DISCLAIMER: To date, this is the most difficult article for the blog that I have written. It has taken me a few weeks to get it fully written and published. Mostly this is because it involves a subject so close to my spirit, my autistic son. I have purposely left both of my children's names out to protect their privacy. I also did not do a final edit as I could not read the entry one more time! Publishing this article is part of my own journey to fully accept my life as the mother of an autistic child so that I can be the best mother for him possible. Since I'm giving you my heart, I'm trusting you'll forgive any typos....
Although it is difficult to tell sometimes in the Pacific Northwest, summer has arrived. While we are currently despairing the lack of sun and warmth, the days are longer, my "rustic" yard is full of flowers, and despite the lack of summer sun, a lot of folks are preparing to go on vacation, perhaps seeking warmth and the absence of rain elsewhere. It is a time of transition, even when Mother Nature refuses to transition with us.
Likewise, we are transitioning in our family. Between March and June we celebrate all four birthdays in our little family, Mother's Day, Memorial Day, Father's Day and several other birthdays in our immediate family. We go at a a rapid clip for several weekends and then suddenly the summer is upon us.
Equally significant are the transitions each child made at the end of this school year. My amazing daughter completed her first year in a sweet and gentle Waldorf program exactly one block away from our home, two days a week. She "graduated" and next year will return for three days a week. This is a relief as well as an anxiety to me. While I am deeply connected to my girl, her her infinite imagination and inherited gift of gab can be exhausting. Yes, if you know me, you are literally laughing at loud at this moment. Our Little Bit is at least the third in the line of women who could talk all night and still not be finished. I once found a letter from my mother to her mother, written before we moved to West Virginia. In it my mother described me by saying "She talks incessantly". I can only imagine the kick my grandmother must have gotten from reading that letter, as anyone who knew my mother knows she could talk your ear off, and then talk the other one off! I love listening to my daughter's stories, explanations, and concerns but the child needs a wider audience!
My amazing son finished kindergarten at the EEU not long ago. The Experimental Educational Unit, located on the campus of the University of Washington, is a fantasic environment for both developmentally challenged children as well as the typically developing. The Boy falls into the former category having been diagnosed with Asperger's Syndrome at the age of four. Asperger's Syndrome is considered by most a type of autism that is characterized by difficulties interpreting social cues, understanding the pragmatic use of language and in The Boy's case, accompanied by an array of sensory issues that evolve as he matures.
While I mark my son's diagnosis as a time I will never forget, there was never a moment where I was surprised by it. Relieved, confirmed, affirmed, saddened, retreating, these words describe the emotional places I reside on my own continuum of acceptance and denial as I live into raising a child on the Autism spectrum. But dear ones, I was never surprised.
When The Boy was born, I fell in love immediately upon seeing him and within the first hours of meeting him I was certain that he was experiencing the world differently than the average newborn child. Everything seemed difficult for him, but it was all readily explained away by the deluge of professionals in and out of the room over the days we stayed in the hospital while I "recovered" from a scheduled C-section. From fussiness to poor latching the first days with my new baby were stressful, exhausting, and anxiety producing. I loved him and celebrated his arrival and simultaneously knew inside that all was not well with my boy. We have a picture of him as a newborn...a close-up...it is the picture that I recall when I remember this time. His little face is worried, anxious, pinched...and while it is true that infants do adopt that expression from time to time, my son looked that way most of the time, even asleep he often did not look like he was actually relaxed and peaceful.
Jokes in the room about him looking like a little old man with his wide-eyed worried expressions did not relieve my concerns. I had the gift of, early on in my life, of being the girl who everyone wanted to babysit for their children. At one point, I was so in demand, that my friend Linda Knight Jerrnigan, would schedule me a year in advance for New Year's Eve before anyone else called me! I loved children, they were eaiser for me to be with than my peers and I could read them without any problem. More importantly, they loved my back, unconditionally. Even in my young adulthood, I seemed to always have friends with children all ages and was accustomed to being the the default aunty. Simarilarly, I worked in vocations where children and youth were being served. By the time motherhood was miraculously looming, I had received all the vicarious edcuation that I could consume without pushing the biological clock any further.
So when I watched my own sweet boy, I was filled with a loving and a connection that I now understand is part of being a mother. This knowledge informed my awareness of my son and I could see that he was struggling with input from the new and wide world around him. His reactions to external stimuli continued to be ones of surprise, fear, shock well after we left the hospital. He startled so easily. Other people around the two of us would find the reactions cute, amusing and this angered me. How could they not see that he was distressed? I could not understand or appreciate at the time that my understanding of my son was directily related to being his mother. It is my gift to him that, having carried him in my body, our cells comingling for that period of gestation, I am forever connected to him in a way that he will never be able to reciprocate. I know when the world is impedeing on his comfort level and when it is too much. Six years later I completely trust my sense of him, even if no one else can see what I see, when I see it; even if they they think I'm crazy. I will admit, I might even look a little crazy when I'm advocating for this boy and I can accept that too! I believe now it is part of being that mama bear for your child to be a little crazy when your child needs you and I know for certain it is part of the mother's job when her child has any kind of "special need". Our children are depending on that unique tenacity we have as mothers when they need us as advocates.
But dear ones, there was one area where this mother completely missed the boat with her best intentions and I am slightly embarrassed to admit that it was in the realm of food consumption! This is hard for any mother to accept, food preparation being a natural expression of our love and devotion for so many of us. Yoiu can imagine then how difficult it was for a self-edcuated foodie who wanted to give her firstborn child the perfect beginnings and was delusional enough to think she could! The Boy, after a difficult stint for both of us with nursing, ate very well. His diet was full of only organic, homemade, whole grain foods. Nothing processed touched his pallete, in fact, he didn't even have candy until he went to kindergarten! He loved eating and delighted his mama with his consumption of lentils, hummus, tofu, whole wheat pastas, breads, and cereals.
As he got older, our son continued to have strong reactions to external stimuli that would otherwise, generally be considered child-friendly, although some of that I still think is debatable (think "Dora" screaming instructions at you with her wide-eyed, oversized head, she fills me with anxiety!). I learned to see the world through my boy's eyes and ward off as much intrusion as possible. Transitions were next to impossible, as were playdates with new people who didn't understand. Although he was showing clear signs of intelligence, communication seemed hopeless and he overwhelmed easily with the frustration of not being understood. In those years, our world became very small.
By the time he was two, I had my hands full with Little Bit on the way. My son was tantruming at the drop of a hat, didn't talk to us in a typical way, seemed unaware of most people until they were too loud or invasive in some other way. I was scared. This was more than the "terrible twos". My heart was telling me I I had a child on the spectrum, in some way, but I was unwilling to articulate that to anyone save his pediatrician and one very dear trusted friend who I knew would not judge us or the behaviors. Her unconditional love and acceptance as well as her stint in pediatrics while studying to be a physical therapist were tremendous gifts to this lonely and scared mother.
Now God works in mysterious ways, generally slipping things in the back door and making me think I'm doing one thing when He's actually preparing me for something thankfully and mercifully unknown to me. After I moved to Seattle, I made some major changes in my diet. Having been diagnosed with IBS since my young adulthood, I learned that dairy products can often agitate the condition. Removing dairy from my diet led to an exploration of vegetarianism that resulted in five years of meat-free eating for me with two years spent as a vegan.
As a result, I never introduced dairy in The Boy's diet. It is commen for both Asians and African-Americans to be lactose intolerant. With both of these ethnic groups represented in his gene pool, and two aunties who ordered soymilk in their lattes, I felt it better to withold dairy from the beginning, knowing that we could introduce it later if he were not allergic. Thank God for that insight. Children on the Autism spectrum often have difficulty processing products with dairy, while lactose is not necessarily the troubling ingredient the prevalent protein casein is particularly troublesome. One theory suggests that the neurological breakdown in the autisic individual causes a disconnect between the brain and the stomach. This disconnect results in the digestive system's inablilty to properly deal with certain ingredients and casein is one of these ingredients.
Somewhere in the vast amount of research I did on food and diet, when I had time to do that kind of thing, I happened upon a blog so lovely that I had to stop and read it. I was happily surprised to see that it was written by a local woman, who lived in a neighborhood adjacent to ours. Shauna James Ahern, author of "Gluten-Free Girl" has written and photographed a blog so aesthetically pleasing that I recommend it to anyone who loves to read about food and loves good writing. Her writing is outstanding and moves me each time I indulge in it. Shauna shares her struggles with illness prior to be diagnosed with celiac's disease, a seriuos illness where the intestines cannot deal with the persavive ingredient gluten, found in most breads, pastas and cereals as well as hidden in unsuspecting places. Reading about her discomofort and her experience led me to other blogs and other research which revealed that many autistics have difficulty with gluten as a result of the neurological disconnects in the brain.
I pulled every bit of gluten from my son's diet immediately. Still without articulating that I thought he was autistic, but desperate for some relief in our home, now occuppied by two children, I didn't really require an explanation. Dear ones, the result was a miracle. Within twenty-four hours my son came down for breakfast and said "Good morning" to his parents for the first time. Honestly, I didn't even know he was aware of the phrase, but had been saying it to him all along. After a few experiments re-introducing the gluten, it was clear. Gluten and/or wheat had been making my poor boy so uncomfortable that he had been too miserable to even communicate properly with us. Although he was still exhibiting intolerance in his behavior to transitions and certain stimuli, the ability for him to communicate with us about it had increased dramatically.
We eventually had him tested for Ceiliac's and thank God it came up negative. The child has enough to deal with already. His inablity for his stomach to properly digest gluten is not life threatining so we don't have the added complications cross-contamination. Small, trace amounts of gluten do not effect him. In removing the gluten from his diet, I also reduced the amount of gluten I was consuming, by default and came to notice an immediate relief in some of ,my IBS sypmptoms that had been plaguing me for years. We are now almost completely gluten-free in our house.
As a result of removing gluten, my culinary skills have been challenged in some curious ways. I was delighted when I finally found a recipe for peanut butter cookies that was gluten-free, ridculously easy, and so yummy. You may recall from earlier writings that my cooking expertise does not include a flair for baking, so the simplicity of this recipe is quite welcome! It's a family favorite and I'm sure Little Bit will be able to cook them on her own before long. When I master something like that and see the delight on my son's face as he waits for them to cool, I can forgive myself for not knowing earlier that the food I thought was good for him was the food that made him so uncomfortable for a year and a half. We are so blessed to have learned this early on and I am so thankful that my son did not needlessly struggle for several years like so many people do before they find out...Thanks be to God....more will be revealed.....
Gluten-Free Peanut Butter Cookies
(I have adapted this gloriously simple recipe from Simply...Gluten Free. It is so good and simple that my Aunt Peggy makes them for my Uncle Jim from time to time. Neither of them are gluten-free, but my Uncle has a wicked sweet tooth and Peggy says she can whip these up at the same time that she cooks dinner. I hope you'll make your way over to this lovely blog and see the pictures of another sweet boy, who also happens tobe autistic, as he makes this cookies. The beautiful expression on his face says it all!)
1 cup of peanut butter (the type, brand does not seem to matter)
1 cup of sugar (ditto)
1 egg (we use a nice happy egg from a happy chicken that ate Flax Seed since the kidlets don't eat meat)
combine ingredients, roll into little balls and make the fork indentations, bake at 350 degrees for NO MORE THAN 10 minutes. It is easy to overbake these cookies because when you take them out you'll swear they are not yet done. Do not be tempted! Overcooking results in the typical, dry, crumbly gluten-free cookie we all are used to. Cook them for 8-10 minutes, let them cool for five minutes or more. The result will be a cookie that no one will no is gluten-free, they'll just know it's yummy! Enjoy!
