Category Archives: Autism

Recovery

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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.

 

 

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

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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.

It takes Serenity, Courage, and Wisdom

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Each day I pick up Charlotte from preschool, I immediately check her lunch box. She has recently started attending 3 full days of pre-kindergarten and now eats lunch and takes naps at school. The transition has been exceptionally smooth and I find that if I stock her lunch full of her favorite foods, I’m pretty guaranteed to see only crumbs left in her Planet Box.

Last Wednesday I found her precious salmon cakes in the protein compartment completely untouched. I got little information from her teacher’s aide about why her lunch wasn’t finished, and it was ultimately Charlotte on the car ride home who provided me with the key piece of information that I needed.

When she shared from the backseat that she had enjoyed a smoothie at school today, I pressed further. When I asked her what was in the smoothie, she promptly reported strawberries, raspberries, and yogurt. Yogurt? I began scanning my brain for the last conversation I had with her school staff about dairy. Had I made it clear that she couldn’t have dairy? I probably didn’t remind them this school year. So worried about gluten and grains, I completely forgot dairy! Swirls of guilt and confusion set into my thoughts and they were only made worse by what I saw when we got home.

I asked Charlotte if she had experienced a tummy ache or if anything hurt. She told me she felt fine, but while I watched her watching her favorite movie, Dora Explorer Girls, I saw the regulation and predictability around her behavior that we had recently gained slowly evaporate. As hard as she tried, she couldn’t sit still. Sensory seeking behaviors like pacing around the table, pushing on the edge of the table with her foot, and inverting herself in weird positions into the couch cushions were telling signs that things were not right in her body–all of a sudden.

A few minutes later she was arguing with her sister and communicating less. What she was saying wasn’t making sense. Her delicious Paleo dinner sat untouched, and I predicted a difficult night shift for myself, as Chad was out-of-town. Sure enough, at some point in the middle of the night, I woke up to find her pacing around my room in the dark, argumentative and upset about going back to bed.

Thursday morning I woke up feeling overwhelmed and upset. We had a full day ahead, and I was dysregulated myself–struggling with PMS and interrupted sleep. I was feeling angry and distressed, wondering why everything in my life has to be so hard.

And then I stopped. 

I found the strength that is found in clear and healthy thoughts, and I pulled out the mental tool box I have developed to help myself in these situations. I meditated a bit in the morning, said the Serenity Prayer several times, and then made a plan to help Charlotte.

When we arrived at our Occupational Therapy session a few hours later, I explained the situation to our wonderful therapist and asked for a restorative and regulatory session to get Charlotte’s nervous system under control. I took a brisk walk during her session to regulate myself and when she emerged, I could already see by the way that she sat down in the chair next to me that she was restored on many levels. I thanked our therapist profusely, and we went about our day with very few issues. The next day I spoke to her school and asked that dairy not be served to Charlotte. I asked the staff to substitute the gluten-free cookies that I had provided as an alternate treat.

I’ve often said that when Charlotte’s routine changes, it’s like a switch is flipped internally. She becomes dysregulated, withdrawn, frustrated, and just more autistic than we normally see. This was the first time I had ever see it happen with food. It was scary and empowering at the same time. I thought back to The Autism Revolution, which I continue to reread in parts every couple of days. The following quote stood out to me about our recent situation. From page 107 in Chapter 5 Help the Body Mend the Brain:

“…that autism may be more of a ‘state’ that can change than a ‘trait’ that is fixed and unchangeable. Change can come very quickly when a blockage is somehow removed or a previously unworkable connection is made.”

As parents we know these workable connections so well. In the form of eye contact, verbal processing, clear and understandable questions and answers, or even a lack of repetitive speech or nonsense talk, it’s when we reach our kids and see them respond. It’s exhilarating and inspiring. We keep at it and work toward more growth, improved communication, and the holy grail of self-regulation.

It’s my belief that when the workable connections break down, the child needs our help to restore order. No one else knows what they need like we do. From twisting into pillows in the couch to screaming at me in the middle of the night, I knew that Charlotte was calling out for help.

It’s a big responsibility. It’s overwhelming, exhausting, and lonely.

Parents of special needs children must wake each and every morning and recommit to helping their child get exactly what they need using varied skills and strategies–carefully planned meals, critical but objective observation, appropriate and efficient communication with others who deal with the child, as well as walking a tight rope schedule that challenges the child to be a part of the outside world while preventing their total load of stressors from reaching the dreaded tipping point.

My victory over yogurt last week taught me that in addition to all of things listed above, the skill of taking care of myself is a crucial step in regulating Charlotte. After pushing through PMS symptoms, anger, and guilt I was able to get to a place of problem solving and solutions.

It’s taken me years of difficult experiences to build a tool box full of helpful strategies and support, but over time I am learning to find the Serenity to accept the things I cannot change, the Courage to change the things I can and most importantly, the Wisdom to know the difference.

A Dose of Validation and Inspiration

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Charlotte’s journey through Autism continues to teach our family powerful, life long lessons about how to manage our health. As we work to improve Charlotte’s overall health and reduce her stress, her Autism and sensory processing symptoms are minimized. She continues to emerge victorious from an internal battle of stressors and toxins that were working diligently to take her body down. 

I started this blog last year when I knew that I had this important story to tell. As I began to research our relatively common circumstances with such a relatively simple intervention, I expected to see many Autism and Paleo success stories. But to this day, ours stands as one in a lone few in the vast pages of a simple Google search.

When we began to treat Charlotte’s Autism with a Paleo diet, I searched for a community of sorts, a niche within the Paleo community that could give us a pat on the back, provide some science to back our success, and generally help us feel that we belong somewhere.

When I couldn’t find it, I created it, and when Robb Wolf updated his website, I noticed a spot for Autism success stories and knew that we belonged there. I scripted our story, provided a link it to this site, and submitted it in about 20 minutes, as not to lose my nerve. And as I follow the numbers, I am relieved to find more and more individuals come to this blog every day seeking a commuity within a community that provides support and information to connect the dots in their child’s health and do all they can to solve the mystery that is Autism.

Our personal story may be enough to inspire you to try Paleo for the sake of your child, but I am still a realist and I know how difficult it is to silence the skeptical voice of your pediatrican or relative, especially if you are new to Paleo. I continue to listen carefully in podcasts and blog articles for studies, science, or some level of proof of how Paleo helps Autism so that I could illustrate just how powerful and effective this intervention could be for you and your family. In addition, I really wanted to give you some fancy scientific words that you could bust out at the next function when your child’s bunless burger and fruit salad seem out place.

My prayers were answered. When I saw the Mark’s Daily Apple post entitled Autism: A Brain or Whole Body Disorder in my email in box, I got chills. Finally, somebody was talking to me. An instant cure for isolation in abyss of the Autism community was a load of information directly relating to our life was spelled out by Mark Sisson.

Paleo/Primal leader, Mark Sisson took an empathetic and straightforward approach in this powerful post, reaching out to those of us who are effected by the epidemic of Autism, while discussing complexity the conditions.

Mark lays out some developing science and theories, referencing a book called The Autism Revolution written by Martha Herbert, a Harvard pediatric neurologist. I ordered the book and now am on my second reading with pages and pages of notes that validate our journey. I’ve learned so much about why Charlotte’s health has improved, why her symptoms have improved, and most importantly how to continue to help her.

Dr. Herbert’s strategies center around the idea that Autism as a symptom of the entire body and all of its systems. She provides science and research through the stories of individuals, like Charlotte, who have shown improvements in their symptoms as a direct result of improvements in their overall health.

If you choose to read the book, you may find that Dr. Herbert’s style and message is similar to what you will find here on this blog. On page xii of the introduction, she refers to her work as “a book of success stories that makes sense biologically.” This instantly resonated with me as my goal for Peace Love Paleo is to eventually become a community of many more success stories, not just ours. Like no other book or article I’ve ever read, her thinking and research clearly lines up with our experiences and successes.

Dr. Herbert describes Autism “not a genetic tragedy, but rather an unfolding and unprecedented challenge related to many other health and environmental crises”. She wants to help you “understand that your child’s brain is not broken or impaired but challenged, overwhelmed, and obstructed.”

In addition, she works to instill a sense of gratitude and encourages you, as the parent, to “see your child as a teacher who will bring out how extraordinary you are and see too how much you can do when faced with an extraordinary challenge.” This is like music to my ears.

As we’ve learned in the past few months, she demonstrates how nutrients need to be an available resource to handle whatever challenges may come along in our children.

I highly recommend this book for anyone who is searching for some readable science to back the connection between Autism and Paleo, needs to be inspired by stories of triumph over this disorder, or just wants to learn more about what Autism really is.

This book and Mark’s post will help define the focus of this blog. My plan is to present their information to you in usable and digestible chunks over the next few months. If you are coming off of a summer like I have, you need to be restored, inspired, and validated. I will do my best to give you tools to make that happen.

If I haven’t said it lately, thank you for being a part of this community within a community. Your comments and feedback inspire me to continue to share our story and give you what you may need to stay inspired and encouraged. Please keep the comments, questions, and stories coming. It’s not an easy road we’re traveling. Let’s continue to seek comfort in each other’s experiences and resources like Dr. Herbert’s book.

TGIF

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Thank God it’s Fall.

This summer we faced challenges that forced us to take a hard look at our expectations, our lifestyle, and our reality. We had to dig deep, reevaluate and refocus on the health of our family.

We didn’t go off the rails with food. I wish we could say that having a few cheat meals or non-Paleo parties taught us that our health is a fragile state that cannot be taken for granted. It has nothing to do with food. While staying squeaky-clean Paleo we learned the hard lesson of how stress can be just as toxic to the body as gluten-filled pastries or a plate of pasta.

It is with relief and gratitude that I write this post to share how we weathered the storm of a stressful and dysregulated summer and made it to a place where we can continue to share our experiences in the hope of inspiring your journey toward better health.

When I reread the post where I regretfully signed off of this blog for the summer, I can feel the underpinnings of stress and anxiety in my words. I can sense the unrest that was setting up shop in our world and the waves of challenges that were forming. The girls’ dance recital, Chad’s emergency surgery, and other emotional stressors in the month of June began to shake our rock solid sense of control.

Reality

Parenting a fairly well-regulated, mainstreamed child whose ASD symptoms stood safely in the distance became upended with the change of seasons. It started with Charlotte’s nighttime wakings and like a switch that was flipped on her last day of preschool, restlessness took hold at night. Limited sleep descended upon all of us.

It was the first hint that the excitatory neurons that cause her ASD behaviors were unsettled and disorganized and had come out to play in the summer months.

Charlotte’s typical mildly defiant nature was replaced with regressive behaviors in unusual and unpredictable patterns. A lack of effort and defiance at ballet class, a loss of skills at swimming lessons, and screaming and tantruming at occupational therapy sessions were windows into the stress and disorganization she was feeling inside.

This unsettled and disorganized state is familiar to us. Charlotte tends to have more ASD symptoms in times of stress and change of routine. What was different about this period of dysregulation was how the change in her behavior effected the dynamics of our entire family and each family member individually.

I can tell you with certainty now that stress spreads. Like a virus that doesn’t respond to your best herbal treatments, it creeps into the thoughts and behaviors of all family members showing symptoms like conflict, exhaustion, pouting, and insomnia, not to mention the marital and sibling discord.

Without the distractions of school and activities the stress is constant–unending from daytime to nighttime and back to daytime again. Can Mommy get a break?

I was faced with the daunting need of my own flailing mental health while managing a household that was clearly but temporarily off track. It was all so familiar and traumatic. Like 2008, but with bone broth, salmon, and grass-fed beef instead of Zoloft and Ativan.

Choices

It was on our family vacation that my insomnia set in, and I recognized my adrenal and mental health issues were at a point of no return. As much as I tried to undo the anxious and negative thoughts that had gotten me to a place of unrest, I couldn’t undo the nighttime wakings and unsettled thoughts about Charlotte and her future that had set up camp in my consciousness.

I had the needs of my kids in my face 24-7, and I was beyond the point of yoga and meditation to help myself and my family. I considered going back on my meds as a quick fix. Numbing the pain would be helpful to my daily functioning, but I knew they would also blunt my creativity and passion for fighting through this challenge.

Digging Deep and Finding the Light

I’ve done it before and knew I must do it again. I reread my favorite self-help author Brene’ Brown and got inspired to Dig Deep. I found comfort and restorative energy in reading other blogs of special needs parents, learning all I could about Autism and regression, and continued to eat clean and get as many nutrients as I could find.

I got smart about the challenges that Charlotte was facing. I really wanted to combine all of her challenges into one big ball or misery and exhaustion, but I forced myself to peel apart the behaviors and address each one separately and deliberately. I made social stories to present acceptable and unacceptable behaviors in a visual format.

I began to feel like there was an overlap in the issues and feelings that Charlotte and I faced–a unsettledness that changed from day-to-day, a general feeling of not doing enough with our bodies and minds to feel fulfilled. I built on the exuberance and excitement that Charlotte felt on our family vacation to the mountains, and I got us outside as often as possible. I plugged into Paleo philosophies that were new to me–beach trips and bike rides, and as many trips to the pool as I could manage. We ventured out to nearby lake for fishing and playing, and we all found nature peaceful and calming like nothing inside the home could ever provide.

Toward the end of the summer, we began to find a rhythm within ourselves again. I had more energy to keep the girls entertained, and I began to understand that boredom was the bane of our existence. A more stimulated Charlotte was a better behaved and more regulated Charlotte. Everything and everyone felt better. It was counter-intuitive to everything I was working toward, but I let go of a strict routine, structure, and predictability, and let adventures and experiences help everybody. I tested my theory and took both girls on a road trip by myself right before the start of school.

I was amazed at the children that I saw before me. A full day of new experiences–from the beach to the zoo and out to dinner, their behavior was manageable and acceptable. I was in control again and having fun. I could feel my cortisol levels dropping as we connected and healed.

Learn and Grow

There were so many times when I wanted to come to this blog and write/scream/vent all of feelings of anger and frustration at the state of my life. How could I let this happen again? What had I done to deserve this state of stress and misery?

I knew you didn’t have the answer. I knew it was within me. I had some growing to do, and I was the only one that could help me with that. I went back to what worked in the past and built on it. Living Paleo has taught me to find strength and positive energy in things that come from natural sources–a good meal, a talk with a friend, and a walk around the block build patience and trust that lead a well of happiness and gratitude at the end of a long road.

The rhythm of the school year is upon us and I’m already seeing the familiar behaviors of motivation for learning, play and a good night’s sleep to finish the day. Boredom and restlessness have been replaced with inspiration and excitement.

While I’m happy to see this long and challenging summer come to an end, I know that we are all richer and wiser for the experience. I will take these powerful lessons and turn them into tools to stay healthy next summer. We will plan to stay busy and active, get outside everyday, approach behavior and sleep with a new perspective, and focus on staying relaxed and connected.

Life’s challenges are seasonal–always changing and deeply rewarding. This particular season taught me so much about my own health, the depth and power of my own strength, and the gifts that are my children.

Nutrients & Anti-nutrients

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Since I’ve experienced a significant reduction in my PMS sytmptoms and had a noticable difference in my hair re-growth, I have come to accept nutrient-dense beef liver one of the staples in my diet. Rather than treating my thinning hair and severe PMS as unfixable and unfortunate genetic gifts that I was just going to have to live with, I’ve recognized these annoying traits as important messages from my body. As a reward for paying attention, my body has responded with thicker hair and a better mood.

What’s amazing to me is how the body knows to prioritize these sacred nutrients. Now that I realize that it takes nutrients to make the systems of the body work together (something that I had always just taken for granted before), I can understand that my life-giving organs (heart, lungs, etc) and my life-making organs (uterus) take what they need while somehow my body knows that I will survive another day if my hair health and happiness level remain unattended for a while.

What’s beautiful about my Paleo journey is that I can apply it to the adorable bundles of genetic material sitting at the breakfast table with me every morning. Feeding their bodies fresh pastured eggs and fresh fruit gives me a sense of pride and relief that they are getting a host of nutrients that will power them through their day and give them a better foundation of overall health. I recognize that their bodies and minds are developing faster than I can keep nutrient-dense foods in them, and with unlimited funds and energy, I’d be giving them the cleanest, pastured-raised and most nutrient-dense proteins alongside locally grown, organic fruits and vegetables.

What’s puzzling to me about the food industry is how foods that we were not designed to eat (grains, legumes, and even dairy) end up in packages containing messages of health and nutrition for those who consume them. Bagels and cereal are disguised as food when really they are the opposite of health. All grains contain anti-nutrients, and as you may have guessed by my recent love-affair with nutrients, they are something that I want nothing to do with. In fact, I’m hoping that this post gets you seriously thinking about replacing your nutrient-deficient bowl of cereal with a nutrient-rich scrambled egg.

So what is an anti-nutrient and why is it so bad?

From the What is Paleo? page on this site: It is important to think of grains as a plant that lives in the wild and must defend itself from predators like any animal would. Grains and like plants use toxins called anti-nutrients (lectin, gluten, phytates) to protect themselves from being eaten. That is why they must go through extensive processing to be edible for humans. The heavy processing still leaves inflammatory agents in the grains that wreak havoc on our digestive systems, insulin regulation, and other bodily functions. Contrary to Conventional Wisdom, even whole grains are not healthy.

In addition, anti-nutrients do just what their name implies–they prevent the body’s absorption of these crucial vitamins and minerals.

Respecting the body and learning its signals is an important part of regaining our overall health. In our case, using the Paleo diet to restore nutrients to mine and Charlotte’s depleted systems, we enabled a healing process that is leading us out of a desperate situation. We’re not alone. A nutrient-rich Paleo diet has healed many broken and depleted systems.The internet is filled with Paleo success stories of individuals healing themselves from everything from Fibromyalgia to GERD.

Adding nutrients to improve Autism may be catching on. In this article on minimizing Autism incidence, posted by my friends Molly & Leah at A Ventography, nutritional deficiencies were listed as a critical component to treating Autism. And while I recognize that the causes and severity of Autism and related disorders are complex and vary from child to child, it doesn’t seem to make any sense to continue to feed our children and ourselves anything that would prevent the optimum absorption of nutrients.

I often say that we treated Charlotte’s Autism by treating it as a symptom of distress within the network of systems that is her body. All of the nutrients that she eats and the anti-nutrients that she avoids have given her body the ability to heal itself. As she grows and understands how food makes her feel, she will learn the valuable lesson of listening to and respecting her body’s capabilities and limits.

For more information on food politics and the over-production of grains, see part 4 of this HBO Documentary: The Weight of the Nation.

Click here for a video clip of Mark Sisson discussing the effects grains have on our bodies.

Robb Wolf’s post on Kids, Paleo, and Nutrient Density.

Our Secret to a Delicious Liver Burger

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Last night we grilled our homemade Paleo burgers and when I sliced into mine and saw juicy deliciousness running onto my plate, I knew we had a recipe that I was ready to share.

You may remember that Chad and I began a quest to incorporate organ meat into our diet after I realized that my hair loss may be caused by nutrient deficiencies as a result of my adrenal issues. Organ meats, especially liver, contain loads of Vitamin A, which was the main ingredient in the vitamins that were helping my hair grow again. See this post for more details.

We have consistently been eating beef liver for about 4 weeks, adding it to our weekly burgers. Each week Chad tweeks the recipe a bit working toward the right blend of flavorful juicy-ness that hides any metallic taste of the liver. As we enjoyed this nutrient dense meal last night, we discussed what we believe to be the secret ingredient to creating a moist and flavorful burger that contains both grass fed beef and beef liver.

Yes, it’s the candy of meats. A Paleo staple and my favorite food. BACON! Well, actually we used bacon’s snobbier Italian cousin–Pancetta. Pancetta is pork belly meat that is salt cured, seasoned with such spices as nutmeg, fennel, peppercorns, dried ground hot peppers and garlic, then dried for at least three months (source: Wikipedia). We love pancetta’s delicious richness and flavor, and we find that it pairs well with many meats and vegetables. It is more expensive than bacon and harder to find, but well worth the search, in our opinion. We buy ours at our local meat market where we pick up all of our grass fed meats, beef liver, and fresh fish.

After many attempts at getting this recipe just right, we can safely say that incorpoarting fattier meats like sausage and bacon/pancetta adds the juicy-ness that is difficult to get in a typical grass fed burger, and the rest is in the cooking:

Recipe

This recipe made 2 larger adult and 2 medium sized burgers for our kids. It was the perfect amount for our family, as our appetities tend to run on the higher end.

1 1/4 pound grass fed ground beef

1/4 pound beef liver (grass fed preferrably)

1/3 pound pancetta or bacon

4 large Italian sausage links (without casings)

1 whole egg (we use pastured eggs)

1/2 TBSP fresh basil (when chopped)

1 TBSP Worcestershire sauce

1/2 TBSP spicy or regular mustard

1/4 tsp olive oil

1 tsp sea salt

1 tsp pepper

1/2 tsp garlic powder

1/2 tsp cumin

1/2 tsp chili powder

1/2 tsp paprika

1/2 tsp cardamom

1/4 tsp nutmeg

Combine meats–we used the grinder attachment from our Kitchen Aid mixer to grind ground beef, panchetta, sausage, and liver. If you get the liver in a frozen piece (1 pound or 1/2 pound pieces are easiest to work with), thaw it slightly and slice off about a 1/4 pound. If you don’t have a grinder, chop up the liver and pancetta/bacon as small as possible and mix with other meats.

To the meat mixture, add the whole egg, Worcestershire sauce, mustard, olive oil, and spices and mix vigorously with a large fork and form into a large ball. Place the ball of meat into a large bowl and let it sit in the refrigerator for a minimum of 20 minutes. Form into patties appropriately sized for your family and grill over a hot fire for 4-6 minutes on each side, according to how you like your burgers cooked. Chad’s grilling tip: do not touch or press the patties while they are grilling to keep the juices in tact.

Serve on a bed of lettuce and top with avocado and/or your favorite burger condiments.

Health Update

I have always felt that Charlotte and my health issues stemmed from a lack of nutrients. As soon as we began the Paleo diet and consistently ate nutrient dense foods, we immediately felt better–I had more energy and Charlotte’s eye contact and sensory issues improved.  

As we have made a conscious effort to eat nutrient dense organ meats, our overall energy level has continued to improve. I have seen an improvement in recovery after exercise as well as a decrease in PMS symptoms. Charlotte’s sensory and social issues continue to lessen. While we are still working on sleep issues with her, we are confident that she is becoming stronger and more nutritionally sound every day.

Just this week Mark Sisson did this post on nutrient deficiencies and listed Autism Spectrum Disorder as a symptom of Vitamin B12 deficiency. Vitamin B12 can only be found in animal products, and we have seen a tremendous decrease in Charlotte’s Autism-like symptoms as we have incorporated more B12 into her diet through grass fed and pastured rasied meats. See this post for more information.

If you decide to try the recipe, please give us your feedback in the comments below.

Autism Awareness Day

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I took Dana to Home Depot this weekend to buy our blue lightbulbs in support of the Light it up Blue Autism Awareness Campaign for Autism Speaks. She knows enough about Autism to know that her sister has been affected, but she wasn’t really clear about the term awareness.  I explained Awareness as people talking about and listening to those who have been touched by Autism as a way to bring about change and help the families that need it–just like we try to do with our website.

She nodded and said she understood. I initially felt good about our conversation and educating her about this grown up topic, but later I struggled with the term awareness and what April 2nd was supposed to accomplish. Does Autism really need more awareness?

People are aware. Just last week the CDC reported that Autism effects 1 in 88. That’s staggering. With those numbers, Autism will hit close to home, for many people. If it’s not your brother’s son or cousin’s daughter, it will soon be your child’s classmate, a coworker’s child, a neighbor down the street, or a child at the park.

People are aware. They are seeing it in their homes, schools, and community, and parents of children with other special needs wish their child’s issues were as widely known and accepted as those with Autism.

People are aware. So now what? What can I do about it? How can I make Awareness the way I described it to Dana–listening to those families who have been affected to bring about change.

The day is here. And with a small platform and a big voice, I have so much to tell you. What can I say on a day when everyone is listening that will make a difference?

It may not be life-changing or ground-breaking, but I feel like I’ve done my part today if I share the following things with you:

Toxins

The cause of Autism is unknown, but no one can ignore the daunting words like environmental toxins that swirl around the comments and chat rooms posted by moms and dads of Autistic kids. Toxins are everywhere and scary and they affect each child differently. It has been said that Autistic kids are canaries in the coal mine, letting us know that something in our environment is making the most sensitive very sick. Our experience tells us that toxins in foods contributed to Charlotte’s delays. Gluten, dairy, sugar, and soy were harmful to her system and caused neurological issues.

Removing these toxins improved her symptoms.

I can’t speak much for toxins in vaccines, but I will share this with you. The vaccine and Autism connection scared the crap out of us even before we had kids. Seven years ago when Dana was an infant the numbers were 1 in 166. That was enough for us to take alternative action. We were overly cautious and set up an alternative schedule for vaccinations for both girls (only 1 or 2 at a time/1 week apart). But despite our best efforts to avoid Autism, it was still handed to us.

That being said, Charlotte’s symptoms have always been very mild. She’s had only minor social delays with some repetitive language and sensory processing issues. She had no delays in receptive or expressive language and no significant motor delays.

It is our belief that if we had adhered to the standard vaccination schedule, her issues would be much more severe.

Support and Services

When Charlotte received a medical diagnosis of Autism in 2010, we were told that we would receive adequate support to get her what she needed, based on the information collected during the 5 hour testing process. This was not the case. While she had enough “deficits” to qualify for the label of Autism, she did not have enough “delays” to receive ANY treatment or services. We were referred to our local school district, whose tests indicated that her medical diagnosis did not match her scores for an educational diagnosis. In other words, she had the ability to learn and excel academically but she wouldn’t be able to sit still in her chair, do her work without interrupting other students, and would probably have trouble making friends on the playground.

We had to fight tooth-and-nail for her services based on the testing done at the time of her diagnosis. After four months of fighting with our insurance provider, we did get a contract in place for Occupational Therapy that helps tremendously with Charlotte’s mild motor delays, impulsivity, and sensory issues. The OT helps regulate her system so she can try out her new social skills, learn how to get along with her sister, and communicate with her peers.

Day to Day Life

We feel very fortunate to be where we are in this journey with Charlotte. We have overcome tremendous obstacles and taken control of her health issues while bringing the child trapped in sensory dysregulation and social anxiety out of her shell. We work hard to make sure she is feeling and acting her best every single day. We cannot let a day go by without checking to make sure we’re doing everything we can for her. Our meals, schedule, and life must be documented and planned to ensure that it works for Charlotte. Even small changes to her routine or environment can dysregulate her and turn our lives upside down.

With all of this in mind, please consider the following…

Autism is caused by environmental factors and affects the most sensitive of children.

Environmental factors like wheat, mercury, and milk may be harming our kids, but nothing will be done about it if it means loss of income for Big Food or Big Pharma.

No one can make money on a “cure” for Autism. Each child responds differently to his or her environment and each child must be treated and cared for based on their individual needs…there’s no pill for that.

Insurance companies are quick to diagnose kids on the spectrum, but turn the families over to school districts, who do not have funds or services to handle the increased numbers of children with needs.

Each parent who cares for an Autistic child must work diligently against the clock to protect their child from these environmental factors, while fighting for the services and therapies to help them.

I’ve done my part if you are now AWARE of what Autism really is…for our family, at least.

Food for Thought

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I frequently have conversations with other parents about our diet and how it has benefited our family. Now that we are fully mainstreamed and Charlotte participates in preschool, ballet, and swimming lessons, other parents are genuinely surprised and interested in the issues we’ve overcome. Most people want to hear about our successes and seem comforted and encouraged by the fact that food based intervention can help some Autism symptoms.

These encounters are wonderful, and I swell with pride at what Charlotte has accomplished and everything we’ve learned as a family. It would be lovely if the conversation ended there, but usually I get many more questions about what we eat, specifically what foods we avoid. And telling people that we avoid grains and most dairy is like telling people that we are from another planet.  [But this post is not about that–when I’m feeling more reflective, I’ll give advice on how to embrace this lifestyle and how to enjoy being the crazy lady that doesn’t give her kids Goldfish crackers]

If you’ve had one of these discussions with me, then you know I try not to push too hard. I respect each family’s current needs and situation. This has been a long process for us with lots of learning along the way. I typically don’t nerd-out in those conversations and say what I really want to say, but last night I got brave and talked about food addictions with some new friends. It was fairly well received, so here goes.

You would probably agree with me that sugar is addictive. Well, what we came to realize the hard way as a family is that everyday foods that contain gluten (wheat protein) and casein (milk protein) are addictive as well. The proteins bind to opiate receptors in your brain giving you signals of pleasure and telling you to eat more. That’s how foods like grilled cheese, pizza, and macaroni-and-cheese (all containing gluten and casein) taste so good and have come to be known as Comfort Foods.

Each of our opiate receptors respond differently to different foods which is why some people crave salty potato chips while others seek out the chemicals in a diet soda. Will Power doesn’t stand a chance when you’re trying to eat just one piece of pizza or quit your nightly visit to the freezer for ice cream–which is why eliminating these foods is so difficult and brings on awful withdrawl symptoms like crankiness, brain fog, and more cravings.

This explains why our kids love junk food and sugar so much. They get an immediate response that they recognize as pleasure. The foods taste good and they seek out more. Foods like vegetables and meat may not give the same pleasure signals. The cravings for processed foods are real and strong, and it plays out very simply in a child’s mind–I like this and I do not like that.

So hopefully it’s beginning to make sense why I advocate removing as much sugar and processed foods from your child’s diet as possible. It is a difficult but necessary task to getting them to open up to new foods and try different flavors and textures. We have seen incredible success by taking a slow approach to removing the addictive foods that were preventing essentital nourishment for Charlotte and Dana. When we were feeding them bread, pasta, and milk they would have never touched foods like Brussel sprouts, avocado, broccoli, kale chips, beets, and the loads of fruit that are now part of their regular diet.  It is so satisfying to enjoy these foods with them without bribery or punishment.

If you are considering the Paleo diet for your child, observe his or her food choices for a couple of days. Get information and see what needs to be addressed. Which foods is your child asking for consistently? What type of habits has he or she developed? What seems manageable to cut back on? Can you make any subsititutions for less addictive foods?

For more tips on cutting back on processed foods and incorporating different textures and flavors, see recommendations & advice. Also, please feel free to share any helpful tips that have worked for your kids in the comments.

Sources: http://www.marksdailyapple.com/your-brain-on-junk-food/#axzz1qcxWhE00

http://robbwolf.com/2012/02/15/carb-addiction-cake-is-the-new-crack/