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 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.

The wonders of coconut

If you are new to the Paleo world, then the word coconut may bring to mind the synthetic, overly-sweetened junk found in suntan lotion or a cheap pina colada, and if that’s the case, my hope is that this post will educate you about the wonders of this delicious and super nutritious food. Our family reaps the benefits of coconut products so often, that I think it is worthy of an entire post.

The coconut is a versatile nut that contains many uses and benefits. You may have noticed the rise in popularity of coconut water. It’s also been called “nature’s Gatorade”. With naturally occurring electrolytes that our bodies need to recover from exercise or any strenuous work, it also contains salt, potassium, and magnesium.

I pick up my favorite brand at my local grocery store and use it as an afternoon refreshment on a warm day. Sometimes I add it to my water bottle and sip it after a workout (or just an otherwise exhausting day) for a boost of energy and hydration.

When we first began using coconut oil for cooking, I knew that there were significant health benefits, particularly for digestion and stomach issues. Since we believe digestive issues were the main cause of Charlotte’s delays, we were eager to use a product that might help heal her stomach.

Based on our success with it, I have known for a while that I wanted to share information about coconut products on this blog. I found a podcast on Underground Wellness with Dr. Bruce Fife, author of the book, Coconut Oil Miracle. I listened to the podcast and took notes as to learn more about coconut products and share with you how coconut oil has been beneficial in healing Charlotte’s gut and brain issues.

Here’s what I learned from Dr. Fife on the podcast, as it relates to overall health:

*Coconut oil is a healthy Saturated Fat that is heat stable. This means you can cook with it at high heat, and it will not go rancid and create free radicals in the body, which promote premature aging.

*Coconut oil stimulates the thyroid, regulating metabolism and increasing overall energy.

*Coconut oil has been known for its healing power. Being a MCFA (medium chain fatty acid), it has anti microbial properties, meaning that it helps break the lipid coat of bacteria and viruses and allows the body’s white blood cells to work more effectively.

*Coconut oil promotes healthy gut flora by allowing the friendly bacteria to flourish in the gut and killing any microorganisms or parasites that are not beneficial to the gut lining. It also kills candida (yeast overgrowth) in the digestive tract.

*Of particular interest to me was information about the benefits of coconut oil and Alzheimer’s. Dr. Fife mentioned that coconut oil provides ketone bodies which promote healing in the brain, and that many Alzheimer’s patients have had a regression in their symptoms after using coconut oil. Any kind of brain healing sounds good to me.

*Many more unbelievable health benefits are listed on Dr. Fife’s website.

What do you do with coconut oil?

Dr. Fife recommends drinking 1 to 3 tablespoons a day of melted coconut oil for an energy boost, but if you want a slower start, you can substitute coconut oil for any cooking oil like canola, corn, or vegetable oil.  We make a lot of skillet meals where we saute endless combinations of meat and veggies in coconut oil. In addition, some of our favorite recipes using coconut oil include Better Butter Chicken, plantain chips, or even sweet potatoes sliced like fries and cooked in coconut oil. (Make sure you wear old clothing or an apron when cooking with coconut oil since stains are difficult to get out of clothing)

Our favorite brand of coconut oil is the Extra Virgin Gold from Label Tropical Traditions (above). It smells and tastes delicious. We buy the gallon size and use several times per day, and it lasts about 4 months.

I also keep a store-bought brand (above) around the house in case I run out. While it doesn’t taste or smell quite as spectacular, it’s a good substitute.

Are there benefits to coconut milk?

Coconut milk is the meat of the coconut crushed with added water and strained through a cheesecloth. You’ll find it in its least processed canned form in the Asian or Thai section of the grocery store. It serves as a base for many Paleo sauces and soups.

This is not to be confused with carton coconut milk easily accessible at most grocery stores. With coconut milk as the base, many stabilizers and sweetners are added, increasing the drinkability but reducing the health benefits.

What about coconut flour?

If you do any gluten-free baking, you may notice that coconut flour is often substituted for gluten laden flours. Coconut flour is the product of the dried and ground meat of the coconut. With lots of fiber and no phytic acid, the flour is ideal for Paleo baking. Our hands-down favorite dessert for birthdays or other special occasions is the coconut cake with coconut cream cheese frosting in Bill & Hayley’s book.

Check out any of the Paleo recipe sites in Paleo Community for many more ideas of how to make these wonderful products a staple in your kitchen.

Coconut oil & the skin

Dr. Fife mentioned in the podcast what we already know to be true. Coconut oil is great for the skin. My skin tends to be very dry, and I recently substituted my expensive face moisturizer for coconut oil with success. I immediately noticed less inflammation and puffiness due the detoxifying and healing quality of the oil. For severe winter dryness, I recently switched to this product from Tropical Traditions.

Clearly, we have bought into the health benefits of this food. In addition to cutting out grains, we feel that incorporating coconut products into our diet has been key to improving our overall health. If you are thinking about making a change to the Paleo lifestyle, picking up a coconut product in replacement for one of your other products may be a manageable first step.

For more reading on how adding healthy fats to our diet has helped Charlotte’s brain and stomach development, see this post.

My 2012 Paleo Resolutions

One of the things that I love about the Paleo lifestyle is that it is not a one-size-fits-all approach. Shortly after beginning our journey, Chad and I realized we had different tolerances and responses to different foods. There is no such thing as Perfect Paleo, and we have accepted that each person in our family is on a unique journey of listening and responding to their body’s needs appropriately. My personal journey with Paleo includes a sense of responsibility to lead my family on this endless quest for better sleep, less stress, and cleaner food.

This Christmas season we have been inundated with treats in our environment. After indulging in more than a few non-Paleo and even Paleo treats, I am reminded of where I am on my journey. Even a small amount of sugar and refined flour sends my blood sugar on a wild ride, leaves me feeling weak and shaky, and depletes the healthy energy that I need to care for my kids and run my household.

Thankfully, Jan 1 is quickly approaching, and I would be lying if I said I wasn’t craving schedule, planned meals, earlier bedtimes, and cleaner foods that make our family function optimally. In addition, I’ve had a few Paleo resolutions rolling around in my head for a while that I think are reasonable and appropriate goals for us, sometime in 2012.

1. Start a Paleo blog–this is nearly checked off. While I was planning to start this blog when Charlotte entered Kindergarten, I jump started it to help others and to kick my stress management skills into gear by holding myself accountable. I hope to be honest and accepting and steer clear of preaching or judging.

2. Make more homemade bone broth & sauerkraut–this is a bit of a confession. How can I consider myself a Paleo blogger if I haven’t made these Paleo wonders that are full of healthy nourishment that help heal a leaky gut? Diane and Liz, I’ve been listening…so stay tuned for posts on these super-Paleo foods.

3. Darken our bedrooms–This has been on the list of home improvement projects since I read Robb Wolf’s book, but after listening to podcast from Underground Wellness with T.S. Wiley, I learned how sleeping in dark room facilitates melatonin and Vitamin D production, therefore positively affecting insulin, serotonin, and other key hormones that make us feel good. Charlotte’s fear of the dark has lessened significantly, so I need to grab this opportunity for better sleep and regulation with her while I can.

4. Less TV for the kids–With winter illness and icy weather running rampant in our household for the last month, TV gazing has become more prevalent for the kids as they are looking for a way to wind down after hectic schedules, heal from runny noses and sore throats, and generally stay out of mommy’s way while she runs around like a crazy person during the holidays.

Mostly importantly, I need to remember to be kind to myself and enjoy our journey. A few symptoms of dysregulation and falling off the Paleo wagon only give us more motivation to take another step toward overall wellness, as defined by us.

Healthy Fats

I’m going to start this post with a disclaimer: I am not a doctor. I am not a scientist. I am a mom who has recognized substantial positive change in my child when altering her diet. I am attempting to take my experience and match it to some Paleo based science/research. Some of the information you read in this post may sound contrary to popular opinion. 

Why we think eating fat has benefited Charlotte:

*She has issues with her nervous systemWe know that she has Sensory Modulation Disorder (SMD), which is one of the three primary diagnostic groups of Sensory Processing Disorder. She is over or under responding to sensory stimuli and often is seeking sensory stimulation. Yes.

This group may include a fearful and/or anxious pattern, negative and/or stubborn behaviors, self-absorbed behaviors that are difficult to engage or creative or actively seeking sensation [source]. Definitely. 

All of this dysregulation is going on in her nervous system and prevents her from responding appropriately to sensory input. In our world this looks like things that take a lot of effort for her….trying new food flavors and textures, following directions, getting dressed, knowing when she needs to go potty, etc, etc.

*The nervous system sends signals to cells in different parts of the body and ultimately controls the body’s functions. In addition, “the evolution of a complex nervous system has made it possible for various animal species to have advanced perception abilities such as vision, complex social interactions, rapid coordination of organ systems, and integrated processing of concurrent signals. In humans, the sophistication of the nervous system makes it possible to have language, abstract representation of concepts, transmission of culture, and many other features of human society that would not exist without the human brain.” [source

Essentially, her nervous system makes or breaks her comfort level in the world. How do we make it stronger, faster, better?

*Vitamin B12–is a water-soluble vitamin with a key role in the normal functioning of the brain and nervous system. Vitamin B12 is found in foods that come from animals, including fish and shellfish, meat (especially liver), poultry, eggs, milk, and milk products [source]. Without even realizing it, when we began the Paleo diet and introduced more meat and less grain, we were strengthening her nervous system.

*Energy–I was recently reading a post from Mark Sisson of Marks’ Daily Apple about Mitochondria. Need a refresher of tenth grade biology class? In very simple terms…mitochondria are the power plants of a cell. They generate the chemical energy the body needs for a range of cellular processes. I was definitely intimidated by this subject matter, but I stuck with it and applied it to my observations of Charlotte’s behaviors. It makes sense to me that giving her cells fatty acids from food to use as a source of fuel for the cells, rather than glucose (sugar/carbs) would lead to more energy, increased overall alertness, ultimately leading to increased mental and physical strength and development. More specifics on all of this here.

*And the great news…I’m not alone! I found this great site on Autism Treatment talking about Ketogenic(higher fat/lower carb) diets and how they may help kids with Autism.

But wait…there’s more…

*Essential Fatty Acids–When we first started on the Paleo diet, we helped our kids kick their sugar and carb addictions with delicious fruit smoothies. We loaded up our Blendtec blender with fresh fruit, frozen strawberries and blueberries, and even got crazy and added veggies like avocado and spinach. It’s funny now to remember that Chad and I had to both stand in front of the blender and secretly add these ingredients the girls were so terrified of at the time. We also secretly added Cod Liver Oil, which is basically Omega 3 in liquid form with Essential Fatty Acids DHA and EPA. All of the other flavors of the smoothie masked any fishy taste from the oil. Again, it’s no surprise that we saw changes right after starting this regime. Omega-3s aid circulation by naturally thinning the blood, fight systemic inflammation, support brain function and ease symptoms of depression, anxiety and even ADHD [source]. Currently, we try to serve fish at home 1-2 times per week to provide these essential fats in the form of food. If we miss a week, I’ll give them a glass of orange juice (a special treat) and add a 1/2 tsp of Cod Liver Oil to each drink–and I don’t have to hide it anymore.

*The fat in animal protein has become an essential part of Charlotte’s diet. We have no qualms sending bacon with her to preschool as her snack and making sure she eats all of her skirt steak before giving her more sweet potatoes. I’m sharing this with you because I only wish I had known this sooner. See Our Story for our a detailed account of how her sleep issues shortly after birth were a clear sign that Charlotte need more fat in her diet. Conventional Wisdom has scared us away from natural fats that our ancestors have been eating for thousands of years. It’s only in recent history that we have shifted away from this powerful energy source and so many brain based issues have arisen. 

*One final note on fat–the Paleo diet recommends pastured-raised 100% grass-fed beef as the best source of animal protein and fat. Grass fed beef contains Omega 3s (discussed above) and Conjugated Linoleic Acid, which is another good for you naturally occurring fat. Grain fed beef gets a bad rap in the Paleo Community, mostly because the cattle are fed grain/soy/corn in a feed lot to fatten them for tastier consumption. It makes perfect sense that grain fed beef goes against what Paleo people strive to consume. However, it can be expensive and hard to find. As you begin your Paleo journey, you may be encouraged to learn that we have only recently been able to acquire grass-fed beef and feed it to Charlotte. All of the meat that she thrived on in our earlier Paleo days was Costco-bought, grain fed. If you are holding out for cheaper or more accessible grass-fed beef, grain fed is an acceptable substitute and did our family right for a short time.

Pick and Choose

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I’m all about saving money using meal planning, which is what prompted me to watch a Yahoo News Video entitled Feed Family for $15 a day, even though I had previously sworn of watching/reading these so-called-News-posts as a silly indulgence that were sucking up too much of my precious computer time.

Nevertheless, it was probably entertaining to watch my facial expressions as the tips for saving money on family meals unfolded. The following tips from the article caused a pleasingly surprised expression:

*Intentional Shopping–which means make a menu, make a list, stick to it. Bingo! Almost verbatim to my Recommendations and Advice.The food saving expert also states that planning ahead for shopping trips can save up to 20% on impulse or unplanned purchases. She also mentions when meal planning, consider leftovers and the nights you will not be home. Beautiful.

*Freezing in portions–I whole heartedly agree with this, especially for meat. This is also helpful dinner/meal planning and additionally for my mid day meals, which I stash a few emergency pieces of protein in a separate part of my freezer for days when there’s limited leftovers available for my lunch. Also, she mentions shopping from your freezer first before loading up at the store on meat. Yup.

*Using leftovers–the food saving expert recommends taking leftover veggies and using them in an omlete or egg scramble the next morning. I agree….except when she gets to the part about adding rice and tofu to vegetables to save money. My mouth and eyebrows are contorting in various angles as I’m wondering…where’s the beef?

At this point, anyone approaching my laptop should back away slowly because my expression displays a confused and disapproving scowl at the following advice for feeding one’s family….

*Going Vegetarian once or twice per week. Nope. This will only mess with your insulin levels and leave you hungry before bed or send you into kitchen for a late night binge on chips, crackers, ice cream or some other processed food to fill in what the healthy protein and fat should have done for you. Eat meat.

*Whole grain pasta as a cheap base for meals. Oh My. I have made it clear in previous posts how eating pasta ruined our health. The gluten and starch caused significant stress on our digestive systems, my adrenal glands, and Charlotte’s neurological development. No, thank you.

*Beans and legumes as super stars. Wow. She recommends cooking them to hydrate them. True, but  legumes contain lectins and cooking them makes them edible but still detrimental to our health. Feeding the Rotini with Legumes to my family of 4 would cause stomach upset, gas, and bloating. Misery.

My point to this post is to approach mainstream advice for feeding your family with apprehension and patience. Despite the rising numbers of individuals with diabetes and insulin resistance, celiac, and many other food based disease, this information is still being presented as the optimum way to feed our family and save money. Beware of Big Food companies that lessen the price and quality of processed food at the expense of making us sick.

Find the Yahoo video here. Or better yet, stick to healthy recipes and sound advice based on ancestral health that can be found on the sites listed in Paleo Community.