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.

 

 

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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.

Blog Slump

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I have always been a baseball fan and recently I was watching an A’s and Giants game on TV while cooking dinner. When the announcers were discussing a particular hitter’s slump, I tuned in a little more closely. I had never thought about it too deeply before, but I could suddenly relate to the frustration and powerlessness a slumping player might feel.

Just like a player wanting to get a clutch hit or sacrifice fly for the sake of his team, I have similar wants for this blog and how it may help your Paleo journey. I am always hopeful that our experiences with Paleo and special needs will inspire, educate, and empower your family to take action and get healthy. The problem is that while I certainly feel the desire share my thoughts and experiences with you, my own life gets in the way.

The hitter at the plate struggles with timing, mechanics, and even injury, and I struggle to find the time and space for reflection and quality writing while managing the unrelenting needs of those around me. I often visualize the grand slam post that will send you back here begging for more, but I will always fall short of this goal when I’m exhausted and I’m facing more challenges than I can currently handle.

For the past few days and weeks, I’ve considered detailing my challenges around schedule change, dysregulation, and general frustration with the mainstreaming process, as I know many of you can relate to this life I lead. However, it seems to me that I’m at my best when I’ve suffered through the hard times and get to a place where the pride and joy I feel about my family’s accomplishments shine through and inspire your change and resilience. I pride myself on creating a space where you can come to be inspired and informed, not pulled down by someone else’s negative experiences and frustration.

So I’m writing today to relieve some of the pressure I’m feeling around this blog, my life, this summer and all of its demands. I know I’ll feel my healthiest later in the year if I take some time to enjoy this summer with realistic goals for myself and the needs of my family. Just a few weeks ago, I wrote this post about putting your own needs first. I wouldn’t be a good model for overall health if I stressed out about blogging and trying to be perfect for everybody, all of the time.

In all honesty, I feel that if I share with you how much I really love this space we’ve created and how much I really want to help each one of you, then maybe you’ll be a little less disappointed with the productivity and infrequency of this blog over the next few months.

I’ll be back to share our meals and adventures with you. Until then, have a wonderful summer and take care of yourself.

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A Lesson Learned

Approximately one year ago, we moved to a new home. It was only about 1 mile from our previous home, and the neighborhood was familiar. We were moving only a few blocks from our very close friends. Escrow closed in the first weeks of the new year. Little did we know how much we would learn from the timing of our move.

We visited the home often before we moved, explained as much as we could to both girls to prepare them for the transition. The first few days and weeks went smoothly. No troubles arose until Charlotte’s 3rd birthday at the end of February. As some of you may have experienced, the third birthday is very significant in the world of a special needs child. Under the age of three, the child can (somewhat easily) qualify for Early Start services. This is a state program where the child is evaluated and receives therapies or services, depending on their individual needs. Charlotte had qualified for a center-based program where she was working on controlling her sensory dysregulation impulses in a classroom setting.

She thrived in this environment and loved her school. Three mornings per week, her caring and supportive team of teachers gave both of us what we needed at this point…a community where we felt like we belonged, specific strategies to help with behavior issues at home, and a safe opportunity for Charlotte to practice her emerging, yet delayed, social skills.  Unfortunately, the center-based school and all Early Start services abruptly end on the child’s third birthday.

The next step for continued services is through the school district or medical insurance. We hit an immediate road block with both of these options. Charlotte’s strong language and motor skills kept her from qualifying for anything. We were encouraged to mainstream her. On a cold and dark March morning, I made calls to local preschools. With apprehension and a fear of being rejected, I explained our situation to the newly-opended preschool from the same elementary school that Dana attended. We were welcomed with open arms, yet we were fully aware that this was a mainstream situation and these teachers had completely different training and experience than where we had just come from. I alternated my teacher and parent hats, connecting with and educating the preschool staff, filling them with as much information as I could that was specific to Charlotte’s needs at that time–sensory regulation issues, social delays, repetitive language, and defiant behavior. Despite my best efforts and the wonderfully receptive teaching staff, it was a brutal change for Charlotte.

Looking back, I wonder how we could have been so blind to how these huge changes were going to affect her.  I think we’ve learned so much about her needs from this journey, that experiences like these have begun to guide our choices, our actions, and our parenting. We see it all so clearly now, but at the time she was the teacher and we were the students. She took us back to the beginning of her life to let us know how much she was affected–she stopped sleeping.

Just like in infancy, it was slow at first. Initially, just some trouble going down at bedtime. It would take a few trips into her bedroom to settle her down to sleep. As the nights progressed, there was more resistance going down, and eventually waking a few hours later. This could be as early as 10 or 11pm–just as we were winding down, she would appear wide-eyed in our doorway. At the worst point, she would be awake for several hours in our bed, absolutely refusing to go into her own room.

We have always been a big fan of sleep hygiene, so we were hesitant to start any habits that were going to be difficult to break later on. We knew that letting her learn to sleep in our bed was going to be a battle we would have to fight eventually, so we faced it head-on. We had done “sleep training” with both girls in the early days with success, but we were stuck with knowing that wasn’t going to work for Charlotte. We were confident that she would have cried all night, never allowing herself to go to sleep.

I tried everything I could think of–I stood outside of her door in the dark hallway for hours, trying to wean myself away from her so she could learn to sleep on her own. It was maddening to hear her fall asleep and then wake herself up screaming for me. One night I remember rocking her in the rocking chair for over an hour, only to have her awake and talking to me, instead of getting sleeping or even drowsy.

It was in the middle of one sleepless night that I remembered the sensory inputs that we had done early-on in her diagnosis. With her improved skills and sensory regulation, we hadn’t needed to do any bouncing, brushing, massage, or swinging. The next morning we made an appointment with the Occupational Therapist that we had worked with through Early Start. We paid the $125 for an hour-long session that would teach us to regulate and calm Charlotte’s nervous system to find sleep again.

We brought back all of our old tools and re-learned the importance of sensory input in Charlotte’s life. Without hesitation, we added in joint compressions, brushing therapy, jumping, and swinging to her daily routine. She began to seem like her old self in her new environment. We recognized that sensory regulation was not a ball we could afford to drop again, so we sought out private Occupational Therapy and began to pay for as much as we could afford. In the meantime, I filled a grievance with our insurance company for failure to cover her needs.

After a few weeks of rigorous sensory regulation inputs that made her feel comfortable in her new environments, Charlotte began sleeping better. We have learned so much about how to make her comfortable in her environment and how to help prepare her for sleep. We make sure she gets plenty of exercise in the form of therapy or play throughout the day. We start her bedtime routine early and give her a lot of time to get ready to go to sleep. Rocking, bouncing, massage, and other inputs became part of of her bedtime routine. We limit her naps and keep her bedtime consistent.

Currently she falls asleep easily and then wakes only once to come into our bed. Once there, she falls asleep quickly and sleeps soundly until morning. While it’s certainly not perfect, and we have tried everything from bribery to physically moving her to keep her in her own bed, we accept it as her progress and listen to what she continues to need–safety and security in the form of us.

Sensory inputs and twice weekly Occupational Therapy Sessions are firmly set in our schedule. We learned that this is absolutely crucial to her healthy sleep patterns. Also, with any change in routine or her environment, we prepare Charlotte with words and visuals. We travel less often, knowing how it stresses her system and affects her sleep. We let her be our guide for a busy weekend with friends or a mellow night at home with an early bedtime. We still look for the fine balance between challenging her system with new experiences and stressing her system to the point of dysregulation.

I heard Chris Kresser say on a recent podcast that more melatonin is produced in the gut than in the brain. I nodded in agreement and reflected on the lessons we have learned about sleep, change, regulation, and overall health in this past year. As we heal her gut with the Paleo diet, we will heal her brain and nervous system, and she will find more comfort in her environment with fewer sensory inputs.

In the meantime, we’ll celebrate Charlotte’s 4th birthday this month and all of the lessons we’ve learned together.

It’s a big, scary world out there…

As Charlotte’s social behavior and sensory issues have improved, we seem to blend a little better into mainstream playgroup scene. The need for me to explain to every person within earshot of what-her-issues-are-and-how-we-are-working-on-them-so-please-don’t-judge-me-too-harshly-as-a-parent, has gone down significantly.

In fact, most people seem to enjoy Charlotte’s budding social skills and emerging confidence. She is getting very creative with what she says upon initally greeting people. Lately, she’s been informing them of what she’s doing that day (my fault–lots of visual preparation there) or who she is going to be for Halloween (Rapunzel from Tangled). I heave a sigh of relief when these interactions go well, and there’s no need to explain some odd behavior or a statement that only makes sense in the four walls of our house.

As my comfort level with her behavior increases, I’ve told fewer people about her issues and most days I forget which parents/friends/relatives I’ve given the most recent updates to.  Until….I’m smack dab in the middle of mainstream preschool issues and get caught off guard by the parent who is telling me that Charlotte’s typically developing 3 year old behavior has negatively affected their child and somehow impedes some social interaction between the youngsters.

Now….here I am out there in the open, the sensitive and caring eyes of informed parents are gone. I’m left vulnerable searching for mainstream terms to defend the way my child is handling the situation. This parent will not understand the holes in her social development and how she has new coping skills that are changing every day, and I am so proud of her just for trying to make friends with your child that nothing else really matters. I want to say all of these things as fast as I can because I am fearful of being judged as a mainstream parent…please put us back in the special needs playground where all of this is acceptable and I’m doing a great job.

Instead, I smile a big chesire cat smile, knowing so many secretive and mysterious things about my daughter that nobody else will ever understand, and I say…”They’re just learning how to make friends.”