December 2018 – Mighty and the Bean

We Pretend

By Angie Auldridge on December 30, 2018

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

By Angie Auldridge on December 19, 2018

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

By Angie Auldridge on December 13, 2018

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. 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 – 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 – 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

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

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

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

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

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

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

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

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.

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