I’ve struggled with writing this post for over a week for a multitude of reasons. I don’t want to define the boys by their diagnosis; I don’t want to act like an expert; I don’t want to sound whiny; I don’t want to rattle off a list of symptoms like that expresses how our lives are. There’s just no way to do this gracefully in my head, so here’s a clumsy snapshot of the boys.
Cal is 11 and in the fifth grade. He’s “higher functioning” and has been in a “normal” classroom for a few years. He has some extra help, especially with reading, at school, but for the most part is right in there with everyone else. He’s more routine oriented, there is a way things are supposed to be and that way shouldn’t ever change. He has some sensory issues, he can’t stand hair on his face, doesn’t like brushing his teeth, hates the texture of meat. He will repeat entire conversations to himself, he’s almost always muttering. He does have some tics (self-stimulating activities, usually referred to as stimming), he’ll ball up his fists and sort of shake them near his head, sometimes there’s a grunting noise that accompanies it. He loves Cartoon Network, Mario and Pokemon and will talk to you about all three constantly, no matter your interest level. He will have the tv on, play on his DS and watch YouTube videos on an iPod at the same time. He has some social skill issues, he doesn’t like asking for help, or asking for anything really, not directly. He only wants to play what he wants to play. He interrupts and struggles with humor, especially sarcasm or teasing. He thinks calling me Ms. E-lizzie-beth is the height of comedy. He can learn things really fast when he’s motivated. He takes his role as big brother very seriously. He will still occasionally let me cuddle him. He loves to help me bake.
Charlie is 9 and has 2 inches and 20 lbs on his brother. He’s non-verbal, but makes an incredible amount of noise almost constantly. He hollers, he clicks, he will “sing” and it sounds like whale songs. He doesn’t have words, but that doesn’t stop him from telling us what he wants. He’ll grab your hand and drag you to the refrigerator or bathtub or outside. He’ll bring you a plate or a cup or a card with a picture (these are called PECS). He is a giant mass of energy, he’s nearly always in motion, he wakes up ready to wrestle the day. He has a lot of stims – he flaps his hands, he spins, he taps, the waves his fingers, he jumps. He takes medicine to try and reduce these. He loves water and will happily spend most of the day in the bathtub, splashing and spitting and conducting the music only he can hear. He’s stubborn as all get out but has realized I’m more patient than he is and I almost always get my way. He will hit or bite if he’s very frustrated or in pain. He’ll run away from you at any chance so he rides in the cart when we go shopping. He eats constantly. He wants to be around us all of the time, and unless it’s in the bath or kiddie pool in the back yard, doesn’t really entertain himself. He has the best giggle in the world. He’s a cuddler, he loves hugs and kisses and will crawl into my lap with a blanket before bed and fall asleep on me.
Our days are hectic and exhausting. We spend a lot of money on groceries and the boys are growing faster than I like. I yell more than I’d like, but mostly we laugh. I’m always trying to find new activities for them, most of them aren’t successful – we don’t have long attention spans. We’re slowly making behavior advances, it’s mostly one step forward, two steps back and a couple to the side. Charlie is using utensils pretty regularly. Cal has chores and needs very little prompting to complete them.
Overall, we’re pretty lucky. There are plenty of parents who never get to hug their autistic child; who never hear them say “I love you”; who deal with major meltdowns regularly. The boys are a lot of work, but we don’t have to keep rigid schedules and constantly assess our surroundings to avoid a fit. They don’t have additional health problems like seizures or severe food allergies. We get eye contact, we get laughter, we get touch, we get a little empathy. We get an adventure every single day, filled with giggles and hugs and yelling and food and love and the occasional crying spell. It can be really fucking difficult, but that’s true of any family. For me, every day is worth it and there’s nowhere else I’d rather be.