In honor of Autism Awareness Month we invited our readers to share their stories with us. We are sharing the stories throughout the month of April. Today’s story is from Emma.
My son just turned five. When he was born he was a pretty typical baby, though some things were obviously slow to develop – walking, talking, even teeth coming in, all seemed to lag. The baby books, the sleep books, the parenting books that I so firmly believed in philosophically seemed to have little impact on this headstrong little guy. I wondered why parenting felt so hard, as I rocked my infant in my sling. Was it just extended postpartum depression? Was it that I truly wasn’t cut out for motherhood? Why did I feel so bitter? It was different, more difficult, and since I’m a pretty strong person I knew I wasn’t just wimping out.
By the time he was two we started to talk more explicitly about his delays, and we were comfortable with him being different. I did some research and started to feel scared about autism. At the time Asperger’s was still commonly used and diagnosed so I kept saying to myself, “maybe it’s just Asperger’s, not full-blown autism.” I was so scared of what I labeled in my head as “full-blown autism”.
Our son was enrolled in a birth-to-three program once he was evaluated for his general delays and we began discussing an official diagnosis for autism. He was a generally happy kid, but needed explicit instruction and practice to go down a slide, to play with toys, to respond to questions without repeating the question back. He would echo, he would stare off into space, you couldn’t get his attention. He seemed distractible but at the same time if you got him in front of the movie “Cars” you couldn’t pull him away. He was diagnosed with “full-blown autism”.
It is hard to be his mom. This kid will yell at me from the upstairs bathroom while he’s on the toilet as if his life is in danger, and I will discover that yet again, it’s just because the towels are not in the right order on the rack and he can’t reach them from the toilet seat. He will freak out if there is a different flavor of jam for his sandwich, he might throw a fit if there are no worms in the garden today, he will change his mind about what he wants for lunch and be furious when you brought him the new choice instead of his original choice, because… whatever. So, yes, parenting this child is in fact more difficult; it’s not my imagination. That’s been the good part about his diagnosis. I can stay a little calmer and know that there’s a reason behind his behavior even if I still don’t totally understand the reason. I myself have less tantrums these days!
He has actually developed excellent verbal skills and while he does suffer from some intense anxiety, our little guy has just recently started being able to communicate more comfortably in his preschool classroom with his favorite friends and teachers. At home he makes jokes, he mixes Spanish and English, both spoken in our home, in funny ways and laughs about his combinations. My son pretends with his dolls, cars, playdough and other toys spontaneously. He goes to soccer class with typically developing kids. Yes he can be spaced out on the turf, looking at the lights in the digital clock instead of listening to instructions, but his jumping up and down and his intense flapping means he’s super happy out there to be kicking around a ball.
My son will take my hair down at night and pet it and ask for a goodnight hug and kiss. A couple times he has said “I love you” unprompted. Those are very special days and I tear up. He rides his big boy bike like a speed racer, he gives Grandma tickles if she is looking a bit down, he is able to tell us his favorite part of his day at preschool some of the time. He loves to play chase, listen to songs from Frozen or Caspar Babypants, look out the window and report to us what he sees, and he loves loves loves to just be with his mama and papa.
For us our son is pure magic. He loves making people laugh. And for us knowing his diagnosis early has been a huge help, even if I originally didn’t think it wouldn’t matter – I can’t help but think that if I were a little more aware, I would have gone for a diagnosis a lot sooner. Even before he could walk, as an infant, he was flapping his arms, turning the stroller upside down to spin its wheels, and having a hard time adjusting to unexpected behaviors or events.
Now my message to my fellow educators, to fellow parents, and the friends that hang out with us, is that everyone should know about autism even if they think they don’t need to.
No one thinks they need to learn about the brain and neurology and genes and discreet trials and how to teach someone how to pretend, until they need to. Today at school I showed my advisory group the Wendy Chung TED talk about autism partly because it has all this cool genetic information I know they have studied in Biology class, but partly because I just think they should know. One sophomore said later that she is only just now starting to understand parenting as a confusing reality, that parents don’t actually know what they are doing. No, we don’t, but parents of autistic children are getting a ton of education and support, especially in Seattle. We are learning, and it is my joy and responsibility to share what I experience.
If you’d like to submit your story please send it to [email protected].