessed at age 2, I don’t think I would have been ready.   My brain would have travelled tirelessly down the path of “what ifs.”  What if he would have responded to therapy, and all of this melted away?  What if these were just delays that looked like autism?  It took time to come to grips with our reality, and to decide how we wanted to proceed.  When your pediatrician isn’t worried, it’s hard to feel accurate in your pursuit of more information.  When most of your family and friends aren’t worried, it’s easy to doubt your gut.  Those are all good things, by the way— I wouldn’t have traded our experience or our support system for anything.  The confidence of others that Marshall was okay gave me the freedom to come to terms with who he was at my own pace—I didn’t feel forced or pressured by anyone. 

The entire experience can be best summed up by the exchange between my best friend, Lindy, and I when I told her Marshall was diagnosed.  It’s the only part of that day that makes me emotional when I think about it. 

When I texted her, her response was quick and direct.

“And do you love him any less?”

I smiled, wiped away tears, and replied “of course not.” 

That’s the truth of it all. Giving a name to my child’s struggles didn’t cost us an ounce of his personality, his strengths, his joy, his spirit, or his potential.  Giving a name to his struggles didn’t determine his path or remove any possibilities for him.  In some ways, it opened doors we never expected.

Here’s the video I watched that gave me some clarity— it was created by the Kennedy Krieger Institute

https://www.youtube.com/watch?v=YtvP5A5OHpU

How We Got Here: a Prologue

Marshall’s name is a tribute to a great friend of ours, Aaron Marsh, who I always called Marshall.  (In my twenties, I took great joy in assigning friends nicknames.  I nicknamed my friend Adam, “Scooter,” our freshman year of college, and to this day I refer to him by that name, despite his status as surgeon and father of two.)  Anyway, Marsh was the best.  He was a gritty outdoorsy kind of guy; kind, humble, and never too cool for anyone.  Marsh loved Jesus, music, and the great outdoors, and once lived in a tent for several months instead of paying rent for an apartment.  He was kind, personable, and never far from a smile.  The greatest thing about Marsh was how real and genuine he was, especially in his faith.  He knew what it was to be with Jesus and what it was to live without him, and he lived impassioned about being as close to Him as he could.

Marsh and his wife Ali met and dated the same year that Wes and I began dating.  Marsh and Wes lived in an old house on Derby Street near campus with two other guys, and the early stages of our relationships were parallel—we watched movies together, ate dinners together, froze in the Derby house under blankets together.  The first memories of my relationship with Wes are chiseled in the walls of that rental house—laughter pouring into the late hours with Marsh and Ali, looking through the same case of DVDs we flipped through every night, spending more time choosing a movie than actually watching it.  We played games and made jokes and waged bets.  We lived and breathed March Madness and wagered a dinner at the restaurant of the winner’s choosing, and low and behold Marsh and I were the final contenders.  He beat me, that son of a gun, and reveled in the glory of a free meal at one of his favorite places, Jed’s.   Some memories are vivid and clear and poignant because of their emotional intensity and life changing moments; memories like those from the Derby house era are sweet, comfortable, and warm, like your favorite blanket on a cold day.  I love the ability God has given us to crawl back into our memories when we need to and feel the feelings, visit the friends of seasons past, and marvel at the wonder of the gifts He blessed us with. 

Marsh and Ali got married a few months before we did and lived next door to us in our first apartment together.  It was like we were getting away with something, living so close to our friends; pretending to be grown ups during the day and staying up late at night. It was like a 22 year old slumber party that lasted for months; two couples in their first months of marriage, happy, light, invincible. In a movie, the footage of those months would be montaged together with a peppy song and a vibrant, upbeat feeling.

While those memories are fluid and warm and soft, the kind I love to wrap up and dwell in, there’s another memory that bites my senses. It’s hard and heavy and stuck, like a concrete pillar etched in my mind: the night we found out that Marsh had a brain tumor.  We were in our galley kitchen in our one bedroom apartment, arguing about something, when my flip phone went off and I opened a text message from Ali.  I froze, the argument melted, and I read the text to Wes.  Marsh had a tumor in his brain, likely a benign slow-growing mass that he had had since birth.

The months and years after that moment are blurry and fuzzy and swirled with emotions and tears.  After major surgery to remove the tumor, we found out the worst—the tumor was not benign, but cancerous- late stage aggressive cancer at that.  Our slumber party ended, we sobered up into real grown ups, and our dear friend Marsh fought for his life with his wife Ali by his side.  Throughout the months after that night, I was continually amazed by the strength of Marsh’s resolve, not just to fight the cancer and pray for a miracle, but to boldly follow the path the Lord laid out before him and march ahead with his face held high.  Marsh knew that whether the cancer was healed or his time on earth was called to an end, the battle was already won by the Lord. 

During those times of anguish over our friends’ suffering and our no-longer-parallel lives, I sought the Lord often on behalf of Marsh.  One day, during my quiet time, I read Mark 2, the account of when Jesus healed a man who was paralyzed.  The man’s friends went to great lengths to bring him to Jesus, even making a hole in the roof where Jesus was in order to lower the man into the house.  Mark 2:5 says, “when Jesus saw their faith, he said to the paralytic, ‘Son, your sins are forgiven.’” 

For the first time, in that moment, I was hit with the fact that the best thing the Lord could ever do for us is to forgive our sins.  We are promised pain and troubles in this world, a reality I’ve always hated, and in my young twenty two year old brain I wanted nothing more than for the Lord to use this opportunity to answer my prayers and the prayers of so many others and heal my friend Marsh.  But Marsh already knew what Jesus was talking about in Mark 2.  In fact, when Jesus did decide to heal the man in that passage, he did it “that you many know that the Son of Man has authority on earth to forgive sins…” (Mark 2:10)

Jesus made it very clear that he could heal any of our physical pain, remove any of our anguish at any point, but that it’s nothing compared to His ability to forgive our sins through His own sacrifice.  In that moment, in reading that passage, I made peace with the fact that the Lord might just take our friend from us.  The Lord might just take a young husband from his new wife.  The Lord might remove one of the kindest, happiest, most genuine creatures from the earth—a man He had already forgiven, named, and wrapped in His grace for protection from the greatest opponent we would ever face: sin.  Marsh didn’t need to be saved from his cancer: he needed to be saved from his sin.  And he already was.

In the years to come, I knew we would have kids.  Wes and I always joked that we would have two boys, but in an inexplicable way that can only be the Lord, I knew that to be true.  I knew I wanted my firstborn to be named Marshall, after our dear friend Marsh, not just as a tribute to a friend who we missed dearly, but as a reminder that our life here is temporary, and full of hardship.  I wanted my son to be named after a man who fought through his hardships with his head held high, his eyes towards the Lord, and a smile on his face.

There’s irony in this, if you know my sweet Marshall.  I can’t help but smile whenever I think of Marsh and my Marshall—the similarities are striking.  My Marshall has loved the outdoors from birth, is never far from a smile, and has already endured his share of hardships in his five years on this planet- all while lighting up the world around him with his contagious personality.

The Lord knew who Marsh was, who Marshall is now, and who he will grow up to be.  I’m so thankful for it all—for the years drenched in highs and lows of our friendship with Marsh and for the front row seat we now have, watching the story of our Marshall unfold.