Just Like Always

A couple of weeks ago, sitting at my computer, going through my long list of Christmas to-dos, I felt a knot in my throat and a nagging feeling that something wasn’t right. I blew it off as feeling a little blue that I was by myself after spending the previous evening out with Ike, celebrating the start of us which was 20 years ago on December 29, 1999. We had gone to Harpers Ferry, a place we frequented a lot during our early dating years, and a place that draws us back again and again. I finally felt the Christmas spirit as we walked through the town in the dark holding hands. We smelled wood-burning and heard soft guitar music playing from the local shops that were open late for Olde Tyme Christmas. We bought an old fashioned train whistle for our youngest and then ducked into a restaurant where the waitress sat us right next to a fireplace. And for the first time in a long time, we spent the time together talking about things that weren’t so heavy. It was a departure from our usual banter about medical mysteries, insurance claims, school worries, food challenges, and sleep struggles. We were at ease, and it was a welcome feeling. On the way home, we drove through a few local neighborhoods to look at Christmas lights. It was one of those rare evenings when it didn’t feel like our world was upside down. It brought me back to 1999 when we were 16 and carefree; when we had plans and dreams, and we didn’t know what was coming.


I reflected on our evening and I resigned to making the most of a quiet morning. I felt the warmth of my ratty moccasins on my feet and settled into my chair working at my computer. I asked Alexa to play “A Charlie Brown Christmas” as I deleted emails and checked items off my list. Ike was out shopping with Jillian, and the boys were puttering around the house. All was well.

And then I had that realization that every parent has when you realize your house is too quiet, even with the soft Christmas jazz playing on the speakers. I asked Luke where Mark was and he answered “upstairs”. Mark often retreats to his room to gather and look at family photos. I climbed the stairs and could smell the smell. Mark had an accident and this was not foreign to us. Pooping on the potty has been mostly elusive since we made the switch to underwear over a year ago. As I turned the corner into his bedroom and peeked inside his bed, I found him under a pile of blankets and his pillow. He was curled up, with something all over his face. I feared that he had vomited. And then as I got closer, I realized that it was poop. My heart sunk. I pulled him up from beneath the covers, not an easy feat with an enclosed medical bed; straight to the bathroom to do damage control. The poop was loose, as it often is. I struggled to get the underwear down his legs without leaving long streaks down his calves. I pulled his ankles over the underwear, cursing under my breath as the mess smeared over his ankle locator. I realize how disgusting this all is as I type this out, but truthfully I am numb to the yuck. And as if to mock me, I hear his potty watch go off to the little mechanical tune of “London Bridges Falling Down” and Luke shouts up the stairs, “it’s potty time!”. 


In defeat, I fill the tub with warm, soapy water and hoast him in as I proceed to scrub his face and fingernails. I then leave the two-year-old in charge of my bathing subject and sprint to my bathroom to get the nail clippers. Mark hates nothing more in this world than having his fingernails clipped but I had to get the poop gone. As he cried and I wrestled, I clipped his thumbnails which seemed to have the worst of it. Meanwhile Luke decides that it would be fun to take the soiled washcloth to wipe his own face. Horrified, I grabbed it from him and chucked it across the tub out of his reach. He then retreated in retaliation to play with the toilet cleaning wand. Feeling overwhelmed and outnumbered I quickly finished the bath and pulled Mark out of the tub. I dried him off and shuffled him to his room to redress. He was happy, giggling and completely unaware of how horrifying it was to find him in his bed that way.

As I bagged up his soiled underwear and removed the dirty bathmat, I dropped it all into a heap in the hallway and felt my chest cave. My eyes burned with hot tears as the knot in my throat that began as foreshadowing gave way to deep cries. I began to sob as the sounds of “Christmas Time is Here” softly echoed throughout the house. The smell of the mess filled my sinuses and refused to leave no matter how many times I washed my hands. In these moments the trauma floods in and my senses are heightened. It’s like a twisted mindfulness exercise. I am brutally and painfully aware of my surroundings. I can see, smell, taste and hear everything amplified. Feelings of “I can’t do this” overpowered me. He’s six and a half and he’s not bothered by having an accident and seems to even relish in it. He’s unaware of how awful it is to touch and taste his own feces. As I angrily clawed at the sheets on his bed, struggling to get the final corner released, I thought about how this won’t be the last time. I will do this again. And again.


At that moment, I needed to tell someone. I needed to talk about how hard this was and is; how challenging it is to live in this world where things seem to be ok, and then suddenly they are very much not. Just how much of a departure this is from normal.  


I wanted to call or text Ike to tell him, but I didn’t want to break his heart. I didn’t want him to feel the all too familiar defeat and the dark feeling that creeps in when you imagine what this will look like as Mark ages and grows larger. And ultimately what it means for his ability to live independently.

Ike was out enjoying a daddy-daughter date. He had left our dysfunctional bubble and I didn’t want to drag him back in. As I sat and typed this out, he sent me a photo of himself trying on a suit with Jillian peering around him in the mirror. No, I didn’t want to ruin his time.


I don’t how to explain to anyone how hard this is but Ike knows. This journey of ours has changed both of us in good ways and bad. There’s no way to come out of this unscathed. He’s more serious, and so am I. And yet the previous night was a reminder that we are, at our core, still the same two people we were 20 years ago. 


When Ike returned home, I told him what happened, he hugged me, completely understanding how hard it is to weather these little storms alone. And he scooped Mark up into his arms, told him how much he loved him and then helped me put clean sheets on Mark’s bed. He does all these things with a sense of duty and with a servant’s heart.

When I’m feeling defeated, Ike will say “he’s ok, Mommy”. He reminds me of how far we’ve come with toileting, and that Mark is improving. He tells me that he will expand his accepted foods again, and the food restricting is a phase. And that the sleepless, screaming jags are temporary. And he will reassure me that we can, in fact, do this.

And he’ll continue to walk with me in the dark, holding my hand, just like always. 

An Open Letter to the Under Appreciated Special Educator

To the Under Appreciated Special Educator:

You have a really hard job. Harder than most people realize or understand. 50% of your special education colleagues will leave before their fifth year of teaching. Your job is not a job, it’s a calling. One that results in high turnover and burnout. This job is not for everyone and the select few who are called have a tremendous responsibility. You are tasked with leveling the playing field for students whose decks are stacked against them. And your job is getting harder as the demands on you increase, and funding and support decreases. Teaching can be a thankless job, and even more so when your students have extra layers of challenges. You love on your students like they are your own and are rarely recognized for your efforts, but I see you.

 

I see you get to know each of your students and understand how they operate and what makes them tick.

 

I see you researching and pinning things on Pinterest that you aspire to do in your classroom.

 

I see you spend your own money to outfit your classroom with sensory items, books, and toys that are on the developmental level that your students need.

 

I see you complete all of the legal aspects of your job, maintain compliance with state and federal guidelines, and handle ALL of the paperwork.

 

I see you keep track of all of the goals and objectives on each of your student’s IEPs, compiling the data that you need to be able to complete their progress reports and report cards.

 

I see you juggling multiple IEP meetings in one day while struggling to have your class covered in your absence.

 

I see you stuck in the middle between what administration wants, budget constraints and what you know the student needs.

I see you handle parents, those that are overly demanding and those who are unresponsive. And despite their different levels of involvement, you recognize their importance to their child’s education.

 

I see you when you are sick and struggle to get a substitute teacher for your room because just like teachers, subs are hard to come by, especially those trained to work with students with disabilities.

 

I see you skip lunch and your planning periods because your students need you.

 

I see you get creative with materials you’re given or have purchased even if things are destroyed.

 

I see you dodging spit, kicks, meltdowns, flared tempers and behaviors while still trying to maintain safety and meet the needs of all of the other students in your class.

 

I see you love the hard to love students.

 

I see you recognize when a student is having an off day and employ methods to address it or perhaps not push as hard that particular day.

 

I see you take on a parent role during the day because you know at a certain moment your student needs a mom/dad versus a teacher.

 

I see you beam with pride when one of your students finally reaches a goal, no matter how big or small.

 

I see you try to come home to your family but struggle because you gave absolutely everything to someone else’s kids all day.

 

And I see you pick yourself up again and again, and return to your classroom despite the adversity and lack of support.

 

I write all of this because I am a parent of one of your students. A grateful one at that. I want you to keep going; to keep fighting the fight, because it’s always a fight. For services, for funding, for inclusion, equity, and for respect. Please keep fighting, because I need you by my side. I don’t have the option of quitting this gig, and I need a powerful advocate like you in my child’s corner.

 

Sincerely,

 

An eternally grateful parent of a special education student

Home

A few weeks ago I stood with my hands gripping either side of my kitchen island as I sobbed. One of those ugly cries where your mouth hangs open without sound as your body shakes. It was 7pm on a week night and my family was scattered throughout the house going about their comfortable nightly routines, the boy’s playing, one on the floor with cars and the other fixated on the iPad, Jillian upstairs in her room engrossed in Lego tinkering and Ike researching something on the computer as he listened to music that echoed around me. And there I stood in a brightly lit kitchen and I was reeling over the uncertainty of Mark’s future and what it will look like when I’m gone from this earth.

That morning I had met with my retirement rep. I was supposed to come to the meeting prepared with my other investments, savings account information, assets, etc. As I entered the room empty handed it was as if I had entered a confessional. Sheepishly I explained that I had virtually no savings because our sons medical bills and cost of care had made that impossible. And with that, my story came tumbling out. The diagnosis, the level of care required and the reality that he will likely live with us until we are no longer here. As we talked, I realized that in just over eleven years he would be legally an adult, but I knew, developmentally more likely a child. Eleven years. Nine years ago I was pregnant with my first baby. That time flew in a blink. And this next stretch will too. I left the meeting and returned to my office with a heavy feeling in my chest and I couldn’t quite catch my breath.

Then that afternoon, I attended a meeting at a local facility that is designed for adults who have intellectual and developmental disabilities. We were there to talk about a new unit being moved to this location that would house clients with criminal backgrounds who are deemed unfit to stand trial due to their intellectual functioning and capability. There are concerns that the residents of this center will pose a threat to the school located near the property that has many medically complex students who also have intellectual and developmental disabilities. It was shared that a resident of the center was spotted escaping and heading toward the schools property with regularity. Repeatedly he’s headed toward the school and it has given parents cause for concern, rightfully so. Then an administrator seated to my right explained that this particular resident is drawn toward the school busses because he thinks that’s how he’ll get home.

Where will home be for my sweet boy, who will likely remain a boy his whole life?

Will he become a burden to his siblings?

Will their spouses not accept him living in their home?

Will someone else fight for him like I do?

Will someone make him feel loved in the ways he understands?

Will someone hold his hand and keep him safe?

Will he be misunderstood by law enforcement?

Will he run after a bus?

Hearing about this man and his longing to go home wrecked me.

Ike and I often talk about growing old together just the three of us. It’s sweet, idyllic and endearing to think of my husband looking into the future lovingly when many people would feel the enormity of the realization that they will never be empty nesters.

When people say, they’ll be grown and gone before you know it, we know these empty pearls of wisdom have no place in our family. Our job caring for our son will be done when we are.

Together we dream of owning a small farm to give Mark and others like him a safe, protected and loving space to work and feel the gratification of contributing to society. But in reality, as I mentioned earlier we don’t have funds lying around and we know nothing about farming. I tried to grow sweet potatoes this summer and what I dug up last week looks like something out of a Tim Burton movie. I work in higher education, and Ike in insurance. We are the least likely to make something like this a reality, but I keep the flames of this dream lit with the fire of knowing that my son will need a space to contribute in and be loved.

As I’ve said before, this world was not made for him, or others like him. We, as special needs parents, spend an enormous amount of mental and physical energy trying desperately to change it.

Ike and I stand at microphones looking at politicians with blank stares as we beg for more funding for schools, for better special education, for them to understand that we are desperate and determined to change the current landscape. We educate, raise awareness and share our experience with the hope that we can shape this world.

In all reality it feels like we are both pushing a large boulder up a hill with our backs as our heels dig into the dirt. But the beautiful thing about this is that we don’t feel sad about our circumstance, terrifying as it may be, we both have grown to accept our trajectory. It overwhelms me sometimes when I remember that I’m not immortal but it also fuels me to use my time on this earth wisely for Mighty and others, like the gentlemen trying to go home.

Understood

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For the longest time, and still now, I have the same disturbing thought. When I see someone with a brand new baby, and I can see the love that is expressed beyond words, the care, devotion and the worry that only a parent knows, I want them to feel what it feels like to have their child diagnosed.

I want them to understand that there is a very clear before and after a diagnosis, because you are never, ever the same.

I want them to feel the coldness that is a waiting room in a doctors office on diagnosis day. The vacant looks from the front office staff as they check in their child on a day that they will never forget.

I want them to look at their precious, perfect child and I want them to feel the weight and the heaviness that exists in the space where they have to say goodbye to the future they imagined.

I want them to be faced with the waves of grief as they crash over and over, often in the most unexpected places, and for the most unsuspecting reasons.

I want them to feel the painful sting of watching other children play functionally around theirs, knowing that they are reaching their milestones and their child is years behind.

I want them to understand the anger that comes with being in this helpless space as they acquire diagnosis after diagnosis. Because it’s not just one. And with each diagnosis, comes a specialist, and a litany of appointments and a number of expenses.

I want them to know what it’s like to lay next to their child as they cry, in a ball with their eyes squeezed shut, unable to communicate what they are feeling.

I want them to know what it’s like to have mountains of paperwork and dozens of meetings, and hours of worry, just to be able to advocate for a level playing field at school, which in the end never ends up being all that level.

I want them to know the depth of anxiety when they realize that their child’s personal safety relies squarely on their shoulders and vigilance, most likely for the remainder of their life. There are no breaks. No moments to let out the collective breath they sucked in when they walked into that doctors office and were handed a diagnosis.

And for the longest time I wrestled with why I felt these seemingly sadistic feelings, and then this morning, I realized it’s because I see things completely differently now, and wish others understood just how I do.

I want others who are not chosen for this path to recognize the depths to which parents like us are impacted. Our son was diagnosed almost five years ago and our wounds are very much a part of the fabric of who we are.

I want others to understand the daily weight of the uncertainty. None of us are guaranteed a long life but when we were told there was no prognosis because our child’s mutation is rare, and there are children who have died with the same condition, we are painfully aware of this lack of guarantee.

I want people to understand that we are different people and forever changed, in good ways and bad. We’ve slowly been molded, shaped and changed into these new creations that allow us to be resilient and yet fragile. Though we bounce back, it still hurts each time we get a new diagnosis, each new progress report and each moment when grief taps us on the shoulder and reminds us of just where we’re at and where we’re not.

I also want others to understand that this special life of ours isn’t devoid of joy at all, in fact, it’s rich with faith, love and community, and it’s fueled me as a person giving me new purpose, vigor and determination.

I share the hard parts not to isolate out the good but to expose the painful side in order for others to get a sense of what we experience, because that is when empathy replaces sympathy and our love for one another can grow.

So when I look at you gazing at your baby, I don’t wish you or your child ill. I want you and everyone else to know that there are many of us deeply impacted by our child’s diagnosis who now see our world through a completely different lens. And maybe, just maybe, if you understood how we are forever changed, this special world of ours wouldn’t feel so foreign.

Six Suits You

What began as a short birthday shout out has turned into a blog post, a mighty celebration for our Mark.

Six years ago our world changed, we became a family of four and welcomed our sweet Mighty into the mix. At the time we were living with my parents, building our house and consumed by what we thought laid before us.

Pretty quickly within that first year, it happened. The milestones weren’t met, the fear crept in and we could see it coming. We faced that same dark period that parents find themselves when their child is diagnosed, and turned down an even darker path when our child acquired a rare disease diagnosis, with associated words like “no prognosis”, “severe intellectual disability” and “potentially shortened lifespan”. Our life we thought we were building seemed gone. No longer was our toughest choice between wall colors or hardwood stains.

Mark turned one, and like Leo the Lion in one of our favorite books, “he still wasn’t blooming”, then two came and just after his birthday we whisked him off to California for brain treatments in hopes that we could taste the victory demonstrated in the companies promotional videos filled with eye contact, words and hugs. My sweet boy returned the same as he had gone.

Then three and four passed with growth from the planted seeds of massive amounts of therapy, and during his fourth year his words came to life.

Then five arrived, and suddenly we felt nervous again. Five was big. Real school was scary and there was so much he still couldn’t do. But he showed us in that year that he knew his letters, numbers, their sounds and some sight words. He reached goals we never thought he would, and little by little he made progress. Music ignited his fire for learning and he began to blossom.

And now here we are. I put a giggly five year old to bed last night and was greeted with an older boy this morning, who arranged dry erasers along the covers of my bed, and snuck glances out of his periphery as I woke up and wished him a happy birthday.

It’s hard to sum up the years in a sentence or two, I left out some hardships and milestones, like a bee attack, broken arms and learning to talk, but if I had to say where we are, we have arrived in a place where we are beginning to get to know Mark.

He loves musicals, delighting in his most recent love, Mamma Mia! He has a small sprinkling of freckles across the bridge of his nose and under his eyes; a small trademark of mine that matches his sister’s. He needs a drink before he can eat. He adores the book Dear Zoo, and watches my face for my reaction as he fills in the ends of each line, anxiously awaiting my praise. He moans when he’s happy, and does the same when he’s nervous. And he checks each person’s badge when a new person arrives in his classroom and curiously peaks at their face as if to verify their ID.

He’s easily heart broken, particularly when a favorite TV character is faced with some calamity, or one of his siblings is hurt. And it’s hard to recover. He feels the feels deeply.

He has a lisp, just like his sister. And we’re thankful we’ve been given the gift of his voice. He still loves the Lumineers but his musical tastes are expanding and we’ve added ABBA to his list of favorites.

All of those things may have been there before but they were hard to see through the sea of therapy, insurance fights, school challenges, and battles within ourselves as we embraced the life we never imagined.

So as I’ve unpacked a little, moved a smidge past the grief, and as I’ve picked my head up, I’ve begun to admire the view. Welcome six year old Mighty, we are so glad you are here.

Anatomy of a Storm

I posted a school photo of Mark on Facebook and Instagram, extremely happy with how beautifully my precious boy was captured, dimple and all. He smiled with his entire being and it showed.

And moments after I posted the photo, the thunder and lightening started, and the storm began.

Mark had his iPad and he was perseverating over a game that asked him to pick what his bed looked like. Mark sleeps in an enclosed bed with tall walls which keep him safe, and free from escape, and of course the game did not have an option like that. I can’t communicate that to him, as much I tried. And he lost it.

So we did what we normally do.

The script unfolded like this.

Quick, hide the iPad.

Alexa, play Lumineers.

Alexa, turn up the volume.

Mark, do you want sticks? Long pause.

Pretzels? Long pause.

What about cookies? Shorter pause.

Crying is intensifying.

Oh look, Mark! Your favorite street signs. I precariously present each one as if they were precious gems.

Not impressed.

We teeter down the stairs as I try to encourage him to independently walk while also supporting most of his weight persuading him down to the basement.

How about a ride in your swing? His arms methodically pump at his sides filled with nervous, anxious energy. Face red, teeth gritted.

I’m not getting it. I don’t know what will fix my sweet, incredibly frustrated boy. Anxious I can’t think straight. I just want it to stop.

I put his rigid arms into each of the sleeves of his jacket.

Mark, let’s run in the yard! I coax him outside and encourage him to take off and breathe some fresh air.

He takes a few steps onto the patio, and freezes, then begins aimlessly running.

What about your favorite You Tube video? A is for Apple, Ahh Ahh Apple. B is for… I run toward him, arm extended. Can you hear it? Do you need the volume higher? Why can’t phones be louder?!

I chase after him. He heads for the front door. It’s locked. He pounds his little fists against the door in defeat.

I sprint to the back door and shout for Ike to run upstairs and unlock the door for him.

Ike heads upstairs. It takes too long. Mark runs again away from the house.

The sobs are louder. I watch as he sprints across the property running his fingers along the mesh wire on the inside of the split rails of our fence. I’m thankful for the fence. Really thankful.

I watch Luke watch Mark, and wonder if this will always be normal to him. Watching his brother unravel while the family tries to problem solve and unsuccessfully intervene.

Mark’s crying is louder and harder. He hurts. I hurt. I sink into that dark place. The place where helplessness has a new meaning.

Jillian feels it too. She sprints out to escort him back inside, speaking softly and sweetly to him as she holds his arm, guiding him back to the house.

Ok, Mark. I tell him, I’m sorry, outside wasn’t it.

Back in the house, past the toys I had hoped would entice him, and up the stairs to where the storm began.

How about Word World?

Ike kicks off his shoes, scoops up his boy, and tightly cradles him in his arms under a blanket on the couch. He calmly holds him as Mark continues to cry. But with each moment like this on the couch, his show playing, and the rest of us just sitting in the living room, watching and waiting, Mark’s breathing slows, the tears dry, and the storm surge recedes.

Exhausted and depleted, I slump in the recliner as I watch him eventually hop down and begin to play with his prized possessions, the wooden letters that make up his name.

And the rest of the evening was normal. The meltdown was over, and the seas were quiet, just like they were before storm began. His dimple on his cheek beaming, as he peacefully plays with his letters. It was as if nothing had happened. Absolutely nothing.

The storms have no warning. No forecast and no explanation. They are a product of limited communication, a low frustration threshold and an inability to regulate the central nervous system.

It feels like they last for hours, but really it’s probably minutes. They feel intense because they are, but they don’t define him. Or us. They are what they are, and we try our best to weather them with him.

Between them, we talk about how we could have navigated something more successfully, how we can avoid one in the future and what clues we might have missed. We think, we ponder, and we pray. And we try not to think about what this may look like years and many more pounds from now.

But in this moment, right now, we know that loving Mark during a storm is desperate, painful and yet such an incredibly beautiful honor, for all of us.

Somewhere Only We Go

Today when I picked Jillian up from the bus stop I overheard one of her friends excitedly talking about the pencil that she had received at school, and then she asked her mom if she could sharpen it. I then watched as another little boy headed inside asking for his iPad. I watched so closely because they are both Mark’s age.

Over the holiday break we had friends over who have a little girl that is five. She came to play with Jillian even though she is in kindergarten, just like Mark. She brought Jillian a lotion and an ornament she made for her. I looked at the label and noticed the small scribbled handwritten “lavender” placed on a crooked label. They quickly retreated to Jillian’s room for hours putting together a new Lego set. I watched and listened intently as she talked to Jillian, always imagining.

You’d think that by having an older, neurotypical child I wouldn’t be so captivated by what five year olds are into, but I am. I want to understand and feel the weight of what we’re missing. I want to face the full magnitude of the developmental delay. I want to look into the mouth of the monster, and so I watch, and sometimes I ask my friends what their kids are into or what they’re doing. I like to torture myself, and I’m not totally sure why.

But this afternoon, in a different torturous way, I decided to go to that forbidden place that special needs parent sometimes venture. We know it will be painful when we reenter reality but we go anyway. We go to feel that relief, be it fake, that we feel when we imagine our child without the grip of autism.

I started to think about what it would be like to be able to pick Mark up from the same bus stop with his sister. I imagined him racing Jillian to the car to see who could get to me the fastest. Would they get into the car fighting? Would they be competing for my attention? Would he be asking to play games on an iPad? Would he want me to sharpen a new pencil? What toys would he want to talk to me about? Would it be Pokemon? Would he want to make slime? When we got home, would I fuss at him about leaving his shoes and backpack in the entry way?

He would surely use the bathroom by himself. He would get a snack from the pantry, even if I had to open a package. He would find the remote and turn the TV on without help.

The forbidden thoughts give me a small jolt of excitement about the possibility that things could be different and then it’s followed by the remembrance of our sobering reality and truth that our circumstances remain.

As I drove Jillian home, and she was quiet in the backseat, I continued my autismless fantasy. I imagined Mark eventually retreating to his room with an iPad. And I imagined myself following him, and then cuddling in his bed, attempting to tickle out information about his day. I would soak him up in all of his expressive goodness. But then I stopped, and I thought, but would I? Would I do what I think I would? Would I savor every word he spoke if he was never touched by autism? If we didn’t have to fight for every syllable and utterance? Would it even occur to me to look at the miracle that is normal cognitive function?

And so I began to think about how other families without autism look at their children. Do they celebrate every word their child speaks? Do they love them with this fierce, protective love like I do? Does parenting a child with autism make us love deeper and harder? Does it make us savor the things that most wouldn’t give a second thought?

The one thing I do know is that when I really look at Mark, it makes me go to this place where my eyes fill with tears and my heart feels like it’s going to burst. I watch him as he peacefully, and silently, flips the pages of his new Lego Architect book. I watch him as he carefully places his new traffic signs in precarious positions. With the same intense curiosity that I feel when I watch other children without autism, I observe and pay attention to the details of him. I watch his hands carefully hover over each page as he anxiously anticipates flipping the next. I watch as he rolls his tongue from one side of his mouth to the other, deep in thought and focused on the objects he is manipulating. He has a purposeful gracefulness that mixes with nervous energy and it just captivates me.

So as much as I hate autism, and consider it a nightmare realized, perhaps I should be thankful for the gift of loving someone with such deep, raw adoration, and for being able to see children with an intense curiosity that makes me love mine even more.

We Pretend

I did what a lot of people did this week. I shared our highlight reel on Facebook. The smiling photos of each of my children enjoying Christmas but in reality we are happy to be moving on and away from a holiday whose traditions punctuate the masterful act of pretending that we find ourselves performing time and time again.

I was standing in the dining room on Christmas Eve folding a load of laundry while everyone in the house was occupied in other rooms. Enjoying the quiet I happily folded pants and socks until I realized that Mark was on the same floor with me and it was eerily quiet. I walked into the living room to find him crouched between the chair and the fireplace staring off into space. I knelt down next to him and just stared at him for awhile. I waved my hand in front of his face and he looked at me for a second, and then went back to staring. I talked to him, tickled him and tried to get him to turn back into my happy, giggly boy, and instead he continued to look away while he slowly picked at his foot. I thought for a moment about how if I caught Jillian sitting in the room without a TV show on, just staring blankly, how concerned I would be. But for Mark, this is normal. And this adds to the pretending. We act as if this is what is expected of a five year old, and deep down we know it’s not. With the weight of that thought I began to cry. I cried because I couldn’t keep it together; the act of ignoring the obvious became just too heavy. So I scooped him up in my arms and whispered in his ear, “one day, when we’re in heaven together, will you look into my eyes, and will you give me a big hug?” No response. I then asked him if he wanted to watch Daniel Tiger, and his eye brows lifted slightly so I put on the same DVD that we have been playing repeatedly and he got up and began sifting through a pile of alphabet letters.

Later that evening he had a meltdown. And as usual we really don’t know what set him off. We make guesses but whatever we come up with doesn’t usually give us much insight into how to help him through it. So I did the only thing I could think of, I played Lumineers and turned on the slideshow feature of my photos folder on my laptop, and displayed family photos for him to watch as he listened to Ophelia. He curled up in a chair and slowly the tears dried up and the calm came. But in the process I know that it made the evening hard because my whole family had to collectively pretend that what was happening wasn’t incredibly stressful and sad. If autism didn’t have its grip on our boy, he would be in five year old glory anxiously awaiting his presents and asking Alexa where Santa was in his journey. He would be fighting with Jillian over who could find the Christmas pickle first on Christmas morning. And he wouldn’t be slumped over in a chair watching family photos go by on the screen from 2017.

Christmas morning wasn’t much different. As we began to unwrap presents, Mark retreated to the back of the playroom and surrounded himself with his toys, and sat with his back to us as he flipped through familiar books. We knew that Mark’s pile of presents would be opened last and we would be doing the opening. We knew that the mess would stress him out and it did. And we knew that he would have very little interest in participating.

We did manage to give him presents that brought that unadulterated joy and excitement that we all hope for, even though it wouldn’t be something anyone would generally buy for a five year old, like a book about castles, a new version of his ratty Fisher Price puppy and a musical trolley hand picked by his sister. Surrounded by the objects of his affection he beamed. And just that moment of his bliss made my morning. I hovered over that photo on my phone of him happily clutching his prized possessions and felt a sense of accomplishment that we had achieved some level of joy for him.

And then I watched as he began to line his toys, along the couch, on the ottoman, in a basket and on the table. He carefully positioned them equidistant to each other, and then crouched into different positions to study the angles of his creations. He was happy, there was light in his eyes and he was at home. And even though I knew he shouldn’t be lining, and he should be playing more appropriately with toys, I basked in his happiness because I knew that it might disappear rapidly for no apparent reason.

The days that followed the holiday were filled with cleaning, constant decluttering, cursing at the WiFi when the signal would weaken and drop Mark’s show, hiding toys that would cause unexplainable tantrums, and feeling defeated each time we would discover that he had an accident despite our best efforts to stick to the potty schedule.

People have asked me this week how our Christmas was, and I give a socially digestible answer but really it was hard and exhausting, because it’s always so with holidays. Each year they are a bright, glaring reminder of where we are, where we’re not and what we are pretending to be.

The Monster

Last Sunday at church Luke was sitting on the floor in front of me playing with the various bulletins that he had collected, and he noticed a small purple stain on the carpet and began pawing at it as if he was trying to pick it up, and of course it didn’t budge. Persistent, he continued scratching at it for a little bit longer than I would have liked. Ike noticed and laughed saying it looked like a cat scratching in a litter box, but I wasn’t laughing. We are in the danger zone; that place where children with autism occupy sometimes seemingly normally and then boom, they’re gone. Luke is 16 months old and I know too many families who have watched their children unravel at this age. This was when Mark was spinning in circles, not talking, not engaging, obsessed with corners and doors. We were about to get Mark’s diagnosis at this age. I will never forget that grief stricken, sick feeling knowing what was coming. So as I watched Luke incessantly paw at the floor, I just prayed that this would not be a stim. The next few days I noticed that he was shaking his head back and forth. I know that head shake all too well. Toward the end of the week it became obvious that he had a cold. “He’s just shaking his head because of the fluid he feels”, I tell myself.

And then I wonder. Will this be one of the many little lies I have to explain away the behaviors that begin to emerge? Many times I have asked my mom “he’s OK, right?” And each time she assures me that Luke is different than Mark. He’s engaged, and responding to us. I breathe a little, but the worry still sits across my forehead. It was my mom who called it. She knew early on, and was very worried. I knew when she knew, but I wasn’t ready to face it. She was concerned when Mark would stare at ceiling fans for hours. He slept a lot. He didn’t look at our faces. All the things. She saw it all, and would gently share her concerns with me. And to push back I would tell myself and her these little one liners. I would say “boys develop slower than girls”, “I can’t compare him to Jillian” and “all kids are different”. The same things that the pediatrician kept telling me. So is that what I’m doing now, explaining away the warning signs?

When we decided that we would try for another baby our genetic counselor told us that the chances of having another child with a SCN2A mutation were 1%. Feeling confident with those odds, and thinking that lightening wouldn’t strike twice, we decided to grow our family. And six months later when we found out that we were pregnant, I felt sick, and not because of first trimester nausea. What if this baby had autism too? I know families with multiple children with autism. They do it. I can do it too. I have all of the resources. I know how to do this. We would get genetic testing right away. We would start speech, OT and PT when this baby was super tiny. I would take them to the chiropractor. No gluten, no dairy, no soy. I would get the insurance squared away sooner. I would do it better this time. We would catch it so early. The monster that I battle wouldn’t get one over on me. No, not this time. This time I was in control.

But then I would think, no I can’t. I can’t do this again. I can’t watch my baby miss milestone, after milestone, and see his peers bypass him. I can’t tell him to wave “bye bye” and watch as he blankly stares ahead motionless. Or tell him I love him, and not hear it back. I couldn’t have another person in my house that feels like a stranger. I can’t bear to deal with more detective work; trying to determine how he feels, or what he really wants during a meltdown. This one had to say mama. This one had to give hugs. My heart couldn’t take it again. So I prayed. And I worried. And I watched.

I did take him to the chiropractor, as well as Mark’s OT. We did tummy time like it was our job. I was all over the hearing loss. We did the ear tube surgery. I was on it and terrified. I downloaded an app called Kinedu that gives ideas for play and allows me to take developmental assessments on all areas of functioning to assess Luke’s cognitive, linguistic, social, physical and fine motor development. I would hide a hidden object to see if he searched for it. Check! I would make a motion with my hands and get him to imitate it. Check! Each month he was where he was supposed to be. And a little after a year, speech began to emerge, and it’s still coming along. Every time he holds up a banana to me and proudly says “nana!”, I can feel my shoulders relax a little, but then I see him hold his arms behind his back for a second too long, or make a facial grimace, and I wonder if I should video tape it.

I suppose I’m experiencing the reverberations of the trauma that we felt, and continue to feel as we walk through this journey with Mark. Those feelings of grief have eased over time, but they are still there and they appear when I least expect them to, and they do rob me of enjoying the wonderment of this phase with Luke.  I do celebrate each milestone with vigor, but I would be lying if I said that I didn’t also feel the tremendous relief mixed with sadness when I see him do things that Mark still struggles to do.

One day, I pray, Luke will bypass Mark’s stage of development. And maybe I will stop fearing the monster that took my first little boy, and let go of the worry that it will come back and snatch this one too.

Anti-Funk List – Vol. 1

I don’t like December. Or the three months that follow. I do love Christmas but the holidays remind me of how different we are, and sometimes that’s a drag. Quite frankly, I hate just about everything that has to do with winter. I even hate fall, because it means that winter is coming.  I have tried to look at all of the dead trees around me and convince myself that they’re pretty. I’ve heard how others like to get cozy, read and covet the time indoors as an opportunity for reflection and rest.  I have made several attempts to adopt this mindset.  Yet, when I think about winter, I recall snowstorms coupled with stomach bugs.

I have a photo therapy light, and might get another to keep at work. I take large amounts of Vitamin D, and I celebrate Groundhog Day because to me it signifies the beginning of the end of the age of darkness. Whether its the short days, the dry heat induced eczema, the coldness limiting the options for activities, or the lack of decent produce, I become a seasonally depressed Eeyore. I miss my flip flops, riding with the windows down and daylight past 5 pm. Our life can be limiting enough with the few places Mark can tolerate in public, that when our time at home is confined to the indoors our house can feel more like a prison.

So, in an effort to not spiral into a total funk, which I’m often right on the jagged edge of, I thought I would try something a little different. In the same vein of a gratitude challenge, I’ve been trying to keep a running list of little things that brighten my day. I scoff at articles about self care, but they’re obviously written for a reason. So today, I bring you, the things that I like a lot, and may count as self care, just maybe.

P O D C A S T S

1. Podcasts. If you have ever spent any amount of time with me, I probably tried to get you hooked on one. A friend from work refers to me as his podcast dealer. Be it crime, storytelling, faith, science or autism, I have an incredibly long list of people and stories I follow. My obsession with them started when I was driving Mark an hour and half away for preschool, and Serial was at the height of popularity. It continued when I realized I could escape my own thoughts and worries by putting in my ear buds.

Here’s what has my attention right now…

Someone Knows Something

Someone Knows Something. I’ve listened to a lot of crime podcasts. A lot. And this one is my all time favorite. I just love the host, David Ridgen. Listening to him makes me want to move to Canada. He is the kindest soul dedicated to justice for family members left wondering what happened to their loved ones. From his social justice piece that brought him to Mississippi to reopen a KKK case, to determining the whereabouts of a little boy lost 40 years ago, to several unsolved murders and disappearances, his kind, earnest attempts to connect with all involved parties leave me completely hooked on anything that David puts together. Even my aforementioned co worker went all fan girl and emailed him directly, and to his delight David replied, because he’s that awesome.

The Moth – True stories told in front of a live audience. Some will make you laugh, others will make you cry, and some will stick with you for a long time. I love how at the end of the show they wish you a story worthy week. To tell a story on a moth stage is a life goal of mine.

Happy Hour with Jamie Ivey

Happy Hour with Jamie Ivey – A weekly podcast featuring interviews, with mostly women, focused on topics like marriage, parenting, grief, faith and loss. I know I’m late to the party on this one but it’s become a favorite. I really like Jamie’s style, and as cheesy as it sounds, it feels like you’re hanging out with a friend.

Wellness Mama Podcast

Wellness Mama Podcast – Health and wellness podcast on all the latest trends, gadgets, foods, supplements and lifestyles in the health world. She drops episodes constantly. I’ve learned about nutritional genetic testing, tons about the microbiome, ways to support pregnancy and nursing, and how to make Elderberry syrup and my own magnesium spray!

The Struggle Well Project – A weekly podcast with guests who focus on how they are struggling well and not running away from home. They include many pearls of wisdom, and ways to point back to Jesus.  Emily’s segments that feature her sister make me giggle snort and give me the desire to start a podcast with my sister. What do you think, Paige? I listen as soon as new episode comes out, and I love all of Emily’s different shows; between Struggling Sisters, Problem Solved with Rebecca Smith of Better Life Bags (another love of mine) and her Just Em segment, they’re all so good, and totally worth your time.

 T H R E D   U P

Thred Up

2. Thred Up. I never used to understand the excitement about consignment shopping. I was told that I needed to find something really great and that once I did I would be hooked, but all I usually saw was a sea of unorganized clothes. Then it happened when I went to visit my sister at college and she took me to a trendy consignment store where I bought an amazingly cute dress for $3. There was my hook. So I frequent our local consignment shop a few times per year, and swing by our Goodwill occasionally, but it’s hard to find time to get out, so I was pretty pumped when I discovered this app. It’s online consignment shopping and it’s ah-mazing. Shoes, bags, dresses, sweaters, jeans. Tons of name brands, if you’re into that sort of thing. All for dirt cheap.

J I O B I T

Jiobit

3.  Jiobit. After a little boy with autism went missing and was later found dead, Ike felt the panic that I feel almost daily when I think about losing Mark, so he put us on a wait list for this GPS tracking device and a couple of months ago we found out that we were able to purchase one. We researched a lot of them and we liked this one because it’s tiny enough to conceal on him, and clip very securely to his pocket, but big enough for Mark not to swallow. Win! It arrived last weekend and already I love it. I can see exactly where he is, at all times, and know when he has arrived at his destination and can receive notifications when he’s on the move. We currently have Project Lifesaver, which is a tracking device worn on his ankle that utilizes radio frequency, but the only way to track him is to call 911 and have officers use special equipment. So even though that is more accurate than GPS, we would have to call the police immediately whereas now we can at least try to find him while someone calls 911. We like to think of protecting Mark in layers; we built a fence, installed door alarms and sensors, and now between the two devices we’re hoping that it will increase the likelihood of recovering him should he ever be lost.

W A L  M A R T  G R O C E R Y  P I C K  U P

Wal Mart Grocery Pick Up

4. Walmart Grocery Pick Up. Game changer, friends. I know that I’m late to the party on this one too, but after getting into a routine and befriending Dave, my personal Walmart shopper, I really like how much this simplifies our weekly routine. I order my groceries and meal plan while I wait for Jillian at dance class, then pick my groceries up the next day just in time for the start of the weekend. I like that I can edit my list even after I check out, and that it saves my favorites so I won’t forget what to purchase next time. Although it is semi creepy that they track me when I check in on the app, it does allow them to see right when I get there, and they are ready right away with my bags, so I’m good with it.

T H E   C A L M    A P P

The Calm App

5. The Calm App. I’ve been in counseling for several months. I highly recommend it, as it has been instrumental to helping me process many things on so many levels, but this app is very helpful in the moment. I scored it half off for the first year when I grabbed it on Black Friday. I have been working through the “7 Days of Calming Anxiety” meditations, and let me tell you, I have taken away so much. This is a gem of a cognitive behavioral therapy tool. I recently caught myself getting carried away with anxiety, and without much effort I was able to re-frame and move on, rather quickly. They also have sleep stories that you can listen to as you drift off to sleep.

N U U N  H Y D R A T I O N

Nuun tablets

6. Nuun. While trick or treating this year, I talked with a friend about my low blood pressure, feeling blah, and basically running on fumes. She mentioned her recent POTS diagnosis, how she had increased her salt intake and how she noticed that it made a difference with how she felt. At the end of the evening she gave me a few of her strawberry lemon-aid Nuun tablets, and suggested I try them. I finally did, and I LOVE them. Clearly I must need to replenish my electrolytes because I feel so much better when I drink water with this added. It’s like an energy drink without the chemical garbage. Hooray!

A C U R E  S H A M P O O  &  C O N D I T I O N E R

Acure Lemongrass Shampoo

7. Acure Shampoo and Conditioner. I look for non toxic natural stuff when I can, and most everything I own is either fragrance free or made with essential oils, but a decent natural shampoo has been elusive. Natural shampoos often leave my hair feeling like a Brillo pad, which then requires additional products to recover from the hair assault. Then I stumbled upon Acure’s lemongrass shampoo and conditioner. It smells sooooo good, is free from all the scary stuff like parabens, phthalates, sulfates, silicone, mineral oil and petroleum, and actually does what shampoo and conditioner is supposed to do, clean my hair and not make me look like I’ve been shipwrecked, thus I am happy.

T H E  I N T E N T I O N A L  F A M I L Y

The Intentional Family

8. The Intentional Family: Simple Rituals to Strengthen Family Ties. I have very, very little time to read but I have started this book, and so far I’m loving it. I actually heard about it on a podcast episode on The Struggle Well Project podcast. It was written by a family therapist who gives practical methods to increase communication and create an environment for straightening bonds. I want to create traditions and rituals that become the soft place for everyone to land, and I think I need a manual to help me do that.

D U C K  D Y N A S T Y

Duck Dynasty

9. Duck Dynasty re-runs. For a few years we didn’t have cable. And when we finally rejoined modern  society, I realized that Duck Dynasty ended, which made me super sad. Although I could never get behind the Kardashian’s, I enjoy most family based reality shows. From Run’s House to Hogan Knows Best, to pretty much any of the shows on TLC, I’m glued. My favorite class in graduate school was my Couple and Family counseling course, so maybe families just interest me in general. But this one is my favorite. So imagine my joy when I realized I could talk into our remote and ask it to record Duck Dynasty rerun episodes. I was delighted! And still am. I have 44 episodes to watch. Where was this when I was up in the middle of night for almost 18 months?

S L E E P,  P R E C I O U S,  S L E E P

10. Sleep. Speaking of, the last thing I am loving, maybe more than anything on this list, is that Luke is finally sleeping through the night. Dark circles be gone. Praise the Lord! I had no idea when that little bundle came into the world five weeks early that I would spend almost a year and half without a solid night of sleep. I also had no idea how critical sleep is for my mental health. I’ve had so many moments of totally paralyzing fear and anxiety, and I realize now it was because I was getting such short spurts of sleep.

Self care makes me uncomfortable, just the thought of trying to figure out how to relax stresses me out, but I can wrap my head around a great smelling shampoo, binge listening to a podcast and sipping on strawberry lemon-aid flavored water.

So tell me, what do you do to take care of yourself? Special needs parents, we have to do something, because otherwise…. eee gads.