The Beginning of the Journey
Jen & Christian Today!
Autism is a term used frequently in our current society yet it is rarely understood. People whose lives have been touched by it seek answers and often must take a journey alone to find help for their children. This is the beginning of a series about Autism – It is the story of Jennifer and Christian; one brave and determined Mother who has been able to tap into resources which have helped heal her son in dramatic ways. Christian’s story begins on November 9, 2000 at 5:14am, a precious new bundle of joy with endless opportunities ahead of him. When Christian was born, I counted his fingers and toes. I listened as they stated his Apgar score was 9. Christian came home a very healthy baby of 6lbs 1oz. Within weeks I was unable to breast feed and was forced to switch to formula. After a few days of being on formula, he started showing signs of having a very hard time with digestion. One hour after every feeding he would cry for a solid hour, and then he would get hungry again. This went on for weeks. I was told by his pediatrician that it was colic. He said there was nothing else that I could do for him and that he would have to grow out of it. He advised that I should try changing bottles and formula.
I went to see Dr. Carter, my chiropractor since the age of 9. When I walked in his office and he saw the pure exhaustion on my face, he was curious about Christian. While explaining to him about the colic, he was already taking him out of the carrier and was gently laying him on his lap. He then proceeded to adjust Christian and he fell asleep, in what seemed like seconds. He seemed more relaxed than I have ever seen him. His colic was corrected and from that day forward he had no problems with digestion. He was a very happy, loving child. He could spend his days with just one or two toys, and was perfectly content with his own company. He was progressing through every milestone as expected. During his first 12 months, Christian’s vocabulary was growing. Words like mamma, dada, baba, and ball became part of his every day vocabulary. He would point at airplanes in the sky and told me he loved me. He colored and played with other children.
One of my many favorite memories I have of Christian, as a baby, is that anytime he saw me on the opposite side of our glass door, I had to kneel down and kiss him through the glass. He was such a momma’s boy. He loved to be touched, held, and cuddled. I rocked him to sleep every night.
I started to find that, sometimes touching him seemed to cause him irritation. There were nights that the only way to soothe him was to put him in his vibrating bouncer chair, turn on “someone like you” by Sarah McLaughlin (I could never change the song. It was an exact recipe.) And hold the bouncer and sway it from side to side until he drifted off. I thought it was odd, but he seemed to love it and it was the only thing that worked when he was having “one of those nights” so I was happy to do it for him.
Soon, Christian started displaying some problems with his speech. He began to withdraw more and more into his own world, and eventually stopped talking completely. He started having difficulty sleeping and had chronic ear infections. Doctors placed tubes in his ears and suggested speech therapy, A cheerful therapist from Holland came to our home every morning for speech therapy. They played for about 30 minutes a morning and then we would go on to work and school. One morning, she came in and sat right down with me and started telling me that she has noticed some odd behaviors. She then mentioned the word AUTISM. Like any normal mom, I kicked her out of my house and told her she was crazy. I was in denial.
At that point more professionals started using the word Autism. So against my own desire, I took him to be evaluated. On May 12, 2003 at 2 ½ years old, Christian was diagnosed with Autism. I have a child on the spectrum!!! I didn’t know what a spectrum was and all the general public seemed to know about it was a movie called Rain Man. Little did I know I was going to spend the next 10 years and more of my life learning what autism really meant.
It meant losing jobs, relationships, friends, pushing my family away. It meant shopping in the middle of the night so I didn’t have to take him to the grocery store. It meant giving up my life so I could figure out how to live. It also meant fighting for my child, never giving up hope, and to NEVER SAY NEVER! As a single mom with a child like Christian, it was very difficult to maintain my career in healthcare and still have him to all scheduled therapies and attend all the IEP meetings.
I explored speech therapy, occupational therapy, physical therapy, social and emotional therapy, ABA services, respite care for my sanity. This was a very hard time for me accepting all these facts being thrown at me. I was told that Christian would never speak again. I was told he may never be potty trained. The worst part came when I was told that due to his estimated size later on in life that I would have to put him in a home. They advised that he would become too big and too violent for me to handle. I remember leaving that day filled with loss. Watching my baby boy in the back seat playing so innocently and yet in such a world all his own. I wanted to understand his world. I wanted to spend time in it with him. I thought if I could get in his world with him, that I could pull him out into mine. I was a mom on a mission!!! I read! Boy oh boy, did I read. I researched, I called places, spoke with a multitude of different therapists and doctors. I then went through the process of elimination.
I started with C.A.R.D. (the Center for Autism and Related Disabilities) which is an amazing supportive agency and they helped me put together a communication book to use with Christian. It was VERY helpful for us both. We also learned sign language together and I used a combination of the two to communicate with my son. Also, making a minor change to his diet made a huge impact in our lives. A friend’s dad found a study based out of Canada about the Gluten and Casein Free Diet. There was very little information on it at the time, and it hard to obtain it. His practitioner said that the study was not recognized in the states and he did not have any proof that it worked. He stated not to take him off the milk but RATHER, he might not be getting enough??? From the moment I picked Christian up from day care until we got home; milk was the only thing on his mind. He was craving it. Like an addiction. Little did I know then, that is exactly what it was. I went against the advice of his medical doctor and removed all Casein. CHRISTIAN SAID HIS NAME FOR THE FIRST TIME THE VERY NEXT DAY!! He still remains mostly casein free to this day.
In 2003, just a few short months after receiving his diagnosis, I enrolled Christian into the Alachua County public School system through the ESE Department. They found a school that had a specialty class for children like Christian. I’ll never forget watching him climb those large steps onto the school bus for the first time. He seemed so small and young to have so much to deal with. I stood there and wondered as I waved goodbye to him, does he feel alone? Does he know that I am right here with him, fighting with him to get answers? As I watched him sit down in his seat on that big yellow bus, barely able to see out of the window, I blew him a kiss and said a little prayer as the bus slowly pulled away. I wondered, If I am scared, how can he feel brave? I wiped my face and tried desperately to catch my breath as I headed to work trying to keep from feeling guilty for sending my little baby off into a world so big.
In the last issue, Christian just started a program in a local Gainesville elementary school for developmentally delayed children. He was just 2 ½ when his journey as a pupil began. He seemed to love the structure of school and all the new things to learn. They incorporated most of his therapies during the day including occupational, speech, and social skills training. When they weren’t working on building skills they were trying to teach him self-help skills like potty training and tying his laces.
Most often you would catch Christian with that hazy stare, like he was in a faraway place. At times I would just watch him ‘play’ and wonder what was going on in that little mind. He didn’t play with toys as other children did. He was more interested in how they worked or moved (or how it could come apart). His days at home were pretty much a mirror of what he did in school. I learned very quickly that any interruption of his routine would send him in a tail spin of anxiety. We hung a Velcro schedule in his room just like the one in his class. That schedule was also mirrored in his communication book with hundreds of little Velcro pictures I used to communicate with him.
His OCD really started kicking in during this time. He learned that I could drive him to school by taking a route that only used left hand turns. He would have a full meltdown anytime I went another route. This obsession with routes and roads and how they connected (in his mind) sadly, went on for years. During this time his diet also seemed to get worse by the day. We were down to only a few very unhealthy choices and condiments. Yes, I said condiments. Christian’s idea of a tasty meal consisted of a tall glass of MILK and a plate of canned green beans and ketchup. As his diet declined, so did his mental clarity. He seemed to be slipping further and further into a dark abyss.
During dinner one evening when Christian was about 8 years old, his 6 year old brother Jacob was telling me about his day at school. When suddenly Christian jumped from his chair and threw himself in my lap and started to sob. When I turned him to meet my gaze, something was very different. His lost hazy stare was gone. His face seemed so different. Even his facial expressions were different. At first I panicked. I had never seen this before and I wasn’t sure what was happening. And then I started listening to the things he was saying. He was talking so fast I could hardly keep up, franticly trying to absorb every word. Christian snapped out of “his world” and was right here in mine. He told me that he was sorry for all the times he hurt me. He told me he loved me more than anyone and he knew how hard caring for him was on me. And then he grabbed my hand with both of his, wrapped his fingers around them and thanked me for being his mother. I’ll never, EVER forget that he used the word MOTHER because he called me mom from the time he learned to speak again and nothing else. He looked at his little brother and told him that he looks up to him so much and wants so badly to be like him. He sobbed as he spoke and the two of us sat there hugging him and crying. And as a patient with Alzheimer’s disease slips away right before your very eyes, so did Christian. Back into a world of anxious energy. I watched his face and his body as the stiffness came back. His eyes once again met with a haze. His brain locked away in some faraway place. Once again, he was the Christian we all had come to know.
After spending the next 20 minutes in my room crying my eyes out, I wrote it all down because I never wanted to forget a single bit of it. What I didn’t realize was I would spend the next 4 years holding onto that memory because it was the only time I felt a true connection with my son. That is until our lives were forever changed.
Four years had passed since his episode in our dining room, where his brain was set free and it was without a doubt the best 8 minutes of my life. Christian was my first born and even though I was now a young single mother, Christian was my whole world. If you saw me, you saw him on my hip with the biggest smile of his face, and twinkle in his eye. The first 18 months of his life he hugged, kissed, and cuddled me every second we were together. Never knowing that in 12 short months I would receive the worst news of my life. After 5 hours of observing Christian and 800 questions later (literally), a highly respected Doctor that specializes in Neurodevelopment disabilities in Gainesville, FL would tell us our fate. AUTISM! He told me that Christian’s autism was very severe and that he would probably never speak, and that he could remain un-potty trained even past the age of 9. As I sat in that chair, I was overwhelmed by all the devastating realties that were being laid out in front of me, but what I was about to hear was enough to light a fire that would burn for a very long time, possibly forever. I was told that due to Christian’s severity along with the size he was expected to be, that he would become too violent for me to handle and that it was almost certain that he would have to leave my home, and live somewhere else by the age of 15.
As the years went on, Christian grew in size and his aggression grew as well. When he reached the age of 12, he was 5 foot 8 inches and 190 lbs which made him an inch taller and 60 lbs heavier than me. He was very angry and negative most of the time, especially when he was being forced to participate in activities to which he was not attached. He had moments that he seemed like he might be doing better but then a meltdown occurred. When these meltdowns occurred, it affected each one of us. Days like that stole a shimmer of hope from us all. Christian would become physically violent, and I would have to restrain him and hold him down until it stopped. Jacob would usually be standing in the doorway looking so helpless and scared with tears running down his face. It was starting to happen more and more as he went into puberty. I was beginning to be very unsure of our future. During this time, I was getting back into the work force when I received a call from a Dr. Randall Haas to come in for an interview. We hit it off and I was his new office manager. Only after a short time of assisting Dr. Haas with Nutrition Response Testing patients using applied kinesiology and nutrition, I was amazed at the results we were getting. In my 15 years of working in the medical field, I have never seen anything like it. These patients turned their back on Allopathic (drug oriented medicine) and were seeing real results using a holistic, natural approach to total health. It was during an exam of a patient we were chelating for toxic heavy metals that a light bulb went off in my head. When I asked Dr. Haas if he thought this approach could help people on the Autism spectrum, I saw that same light bulb in his head light up. From that day on we spent all our free time researching medical abstracts. Autism Research Institute published a study using 27,000 parent ratings of Behavioral effects of biomedical interventions since 1967. The study included drug oriented medicine, along with Hyperbaric Oxygen therapy, Detoxification-Chelation therapy, Methyl B12(sub cut) supplementation, and of course the Gluten-/Casein Free Diet. Our method of Detoxification-Chelation therapy, Methyl B12(sub cut) using Nutritional Response Testing was rated on a 6 point scale as the most effective treatment in regards to better behavior and overall health for children on the autism spectrum.
As you can imagine we were ecstatic and very anxious to do Christian’s examination. The first thing we did was a hair analysis for all heavy metals and/or chemicals. We wanted to be able to show the cross reference with lab results versus our testing methods. We then examined him and we did indeed find it. The top five most toxic metals that exasperate Autism: Mercury, Antimony, Aluminum, Titanium, and Lead. He had them all as well as Tin, Copper, Chromium, and Cadmium. Our examination also showed that his Liver, Pituitary, Thyroid, and most importantly, his “Leaky Gut” or Colons all needed major work. We put together a specialized treatment plan based on our findings and got started right away.
He began treatment in November of 2013. It was very slow in the beginning, as I knew it would be but after 5 months of bringing him in once a week, BIG changes started to happen. And on March 7, 2014 while Christian was lying on the exam table, Dr. Haas asked him what he asks every patient. “What’s different…good or bad?” I was not at all prepared for what happened next. Christian replied “I feel less Autistic.” I couldn’t believe my ears. All Dr. Haas and I could do is look at one another, and then back at him. We were speechless!! I will never forget that moment for as long as I live.
A few short weeks later, Christian’s team at school called me in for our annual IEP meeting where the first topic on the agenda seemed to be the drastic changes they have recently seen in him. I was being told nothing but positive things. He was much more willing to participate and I even believe one teacher said he has been an absolute pleasure in her class. As I sat there listening to this I realized that the changes I was seeing at home was REAL! As my smile grew bigger, they asked me what I was doing different. I simply said, “Biomedical Intervention”. Because we were correcting his body’s root problems, he became more successful in everything he did. Going through the treatment has not only helped him socially, academically, but Christian now eats healthy. He lost a total of 32 lbs. He eats a salad every day. He no longer drinks milk, nor eats anything from a box, bag, or can. His mind seems so sharp and his sense of humor and sociability is remarkable. He will always be ‘Christian’ and probably will always be autistic, and that is just fine with me.
But what he has now that he never had before is a real chance at what I know will be an amazing life.
In this issue I will be telling a story about AJ, a very special boy who has not only changed us as healthcare professionals but also how we view Autism.
Breakthrough Autism-The Metal Free Way is a program offered here at Breakthrough Healthcare (formerly Haas Chiropractic Center) that focuses on removing the triggers that exasperate autism symptoms. Triggers like heavy metal poisoning, glutathione deficiency, probiotics and food stressors such as raw milk, eggs, wheat, soy and others.
AJ came to us at about 11 1/2 years old. Mom and Dad stated that he never spoke much although he was very vocal in his own way. He would often mimic his family and repeat words if prompted to do so multiple times. His eye contact with myself and Dr. Haas was very limited if at all. He was also not very compliant when we began treatment, as it is a very “hands on” process. More often than not, it would take us longer to get him on the table than it would to get through the entire exam. He had to have his iPad with him during every moment of the 20-25 minute exam. Many times it still wasn’t enough to hold his attention and distract him from the muscle testing necessary to determine his needs. But AJ did come around and after a few visits he realized that this was “his office” and we were helping him. We always make sure to schedule our Autism Kiddos when they could be the only “kid” in the office and let them roam and explore and get comfortable.
During AJ’s exam we found multiple areas of concern. In addition to his food sensitivities, he was found to have Chromium, Aluminum, Mercury, Copper, Nickel, and Iron. Along with pesticides, and Petroleum Solvents (isopropyl alcohol).
To counteract this, AJ was placed on a special diet eliminating foods we found troublesome to his system and given supplements. On 11/21/14, within one month of going through treatment AJ’s parents reported that his speech was more frequent and he seemed to be trying to speak to others more often. Mom also reported that his bowels seemed much better. We were very pleased to see such great improvement in one month’s time. His Aluminum and Mercury were chelating (detoxifying heavy metals) at the appropriate rate as well.
Today, after only 6 months of what could be a 2-3 year process, AJ is making BIG strides in the right direction. He comes into the office and says “Hi!” and walks right into “his kid room” and makes himself at home. He gives hugs, and high 5’s, and he has not had used the iPad once this year to come into the office for treatment. His parent’s also stated that he doesn’t need his iPad at church anymore. Instead he stands up, and sings, and claps along with the congregation. AJ also said his sister’s name for the first time UNPROMPTED and this is a win that maybe only parents of children with Autism can even comprehend. AJ is an Amazing boy with such a bright future ahead of him. Will he always be on the spectrum? Yes, possibly. But he is going to be given every opportunity to live TO HIS FULLEST POTENTIAL.
November 14, 2014 is a date that changed the direction of my life forever. This was the date I received the autism diagnosis for my 2-year-old daughter. Due to mother’s intuition, I knew for some time this day would come despite others (like her primary care physician, speech therapist, etc.) telling me I was “overanalyzing” her due to my profession as a mental health counselor. As I dove in head first, I spent the entire day researching what to do and as equally important, what NOT to do. As a mother I wanted to do everything humanly possible for my daughter to provide her with the best chance for success. Doing the research, I quickly became overwhelmed as I found out there are a myriad of options available in many different areas: Mental Health such as play therapy, parent-child interactional therapy, animal–assisted therapy (canine and equine), and social skills training; Behavioral such as applied behavioral analysis (ABA) and Floortime; Medical such as gluten and casein free diets, pharmaceutical medications, and vitamins; Alternative and sometimes controversial such as hypobaric chamber and chelation; and Applied such as speech, occupational, and physical therapy.
The unique treatments I will discuss in more detail are play therapy, animal-assisted therapy, and combination therapy. I believe these treatments are very effective as I’ve seen the power of them from the standpoint of being a professional who has provided them as well as a mother who’s daughter has received them. Play therapy utilizes a child’s natural language (play) through their words (toys). It helps children learn more adaptive behaviors when there are emotional or social skills deficits. It is natural and enjoyable! Animal-assisted therapy uses a dog or horse as a co-therapist. Children are naturally drawn to animals and are typically more relaxed and comfortable around them. Lastly, a combination therapy is using play therapy with animal-assisted therapy or applied behavioral analysis with play therapy to incorporate the best of two approaches into one. These approaches can also be used with other special needs and/or behavioral and emotional problems.
Choosing a treatment path may feel overwhelming. Treatment for each child is as unique as the disorder itself. One of the logos for autism is a puzzle piece, due to the complexity of the disorder. I like to use this same analogy for the treatment of autism. I believe to adequately treat autism, many of the treatments above are necessary to complete the full picture. It is so difficult to find the time to travel to all the providers necessary as well as for those providers to collaborate. This was one of the most frustrating things for me as a mother as I wanted to provide my daughter with as much treatment as possible but found it difficult to manage it all.
Due to this issue, I decided to open up a holistic treatment center, Therapeutic Butterfly Effects (www.therapeuticbutterflyeffects.com), offering many of the approaches above- play therapy, animal-assisted therapy (canine and equine), applied behavioral analysis, speech, occupational, and physical therapy- under one roof so that families are able to get effective treatment with multiple approaches with collaborating providers. As a mental health counselor, I can combine treatment methods to provide play therapy in combination with applied behavioral analysis as well as play therapy in combination with animal assisted therapy. Additional providers in my office provide speech, occupational, and physical therapy in collaboration with the other providers. My goal was to provide a place where families can come to get most everything they need while saving time and money and reducing confusion and frustration.
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