My Humanity

I used to be a self-centered, self-indulged, pampered princess. I blindly went through my days seeking out people who stroked my ego and things I found exclusively pleasing. Although I wasn’t the deliberately malicious type, I often found myself involved in shallow judgment and frivolous gossip. The girl I used to be has since been replaced with a giving, patient, educated, and nurturing spirit. Now, as the mother of an autistic child, there is no room for selfish endeavors or insensitivity of any kind.

            My son, Ryan, was born six weeks premature after a long and complicated pregnancy. Plagued with pre-term labor, heart palpitations, and in the end, pre-eclampsia, it is amazing he made it at all. It took some time for Ryan and me to bond, as we were separated for the week following his birth so I could get well. I remember seeing him for the first time in the NICU, hooked up to monitors, an IV in his tiny arm. His heel was raw, as he received several pokes for the blood needed to check his bilirubin levels. I put my hand through the arm hole of the incubator, laying it on his tiny belly. I fell in love with him in that moment, crying and praying that God would keep him healthy and safe for all of his days.

            Ryan was diagnosed with autism after a harrowing kindergarten year. There wasn’t a day that went by where he didn’t cry or wish to come home from school. He displayed several OCD behaviors, like washing his hands over and over, and flicking the lights on and off. Because he was my first child, these behaviors didn’t register as alarming. It never occurred to me that lining up blocks instead of stacking them was a symptom of anything. The thing that led me to seek help for Ryan was his obvious sensory dysfunction.

            During practice fire drills at school, Ryan became overly stressed at the sound of the alarm, causing him to wet and soil himself. The principal felt this was fairly common amongst kids his age, and tried to ease my concerns. However, my concerns grew one night after taking him to a high school basketball game where he screamed and flapped his hands against his ears at the sound of the buzzer. We took him home immediately, knowing something was very wrong.

            It didn’t take the child psychologist long to ask, “Have you ever heard of Asperger’s Syndrome?” Her question led us to many books, articles, and a Psychiatrist. The doctor recognized Ryan’s condition immediately, finally giving a name to the behaviors that didn’t make sense. Now that I knew what I was dealing with, I embarked on the daunting task of parenting my son.

            As Ryan’s mom, my day usually begins when he wanders into my bedroom and announces the time. Ryan, like most autistic kids, put themselves and everyone in their sphere on a strict schedule. “Mom, its seven-thirty,” he prods. Of course, being woken up in this manner, I am annoyed. As it must, patience wins out and I stumble out of bed.

            Because Ryan is also bipolar, he is often severely manic in the morning and talks incessantly. Sometimes it seems as though he forgets to breathe. I put my hand over his heart and ask him to take a few deep breaths. This is something I began doing as a way to focus and calm him. It doesn’t always work, but it gives him a short reprieve from the madness.

            When we’ve completed his breathing exercises, I embark on the hated ritual of dispensing medication. This is an especially trying time for me. I remember, before becoming parents, my husband and I would discuss medicating children and how we vowed that we would never become “those” parents. Needless to say, every morning I take a bitter bite of humble pie. Ryan is on several medications, which come in different forms. I prepare his liquids in a cup and add a bit of apple juice to try and mask the horrible taste. In a small bowl, I crush two pink tablets, and then combine the powder with tiny peach beads from a capsule. I add vanilla yogurt to the mixture and hope I haven’t measured out more than two bites. Ryan will only take two bites; he does not break this routine. How this daily event goes lies most heavily on my son. Some mornings, it is smooth sailing, while other times he runs around the kitchen making siren noises and eventually ends up hiding under the kitchen table.

            There is always dramatic potential when it comes to getting dressed. Ryan has severe sensory integrated dysfunction. This is a fancy way to say that he is very particular in the things he wears, eats, touches, and smells. It is my job to make sure all shirts are tag free, pants have the “right” fit, socks are the same brand (Adidas) he’s worn since he was three, and shoes are a little too big. Making sure these variables are in place assures at least one harmonious task.

            Because Ryan has significant manual dexterity issues, eating breakfast is a tremendous undertaking. Like most children, he loves cereal. This poses a problem as he is clumsy with his spoon and usually ends up wearing half of his breakfast. I try to remind him to use a paper towel to catch the milk droplets and falling cereal, however, he hates the texture of it and won’t follow my suggestion. During most meals, he gets frustrated trying to manipulate eating utensils and usually gives up, resorting to using his fingers. Although I know this is a Miss Manners nightmare, I don’t feel it is productive to add more stress on an already high stress situation. I’ve learned to choose my battles cautiously.

            When it comes to brushing his teeth and manipulating the tooth paste tube, Ryan is no professional! I send him in to the bathroom to complete this mission and fret about what disaster I will find afterward. What I usually find are blobs of tooth paste clumped in the sink, smeared on the counter, and clogging the end of the tube. Instead of shouting at him or becoming enraged, I give him Clorox Wipes to take care of the mess. This way, he doesn’t feel bad about himself for not being neat, but independent for being responsible for his own mess.

            Before heading off to school, Ryan makes sure he checks the school lunch menu and decides on the choices given. Since he has displacement issues, he will not take lunch to school. In his mind, food made at home belongs at home and food prepared at school is strictly for school lunch. Despite costing $40 per month, I understand how Ryan’s mind processes this information and make adjustments in our household budget to accommodate the charge.

            If everything goes well, I will not get a phone call from Ryan’s teacher or the school principal. When I do answer one of these calls, they usually tell me that he is having a hard day and can’t seem to cope in his overwhelming sensory and social surroundings. On these difficult days, I exercise one of two options. The first is to visit him at school and see if I can get him to verbalize his frustration. For the most part, addressing the origin of his anxiety and talking it through works wonders. My last resort is to take him home and let him unwind. The most important thing for Ryan is that he has options.

            Before picking my son up from school, I make sure dinner is planned and in the beginning stages of preparation. Ryan has a strict routine when he comes home from school and an early dinner is one of the components, along with riding his bike eighteen times to the end of the street and back, and drawing parallel lines in the driveway with sidewalk chalk. The lines represent order in his world.

            Bedtime also holds a rigid routine. After dinner, I dispense his evening medication and then it’s off to bed. Because his dad works third shift and naps in the evening, Ryan crawls into dad’s bed and snuggles until he falls asleep. Yes, this means I’m never alone, even in slumber. When it’s my time for hunkering down, I take advantage of Ryan’s stillness and calm. I rub his head (something he doesn’t allow me to do during his waking hours), kiss his cheek, and wrap him in love. I know most people have issues with children sleeping in their parent’s bed, but I am not one of them. For Ryan, my bed is a safe haven where he can let his guard down and feel at peace. I could never begrudge him this retreat.

            Although I constantly feel overwhelmed and overworked, I parent Ryan willingly. I don’t find the need to blame God for his disability, or wring my hands with worry. I don’t feel guilty that I did something to cause his autism and I don’t make him feel that he is autism. I take each day and live it with him: laughing when he laughs, crying when he’s sad or hurt, and rejoicing in small victories. Most of all, I am proud of who I’ve become in the storm of Ryan’s autism.