Papi Bear and I are from different countries. I’m American and he’s South American. We have much in common, but our upbringings were very different and our views on childrearing often butt heads when it comes to topics such as discipline and Little Bear’s autism treatment.
Papi Bear accepts the diagnosis when we’re with the therapists and doctors. He is more eager to say his response to speech is severely deficient than I am. He is less likely to explain symptoms away than I am. He is the one who really pushed for the neuro consult to begin with. For all who see Little Bear in a clinical setting, Papi Bear is the one who accepts this reality most firmly.
Me? I accept the reality of my son having autism. I can now say it without crying. I can go to his appointments without having a panic attack when they say “autistic” and point out his deficits. I am, however, his primary caregiver and I do see differences between where he was when we started a month ago and where he is today. I also see differences between how he is when we’re alone, how he is with both parents, how he is with his brother, and how he is with therapists. He may be babbling nonstop all morning with me, but when he’s being evaluated or working in therapy, maybe one or two words will come out. He is also much more verbal with me than he is with my husband. When I lay in bed with him, he’ll touch every part of my face and whisper, “nariz…. nose…. ojos… eyes…boca… mouth,” and then wait for me to lay on my stomach and then he’ll climb on my back and fall asleep. I know a different Little Bear than the rest of the world.
Today my husband arrived home from a weekend trip to his country. We were discussing Little Bear’s progress over the past few days. He said he definitely agrees with me that Little Bear does better in the morning than he does in the afternoon/evening and that he is understanding more directions and commands. He was also very impressed that he walked across the entire house to bring him an empty apple sauce pouch and say, “Gracias,” when he gave it to him.
We discussed where we see deficits the most. I told him I see some social deficits for sure and also some minor sensory ones. He asked what I meant. I told him I notice that when he leaves his very-dark room after nap and walks into the living room, which is very bright, he will sometimes put his arm above his eyes for a few minutes until his eyes adjust to the difference in light. I also mentioned our recent trip to Tusker House at Disney World for a character meal. Both of the boys were tired, Teddy was just recovering from roseola, and the combined stress of not being 100% with high noise levels and lots of people was just too much for him to take. He freaked out and wouldn’t eat a thing. It was a very stressful experience for all of us and he pretty much had to eat in our arms in the buffet area because he would cry every time we were in the room with the noise and people.
I told my husband I had asked some moms of autistic children what they do when they go to Disney and their kids have sensory overload. One woman said, “My son wears noise-cancelling headphones and has the added bonus that he can listen to the same song over and over without bothering the people around him.” I thought that was a wonderful idea and so did all of my friends who work with autistic children or have one of their own.
My husband’s response was, “No. That’s a horrible idea. He has to learn how to deal with it. He’s not going to wear noise-cancelling headphones when he’s 20.”
To which I responded, “Maybe he will. We don’t know. When he’s 20, he’ll most likely have other coping mechanisms. For now, he’s 2 and he doesn’t know how to cope with the world around him. I want him to be comfortable in public.”
Husband doubled down. “No. He is not going to wear headphones. Just because you read something on the internet doesn’t mean it’s a good idea. We don’t even know if he’s autistic yet. They’re still testing. It still might be something else. But no matter what, we need him to learn how to be as normal as possible. He needs to figure out how to deal with it. He’s not wearing headphones ever.”
At that point I said, “But that’s the point. He’s NOT normal. He needs accommodations because he’s NOT normal. He’s autistic. And he’s two years old. He doesn’t know any other way of coping at this age. He is not normal and we can’t treat him like he is to the detriment of his mental health.”
And that’s when I left the room and silently cried alone. My son is autistic and he is disabled. He needs accommodations that make him comfortable. Would we deny a paraplegic child a wheelchair in an attempt to have him appear normal? Would we deny a deaf child a seeing eye dog in an effort to appear normal? A hard of hearing child a hearing aid? A nearsighted child glasses? Our child is no different. His father needs to understand his disability and realize that this isn’t a small learning disability that can be overcome with extra tutoring or no time limits for tests. It is something he will deal with the for rest of his life. I refuse to make my child suffer anxiety and mental anguish in the name of appearing “normal.” Besides, we’re in 2016. It’s pretty normal to wear headphones at all times in public anyway. Nobody would know he was using it as a coping mechanism. They’d just assume he’s listening to the Wiggles.