Our Secret to a Delicious Liver Burger

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

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

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/

 

Living Outside Your Paleo Bubble–kids birthday parties

We recently had a birthday party for Dana and Charlotte. It was a relatively small gathering for a few friends and family members at our home. We served lunch, sang happy birthday, and enjoyed cake. No one would ever know that our family, and specifically, our kids ate a diet that was different from any other child at the party.

The lunch spread included deli trays of ham, turkey, roast beef, salami, cheeses, and other antipasto treats like olives and sun-dried tomatoes. We did provide some dinner rolls for those who chose to make sandwiches. The crowd favorite was an enormous bowl of freshly made guacamole. We provided corn chips (gluten-free) and veggies for dipping. There was also lots and lots of fresh fruit. We received many comments on how fresh and delicious the food was. It was not limited to a Paleo diet, as most of our friends and family members eat grains and dairy, but we were still able to provide the birthday girls with a delicious lunch of their favorite Paleo foods.

I can assume that the positive comments that we received from our friends and family were based on the fact that our fare was considerably different from a typical meal served at a  kids’ birthday party. Foods of convenience like pizza or frozen hot dogs or hamburgers are the mainstay at kids’ birthday parties these days, and if you are trying to raise a Paleo family, you recognize what a challenge this is.

In the defense of other parents who choose throw a *traditional* party for their child with pizza delivery and store-bought cake, it was a lot of work and a significant expense to provide the spread we did. We woke early to prepare food, made a trip to pick up the deli trays, budgeted the expenses, and planned ahead to find a gluten-free cake that would be okay for the girls to eat. Our situation and lifestyle demands this type of planning and preparation.

We take that same mindset into modern-day parties and social events outside of our home when we know that there are going to be limited options for our kids to eat. Being prepared to attend a birthday party or social event with your children is the same as being prepared to go anywhere. You pack your child’s homework and anything they need for the day when they go to school. You pack a suitcase for going on a trip. Before a birthday party, you even buy and wrap a gift. Thinking about the food that you and/or your child will eat at that party is an often missed but crucially important next step.

Here’s some things to think about when you RSVP for your next kids’ party:

Meal or Entrée

*Email or call the parent and ask what they are planning to serve at the party before you attend. Explain that you are making some changes to your child’s diet and you want to be prepared. You may get lucky and have grilled sausages or barbecued chicken with fresh fruit and veggies.

*Feed your kids a big breakfast or lunch before attending a party where the entrée is not Paleo approved. If they feel full and don’t have a strong desire to eat, allow them to nibble on a few pieces of protein and spend their time playing and enjoying the party.

*Bring your own food. Pack a large snack or a lunch box for your child just as you would if they were going to school. If you feel the need, reach out and explain your child’s special diet. In my experience, this typically does not offend a party host or hostess, especially if you’ve taken care of the meal yourself.

Cake or Dessert

Oftentimes, the cake is the most sought-after part of the party for kids. After they have just consumed pizza or other convenience food, they can’t wait to wolf down a store-bought cupcake loaded with unrecognizable dyes and flavors, not to mention gluten and sugar.

My trick for the cake part of any party is providing a substitute treat that my kids love to eat.

Our family favorites include Curious George Bars and Tootsie Pops. These products including are sugar-laden, but typically gluten-free. (They may not be labeled as such as they may be produced in a processing plant that also processes wheat–please check with the product manufacturer if your child is particularly sensitive) Other options include homemade Rice Krispy treats or a homemade grain free dessert. Our favorite cookbook and website for delicious homemade grain free treats is from Bill & Hayley at the Food Lover’s Primal Palate. We all love the Coconut Cake with Coconut Cream Cheese Frosting in cupcake form.

Preparation–for the kids

This post wouldn’t be complete without a note about the uniqueness of your kids. After living Paleo for 2 years and attending numerous birthday parties with a 4-year-old and 7-year-old, I can safely what works for us, but I can obviously not predict what will work for your family.

Some kids are more sensitive to eating something different from the other kids. Other issues may be around giving up favorite foods and sacrificing party foods may just be too much, too soon. If you are leading your family on this Paleo journey, only you know what your kids can handle.

That being said, talking to your kids before any non-Paleo outing and setting expectations is a good rule of thumb. Understanding the needs and listening to the concerns of your kids before you are stuck in a no-win situation at party mealtime goes a long way. With Charlotte, we often show her pictures of where we are going, show her the food we have packed for her to eat, and let her know she has her own treat instead of cake or a cupcake that will “give her a tummy ache.” Dana can tolerate more non-Paleo treats than Charlotte can, so we often compromise with her. She’s a smart and sassy 7-year-old and has learned what we can live with as parents and when we put our foot down. She recognizes that this is our lifestyle, but we also try to be sensitive to how she feels eating something different from other kids. If she really wants a cupcake or piece of pizza, we try to discuss it before we arrive so we are all on the same page.

All of this may seem overwhelming and intimidating at first, but it does get better. Try to be as consistent as you can with your kids while still understanding that they are just kids, after all. As you progress with eating more Paleo foods, they realize that eating birthday party foods makes them feel yucky and cranky. Consistency with your food choices also helps your friends and family members understand that you are making conscious health choices for the sake of your child. Over time, they may become more sensitive and accommodating to your dietary needs. Until then, preparation and practice are the keys to success.

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 Power of Paleo

Over the weekend, a friend of mine was reading through my blog on his iPad. I was nervous and fidgety, as I am when anyone is reading my writing. I recognize that my writing is personal and thoughtful, and I also knew that this touchy-feely success stuff is really not his style. I was setting myself up for some harsh criticism, or worse, to be the butt of an ongoing joke in our circle of friends. Nevertheless, I took a risk and held my breath. After many long moments, he finally laughed and nodded.

“I like that you have a plan and stick to it. You’re focused and you’re not going to let anything stop you.” He was of course referring to the lazer-like focus we have with adopting the Paleo diet and how it has become an obvious lifestyle choice for us. He read the Come Hell or High Water message loud and clear.

His comment stuck with me as I circled my way through my favorite Paleo blogs this week. I looked at all of the information, questions, and success stories through a new lens and really noticed themes of support, committment, and dedication to this way of life. Each story is so familiar to ours–loss, hopelessness, and despair giving way to progress, success, and hope. Inspiring stories of the fearless and focused overcoming Diabetes, PCOS, depression, anxiety, and weight-loss.

I identified with the many individuals who experienced secondary growth in harder-to-measure but easier-to-see achievements–emerging confidence, strength, and a sense of purpose that may have never surfaced due to the bullies on the playground, flawed Conventional Wisdom and profit-seeking Big Pharma.

It’s easy to see why so many of us feel this success. The leaders of this ancestral health movement empower their armies with information and answers that were there all along but are now are so easy to see. Science that stay-at-home moms like me can understand. Messages that denounce Complacency, but Encourage your best effort. Responsibility and Accountability with Consistency and Respect.

Each of us Paleo soldiers are leaning to read the messages of our bodies like a road map to better health. We reach our personal measures of success and become so empowered that when we find the strength and courage to share our stories with the world, we know that we will be welcomed with open arms into this powerful community.

While the Paleo diet has given Charlotte her health and future, the Paleo community has given me the confidence to help others. So I will say it loud and proud, without getting fidgety and apprehensive, and I believe that our story will be accepted and respected by even the toughest of critics.

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.