Happy 6th Birthday Reine

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Reine turned 6 years old on Nov 2. Oh, how I wish we could have thrown her a HUGE party filled with kids of all ages, family galore, millions of balloons, cake, ice cream, decorations everywhere, different kinds of party games. A celebration that most children dream of and parents cringe at. The excitement, noise, and all things geared towards the birthday child. The reality for us was far different then what many imagine.

First thing Reine did was pick out her outfit for the day. I no longer tell her what she can and can not wear. If she wants to wear a pair of hug pants with shorts over top and 3 hug tank tops and a long sleeve shirt then that is what she wears. If it matches great, if it does not, then it doesn’t. I want her to take pride in her decisions. Frankly, I have more important battles to pick then what she wears.

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Two hug tanks, long sleeve shirt, leggings, denim skirt

Reine opened up her presents at about 6:30-7:00am. This was the only time that the entire family would be home at the same time while Reine was awake. Each present was hand picked with Reine’s needs in mind. We had no doubts that she would love each one. There were 5 presents in all.

  • Light Bright
  • Mummy cat book
  • Rolling luggage set
  • Barbie head
  • Educational game

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Her older sister took the morning off of school to spend it with her snuggling and playing with her birthday presents. We worked it out so that when I took big sis to work, my Hubby would come home to spend the afternoon with Reine. Again in a very relaxed manor. The transition from one person to the other was seamless. We told Reine what was going to happen before it happened. This way she knew exactly to expect.

My Hubby and I took Reine to Toys ‘R’ Us (to spend a GC her uncle gave her) in the evening after we ate dinner. This trip we decided needed to be no more than 20-30 minutes long as we did not have Reine’s headphones and iPod. Hubby had the brilliant idea to speak with Reine on the way to Toys ‘R’ Us to see what she wanted to buy or any areas that she really wanted to look through. We chose to go an hour before the store closed as we knew the store would be almost dead. We moved into those areas of the store that Reine was interested in the most first. We kept a VERY close eye on Reine. We saw that after 15 minutes she was getting over stimulated. We began to gather her purchases and head to the register. I paid for the items while Hubby took Reine out of the store.

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After Toys ‘R’ Us, we went to the grocery store. She and Hubby stayed in the car while I bought her an all natural ice cream she LOVES and balloons. We chose ice cream instead of a cake as a way to still celebrate her birthday but to keep her as calm as possible. I promised her that I would make cake balls this weekend for us to enjoy. We sang “Happy Birthday” to her as she beamed at the 7 candles glowing in a small bowl of ice cream. Then it was off to bed where I rubbed her back, arms, and hands for several minutes before she drifted off to sleep.

Candles in the ice cream.

Candles in the ice cream.

The entire day was planned around Reine’s needs. Every decision was done in such a way as to try and not overstimulate her. We had to explain to her all day that it was still her birthday and would remain so until she woke up when the sun did and that the next day still meant that she was 6 yrs old.

Despite all of our best efforts, the next day was a VERY hard and LONG day. Reine had meltdown after meltdown. I spent most of the day applying some form of deep pressure to Reine and trying to calm the beast that being overstimulated causes her to become.

Autism is not for the faint of heart!

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Reine’s Diet

When people find out that Reine has autism there are several comments we are guaranteed to hear EVERY. SINGLE. TIME.

  • She does not look like she has autism. She must be high functioning.
  • Don’t worry, they will find a cure for her horrible disease soon.
  • I just gave to Autism Speaks. They really are an amazing…..
  • She is gluten and dairy free right? Jenny McCarthy says……

Since Reine’s eating habits seem to leave everyone in awe, I figured I would do a blog post about it. I hear constantly how lucky we are. I used to believe that it was just dumb luck. However, this REALLY upset my Mom In Law (AKA Mom). One night she really let me have it. I think she was even caught off guard by it. But she seriously made a lot of sense and had very valid reasons to back everything up. She told me that it has nothing to do with luck and everything to do with me. It is my stubbornness, tenacity, creativity, constantly thinking outside of the box, and sometimes even utter insanity (from lack of sleep) that has gotten us where we are today in regards to Reine and my family. Seriously, my Mom will be so proud to know that she is getting through to me!

We hear constantly from our specialists and doctors that they wish their other patients would eat the way we do and use the cleaners we use. I also hear that I need to teach others about the importance of diet and autism all the time. While I can not speak for others in regards to their child’s diet, household products / cleaners, and autism, I can speak about my family’s choices and Reine’s autism.

With every specialist we see, diet is usually the second thing talked about. Sadly, medication is generally the first. We have yet to hear that Reine’s diet is anything less than stellar. We all eat the same diet in my home. It makes my life so much easier. We eat a Real Whole Foods diet with the Feingold Diet incorporated into that.

DISCLAIMER BECAUSE I AM SURE I AM BOUND TO PISS OFF SOMEONE WITH THIS POST….

I HOLD NO DEGREE IN CHILD NUTRITION, PSYCHOLOGY, PEDIATRICS, MEDICAL, OR ANYTHING CHILD, AUTISM OR SENSORY RELATED. THIS POST IS ABOUT WHAT WE DO IN MY HOME AND OUR DIET. WHAT YOU DO WITH THIS INFORMATION IS ENTIRELY UP TO YOU. EVERY CHILD ON THE SPECTRUM, WITH SENSORY PROCESSING DISORDER, OR ANY OTHER EATING DISORDER IS UNIQUE. WHAT WORKS WITH REINE MAY NOT WORK FOR ANY OTHER CHILD AND VICE VERSA.

Real Whole Foods Diet

We eat a Real Whole Foods Diet. No, it is not a diet based on the grocery store chain Whole Foods (although we are known to shop there). Yes, I have been asked that more than once.


It is a diet that I would define as the following….

  • Food in its most essential, pure and basic form.
  • As non processed as we can get it.
  • Fruits and veggies
  • Whole milk, yogurt, cheese and butter
  • 100% Whole Wheat or Whole Grain
  • Seafood
  • Meats and poultry without unnecessary antibiotics
  • Natural sweeteners like honey or 100% maple syrup in limited amounts
  • Seeds, nuts, popcorn
  • Minimally processed drinks such as milk, 100% juice, coffee, teas
  • Healthy oils
  • Beans and legumes
  • All boxed or canned items must have 5 ingredients or less in them. I must be able to pronounce the ingredients and know what they are as well as what purpose the ingredients serve.

We personally prefer to take the diet a step farther than some do.

  • All our meat and poultry is from local butchers and local turkey farms.
  • Our eggs are from a local farmer that we have a contract with.
  • We go to local farmer’s markets and local orchards any chance we get. We have a couple of stores that also offer local crops that we try and take advantage of.
  • Our maple syrup is made local.
  • Our seafood is fresh, wild caught, local if possible and must be US caught.
  • Not everything that we eat or drink is organic. We have spoken with many of the places we get our foods from about their practices in depth. They are not certified organic. Then again neither is my home garden. NOTHING is used in my garden. You can not get more “organic” than that. Yet I am not allowed to call it organic because I am not certified with the government.
  • We make almost everything from scratch.

Feingold Diet
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The Feingold Diet is an elimination diet typically associated with ADHD. However, many find that they benefit from the diet (my entire family included). Here is the super quick breakdown of the FG Diet. The theory behind the Feingold Diet (FG) is that certain foods or food additives cause unwanted or uncontrolled behavior in certain people. Hyper activity being one example. By removing these foods and additives from your diet permanently, the unwanted and uncontrolled behavior typically disappears. You eliminate certain foods along with everyday products (deodorants, perfumes, etc) containing the artificial additives for a minimum of 8 weeks until your child’s behavior reaches what is called baseline. Baseline is when you have achieved a desired behavior from the child for several weeks. Once baseline is reached, you begin to add the foods back in one at a time. You are looking for a reaction (behavioral changes) in the child. If they react, you remove the food from the diet and try it again once they hit baseline again. If they continue with the negative behavior, the food item is considered a trigger food for them and should be avoided. The artificial additives are removed permanently. This often includes household, beauty, and cleaning supplies.

Many believe that FG is a very “healthy” diet. I am going to go on record as saying that I do not consider FG a “healthy” diet. Many still eat a ton of processed foods on the diet. The processed foods just have a better chemical shitstorm in them. I think that by incorporating FG in a non processed diet, it becomes a healthy.

What is eliminated from the FG Diet.

  • Artificial colors and dyes
  • Artificial preservatives
  • Artificial sweeteners
  • Artificial flavors
  • Salicylates are avoided and reintroduced after baseline.

Not everyone reaches baseline from removing the artificial and salicylates. There are times when you have to do what is considered going Beyond FG and make additional eliminations to achieve the desired baseline. For us, we had to go Beyond FG and also eliminate the following…

  • Benzoates (except those that occur in nature)
  • Corn Syrup and High Fructose Corn Syrup
  • MSG
  • Nitrates
  • Nitrites

Reine’s Eating Habits

Pick Your Battles

Not everyone will want to take the time to make everything from scratch or to read labels on everything they buy. Maybe they can not afford to buy anything organic or do not have access to fresh foods. There is nothing wrong with that. You have to pick your battles and prioritize what you consider to be important for you both you and your family. For me, our diet is a major priority. It is very important to me.

A couple of years ago, diet was barely a blip on my radar. My entire house was processed. My cleaners were all store bought. I had an entire storage bin filled with OTC medications and prescriptions for everything that a household can possibly come into contact with or need. It was not until I was in ICU for 10 days that my diet became a priority for me. Both my oldest daughters developed health issues at the same time I was in ICU. I began to research foods and the roles they play in our bodies. I began to change our diet one thing at a time. The more I saw improvements, the more I researched, the more I changed things in our home. The more I changed, the more our health improved. For us, it became a priority.

3 Bite Rule

I am sure you have all heard of the whole 1 bite rule that many parents implement. It is also referred to as the “No Thank You Bite”. For those that have not, it is basically where the child has to eat 1 bite of each thing on their plate before they are allowed to say “No Thank You” and stop eating. The 1 bite rule did not work for us with Reine at all. I watched as she put a bite of food in her mouth, chewed it up, spit it out and said No Thank You! She would be starving within an hour, demanding food again. Her food world was shrinking down to almost nothing. I realized that I could not let that happen. I decided to implement a 3 bite rule. Basically Reine has to eat at least 3 bites of everything on her plate before she can be done.  Let me tell you, Reine was not impressed with this when we first started the rule. There were meltdowns of epic proportions. Standoffs at the table. Battle of wills between us and Reine. But, I stood my ground. By having Reine eat 3 bites of everything on her plate, she filled her stomach. She usually is not hungry again within an hour, unless she is having a growth spurt. I make sure that what she is eating is nutritionally packed.

Sous Chef

I am firm believer that kids belong in the kitchen. All of my kids help prep and cook. They have since they were about 18 months old. In my opinion, the more involved with their food they are, the more they will eat what they create.

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Consistency Of Food 

I hear all the time, “My child can not stand the consistency of XYZ food.” from people. I get that one. Seriously I do. Reine has Sensory Processing Disorder (SPD). She does have issues with textures of food. She is also 5 years old. Her tastes change daily. Seriously, she can not get enough of one thing one day and can’t stand it the next. I myself, can not stand the consistency of some foods. Shredded wheat is not my friend. Avocados and oysters are putrid to me. Yet, I continue to try recipes with them in it.

My point is to keep trying the foods in various recipes and forms. You may not like something in one recipe or with a certain spice or seasoning, but love it in another recipe with a different spice or seasoning. Reine’s palate has been expanded exponentially. It did not happen overnight, but it did happen. She is now a fan of salads, mushrooms, shrimp, oysters, salmon, cod, tuna, cucumber, “flat” and “gambled” eggs, hamburgers, steak, chicken, all kinds of fruits and veggies. Her list truly goes on and on. Most nights she eats everything on her plate.

Gluten and Dairy

While this is not true of everyone on the spectrum, Reine does not have any kind of intolerance to gluten or dairy. I am not in denial or delusional. Yes, I have been told that and called that. Not everyone on the spectrum has issues with gluten and dairy. And yes, Reine has been tested by her GI specialist. He had to rule out dairy and gluten intolerance when she was being diagnosed with CVS. I do not believe in removing gluten, dairy, etc if there are no signs of intolerance or just because it is the newest fad going around.

Snacks

I do not buy junk foods very often. When I do actually buy them, they are gone within about 24 hours. It is a very special treat for us. I am a strong believer that if it is not in the house, you can not eat it. Finding my keys, loading 2 kids and our Service Dog In Training into my truck, just to buy a bag of chips….yea, look for that.

My kids LOVE their snacks. Especially Reine. I make sure that what they snack on is just as important as the meals they eat. We put Reine’s snacks in half pint mason jars. She is able to pick out what snacks she wants and they are in the perfect portion size for her. There is no wasting of food and the snacks are nutritious.

Some of the snacks my kids eat….

  • Fruits
  • Nuts
  • Plain Greek yogurt maple syrup (sometimes fruit)
  • Cheese
  • Hard boiled eggs
  • Popcorn
  • Veggies
  • Hummus (Reine eats it with a spoon!)
  • Whole milk
  • Oatmeal
  • Dried fruits
  • Oatmeal bars
  • Cottage Cheese
  • Veggie muffins
  • Egg muffins

Vitamins and Supplements
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Reine does not take any vitamins or supplements. Actually no one in my home does. Reine gets tested regularly for vitamin and mineral deficiencies by her doctors and specialists. She was lucky enough to inherit my Compound MTHFR.  Because the body has a hard time absorbing Vit B and Folate, supplements are usually prescribed. Reine’s level for both the Vit B and Folate were perfect without supplementation.

At Reine’s last visit with her Developmental Pediatrician, she was reviewing test results from recent blood work ordered by Reine’s other specialists and doctors. She was in awe of the results. She kept asking me if Reine was on supplements or vitamins. When I told her no, she asked when we stopped taking them. I told her we never took them in the first place. Next she asked if Reine was taking supplements while being tested. I once again told her that we do not take supplements or vitamins. She was amazed with the results of the tests. She once again commented on the diet that Reine eats.

Probiotics  

Reine does not take commercial probiotics. Just like with vitamins and supplements, no one in my family touches them. We eat fermented foods, dark chocolate, plain Greek yogurt, and other all natural probiotics on a daily basis to help our guts stay healthy. If we have to take an antibiotic, we double or triple the amount of all natural probiotics to help restore the bacterial balance in our guts.

Cleaning and Chemicals 

In addition to the diet, we also stopped using commercial cleaners, scented candles, plug ins, Fe-breeze type sprays in our home. Using vinegar, water, and essential oils to clean almost everything with instead. What we can not get clean with the vinegar solution, we use baking soda, peroxide, and citrus to do the job. Our laundry detergent is also homemade.

I love smelly good stuff like candles. When I gave up the fake scented stuff, I began to diffuse essential oils in a diffuser instead. We have diffusers all over our home. We just trade up the scents to what ever we want. I no longer use wicked candles at this time. I use battery powered candles. Reine and lit candles scare me.
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Even my “perfume”, body scrubs, lotions, and deodorant are all natural.

ROAR FOR AUTISM

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I received an email about a month ago for something that I knew I HAD to be a part of. What I was not expecting was the solidarity of my family towards my decision. It has now turned into a family event complete with a team name….

SIMPLY REINE

Simply Reine will be taking part in Kennedy Krieger Institute’s 11th annual ROAR FOR AUTISM 5K Run / Fun Walk on April 26, 2015.  Registration fees, sponsorships and donations will support autism research and treatment programs at Kennedy Krieger Institute. We chose to do the Fun Walk so that Reine could actually take part in the event and not watch from the side lines.

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In case you did not know, Kennedy Krieger is where we go to for Reine’s diagnoses and treatments. You can not research autism without finding at least one study or reference made by Kennedy Krieger or about Kennedy Krieger.  They are in my opinion, they are one of the leading institutes in autism research and treatment.

They have given me guidance and recommendations for things that have helped me to begin to navigate into Reine’s world and to help her navigate into ours. I am not sure where my family would be without them. The difference I have seen in Reine in the last couple of months has been UNREAL. She is more at peace with herself and with us. Her stress and frustration levels are significantly lower than they were pre diagnosis.  Don’t get me wrong, we still have our days where we feel like we are hitting our heads against a brick wall, but that is to be expected. There is a learning curve / process we are learning. But we are finally starting to understand her and her needs. I can take her into stores and places with crowds now. It is AMAZING to watch her take it all in and know that she is no longer so overstimulated that she feels the desperate need to escape. We get to watch her truly enjoy herself and take part in the world around her. I am learning her needs and what we have do to help her to navigate into our world. None of this would be happening or even possible without Kennedy Krieger Institute and their AMAZING staff.

There will be VERY few times, if ever, I will ever ask you for anything. This is one of those times. Simply Reine has set a goal of $1000 to donate to ROAR FOR AUTISM. If we reach our goal, we will set another one and do our best to achieve it.

We need your help and support.

WE CAN NOT DO THIS WITHOUT YOU.

If you want to sponsor us, donate on our behalf, support us and cheer us on, I would be forever grateful. If you are going to be in the Baltimore area and want to join Simply Reine as we do the 5K Run / Fun Walk to support ROAR FOR AUTISM we would LOVE to have you on our team.

Click the following links if you want more information….

Kennedy Krieger

ROAR FOR AUTISM

Simply Reine