“How do you know that, baby?”
“He went up front at the balloon thing. They said if you have Autism, come up front, and you took Josiah.”
I smoothed the honey-blonde head on the pillow next to me, and smiled against tears welling up in my eyes. “Yes, baby. Josiah has been diagnosed with Autism.”
I knew I’d take part in a conversation like this someday, but never expected to have such heady and important dialogue with my six-year-old daughter. To my complete amazement, she took everything in and wholly digested it—asking questions like a professional researcher after I explained certain manifestations of Autism.
“Is that why he gets mad when things mess up?”
“Is that why he goes to the Reading Clinic?”
“Is that why he had seizures ‘long time ago?”
“Is that why he has so many teachers?”
“Is that why he doesn’t play toys with me?”
“Is that why he takes medicine?”
“Is that why he doesn’t listen good?”
Esther is two years younger than Josiah, but most everyone we meet mistakes her as the older sibling. This is understandable partly because of her height, (she will grow to be a drop-dead glamazon sooner than I’d like) but mainly for the way she has always looked out for Josiah. It’s not unusual for her to redirect him prior to a meltdown just like a seasoned behavioral therapist, keep a sharp eye out for him on the playground, make sure he has all his belongings and school materials before walking out of the door, or even give him “orders” like, “Josiah, you need to eat your supper first THEN you can have dessert.” To be honest, I find myself relying heavily on her. She’s such a mother hen.
There’s a certain mom-guilt that comes with having a typical child and a special needs child. At least, I’ve found that to be the case. I feel like I’m always playing “catch-up” with Esther to even out the mom-attention. I don’t mean for it to be that way, not at all, but Josiah takes up so much time. I drove Josiah to Nashville twice a week for an entire school year for tutoring. I spend tons of time researching effective methods of instruction. I spend hours compiling all his data for upcoming IEP meetings. I give him more one-on-one tutoring time than I give Esther–and this is all in addition to how Josiah’s needs sometime trump Esther’s.
Josiah is very particular about certain toys. He can share others just fine, but there are some that he refuses to share–Esther thinks this is unfair. Esther has had to settle for what movie Josiah wants to watch so many times that I feel badly for her. I even broke my “no TVs in the bedroom” rule just so Esther could watch her Princess movies. Josiah also doesn’t compromise well. If Esther wants to play tag, and Josiah wants to play hide and seek, they always end up doing what he wants to do. Explaining all of this to her is difficult. I’ve played with her numerous times to make up for the fact that she didn’t get to play with her brother. I know that I’m second best though—playing with your sibling is so much more fun than playing with your mom who gets winded too easily. Keeping a balance of my attention between them is really hard. Am I allowed to say that as a mom? Despite all that I do to keep it even, (hello, hours of cheerleader practice and Saturday morning football games) I’m terrified that in years to come Esther will emotionally vomit up all of her many woes and injustices on some therapists couch.
This is why I cried hopeful tears when the hot-as-hell-hubby showed me a video someone sent him. I was working on my research paper, which coincidentally enough is about using music therapy practices in the general music class to help children with autism, when he poked his head into the bedroom.
“Need some inspiration?”
“You gonna get naked?” I joked. (ok. Maybe I was serious.)
“Naw, for real. You need to see this.” he said and handed me his phone.
I then watched the viral video about the two brothers, one with autism and one without.
I cried. I cried and thought about my Esther and Josiah. I thought about how Esther will most likely always love and look out for her brother, even though it will be frustrating and oftentimes feel unfair. I thought about how Josiah will love her his entire life, and know that she has his back. I thought about how the two of them together have a story that is completely separate from the one that I have with them. I thought about how I can’t wait to read it.
Esther and Josiah compliment each other so beautifully. They’re like two sides of a coin. I have come to realize that I don’t need to worry and stress about keeping any type of balance—they already do.