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.

Be Gentle

A few weeks ago I received a paper in Mark’s preschool folder with two of the most anxiety provoking words for a special needs parent, field trip. Mark’s class would be visiting the theater on campus where I work for a kinder concert. I couldn’t imagine sending him anywhere outside of his routine without one of us going along so I requested to meet them at the theater; after all he was literally in the building next to my office. So when I found myself waiting for the bus inside the lobby a pit of worry set in and I quickly questioned my chaperoning choice. Mark is getting larger and more difficult to handle, and I’m a very petite person. Then a deep feeling of sadness took over as I began to think about how my presence doesn’t seem to really fix anything. Unlike when the baby falls and quickly recovers at the sight of my face, for Mark, seeing me may be a novelty for a moment but it doesn’t appear to change much.

Mark did better than I anticipated, adjusting to the new setting as we followed along to our seats in the theater, but then when the expectation was to remain there and be quiet, it was clear that I had a fight on my hands. Just as soon as I began counting the minutes until we could leave I realized that I needed to change his diaper. Fully aware that there were no places to change him in the building that wouldn’t freak him out I took his hand and lead him to my SUV in the staff parking lot. It was cold, raining and I had very little space in the back hatch area thanks to the boxes of clothing that needed to be dropped off at Good Will.

He cried, we wrestled and I prayed that none of my co workers would pull in next to me to see me struggle.

Once I finished the diaper change we headed back into the building and I prayed that he wouldn’t grow upset once he realized we weren’t leaving. I just kept telling him that once we got inside we could listen to music. We made it back into our respective row and our previous physical altercation resumed as I fought to keep him from escaping. At first he was subtle, pretending to cuddle in my lap in an attempt to spin into the aisle, and then he resorted to trying to body slam me. My jaw and nose absorbed some of the force and then I looked up and realized that an entire row of kindergartners and their teachers were staring at us. Mark’s vocal stims, loud noises and attempts to overtake his mother not surprisingly distracted them from the musical selection on stage. I also started to worry about not being able to handle him in the presence of his teacher and assistants. They handle him everyday and here is his mom unable to do so. Feeling the familiar sense of anxiety and dread, I decided to practice my newly discovered self talk. I began to silently say “I know this is really hard, don’t worry about people staring, just continue to love on him. You’ll both be OK, and this will pass soon.” I felt myself relax and my silent internal monologue was right. With the help of showing Mark photos of his little brother and telling him to listen to the music, I kept him in our row and it was over relatively quickly.


A few days before the field trip I listened to a Ted Talk by Kristin Neff who explained that she was a self compassion evangelist, spreading the good news of treating ourselves kindly. Being nice to yourself probably seems like a given but for me it was foreign. And I didn’t realize just how foreign until the end of her Ted Talk when she told the story of her own autistic child throwing a wicked tantrum on a transatlantic flight. Knowing that there wasn’t much she could do to stop it mid air, she paused, focused, placed a hand over her heart and in a sweet, compassionate voice said to herself “This is so hard right now… I’m so sorry you have to deal with this, but I’m here for you.” Upon hearing such inward focused gentleness the tears that I’ve held back for months burned my eyes. And it was in that moment and during the subsequent therapy session when I realized just how awful I had been to myself.

My therapist had asked me to go deeper, and to think about what was beneath the fears that I had unpacked. It took me some time but I realized that though I feared that my children would die, even more so I feared that it would be my fault. I would be responsible. I truly believed that every challenge we faced was my fault.

And it was this assignment of blame that plagued me and lead to the constant berating that has become the norm in my head. Common inner sayings would be,

“Why are you so tired? Now that you put the kids to bed go back downstairs and clean the kids playroom. You know that Mark thrives in a clean space. What if he or the baby chokes on a Barbie shoe?”

“Mark needs more variety in his diet. His restricted eating will only worsen if you don’t figure out how to work in new foods.”

“Mark isn’t talking because you don’t work with him enough.”

A lazy, incompetent failure is the message I had been sending myself on a daily basis for quite some time and deep down I had also adopted the idea that I was ultimately to blame for Mark’s diagnosis.

Clearly I have some work to do. Blame doesn’t need to be assigned to everything and I need to work through why I assume responsibility for it all.

So when I was introduced to the idea of speaking so sweetly to myself I ran toward it with open arms because I had been so parched for kindness that I forgot what it was like to be treated this way. So in that theater, wrestling my sweet boy, I decided to make a small choice to be loving and gentle to myself. And in doing so, I made it through a challenging moment and was able to see that I didn’t fail Mark, and in fact I may have actually been comforting to him.

Later that evening I said to him “Mark, it was so special for Mommy to go with you today.” And surprisingly he responded and said “special”.

He’s pretty special, and I’m trying to work toward embracing that his mom might be too.

The Weeds

When I was 14 I joined the color guard in our high school marching band. Not the twirling flags or rifles color guard, no no, the people that hold the banner and the American and state flags. I point this out because I was pretty confident about my incapability of doing anything more than that. After a few months of time spent with upper class men in the color guard who felt the need to put me in my place as a freshmen [read bullying], I had enough. I went to the band director and asked if I could be placed on an instrument. He needed French horns so I was switched into concert band and was handed this complicated beast of an instrument. I signed up for private lessons. I practiced and practiced, and by the time I was a junior I was first chair and selected for All County (big deal for band folks). I gained control over a completely powerless situation, and thus a coping mechanism was born.

The same would happen again and again as I got older. I would take seemingly challenging scenarios and fight my way out of and over them. Hard work, perseverance and determination paid off, every time. That equation served me well in my education and career. And then when Mark was diagnosed with autism and SCN2A I dug my heels in, and set into motion pummeling away at it like usual.

Eight months into Mark’s diagnosis, I was helping to plan a color run to raise money for research. I did a restaurant fundraiser, a quarter auction, a paint night, and then another color run the following year, and again this year. I threw myself into fundraising, advocating and learning everything I possibly could about autism and SCN2A.  I read books, studies, listened to podcasts and immersed myself in the special needs world. I started this blog. I wrote and shared, and poured myself into understanding insurance, therapies and biomedical treatment. Just like all the times before, I was going to educate, work and dig my way out of this rather troubling and unsettling situation. But this time it didn’t work.

Mark is not cured. He still has autism. And I’m in rough shape. My resting state has become that of dread and anxiety. I replay some of Mark’s scarier moments in my head repeatedly. I jump when my phone buzzes with a text or voicemail and I worry endlessly over the possibility of seizures. I fully realize that adding another baby to our family and the subsequent sleep deprivation has magnified these feelings but they are valid none the less, and my current reality.

I struggle to really engage at work. When I hear my colleagues chatting about their plans for a holiday or weekend, I can’t relate. I’m held prisoner in our home because being out in the the world is so much harder with a child like Mark. An unexpected errand or a stop at a foreign gas station will result in a head banging tantrum requiring me to hold onto Mark’s face and yell above the screaming “first gas, then home!”

I don’t watch any popular TV shows, go to the movies or have a clue about pop culture. I spend any spare minutes I have intensely focused on whatever obstacle is in front of us. This year after Mark entered pre-k I saw the issues within special education and I got to work advocating for improvement. (See the theme? Push, push, push.)

I’m a bad friend. I’ve forgotten birthdays, important things and anniversaries. I even forget to ask how other people are doing because I’m so inwardly focused. And I’ve fallen off the grid for weeks or months at a time, surfacing only to post on social media in an attempt to avoid complete isolation.

I have PTSD. And I don’t say this lightly. It’s true. We’ve been through a number of traumas and I’m stuck in the cycle of grief. I’m not in denial of our situation but I haven’t fully embraced its magnitude. I haven’t accepted that Mark will always be different; that our family will always look different. Our normal will not be the normal of my friends families. When people say things like “they’re only little for so long” or “enjoy these years, they’ll grow up before you know it”, anger bubbles up inside of me because Mark will be our eternal little boy and most likely won’t leave us.  I fully believe that research is speeding to a cure, but will it be too late for Mark? Will he be too old for it to reverse his neurological trajectory? It pains me to type those words and I don’t want to believe them. I have always equated acceptance with defeat and loss of hope and I haven’t been able to go there. Acceptance meant that I lost the game I was trying so hard to win.

I found myself sitting on a couch across from a therapist a few weeks ago after I reached a point where I determined that I needed reinforcements. She explained that hope and acceptance were in two different buckets. I explained how I felt that they were in direct opposition to one another. And then I told her how I felt about God. After I finished sharing how I felt like God was trying to repeatedly teach me something that I wasn’t getting, that prayer felt useless because He had ordained all of these troubling things and how I felt devoid of blessings, she looked at me and said that if she felt the way I did about God, she would be an atheist. In that moment I realized how incredibly lost I was.

I’ve mentioned before that I’m not a crier. I realize now that it’s because I’ve numbed myself. And what I didn’t realize was that I not only numbed the fear and sadness I have about Mark’s diagnosis but I also numbed peace, joy and happiness and haven’t had access to those feelings for quite some time.

I see the constant vacant look on Mark’s face and if I let myself really focus on that, and wish for him to come back to me, a knot forms in my throat and as quickly as I let myself slip into that place of sadness, I shut it down.

Sometimes I pretend for a brief second that Mark is cured. I imagine him engaged, talking, excitedly pointing to something, with an intense desire to share it with us. I envision Jillian interacting with him in a normal way. Luke and Mark playing together, and most notably I can actually feel myself relax. My shoulders come down from my ears and a feeling of hope and anticipation of our future as a family floods my senses. And as I feel the warmth of peace wash over me, I abruptly end the fantasy, bottle it up and shove the sensations away, to be replaced by fear, trepidation and hopelessness. I realize now that I’ve been placing my hope and ability to be happy upon Mark being cured. For many of us, we delay happiness until we get things like a new job, or house, or go on vacation, but I’ve delayed it upon something a lot further out of reach and potentially years into the future, if it all.

And then the feelings of guilt creep in. I feel guilty for feeling sad about Mark. He’s still alive. I’ve received the gift of hearing his little voice say a few choice words. He’s able to walk, not in pain (that I know of) and doesn’t require much complex medical support, so this should mean that I’m thankful, right? But he’s incredibly mobile, has no regard for his personal safety and has just enough awareness to be dangerous. He has angry outbursts when he can’t communicate effectively which results in gut wrenching tantrums and screaming. And most recently we’ve become acquainted with Pica as he’s been eating non-edibles he finds around our house. So then the guilt is replaced by fear of how much harder our life will be as a he grows and becomes too large to manhandle. And thus the endless cycle of guilt, fear and anger ripples through me.

Obviously I can’t outsmart this situation. I can’t crush it with determination and grit. What I have to do is much harder. I have to be still and know that God will fight for me; not necessarily for the cure that I want and crave, but fight for me to make it out of the weeds; for me to see the light in the distance, and embrace what I’ve been given. He has abundantly blessed us, and I often can’t see it because for every video I share of Mark saying a word, there are hours of lining objects and shrieking while he paces back and forth across the dinning room pushing a Doc McStuffins cart, looking past us focused on something unknown in the distance. And then there’s the several failed attempts at potty training and for the past eight weeks he has oscillated between vomiting and diarrhea, leaving us completely baffled. I have gotten stuck in the mire and I can’t seem to pull myself out.

There’s a song that became my anthem when we started our journey. I would sit at my desk while I watched Mark fixate on the knots in our hardwood floors while he spun in circles. Coldplay’s “Fix You” would boom through the house…

When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse

When the tears come streaming down your face
‘Cause you lose something you can’t replace
When you love someone but it goes to waste
What could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

Fix him. That’s what I have wanted to do from the start. Restore him to the little boy that I want so desperately to have. One that doesn’t have to work so hard for every single thing. A little boy who can focus, engage and allow us to know his wants and desires. And a boy who doesn’t have a ticking time bomb of a genetic disorder.

And instead it turns out that it’s not him who needs fixed.

God gave us the gift of Mark. I will miss so much if I continue this numbing routine. My kids need me to be present, they need me to not be such a jumpy paranoid mess and they need to get to know the person who stands up to challenging situations and makes the most of them. I know that I’m capable of that, I was at 14 and I am now. I just need to get my head back in the game, focus on Christ and for the first time truly embrace that there’s more in this life that I can’t control. Little by little, I know I’ll find my way but this time it probably won’t be because of my own doing, and I think I’m good with that.

Space to Be Brave

In the very early days of Mark’s autism diagnosis, I found myself in a little, darkened observation room, perched in front of a two-way mirror watching Mark during his special group speech program alongside other parents, who I would learn later were at the exact same spot on their journey. One of these parents has become a dear friend of mine, and as she put it when we first began chatting, she had unpacked her bags in the land of grief. She grieved what could have, should have and what she hoped would be for her youngest child of six.

Receiving a lifelong diagnosis for your child is a grieving process accompanied by all the stages of a loss. It’s tough to get to the point of acceptance, and often the path isn’t linear. We bounce back and forth between anger, bargaining, and sadness, flirting with acceptance but always hoping that our children’s lives will be better than professionals predict.

And while we’re processing our grief, we make brave choices to go out into the community with our special children because part of what we long for and grieve, is the ability to do things as a “normal” family. Perhaps we want to go out to a restaurant, pumpkin patch or a school function, we must make a brave choice to go forth and give it a try. And when this bravery is met with judgment, lack of understanding and stares, we question our choices and ourselves.

So when I received a distressed text from my friend yesterday afternoon that a couple of other moms stared at her son at a picnic at their church, my heart sank because I’m familiar with the risk she took. The risk to join the world and not have someone keep their child at home or stay at home herself. This is a choice we make each and every time we have an obligation outside of our normal routine. Who stays home, who goes and when do we be brave and give it a shot. So when we make the bold move to take our beautiful, special child out in the world, we shouldn’t also shoulder the burden of educating people, especially other parents. Raising a child with special needs is an enormous responsibility. Educating and encouraging people to demonstrate grace and acceptance should not be a part of this responsibility.

So to the mothers who stared at my friend and her son, this post is for you.

When you chose to attend this picnic, you probably didn’t think about who would be there and if the number of people in the crowd would overwhelm your child, create a social story to prepare your child for what was coming, or wonder specifically what food would be available to determine if you would have to pack your own food and I assume you didn’t carefully craft an exit strategy so that your other children would be least impacted, because that’s another one of our responsibilities, lessening the burden of difference for the siblings; creating an illusion that things are normal when everyone in the family is painfully aware that they are not.

Please understand that within the walls of our homes, our children are free to be who they are, special needs and all. And we are free to be their parents. The differences often melt away, and we feel the freedom to love our children for who they are, and focus less on who they’re not or what they can’t do, and take a rest from the grief. The problems arise when we leave our bubble, which made my friends decision to attend a function with her whole family that much more admirable.

I’m familiar with the feeling of the stares. When I’m feeding my four-year-old purée from a baby food jar because he never got the hang of pouches or grabbing his face with my open hand at his non verbal request or weathering a tantrum because Daniel Tiger stopped playing on my phone, I feel tense, waiting for someone to say something, practicing my shaky speech in my head, preparing for the moment I would launch into my emotional defense of my son. So while an outing to Panera or to a church picnic is pretty benign for most people, it’s really quite hard for us.

So the next time you notice a family, who may appear to have a member that’s different, remember what a brave choice it may have been for them to be in your presence. And the best thing you could do, other than the obvious refrain from staring, is to make our brave moments teachable moments for your children. Teach them kindness, grace, and acceptance. Talk with them in the car on the way home about how some children have challenges but it makes them no less. Help them to see what a gift it is to celebrate difference. Show them how great it would be to befriend our children. And if you can do just one of those things, you will be making a significant difference in the world for everyone and no longer will it be our responsibility to educate the masses. We can enjoy more spaces outside of our homes knowing that we won’t be met with stares and judgment, making our grieving process just a little easier and allowing our children the opportunity to participate without feeling like they are unwanted. Stop staring, accept difference boldly and demonstrate the grace that special needs families most desperately need, and allow us the space to be brave.

 

Hard Things

The night before I went into labor with our third baby, I was feeling restless and wrote a draft blog post about facing challenges and doing things previously thought impossible. If someone had told me years ago that I would have a child with special needs and a rare genetic disorder with no cure, and known deaths among children that share the diagnosis, I would have never thought I was capable of enduring such a thing. Yet here we are, and somehow God has conditioned me to handle the bends in the road, and equip me for the dark times that we face. So when I began to consider how we would bring our next family member into the world, I thought about delivering naturally, and how this was also something that I surely was incapable of doing. And in addition to this challenge, I was also thinking of my family and all that they have had to endure in the past few months.

My grandmother’s health has dramatically declined following a cancer diagnosis which began to reveal itself after she collapsed at my sister’s college graduation in May. The picture below was taken an hour before. I have watched my parents and sister rise, turning into patient, selfless care givers, providing round the clock, direct care in their home. My mom turned their dining room into Grammie’s room equipped with her hospital bed and curtains for privacy. My dad wakes at night to administer medication. They have been researching and preparing meals to help her fight her cancer and have been diligently providing personal care each day and night while she tries to regain her strength for more chemotherapy. If you would have told my parents and sister that in a few short months their lives would be turned upside down as they weathered this cancer storm with Grammie, I’m fairly certain their reaction would have been similar to mine when I think about facing the road of special needs, but they are powering through and despite the ever changing challenges of their present landscape they have risen to the occasion and provided a level of care that can only be admired.

 

 

People have said to me, “I don’t know how you do what you do with Mark”, and other than just doing it because I see no other alternatives, I see now where I get it. We rise, and we love, period. And this leads me to think about a mantra from one of my birth podcasts, “you can do hard things”.  

I wasn’t entirely happy with the blog post I had started, shelved it and went to bed. I then woke up at 4 am in preterm labor facing the unknown, and just like usual I took full responsibility for going into labor too early, not even considering that perhaps this could be a good thing.

I’m pretty good at blaming myself. I’ve really perfected that art over the years. As we embarked into the special needs world, I enrolled Mark and our family in as many research studies as possible, and like many of Mark’s clinical assessments and evaluations, these opportunities usually involved in depth questioning regarding my pregnancy and delivery of Mark. I even did a two-hour interview just about everything I did, ate and experienced while carrying him. I have relived it so many times, scrutinizing every decision. Each time I would answer a question like medications I took or interventions I had, I wondered what it meant. Whatever it indicated, my assumption was that it was clearly bad, and obviously my fault. 

So when we began talking about having another baby I spent an entire year trying to be as healthy as possible keeping these types of evaluations in the back of my mind and trying to maintain my tight grip on control. 

I found a nutritionist that specialized in treating neurodevelopmental disorders in children with autism and prevention in pregnancy. I did a number of tests that drove a tailored supplement and nutrition plan in anticipation of a future pregnancy. I bought a pill suitcase and began taking over 15 capsules of vitamins and supplements per day. I tried to stick with whole foods, including lots of vegetables and fruits. I stopped using conventional deodorant and switched to using a salt rock.  I drank out of glass containers. I changed all of our cleaning products over to natural alternatives. I had my hair tested for metals and toxins and then began using magnesium baths to detox.

Every new autism study that provided a clue at a correlation prompted action from me. I skipped the flu shot. Took extra Vitamin D. And when I did become pregnant I avoided every intervention possible. I didn’t want ultrasounds or extra Doppler exposure. I turned down all vaccines and began exploring options for natural child birth. I enrolled us in a hypnobirthing class and felt a little sheepish that I was a third-time mama taking a class that’s clearly designed for couples expecting their first. But I was determined to bring our baby into the world with as little intervention as possible so that if ever we end up on a similar journey as we did with Mark, I could answer “no” to those questions and alleviate the tremendous guilt I’ve carried around that I did something to cause Mark’s problems. 

I realize now that the PTSD that is so common among parents of children with special needs was coloring my judgment and fueling my neurotic efforts. Mark was born with a genetic condition that was not inherited from us. I knew this, yet despite the science behind it, and the fact that I tell other mothers on a regular basis that their child’s diagnosis is not their fault, I still felt narcissistically responsible. 

So when our son Luke made it abundantly clear that he was coming into the world five weeks early, my anxiety kicked in and I felt so upset that despite all of my best efforts this baby was going to be early, setting him up for possible delays and potentially other life threatening problems. The number one question I am asked on a developmental questionnaire pertains to the gestational age. I would now have to check the premature box.

Once we determined that my labor could not be stopped, I gave in and began employing all of my hypnobirthing techniques. I closed my eyes and breathed through each powerful surge and after many hours of slow, uncertain labor, I began to panic. I told Ike that I couldn’t do it. I was shaking, feeling less confident as I worried about our now preemie baby. The special nursery bed was set up. The neonatologist was called. I was overwhelmed. It was too hard. Ike encouraged me, reminding me that this is what we worked for, and the reason I made him spend several Sunday afternoons in a yoga studio watching natural child births, and ultimately what I had wanted. Within minutes Luke was born.

 

 

After he was placed on my chest, our midwife pulled up the umbilical cord to show us this fat, tight true knot in the cord. She said it was divine intervention that he came this early. I later Googled this and words like restricted growth and still borns popped up. It became clear that had he gone to term the outcome may have been much grimmer. 

 

 

When we returned home, I met our nurse we hired to encapsulate my placenta. (I’m aware of how controversial this is but I did my research and felt like it was a good choice for me).  The first thing she said was “did you see that true knot? I saw it and how thin the cord was on the one side and said a prayer of thanks”. 

 

 

How loud does God have to be for me to hear Him? This wasn’t about me, or about what I did or didn’t do.

 

All of my hippy dippy crunchy granola shenanigans couldn’t get in the way of God’s perfect plan.

 

Nothing was anyone’s fault, it was God’s will. Luke’s plan unfolded the way it was intended and so has Mark’s, genetic mutation and all. No mistakes. This is part of their and our journey.  

I watch Mark do hard things every day, and he has inspired me to realize that I can do hard things, like natural childbirth, and having the strength to be his mother and advocate, and so can my family in their intimate care for my grandmother. We rise and we do so because of God’s goodness and grace.

 

The Rules

On my way home I pass two houses and I often look to see what toys are in the yard. I don’t know these families but they have little boys that are the same age as Mark. I discovered this when Mark was around one and we had just moved into our house. I would see their kids toddling around when Mark couldn’t walk. As I drive past their homes now I’m always interested to see what they’re into, big wheels, slip n slide, ride on tractors,  all things that aren’t part of our repertoire but that I wish would be. It always stings a little but what hit me this week was watching one of the little boys ride on the lap of his dad on the lawn mower. That could never happen. Not according to the rules that have begun to form and solidify in our house. 

In the past six to nine months we’ve slowly grown to follow a set of strict, frustrating rules to keep the boat from being rocked.

If we go to Panera, we must sit in certain places, with Mark in his seat on the end of the table watching Daniel Tiger on my phone. 

If we go grocery shopping, it must be to Wegmans, as a family. 

If we go to his school, we must return home on our usual route and may not deviate by even one exit. 

Going someplace new? Expect a meltdown. 

New therapist? Tears.

Stopping at the mailbox on the way out of our lane? Song singing must commence in order to prevent an unraveling moment. 

Fireworks? Family vacation to the beach? An afternoon at the pool? Nope, nope, nope. 

Unexpected stop for gas? Expect screaming. Need to go to the post office? Or run in to pick up pizza? Good luck, comrade. 

So this week when we had to go from his school in Odenton to downtown Baltimore for his lab work appointment this meant complete screaming, for the entire 35-minute car ride. 

Life is messy. As much as we try to stick to routines, it’s impossible to do everything the same and it’s not good for anyone in the family, including Mark. Yet we know that to keep the peace it’s what we strive to achieve. We dread unexpected and new experiences because we know that they will confuse, frustrate and frighten Mark. 

It broke my heart to leave him home from our family trip to the aquarium last month but I knew that it was highly likely to upset him and Jillian wouldn’t be able to experience it. As we gear up to attend the FamilieSCN2A conference in Delaware next week, which will require an overnight stay in an unfamiliar space, I am incredibly anxious. New roads, new state, new gas stations along the way, many places and buildings with which he’s never been.  I can only imagine how frightening this is going to be for him. 

We recently had an appointment with a Developmental Optometrist who explained that Mark isn’t able to use his vision properly. He can see, but the images he’s receiving, his brain isn’t interpreting the way it should. So when he’s in a new space, he’s frantically trying to touch everything, and take it all to understand it. What this looks like is stim behavior, pacing and running back and forth between doorways and furniture, but the doctor believes that Mark is creating a mental map to better understand where he is in space. We see a lot of truth to this and as we work with our behavior therapy team and new IEP team for school this fall we will definitely be taking this into consideration.

But we are where we are, and we’ve slowly become so boxed in that I didn’t realize how cornered we were until I saw that little boy riding around on the tractor with his dad. That could never happen, not right now at least. 

Social stories and video modeling, along with practice have become how we slowly navigate new and scary things but it’s a lot of work to prepare him for a world that he can’t understand and I often feel like I’m not up for the challenge.

As I stood in the lab room this week while the medical staff struggled to get Mark to sit still enough to get his blood to draw, as each failed attempt escalated the screaming, sweating and gagging, I stood against the door and I could feel my heart racing. I quickly sent a text to my mom to tell her what was happening and to ask her to pray. Ike and I were both silently pleading that God would allow them to get his blood to draw so that we could bolt from the hospital and then I suddenly burst into tears, which prompted a nurse to remove me from the room. I have watched my little boy have his broken bones set, be placed under anesthesia, held him while he’s undergone so many uncomfortable procedures while he screamed. I would often hold his face and sing into his ears as I hoped I could make it through and calm him, but not this day. This day the enormity and gravity of our uphill challenge, and perhaps my pregnancy hormones took over and crumbled me. Nurses asked me if this was my first time watching him give a blood sample. No, I said quietly as I continued to plead in silent prayer that the screaming would stop. Eventually, it did and my sweet boy emerged sweaty, tired and bruised from all of the botched attempts, which were of no fault of the staff, according to the nurses, they had their best in that room. Mark was just incapable of not panicking and flailing. Thanks to an angel named Ali from the Child Life department the torture ended when she suggested a comfort hold that finally worked. And it’s moments and people like that who shift me to focus on how God is moving in the midst of the chaos and discouragement. 

I have to remember that because if I start to think about the rules, the boxed in feeling and the giant autism/genetic mutation mountain in front of us, I will end up in a tearful heap just like several nurses and patient families found me. 

So I am choosing to pick my head up and warrior on. We will prep him for his EEG appointment in a few weeks, make our bailout plan for our trip to Delaware and trust in the Lord that He will provide us with the ability to care for him, send us people along the journey to support him, and for us love him and accept him how he is, even if that means beach trips are out and spur of the moment adventures have to be rethought. 

I was reminded this week by a dear friend that it’s is an incredible responsibility to make decisions for someone who can’t adequately communicate. And yet Ike is right, it’s also an honor to care for him. When not in fight or flight mode he’s the sweetest little boy, with his sparkling blue eyes and an adorable dimple that displays during every smile and giggle, which, thankfully, are quite frequent. We may have lots of rules that other families may not have, but we have the privilege of loving and caring for the most joyful soul we’ve ever met.