Recovery

I took the girls to a new dentist’s office a few weeks ago. I sat in the waiting room and began filling out the forms with our names, addresses, insurance information, and health history. While I was filling out Charlotte’s form, I stopped and held my pen above the word listed so innocently in alphabetical order: Autism. I was frozen with indecision. My first thought was to slide right past it . We had never been here before. I glanced up and observed Charlotte chatting away in a lively conversation with the receptionist while making good eye contact. They really would have no idea. I could walk right in to this new place with two typical kids with no shame and no secrets and no lengthy explanations. I wouldn’t be on the look out for sensory meltdowns or strange behaviors. Heck, maybe I could even sit in the waiting room during their cleanings and read a magazine like other parents do.

I stopped myself. Checking the box would only cause more questions and confusion for these medical professionals trying to learn their new clients. I could see them trying to match the myriad of symptoms that present as Autism to this social, alert child in front of them. No, it’s not a match. She is not Autistic. However, placed under the proper stressors, she is not going to respond typically. And really, with Charlotte, anything could happen. So, no, we are not typical. Knowing I couldn’t ignore the box and also protecting myself from any behaviors that may surprise us all, I established our reality with pen and paper for the first time. I checked the box. And next to it I wrote the word: Recovering.

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This has not been officially diagnosed. We haven’t taken her back to Kaiser and had her re-evaluated. (we would never put her through that again) We don’t have a doctor or other medical professional that keeps tabs on Charlotte’s progress and has proclaimed that Charlotte is no longer suffering with an Autism Spectrum Disorder. On December 10, 2010, we received the diagnosis, and from that day forward we took the reigns as her primary care providers.

The pediatric dental hygienist scanned the information I had provided her, she stopped and said aloud, “Recovering. Okay. Good.” There was no bright light or interrogation of how I arrived at that status. No questions of what defines “recovery” or the semi-controversial question of how one recovers Autism. There was no mention of the word Autism at all. But also present, was the absence of fan fare or acclamation. There was general acceptance in her response, as if this is something she sees on this very form every day. And as I logically expected, Charlotte breezed through the rest of the appointment and no other questions or concerns arose.

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We are stepping into this world of Recovery very slowly and carefully. It’s certainly different from the world I might have imagined back in 2010. I’m not sitting back with a glass of Chardonnay with my feet up looking over at Chad and saying, “Wow. Glad that’s over.”  We’re working harder than ever. Our current project list includes improving our marriage and finances, planning for the future, and adapting to the changing needs of both of our kids.

We’re gradually giving Charlotte more independence and pulling away therapies and other supports. We’re letting her talents, interests, and relationships develop. This is a delicate and scary process. I talked to Chad last night about our last session of OT (occupational therapy) yesterday and this idea of Recovery. We shared our fears and concerns. Can we say it’s real? We are entering the mainstream world now armed only with the tools we’ve developed ourselves. Is it enough?  We were protected under our label of Autism. If we step away from it, can we still use it if we need it?

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Recovery is not a safe word for me. My father battled alcoholism all of my childhood and spent many years in and out of Recovery, only to take his own life with alcohol in 2009. If I I’ve learned anything from the struggles of my dad, my self, and Charlotte, it’s that the human brain is fragile. It does not exist separate from our physical bodies. We have not looked at Autism as a disorder of the brain, but rather of the body. Our path for healing began with this very simple concept. When I look at our life and our journey thus far, this spark of hope lights up the darkness and the fear that lies ahead.

Recovery will include more of what we know will work, looking at Charlotte’s overall health and letting it continue to guide our path. Her behaviors, sleep, motor control, skin tone, eye contact, language, level of connection and empathy are all clues to how she is feeling in her body. We will continue to teach her how to coordinate her movements through occupational therapy and exercise, calm her nervous system with inputs, express her thoughts and needs with friends and family, train her eyes and brain to work together, encourage her to self-regulate with nature and play, and nourish her body with real food. We will continue to observe and change and grow and push toward health–mental, physical and spiritual.

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And while it’s scary to enter a world and stare down our biggest fears, we know that we have developed powerful tools for success. While the rest of the world wonders how and why Autism is affecting our kids, we will continue to pave our own path and find our own way toward health.

 

 

Adapt

In the first weeks of third grade, I taught a science lesson about Living Things. The objective was for students to understand that all living things do many of the same things: grow, reproduce, and adapt to the world around them. We always did a fun activity at the end of the lesson, categorizing Living and Non Living Things from pictures in magazines.

Just a few months ago, I recalled the Living and Non Living Things lesson after a series of camping trips with my family. Sleep doesn’t come easy for me even in the comforts of my own bed, so I hadn’t anticipated sleeping much when we made reservations for our tent camping trips last summer.

The first trip was a single overnight near our home and was as brutal as I expected it to be. The noises of other campers, howling winds, and fears of bears sniffing out my beef jerky midnight snack kept me from finding sleep. I believe I finally fell asleep in the wee hours of the morning and woke up for the day just a few hours later. It was during our second family bonding experience in the tent that I found myself surprisingly adapting to our new sleeping environment. I could hear a calming voice in my head telling me that last time everybody was safe and fine. Everything would be okay if I went to sleep this time, too. And with the help of some sleep aides and my beef jerky snack, I found more and more sleep each time we set up camp throughout the summer.

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What I loved about our camping trips this summer was that we all had to adapt. We had to learn and change the way we live everyday. Without the comforts of home and our modern conveniences, we cooked, played, slept, and ate differently. For us, it was a fun challenge and it reminded me of the science lesson I used to teach. I sadly considered that in all of the years I taught that lesson, I never fully connected to it.  I never took the time to consider myself as a Living Thing, and I pretty much took for granted all of the growing and adapting my human body had done in the 30 something years I’d been on this planet.

It’s only now that my body has adapted to real food and a healthier lifestyle that I can see the power and resilience that human beings have. We were made to live outdoors and do hard work. Our bodies and minds are strong and capable, and we need to be nourished with real food. I can see now how my body broke under poor food choices, excessive stress, and inefficient exercise. All of the concepts of the ancestral health movement that are driving us back to how we should live are forcing us to continue to grow and adapt in new ways.

Many of the health issues that we all seem to face come from adaptations our bodies have made to keep us functioning and alive, but not necessarily thriving and growing. I realize now that my insomnia is a fight or flight response to keep me alive in a state perceived as stressful. Despite my best attempts, I can’t seem to make my life any less stressful, but I can begin to understand how to help my body adapts to the stress.

Just like on the camping trip, I have learned to listen to that inner voice that tells me that everything is going to be okay. It’s a very important voice. It’s often right. It’s my wisdom and intuition that has come from surviving stress and coming out on the other side. I’ve learned that it’s the key to adapting and growing. In the midst of our struggles and brokenness, there’s a system in our bodies and minds that is learning and growing and taking notes on how to do it better next time.

I’ll admit that fear holds me back from this struggle. I won’t workout because I don’t want to be sore. Even though I know that sore muscles make me stronger. I resist turning off the TV and going to bed early to be more rested. Sometimes I even eat foods I know I shouldn’t because I don’t want to be judged because my choices are different. But I’m getting better at embracing the fear and owning the struggle, knowing that these are the choices that force me to adapt toward or away from better health.

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Just last week, I watched Charlotte get an award at school for Self Control. Her teacher told me at her Back-to-School Night that she sees nothing different about Charlotte compared to any other child. Charlotte has completely adapted to living the life of a healthy 5 year old.

She has struggled. And she has learned. We have watched her struggle and learned how to make her better. It’s a been a commitment to learning and growing, knowing that it will never be “fixed” or even “right”. But through it all, her amazing body and mind has changed and grown and developed into a strong and capable child.

It’s empowering to know that we’re all human and we’re all in this together. We are all striving to be strong and capable, and nobody has this all figured out. Our kids are watching us try and fail and then try some more. Charlotte will struggle again. We know that, but what’s different now is that we’re better prepared. I firmly believe that what doesn’t kill us, makes us stronger….but only if we are paying attention.

A Labor of Love

Three years ago our older daughter Dana was in her first week of Kindergarten. She was more than prepared and easily adapted to the independence and challenge that a full day of school offered. I vividly remember having no feelings of loss or sadness during that first week, no tears at the drop off for either one of us. Simultaneously wearing my mommy and teacher hats, I celebrated the light feeling of pride and happiness at the child that Dana had become, and tried to ignore some other lingering feelings.

Charlotte was 2 years old at the time. It was about 2 months after she had been diagnosed with sensory dysregulation. We were about 4 months into reducing gluten and grains, yet not fully Paleo. I had already been through a lot since her birth and naively thought we were through the worst of it. She had made huge gains in social interaction but had yet to receive her Autism diagnosis and the spiraling denial for services that would lead to more stress and frustration then I ever imagined.

The light and sunny feelings of Dana’s successful transition to Kinder were clouded by doubt and uncertainty about Charlotte’s school future. I couldn’t safely imagine that Charlotte would be standing in this same spotlight in just three years time. I could easily imagine Dana as a mature and accomplished third grader, but the thought of Charlotte’s anti-social sensory seeking and defiant behavior in a Kindergarten classroom left my chest tight with anxiety. Like a dentist’s child getting a cavity, I couldn’t bear the thought of sending Charlotte into any classroom without doing all I could to help her succeed.

And so it began. I promised myself I would do everything in my power to get her ready for a successful school experience. And if you’ve been reading any part of this blog, you know it’s been a labor of love. At a recent intake interview for ABA (behavioral) services, I gave her history and explained what interventions we’ve done to help Charlotte. It took several minutes to explain all we do to support Charlotte’s growth–the Paleo diet, her school environment, the constant and on-going communication with all adults whom she worked with, her exercise and therapy regime, her supplements, her outside time for sensory input, our plans for her upcoming Summer and final preparations for the start of school. I also explained how we build on what’s working and try to be flexible to change what’s not, how we’ve learned to seek help for problems that are bigger than us, and how we use Charlotte’s health as our compass for direction and assessment. I also briefly mentioned that I’ve had my own stress-related health issues to manage while trying to do all I could for her. And after taking notes, the evaluator sat back and shook her head. She paused and finally said, “You’ve attacked this from all angles. You have left no stone unturned.”

Even now, in the retelling of this story, I am flooded with feelings of relief. Her words lifted the burden from my shoulders that I had placed there three years earlier. I had done everything I set out to do. I wasn’t alone anymore with the pressure to make her all she could be. I was able to remove my blinders and see Charlotte for the amazing child she had become. It was after that interview that I felt a confidence that carried me through the rest of the Summer. When the big day came, Dana, Charlotte, Chad and I proudly walked onto campus knowing she was ready. Our confidence and togetherness defeated any lingering anxiety.

And on this first day of Kindergarten, I cried real tears of joy.

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Live and Learn

The early part of June has traditionally been a happy time for me. In my years as a student and as a teacher, this part of the year has officially launched the end of the laborious school year with an all out sprint into the freedoms of summer.  I often enter this time of year with high hopes for endless lazy summer days–picturing my self relaxed and with a drink in hand, lounging, swimming, and grilling. These images soon fade when I remember that the light feelings around summer are visions of my childhood and that my adult summer actually looks quite different–managing two over-achieving, active kids who need structure and stimulation to feel normal. I learned the valuable lesson of under-scheduling last summer when I naively thought no school and fewer activities meant fun and frolic. Last summer was filled with sleep issues for Charlotte and I, regressions in behavior, and a general boredom and restlessness that created an unsettled household. At the end of last August I wrote T.G.I.Fall.

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This year I vowed to be more prepared. I have said my proper good-byes to what I want summer to be and have embraced the challenge that it currently is–less time for myself, more time keeping the kids busy, the same amount of running around, and warmer weather. The only problem is that I don’t do anything half-ass. I take on more than I can handle, and I don’t feel like I’m prepared unless I’m over prepared. I drive myself a bit crazy trying not to re-live past mistakes. All self-deprecation aside, experiencing regression with a special needs child is painful and traumatic. Progress is what fuels the work we do and often a lack of progress is frustration enough. Regression, particularly in sleep and behavior, is a sharp stick in the eye for reflection on what not to do. It puts me in a constant state of simultaneously planning and reflecting.

I often say that I feel neurotic as I spend one season preparing for the next season. I spent the spring getting the kids ready for summer–camps, therapy schedules, math workbooks, swimming lessons, and family vacations all weaved together in a delicate structure. I’ll spend the summer making sure they have everything they need for the school year, and in the Fall, I’ll be thinking of Halloween, Thanksgiving, Christmas and birthdays in the New Year. I can safely say that I’m searching for a feeling of security. I want to know that we’re prepared for any surprise or challenge. I’m a planner by nature and this coping skill helps me find a sense of order, but not necessarily a sense of health or peace.

In April of this year, I couldn’t help myself. I began a list of all of things that I thought I could do, not only to avoid Charlotte’s dysregulation during the summer transition, but further support her for the much-anticipated start of Kindergarten in the Fall. It was a daunting and ambitious list of appointments to schedule, supplements to try, and conversations to have. When I went to the recesses of my thoughts and expelled everything I thought would help her, I had to pull back and refocus. There was too much to do and not enough time. And when our plans for the final push of Operation: Kindergarten Readiness were in place, we received word that our medical provider was planning to stop covering Charlotte’s Occupational Therapy due to the tremendous progress she has made. I didn’t process this news well, as dealing with loss at a time of need certainly provokes a fight or flight mentality for me. With tremendous patience and mental effort, I pushed my anxiety aside and advocated for Charlotte at her OT evaluation, carefully explaining that OT was the only service that we had ever received and it was only with a supportive therapist and strong communication that we had been able to move Charlotte this far. I reminded her that we were effectively using OT as a catch-all for many of Charlotte’s issues–sensory issues, low tone, fatigue, and their accompanying behaviors. The reality of moving into a mainstream kindergarten with an Autism diagnosis and no services was not something I would accept.

With much discussion over whether or not the Autism diagnosis was still valid, we were able to reach a compromise to continue her services for 6 more months through the start of Kindergarten. I took a deep breath, gave myself a pat on the back, and continued checking items off of my to-do list. Then life took us a different direction. My purse was stolen out of my car, and Charlotte got a random case of pneumonia in the same week. I also got knocked down with a virus while dealing with auto insurance and the DMV. Thankfully, Charlotte bounced back quickly as I was humbly reminded that good medical care sometimes looks like a chest x-ray and an antibiotic if it makes your child smile again.

After surviving that week and getting back on track to finish the school year, I found myself at a loss. My to-do list overwhelmed me and all of the work I had done to prepare Charlotte was only spiraling into more negative thoughts. I searched for a sense of peace that I had been working so hard to find. When the Kindergarten principal looked me in the eye and said that her school would do whatever it needed to help Charlotte next year, all I could feel was distrust and anxiety–a sandwich of pinching of fears from the past and a bright, blinding light of the unknown toward the future.

And then I had a few days away. No children and two days of nothing-ness that looked like drinks at the swimming pool and a feeling of lightness and ease that I had not felt in some time. It felt like summer used to be. And should be. I wanted to bottle the feeling of light and ease and put it in my carry-on bag. I feared that I would lose it again when I got home, but when I sat in church on Sunday and couldn’t think of anything to pray for, I realized I had made it. I’m not sure how I got there, but I grabbed the elusive feeling of peace that I have been searching for. And then I prayed that it would last. I prayed for a break in the storm and many more light and easy days with my girls.

There are still several things left to do on my list. The summer is upon us as I’m just hours away from retrieving Charlotte from her last days of the safety and routine of preschool. The peace I feel in my heart is knowing that I’ve done all I can. But mostly importantly, it comes from knowing that we’ve learned how to live and learn.

The Great Outdoors

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Back in January, I read The Primal Connection by Mark Sisson and made a commitment to myself to follow the principles for health outlined in the book.  I was most interested in using experiences in nature as a means for improving mental health, particularly mine and Charlotte’s. I was intrigued with the idea that time outdoors could provide the sensory input her body was seeking. It seemed to be the perfect extension of Paleo principles–if eating and moving like our ancestors improved our physical health, then using nature as a tool would appropriately engage our senses, restore a sense of well-being and contentment, and improve our neurological health.

I decided to give it a try based on my past and recent experiences in nature that have confirmed the theory that it is, in fact, calming and anxiety-reducing to “get away from it all”. Each year after our annual hiking and fishing trips to Mammoth Lakes in the Eastern Sierra, I return with a renewed spirit and deep sense of gratitude and connection.

When the school year started last Fall, my friend Rachel and I committed to taking long walks or hikes together once per week. Come rain or shine, we have hiked and talked and bonded over the challenges and triumphs of raising a Paleo family. The time outdoors has become uniquely ours and resulted in a deeper level of connection in our friendship.

My most cherished memories as a child come from time outdoors. We spent many family vacations at the beach, and when I now visit as an adult, I fondly remember the taste of sea water in my mouth and the feel of kelp at my ankles and the exhilaration of riding swells into the shore on my boogie board.

As I read Mark’s book, I found myself asking, if experiences in nature seem to nurture positive feelings of gratitude and connection, along with providing strong sensory feedback, why are we not spending more time outdoors?

Over the past few months, I have made more of an effort to get myself and the kids outside, and I’ve learned several things about making this element of our health a true priority.

It works

A few weeks ago, I picked Charlotte up from school on a Wednesday afternoon. Her teachers reported that she was calm and focused all day. I did a quick mental checklist of how much sleep she’d gotten, what she’d eaten, and what we’d done the day before so I make sure to replicate this formula for success many times over. Of course, I wasn’t surprised, remembering our quiet Tuesday afternoon at the beach together. She had happily played in the sand and mild sunshine, slept well that night, and performed well at school the next day. I now pay very close attention to how her outside time relates to better behavior and when questionable behavior may need an intervention in the form of a simple walk around the block or hopscotch in the front yard.

The Primal Connection mentioned that time outdoors spurs creative energy and encourages more independent play, and I didn’t believe it until I saw it. Charlotte has reduced her TV watching and ipad playing to just a few hours a week–completely voluntarily. When returning home from school or therapy, instead of zoning out in front of the screen, she happily gets to work making a craft or coloring a picture, consuming herself in creative thought for long periods of time.

Keep it Simple

I have learned that just like adopting the Paleo diet, this, too is a shift in thinking and takes patience and learning with yourself to find a groove. There have definitely been times over the last few months when I’ve bitten off more than I can chew. Some Saturday mornings, I’ll wake up ready to have a fun family day outdoors, only to find that I’m ripe with exhaustion. A quick recap of the week tells the story–cooking, hiking, CrossFit, grocery shopping, beach trips, kids’ activities, and homework leave no energy for new adventures requiring any extra effort. I’ve learned to scale back the expectations of myself and adopt this new aspect of our lifestyle more carefully. I often need to remind myself that our simple outdoor experiences are usually the most successful.

I have learned to consider that it all takes energy to make it work, and it won’t always go smoothly. Over Easter weekend, we visited my in-laws and took a walk on a nature trail that included Charlotte falling off of her bike and melting down, a grumpy old golfer accusing us of trespassing, and a near dog mauling with our dog and another dog off-leash. Needless to say, I wasn’t any more relaxed from our outdoor experience when we returned home. But rather than give up or blame myself on some level, we laughed it off and decided it certainly was a walk to remember.

Letting Go

I’ve found that Charlotte struggles the most with sensory dysregulation when she is not in control of her environment. As she has gotten older, she has learned communication and other coping tools to deal with simple things like sharing with her sister or waiting her turn. However, even in her progress, I can still see her sensory issues come alive in places where she cannot touch or feel or move like she needs to.

Yesterday I took her to a duck pond in our local community and learned an important lesson about environment. I couldn’t bring myself to buy bread to feed to the ducks, so when we arrived empty-handed, I anticipated a brief, twenty-minute excursion with nothing much to do except watch the ducks from afar and walk around the bank. When we arrived, I sensed that Charlotte wanted to be in control. I let go and while I let her guide me around the pond, I observed how her mind and body relaxed in the natural environment. I snapped photos of her as she used her muscles and maneuvered the tree roots and twigs on the banks, how she balanced using the tree’s trunk, and how she calmed when her feet entered the cool pond water. She was relaxed and at peace in a natural setting that had an ebb and flow all its own.

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When she slipped off her shoes to feel the earth on her feet, I kept on eye on the ground just ahead of her watching for broken glass or sharp twigs, but trusting that her senses were appropriately doing the work for her. We watched the turtles swim, listened to the crane’s call, and noted the bright orange color of the duck’s webbed feet. It felt natural and right and so simple.

As we walked to the car, Charlotte was already planning our next trip to the duck pond–this time with Dana, Daddy and his fishing pole, since there were fish in the water. I felt the weightlessness of her tiny hand in mine as we crossed the parking lot–using my senses to grab the moment and become fully aware of the precious time we had just shared.

Mirror, Mirror

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Last month we celebrated Charlotte’s 5th birthday. She hit a milestone number in a whirlwind week. Between traveling with both kids over the winter break and planning her small birthday party over the weekend, I did manage to find some time to reflect on everything that we have been through since her birth. What I concluded is that I am a changed person. I honestly remember very little about my life from before she was born. I can’t even recall what things I thought about, what I did with my time, or even what I ate.

I would have loved to do a full post on how much I’ve grown and learned since she was born. How the challenges of managing her health issues and my health issues simultaneously are often more than I feel like I can handle. How I now understand the depths of unconditional love in a way that I could have never before. How I see the world through a new lens of acceptance and respect. How walking on this path full of the big and little challenges and changes that raising her brings has taught me more about myself than any other experience I am certain I will ever have in my lifetime. I have found a new level of confidence with a self respect and acceptance that I never thought I would find.

But true to form, Charlotte didn’t give me much time to slow down and reflect. She kept me on my toes all week–her enthusiasm and excitement over her birthday bubbling over into overstimulation, sleep disturbances, anxiety, and repetitive behaviors. It certainly posed a challenge to get in a positive and reflective place while she became dysregulated and exhausted in anticipation of the big day.

The hardest part of managing Charlotte’s anxiety is that it is so much like my own. It knows no boundaries. It starts with happy and anticipatory thoughts of an exciting event. Without enough control to predict or prepare for every possible scenario–who is coming, what will my presents be, why can’t my birthday be here already–a spiraling and magnetic energy forms and begins grabbing at any fear or thought that she cannot control. Long buried fears of bumble bees and flies once again resurface and can’t be put to rest with mommy’s explanation that the flies and bees are more scared of you than you are of them. Her thoughts remain unsettled and the questions are unanswered. And so they are asked again and again and again.

Her repetition is a breeding ground for my own buried fears and concerns–for her future, for her relationships and for the challenges that she will continue to face. It’s at this point that my own tornado of self-defeating thoughts and emotions begin to gain momentum.

And at the same time, even the briefest moments of reflection and positive thinking actually pay big dividends. The challenges over the last five years have made me somewhat of an expert in managing my own anxiety. I have learned to painfully dig past the influences and experiences that have created the unhealthy patterns of negative self talk and found a well of acceptance and self worth that only I know how to nurture and protect. Using my own resources as tools for light and hope when the darkest thoughts want to have their way. And while it’s difficult and somewhat painful to have a mirror image of my most annoying patterns of behavior parroting in front of me, it’s comforting to know how to handle it.

It is as simple as telling myself what works for me will work for her and vice versa.

Self Talk

At about 2 years old, when Charlotte was first talking in meaningful sentences, she often repeated the phrases that calmed her. If she saw something that frightened her or if she was feeling upset or dysregualted, she would begin her mantra. “I’m okay. I’m okay. I’m okay.” It was an early coping mechanism that served a valuable purpose. Her self talk calmed the anxiety storm that was brewing internally. I’ve used it often myself when I feeling myself getting worked up. A couple of deep breaths and Charlotte’s mantra are a quick fix when either one of us are on the verge of a meltdown.

Back to Basics

In the last post, I mentioned a book called The Primal Connection by Mark Sisson. This book can really be best described as a Primal/Paleo Blueprint for a healthy mind. Mark discusses all of the ways modern society has lead us down a path of anxious and negative thoughts. After reading this book, I began to understand my issues with anxiety not as the shameful character flaw that I always thought them to be, but more of a result of human cognitive abilities gone a bit haywire. Mark discusses how “technology–and the noise, sound, light, and thought pollution it produces-the fight or flight response, our bread and butter throughout evolution, is now one of the most abused mechanisms in the human body.”

All of the seemingly innocent thoughts and fears that Charlotte and I should otherwise dismiss are noisy alarms in our anxious and unsettled minds–sending off signals for fight-or-flight and the accompanying stress hormones cortisol and adrenaline, keeping us both awake in the nighttime hours.

Mark beautifully outlines in his book all of the way we can counteract these broken biological messages. Simple pleasures like a walk outside, slowing down the pace of a busy day, or taking a bath are all ways to reset the body and mind naturally. And on a day where the stress hormones are free flowing around these parts, we’ll grab a sweatshirt and head outside. A quick walk or bike ride around the block, some creative time with sidewalk chalk or just digging in the dirt for worms really brings Charlotte back to a place where she can better control the anxious thoughts and behaviors.

Ride it Out

There were obviously days during Charlotte’s birthday week that I wanted to scream in frustration. When several sleepless nights and dysregulated days were taking their toll on my mental state, I stayed above the darkness knowing that This Too Shall Pass. Knowing how you got into an anxious situation is often your quickest ticket out of it. As much as I tried to control all of the behaviors to prevent a spiral for both us, I also knew that it would all be back to normal when the birthday excitement died down.

Sure enough, several weeks have passed and I have found the space to reflect and post on how experiences like these continue to lead us down a path of acceptance. The more we anticipate and understand Charlotte’s needs, then more we are in a place to guide her toward a healthier mind.

And as I think further back, before she was born, maybe there are still some parts of me that have remained unchanged. I was a teacher, and I will always be a teacher. But these days, instead of teaching multiplication and reading comprehension skills, I’m modeling lessons in self care and ultimately the most powerful weapon against anxiety: confidence and self acceptance.

Disneyland Revisited

Taking trips to Disneyland became a family tradition when we thought Dana might be old enough to enjoy it. We attempted our first family trip when Dana was about 2 years old and I was pregnant with Charlotte. Although I was mildly nauseous and very tired wandering through Fantasyland with a toddler in the July heat, the experience was undeniably magical.  Dana was as bright-eyed and full of wonder as the kids you see on the commercials and print ads. She embraced each and every character with a big hug and a huge smile. She never melted down over the crowds or lines, and her enthusiasm and excitement made the experience truly unforgettable.

In 2009, we returned to Disneyland, hoping for a repeat performance with two kids. Charlotte was about 18 months old, and she was walking and talking and looking very much ready for the full Disney experience. Dana was older and ready to enjoy bigger and faster rides. I have fond memories of the trip, but I also remember returning home exhausted. It was more than just your typical Disneyland hangover, I was struggling through a confused haze.

My hope had been to recreate the magic and innocence we had experienced with Dana just a few years earlier, but I knew we had fallen short. Dana was generally not as interested in princess and fairies as she had been just a few years earlier and Charlotte’s behavior certainly was not magical nor full of wonder. She had difficulty sleeping in the hotel–waking often and taking a long time to return to sleep. As a result, she was tired and dysregulated at the park. She resisted riding in the stroller and when we took her out to walk, she picked up every item within reach off of the ground and placed it in her mouth. She approached the princesses and other characters guarded with trepidation. Instead of running and embracing them with unabashed sweetness and innocence like Dana had done, she darted from side to side and then ran as fast as she could, circling their colorful gowns.

And if you have been following this blog for some time, you know that I was heavily medicated for post partum depression at this time. Other events that year are fuzzy memories, but the glassy confusion and disorientation I felt as a result of that trip are crystal clear in my mind. Something was clearly not right with Charlotte, and for several months the experiences and memories floated through my consciousness looking for a safe place to land.

We put any future Disney trips on hold as the pieces of the puzzle began to fall into place. We learned the name for Charlotte’s struggles just a few months later. And as much as we all wanted to return to the Happiest Place on Earth, we knew it wasn’t the right place for Charlotte. We carefully explained to Dana that we would go again when Charlotte was ready. Over the last few years, we’ve all watched and waited patiently as her nervous system has learned to effectively process more stimulation.

A few months ago, Charlotte started showing a consistent interest in the Disneyland app on our ipad. It’s a great app as the ipad user engages with Disneyland attractions much like a park visitor would. The music changes as the user moves through the different “lands” of the park. Seeing Charlotte’s interest in this app, as well as her improved behavior, sleep, and postural control, Chad and I knew it was time to begin planning the trip.

While it was daunting to relive past disappointments and unrealistic expectations in preparation for this trip, I kept focused on what Charlotte would need to be successful.

I narrowed my concerns down to long lines and food.

One of my favorite blogs, The Diary of a Mom, had mentioned a special pass for park visitors with invisible disabilities (like Autism). The pass supposedly shortened lines and let Disney cast members know that your child may need extra attention. The GAC (Guest Assistance Card) turned out to be a lifesaver. When we entered the park on our first day, I went straight to the Town Hall and stood in line. I told the Disney cast member that my daughter was on the Autism Spectrum and I wanted to see if there were any accomodations that could be provided. He asked me a few questions and presented me with a card stating her name, the number in our party, and the days we would be visiting the park.

Our pass was tailored to Charlotte’s needs. We showed to the Disney cast member at the entrance to each ride, and we were able to enter through the handicapped/wheelchair entrance or Fast Pass lines for the bigger rides. We could use the stroller in the line if we needed to. The beautiful part about the pass was that Charlotte used her energy for controlling her behavior and enjoying the experience. I was able to help her manage her sensory needs throughout the day. Waiting in long lines would have zapped her energy and enthusiasm, leaving little for dealing with the sensory challenges around every turn.

I knew that the food issue would just take some preparation. Some internet research told me that Disney offered many gluten-free options. My plan was to eat meals at the park or hotel restaurants and pack plenty of Paleo snacks. It worked out very well, as our hotel offered a hot breakfast of eggs, bacon, and fruit. Lunches were eaten inside the park restaurants. I simply asked for gluten-free replacements for items like corn bread and hot dog buns. Since my kids are used to going without these starches, the gluten-free breads and rolls felt like a special treat.

Our favorite Paleo treats worked great for the long car ride as well as in the park between meals. We packed plenty of coconut chips, apples, raisins, sunflower seed butter muffins, and sweet potato bars. It certainly wasn’t easy, but I saved the day before the trip for baking and packing the special treats.

The trip was special and magical in its own way. Dana was tall enough to ride every ride with her roller-coaster-enthusiast daddy while Charlotte and I made our way through the same Fantasyland and princess attractions that Dana and I had enjoyed so many years ago together. Charlotte loved the tea cups, getting her face painted, visiting the princess, and especially Toon Town. By the time we had gone on a few rides together, she let us know that she preferred outside rides and roller coasters, and that any ride without dark caves was okay with her. She self-regulated beautifully and let me know when she needed a break. It was fine with me to sit in the shade, slow down, and soak in the experience–making it all our own.

I could not be more proud of her and how well she handled the many challenges she faced on the trip. On the morning of the last day of our trip, we learned that our dog, Redford, had passed away while we were gone. Chad and I shared the news with Dana, encouraging her to enjoy the day as much as she could. We all decided we would wait to tell Charlotte until the day was over.

As we headed out of the mountains of Southern California and began the long stretch of highway home, we sat with the news and I knew we needed to talk about it as a family. Charlotte had already processed and experienced so much. I felt like this might be the end of the fun, peaceful trip we had all needed. I felt certain a meltdown with repetitive and scripted language was going to fall upon us. I was unsettled between telling her and facing the uncertain fate of her reaction and waiting for her to discover for herself when we got home.

But I had no reason to worry. True to form, she met the challenge in her own way. Upon hearing that Redford was in heaven, she asked for God to welcome and watch over him.

My mind was at peace and my heart was heavy but happy. All that was left was a silent prayer of thanks for the challenges and disappointments that have become incredible blessings and magical family experiences.