Renew

IMG_0621A few weeks ago I attended a full moon sound bath meditation with a friend, on the last full moon of 2019. We were asked towards the end of the session to think of a word that we wanted to reflect and meditate on for 2020, a word that we would carry into the year and focus on in the coming days and months ahead. I chose RENEW. I don’t know how or why that word came to me in that moment, but it felt right.

So instead of a New Year’s resolution for 2020, I am choosing a word: RENEW/RENWAL.

Renew means: to make new: restore to freshness, vigor or perfection; to make new spiritually: regenerate; to restore to existence: revive; to make extensive changes in: rebuild.

2019 was a rollercoaster of year. I started a new job (30 hours a week) mid-January. A month into that job Chase, Jr. got very ill. What started as strep and flu turned into two hospital visits and two months of agonizing and desperate searching for answers as to what was going on with his poor little immune system. I finally called on a dear friend, mentor and angel who helped us figure it out and get Chase back on track.

*Long story short, what I believe happened, the stem cells he had done in November 2018 kick-started his immune system from a state of auto-immune (suppressing any viruses or illnesses for years) into a functioning ready-to-fight immune system. All the things that had been suppressed were finally coming to surface and being dealt with by his body and it was taking a toll. He missed seven weeks of school, lost twelve pounds (that he didn’t have to lose) and basically lived on our couch for two months barely able to move, eat or drink. We ended up treating him for Epstein-Barr Virus (EBV) with a homeopathic protocol, from April to September, and within a week of starting he finally turned a major corner and we could see the light at the end of the tunnel. A month or two after Chase was on the mend my dad got a diagnosis of prostate cancer. While his number and prognosis were good, all things considered, it’s still not something anyone wants to hear or go through. It was a scary time all around.

God carried us through the valley though, with the help of amazing family and friends who stepped in to help so I could work, with meals, carpool, support and most importantly prayers!

We took a family trip to New York in July (the hottest weekend of the entire summer there), saw all the things and took the boys to a Yankees game, the highlight of the trip! My husband and I were so grateful and amazed at how well both boys did on that trip, but especially Chase. We walked MILES in the city, road in Ubers, navigated hot steamy subways and fought crowds all over the place. Chase went with the flow, took in all the sights, sounds and disgusting smells of the city and never seemed phased. It was not beyond us that this was not a reality we ever imaged a few short years ago. There was a time I never dreamed of flying on a plane to go anywhere, much less New York City!

Because of all the days missed from school in the spring, along with a number of other factors, we decided to hold Chase back and repeat 3rd grade this school year. School started off great! No drama, wonderful teachers and aids, amazing friends…and then the sickness started again around October and early November. It hasn’t been to the extent it was earlier this year, but a new crop of issues have risen that we are diligently searching for answers for and praying for guidance in treatment.

Where panic and desperation guided us last time, prayer and peace, that God will get us through this as well, are leading us this time around. While it’s never easy or fun to see your child suffer and regress, I know God has a healing hand in this journey with Chase and all of this is happening for a bigger purpose and reason.

So, all of this recap to say… the word RENEW just felt right for 2020. My focus and hope for this coming year is for renewed health, renewed spirituality, renewed relationships and renewed HOPE in Christ.

A few days ago, as I was thinking about my word for 2020 I decided to look up Bible verses that referenced the word renew/renewal. These two verses were the first to jump out at me and seemed so fitting and perfect…

“Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.” Romans 12:2

“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” Isaiah 40:31

This morning, as I was scrolling through Instagram looking at everyone’s New Year’s Eve pictures, resolutions, etc. I came across this photo, posted by our church, and was BLOWN AWAY! If this isn’t a sign from God I don’t know what is!?! ūüôā

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May 2020 bring you all peace, love, hope and RENEWAL as well!

 

The Burning Fiery Furnace

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Waiting… That’s where we have been for a while now. There has not been much exciting to share, as far as progress with Chase. It feels like the same old holding pattern we have been in many times before. Try some new protocol or treatment…and wait…and pray…and wait some more.

I attended a bible study earlier in the week where the leader spoke on Daniel 3. The story of King Nebuchadnezzar, his golden statue and his demand that everyone bow down and worship it. Shadrach, Meshach and Abednego; however, refused to bow down and serve a false god so they were bound and cast into a “burning fiery furnace” and King Nebuchadnezzar questioned if “their god” would save them.

It’s easy, in a season of waiting, to question God’s intentions. To wonder if He hears our prayers. To get frustrated and even angry at God for allowing pain and suffering, especially to innocent children. And especially when we don’t see the results or outcomes that WE want or expect to see. It feels like WE are being cast into the burning fiery furnace – where our faith is tested.

But in the story of Shadrach, Meshach and Abednego they had faith in their God, even though they could not be certain that he would deliver them from the flames. They answered with this:
“17¬†If this be so,¬†our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king.¬†18¬†But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up.‚ÄĚ Daniel 3:17-18

I was reminded that even if God does not answer our prayers exactly when or how we want them to be answered, we are still called to be faithful that He will deliver us from our pain and suffering in the end. He sent Jesus to bear the most unthinkable pain and suffering so that whatever we endure on this earth is only temporary. Having faith means that we submit fully to the Lord, even in the midst of the flames. Sometimes, it’s the trying times, inside the fire, that show us how strong our faith really is.

 

Panama Update

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Panama – a goal and a dream (for Chase) that’s been on our hearts and minds for several years now – is FINALLY happening!

I first learned about Panama, and stem cell infusions, several years ago through “Autism-recovery groups” on Facebook. As with everything else, I researched it (A LOT).¬† Everything about it and how it works, which I vaguely understand, still made complete sense. I immediately felt a strong “pull” towards doing this for Chase, but the hefty price tag for the treatment felt daunting and out of the question at that time. Our prayers were filled with pleas for clarity and ways for this option to happen if it was God’s will for Chase. But the timing wasn’t quite right.

Fast forward to last spring of 2017… At that point we had tried a LOT of different protocols and therapies for Chase, and felt like it was time to give Panama a try. I applied early April and we were quickly accepted to go. BUT, around that same time I started having severe neurological issues, brain fog, sharp shooting headaches up my spine and neck (to the point where I wondered if I had a tumor), joint pain, extreme fatigue and many more weird symptoms. We had learned the summer before that Chase was Lyme positive (a somewhat common co-morbid occurence in children with ASD), but we had not yet addressed that issue. Because of this knowledge and the symptoms I was experiencing I had my doctor run basic Lyme labs, which are notoriously false negative, but mine came back extremely positive. I had Lyme and had passed it on to Chase…it all made sense.

Panama got put on hold.

I had read and been told, that for stem cells to be the most affective, it was best to get as many inflammatory issues as you could under control before you had the treatment. It felt like God’s way of saying “not yet.”

So, instead of Panama, we were led to a doctor in Philadelphia who specializes in chronic Lyme Disease. Chase and I both saw and consulted with this doctor from May 2017 until June 2018. The story of that year of treatment is a blog of its own. But, by this summer I finally felt like we were at a place where it was time to revisit Panama/stem cells.

I applied again. Filled out the application quickly, and a little too honestly (including disclosing “Other diagnosis’/disorders” – LYME) (insert eye roll)! I got an email back stating the normal stipulations for approval (proof of diagnosis of Autism and heavy metal test) BUT they also needed labs or a letter from Chase’s doctor showing he had no active Lyme infections.

I honestly wasn’t sure if he was negative for infections or not. I panicked! Was this ANOTHER road block on this journey to Panama? More prayers!

We did the necessary labs and then waited and prayed. Several weeks went by, waiting on the lab results, and it was torture! But, they all came back negative – Praise the Lord! So I sent them in to Panama and heard back the next day that we were IN!!! Praise the Lord again!

Up until this point, we hadn’t really crossed the bridge about how to pay for this expensive treatment, we just knew we had to try and if it is meant to be it will be! We honestly feel like if God has led us to this specific treatment or path that He will provide a way to make it happen. We are still figuring out this piece to the puzzle, but in the mean time we truly appreciate all the prayers and support that have gotten us to this point!

We are so excited about this opportunity for Chase and continue to pray for hope and healing for him!

To read more about how stem cells work for Autism click here.

Maggie Herndon Art

 

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Our journey and passion for finding healing and recovery for Chase (and myself) has merged with my passion for painting and writing. I knew when I quit my job earlier this year that writing and painting were both passions I wanted to explore further, but also wanted to have a purpose for doing both. Helping people by sharing our journey has always been one of the main reasons for my writing. When I started painting again, though, I wasn’t sure what it would look like or how it would evolve. I’ve prayed for months for clarity and “purpose” with how to grow this passion for painting and yesterday it came.

BACK STORY:
For years, longer than not, Chase has been on a very clean diet (you can read more about that here). That was the first step we took when we learned about all of the underlying inflammation contributing to his Autism symptoms. Since then, we have done A LOT of testing, treatments, protocols (most not covered by insurance) to address underlying issues: inflammation, auto-immune, Lyme, heavy metal toxicity and more. A couple of years ago we began researching stem cell therapy when Duke was enrolling children for an ongoing study using umbilical cord blood stem cells for Autism treatment. We applied, along with most all of our local friends who had a child with Autism as well, but we didn’t get in (due to the fact that Chase is non-verbal) and were devastated. We soon realized it wasn’t in God’s plan for Chase at that time though.

Last spring I started learning about another option for stem cell therapy in Panama (The Stem Cell Institute) that treats Autism, among many other things, with umbilical cord stem cells. We applied, got accepted and were seriously considering going, but around that time I began to have symptoms of Lyme. We knew Chase had chronic Lyme disease, so I got tested and it came back showing I was positive for previous and current Lyme and co-infections as well. We put Panama on the back burner, knowing that these issues needed to be addressed first and started researching Lyme doctors instead. I found a LLMD (Lyme Literate Medical Doctor) in Philadelphia and Chase and I both have been seeing him for almost a year now.

When we began treating the Lyme I knew it would be a long journey and not a quick fix treatment, but I committed to a year with this doctor/protocol before exploring other options and that year is coming to an end soon.

WHERE WE ARE NOW:
Over the last several weeks going to Panama has been pulling at my heart strings once again. My gut is telling me that the timing is right now, and God has shown me countless times, through conversations and coincidences, that we should give it a shot. This is where the “purpose” for my paintings come into play…

The cost for each treatment and trip to Panama (which will likely need to be 3-4 trips every 8-12 months) are close to $20,000 (not covered by insurance at all), money we don’t just have available to go. In discussing our options, I had the idea to use the sale of my paintings as a way to raise money towards a trip (hopefully early this summer) for Chase to receive the stem cell therapy.

I have created an Instagram and Facebook account – Maggie Herndon Art (@maggieherndonart) that I will be sharing both custom pieces and art work for sale – for a cause! All purchases will go towards getting Chase to Panama, as many times as God allows. So please know that the paintings you are receiving are going to a greater cause, very near and dear to our hearts!

If you are interested in any custom art work please email me at maggieherndonart@gmail.com or DM (direct message) me through Instagram or Facebook.

*Disclaimer: Stem cell therapy can be a controversial topic; however, The Stem Cell Institute strictly uses donated umbilical cords that have undergone extensive testing and screening.

 

More On Diet…

FOOD REACTIONS
Many people get confused by food allergies vs. food sensitivities and intolerances. An allergic reaction is just one type of reaction to food (or medications, environmental factors, pets, etc.), but there are many different types of reactions due to sensitivities and intolerances as well.

Traditional food allergies create antibodies in the body called immunoglobulin E antibodies (IgE antibodies), but food sensitivities result in IgG antibodies – testing for these two antibodies is different and often confusing. IgE symptoms (“allergic reactions”) are typically quick onset and obvious – hives, rashes, wheezing, sneezing, or more serious anaphylactic-type reactions. IgG (food sensitivity) reactions can be similar to allergies, but may also include behavioral or developmental symptoms, and these reactions are typically slower in their onset – sometimes up to three days after eating a certain food – making them harder to pinpoint.

Food intolerances are not immunoglobulin reactions, though. Food intolerances are issues with digestion of certain foods due to the lack of specific enzymes in the gut, most commonly affecting digestion of proteins from gluten, casein and soy. Celiac gluten intolerance; however, is an auto-immunue response from gluten exposure that damages the intestinal tract.

Intolerances may also include the inability to metabolize a certain component of a food such as phenols and salicylates. For example, lactose intolerances may cause immediate cramping and diarrhea; and gluten/celiac type reactions may be sudden (stomach pain, cramps, diarrhea) or long term reactions like neurological symptoms, fatigue, skin conditions, etc. With phenols and salicylates some reactions could be quick (red ears or face, hives, headaches, hyperactivity) or delayed (dark circles under the eyes, sleep issues, head banging, tics or repetitive movements, just to name a few).

For a more in depth list of food reactions and behaviors view this symptom checklist.

CAUSES OF FOOD REACTIONS

When food begins to digest in the small intestine it breaks down into its smaller components (proteins–>amino acids, fats–>fatty acids, carbohydrates–>simple sugars). Along with nutrients, these smaller components cross the intestinal lining (gut wall) into the blood stream where they travel throughout the body, and even into the brain. This is where the blood/brain barrier and “gut” come into play. The intestinal lining provides a barrier to block foods from entering the blood until they are fully digested and broken down. It’s like a sand sifter, only letting the smallest proteins through once they are broken down, keeping the larger/undigested proteins out. BUT when the gut or intestinal lining is damaged or “leaky,” larger, potentially harmful, food molecules can get through and enter the blood stream.

Many people with Autism, ADHD or auto-immune issues have “leaky gut.” There may not be enough digestive enzymes in the body to break down the food adequately or it may not be released when needed during digestion. Digestive enzymes act to break down protein amino acid chains into individual amino acids. The amino acids are absorbed through the intestinal lining into the body and then reform into peptides and proteins again to be used throughout the body. If the amino acid chains are not completely digested or broken down these peptides can leak through the gut causing the body to recognize them as foreign invaders so to speak.

I’ve heard it described as this…amino acids are like Scrabble letters and peptides are like the words made up of those letters. Depending on how you arrange the amino acids (letters) different peptides (words) are formed. But if the letters don’t form a real word, the body considers it foreign. Once through the gut, these “words” can send signals to the brain that are abnormal and this is where some of the symptoms of Autism and ADHD show up.

OPIATE EFFECT

When certain peptides (words) get through the gut, and are arranged in a certain way, they can look like opiates and act on the brain in a similar way. Casein and gluten are the most common foods that cause opiate-like reactions on the brains of people with leaky gut. Gluten and casein contain sequences of amino acids, within their own chains, that resemble opiate-like peptides. When gluten and casein are not properly broken down (due to digestive enzyme deficiencies), specific amino acid sequences called gliadorphin and casomorphon can leak through the intestinal lining and go to the brain causing the opiate-like effects.

These opiate-like peptides mimic the effects of opioid drugs on the brain and can cause brain fog, giggling fits, night waking, high pain thresholds and many other symptoms.

*For us, reading this one bit of information triggered the lights to go on! Chase used to wake in the middle of the night uncontrollably laughing, almost as if he were drunk or high. The madder we would get at him, the more he would laugh. It was infuriating and frustrating! He was completely zoned out, didn’t respond to his name hardly at all, and he never seemed to cry in pain whenever he hurt himself. It was as if he didn’t have feeling or pain receptors anywhere. Reading these effects of gluten and dairy were the thing that made us reconsider a GFCFSF diet again. And with time, after removing gluten, casein and soy, all these things went away!

TESTING

Like I said before, testing for food allergies vs. food sensitivities/intolerances can be tricky. Traditional allergists will test for true food allergies (IgE), with skin or blood testing, looking for immediate and fast-acting immune responses. However, this type of testing is not adequate when testing for IgG sensitivities and reactions related to leaky gut. In our experience, most allergists are not familiar with IgG testing; therefore making it more difficult to do. Most IgG testing is done through blood tests, not often covered by insurance, and typically through integrative or naturopathic practitioners.

For more information on food sensitivities/intolerances and phenols/salicylates click here.

 

Diet

IMG_4860The diet that started this journey of healing…

Shortly after Chase’s diagnosis, in early 2013, someone recommended to us that we start him on a gluten-free/casein-free (GFCF) diet and that it would help with some of the “symptoms” of Autism: meltdowns, rigidity, repetitive movements, vocalizations, anxiety, etc.

At that point we were willing to try just about anything to help him so we gave it a shot. Five years ago, living in a small town, it was not easy to find many GFCF options to eat. All we had was Kroger and Wal-Mart. The gluten-free health craze hadn’t taken off, like it has today, so we were stuck trying to make things he was already eating (which was limited at the time anyway) into GFCF copies with limited resources to pull from. We were overwhelmed with the diagnosis, overwhelmed with a newborn (Miles), overwhelmed at all the new therapies and overwhelmed trying to find things he would eat, which wasn’t much. So after only a few short weeks, maybe 2 months at most, we gave up and decided the diet wasn’t going to work for him.

Fast forward to May 2014 when God intervened. We were on a family vacation in Watercolor, FL and a mom around my age approached me on the beach and asked if I had a son with Autism. She said her husband had overheard someone on the beach, with two young boys, talking about how their older son had Autism, etc. I didn’t think I had been talking about Chase and his Autism with anyone, but I told her yes, in fact, I do have a son with Autism; and she proceeded to confide in me how their son had just been evaluated for Autism as well. Turns out there was actually another family with 2 boys, who’s older son had Autism as well, but she found me first, and I’m so glad she did!

We sat down to talk for a while and she showed me a book she was reading called “The Kid-Friendly ADHD & Autism Cookbook: A Guide to the Gluten-Free Casein-Free Diet.” She said they had recently started implementing the diet and were already seeing some great things. It immediately sparked my interest, but I was still skeptical. When we got home from the beach I started to read the book though, and half way through the introduction the lightbulbs started going off. It all started to make sense…

This diet WOULD help Chase, we just needed to stick with it longer, be more diligent, and go for it one hundred percent! That’s the thing when you cut gluten and casein – it has to be one hundred percent out of the diet to see results! It can take casein proteins several weeks to get out of your system, and gluten proteins even longer, sometimes a couple of months. There’s no half way when it comes to a GFCF diet. The slightest bit of either can set you back to square one. This was the most important thing we learned early on.

So we dove in again to a GFCF diet and this time, after a few short months, we started to notice the changes. Chase started to calm down. The repetitive movements decreased. The tantrums, rigidity and aggressiveness almost faded completely. No more explosive yelling and fits from the backseat when I drove a different route to school. No more pacing back and forth in our living room, jumping up and down, climbing on all the furniture in the house. The sensory seeking behaviors decreased significantly. Eye contact returned. Chase started responding to his name. The presence in is his eyes returned. It was like the fog was lifting and he was coming back to us, back to our world.

The next piece to the puzzle that I came across was Dr. Katie Reid’s TEDx talk¬†on the role of glutamate in healing. That girl I met at the beach, Andi, turned out to be one of my very best friends. She introduced me to Dr. Reid, the role of glutamate in healing and has recently started her own blog¬†as well. She has also partnered with Dr. Reid on writing a cookbook full of wonderful and delicious “clean” recipes that will be coming out soon.

The idea of “clean” eating, reducing glutamate exposure, balancing GABA/glutamate, the gut micro-biome, eating organic/non-GMO as much as possible, the role of glyphosate (RoundUp) on our health became an obsession. The more I learned about our food, the more I learned how BAD our food actually is, especially the processed foods. My eyes were opened to the truth of our food and drug industry and the saying “once you learn, you can’t unlearn” is so true. Now that my eyes have been opened I can’t ever go back. Now that I have SEEN how food can make us sick; and the benefits of fresh, organic, healthy food in healing; it will always be our first line of defense and first course of action when it comes to our health!

Not only are gluten and casein important to remove from your diet, but there are other highly inflammatory foods that are just as important to remove as well, corn and soy being the other major sources of inflammation for many. Most people take these out of their diets shortly after gluten and casein, which can be hard if eating processed foods because corn (and rice and other grains) are common gluten-free ingredients in breads, crackers, cereals, etc. But corn and soy can, and usually are, just as inflammatory (also highly processed with chemicals and GMOs) causing them to wreak just as much havoc on a sensitive body as gluten and casein.

In May 2016, just 2 years after starting Chase on his journey to health and healing, and after dealing with a myriad of my own issues and symptoms, I was diagnosed with Hashimoto’s (autoimmune thyroiditis). I was blessed to find an amazing natural-minded practitioner Dani Williamson¬†here in Nashville and she immediately put me on a GFCF diet as well. Again, my eyes were opened to how important diet and quality of food are in the role of promoting healing in all of our bodies, and reducing overall inflammation for a myriad of health problems…not just Autism.

For more on GFCFSF diet click here. While many people argue that there is not enough research and evidence to back diet and Autism, we have seen and experienced enough change to validate it’s effectiveness, but for additional research links, information and resources visit TACA.

To dive even deeper into diet and for more info on Glutamate click here.

 

 

 

 

Somewhere In Between

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New school years always bring about a slew of emotions and this year was no different.

Miles started Kindergarten and could not have been more excited! This is the first time both boys have ever been at the same school and on the same schedule. It’s pretty exciting for us all, I won’t lie.

While sending my baby to Kindergarten was bittersweet in itself, so was sending Chase to Second Grade. Every year with Chase brings expectations, ideas and dreams that are a little different from most typical kids. The sadness and sting of the “differences” doesn’t hurt as much as it used to, but it’s still there, like a dull aching hangnail that won’t quite heal.

My first Kindergarten experience, with Chase, was completely different than it has been, so far, this year. With him, all I could focus on was IEPs, paras/aids, schedules, food, communication, collaboration, therapies…definitely not the “typical” Kindergarten concerns. As much as I hate to admit this, I couldn’t, or didn’t, have time to worry about volunteering, signing up for class parties and field trips, or which friends were going to be in his class.

Going into this year, with Miles, I knew I needed to step up my game though. He’s a social kid, loves his friends, is eager to learn and wants to be involved in it all. I feel like I’m walking through this experience as a “first-time Kindergarten mom” all over again, on a different playing field.

Walking up to check the class rosters the week before school felt like foreign territory. Excitement over who was in which class felt like a new experience, mostly because I know a lot more of the parents (and their kids) than I did when Chase started Kindergarten, but also because I know Miles cares a lot more than Chase did when it was his turn two years ago.

It’s a weird feeling and hard to put into words, but I feel stuck somewhere between the “neuro-typical” world and the world of Autism and IEPs.

I am thankful, though, that I get to experience both, because I feel as if it gives me a broader view and a deeper sense of gratitude for the things that are most important in school and in life, in general.

While there are always hard times with Chase, ups and downs, roller coasters of emotions; I am thankful for how far he has come and what a large role his school has played in that growth! I’m also thankful for the friends he has made; especially the ones who look out for him, help him in his classrooms, make the effort to sit with him at lunch and play with him on the playground. He has come so far from that first week of Kindergarten, two years ago.

This year, checking that class roster for Chase felt like a new experience as well! For the first time, maybe ever, I knew he would be excited to have certain friends in his class – familiar faces. And teachers who genuinely care about him! I’m excited to see what this school year holds, for both boys, and the all the ways they will learn and grow.

I continue to go back to this verse, in every season of life, as a reminder of who is ultimately in control and guiding our lives. When I find myself worrying or stressing about the future I find comfort in these words…

“I am leading you, step by step, through your life. Hold My hand in trusting dependence, letting me guid you through this day. Your future looks uncertain and feels flimsy – even precarious. That is how it should be. Secret things belong to the Lord, and future things are secret things. When you try to figure out the future, you are grasping at things that are Mine. This, like all forms of worry, is an act of rebellion: doubting My promises to care for you.

Whenever you find yourself worrying about the future, repent and return to Me. I will show you the next step forward, and the one after that, and the one after that. Relax and enjoy the journey in My presence, trusting Me to open up the way before you as you go.”
~ Jesus Calling (Deuteronomy 29:29, Psalm 32:8)



Triumph & Joy

IMG_4587“If you’re seeking a life without failure, or adversity, or suffering, you are seeking a life without triumph or joy.” – Steve Gleason

It’s been a wild few months. I’ve had lots of blogs brewing in my head, but life keeps getting in the way, sleep continues to evade us, and at the end of the day there’s little energy left to write. So, these are my rambling thoughts for where life has taken us lately…

May 2016, I went to AutismOne; a conference where some of the top medical doctors and naturopaths in the field of Autism gather to discuss recent research, cutting edge treatments, causes, solutions and products/supplements/therapies to help kids with Autism recover. Because kids with Autism DO RECOVER. It’s what we keep fighting for.¬†I’ve spent countless hours a day and many sleepless nights, laying in bed, reading, researching, searching, more searching…for answers, for treatments, for RECOVERY.

I pray constantly for God to guide us, show us His plan and which path to take. And He almost always does, yet not always on our timeline. We have tried a lot. We have failed a lot. Lots of things haven’t worked for Chase. It’s always a roller coaster. One step forward, two steps back. Some things have made him worse, but some things have worked and have made him better. It’s those glimpses of things getting better that give us hope and keep us fighting. And it’s the triumph and the joy that we keep fighting for!

At AutismOne I heard Dr. Richard Frye speak during one of the sessions. He is a highly regarded Child Neurologist and Director of Autism Research at Arkansas Children’s Hospital in Little Rock. He is a national leader in Autism research and has authored numerous publications and research studies. After hearing him speak that weekend I came home and called his office to book an appointment. I also met a mom that weekend that convinced me his assessments and opinons were worth the wait to get in for. It felt like a sign from God. That was the end of May, 2016. The first available appointment was March 21, 2017.

While we waited for Dr. Frye, over the summer we did a sleep deprived EEG, and again in the fall we did an overnight EEG, to determine if there was any seizure activity in Chase’s little brain. Also, due to the fact that he is still non-verbal, I felt like an MRI was needed to make sure nothing major was going on we weren’t aware of. I wanted to gather as much information as I could before we saw Dr. Frye.

His EEGs came back showing some “abnormal focal discharges” in several areas of the brain, but his neurologist at Vanderbilt did not feel like they were significant, and because he wasn’t having “clinical seizures” there was not much else recommended as far as a treatment plan. More research…

We continued over the summer, and still today, with classical homeopathy. We have seen some great progress with this, albeit slow, but feel like this is a safe and affective method of healing and detox for Chase.¬†We also know, based on labs, that Chase has Lyme, co-infections, viral infections, high toxic metal levels (aluminum, barium, lead, mercury and nickel); he has two different MTHFR mutations which affect the body’s methylation process (i.e. ability to detox); and has high levels of yeast/candida and clostridia. But¬†despite all of this, Chase has continued to grow and make progress. Some days are daunting, but we keep pushing forward and looking for answers. There is always HOPE!

Around October 2016 I had been researching MNRI therapy (a form of primitive reflex integration therapy, in a nutshell) and I stumbled across a chiropractor/functional neurologist here in Nashville. There are not currently any trained MNRI therapists in the Nashville area so I started reading through her website and everything on it just made sense. This form of functional neurological rehabilitation is specifically designed to target the affected areas of the brain which are at the root cause of developmental disorders such as Autism, ADHD, learning disabilities, dyslexia, etc. It seemed very similar to the MNRI therapy I had been researching so I felt like it was a good place to start.

We began seeing Dr. Melissa in November 2016 and she began doing “brain exercises” with Chase.¬†Fast forward to a couple of weeks ago and Chase finally started trying to mimic¬†us making sounds. This has always been the biggest struggle in speech therapy in all the years we had been doing it! He lost his ability to mimic any mouth movements or sounds around 15-18 months old, and until a couple of weeks ago has never even attempted it. To say I was thrilled is an understatement. It felt like a HUGE GOD WINK, right when we needed it most. And the look of pure joy and triumph on Chase’s face when he made those sounds completely melted my heart!

Our appointment with Dr. Frye got moved to the beginning of March so we finally checked that off the list. It was a long 2 days of travel, but Chase was a champ. After going through his file and medical history, Dr. Frye felt like Chase’s EEGs and MRI were significant enough to try out an AED (anti-epileptic drug). He sent us home with a prescription for Vimpat, as well as more lab work to test for mitochondrial dysfunction and various other things.

Tonight, after a long week of praying for peace in this decision, trying to put all trust in God that this is the best thing to try for Chase, we started the AED. It may or may not work. Of course we always pray it will help, but that’s not always the case. If it doesn’t, I know God has, and will continue to have, big plans for Chase. I know He will continue to lead us on this journey.¬†Regardless, we will continue to search, continue to try whatever God leads us to try, and we will never give up hope that Chase WILL RECOVER!

I know this is a long post/update, but I wanted to give the background first before sharing that this coming weekend we will be joining our church and baptizing both the boys.¬†It has been a journey to get to this point. We feel blessed to have found Christ Presbyterian Church after struggling to figure out where we fit in and which church meets not only our needs, but both the boys’ uniquely different needs as well. It’s been a struggle in the past to feel like we could leave Chase and actually enjoy a service without worrying how he was doing. But CPC has truly been a blessing. The special needs ministry there provides buddies on Sunday mornings to sit with kids in their classes while parents have the opportunity to worship without worry.¬†We have been wanting to join for a while, but logistically couldn’t do the class until now. More importantly though, we feel called to baptize the boys as a way to honor God and commit to raising them in His image, and to give Him the glory!¬†Through the failures, adversity and suffering, we hope and strive to glorify God in the triumphs and the joys of this!

‚ÄúFor I know the plans I have for you,‚ÄĚ declares the Lord, ‚Äúplans to prosper you and not to harm you, plans to give you hope and a future.‚ÄĚ ~Jeremiah 29:11

**Originally written 3/6/17

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Community

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I’ve always had a wide variety of friends. From the time I was in high school I seemed to float between groups during different seasons of life. I had a handful of really close friends that were a constant, but overall I tried to be friends with all different groups of people. I’m not really sure why or what that means about my personality, but I think deep down I was always seeking positive relationships, energy, emotions and support.

Over the years, especially when I became an adult and a mother, I began to realize the importance of friendships, community and the impact they have on my life, now, as a role model for my children. I began to understand how relationships can influence your attitudes, thoughts, emotions and decisions; and I began to see how important positive peers, friendships and associations are when it comes to your walk with Christ and daily lives.

I have been blessed with a lot of amazing friends from all walks of life, each bringing different and unique perspectives, love and support to our family. I have old friends, who I’ve known for years, who I know would be here in an instant if I called. I have an amazing group of special needs moms who “get it” and can always relate to the struggles and victories we face on a day to day basis. I have amazing neighbors, church and school friends who love and pray for our family, pick up the slack on the hard days and help out all the time. A lot of these friends overlap groups, but the common denominator between all of them is that they are a community of love and support for me and our family.

I hope and pray that I am the same for those friends. I have come to realize how important community really is when it comes to faith and healing as well. We couldn’t “do life” without these friends. And I truly believe that surrounding yourself with positive, uplifting and Christ-like friends only strengthens your own walk with Christ and deepens your faith, promoting overall health and healing both in body and spirit.

There have been hard and dark times, when I felt alone, isolated and hopeless. I felt like no one understood what I was going through or how hard life was at that time. But looking back on those times, I see how I had isolated myself and withdrawn from the community and support around me. I know now how important that community is and how opening up and sharing my vulnerabilities and struggles only helps to heal them.

“And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another‚ÄĒ and all the more as you see the Day approaching.” Hebrews 10:24-25

To Miles’ Teachers

**Originally written 8/31/16

Today was the start of another school year for my younger son Miles. For the last two years, as my older son Chase has begun his school year, I’ve written his teachers, therapists, and aids letters – roadmaps if you will – discussing all his “special needs” associated with his Autism diagnosis. This year, today specifically, I feel the need to write a letter to Miles’s teacher – a road map to his personality and struggles.

Chase’s letters/notes are easy to write. Obvious. He is non-verbal, so there are lots of things to explain regarding his iPad, behaviors, non-verbal cues, wants, needs, strengths, weaknesses, etc. With Miles it’s not so black and white. So to Miles’s teacher…

Today was the start to another year. You may have noticed the apprehension and nervousness in Miles’s demeanor when you came for your home visit yesterday, to welcome him to his new class; and even this morning when entering your classroom. While he seems so social and outgoing on the outside, Miles internalizes and worries about so many things.

He spent the summer going to super hero and soccer camps, never missing a beat, and always asking/begging to know when it would be time to go back to school. He LOVES school! And he loves to learn, to socialize, and to have something that’s his own.

You will quickly see that he has a huge heart. He is a natural leader. And he is very empathetic, always looking out for others and willing to include everyone. But today, I noticed another side of Miles…fear/nervousness/apprehension about going to school, starting something new and unknown.

He’s always been my go-getter, strong-willed and stubborn, yet sensitive and loving. As he’s gotten older and begun to understand more, I am noticing him picking up on EVERYTHING and taking on roles no four year old should have to take on. I cringe at the thought of all the doctors visits he’s been dragged to – from neurologists to homeopaths – and the therapies has to wait patiently outside of for hours at a time, but that goes with the territory of having a special needs sibling.

While it hurts my heart to write this, Miles looks to school to fill a void of friendship, attention, and play that he is not getting at home. As much as I would LOVE to see my two sons running, playing and laughing together, that’s not the reality of life at home. As hard as it seems day to day, I know these experiences are shaping Miles to be a special soul himself. He¬†intrinsically knows why Chase won’t play with him, why he can’t talk, and why their relationship is “different.” But I know it still hurts him deep down.

Miles is Chase’s biggest fan. From the time he was born he has looked up to Chase and wanted nothing more than to have his attention. Because of the Autism, Miles doesn’t get it very often. But he never gives up trying. He is protective of Chase, always looking out for him, making sure he’s OK, and “showing him off” to all his friends. The pride he exudes when Chase does something new or great warms and breaks my heart at the same time.

Miles knows pain, he knows stress, he knows worry, he knows heartache, and victory, but most importantly he knows unconditional love. So while it’s not “ideal” for him to live with certain stresses at home, I know without a doubt it will make him a better person in the end.

I do my best to nurture his spirit, encourage and build his confidence, reassure him and praise him for the wonderful person that he is, but at the end of the day I am just doing the best I can with two children who have extremely different wants and needs. I pray constantly for guidance and patience. I know God has special plans for his special little soul.

I don’t have specific instructions or advice to go with Miles, I write this simply so you will know where he comes from, why he is the way he is, and help him to grow in confidence this school year.

Thank you for investing in our children. Nurturing their curious minds and spirits. And helping to shape them to be better kids with each day!