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.

I Feel You

Yesterday morning I chucked a hair brush across the room. Not at anyone, thankfully, but in response to my frustration over brushing an uncooperative, and argumentative seven year olds hair. It was only 10am, and I was losing at parenting. I knew that at some point in the relatively near future I would see my poor behavior in the mirror. Fairly recently I caught Jillian getting up abruptly from her spot on the living room floor and grunting “I’m done” as she stomped out of the room. Immediately I could feel my cheeks and neck turn red with guilt that this move that she so quickly executed had been demonstrated by her mother. So as I was wiggling socks onto Luke’s feet as I tried to usher our family out the door to church, late as usual, I apologized for catapulting a hairbrush across the kitchen and explained that throwing things was never a wise choice, regardless of the motivation.

Later that evening as we were cruising toward bedtime I began listening to one of my podcasts as I crawled around on the playroom floor putting toys away. One of my true crime podcasts was going to have a one night event on TV and it was about to start in a few minutes. Rarely do I have the opportunity to watch something other than Daniel Tiger or Word World so when the idea of setting the DVR occurred to me I had no earthly idea how to do it, or more importantly how to do so while not causing a Mark meltdown because it would require stopping his show. As I plotted my next move, Ike suggested that I take Mark upstairs so that I could free the TV downstairs for my recording. So I scooped up my trusty Luke barnacle and with very little protest I was able to coax Mark upstairs to play. Happily back downstairs I set the DVR, and began picking up foam alphabet letters from the floor as I listened to my show. A few minutes later we heard a crash from the top of the stairs. Mark had thrown the DVD remote down our staircase. Ike ran upstairs to check on him. He could tell that Mark was agitated so he made sure that a Daniel DVD was playing upstairs and came back down. Within minutes I heard an even louder crash and boom. This time when I ran up I could see that he had trashed the upstairs bathroom. Books in the toilet. Water everywhere. Toothbrushes and hair brushes chucked. Sound familiar? Out of frustration from being taken upstairs away from his brand new season ten Daniel Tiger, he had taken out his frustration by throwing things, just like I had done that morning.

This has struck me for so many reasons. We often talk about the concept of presuming competence and I think it’s easier to think about that in academic or therapeutic settings, yet in the course of our family life I managed to completely neglect his feelings and preferences, and inaccurately presumed that he had none. I also underestimated his ability to observe and internalize his mothers poor coping mechanism.

If you have a Daniel Tiger fan in your house you know that new seasons happen somewhat infrequently so when a new one comes along your little fan will soak it up. I didn’t stop to think about how if this was Jillian there would be no way of prying her away from her show, not without a serious fight or negotiation of some sort. I made the inaccurate assumption that he could be torn away without discussion or considering his feelings.

Recently he’s been learning more and more about emotions. When he’s upset he blurts out every distressing feeling he’s been taught. He’ll wail “I scared! I sick! I hurt! I tired! Hungry!” even when he’s none or only some of those things. He’s beginning to understand the value in communicating his feelings and we have been soaking it up because one of the things that makes me the most emotional about our life is being in the dark about his feelings. So this time, he lacked the words for feeling ignored, overlooked and brushed aside, and he very clearly communicated that he not only had feelings about what had happened, but they were big, explosive and needed to be felt.

Mark Timothy, I see and feel you, and just like I promised Jillian that I would do better, I promise to do better for you too.

Small

As I drove to work this morning I was venting my frustrations over speaker phone to Ike and something he said hit me. As I named off thing by thing that explained my lack of patience and aggravation, he said that I was like the Cleveland Browns. I was 0 in 16 and what I needed was a victory. And in a small, helpless voice, I responded and said “but I can’t control a win.” And at that moment I realized it, the hardest part of this journey, the part that makes it so incredibly draining, heart wrenching, and depleting, is the powerlessness that I feel as I look up at all of our looming mountains.

As I walked across campus to work, I saw students hurrying to class and I remembered that fresh, college student feeling. That space where I knew that if I just worked hard enough, I could earn the A, win the approval of my professors and inch closer to my degrees. What I did felt like it was moving me in a positive direction and the effort I put into my work was reflected in incremental little victories at the end of each semester when my grades were posted, and credits were earned.

Almost a decade after earning my graduate degree, and the space I find myself now, three children later, deeper into my career and launched into the world of special needs, leaves me feeling more like a hamster on a wheel, with my cheese withheld.

What I have learned so far on this journey has been that hard work doesn’t always pay off, determination and enthusiasm, while admirable, won’t persuade my husband’s employer to expand their insurance coverage. A really strongly worded, and passionately written email won’t motivate the insurance representative to help me any faster or with any more accuracy. And a letter to my local county commissioners elicits a stock response, and no further funding for education.

I have become acquainted with realizing that I can’t really control any of this. It’s been a hard lesson to learn but I believe that I’ve gotten it. However, what’s a tougher pill to swallow is that the work and passion that I put in doesn’t move the needle very far. And often I’m left feeling like I’m losing ground and working backwards. The more vocal I am about things, the more toes are stepped on and the more isolated I feel.

When I zoom back into our microcosm, I do not neglect celebrating the inchstones, as many special needs families have grown to do. Cart wheels when I hear a new word, back flips for a sentence, and fanfare when I realize that we can partake in something normal as a family. I relish in those moments, savor and soak them up, and they are the victories that matter most. Yet, as there is always a yet, I am often struck with this powerful feeling of smallness.

As I was getting ready to head to bed last night with that same familiar feeling of exhaustion and discouragement, I heard crying from one of the kids rooms. At first I thought it was Mark because he’d been sick but then realized it was coming from Jillian’s corner. She couldn’t sleep because she was thinking and rethinking about her field trip to Children’s Village. This was a trip that she had been dreading because of the content. They would be talking for hours about fire safety, and my poor, sweet girl has developed an intense fear of fire, to the point of tears during birthday parties when the candles were lit, so I knew that this field trip was going to be a tough one. She had chatted on our way home about making the practice 911 call, stop drop and roll, and some of the other activities of the day, and I felt proud of her that she had made it through. But what I didn’t realize until I heard her crying in her room in the dark was that she needed to debrief from her day. She needed to talk through the scary parts, to slow down, and walk me through what she was up against. We laid together, and I listened as she told me how she shook while she made the practice call, the feelings she had in her tummy when she walked through the burned building and how she just wanted it all to be over.

So even though it seemed like she made it through with her chin up, she was powerlessly shaking in her boots. And I get it, as I am shaking in mine.

I may complain about our insurance struggles, or about the need for more local special ed resources but what I meet in the dark at the end of the day is the fact that this is our reality. I have a son who’s five years old and can’t tell me how he feels, or how his day was, or what scares him. A son whose room is always clean, with no photos or pictures tacked up to a bulletin board, and no notes or treasures hidden under the bed. No little clues like I find in Jillian’s room. No fights about Halloween costumes or what to pack in his lunch. A son whose thoughts are far away and off limits. A person who lives in my house but feels a million miles away. Someone that I miss deeply, but is right in front of me.

And so as I laid in my daughter’s bed, as she recounted her fearful day, I shared her heavy feelings of smallness, and I understood them, more than she will ever know.

The Messy Middle

I had a doctor’s appointment last month and while waiting for the doctor the medical assistant asked me where I vacationed this summer. I answered that I spent my entire summer sitting in the doorway of the half bathroom waiting for my five year old to pee. In fact, I had gotten quite good at nursing my baby sitting cross legged in front of the toilet while I made sure said five year old didn’t escape. I’m pretty sure the medical assistant was happy that my chart was updated and probably sorry she asked. And just last night Jillian told me about how she had to a write a narrative in school about where she vacationed this summer and felt a little funny since we didn’t go anywhere, or really do anything. Even so, I felt a strong sense of honor that I was helping Mark take one step closer to independence, and it was a personal challenge.

If I could potty train him, then I could do anything, and if I couldn’t, there was no soft place to land.

After a few days of training I found myself on the couch in my therapists office with anxiety through the roof. I gave her a run down of the weekends potty failures and explained that they very much felt like mine. Each time he would have an accident it was my fault. I didn’t get there fast enough, I didn’t time it well enough, I hadn’t trusted my math. I was assigning and assuming blame. Everything is so difficult to teach him. It takes so much repetition, patience and more repetition, and I honestly didn’t feel up to the challenge. I called another autism mama who had been down this very road before and she told me that through this journey I would earn my stripes; and I needed to, for my confidence and sanity.

As the weeks went on, he spent more and more time in underwear, and very slowly the carpet cleaner and disinfectant wipes made their way back into the cabinet. And by the time school was about to start we had successfully reached the goal of trip training. Mark would pee when we took him with no verbal or water prompting and he stayed dry between trips. And his reward? Music! It took us weeks of giving cookies, his sisters off-limits Legos, new books and toys, before we figured out that this precious boy of ours just wanted music. We would play “Hey Ho” by the Lumineers each time that he was successful and it was like Christmas for him.

Eventually I began to ponder and calculate how we could teach him to initiate and communicate his desire to go. We added a PECS card to the door jam of the bathroom with a picture of a toilet and on a few occasions Mark took his therapists hand, grabbed the card, said “go to potty”, and went to the bathroom. We had arrived!

The confidence that I lost over years of fighting and failing to teach him the most basic things was coming back and I felt so proud.

And then a few days before school started Mark fell and broke his arm.

As I was reading the orthopedists notes in the patient portal regarding his office visit, I read the line “due to the patient’s autistic severity I recommend a cast”. Mark’s break wouldn’t typically call for a cast but because he wouldn’t comply with a sling, a cast was the only option, apparently. Autistic severity. All of my confidence was lost and I felt so foolish for thinking that just because Mark began to recognize letters and numbers, that we were somehow escaping the confines of the diagnosis that I hated. I felt silly for celebrating his milestones and upset that in a matter of a five minute visit the doctor concluded that his autism was so severe that we couldn’t discuss less constrictive options. My confidence was shaken and I felt that familiar heartbreak all over again.

And Mark’s confidence must have been rattled too. You wouldn’t think that a broken arm would unravel potty training but it, or the start of school, has. We are now back to going through multiple pairs of underwear, cleaning the floors, and my deep sense of failure has returned. I live and die by Mark’s successes and pitfalls, and this is killing me.

And just as I began to throw myself a pity party, Mark’s stimming behavior has ramped up, and a new tick has been added. He now abruptly yells and accompanies the shout with a head jerk. I see him shaking his head a lot, and the vocal stims are in full force. Or maybe I’m noticing it all more because the words “autistic” and “severe” are reverberating in my head.

His SCN2A diagnosis also looms in the background as I read the age of seizure onset for each new child that is introduced in our online community group. Every new behavior makes me question whether it’s seizure activity. I had a dream last night that Mark was having a seizure and we were racing to the ER. It was so real and this morning I felt a sense of somberness knowing that everything could change just that quickly. His regression of potty skills make that worry even more real and I begin to imagine how very different our life would be if seizure control became the new goal.

On Friday night I found myself slumped over my phone at the dining room table watching videos on You Tube of different types of seizures. I was Googling. And I was worrying.

A question that my therapist asked me sometime in the middle of the summer of potty was, “what do you need to have peace?” And I’m still puzzled and stumped by this question, because I am far from having peace as I generally feel pretty tortured.

I had hoped to return to blogging at the start of fall with a happy report that we had done it; we had accomplished the seemingly insurmountable goal of toilet training and we were ready to wave from the other side, but instead we are in the messy, painful middle. And maybe it’s helpful for others to see what the middle looks like as we are often too quick to share where we started and where we landed.

So I’m waving hello, sending a post card from potty boot camp, and hoping to arrive home eventually.

The Box

As I thumb through the sea of high school graduation photos in my newsfeed I see all of the shiny, happy faces proudly holding their diplomas, and I can’t help but be reminded of the box we had to check a couple of weeks ago. In the middle of a season of celebration we’ve been grappling with a choice that most parents aren’t faced with at this point.

If you know and love a special needs family you’ve probably heard them groan about IEP meetings. And there’s reason for that. Though the intention of these little get togethers with the school system are to touch base as a team to develop goals, evaluate progress and make decisions, they often end up being an opportunity for intimidation and a power struggle further punctuating the special needs life with an emotional pummeling.

We had ours last month. Mark is finishing pre-k and so this meeting was intended to determine where he will go to kindergarten, but we knew that ultimately we would have to decide whether or not he will pursue a high school diploma. He just turned five and we are tasked with deciphering if he will be capable of earning one. In our county, in our state, this is the decision and this is when it happens.

I didn’t realize what I was choosing until it finally clicked during the winter when I made the seemingly unusual request to visit schools in the county to see the kindergarten programming options available.

According to IDEA, the LRE, Least Restrictive Environment, Mark’s home school, where he is districted to go, must first be considered. We visited. We talked with the principal and after several factors, determined that this was not the best fit.

We visited a school that had an autism program that would allow children the opportunity to pursue a high school diploma but with extra supports. Hearing that this existed I had determined that this would be our plan all along, but once again we ruled this out once we visited. As Ike and I peered into the classrooms we could see that children in this program were sent into regular classrooms with minimal support, and we realized that Mark would not be capable of doing that or being assessed like the other children. This felt like a giant leap.

So the next program we considered was a Life Skills class. This is where children with special needs are in a self-contained classroom with a special educator and typically two to three paraprofessionals tasked with helping the children attend to the tasks in the classroom and work individually. It’s a very supportive environment that, in addition to an academic curriculum, allows children the opportunity to work toward non academic goals like self care, at their own pace without being required to take state administered assessments. This program would lead students down the path to a certificate of attendance, not a diploma. We toured two schools that had these programs and felt that this would most likely be the place that would best support Mark.

The administration and staff reassured us multiple times that every year the choice to pursue a certificate or diploma would be revisited making the decision seem less final. This eased my mind and allowed me to feel comfortable with our mental choice of Life Skills, and then it hit me.

If a child starts out in a Life Skills program not following regular kindergarten curriculum, the challenge to switch over to the pursuit of a high school diploma in the future becomes an uphill battle. Once that departure happens the odds of an already developmentally delayed student kicking it into high gear and making up lost ground seem quite slim. This was confirmed when we visited one of the Life Skills classrooms and I posed a question to the staff about how often they’ve seen a switch from certificate to diploma and the answer was not many, if any at all.

The potential lack of diploma is an element that comes into play with my job, making the decision that much more layered, which gave me even more reason to pause.

My job as a college disability advisor has allowed me the chance to meet with students with varying diagnoses, including autism.

I’ve spoken with the parents of my students with autism and they have shared their paths with me. They chose to mainstream their children because these specialized programs didn’t exist. They pushed their children in with regular kids and though it was challenging their children met the requirements with the appropriate classroom support. They made a ton of progress, and the body of research supports this choice. Children with special needs, given the opportunity to be exposed and learn alongside their peers without special needs are more successful compared to those in self contained classrooms.

At work in April we showed the film “Deej”, the story of a nonverbal student with autism who not only graduated from high school with his diploma but went on to earn his college degree. Watching this documentary that showed a boy with no expressive language, with vocal stims, ticks and obvious motor challenges opened my eyes to the enormous potential of students with autism. Deej learned to communicate with assistive technology that provided him the ability to express through selecting letters. He showed teachers that he could learn, he could read and that he was an incredibly intelligent, articulate person.

Upon seeing the film, I was inspired. I purchased it for Ike watch. I purchased it for a fellow autism Mom to watch. And then I emailed the film producer asking additional questions. How did his parents know he could read? How did they find the right assistive technology to help him unlock his expressive abilities? When? How long? All the questions. The producer emailed me back promptly and copied Deej, explaining that he would be the best person to respond to my barrage of questions. So Deej and I have emailing back and forth. Like my other students with autism, he was mainstreamed, and with special support, he accessed the curriculum and demonstrated that he was not only capable of achieving a diploma but accepted into his first choice college.

Between my nonverbal email pen pal, parents of my students, teachers and service providers, and the IEP team amassed to help influence this big decision, we felt really torn.

If someone would have asked us six months ago if we thought Mark was capable of the rigor of general education, I would have said no, but within the last six months Mark has surprised us. He’s blurting out sentences, identifying numbers, performing tasks and following basic directions, but there’s still so much he can’t do, and so far he still has to go.

Ike wisely pointed out, we have to choose what’s best for him right now, with the information we are given and not focus so much on where he may or may not be in 13 years.

So here we are. The box has been checked. He’s off to Kindergarten in the fall, Life Skills, certificate track. As I type out these thoughts on my phone, I’m watching him make sure all of the doors are open in the LEGO structures that Jillian has built. He’s still obsessed with doors, ensuring that they are all left wide open. Ironically, that’s the very thing I’m trying to do; leave the door open for potential, possibility, and the chance to be one of those happy faces holding a diploma. And perhaps he’ll surprise us, like he often does.