“Are you lost or incomplete? Do you feel like a puzzle, you can’t find your missing piece? Tell me how you feel. Well, I feel like they’re talking in a language I don’t speak. And they’re talking it to me.” - ’Talk’ by Coldplay
I love Coldplay. When I first heard the song ‘Talk’ I felt they had written it for Bas and me. It’s a conversation I’ve had (one-sided of course) with him since he was probably three years old. I wanted him to know that I would always be there for him to make sure he had whatever he needed – that if he felt like something was missing I would help him find it. The funny thing is, the parts others found missing in Bas, I never saw.
I go through life living it, being in it, just like everyone else. It’s a great life, and I find it surreal at times to say I have no real complaints. At times I actually feel a bit guilty because I think to myself how very lucky I am to have the family I do, especially my kids. In the past I would feel a slight twinge of guilt because I was sure others were looking at me in envy of my fabulous kids – just wishing theirs were half as cool as mine! I have never paid much attention to other people (not in a rude way, but I’m usually otherwise occupied), and once my kids came along my acknowledgement of others lessened exponentially. But that was why people were staring, wasn’t it? Envy?
Love truly is blind, and I think a Mother’s love takes it a step further.
Eyes Wide Open
Merriam-Webster defines communication as a process by which information is exchanged between individuals through a common system of symbols, signs, or behavior.
It never occurred to me that not being able to speak was a sad thing, or a bad thing. That people saw my son’s lack of speech as a disability – and they felt sorry for him. Even worse, they felt sorry for me! These Moms weren’t staring at me in envy, they were staring at me and thanking their lucky stars that they weren’t me. That their kids were ok! I was blind to the fact that these women saw me as a ‘getting by.’ Or as ‘surviving as the parent of a child with a disability’ (I’ve heard this phrase before and thankfully can’t relate – and I breathe my sigh of relief). My love and hope for my kids, all three of them, and my faith in them as human beings blinded me to the thoughts of others. And that oblivion, my friends, is compounded by the gift of autism. My autistic brain never understood what other Moms meant when they said things like:
“I don’t know how you do it.”
How I do what? You see being nonverbal is the way Bas was born, but he has always communicated – just not with words. I have seen the way people look at Bas and me when we’re together. They hug their kids a little tighter, and if I look closely enough, I swear I can see them sigh in relief. That last part may be my imagination, but I don’t think I’m too far off the mark. And I didn’t fully get it until I read a quote from actress Kate Winslet, founder of the Golden Hat Foundation (www.goldenhatfoundation.org). She said that her daughter asked:
“What if I wasn’t able to tell you I love you, mummy?”
I was confounded by that question, because the answer was so easy. I felt like raising my hand and saying,”Oh, I know. Pick me! Pick me!” Because my very simple answer would be that you would have to show me. No big deal, it gets the point across. And that’s what it’s all about, right? Communication. Information exchange between individuals.
I have never wondered if Bas loves me. Ever. He looks at me and I know. And I know because he doesn’t look at anyone else that way. But that innocent question, “What if I wasn’t able to tell you I love you, mummy?” spoke volumes to me. I always thought when people commended me on my ‘strength’ and applauded me raising my son(???), that they were being nice. Like they were telling me ‘Good Job, Mom!’ not in a sympathetic way, but more conversationally, you know, like you would say to any Mom: “Your kids are wonderful, what a great job you’re doing!”
When I read Ms. Winslet’s words – those of her daughter – it opened my eyes a little wider. These Moms actually meant what they were saying to me.
I am so very glad she shared the exchange she had with her daughter, it’s important. It helps me see what non-autistic people see when they look at us together. I’m not in the least bit offended at how they feel. They feel this way because they don’t know. They sigh in relief and count their blessings because they are imagining how they might feel if their child couldn’t speak (if their child was autistic). But they can’t really do that because it’s not the same. These Moms are imagining a part of their child being taken away and I will agree, that is scary. But you see Bas never lost his speech, because he never had it.
Bas has communicated since the beginning with his eyes, his hands, his body and his emotions. He is learning to use language and it’s difficult for him. If you met us on the street and spoke to him, you would not understand a word he said back to you – I could translate, though. And this gets me thinking even more…
I saw an interesting bumper sticker the other day and it made me stop and think. It said: “Just because I am unable to speak does not mean I have nothing to say.”
Wow, I never thought of it that way. Not that someone who can’t talk has nothing to say but that some people are under the impression that someone who can’t speak has nothing to say. Don’t tell Stephen Hawking that, I feel confident he’ll disagree, and I know Bas would!
Can You Miss Something You Never Had?
Bas has never shown sadness, frustration or anger at not being able to talk. He’s a seriously happy kid. Does he get aggravated when people don’t understand him? Well, yeah, but don’t you? We don’t emphasize or focus on Bas’s lack of speech. We talk to him (just like we do our other two kids) and he’s in an awesome school where they work on different forms of communication daily.
But my goal in life is not that my son will be a great conversationalist or even speak in complete sentences. I really hope he does because he’s working for it. But he might not. Either way, Bas is understood in so many ways: His gestures and body language; through some verbal exchanges; and with gentle touches and pressure point squeezes; and with assistive technology like the iPad; and, my favorite, with kisses and smiles. He will get what he wants; What he needs. Because without a word Bas, in his very own way, has perfected:
The Art Of Communication