Burying My Grief in the Sand

As I was looking through the photos from our beach vacation last month I noticed one particular picture. I was seated between Mark and Jillian on the beach, smiling at the camera, completely enamored with my kids. Mark, who I thought would never be able to tolerate any of this, seated to my right happily situated in the sand, burying himself, and Jillian to my left taking a brief reprieve from the ocean. And then I realized something was missing. Grief. I wasn’t mourning what we didn’t have. I was abundantly celebrating the gift that I was so gracefully given.

Five years ago I would have focused my energy on grieving the fact that my kids weren’t playing together; they weren’t building a sandcastle, chasing each other on the beach, or playing Marco Polo in the pool. I would have been sad that we weren’t doing normal things. And today, I’m thankful we had the opportunity to go on vacation and enjoy it through Mark’s eyes.

2015 was marked with diagnosis, after diagnosis. In January we received the autism news, in August, we learned about the genetic disorder, and the fall was rounded out by my Mom’s discovery of breast cancer. We spent the following year traveling to all of the associated medical appointments and acclimating to the world of therapy and mom’s cancer treatments. Going with mom to pick out her wigs was surreal, and that first trip to chemo was sobering.

I vacillated back and forth between terror and extreme sadness at the prospect of facing this very different aspect of motherhood possibly without my mom, and anger that everyone else around me seemed to be living life completely uninterrupted. And I couldn’t bear to watch people take vacations or enjoy the fruits of summer.

In fact, in the summertime, I would fast from social media so that I wouldn’t have to look at people’s vacation photos while I sat in a waiting room. I was bitter because my reality included having a child with so many problems that we didn’t even know where to start. Between significant gastrointestinal issues, a couple of broken arms, and all of the associated deficits with Mark’s genetic condition, we were on the road every summer but we were headed to hospitals and clinics, not baseball games or the beach.

Given Mark’s constant bouts of diarrhea, inability to handle changes in routine, even taking a different route to a familiar destination, I would have never thought that my family would have been able to successfully go anywhere. Until this year.

We decided to be brave and take a chance on a trip. I wanted the kids to experience the vastness of the ocean, the magic of evening summer beach sunsets, and the peace that only waves and saltwater can bring, even if it meant total insomnia and meltdowns. I imagined us taking turns being up with Mark at night and I envisioned him screaming as the sand touched his feet.

In anticipation, I created a social story that showed each of the rooms of the beach house and explained what we would be doing for the week. I set the photos to music and created a video for him to watch. I made lists, lots of lists, and said prayers that he would adjust without too much trauma. I feared the possibility of a bathroom trip and the need to wear a mask. I churned with anxiety and dread about this vacation.

And then we arrived at our destination, and Mark joined his brother and sister squealing as they ran from room to room on each floor of the beach house. He was just as happy as they were to be someplace new and interesting and to be out of the car. We unpacked, settled in and he seemed at ease and at home, but there was still the potential challenge of sleeping someplace new. He’d never really slept away from home and I had no idea how we were going to safely contain him at night so we had brought a bed tent to mimic his enclosed bed. And to our wonderment and surprise, he happily slept all night, along with everyone else.

The rest of the week was a series of pleasant surprises. Mark loved the ocean! In fact, he would let it carry him away if we would have let him. He enjoyed being in the pool, and when we had downtime he loved to perch cross-legged on a chair in the corner of the deck happily playing on his iPad as we all hung out. He was vacationing, Mark style and I couldn’t have been happier.

And then one night toward the end of the trip, we decided to build a fire on the beach. We took all the chairs, supplies, and the kids, and trudged across the dunes to our spot. We fully anticipated that one of us would need to be on guard with Mark ready to sprint. And once again, he surprised us. He sunk down into a beach chair, buried his feet, and relaxed as he listened to music and the ocean waves. Not once did he bolt or panic. I kept tearing up as I looked at each of my family’s faces and took pictures, trying to savor and cement this moment forever. I needed to relish in the fact that I wasn’t yearning for anything more. I wasn’t sad that Mark wasn’t interacting with us in a typical way, or that he didn’t care about seashells or ghost crabs. No, I was blissfully enjoying the gentle-spirited boy who God created, rather than the neurotypical boy that I used to wish for in his place.

I also needed to reflect and remember how far we had come. No more loose stools. No more intense anxiety and panic. We had arrived at calm, and we were together as a family celebrating that achievement. Without saying it, I knew that every single one of us around that fire knew how significant this was.

My sister and I took a photo with my mom that night at the fire, and I felt tremendous gratitude for the opportunity to be with our mom on the eve of her birthday and five year anniversary of being cancer-free. This vacation was a symbol of triumph, growth, and the abundant blessings that I feel thankful to recognize and enjoy, without the heavy grief that followed me around for so long.

Social Stories for Everyone

In anticipation of our beach vacation, I’ve been prepping our middle child for the disruption in routine, change in his environment, and new expectations that a beach trip will bring because autism is often accompanied by its companion, anxiety. Our son struggles with newness, which results in crying and escape behavior. For years we’ve used social stories to help him navigate change, and it has evolved into social story videos where we convey what will happen, who will be there, and what he can expect to experience. We do this to reduce his anxiety and give him the confidence to approach new situations, and it occurred to me this week just how powerful this tool really is and that we all could utilize it right now as the world reopens and moves through each states phases and restrictions.

My dentist’s office created a video showing patients exactly what visiting their office will now look like. It began with entering their parking lot, followed by direction to call their office. When determined safe to enter the building, the staff member walked the patient in and straight back to their treatment room. The video tour showed the changes made to the waiting area; no longer filled with chairs and hard to disinfect magazines. Next was the extensive steps taken to minimize touchpoints and germ exposure. In doing so they are helping to reduce the anxiety associated with a change in routine, environment, and expectations, thus allowing patients to comfortably resume their service.

At the start of the pandemic, I had read a meme that said “The whole world is frustrated with last minute change. NOT SO FUN IS IT? – AUTISTICS EVERYWHERE” and it completely resonated with us because we are constantly in the business of jumping through hoops to traverse unexpected events and changes in our environment with our son.

I think that we could learn a lot from our friends with autism and what works for them. I think we may find that we don’t cope much differently and can respond to the same steps used to address the anxiousness that we are feeling as we begin to transition back into a world filled with Plexiglass shields, mask requirements and one-way directional flows.

Families need to understand what it will look like for their children to go back to school, whether that is to preschool or their first year of college. And until they envision it, much like prospective buyers eyeing homes for sale on the market, unless it’s staged and displays the potential, the property will sit, and the same goes for colleges praying for increased enrollment. Families will nervously sit, wait, and watch.

Until we can acknowledge and address the anxiety that exists, we will remain in this painful limbo of uncertainty, which just serves to further increase the anxiety already present. Let’s take a page from the autism handbook, and begin communicating with each other what the expectations will be, how things are different, and what we can do to move through this new world.  I encourage businesses, preschools, therapy clinics, schools, and colleges to consider demonstrating what returning will look like. I think it will do a ton of good to help us all return with confidence.

Meanwhile, I’ll be over here, showing my son the video I created that gives him an audiovisual tour of where we will be staying and what he can expect. By doing so, I am involving him in the learning process, and this involvement translates into the empowerment to move forward with confidence.

For tips on creating social stories, check out:

Next Time

On Thursday night I flopped into bed after one of those days that just didn’t start well. We had overslept, scrambled, took showers throughout the morning between meetings, the luxury of working from home I suppose. It was just one of those days, and we could all feel it, especially Mark. As I laid in bed, at the end of a day that made my skin crawl, I was watching the news coverage of the riots in Minnesota, feeling the sadness and heaviness, and I could hear Mark screaming from his room. He was sobbing and yelling indecipherable things, and as usual, because he can’t tell us what’s wrong we had no idea how to help him. Ike went in and redid the bedtime routine, putting his blankets back in the bed, reading him a story, and singing his goodnight song. As soon as Ike left the room, Mark chucked everything out of his bed again and resumed the screaming. Sadly, we’ve been through this routine many times before. We go through bad sleep jags which include weeks of screaming before falling asleep, night waking, and all the usual suspects of the poor sleep that seems to come along with an autism diagnosis.


It’s hard to find the words to describe not being able to comfort your child. I hear parents vent about their frustration, or guilt, with co-sleeping. And I know many parents love it because it’s bonding and snuggle time, and everyone gets to sleep. For us, it’s not even an option. Our boy will scream, and no amount of snuggling, soothing, or co-sleeping will stop it. It is probably one of the hardest things we deal with in the “unable to help him” category. 


Over the years, we’ve tried lots of things, honestly, too many to list. And what always seems to happen is that once I’ve ordered something on Amazon to help us address it, he’s mysteriously gone back to sleeping normally. 


So on this night, after the screaming and sobbing had gone on for close to two hours I said to Ike, “should I go in there?” Please understand that every ounce of me wanted to run into his room, rock my seven-year-old, and tell him that he’s safe, loved and that everything will be ok, but I’m also very aware of the heartache I carry around knowing that those actions and words likely won’t remedy the situation, and likely, will leave me feeling defeated. But, even so, Ike said “go be a mama to him”.  


So I took the risk. I went in, opened his enclosed bed, put the pillow and blankets back, and climbed in. He continued to cry so I wiped his nose and face, rubbed his back as the sobs lowered to whimpers. I then laid down and tried to coax him to lay down with me. He remained in a seated position on his knees staring out the opening of his bed at the color-changing essential oil diffuser perched on his dresser. As he watched it change from red to blue to purple, I could see his features soften so I began to sing to him. Hid forehead relaxed, his right cheek dimple appeared, and he slouched in relaxation as I sang several of his favorites. After I finished singing, I just laid there for a while watching him stare at the colors. Occasionally he would look down at me curiously, but mostly just stared. I reminded myself that he does a lot of looking at us through using his peripheral vision so I imagined the staring at the diffuser was staring at me. I talked to him, reassured him, and touched his hand. He mostly sat motionless with no response. 


As I laid there, I worried that if I got up and left he would go right back to crying, so I lingered awhile. He never laid down or cuddled with me. We did what we often do together, be together without words. He sat next to me in silence, content, and tolerant of my presence, and knowing my son as I do, I knew that was significant. 

Eventually, I climbed out of the bed opening, closed the door, and left his room telling him that I loved him. As I walked back to our bedroom, I listened, waited and it was quiet. When I entered our room, Ike looked at me and said “you fixed him!” And dumfounded, I realized that I had.


For the first time in seven years, I was able to soothe him. I’ve spent so many nights rocking him, reassuring him, pleading to God to stop the screaming. I’ve felt like such a failure for not being able to do something that I felt as a mother I should be able to do. I still don’t know what was wrong or what he wanted, and I wish I knew what parts of that recipe were helpful, but I came away with the confidence to try again next time.

Had Enough

I spent my Saturday morning catching up on school work with my children due to my inability to manage their schooling while I’m working. As I sat next to my seven-year-old with autism repeatedly giving him verbal prompts not to eat crumbs off the floor, and to focus on the computer screen, my almost nine-year-old daughter appears next to me and asks why our playroom is such a wreck and why it can’t be cleaner and more inviting. I thought my head was going to explode. I’m doing the best that I possibly can and it’s still not enough. And then I thought that this was a perfect metaphor for what’s happening in all of our lives. We are living in this giant uninviting, mess and we are trying to check the boxes, get the work done, and pretend that everything is ok when really it’s not. Now is not the time to point fingers, but I will point something out because I have had enough.

Why are we playing this elaborate game of make-believe? It is not possible to simultaneously work and homeschool children. It’s not just difficult, it’s not possible.

Our children have been ripped away from their classrooms, teachers, routine and established expectations, and have been thrust into their homes left to navigate their assignments without the swath of support that typically surrounds them while they face the uncertainty, the anxiety, and the unease that this pandemic has brought everyone. My daughter clutches to a little essential oil bottle called “Tummy All Better” as if her life depended on it. She’s desperately grasping for something that will ease the worry she feels in her belly and I can relate.


Teachers, I know you are doing the best you possibly can. I see you juggling your student’s needs along with the needs of your own household, and trying to survive just like the rest of us.   

School system administrators, your students will not be performing at their previous level. They will lose skills and that’s not your or the teacher’s fault.

Employers, your staff will not be producing the amount and level of work they did prior to the pandemic. And if they do, that means something else is likely suffering, perhaps their sleep, their family or their mental health.

Many of my own college students are struggling. They’ve been ill, have had ill family members, lost their jobs, and struggle significantly with their mental health. They are unable to function. They are trying really hard, but what we are asking them to do, keep trudging along and meeting deadlines is just too much. Some have cried out for help, some have dropped out, but a number of them have faded away without a word.

The message our family has been receiving from all directions has been, try to keep up with the work but remember to take a walk, enjoy the sunshine, and take care of yourself. This feels like someone telling a soldier in the middle of combat to take a breather and grab a coffee, while bombs are dropping around them.

No, no amount of usual prescriptive self-care is going to unravel the significant amount of turmoil and stress that we are all experiencing. 

Why aren’t we talking about mental health? Why aren’t we acknowledging it’s significance and importance? Why does it feel like an afterthought?   

Caring for our selves and others is about adjusting our expectations to our present reality, giving grace, and offering copious amounts of flexibility. This is not just about saying to employees “remember to take care of yourself”, it’s realistically leveling the expectations. My kids seemingly cute cameos during Zoom calls are just the tip of the iceberg. Their needs trump my work, as they should.  We need to be ok with work piling up and giving an abundance of flexibility to staff who are caring for others. That may seem counter-intuitive to the push to reopen the economy and return to business as usual, but the only way we are going to return is if we can survive this pandemic, both physically and mentally. 


The mental health toll that this is taking is grossly underestimated. Whether you believe this virus is a political scam or you recognize this pandemic as a very real threat to American public health, the fact is, this change in life has had a powerful, tremendous, and underestimated impact on all of us.  And it’s time that we stop pretending that it’s not. 


I’ve had enough, and I’m sure you have too. To me, the answer isn’t found in circulating political vitriol placing blame on both sides of the aisle. The answer is adjusting our expectations to the present reality and embracing the fact that we are not returning to pre COVID-19 reality any time soon, or possibly, ever. This is not temporary. This has changed the landscape, and we need to fully wrap our heads around that fact and respond appropriately, and we desperately need to be gentle with each other.

We need to take a break to enjoy the sunshine, breathe in the fresh air, and be away from a screen without the resulting guilt and weight of heavy expectations. We need time to wander, to explore, and to rediscover ourselves without the tug of looming assignments and deadlines. If we could release some of the pressure then I’d venture to say we would be more productive and capable of contributing and reopening the world. 


Let’s walk the walk of patience, love, forgiveness, and grace and bestow those gifts to others. We need these now more than ever. 

Hand to Hold

Before the COVID-19 school closure, each morning we would drop our son Mark off to school, place his backpack on his back, and give his hand to a paraprofessional. Whenever it was my turn to drop him off, he would look over his shoulder and whisper a soft “bye”. I would drive away to work and begin my day knowing that he was in good hands.

Like many parents of children within special education, our days are now filled with Zoom meetings and Google classroom tasks, along with providing their services, or at least making the attempt. We had traversed music therapy and school sessions online with slightly more success this week and yesterday Mark had a physical therapy evaluation. As many parents of children with disabilities know, evaluations and testing are our least favorite as it reminds us of where we are, and how far away it is from where we’d like to be. And so there it was; an opportunity to see how difficult gross motor skills are for him, and to see just how far we need to go, in all ways.

It took two of us to help him do his exercises. Ike squatted behind a yoga ball as Mark teetered on its top unable to keep his balance, while I stabilized his arms and raised them together over his head at the prompting of his PT. He engaged for part of the session and then finally scampered off to go vocal stim in the corner of the dining room as he leafed through ABA vocabulary cards. I expressed my concerns about all of his motor challenges, was given exercises and advice to help him, and then exited the window of the virtual session. I felt my bottom lip quiver but didn’t have time to pause, so I sucked it up and went back to work, answering frantic emails from students and navigating my long to-do list.

Later in the evening, after everyone finished dinner I sat perched on the edge of my chair leaning in toward the laptop on the dining room table ready for another whack at a school assignment. I began staring at the crumbs falling beneath Mark who was seated to my left. He had resisted staying next to me for his virtual school sessions so we pulled in the adaptive chair from the kitchen that has a padded foam seat on top that allows him to feel more secure, and incidentally, has a hole in the front exposing the internal foam. So there we sat, as I tried to help him attend the meeting, all the while he was picking away at the seat watching delicate little foam flurries fall to the floor. He had a vacant look on his face as he did this, almost memorized by the activity. I was just happy that I wasn’t physically having to keep him seated.

Eventually, the fascination turned from observing to trying to consume, and then that became my new mission as we attempted to continue to listen to the AB pattern instruction on the computer. Jillian came over and said “Mom, does Mark have pica?” Sort of startled by her recognition of what it was to eat non-food items I just sighed and said, “yes”.

We made it through the lesson and the next task was to cut and paste small square blocks into place on a line to complete a pattern. As I hovered behind him, continually brushing the foam seat crumbs away from his hand as they desperately tried to reach his mouth, I kept telling him “helper hand” as I placed his left hand on the paper and then instructed him to “squeeze” the adaptive loop scissors in his right hand. And then I waited. After several seconds he would squeeze his little fist and the scissors would make a cut on the paper. Squeeze. Wait. Squeeze. Wait. This repeated until he cut all the way through the paper. We made it through that part and then on to the gluing, as I continually knocked foam seat crumbs out of his hand. Finally, he placed the last square completing all of the patterns. I yelled “great job, Mark!” and told him he could have a break before we attempted another lesson. As I sat there at the table, I slumped down and looked at the foam crumb mess at my feet and the composure of encouragement and patience was gone. The lip quiver that had started hours before gave way to sobs.

As completely overwhelming as schooling and simultaneous working is, the reason I lost it is because I am in it 24/7. And the “it” I’m referring to is the land of disability, special needs, specifically my son’s special needs. I am lost in a sea of phone alarms that remind me to take him potty because he hasn’t developed the ability to recognize the need to go and my day is governed by oven timers and verbal prompts; “one more minute with iPad” in order to avoid the meltdowns that occur when we don’t give such warnings. It’s also filled with multiple breath-holds when as we place food on his plate. Will he eat his chicken and newly loved favorite pickles? Or will it be another Larabar?

When I changed jobs three and a half years ago to switch from general academic advising to working in the disability support services office there was definitely an initial “what have I done?” moment when I realized that my working day would be filled with disability-related concerns and then I would arrive home to the same, but as time went on I realized that it was still easy to detach from my reality. The issues of others were easier to digest because they weren’t my own.

I could leave our strange bubble in the morning, drive 30 minutes to work which would allow me to transition from a tired mother of three trying to hold it all together to an employee who could show up for other people.

And now here I am. In it all the time. I am filling the shoes of Mark’s teacher, paraprofessionals, and multiple therapists all while trying to be his mother between phone calls and emails.

That’s why this is hard. We can’t get away. We are stuck facing the reality of our children’s deficits and challenges without the help of the team normally in place to help us approach our hurtles head-on.

I am standing in front of a giant wall with my son at my side, and everyone who normally supports us is confined to a small screen accessible by meeting link and passcode.

It’s lonely here. It’s isolating and not just because we are stuck in the house, it’s because we are on an island without our supportive village. They are cheering for us but not holding our hands. And right now Mark and I both need a hand to hold.

Peeling Back the Layers

Yesterday I spoke to a friend who works in healthcare. She confessed that she was not handling all of this well in comparison to others around her. She had to coach herself to get dressed every morning. Her depression and anxiety were worsening. I told her those were normal feelings in response to this very abnormal turn of events, and not everyone around her was enjoying the state-mandated social distancing and quarantine. She kept saying how thankful she was to at least have a job as if it was supposed to cover up her feelings in response to being on frontlines facing an invisible enemy.

On the surface, if you ask me how I’m doing, I’ll share that I miss my work clothes. Waking up and selecting from a series of yoga pants and a t-shirt has lost its charm. I love athleisure wear as much as the next person but I’m missing my dresses, real pants and clothes that make me feel like a person and not a human kleenex. I make way too many passes past my pantry, and my stretchy pants are just furthering enabling the incessant snacking.

Then I’d tell you how supervising and attempting to educate my children while working full time is laughable at best. We are not homeschooling. Teaching is a full-time occupation that requires preparation, forethought, and planning. I never intended to do any of this so no real teaching is occurring. We are traversing Google classroom links, Zoom meetings, and trying to understand how to step into the very big shoes of our children’s teachers. And if you’re like me, you’re feeling like a failure.

My son requires paraprofessional support in the classroom and we, like many other special education families, have been thrust into the roll of figuring out how to get our children to attend virtual classroom Zoom meetings. If you’re curious, it’s not going well. He also depends on very structured routines. This is also not going well despite my best efforts to make pretty visual schedules, phone alarms and commanding my family members to be aware of said schedules.

Just like all other parents of young children, we are interrupted a million times per day for drinks, snacks, meals, help in the bathroom, diaper changes, and kissing boo-boos.

Further beneath the layer of juggling work and childcare, I am also stopped several times per day because my daughter suffers from anxiety and panic attacks. Want to know what her number one trigger is? Illness. Can you imagine what a global pandemic does for a person terrified of getting sick, not to mention sick from a deadly illness? 

I’d then tell you that our life, which is normally chaotic, has been turned up an obnoxious notch to absolute insanity. Like my daughter, illness is something that I normally fear and is the source of my PTSD. Guess who already had latex gloves, N95, and surgical masks, along with cleaner that kills the coronavirus? This girl right here. I did grocery pickup way before it was the cool, less risky way to buy groceries. And guess who washed her hands constantly and used disinfectant spray on my phone, doorknobs, and remotes on a fairly regular basis? Yup. I’ve been preparing for a pandemic since my son Mark was born. Why? Because illness for us means weeks of misery and unknown. It means regression. Food and drink refusal, loss of words and incessant irritability and crying. And it could mean the development of seizures. I am always on guard and now the rest of the world is too.

And further beneath that layer, I’m shaken. Each time I read a news story about a vivid, excruciating experience with COVID-19, I am pushed to this place where I begin to imagine what it could be like if I was one of the unlucky ones; one of the ones to die alone in a hospital with my loved ones listening to my labored breathing over the phone.

I think of my parents and in my in-laws who are in the age bracket of those at risk. Both my mother and father-in-law are cancer survivors with underlying health conditions. My dad is an essential employee. My grandmother is 90 and living in an assisted living facility. The first death was reported in our county today, a person in their 20s with disabilities. Each and every stat and report of cases and deaths further stirs my worry.

And then I scroll past the story of Charlotte, the little girl who inspired Charlotte’s Web, the CBD product used to treat epilepsy. She had SCN1A, a sister gene to Mark’s genetic mutation, SCN2A. Mark falls into the underlying medical condition category, and one of the people who may not fare well in the face of this virus. That is the dark place plunged beneath the layers of overwhelm and irritation. The place which reawakens my fears and leaves me wide open and vulnerable, just like my daughter who keeps telling me the house feels different and she can’t quite explain it.

I am not doing well but it’s because I am having a normal reaction to an unprecedented global pandemic, on top of the layers that were there before the coronavirus descended.

So no, my healthcare friend, you are not bad at this. You are human, experiencing real feelings that shouldn’t be diminished because you at least get to collect a paycheck. There is no place for comparative suffering amidst this pandemic. I’d venture to say we are all experiencing waves of panic, grief, uncertainty, and unease. No one is guaranteed their job, food, toilet paper, their comfort or their loved ones. And feeling those feelings is natural and thankfully bonds us together in this chaos. We may be socially distancing but we can experience closeness knowing we are not alone.

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

0FFA9172-81ED-43FA-B6EF-FF913F418EA7.jpeg

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.