Wednesday, June 12, 2013
Liane Kupferburg Carter wrote an article at Autism after Sixteen entitled "Seeing Clearly" regarding one sneaky way that stress has affected her physical health; vision damage. This is a big subject in our house--stress and its many manifestations--and our family has long been stressed past our healthy boundaries. The most stressful part of all is letting go of our unrealistic expectations for living the lives we were given and accepting that there are some parts of life we cannot control and loving them for what they are.
And recently, one of my favorite bloggers, Leigh Merriday from Flappiness is... updated her blog post titled "Somebody's Knockin'" regarding the effects of the stress of parenting a special needs child and the depression that lingers in the corner beside it, waiting for an opportunity to reach out a hand and lead us into the darkness.
It inspired me to write this post.
Scratch that; I have needed to get this out for a long time. Leigh Merriday's post inspired me to find the energy and the will to write this post. I knew this had to be said. Out loud.
I need to write this post.
I need to write this post.
Stress, the One-Eyed Demon and his Friend, the Fifty Fingered Darkness...
I used to be smart.
I used to consider myself a woman of utmost competence.
But just now, I typed confidence instead of competence.
I was thinking competence, but I wrote something else.
I deleted that word. Found myself frustrated at my mistake.
A mistake that four years ago, I never would have made. And would have cringed if it was made by someone else.
I used to have a MENSA level IQ. I was gifted, really, and I had the scores to prove it. I considered myself a competent, capable young woman. There was very little I considered off limits to what I could do as long as it was something that was physically in my power. I made a habit of pushing my boundaries regularly and would flourish well in a respectfully competitive environment. I could hold my own.
I never minced my words. Never mispronounced or mispelled a thing. And I cared for the religion of clear speaking enough to help others if they found themselves woefully mispronouncing words. Always used the holiest standards of syntax and grammer. Always doing my duty by scaffolding others when their grammer and syntax showed want because I cared; I really cared enough to be helpful and lead them grammatically through the straight and narrow. I was an English teacher's dream student, a literature master's best friend. Once, I was an editor, an award winning in-house literary journal designer and editor for a community college. I took home editing and literature awards alike at the state level. I was an accomplished speaker. Presenter. Socialite. Student. Worker. Woman.
And then we got the news that we were expecting. It was unexpected, a surprise if you will. (I have always loved the utterly silly use of the word expecting when really for us, it was quite unexpected). A super surprise, as I wasn't expected to be able to have children. In the preceding years, my womb had been ravaged by health issues.
I was doing 21 hours of coursework plus my editorship plus a leadership forum when I was in the process of treating my reproductive issues. It was a couple years after Katrina; the Gulf Coast town I called home was still quite base. In between my busy college schedule, at my job, which thanks to broken infrastructure was an hour and a half from my college, I was seeing my doc for my angry womb. Things were crazy. Hectic. Stressful. Especially since my now-husband and I were a fledgeling couple still trying to navigate some rough waters of our own. And then suddenly, there we were, unexpectedly expecting.
It wasn't really an easy pregnancy. I spent many hours of this pregnancy in tears. I ended up on bedrest. Had two scares. Some placental shearing. Separately, Piggledy and I began seeing therapists to get ourselves ready for the forthcoming responsibiliy of parenthood. That we were expecting was certainly our top priority. We attended classes. We read the books. We did our research. I brushed up on the curriculum of the development courses I had taken, Associates Degree now under my belt. I was confident that this, too, I could master.
Eventually, we found our rhythm, Piggledy and I. Our son was born a couple of months later. He was beautiful, fair and blue-eyed to our darker features. He had ten beautiful fingers and ten lovely little toes. He performed well on his APGAR. We were utterly thrilled. For the next twelve hours, we could do nothing but smile through the fatigue as we caressed our new baby's skin.
Twelve hours later, our peace would disappear. Our son began screaming. Intense, piercing wails that rocked us to our core. I was so exhausted. I had just given birth not twenty four hours before and my epidural hardly worked (scoliosis, anyone?). Piggledy was right there through it all with me. He, too, was exhausted. We tried everything. Eventually, the other babies in the ward were wakened by our screaming, squealing baby and the nurses began popping their heads in to assure themselves that we weren't slowly gutting our newborn son. None offered us anything beyond what we had already tried. "Swaddle him." "Rock him." "Burp him." "Rub his belly." "Try formula with your breastmilk." "Relax, he can feel your tension."
Then she came in. We thought at first she would be Nurse Save-a-Mom and that she was coming to help. By this time, several hours of crying, we expected someone would spare a shred of humanity and step in to guide us through. I laid in bed, my baby crooked under my arm while I rubbed him and patted him expectantly, and I looked up at her with imploring eyes. I saw her mouth open and I clung to every word; her sage wisdom that day: "..Should have known it would be you to give in and spoil your baby."
It rocked me to my soul. Every ounce of confidence I had in my parenting skills bled to my toes and down through the floor at that very moment.
It has never fully returned.
And the crying? It didn't stop either.
We spent two years of utter hell trying to figure out what was wrong with our child. Upon bringing him home, he screamed wickedly all through the night. We brought him to his doctor who said "gas!" And sent him home. At six weeks old, he screamed one night for ten unrelenting, torturous hours. By this time, he'd vomited at almost every feeding. "GERD!" she swore. His sleep schedule was awry; we were lucky to get three hours of sleep a night, barely functioning at home and on the peripherals at our jobs (once I left maternity leave). "Bad parenting!" She claimed. At nine months, a new phenomemon of parasomnial awakenings began that threatened to wreck what little sanity we had remaining; he would wake screaming like someone was repeatedly stabbing him. Each episode would last for up to an hour and it wasn't uncommon to have as many as six episodes in a night. I would sit on the floor, wait till my baby was conscious enough to touch (for when he wasn't, he would not recognize us and he would kick and thrash), then rock him with tears in my eyes and my body shaking with adrenaline and fear. My baby is hurting and I feel so helpless, I would think. "Bad jobs!" the doc exclaimed. We were living in a recession period in a town hit by several disasters including Katrina and the BP oil spill. Our choice was either to quit work and draw government assistance or keep working despite that we both were in the service industry, working until ten PM some nights. We wanted more for our son. While I did quit work (but continued in college), we found no reprieve from our son's symptoms. At around ten months, I remember thinking...there is something definitely wrong with this picture. I tried to put my finger on it. I told close family and friends about my concerns and of what I thought we were seeing. I think I know what this is...but then I was chastised by everyone. How dare you judge your child that way! Love him unconditionally for who he is; don't be that mom who compares her kids! The thought that I could be not loving my child right quickly shut me up. They made us feel like incompetent, overprotective, unloving parents.
At one year, we figured out that his "baby bowel movements" were not normalizing either, evolving instead turning into malodorous, wet, constant explosions. We kept thinking to ourselves, this can't be right, it can't be healthy. My baby is hurting and we are helpless to stop it! "LACTOSE INTOLERANCE!" the doc prescribed. "Give baby less milk!" We tried to tell her the Lactaid wasn't working and nor was switching to soy. She told us that our son's bowel movements were his version of normal. Normal.
By this time we had slept maybe a total of 20 hours a week for a year. The pediatrician was sick of seeing us, sick of our "ignorance." (Have I ever mentioned that I have a MENSA level IQ and that my husband, too, is brilliant, or that my college core was human development....with a pronounced emphasis on the critical first years of a child's life?)
Why didn't we change health providers? Well, I wasn't working for one. We didn't have enough money to start over. We were barely making ends meet as it was. And even if we did have the money to start over, our confidence in ourselves as parents was utterly shot.
It took us until my son was two and a half to start getting answers.
I saw it there on the internet one night. While working on an assignment for school. On a You-Tube video of a child who looked, jabbered, and played just like my son.
With severe gastic disturbances including ulcers (which we now know for a fact have caused him pain all those screaming nights). Casein intolerance. Peanut allergy. Asthma. Hay fever allergies. Night terrors. Sensory processing difficulties. Delayed development. Dysgraphia. Hypotonic muscles/difficulty with long walks.
Autism. Like I suspected so early on. When out of love for my child, my worries were hushed by everyone else.
He is now a couple of months shy of five years old.
My memory is only a fraction as effective as it once was. My recall mechanisms are pretty-well shot, I have difficulty transferring information from my short- to long-term memory. I have lost a profound amount of my once vast vocabulary. I struggle sometimes to make coherent thoughts. I stutter sometimes because words and thoughts just leave me in mid-speaking. My ability to multi-task has diminished significantly.
I feel lucky somedays to still be verbal, even if I am not nearly so effective anymore.
I lose everything. Everything.
I often forget dates, important tasks, and things that people tell me.
I am lucky to remember to brush my hair somedays.
I feel rather silly when I try to have conversations somedays. In fact, I think I'd go so far as to say I feel stupid. Very stupid. Incapable. Incompetent. A shell of my former self.
I have several health problems. I spend more time than I'd like being sick or feeling unwell enough to function as I need to in order to be an effective person. I feel awkward in social situations sometimes, more awkward in work situations on those days when I am lower functioning.
I had gone back to work after graduating college only to realize that a career may be a dream I never realize. We live in constant fear of our son falling into his bad sleeping patterns (ala overstimulation); when he does fall into those patterns, it's like PTSD to think relive the fear that they will worsen. Our son is still not BM potty trained. We are ever vigilant that our son not see bad behaviors from other children. We filter everything for him instead so that when he does see bad behaviors he does not see them as something to emulate, but rather something he is informed about as being inappropriate.
Parenting is important to us. Although I never recovered my feelings of being as capable as I once felt, my husband and I have at least learned that we are effective right now. We practice Conscious Discipline (Dr. Becky Bailey). Everything is a lesson. Every moment is a learning moment. Every moment is a moment for us as parents to learn how to be better models for our son.
Which is why I needed to write this post.
I had to own the stress and its presence.
I had to acknowledge the Darkness so that I recognize it when it appears. I had to own the new person I am so I can be the best parent for my son and best wife I can be.
It hits me sometimes. Very, very hard. Sometimes, when I have seen my son off to school, I go back to sleep. Sleep until I pick him up. Sleep for hours. Because the only thing that gets me out of bed is making sure he is well-cared for. Sometimes, I struggle to be social, even with my own friends and family I know who love me because I just don't have the energy it takes to think about what to say anymore and because I feel like I have nothing worthy to say. My life is consumed by parenting. I don't have cool news about my job. My son's school schedule keeps me from making true community committments that might be fodder for conversation. I don't always have the effort to wear anything but my pajamas from the night before, riddled with hair from my kitty who likes to sleep in the crook of my arm when I am down. No make-up on my bad skin. Hair a mess. I look like I might look like a crack-head. Actually, if I were to be more accurate, like a methamphetamine user. My eczema and psoriasis has worsened under the stress. I am spotty with zits and blackheads from head to toe. I just turned thirty but have Bride of Frankenstein gray streaks peppering my hair. I naturally have a gap in my teeth so when I'm unkept, I just look like someone scary. And then I open my mouth and the words don't come like they used to.
And the Darkness will be present.
And sometimes, I have clarity and perspective and I feel just fine. Like today.
It is now taking me two and a half weeks to write this post.
Because it is emotional for me.
It is painful. Cathartic. Happy. Sad.
Because I need to be okay with taking baby steps.
I don't hate my life and I don't hate autism. And despite being disillusioned by what stress has done to me, I don't hate my life and am not bitter.
Actually, I feel blessed beyond what I could write. I love my son. I love everything about him. He is actually quite happy and well-adjusted. Autism has brought my family closer together, despite the stress. My husband and I are a team. Best friends. On the same page. Not to say we don't have our moments, but we have had to get our priorities straight early on with our son's needs and so we don't waste our energies on pettier things. And I like my life per se', and would be quite okay if stress didn't actually affect us this strongly. And knowing that feeling vulnerable to stress has made us more vulnerable to Dark days.
I know that the Darkness is a product of stress, not my son's autism. My son could have been born a million other ways and it would still be stressful. He could have been born with Cystic Fibrosis (a diagnosis I have always feared), could be blind, could have Down Syndrome, could have a metabolic disorder, could have juvenile diabetes, could have a rare disorder that could kill him before age ten and there still would be stress. And although parenting a child in a world not made for my child is stressful, so is a world not made for individuals with addictions, with depression, with Fibromyalgia, with Lupus, etc. My son could have had any of those diagnoses and the stress would still be with us. He could never have been born at all and I could have this stress.
I know that allowing the Darkness to take over helps no one, least of all my son.
So I write this post.
Last year I made a set of New Years Resolutions, including mostly ways to de-stress ranging from forcing myself to do things that I don't feel I have the energy for, to painting my toenails again, to feeling less guilt when I do take time for myself and most importantly, including to go back to writing, once an avid passion of mine. Something I could be good at. I told myself, I would write a blog without stress, without feeling like a failure, thus is born, Higgle-E-Piggledy, the first-draft rantings of an autism mommy. Proofread if I have time. If I want to. If I feel like it. And not feel bad about my grammar. About incomplete sentences. About misplaced modifiers and dangling participles. Because this isn't about what I don't do the way I used to. This is about getting it out and talking about it. Sharing. Connecting. Even if it's imperfect.
It's about finding myself now and loving me regardless.
Taking steps to get there. Baby steps.
Letting the world know so I can be held accountable to reestablishing my person and so the world can, too. So they can understand the journey.
So I can be the best person, parent, wife, daughter, friend I can be. Even if it means I'm not the best student, speaker, writer, woman, presenter, socialite.
Because even if I'm not who I used to be, I'm worthy.
And my son and my husband deserve to know that they are worthy, too.