If you haven’t read Part 4 yet, you can read here!

A New World

I have been working with this piece for at least a month now. Trying to find the right words, the right advice and something that any reader can take away from our story. As I noodled with these ideas I started to realize everyone’s journey is different. Everyone’s belief system on his or her life journey is different as well. Everybody’s perspective is unique. When I created the Delicate Belly blog, I wanted to be able to open people’s minds to the idea that food can heal. Share with them how this approach had worked so well for us. I wanted to give guidance and hope to mother’s like myself and tell them we have been gifted these incredibly beautiful and sensitive children. Sadly, the world may not see it that way, but our children are perfect. They are perfect for them, they are perfect for us, and they are perfect for the world.   In the Autism world, what I perceived as a challenge completely transformed me. It has made me whole again. Yes, you read that right: Autism has made me whole again. It has transformed and healed me.

I could give people step-by-step strategies on what we did (and continue to do) to overcome our diagnosis. I could list every practitioner we have seen, every treatment and modality we have tried, and every diet we embarked on. I could tell you how many times we started over or how I knew it was time to try something different.   I have it memorized! When we received our diagnosis I truly believed recovery was possible. My biggest wish was to find somebody that had recovered their child and get them to tell me how they did it. I was in this endless search for answers. I was desperate to fix my child. For the longest time I chose to believe it was my fault. I second-guessed myself so many times on the decisions I had made; fearing that my child was going to be doomed and it would be my fault. Until one day it dawned on me: This experience I was having had very little to do with Autism or even my son. This journey wasn’t about my son. He was happy the way he was. I was the one that wanted more for him. This journey was about me.

The first step to solving a problem is admitting you have one. Well, I could see my son had a problem, so I poured all my time, money and energy into him. Because this is what a loving mother does, or so I thought. I would find myself miserable, crying myself to sleep. Racking my brain to solve this puzzle, totally oblivious of my role as it related to myself, as if I didn’t matter. I consistently pushed my feelings and needs aside until I was numb. I was reacting to life and fighting situations as they came like a soldier in a battlefield. I was constantly sick with sinus infections and a cough that would last for weeks. My body was crying out to me, desperately asking me to pay attention.   But the devastation of Autism was the only thing I could see.

I travelled to Massachusetts to spend 5 days away from my children at the Autism Treatment Center of America. I was really sick at the time but I went anyway. I was at the end of my rope and didn’t know what else to do to help my son with his angry outbursts. He was 3 at the time and non-verbal. We would come home from his crazy busy schedule of therapies and interventions completely charged. He was possibly busier than I was, working extremely hard on things we all assumed he needed at the time. The van would pull into the garage and that eerie feeling would start creeping up on me. I knew my son was about to explode. We would walk in the house, he would hit his little brother that was at the door waiting for him. He would poop in his diaper, rip it out of his pants and hurl it across the room. It was a poop fest. We would try to hold him down and clean him up, quickly put a new diaper on so he would not continue to pee or poop on the carpet.   He was little, but it was like he turned into the Incredible Hulk. He would hit everything and everyone in sight, as well as cry incessantly and bite. It took two adults to hold him down. All I could think was that when this child grew up we would not be able to hold him down anymore. This aggression had to stop. At the Autism Treatment Center of America I realized there was a very simple reason for his behavior. My son had almost no control over any aspect of his life and he had no other way to communicate that to me. Pooping and peeing was pretty much the only thing he had control over at that point. He was teaching me; life had to slow down and I had to look in the mirror. He was acting like I maniac, but so was I in my attempt to get him to do what I wanted. I was just as charged as he was, and that combination was explosive!

My child is my teacher. That was one of the lessons I learned in those 5 days. I was still skeptical and had to put that lesson to the test. The van pulled into the garage and I chose to be the calm in the middle of the storm. I took some deep breathes realizing that if pee and poop were going to go everywhere I would have to clean it up regardless, weather I was angry or not. At that moment I chose to let it go. Letting go was all it took and I never saw that type of aggression again. Since then I have chosen to trust my child, as he has taught me to look in the mirror in every situation.   He taught me to look inside, exploring how I felt and what I believed about it. By exploring my belief systems I began to heal my own wounds. But the greatest lesson I learned was to just be present, in the moment. I wanted to celebrate my child, not miss any opportunities to connect with him and form a beautiful and trusting relationship. In the beginning, his “green-lights”(that is what we call the opportunities he gave us to connect by looking at us, touching us or showing interest in what we were doing) were very quick and fleeting. I had to be extremely present to pick up on those signals and give him a response. I wanted him to know that I was paying attention and that his efforts were worth it. With that understanding I discovered how important it was for me to be in the moment. Later I learned that being in the moment is the easiest way to connect to God and the divinity within me.   That has been the most wonderful gift my son has given me because he was always present, in his own way, while I was merely attached to the past or the future. I was missing out on the joy of life.

Earlier I mentioned how children with Autism are perfect for the world, even if most of us don’t agree with that view. This is how I got to that conclusion: In the beginning of our journey, one of the first things I read was about the relationship between Autistic symptoms and toxicity overload in the body. There is actually an extensive body of research that supports that theory. I believe that if we continue to treat our planet the way that we have, we may destroy ourselves in the process. Children with Autism are highly sensitive to toxins that are contained in foods, such as additives and pesticides, chemicals found in household or gardening products, or even chemicals added to our water supply (just to mention a few examples). My child has taught me through his sensitivities to pay close attention and read every product label. We have completely removed household chemicals from our home, including the most common personal hygiene products and pharmaceutical drugs. We have also inspired our extended family to do the same. We now choose to use products that are gentle to the body and the environment. We also prefer to support farmers that grow their crops and raise their animals organically, we do our best to avoid genetically modified foods, and opt for natural remedies and personal hygiene products.   We also support health care practitioners who have a holistic view on health and healing. By adopting this new lifestyle I not only saw tremendous progress for my son, but also found healing for me. These days I am rarely sick, have more energy and a love for life once again. By learning to care for my sensitive children I have learned to also care for our planet and myself.

Everything I thought I was doing for my child with Autism I was actually doing for me. That realization empowered me and I no longer felt like a victim. I learned that I have the power to turn an unpleasant experience into a blissful one by simply changing my beliefs about it. I can choose to be the calm in the middle of the storm. At this time I would like to invite you to explore your feelings and beliefs about Autism. I welcome you to embrace the idea that loving is your experience while being loved is somebody else’s experience. Autism has taught me to nurture myself. It has helped me understand that I am doing the best that I can. My little guy is also doing the best that he can, and so is everybody else. Autism has taught me to trust my instincts. It showed me I was stronger than I ever thought I could be. During this journey I have also learned how to live in a more harmonious way with our planet. For all those reasons I have embraced Autism in my life experience. I used to hate Autism and what I believed it had done to my child. After some self-exploration I was able to find the gift in what once I believed was solely a devastating diagnosis.   Autism completely shattered my world once and at the same time, it completely transformed my life. My world has been renewed; my heart is now full and my life has turned into a very joyful and exciting adventure.

PS: I would like to acknowledge all the people that came to our rescue during the past 4 years.  Our family, friends and community really came together to support us in any way they could.  Some donated money, some donated (or continue to donate) countless hours in Leo’s playroom to inspire him to join our world.  Others have donated their time to babysit our youngest or an extra pair of hands in a fundraiser for our Son-Rise program.  These amazing individuals have changed our family’s life.  We are so blessed to have been touched by each one of them.  Thank you from the deepest part of my soul and may you be blessed a million times over!

 

If you haven’t read Part 3 yet, you can read here!

The Turning Point

2011 was definitely a difficult year for our family.  We had come to learn about Autism diagnosis coping and adapting as best as we could, and yet there was another bump in the road ahead. While our autistic son had about 5 or more poopy diapers a day (still at the age of 2),  our youngest, just a few months old at the time, didn’t poop at all.  He would go days, weeks and even a whole month at one point without pooping. We had a new pediatrician at that time.  I went to see her because she also had an autistic son.  Unfortunately she was not concerned about the extreme constipation symptoms experienced by our baby, even telling me it was not worthwhile to go to a specialist.  She said a specialist wouldn’t tell me anything different than what she had told already told me.  Miralax and prune juice should fix the problem. But after all I had read and learned from Autism, I felt something serious was going on and decided to go see a GI specialist on my own.  The only downside was that without a referral we had a long wait until we finally consulted with a GI doctor at Children’s Mercy Hospital.  After an agonizing month of no poo, some tests were run and our baby got diagnosed with Hirschsprung’s disease.   A congenital and life-threatening disease in which a portion of our son’s large intestine didn’t contain nerve cells that were responsible for its peristalsis movement.  That explained why  our baby didn’t poop.  His colon had expanded so much he needed emergency surgery right away. Fast forward 3 months, lots of research and 3 surgeries (and a colostomy bag), our baby’s life was saved and our lives were somewhat back to normal.

I was grateful but at the same time I was a mess.  I found myself in a really dark place.  I didn’t want to make a big deal out of the events that had transpired that year; after all, we were figuring things out and making great strides toward our road to recovery. But I felt really alone and close to being burned out.  Every fight seemed like an up hill battle. I felt I was met with a lot of resistance for my ideas about Autism and recovery.  Looking back that was all I talked about. I would eat, sleep and breath Autism.  I felt like every decision I made would make or break my child.  I also felt incredibly guilty about his Autism.  I, at one point, believed that I had caused his Autism and ruined his life, so it was my responsibility to fix it.   I talked to God a lot during that time (wait, I still do) and I can’t remember how it happened, but I found a book called “Autism and the God Connection” by William Stillman.  I consider that my first “awakening” to Autism and spirituality.  For the first time in a long time I experienced a sense of peace.  Finding that sense of peace turned out to be what I needed to feel invigorated and ready for what was to come next.

One of the first books I read about Autism is called “Louder Than Words”.  In this book Jenny McCarthy shares her son’s story of recovery.  One interesting thing she mentioned in that book had stuck with me.  She said that every parent of a child with Autism should go to an Autism Conference at least once.  And boy, she was right!   In 2012, there I went to Autism One.  This conference was definitely the turning point for our family. I think it was then my dream of recovery really seemed achievable.  I went with two of my favorite mom friends and there I discovered 3 things that were crucial pieces to our recovery: chiropractic,  pathogen removal and The Son-Rise Program. I learned about oxidative stress, the role of viruses, pathogens and gut microbiome.  Most importantly, I learned that the autism diagnosis was not just about what was going on with the body physiologically (which usually is not what mainstream medicine believes, but that is where I started my search for recovery). There was also a social-relational factor that needed to be addressed: The difficulty kids diagnosed with Autism have to connect with others.

To be more specific, these were the things I learned during Autism One that year:

In a presentation by Dr. Tony Ebel, Certified Pediatric Chiropractor, I learned about the role of oxidative stress in children with Autism. He says:

“… most every child we see with spectrum disorders has two major challenges at the root of their issues: An overstressed nervous system that is stuck on the “gas pedal” and thus in protection mode right from the beginning of life, or even before. Therefore an amazing quote by Dr. Bruce Lipton summarizes both the cause behind the issue, and if we really understand it, the solution as well. His quote states, “You can’t be in growth and protection at the same time.”

Dr. Ebel was so kind and helpful.  He offered his personal e-mail address to connect us with a wonderful doctor in our area.  That is when we started seeing Dr. Alyssa and Dr. Amanda at First Choice Chiropractic. Using applied kinesiology they were able to tell us what our son’s body actually needed in respect to supplements and treatments. Their accuracy was astounding and to this day we still see them.

In another presentation I learned about the role of pathogens in children with Autism.  Pathogens such as viruses, bacteria and even parasites, which come into the body as what we call the transitional flora, take advantage of a compromised immune system to develop, taking nutrients from their host and also secreting neurotoxins.  While pathogens thrive, the host suffers from several ailments linked to nutrient deficiency and fail to thrive themselves.  Some kids don’t grow or gain weight no matter how much they eat.  They also crave sugars and starches, refusing other foods.  Exploring the roles of pathogens in my child’s body and using different protocols to eliminate them was an extremely helpful piece to our recovery.

In Raun Kaufman’s presentation I learned about The Son-Rise Program. Raun was severely autistic as a child and has grown to completely recover with no traces of his previous diagnosis. This program changed our whole perspective on what Autism even was.  The Son-Rise Program offers a loving and non-judgmental approach to Autism.  Their philosophy helped us recognize that our child was doing the best he could and his behavior was telling us something important about him.   We learned, instead of stopping his repetitive behavior, to use them as a bridge to connect with him.  As we did when he was a baby and we babbled in response to his babbling.  I learned how important it was to be present with my child.  Using that approached I was able to allow myself to join and explore the wonder in my son’s fascination for jumping and flapping his arms, running in circles, flipping the light switch on and off, or spinning the wheels of his cars.  Through that process I was able to inspire him to look at me again, call me mommy and tell me he loved me for the very first time.  I remember at one of our sessions he looked at me longingly and gave me the warmest, most genuine hug, as if he was saying “Thank you”.  This program was and continues to be an incredible experience for us.  It taught me that it was more important to wait for my child to be ready to connect with me, creating a trusting relationship, embracing his uniqueness, even when they seemed odd or uncomfortable to me.  The most valuable skill I have learned from the Son-Rise Program was to explore my own belief system.  Exploring how I felt and why I felt a certain way.  But one of the most important realizations of all to me was that all the work I was doing to recover my son I wasn’t doing for him.  I was actually doing it for me.  That was extremely empowering to me.  It allowed me to experience the journey without being totally fixated with the outcome.  I still believed in his recovery but I was no longer attached to it.  With that mentality we have been able to create a bridge between our son’s world and our world. And with that we accomplished so much that most experts believed impossible. For more information on the Son-Rise program visit http://www.autismtreatmentcenter.org.

Through all these interventions we experienced the miracle of being able to connect with our son once again.  He was present and tuned in like never before.  But there is more to our story!  This blog is mostly dedicated to healing through food and it is my mission to share everything I have learned and continue to learn through our healing journey.  But the healing process is not just about the body and the mind (although I have one more story about that).  But it’s important to consider that true healing involves the body, the mind and the soul.  Stay tuned for the last chapter of this story about love and healing!

To read the final part of our story click here!

If you haven’t read Part 2 yet, you can read here!

Adventures with Behavior Therapy

Have you heard of this Autism puzzle? Yes, the puzzle is the symbol for Autism, probably because most of us don’t really know what is going on with these children. After our diagnosis meeting it was like somebody took all the puzzle pieces and threw them off a cliff. Our psychologist gave us several tips on what to do and what books would be helpful during that visit. One in particular was called “What You Can Do Right Now to Help Your Child with Autism”. She told us about the concept of “joining” and a wonderful program called the Son-Rise Program (which was the turning point in our journey and I will be discussing in a later chapter). It was a lot of information! I had so many questions and was completely overwhelmed. The mountain we were about to climb looked enormous. To complicate things she recommended something different in her report than what she had told us that day. The list of to do’s was long, including 40 hours of behavior therapy (also known as ABA), which later I found out was the very opposite of the Son-Rise Program. Very confusing to say the least and to be honest, looking back, most of what was on that report was just not helpful. But it was a start. At that time we followed it as best as we could.

Since ABA was the most popular intervention at the time (or so I thought), I talked to our lovely First Steps (you can read about this program on part 2) case manager and she found us a therapist right away. Alice was lovely. She was boisterous, bubbly and fun. She was also very honest and open with me. Even though Leo was non-verbal, she heard him babbling and said with confidence that he would talk again. She shared that she had worked with much older and more aggressive kids before and was excited to work with a 2-year old. In one instance she said one of the kids she worked with tried to hit her with a baseball bat and she was done working with older kids because of this. After her assessment, we got to see Alice 3 times a week for a of couple hours. I am not going to lie. In the beginning the sessions were grueling. Very lovingly and gently Alice would wrestle with our son; to get him to sit down for a little bit of time or to get him to follow a directive. He cried so much during those sessions. She explained to me that if I came to the rescue I would not be helping him. She assured me that as we did that he was going to come around and learn what he was supposed to do. In my mind she was the expert, so I sat and watched with a heavy heart. I was to learn all the techniques to help my child to behave the way society (or whomever came up with ABA) saw as appropriate.

Nobody wants his or her child to be rejected by society. That was my biggest fear. Today I can see most of the decisions I made during this journey that were based on fear did not work out. Alice told me that children with Autism were not capable to learn naturally and using the ABA method would help them learn to behave appropriately. There was a list of things ABA needed to address, especially the repetitive behavior that presents itself with kids diagnosed with Autism. In our case the spinning, the jumping, the hand flapping, (among other behaviors I can’t even remember anymore) had to be stopped.   Little did I know that those behaviors were my son’s way to cope with the world at that time, and later would become the bridge we would use to inspire him to connect with us once again.

Another very common trait in Autism is the lack of eye contact. So Alice would hold his face close so he would look at her. She would hold him down so he would stay seated when she asked him to sit in place. She would put her fingers under his armpits to get him to stand up when his body went limp. Our son was very resistant to the Alice.  She loved him; I knew she wanted the best for him and the best for our family. Most people working with special needs children have love in their heart and want to help. Can you ever go wrong with love? In this case you can. The problem lies in the perspective a therapist, aid or psychologist is coming from. I have found that to them, teaching a child to behave by their definition of what was appropriate superseded the need to build a relationship with that child. Another problem I found was that ABA seemed to be focused on teaching a skill by having a child follow a drill over and over again. Because children with Autism tend to be more rigid in their routine and the way they behave, teaching them to learn a skill with drills seemed to accentuate our son’s rigidity. If things didn’t happen exactly the same way he expected, he would become unhappy and aggressive. In turn I would be unhappy and frustrated, adding more “fuel to the fire”. It was a very dark time in my life.

During our ABA days I would sometimes ask myself these question: What if a stranger came up to my son and told him to come with them? Would he do it? Or what if I asked my son to do something, would he expect a reward for performing a task every time? After all he was constantly prompted and asked to perform by every adult that approached him. Would he grow up as a person that would not want to connect with anyone because he had been taught to perform for everyone that approached him? I watched my son giving in and following the script. He behaved like a little robot, repeating his script word for word without even the basic understanding of what it meant. He was learning to do what he was told without question. Would he ever stand up for himself? When language started coming in, it was rote. I posed that questions and someone said that rote language was better than no language. But he was also becoming more rigid, tense and aggressive. I loved Alice and I cherished the somewhat dysfunctional relationship she had developed with my son. They now would play together and she would celebrate every successful request and drill he performed. But when she left we were left with an inflexible child that had no interest in connecting. He was tired and he was done with all that work.

Once our First Steps program days were over, it was recommended we place our son into early childhood education through our district and an ABA clinic. The ABA clinic was a new concept at the time in our area. The dynamic there was very different than the dynamic we were used to at home. The place had many young adults in training to do ABA work because ABA therapists were in such high demand. (Did I mention the cost was astronomical?) They seemed really fun and loving at first but I was no longer allowed to watch the sessions. Our son was taken into a small room filled with toys but no windows and worked with a few different people for 3-4 hours. The director of this clinic, a child psychologist, said that our sessions would be videotaped eventually but that didn’t happen during our time there. When I would pick him up I was given very little information on what went on during that time. I was told the clinic was still trying to get their bearings and protocols in place. It was frustrating but I still believed that was what was needed at that time. I once more didn’t listen to my intuition that was telling me that place was not right for us. Kids there seemed unhappy and so did the adults working with them. One day, at pick up, I noticed my son’s diaper was very heavy.  I worked on changing him right away and noticed that he had a dirty diaper for a while. He had a very painful diaper rash. It was a Friday and he cried a lot during that weekend. I called the clinic on Monday to tell them what had happened and asked who had worked with my son that day. The Director was not on my side and refused to tell me. She said she needed to protect her employee.

I was very upset with the ABA clinic, and also with myself, for not listening to my inner voice. But what happened was a clear sign it was time to get him out of that place. Better late than never. After a year of ABA there was still no eye contact and no interest to connect, the two things I would find later were the most crucial pieces for my child to be able to connect to others around him. But there was a big breakthrough coming! What I was to learn, as that chapter of our lives came to a close, would shatter my view of ABA therapy and Autism forever.

To read part 4 click here!