This breakfast is 8 years in the making…A2 eats a total of 9 different foods..all presented in a certain way…all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can…
My beautiful boy wandered into my room tonight. His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose. He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king. I can’t say I hate it when that happens. He is warm and cuddly and doesn’t thrash and kick like he used to when he was little. To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why. As he gets older, he seems no worse for the wear for it either. The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed. He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.
The thing is, my husband and I never wake up fully refreshed. There are Things That Keep Me Up at Night. Who will hug him when we are gone? Who else will find his sweet smile so endearing even at 3:00am? We try to be optimistic about his future. A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is. We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future. Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him. I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can. We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services will help house him, feed him, care for him. We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears. So we plan as best we can knowing surely, there will be some kind of services for him.
But tonight there is no sleep because now I am not so sure. I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb. My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults. I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”? What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult? There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.
The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle. Perhaps I truly believed all that because I see the innocence in his eyes. He is a pure soul who has helped me see good first and maybe I can spread that message for him.
So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you. While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby. But don’t worry….A2 won’t judge you. He is forgiving and will love you anyway.
Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..
Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.
A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…
These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.
Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home. I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view. But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.
So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. #onepulse
Your brother saw the ocean for the first time about a month before we knew you. The expanse stopped him in his tracks leaving him silent and still. The moment you were born 11 years ago today you cried and screamed and when they held you up for me to see I instinctively whispered your name. You stopped crying, found my eyes and you were silent and still and you took my breath away. Your presence in our lives has been like seeing the ocean for the first time–beautiful and tumultuous and every day is like seeing the world in a way no one else gets to. I feel lucky I get to be your mom. Happy Birthday sweet A2…….
97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…
“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…
In the month of our 15 year anniversary, I can confidently say we have embarked on a journey neither of us could have expected.
In some ways I wonder if our trek is easier than others since we never had musings of what our unborn children would be like or what kind of parents we would be.
…or if we would be parents at all….
I believe in a judicious balance between predestination and free will. Sort of like walking into a movie complex. You can pick the movie you will see, but once you choose it, the plot and ending remain the same. It is up to you if you decide to leave the theater to get popcorn or simply decide that movie is not for you and you should have never listened to Siskel and Ebert’s reviews to begin with.
All marriages require a gentle balance between cohesiveness and independence….and especially with families like ours. Stress is a constant, sleep deprivation a given, and child rearing? Well, throw out everything you ever thought you knew about that. Not everyone can do that. Usually, the stronger is left holding the bag on their own. I know too many families like that and watch in awe as the parent left behind carries the weight of her world.
Through thick and thin we give each other the space we need, recognizing we are in for the long haul. Our children are who they are supposed to be. We make the same mistakes as every other parent in every other union, but with the knowledge we must be united as forever parents, even long after we are gone. And for that, perhaps we are luckier than most.
This breakfast is 8 years in the making. A2 eats a total of 9 different foods..all presented in a certain way.–all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can last a lifetime. So-the next time you are out to dinner and see a mom letting her kid eat Poptarts or a huge mound of fries for dinner–she may not be spoiling her kiddo….that dinner may also be 8 years in the making.
F is for Food…Part 2….Behind the kitchen door
There was this moment when my then preschool aged child and infant and I were sitting at the dinner table. I had my plate of one protein, one complex carb and leafy greens, napkin unfurled neatly in my lap, fork down after every bite. My prescribed Xanax appetizer was working as I sat there all June Cleaver-like smiling, asking about finger-paint and sandbox filled days, modeling healthy eating, modeling appropriate mealtime behavior…like I tried to every single day with little to no success. Dinner was cuisine and varied every night but there were 3 different dinner plates on the table. A1 wasn’t growing well and complained every mealtime that his stomach hurt. It would take him about 1/2 hour to eat even 50% of his meal but a big part of this was because he could not stay seated , would play with his shoes or get up to get a toy.
“Where are you going?”
“Did you have fun with your friends at school?”
“4 more bites.”
” You love buttery noodles, remember?”
“Don’t lick your shoes.”
“The timer hasn’t gone off yet.”
“I love this picture you made, tell me more about it.”
While this was going on, A2 sat strapped in to his high chair at the table with mounds of “power packed” foods. Macaroni and Cheese made with extra cheese, heavy cream and special calorie powder stirred in, crackers, whole milk with carnation instant breakfast. I was taking him to the doctor every several days for weigh ins because he was not growing or gaining weight with any normalcy. His Help Me Grow case worker taught me how to increase his calories…something that his dietician did not show me…or even suggest. He was eating about 1000 calories a day which was about the same amount I was eating to maintain pudgy and yet he still he would only gain ounces over the course of a few weeks. It made no sense. Most evenings he would sit in front of his food and not initiate eating so between my own bites I would a cajole him into letting me stick a Mickey Mouse spoon between his lips. He chewed funny. It did not look like he enjoyed eating, but generally he never fought it. But not this night. He turned his head from me and giggled at A1 who was now slowly sliding out of his chair, disappearing under the table. A2’s last weigh in he had dropped 4 ounces but we had no idea why. (Maybe I needed to put more of that Nestle Additions stuff in his milk? Should I switch to Boost? I think that has more calories. I wish he liked doughnuts!). In that moment, I experienced PXF (Parental Xanax Failure) and June Cleaver went bye bye. The underlying and increasing anxiety I was having at mealtime that caused me to medicate so I remained calm and cheery sprang to the surface and yelled “Ta da!!! Here I am everyone!!” I snapped at A1 to sit in his chair immediately and accused him of distracting his brother to the point of not eating….and his stomach is fine….so finish that spaghetti and garlic bread! I got out an assortment of spoons hoping A2 would pick one he liked better. He did not. As he sat thrashing his head from side to side and mooshing his lips together to avoid any possibility of the airplane making an emergency landing in his mouth I began bawling and begging him to eat like some bad drama actress from the 1940s. Meanwhile, A1 got up from the table to poop. What the hell was I doing wrong? Kids just eat, right?
About a year later, I dusted off that MOTHER OF THE YEAR trophy I earned that day and dropped it in the trash. A1 started losing weight and his pediatrician started taking his constant loose stools seriously. He had an elevated EMA (antibody test that is specific to gluten…as in that stuff found in spaghetti and garlic bread). After a week of no gluten he had his first normal looking poop of his life and soon after no more complaints at mealtime. A2 phased out all solid food before he turned 2 but was increasing the amount of Pediasure he drank. Within the month of being on a self-induced liquid only diet, he started sleeping much, much longer stretches, started walking and got consonant sounds. Sure, he projectile vomited 3 times a day but he seemed much happier. His head never spun around even once so we were fairly sure we were not going to have to call for an exorcism. To save money we switched to the a big box, El-Cheapo version of Pediasure. What we saved in monthly bills, we spent in clean up costs and therapy bills for A1 because the vomiting seemed to increase–as did his target range. And like fine wine connoisseurs, my husband and I decided the bouquet of El-Cheapo vomit was not as pleasant as Pediasure vomit. A1 and his hypersensitive sensory system were traumatized. (see exhibit A)
Through deductive reasoning, I concluded that El-Cheapo brand was making it worse, we switched back and he improved. A few years later he improved even more when an integrative medicine doctor suggested he couldn’t digest dairy and thought he should be on a “pre-digested” prescription version of the same thing. “Oh…no. We had him tested, he’s not allergic to dairy…and our GI said its probably just a mito thing”. But sure enough within a few weeks of switching again, A2 stopped vomiting. Completely. And he was willing to play with and then even taste a few foods.
There is nothing more instinctual to a mother than nourishing her child. Our species would not survive if this were not the case. When your child has feeding issues it is normal to doubt your instincts, to question what you are doing wrong, how you are messing this up. Have I had to drop a few $20s into the therapy jar for later due to my own reactions? Sure. I am human and I find there has been almost nothing more unnerving than my child not eating or feeling sick when they eat but no one can tell me why. And when someone finally figures something out and they get better to start questioning EVERYTHING. Make sure you are being honest with yourself. Are you trying the best you can? Are you revisiting eating with your child? Are you trying to create a more relaxed environment at mealtimes? Can you, especially as a woman in this society put your own food issues aside? Pat yourself on the back if you can answer “yes” to those questions because your child will continue to thrive because of you. Breathe….and most importantly, enjoy your meal.