I walked into his room and his smile lit up and with a giggle he shared “look it transformed into something new”. I looked over and saw that he had stacked his trains to create a new train and reveled in the fact they rolled so perfectly across his crib rails. Who knew. Then I replayed his words again, transformed into something new….and I couldn’t help but think of our little boy.
I have been wanting to share with you, but hesitant to protect our new reality, I have been afraid to say a word. Afraid that at any moment our fear may swallow us up and take my little boy again. But now that is has been a few months, and we have awoke many mornings to have our little one gazing into our eyes, I feel like I can shout out our joy from the steady feet of reality.
It started as a pull, a pull on my heart that there was something more. Something to be explained, to be understood, something to make sense of what I was feeling. For my heart was completely invested into one reality I begged to make sense of…how can my little one be so present in one moment, so awake and with us and yet so far, far away the next. How can I feel like when he is away, he is thousands of miles away waving a flag of surrendor. In those moments my soul would weep. Weep and wonder if he would ever sing with me, ever know the love of a friend, lover and most of all me. It was as if the earth in a sense of cruelty would allow me to see my boy and connect for a moment and in the next it would seperate us on deserted islands oceans apart. The sense of longing is indescribable.
Only it wasn’t only my reality. It was the reality of everyone who loved him. I must mention, there is no denying that Jackson’s world, where he would escape, was full of joy. For even in my most desperate moments I felt amazing respite in his abundant joy. But I couldn’t help the feeling that there was more. If he was so alive in one moment, I knew he was in there. The explanations were plentiful by the experts, the resounding answer to my question: that is the autism at work.
After living abroad for the last ten years my digestion has had a very difficult transition to the American diet. In fact, this last year I have had to go to great measures in order to find relief. Our home has become a whole food kitchen in which I date back 100 years and make every single element from scratch. It has been its own journey to write about on a different day. But in my research I kept finding myself reading one or two sentences over and over….it can affect children with autism…the it would vary but autism and diet were a resounding fact. I remember one phone call to my mom in which I was so mentally and physically exhausted that I asked her to pray for my strength, for I knew I needed to investigate what I was reading but I wasn’t sure if I had the mental and physical resources to go there.
It wasn’t an hour later that I read an article about a milk protein, casein that fatefully started my dive.. For I walked away from my office just as Jackson was finishing up his cup of milk and noticed he was pinching his belly over and over. I made a note of it and added it to my game of cherades, for often that is the best way to describe our reality.
That evening he had another cup of milk and there went his little fingers pinching again. I asked him, does your belly hurt? He, looking away, answered a very quiet yes.
I talked it over with Matt and we decided we would cut out dairy for a few days and see if his tummy felt better. This was a huge decision for us as Jack only ate 5 things and milk and dairy were at the top of his personal food chain.
What happend next delivers goosebumps as I type. Within hours without dairy he made substantial eye contact, within a day he started his first back and forth conversation with his brother, within a few days we had eye contact and a hello to the neighbor child. To understand the impact that this had on our hearts, you must know that Jackson often times didn’t see children. He would often bump into them in extreme avoidance as if they genuinely were invisible. He would make eye contact but it would only last a fraction of a second and his relationship with his brother who wanted nothing more than to love and be loved was strained to say it kindly. So this difference was monumental. It was so promising until it would disappear as soon as it came.
Seeing this transformation inspired me to dig deeper. For the next two weeks I went in. Read every article I could find, research document, medical journal. I was on a personal vandeta. It was all consuming and was my first, last and every thought. Matt later mentioned that he thought he had lost me too. But there was nothing that would bring me refuge more than understanding.
Jackson was five days casein free and his therapists started asking what I was doing, because they could not believe the transformation. They exclaimed with smiles so wide their faces could barely contain them stating that he was a different child and as much as my heart would pitter patter, the fear would come in that this could be temprorary. He could be gone again, any minute.
And that was just what happend. One day after all the glorious eye contact and glimpse into his world he was gone. Eyes glazed over, not responding, gone. I drove him to therapy heart broken. It was just what we feared, a peak and then the sporadic valley of hit or miss. The therapists and I tried to figure it out. He had just had a smoothie…with almond milk and several fruits and vegetables. How can it be, that that would do it?
So I dug deeper. Praying to find something to make sense of it. One Saturday morning at 9:30 am, I had already been reading and searching for five hours when I found it. Found the study that made everything make sense. Scrolling through and confirming what we had known that the casein protein in dairy creates opioid peptides and makes an opium based response in Jackson. YES, a drug like reaction occurs in his body making him zone out. What I read next made me literally jump out of my seat as my heart raced with excitement…the very last sentence of the study read: be mindful of spinach as it also contains opioid peptides in the form of rubiscolin. SPINACH, I had put 2 cups of spinach in his smoothie!
So we eliminated the spinach and our little boy was back. The progress that he made grew ten fold each day. Each day building on the next and the next. His therapists recorded his progress amazed and excited, my heart melting day in and day out as I heard him profess his love for me and our family and even sing along with me to the songs I had been singing to him since he was born.
His relationship with his brother grew too. They now played for hours at a time. Interacting with their imaginations and cuddles that I could see melting Jonathen.
Just last week we elimated that very last opioid peptide from his system….gluten. It took three months for the dairy casein to leave his body fully. Until that time it seemed as if the gluten didn’t bother him as much. For he still made progress with it and his stomach didnt hurt. Until last week when his little fingers started pinching his belly again only this time he ran over to me and said “Mommy, my tummy hurts”. We watched and sure enough, it was every time he had gluten.
I am amazed to announce, that with the gluten removal another beautiful layer of Jackson has started to emerge. Now if you were to meet Jackson on the street, you will be met with his eyes and a hello. He may even complement your shirt, or necklace. And if your little one is with you, he may even ask them to play tag.
I have to say, the next best thing to Jackson singing along to the songs I have sung to him for so long, is well, him singing along to the radio! The first time, just last week, I had to pull my car over and sing along with him. His eyes met mine and he made up words to go along with the beat as to not break our connection. I am happy to announce through my teary eyes that my little boy is here, here to stay.
We still have our autistic journey to follow, but now, it has transformed into something new…