A Perfect Storm

A few weeks ago, I was having a conversation with one of Charlotte’s Occupational Therapists about her defiant behavior. I had been noticing a pattern that went something like this: change in her routine due to holiday/illness/schedule, inappropriate sensory seeking behavior, Chad and I jumping in to regulate sensory needs, defiant and uncooperative behavior that diminishes over time. The cycle wrecks havoc on my mental state as I feel relief and exhaustion from the tide of dysregulation just passed and restlessness at the thought of the next swell coming upon us.

As I was talking to her I felt like an old weathered sea captain regaling his tales, vividly describing each cycle as a storm more difficult to bear than the last….with a thoughtful and far-off expression I discuss The Dysregulation of ’11…when we moved from one house to another…….oh, yes, then there was the Starting School Dysregulation last August….that was a really bad one….many nights of bad sleep, impulsive behavior…..and then there was the one just a few months ago when her preschool teacher left….horribly defiant….

She smiles patiently while I carefully explain each harrowing experience after another, all the while, I’m searching for appropriate amounts of validation and sympathy. She finally nods and concludes that this is all “normal”. I really don’t like that word and stare at her as if that answer is completely unacceptable. She squares herself in her chair to look at me and says, “It’s a good thing. The nervous system is resetting itself in preparation for more growth.”

I’ve been carefully considering the therapists words over the last few weeks, as illness stole our family’s sense of routine and order, and we have begun a new and mild cycle of dysregulation. It’s mild in the sense that her sensory issues are more under control, but it has been difficult in the sense that pragmatic speech has been affected. We’re hearing more scripted language, seeing less eye contact, and generally feeling less connected to her. This certainly doesn’t sit well with me as we can’t get Speech Therapy to save our lives, and my anxiety switches begin turning ON as I’m feeling helpless and out of control.

I force myself to come out of the haze of worry and fear and begin to put my concerns into constructive questions. At the next meeting with the therapist, I find myself asking questions like, “now that she’s more sensory regulated, will her patterns of dysregulation look more social and speech related?” Again, she calmly nods Yes. We discuss options for how to regulate her when she seems socially disconnected.

A few days later I’m reading The Way I See It by Temple Grandin on my Kindle and this quote strikes me…

“the best thing a parent (of a newly diagnosed parent can do) can do is to watch their child without preconceived notions or judgments and learn how the child functions, acts, and reacts to his or her world.” (parentheses mine)

I suddenly realize that I can take these two pieces of information and put them together to calm myself and help Charlotte. With careful practice, I begin to observe without my veil of anxiety and worry. Instead of squirming around her nonsense questions and comments, I find her eyes with mine and tell her that she’s not making sense. I coach her into finding better words to explain what she’s thinking and reward her for her efforts. It helps, and she seems relieved that I find this connection with her. She’s excited to tell me more about Max and Ruby’s adventures or what she did at school. She wants to ask what we’re doing tomorrow and when is her birthday. I find my own connection with her and ultimately find my peace of mind.

I tell myself that in giving her the words and safety she needs to communicate, she will experience a new surge of growth. The cycle will complete itself, and the next one will bring new and different challenges. My anxiety continues to rest at bay but these thoughts allow me to breathe a little easier. I remind myself that it just takes time and patience.

I ease up from bracing myself for the impact of the storm and ride the waves as if I’m on the voyage of a lifetime.

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My favorite things…

I was never a huge fan of Oprah, but I do remember that she had an episode every now and then where she shared her favorite material possessions with her viewers. I hate to sound like a Bitter Betty, but really? What is the point of this?  Except making extreme amounts of money for some company that manufactures T-shirt bed sheets and making the rest of us feel envious for her over-the-top lifestyle, it seems a little shallow and self-absorbed to me.

So, here I go with my list of favorite things, which are quite a bit different from Oprah’s. These really have become things that we couldn’t live without. Chances are you won’t be jealous of my lifestyle after reading these and hopefully you’ll actually find some valuable down-to-earth products that will help you make it through a difficult day.

1. Microwavable bacon–okay, I know that hard-core Paleos may squirm at his staple in our household, but school day mornings are hectic and I am solo getting my kids dressed, fed, and out the door. I’ve written about how some mornings with a dysregulated 3-year-old can be disaster, so here’s to something easy and yummy. We get ours at Costco for about 12 bucks.

2. Applegate Farms Hot Dogs….since we’re talking about meat….Applegate Farms  grass-fed beef hot dogs are another quick and easy meal option. They’re not cheap (Trader Joe’s sells them for about $5/package and I’ve seen them at Whole Foods for $7-$8) but you pay for grass-fed meat without nitratres or preservatives.

3. Tropical Traditions Coconut Oil…hands-down one of the most valuable products we use. I firmly believe that coconut oil has healed Charlotte’s gut in a way that few other foods could. We buy the gallon size every 4-6 months and use this to cook everything from sweet potatoes to eggs to reheating leftovers. It also makes a great skin mositurizer and deodorant.

4. Trampoline–I recently asked Charlotte’s Occupational Therapist for one thing I could do to keep her regulated over the holidays. I was surprised to hear her say bounce-and-crash. We have always encouraged her to jump on the trampoline to gain proprioceptive input, but I recently added crash pillows for her to get the added compression sensation she is craving.

5. Benik Compression Vest–When Charlotte attended a center-based program last year, one of her teachers suggested a compression vest to help her sit still during circle time. It has become so useful and frequently-used over the past year, that I can easily tell when she needs it.

6. Sleep Sheep–My sister recently had her first baby, and I sound like a broken record when she calls to talk about the baby’s sleeping, “Do you have the sheep by her head? Is it turned up really loud?” We laugh about it now, but having soothing noise for babies or dysregulated sleepers of any age is priceless. We also use it at rest/naptime, setting the timer for 45 minutes, Charlotte knows she must rest in her room until the sheep turns off.

7. The vegetable box, as it’s affectionately referred to in our house, is our weekly CSA allotment. It often has fruit or non-vegetable items, but the all items are delicious and fresh, and it also keeps our meals unique and our fridge stocked with healthy fruits and veggies.

8. Eggs. A few months ago, I began to seek out fresh local eggs after the Costco Organic Free Range Eggs were looking pale in color and small. I was able to track some down from a friend who raises chickens. The color and size of real eggs is unbelievable, and I feel really good giving my kids such a visually nutrient-dense food.

9. My iPod–okay, so this one probably sounds materialistic and non-Paleo, but it wasn’t until I recently lost my iPod that I realized how much I loved mine and needed it. During Charlotte’s twice weekly therapy sessions, I take a brisk walk and listen to podcasts from my favorite Paleo people. They help keep me up to speed on my Paleo knowledge, in addition to making me laugh, and giving me motivation to keep on truckin’ on our Paleo journey. (Oh, and yes, I do get much teasing from my friends and family about what a nerd I am for using my ipod for Paleo podcasts versus listening to music like most people do)

10. Seat cushions (sorry I couldn’t think of a fancier name) I recently ordered them from Therappy Shoppe, and I could do an entire blog post about how when kids are comfortable in their chair during meal time, they eat better! Mealtime is much more pleasant without the wiggling and finding any excuse to get up from their seats.

This worked especially well for Charlotte because she is considered a “sensory seeker” and needs to feel the seat under her to be comfortable.

Stayed tuned for more of my favorite things because as I wrote this, I thought of about 10 more things I could’ve added……hmmm….maybe I’m more materialistic than I thought.

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.

Celebrations and triumphs

I think one of the best parts of being a parent is celebrating your child’s triupmhs over their challenges. Water is a soothing sensory input for Charlotte, so swimming lessons were a natural fit. As she’s gotten older and moved up the levels, she has had to work harder on listening to her teacher, waiting her turn, and using physical strength to move her body in the water. It’s an amazing feeling when the soothing input becomes an instructional tool and practice for real life. Today she graduated from holding her body in a straight glide to gliding with her kickers. I’m so happy to celebrate this achievement with her!