A boy in Jesse’s class invited him to a birthday party recently. I bought a gift and marked the time/date on my phone calendar. The day of the party we arrived to find a few of his classmates in attendance, which I silently felt relieved that we would know at least a couple of the other party guests. Jesse immediately ran to a girl in his class, who is Hispanic. Like him, she is also autistic with low verbal skills. I had never met her parents before since she rides the bus. Other parents who pick up their children after school usually congregate outside the building under an awning. After almost a year, I became acquainted with a few of them.
I walked up to introduce myself to the girl’s parents and was surprised that they knew very little English. In fact, the mother could say maybe five words in English, leaving her husband to do most of the interpreting which was shaky at best. All I could think about was how this couple must have a hundred questions related to their daughter’s school. I could not imagine how lonely it must feel to live in a foreign country, not knowing the language, while navigating/advocating their child’s special needs education!
We attempted a couple of times to talk but the few Spanish classes I had in high school and college completely evaporated from my brain. Knowing how to count to 20 in Spanish or recite the months of the year was not very helpful in the moment. I wanted to communicate with the mother and by the expression on her face I think she did too. She showed me a picture of their other child and I smiled back. We were reduced to facial expressions and pictures. My heart hurt for her and their family.
Then it occurred to me that Jesse might feel isolated in a similar way. I have wanted so desperately to communicate with him that it is easy to forget how he must feel too. A book I just read from an autistic boy’s perspective called The Reason I Jump by Naoki Higashida gave me a little more insight and sympathy on this. At thirteen, Naoki transcribed in Q&A form using an alphabet grid with the help of his mother and teacher. The book was later translated into English and has become a national bestseller. I definitely don’t agree with his New Age beliefs sprinkled throughout the pages but the core idea I took away from reading it was that we sometimes limit those who aren’t just like us. Whether it is a language barrier, intellectual, or physical, we often view them as less than the rest of us. Instead of learning what life is like in someone else’s shoes we are quick to treat the disabled or disadvantaged with less respect than someone we can relate to.
I still do this on occasion to Jesse when I struggle to communicate with him or when he can’t calm down or because bath/bedtime makes him super hyper and giggly. The underlying fact is, when I don’t understand his speech or behavior I’m tempted to give up because we aren’t speaking the same language. It can be exhausting and frustrating. Yet I wonder how many times people with Autism or any other barrier are quickly dismissed because the ability to communicate easily is absent. We assume that there isn’t another way or that the case is hopeless. Reading this book gave me a different perspective, and for the first time, hope. Just because Jesse can’t speak in complete sentences like other children his age doesn’t mean he lacks intelligence or is less of a person. Naoki says,
“One of the biggest misunderstandings you have about us is your belief that our feelings aren’t us subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or meltdown.” (p. 109)
I imagine it might be like someone in a coma who can’t respond verbally or physically but can hear everything going on around him perfectly. His senses are a little thrown off, but mentally the coma patient can comprehend his auditory surroundings. Often doctors, relatives, and visitors talk over the patient as if he isn’t even there.
I’m learning to slow down and intentionally communicate with Jesse – mostly to understand him but also to treat him like I would anyone else without a disability. He’s only six so there will still be wisdom needed (and grace) for training and discipline because I often don’t know exactly what his level of comprehension is. But I don’t want to limit his abilities either. Sometimes that means pushing him a little, to gain confidence. Other moments are more grace-filled and tender, realizing he doesn’t have that specific skill-set yet. But it’s a start in the right direction. Conversation can happen in many forms, not just verbally. For us it looks like a smattering of sign language, spelling words out, hand gestures, pictures and one to two word phrases. We get by. And I am learning that I can’t put him in a box, because he always surprises me by refusing to stay in the mold that society has placed on him.
Grace upon grace,