I’ve always loved to write. Not long ago I found a wrinkled piece of lined paper in a box of my “memories.” Daily News was written in thick, pencil scribble. The lack of style, inaccurate spelling and backwards letters tell me I was probably six at the time it was composed. The paper vaguely documents my experience finding a couple caterpillars with my neighbors one summer. It appeared my intention was to start my own newspaper. And although I never saw that project through, it speaks to something deep inside me: I was born to tell my story.
I studied English in college because I chose higher education with the desire to learn, not necessarily to get a job. I figured I’d worry about a job later, when it mattered. At that time, college was my job. And I liked it so much I went on to graduate school and then taught reading, writing and critical thinking at the collegiate level. I figured at some point I’d write a book or start a blog once I did something interesting enough to document. I had no idea just how interesting my life would get.
One of my nonfiction writing professors constantly pushed us to flesh out our work by focusing on our pain points—literally to go deeper in our writing by helping our audience feel our pain through effective story telling. It seems likely that many writers and artists alike struggle with this component of creating as it requires extreme honesty and vulnerability. Writing feels a lot like removing a wet Band Aid, the skin under the wound is soft. As a mom of 3 boys, I’ve found that pain comes easily. When you love so big, you realize just how much you have to lose. Few things have caused as much pain in my life as my middle son, Alder. I say this not to blame him or shame him. I say this because he was diagnosed with autism before he was 3. And if you have a child with autism, then you know EXACTLY what I mean. Autism is pain in its most genuine form: you never know what’s going on in the mind of your own child and, seemingly, neither do they. How can you ever really bond with someone you never get the chance to understand? If you don’t know first-hand what I mean here, I think you’ll be able to relate to my story regardless. Even if you don’t have a child with ASD, you’ve probably struggled in some pretty major ways. None of us are immune to struggling. Pain may be the one solid, universal thing that connects us all.
The irony in Alder’s diagnosis is that I never really admitted he had autism until he didn’t have it anymore. What I mean here is that Alder used to have autism. He lost his clinical diagnosis nearly 4 years ago. He continues to struggle with "spectrum" symptoms (primarily dyslexia and social anxiety), but he no longer appears to exist in a constant state of suffering in a world the exists somewhere outside social normativity. And although he was considered an acute case, and he’s not completely symptom free, he is no longer considered to have the disease. He’s in recovery. Here’s the abridged version of how we found Alder...
I made it my job to “find” him because I knew he was in-there somewhere. I didn't have a epiphany one day that led me on this journey. No one gave me a roadmap. They don't exist for situations like these. Something inside me simply knew I NEEDED to help him, as I was the only person who could. My husband, now 9 years sober, remained shackled by his active alcoholism at the time. I was all alone--with my thoughts, with my deep emotional wounds that only those who marry an addict or raise a child with autism understand. My constant feelings of failure raising a child who experienced and unintentionally inflicted constant feelings of suffering and inadequacy, hidden behind long lashes and sparkling blue eyes would either drive me insane, or drive me to the unfamiliar territory of getting to the root cause of his and, consequently my own, suffering.
I knew the tantrums, inability to communicate, the wandering off, lack of eye contact, inability to play with peers or engage in imaginative play, the constant removal of all his clothes, the repetition of words, the lack of understanding, the lost look in his eyes were not authentically who he was. These were the symptoms of a sick child, not his true way of being. A mom in my peer group once referred to Alder as a Neanderthal. It was an unintentionally cruel yet mostly accurate description that not only crushed me, it motivated me. He was NOT a Neanderthal. He was sick. I believed he remained lost behind those symptoms and I was determined to find him.
I explored every possible modality I thought might help, starting with a program called Brain Highways where he and I worked tirelessly for hours, every day, on specified primitive movements in order to help him develop new neural pathways. For one year we didn’t miss a single day of working that program despite the fact that I was working full time. Even when we traveled, we still did our creeping and crawling in random parks or wherever we could find a spot to crawl. One Thanksgiving at our friend’s house, my husband, Jay, lead a small flock of kids on a trail through the kitchen, living room and dining room, army crawling in a line while their parents watched in awe. We often tried to make a game of it to engage Alder and other children in the room. He already played the role as an “outsider” since he didn’t know how to integrate with his peers. Can you imagine being a kid and not knowing how to play? At least if we could make his therapy inclusive, maybe he’d know what it was like to be part of something. Although I don’t know for sure, I figure it must have been lonely flying solo on planet Alder.
Although we made some progress, it wasn’t enough. Alder was kicked out of 3 preschools by the age of 4. I couldn’t take him to parks without fences because he would run off. One fall evening we lost him. He wandered out of our yard and I was sure he had drowned in the ditch that flowed through our neighborhood. I had already pulled him out of it that summer when he was stuck head-first. Thankfully, the police found him, and I’ll never forget the tangled emotions of fear and relief I felt when I held him back in my arms: Thank god he’s ok, but how long can I do this?
Feeling the limitations of small-town resources, Jay and I packed up our family and moved from our Colorado mountain town back to Missoula, MT so we could return to a larger community for Alder. We needed access to people who could help us, help him. We started with every therapeutic process I could find—body talk, cranial sacral, osteopathy, speech and occupational therapies. 4 doctor appointments every week for 2 years became emotionally and financially exhausting for all of us. With every therapy he made progress but would always reach a plateau. I dragged him down the biomedical rabbit hole for 2 years. For anyone who doesn’t know what a biomedical approach includes, it basically consists of taking supplements (instead of pharmaceuticals) to support the body’s shortcomings. I researched everything I could find related to autoimmunity, gut microbiota, MTHFR, epigenetics (need I remind you I studied English, NOT the health sciences?) healing the gut, therapeutic supplementation, vaccines, dietary protocols and other key concepts related to autism recovery. I felt lost and fearful, like I was drowning in an endless sea of information with everyone claiming to have the answers yet no one really did. With every inch of progress, we’d take a leap backward. It was my fear of never really getting to know my own child that kept me going. I believed I had 2 options: help him heal or build a garage apartment so he could live with us for the rest of his life. I went with option one.
We flew him to Chicago and to San Diego (twice) so he could work with medical experts in the field of autism recovery. He was given a billion supplements that we couldn’t afford. We learned how to administer subcutaneous injections and taught him how to swallow large capsules. We spent every penny we made finding alder because if we didn’t...garage apartment.
Every choice we made centered around his recovery. Jay and I had not been away as a couple after he was born because we couldn’t leave Alder with anyone. It was too big a liability for all parties. The only family vacation we took was one of our trips to San Diego to see Alder’s doctor. We brought the boys to Lego Land on free tickets. We maxed out credit cards and barely held onto our home in the process. And Alder wasn’t making much progress. We were drowning.
And then we were thrown a lifeline.
In May of 2015, we met a couple named Mary Jane and Scott Guidry at a work conference. She’s a nurse, he’s a surgeon. They recovered their eldest son from autism back in the 1990’s. He’s now in his late 20’s, a college graduate, semi-pro tennis player and coach. Enter: HOPE.
Mary Jane suggested we remove gluten and casein from Alder’s diet and explained how many ASD kids can’t break down those proteins. I had read about ways diet could help but one of Alder’s doctors discouraged us from making any dietary changes. He recognized our life was hard enough and suggested any dietary changes would only further complicate things. Most of my adult life I’ve eaten a healthy diet as I struggled with acute allergies and saw results in my own inflammatory symptoms from making dietary changes. I had the help of a Naturopath to guide me through the process. She based her recommendations on my body’s individual needs. Before meeting Mary Jane, I was afraid to implement any dietary changes to help Alder because I didn’t have the knowledge or confidence to know what would help or what could harm him. I had no one to guide me. We tried her suggestion because, well, at that point if you would have told me that simultaneously clapping 3 times, jumping on one foot and shaking a jar of walnuts would help, I would have done it. And she knew what she was talking about because, not only is she a medical professional with experience with ASD, she’s a mom who understands first-hand what it’s like to have a child like Alder. She knew how badly I wanted to find my son because she wanted to find hers, too. And she did. Within 72 hours of removing gluten and casein, Alder made eye contact for the first time in his life. He was 5. I knew we were onto something but wasn’t sure what to do next.
On a whim I attended the Autism One annual conference in Colorado Springs later that month where I met Dr. Zach Bush and Kathleen DiChiara, FNP. In listening to them speak I found that, in their experiences with patients and clients, bio-individual nutrition played a key role in restoring the body to health. And because we had already seen positive results from the dietary changes we implemented, I knew we needed guidance for specific nutritional recommendations to help restore Alder’s body to health. Kathleen agreed to take Alder on as a client and, through her guidance, we modified his diet to meet his individual needs. Alder slowly got better. He lost his diagnosis in 2016. Alder is currently in 4thgrade in a regular school. He has as lots of friends, plays classical guitar (quite well, actually), practices taekwondo and plans to try out for wrestling this week. He built a motorized snowball launcher (2 of them actually) that connects to a leaf blower and a mini rocket powered by Coca Cola and Mentos (2 things he’s never actually eaten). He writes comic books and is a talented artist. I have no doubt his future is bright. We don’t plan to build a garage apartment any time soon.
There are so many details I left out for the sake of time. And our journey isn’t over. We’re just writing the next chapters as we go. We have setbacks. We have struggles. We’re a little different than other families. Because we’ve adopted a healing mentality as a family and food played a critical role in Alder’s recovery, we maintain strict guidelines for what we will and won’t eat. You don’t want to have us over for dinner. But you can come to my house instead where you’ll likely find me wearing an apron and writing my latest recipe and I will feed you. And even though it’s healthy, you’ll probably like it.
The more I explore and try to make sense of our journey, the more I realize that I never really found Alder. I found a lot of people along the way who helped us, help Alder, find himself.
I want to help other families like mine. I want to use our story to inspire them to rewrite their own stories about health in their families. And I want to guide them down the right path (which is why I’m back in school to become an FNP like Kathleen). I want to be their lifeline like Mary Jane and Scott were mine. I want to give them hope. I want to guide them the way Kathleen and so many others guided us. I want to help them find themselves the way we helped Alder find himself. I never knew why I needed to tell my story. I simply know I must.
Comments
Post a Comment