Series submitted for Memoir Writing class at Rice University’s Glasscock School of Continuing Studies

The sun is shining on a beautiful spring day in Alaska as we travel north on the Parks Highway in our mid-size rental car towards the quaint town of Talkeetna for lunch. Excitement, tinged with child-like giddiness, infused our conversation’s tone. Earlier that morning, we’d arrived at a foster home where toddler twin boys had been placed seven months prior. Children’s Services was looking for an adoptive family for these two and we’d been selected, out of hundreds of other homes I was certain. Twin boys! Matching clothes!! Double stroller! Fun times two!

West of Home, South of Sanity

Denali, Athabascan for “The High One,” rose before us like a kind greeter at church whispering, “Good morning” as you arrive late and slip into the last pew after service has begun. Your greeter isn’t judging your tardiness and doesn’t ask why. She simply smiles warmly, the kind of smile that leaves the upturned corners of her mouth and spreads to her twinkling eyes. It’s the type of smile that allows you to ignore why you were late in the first place. The High One was smiling upon us, brightly lit by the sun.

As I basked in the mountain view’s majesty and temporarily abandoned my reality, small sounds emerged from the back seat that gripped my throat. It was a feeling reminiscent of hearing a puking cat on your bed in the middle of the night. Twisting my entire body to the left, my eyes left the gorgeous scene and I was faced with a vile river of partially chewed pretzels and stomach contents from the twin toddlers. The river flowed over their clothes, their carseats, the elastic bands that harnessed their hearing aides to their shirts. It even found entrance into the fabric hand braces they wore on one hand to counter effect muscle weakness and help encourage an open palm. This was reality refusing to be abandoned and challenging me in ways that only life with two medically complicated toddlers can. Twin boys! Vomit clothes!! Double carseats! Clean up times two!

My husband guides the mid-size to the side of the highway and we begin the arduous task. I’m not surprised to discover the foster mother only sent one extra shirt in the enormous diaper bag. Obviously, air takes priority in packaging, just like when you open a bag of what looks like is full of potato chips, only to peek in and find THREE.

Thankfully, the night before, when my excitement of twins wasn’t covered in wretched slime, I’d gone to the mall and bought clothes. The mall is always the first stop right off the plane and after securing a rental car for us Kodiak Islanders who reach the civilized world of all that is Anchorage. We stock up on essentials our remote island at the beginning of the Aleutian Chain doesn’t have like non-Wal-Mart clothes and Cinnabon.

Changing the twins was like a circus act. These two year olds couldn’t stand without assistance, much less walk. They didn’t understand basic language and clearly couldn’t communicate with us. It was as though we had two-month-old babies in toddler bodies and the enormity of our undertaking hit me hard. Sitting on the ground and holding these two shirtless boys, I began to cry while my husband flung rancid pretzel pieces out of cartseats.

“These were organic, gluten-free pretzels, Michael! What kind of toddler doesn’t eat pretzels?” I wailed. I was already raising three children, the oldest had just turned 11 and they’d all eaten pretzels at 2 years of age!

“Obviously these kids! God dammit!” Michael bellowed as flying vomit circled around and landed on his jeans.

“I can’t do this. You saw them yesterday at the foster home! I was hoping it was just an off day for them or maybe the foster parents had taught them to behave a certain way in the home, but they couldn’t walk. They can’t communicate, they both have hearing loss and that list of medical diagnoses we thought was exaggerated….. I don’t know what in the hell microcephaly is and I certainly don’t know what cerebral palsy means long-term. And now they can’t eat pretzels! What the fuck am I supposed to feed them? This is just too much!” I groan with frustration as I try to wipe tears and snot on my sleeve without the use of hands, which are griping squirming bodies that don’t sit up well.

“Carey, look, let’s go have lunch and see what tomorrow brings. You know when we get them home and can do things our way, it will be better. That’s the way it was when brought Jess home two years ago, so this adoption will be the same.”

I let out a deep sigh and transitioned myself unknowingly from all-around PTA soccer mom to mom of special needs children. Gone would be my days of themed birthday parties and afternoons volunteering in classrooms after work. Gone would be my work in seafood research. Gone would be the perfect Halloween costumes, carefree family dinners, easy outings to the movies and quick trips to the commissary. Of course, I was completely unaware at that moment on the side of the Parks Highway, stuffing smelly clothes into a near empty oversized diaper bag, just how much our lives were about to change.

West of Home, South of Sanity

Two days later we boarded and Era Dash 8 with our twins, accompanied by the foster parents to theoretically ease the boys’ transition, and introduced our toddlers to flying. They were excited, but also confused and scared, not unlike myself and my husband. Landing in Kodiak about an hour later, we were welcomed home by our three children, Michael’s mom and our support network of friends.

West of Home, South of Sanity

Life as we knew it was forever altered that day and we were completely and utterly unprepared as we entered into six months of pure and unforeseeable hell.

Disclaimer: In no way does our dental experience extend to all dental experiences, nor should it be used to stereotype anyone in the dental profession or anyone parenting a special needs child. This is solely my experience and my story.

Circus Vorholt on iphone

The biannual dental walk of shame. Dun dun dun dun.

Imagine, if you will, being ushered into a small, barely lit room with twin boys. There is a table for one patient to lie on, except you have two patients. There are two chairs, which the dentist/dental hygienist/assistant will occupy. You must sit on the floor for the entire visit with patient #2 who is trying to watch the movie on the ceiling television and positioning himself just under one of the occupied chairs on wheels. While sitting on the floor, you will be bombarded by critical statements of your parenting abilities, specifically in how well you clean your almost 12 year old twins’ teeth. The moment of gratitude comes when you realize the lack of light in the room camouflages one son’s urinated-in pants and your constant eye rolls.

Dental visits for the twins fog my emotions and dull my brain’s electrical flow. It’s a bizzare reaction considering both boys are quite cooperative with the whole process and all I need to do is simply be present in the room. I expend no physical energy, which is probably why I don’t feel tired after this type of appointment, just mentally drained.

“Nick has poor hygiene with an overabundance of plaque and staining along with moderate gum bleeding.”

Circus Vorholt by Carey Anne Photography

Mamiya C330 / Kodiak Portra 400 / #filmisnotdead

I try to prepare myself for days leading up to the walk of shame. I remind the voices in my head that are screaming, “The hygentist will make her ‘gross’ face behind her protective mask and you’ll still see it!” that I’ll look elsewhere when this happens. Maybe I’ll pull out my phone and pretend to be one of those park moms who doesn’t interact with her kid while he dangles from a loose monkey bar. Wait, do parks even have monkey bars anymore? Or did some mom who works as a dental hygentist demand they be deemed hazardous and removed due to poor safety with moderate bleeding?

Honestly, there is no significant difference in the amount of questions or instructions delivered to me for dental appointments compared to ALL OTHER DOCTOR VISITS (ie. pediatrician, ophthalmologist, neurologist, physical therapy, speech therapy, occupational therapy, urology, audiology, ENT, nutritionist, GI and all associated technicians and procedural staff interactions).

“He’s walking fairly well. Are you putting his brace on as soon as he wakes up in the morning? He should be wearing it all day until he goes to bed.”

“His eyes are straightening fine. Is he wearing his glasses every day? He should be wearing them all day until he goes to bed.”

“His hearing has changed and his ears look clear. Are you putting his hearing aid in as soon as he wakes up? He should be wearing it all day until he goes to bed.”

“His hearing has changed and his ears are infected. Are you putting his hearing aid in each day? You should refrain from having him wear it until this infection clears and use these drops in both ears twice a day.”

“His weight has decreased a little. Are you giving him 6-7 cans of Pediasure a day? You should try to get more in him even if it means you are monitoring a feeding pump 24/7.”

Circus Vorholt by Carey Anne Photography

Mamiya C330 / Kodiak Portra 400 / #filmisnotdead

So why is a dental visit any different?

“Oh, buddy, your teeth have lots of sugar bugs on them. His teeth have poor hygiene, Mom. Are you brushing and flossing his teeth twice a day? You should be doing that.”

Yes, I should. I should also refrain from telling you that my child has no freaking clue what sugar bugs are, because it’s abstract and something he WILL NEVER comprehend. As in NEVER EVER, no matter what baby voice you use to convey your useless message. As in HE WILL NEVER EVER BRUSH HIS TEETH TO YOUR STANDARDS, because he is incapable of understanding it’s importance.

I’m momentarily tempted to tell her the boy on her table she’s speaking to behind a face mask CANNOT SEE HER LIPS MOVING (Hello, they are deaf and hard of hearing and are distracted by your movie on a ceiling, so good luck making your point!). I’m also tempted to explain the little boy on her table she’s speaking to in baby voices and language has B.O. and pubic hair. Instead, I imagine her reaction to be similar to mine the morning I discovered the pubic hair, pre-coffee. I decide my disclosure restraint is my olive branch extension, because trauma comes in many forms.

“I have one child who is four, so I know what a hassle it can be to get their teeth clean, but you seem like a woman who can manage her time well and make sure this happens.”

This, of course, is said with a condescending tone. I have to put my hands under my butt, because 1) the hard floor I’m sitting on is no longer comfortable and 2) as a prevention tactic from reaching over to Miss I-Have-One-Normal-Child’s throat and strangling her.

Sorry, but my reality and your fantasy world aren’t compatible. Besides, isn’t this why we come here twice a year? For you to clean their teeth? If I was doing such a stellar job, there’d be no reason for me to sit on this cold, hard floor for two hours, sans my coffee in a spill-proof mug you forced me to leave at your front counter, interpreting everything they tell you about the ceiling movie. Speaking of the ceiling movie, Matt, who can’t seem to remember to brush his back teeth each day, even though he’s reminded over and over and over and over again, refers to dental appointments as, “Den-tiss clean teeth, take picture and watch DVD movie.” Yes, that’s right. The twice a freaking year visit has a stronghold on their memory banks, exact location and entire process including when to spray water in their mouths, but the irony that they refuse to memorize basic teeth brushing methods makes my eyes burn and twitch.

One of my favorite parts of these visits is when the dentist comes in to examine their now clean teeth and the hygenist assistant rattles off their medical histories and diagnoses. “He has ADHD, micro-kep-a-ly and ke-reb-ral pal-sy.” I watch as the dentist sets her jaw and hisses slowly the correct pronunciations for microcephaly and cerebral palsy. I try not to chuckle too loud, humored that for a brief minute someone besides me in this small, dark room is getting the verbal beat down. My reprieve is short lived as the dentist, without fail, turns to me with mask-covered resting bitch face and delivers news I don’t care to hear.

“Have we discussed ortho?” Yes, every time I’ve been here for the past two years…..

“Have you taken them for a consult yet?” I shake my head, reply no and smile hoping the mixed body language I’m throwing her way will distract continuance.

“Their front teeth are severely rotated and it’s time for intervention.” Yes, I see those teeth every single day and I’d rather not commit them to memory, thanks. Besides, we are military and due for a PCS next summer, so I don’t want to start treatment here and then need to finish at the next location.

“You could at least get phase one done before you move.” You could at least be a mindreader and see all that I envision happening with front-teeth braces: Sliced, raw and bloody lips from wrestling one another; Nick with a screwdriver in front of a mirror trying to dismantle brackets; Matt, my kid who is super sensitive to all things oral, with fingers in his mouth complaining of irritation as metal flies to the floor.

For now, I’m unwilling to add ortho appointments for broken brackets to my to-do list. Besides, it’s enough with the one who IS in braces and has no excuse for not following the no-candy rules and telling us when wires are loose, etc. Unfortunately, she prefers playing victim and getting attention from strangers who then turn to me with shocked expressions by my lack of knowledge that a rogue wire has been digging into her gums for weeks…… Oh, please people. Take a number and get at the back of that ridiculously long line of outsiders waiting to tell me what a horrible mom I am.

The paradox that the dentist who has scolded me for improper care of the boys’ teeth is now encouraging me to add to the arduous cleaning routine sharp pieces of metal that further complicate adequate plaque removal flows through my neurons and synapses. It becomes the cherry on top to this cold, dental sundae layered with mixed emotions, shaming techniques, and sprinkled with rainbow colored bits of actual assistance in the form of teeth cleaning.

As the boys and I near the end of our visit and walk to our car, I take an emotional temperature reading. Not surprisingly, it’s the same feeling I always have when leaving their dental appointments: frustration, drained brain, guilt, confusion, anger, disappointment.

Circus Vorholt by Carey Anne Photography

Mamiya C330 / Kodiak Portra 400 / #filmisnotdead

I have almost 20 years of experience with my five children, so I know all about medical visits. I’ve witnessed first-hand the evolution that is a doctor’s appointment in various settings and environments. In 2007, I flew with Matt from Kodiak, Alaska to Seattle, Washington for a cochlear implant surgery, where a device was seated into his SKULL as an OUTPATIENT before being released to a hotel room for the night. The following day, we were on our second plane of the day heading for our Alaskan island when Matt broke with fever. Our approach into Kodiak was unsuccessful due to weather and an hour later we found ourselves back in Anchorage renting a car at midnight and checking into a hotel to wait 10 hours to attempt flying home again. Allow me to recap this medical visit: Five planes total, two hotel rooms in two different states, a rental car, multiple doctors and nurses, one cochlear implant in a skull and one post-surgery feverish child.

My aversion to the complicated feelings from a dental visit is so enormous that I would take a multi-state, multi-plane, cochlear implant surgery experience over a biannual dental walk of shame!

Thankfully, my aversion can be satisfied with something much less involved: tasking my husband, my knight in shining armor, to tackle the next dental appointment. Tag, Honey! You’re it!

  • February 27, 2015 - 2:44 pm

    Jenika - Thank you for opening the door to your heart a crack and allowing us to peek into what that narrow shaft of light can show us…there are so many frustrations and griefs that are impossible to share, thank you for trying to help “the rest of us” see afresh why we should refrain from judgment and negativity. I admire your courage and how hard you’re working, and admire how you’re able to speak of these things with some humor even though it’s difficult. You’re a great mama, kind heart, and sending love to you as you carry on caring for these precious people.ReplyCancel

    • April 6, 2015 - 6:22 am

      Carey - Thank you, Jenika!ReplyCancel

New York City b&w film by Carey Anne Photography

This past summer my freshly 16 year old daughter and I spent a week in New York City soaking in Broadway shows and living the big city life. We stayed in an Airbnb apartment on the Upper West Side of Manhattan with the most fabulous of all hosts, Miss Linda. She calls herself a writer, humorist and human potential councilor, but she’s also an enthusiastic woman who adored late night and early morning exchanges about the day’s events and shows.

Before venturing out to join the subway hustle and bustle one morning, I left my daughter and Miss Linda in the kitchen sharing favorite Broadway star stories as I prepared myself for public presentation. Through the shower stream flowing over my ears, I could hear their excited voices undulating with joy. This was an experience unattainable during hotel stays. Before we left each morning, Miss Linda would quiz our memories of her directions to be sure we would not get lost.

New York City b&w film by Carey Anne Photography

Tackling the NYC energy by it’s horns, my daughter and I navigated subway trains and traffic-filled streets with ease. We apparently were so fluent in all things Manhattan that tourists were stopping US to ask for directions! It was beautiful! It was delightful!

It was also a trip with a teenager. One whose nickname is Drama Mama. One whose neck would fit nicely between my two hands. One who needed daily reminders that there were TWO people on this trip.

New York City b&w film by Carey Anne Photography

Admittedly, I love this particular teenager with all of my heart and I understand she is not perfect, nor am I. With complete love, and as a means of maintaining relative calm, I found myself jotting down notes during the day of lessons learned about behavior and how best to wade through hormones and teen angst without harming this particular teen. I offer you my top five tips from those life-saving notes for whenever you might find yourself in NYC with a teen and want to avoid actions that might land you in trouble.

New York City b&w film by Carey Anne Photography

5 Tips for Travels to NYC with a Teenager & Avoiding Jail

1. Avert engaging your teen’s desire to throw a fit on a crowded subway train while traveling to destinations NOT on her to-do list.

Simply pretend she doesn’t belong to you and stay focused on your intended journey. When the grumpy, complaining teen follows you up stairs to the city street, try to walk faster than her, keeping your ears out of direct line with the sound waves emitting from her mouth, the same mouth you fantasize slapping.

You are welcome to slow your walk when your teens runs to your side and excitingly shares that she just bumped arms with Nat Wolff before telling her, “You are welcome. Had we not come to this place that I wanted to visit, that would not have happened to you.” Remember to smile and refrain from shaking the life out of your teen.

PRO TIP: Be sure to remind your teen that the world does not revolve around her sole wishes.

New York City b&w film by Carey Anne Photography

2. Employ your long list of bribes for times your teen isn’t interested in leaving your AirBnB apartment for real NYC pizza. Across the Brooklyn Bridge. Late at night. By foot.

When your teen balks halfway through your walk on the Brooklyn Bridge, continue to move forward. When she shares her distrust in your navigation skills after crossing the bridge into Brooklyn, do not question your blinking blue dot on GPS. Simply continue to follow the path on your phone’s screen.

When your teen grumbles about standing in line outside for ten minutes for a table in Grimaldi’s, remain silent and smile. Ignore her protests as you enter the restaurant and are led to your table, because you know your teen’s mood will shift once she’s eaten. When your teen rejoices the pizza she has bitten into is so good she wants to marry it, feel free to shout, “I told you so!”

PRO TIP: When taking the subway from Brooklyn to Manhattan and becoming confused at the Fulton St. stop of which train you need for W 95th St., breathe through your panic when you realize your train choice was incorrect. Do not notify your teen that you are both headed back to Brooklyn. Under the water that frightens her. Just pretend you knew exactly where you wanted to go.

When your teen clues in to the mistake once you arrive back at the High St. stop inBrooklyn, give her a choice of taking the A train again under the water or walking back across the bridge. This choice will help your teen feel as though she has some control of the situation.

New York City b&w film by Carey Anne Photography

3. When your teen complains about you not making advance purchases for the 30,000 Broadway shows she wants to see, calmly demonstrate how lucky one can be when inquiring for the least expensive tickets in person at individual theater ticket booths.

It really is a win-win for both of you. Your teen can see all of the theaters in daylight while practicing her communication skills and you can pay less per ticket than what was advertised online.

PRO TIP: Each time your teen proclaims her love for you for buying the tickets, you can smile knowing you’re arming yourself with more bribes.

New York City b&w film by Carey Anne Photography

4. Make good use of your resources for long playbill signing lines by finding free charging stations while your teen chats with new friends in the “see this barricade? This is where you stand in line!” formations.

The amount of time you have to recharge your electronc, hand-held, mini digital lifeline can vary, but be certain if the Broadway show involves a famous person, James Franco for example, you can get an almost full battery.

Simply move away from the ridiculous crowds of fans, gawkers, police and traffic rubberneckers (all people whose time Mr. Franco clearly cares nothing about, evidenced by the time between show’s end and his “disguised” appearance with hat and sunglasses) and search for electric outlets. They’ll be visible, most likely without a protective safety cover. Stand as far away as possible from the outlet while extending only one arm and your charger’s plug loosely held in two fingers. This distance will hopefully reduce exposure from the flying sparks on initial contact. Hey, no one ever said free was pretty or safe!

PRO TIP: Offer to hold all of your bags of take-out food, so your teen will have both hands free for holding pen and playbill. And so you have something to snack on. Snacking during the charge period will keep your body strong and resistant to minor electric shocks when unplugging and you will feel less grumpy two hours later when your teen finally rejoins you with Mr. Franco’s scribble that is supposed to be his autograph.

New York City b&w film by Carey Anne Photography

5. When your teen scoffs at your request for her to use your phone for a selfie of the two of you with Daniel Radcliffe in the playbill line by declaring, “There’s not room for THREE OF US in the shot!”, remember to breathe.

It’s not helpful fantasizing hauling your teen by her hair to the top of the Empire State Building and tossing her over. Even if it IS your 40th BIRTHDAY and you’re being denied a star selfie by a selfish little shit. Instead, shuffle away and call your husband to vent and then have a good chuckle when said movie star leaves the scene just shy of your teen’s place in line.

PRO TIP: Be sure to remind your teen that karma is a bitch and she can try again tomorrow to be less selfish.

  New York City b&w film by Carey Anne Photography

Obviously these tips can be applied to any situation you find yourself in with a disgruntled teen in NYC, so use accordingly. Feel free to modify as needed for your personal parenting experiment. Isn’t that what parenting is at it’s core anyway? An experiment?

We take our hypothesis that having a child will be terrific. Our background research validates this idea and we choose our designs and methods with conviction, trying not to feel discouraged when we realize those designs and methods require constant tweaking. Our data collection spans a lifetime as we test our hypothesis in various environments (home, store, restaurant, NYC, etc). We realize our results become unpredictable as our child grows and matures. Our statistical analysis can be skewed depending on the mood and day, but knowing we are looking for a small sampling error, we increase our power of N with more environmental samples before reaching a conclusion.

In other words, my teen and I need to go back to NYC one day soon and run this experiment again to see if we get the same results. Something tells me, however, I’ll reach the same conclusion: having a child is terrific. Even if your child is a teen in NYC driving you to insanity and scrambling for ways to avoid jail.

All images taken on Nikon F100/Tri-X 400. Developed and scanned by Indie Film Lab.

The piercing continuous alarm disrupts my thoughts as a forkful of spinach omelet travels from my breakfast plate to my mouth. Nick is awake and reprogramming his feeding pump, which means there’s probably a full bag of milk still hanging from the night before, it’s flow prevented from a pinched tube or a disabled pump. I sigh heavily, forgetting to first take in a breath of calm. I sit momentarily trying to settle the “I hate my life” gremlin voices now punctuating my brain and activating the cortisol that begins coursing through my bloodstream.

A classmate in my Compassionate Cultivation Training (CCT) this past week offered a Thích Nhất Hạnh mantra that I found promising to combat my gremlins, “Breathing in, I calm body and mind. Breathing out, I smile.” I take a deep, calming breath before undertaking my smiling exhale, but it comes out in a huff instead of a long, winding hiss, which my husband interprets as frustration.

“Do you want me to go up?” he asks.

“No, I’m going. You finish your breakfast, so you’re on time for work. I’ve got this.” I push my chair away from the counter of nourishing food and newspaper and begin my trek of torture.

I know it’s not healthy for my thoughts relating to some of my children (those that have me grinding my teeth before 7AM) to be so grim, which is why I decided to participate in CCT. I don’t enjoy the thunderstorms of frustration and anger that overtake my emotions each morning. Or afternoon. Or evening. I want to be calm in the face of challenge. I want to be compassionate.

CCT is meditation based, so I imagined my classmates would all be women who sat with straight spines. They’d be my ultimate meditative yoga superhero: women whose pores ooze calming lavender and whose blood seems to have been replaced with chamomile tea. Their voices are soft and soothing, even when faced with twin special needs boys and a child with reactive attachment disorder. Their demeanor mimics angels with white gowns and extravagant, yet functional, feathered wings. It’s as though any passerby can easily visualize these earthly angels’ brilliantly shining halos.

THIS is the inner calm I want to my match my outer calm. THIS is what I want, no ferociously need, to emulate.

It turns out my ultimate meditative yoga superhero doesn’t need CCT, so on our first night of class, I find myself surrounded by real people, people like ME. Truth be told, however, I was the only attendee who used the following introduction: “Hi, my name is Carey. My husband and I have five children, the three youngest are special needs foster/adopt. Our second oldest will soon be heading to college and I realized I need new coping tools for my toolbox when there are only three children remaining at home.”

Our homework for week one was to practice meditation 15 minutes per day. Completely doable in some worlds, but I wasn’t sure in mine. Along with my silent vow to get serious about this important practice, I included permission to engage in modifications as needed. More specifically, I would allow myself to practice modified meditation during my most challenging hours: school morning routine.

As I climb the stairs to the boys’ room, I inhale deeply. Breathe in calm. On the exhale, I am suspicious of what just entered my lungs, because it feels like air, not calm. Again, I inhale deeply as I walk toward loud noises emanating from little boy mouths. Nope, definitely not calm on that breath in. It’s odorous…… like pungent odors from a full cat litter box. My exhale becomes a yell to the child who is responsible for removing those pungent odors. “Em! Clean your cat’s litter box before you leave this morning!”

Inhale, open the bedroom door. The expected intake of calm is overpowered by urine molecules. Exhale, “Time to get up and go downstairs to throw your pull-up away.”

My CCT instructor emphasizes focus on the breath during class meditation, but she’s also teaching us how to listen compassionately. For example, in week two we arranged ourselves in small groups and took turns sharing what the previous week’s meditation practice looked like in our lives and how it made us feel. The small group listeners must not speak or offer advice, but can say, “Thank you for sharing” when a group member finishes their account. My small group members, two young college men and a single, child-less woman, were a bit stunned when I explained my practice implemented during morning routine and how I’d been feeling this covert-NAVY SEAL-type of calmness.

“I’ve given my boys an ‘If This, Then That’ list of morning tasks to be completed. If they get dressed, eat, brush teeth and get ready for school with backpacks, they can have their Inno Tablets to play with until their bus arrives. A few days this past week they were successful without much persuasion on my part, but days where they’re resistant, I practice my breathing instead of becoming angry and engaged in their stubbornness. Just this morning, one son had technically earned his tablet, but he didn’t have a coat on and it’s pretty cold outdoors. Instead of telling him to put his coat on, I told him to stand outside with his tablet. I remained inside, in the warmth, and practiced breathing while I waited for him to realize what he needed. He came inside, said he needed a jacket and then got sidetracked with his tablet. So, I told him to go back outside and I began my breath focus again. He returned from the cold and immediately went to get his jacket on. I remained calm, focused on my breath and he used his problem solving skills to get his task completed.”

“Um, wow…. Thank you for sharing.”

My success rate with this latest attempt of morning tasks is as confounding as the twins’ medical diagnoses. Some days I am presented with a feisty child (aka Nick) who screams, regardless if I’m struggling to maintain calm or matching his decibel level. One morning I pointed to the kitchen white board as a visual reminder of numbered tasks while Nick refused to get dressed. As I made my way to retrieve his bribe (aka tablet) from it’s hidden location in my bedroom, at each corner I hear, “Click-click-click-click.” With his tongue, Nick was making car blinker sounds…. You know, just in case I was the one who needed a reminder to look first before going around a corner…..

Needless to say, he did not earn his tablet that morning.

Some mornings have been flawless with the boys, as though miracles can happen and the rough days were simple bad dreams. They don’t require any redirection or verbal reminders. They’re astonishingly on task and hold one another accountable until both have earned their tablets. Where I would practice my breathing and meditation on a challenging day, I find myself in shock on these good days, almost unable to catch my breath at times, because their cooperation is so foreign to my expectation.

west of home, south of sanity by Carey Anne Photography

Some mornings I’m confronted with an actor child (aka Nick) who sits lifeless in his chair, head tilted back, mouth fully agape, eyelids that barely refresh the eyeballs, gaze locked in on a kitchen light above his head. An occasional sigh finds it’s way out of his body, a sign that he is indeed still alive. An outsider might label this behavior as an absence seizure, but we know it’s not, because he can remain like this for 5-6 minutes at a time. This behavior is his refusal to do a task and it’s a ploy for attention. Just this morning, he sat like this for 3 minutes after I reminded him his next task was to brush his teeth. He echoed my statement and then went back to staring for an additional 3 minutes before speaking again. If you’re keeping count, that was a full SIX minutes of meditative breathing for me!

I certainly needed that brief respite, because when Nick realized he wasn’t gaining explosive energy from me, he jumped up and broke into several scenes from Sound of Music, including a segment with an air acoustic guitar. I suspect he hoped his entertainment would be distraction…… Breathe in calm. Breathe out inner smile, because an outer smile would signal my happiness with his diversion.

As Nick finally moves on to his task, a booming thud above my head warns me of Matt’s lack of progress. In less than 5 minutes, the bus will arrive, so I breathe in calm and gently prod my mind into quiet, blank space on the exhale. I need a prompt for Matt that isn’t a command or one of his morning routine tasks. My moment of mindfulness offers an idea and I enter his room explaining that it is now time for the light to be turned off as I flick the switch before turning around to proceed downstairs. Matt screams a few garbled statements laced with questions meant to engage me as he follows my path. A calm mom is no fun, apparently, so he’s upping his actions. He may be disappointed he was allowed to sit and play in his room for AN HOUR, but whether he’s making any connections to cause and effect isn’t clear.

As Matt reaches the bottom stair, yellow appears through the front door’s stained glass window and the sharp squeal of brakes can be heard. Nick is ready to go out the door with his backpack on after being ushered out of the bathroom where’s he’s stood and sang to himself in the mirror for 10 minutes instead of brushing his teeth. Matt, shoeless and jacket-less, is appalled when I place his shoes and backpack in his open arms as he yells, “MOM! WAIT!” Without a verbal word, I guide him out the door behind Nick. There is a little pleasure in the bus driver’s smirk and laughter. Breathe in calm, breathe out smile.

Sounds of feet furiously bounding down the stairs behind me, I take a second calming breath and turn around to greet my daughter with a smile. My calmness and smiles have been particularly off-putting to her these past two weeks, so much so that she no longer comes down for breakfast. In fact, I don’t see her until she’s walking out the door for school. This isn’t to say I do not hear her, however. Thankfully, my focus on MY breath has helped me tune out her tactics of standing outside her room to blow her nose and sniff forcefully in anticipation of making me angry. The amount of snot and sinus fluid sucking just this morning from that child would have left me light-headed and dizzy. Perhaps it had the same effect on her and this is why she’s late leaving the house for her bus. There’s no purpose in asking why she’s behind schedule, she won’t tell me anything truthful, so I breathe in calm and exhale a smile, “Have a great day at school, sweetie!”

Realizing the gremlin voices were quieted this morning each time I focused on my breathing and my sporadic, yet effective, moments of meditation were doable, I take one final, calming deep breath. On the long, soothing exhale, I smile and announce out loud to any lingering gremlins, “I’ve got this.”

 

This essay centers around our twin boys, whom we adopted at the age of 2. They suffer the effects of cytomegliovirus (brain damage, microcephaly, cerebral palsy, deafness, global developmental delays, severe intellectual disability, epilepsy) and early abuse and neglect.

My emotions are mixed as the end of holiday break creeps up. Having all five children home for the past two weeks, along with my husband who is on holiday routine and still recovering from foot surgery, has been challenging at times. I’m eager for hours of peace and quiet where I can accomplish tasks uninterrupted. I’m ready for a clean house that lasts longer than 30 minutes. I’m ready for my children to return to school.

What I am NOT pining for is the return of school morning hassles, or what the twins believe is Operation Crazy Mom.

West of Home, South of Sanity by Carey Anne Photography

Nikon D800, edited with VSCOcam

Our mornings consist of pull-ups, hearing aid check, cochlear implant devices (battery changes and programming), tube feeding, medicating, dirty clothes, getting dressed, breakfast, teeth brushing, pooping, shoes on and backpacks.

It also consists of screaming, which for Nick is more of a habitual utterance.

We’ve been participants for YEARS of refusals, stubbornness, upsets, games and general disruption when it comes to getting ready in the mornings. Yes, participants. I am clear that part of the problem is how we, as parents, approach the boys’ behavior and, honestly, it isn’t pretty, as I’m sure my neighbors can attest to. Frustration mounts before we’ve even reached their bedroom door as we hear these two monkeys jumping on beds and one another instead of taking off a leaking pull-up (Nick) and coming downstairs on their own. Opening the door to their room brings more letdown: urine-covered sheets, comforter and the three blankets that were added in the middle of the night by a child who also took off his pull-up and put on underwear; a half-full milk bag from a disabled feeding pump that little fingers reprogrammed; an electronic device taken from it’s hiding place downstairs without permission in the middle of the night. We never know what we’ll find and it can be exasperating. What is more exasperating is the continual shift of needed response.

What was successful last week in lame attempts to have them gain independence and prepare themselves for the day probably won’t work tomorrow, so we’re constantly revamping. And by revamping, I mean researching new ways on how to react. And by research I mean me reading from my library of parenting books at 4AM on what might make progress. Today’s research is brought to you by the book Positive Discipline A-Z: 1001 Solutions to Everyday Parenting Problems.

West of Home, South of Sanity by Carey Anne Photography

iPhone 5, edited with VSCOcam

Under Morning Hassles, they offer the following advice:

1. Set a deadline for morning chores. 

We’ve tried timers (“Where are the batteries? Who took the screws out and left this in pieces?”), chore charts with timer and bells (the pieces lasted five minutes and Nick, who enjoyed the bell sound, repeatedly reset his) and picture cards (apparently an open invitation to decorate with Sharpies).

Let’s get real for a second. Even with their brain damage and developmental delays, these boys know what is expected every morning. What they do not know is how we’ll respond to their stalling du jour, so it’s a daily game for them and one I feel I’ve lost each day as they head to their bus.

In Nick’s defense (like a teeny, tiny amount of defense), he does have cerebral palsy, so it takes him longer than a child his age to accomplish morning tasks. However, I’ve seen this boy outperform all my other children if it’s an activity he’s interested in. He’ll get those clothes on in seconds and moves lightning fast to hang with dad in the garage, go to a soccer game and go anywhere with older brother, Allen. Nick is quite capable, so we hold the bar high.

The authors of Positive Discipline also suggested a nonverbal reminder with advice point #1, so the child knows to get back to their morning routine/chores….. Does signing, “Clothes on NOW!!!!!” like a lunatic qualify?

West of Home, South of Sanity by Carey Anne Photography

Nikon F100, Portra 400, developed by Indie Film Lab

2. Spend your time taking care of your chores and do not nag or remind the kids about what they need to do. Let them experience the consequences of forgetting.

Obviously, this book wasn’t written for parents of children with severe special needs, but how many ways can I laugh at this suggestion? First of all, these boys don’t really care about natural consequences (darting in traffic, holding one another under water in the pool, body slamming one another from high surfaces, touching something hot). “Going to school in my pjs? Cool! No time to eat breakfast? Score!” Nick, especially, has inconsistent understanding of empathy and cause/effect.

I will admit to utilizing the “my chores” part of the advice with much success for self de-stressing. I particularly enjoy a loud vacuum cleaner for drowning out screams of a stubborn child who doesn’t want to put his shoes on by himself.

For the boys, consequences aren’t so much related to forgetting as they are to refusing. We attempted the natural consequence of Nick refusing to put on his shoes and sent him out the door one day to the bus with said shoes in hand. Our bus driver was shocked and recited bus rules that thankfully included boarding the bus without shoes as long as the child had on socks. Nick didn’t care for walking to the bus in socks at all and does better with not complaining. As much.

As much as I’d like to follow the authors’ advice on not nagging, I do not know what my other options are. With Nick, it’s one long nagging fest: take off your pull-up, take off your pull-up, take off your pull-up; put your clothes on, put your clothes on, put your clothes on; eat, eat, eat; and my favorite, tube up, tube up, tube up. For meals, Nick is tube fed gravimetrically, which means we pour his formula/milk into a large syringe with an open top that is connected to his peg (feeding port) and allow gravity to pull the formula into his stomach. If the syringe (what we refer to as “the tube”) isn’t held high enough, the flow is decreased or slow. The open top is an open invitation to spills, but we can’t cover it or put the plunger in, because Nick will force all of the milk too quickly and risk blowing the peg. The natural consequence of Nick not holding his feeding tube up is a lengthy feeding and/or milk spilt all over his pants. The same pants that took 15 minutes to ease on…. It’s not a process I care to repeat, so I nag, “Tube up! Tube up! Tube up!” to avoid the milk spill consequence.

These kids practice hard core S&C (scoff and circumvent) when it comes to some consequences.

Example: Matt didn’t bring his dirty clothes to the laundry room one day, so the following day his favorite shirt and pants weren’t clean. He threw a royal fit and I began my chores. After he arrived at school, I received a text from his teacher informing he’d smuggled dirty clothes in his backpack and was trying to change…..

West of Home, South of Sanity by Carey Anne Photography

Nikon D800, edited with VSCOcam

3. If it is difficult for you to refrain from nagging, take a long shower while your children get ready for school. 

Yeah, tried that. The boys were in the same spot I’d left them and in the same condition: no clothes and sprawled out on their beds.

Here’s another reason this advice doesn’t work well for me: I’m a sucker for a long, hot shower. Allowing rushing water to cover my ears, blocking out sound and reality is heaven for me. Translated: I may never come out.

Shower scenario #2 is Matt coming in every two minutes to brief me on Nick’s progress, or lack thereof, to ask to turn on the television, to ask to change clothes or to tell me, “Mom! I need to talk!” before walking out…… At this point, I wonder who is really nagging whom….

Let’s stay in the bathroom for our next challenge: brushing teeth. Both boys have an issue with the left side of their mouths not having much room for the toothbrush. It practically requires the jaws of life and is painful, so this task is always accompanied by screams. Side note: When the social worker called almost nine years ago and said, “I have twin boys with brain damage and global developmental delays that need a home” part of me wishes he’d added, “who will require forever care to include wiping their asses and brushing their teeth. Every day. Forever. As in the rest of their lives or yours, whichever ends first.” Being presented with a detailed future outlook may have prevented some of our challenges….. and maybe unicorns are real.

West of Home, South of Sanity by Carey Anne Photography

Nikon F100, Portra 400, developed by Indie Film Lab

4. speaking of television: Establish an agreement that the television doesn’t turn on until the chores are done. If your children are watching television and their work is incomplete, simply turn off the set.

Oh, how I wish these authors could be present just once when this happens. I have twin boys with developmental delays. Fits thrown with 11 year old bodies and a 2 year old mind means destruction and screaming. Unfortunately, those 11 year old lungs carry more punch than a toddler’s. Side note: these boys can’t seem to remember what they’re expected to do each morning, but they have memorized the 1,002 steps required to turn on the television and surround sound and enter the four digit codes for their favorite channels…..

5. Let the morning routine chart be the boss. Instead of nagging, ask your children, “What is next on your morning routine chart?”

Wait! Do you mean the morning routine chart that Nick took a Sharpie to last week? As for asking, “What’s next?”, I haven’t had good results. Matt doesn’t like to put his cochlear implant devices on before he gets dressed, so we sign. Me signing, “What’s next?” while he’s lying on the floor naked, refusing to get dressed and covering his eyes, so he can’t see me communicating is definitely not success. What’s next is Mom sitting with a cup of coffee and staring at a wall.

Operation Crazy Mom Success

What I’ve learned through the years with these boys is that someone always wins. In their minds, it’s their win regardless of the events. I suppose this attitude is what fuels them for the next day. I suppose I’ll always be scrambling for new behavior modifications for them as well as for myself. I suppose we are living the life where a wonderful quote from the movie Unbroken, about hero Louie Zamperini, rings true: If you can take it, you can make it.

Just know that I’ll be taking and making it with a few hours of peace and quiet once school is in session.