I’m screaming inside, itching to scream out loud despite the knowledge that it would do no good, could hurt the “animals” and would be viewed by the zoo keepers with bemusement.
At the same time, I’m experiencing something of a revelation. I think I’ve had a glimpse into the reality of living with autism. Whatever anyone tells you, if you are not autistic, you. do. not. understand. autism. Don’t kid yourself, Mum, you may love your child more than you could ever have imagined; you may know what will or will not trigger a meltdown; you may have really good strategies for helping him or her through a bad time; you may even have learned why he or she reacts the way he or she does to certain things. That is not understanding autism. It’s managing it and trying to act as translator to your wonderful, beautiful child.
Trouble is, you’re translating a language you don’t speak. You’re gonna get it wrong. Often. A lot. If you’re lucky, the love between you and your child, and your patience will make things work. Hopefully work well.
Tonight I took Sweet Girl swimming. A little background: she swims beautifully – I mean it, her body is stunning to watch in the water. She also has NO confidence and is terrified of being out of her depth. Not worried, anxious. TERRIFIED. To the point that she will sink because she loses the ability to function – no treading water, no movement at all. Last Easter, due to her obvious ability, she moved to the deep end group. Despite the teacher’s patience and kindness she simply wasn’t ready for it. After 6 lessons or so she was a wreck and wouldn’t even get in the water. She moved back to her beloved teacher Angelfish. It’s taken six months for her to regain the confidence she had this time last year. She has not come close to being the swimmer she was at Easter.
Tonight, with no warning, she had a new teacher.
Tonight, with no warning, she was put out of her depth.
She spoke… gods I’m proud of her! She told the teacher how anxious she was about having a new teacher, about being in the deep. This little girl, who finds it so hard to talk of her feelings and fears articulated them in clear, simple terms. She was told those fears were “silly”. Now, I know this lady did not know her, but my daughter needed to be heard, to be understood. And she used the language we have taught her to use – words. She did not squeal, or cry, or pull her hair, or run away. She. used. words.
She did everything right.
And STILL!!! STILL! she was lost in translation.
She did so well, but at the end simply could not carry on. She came out of the pool shaking, crying, so, so scared. And apologised to me!!!!!
“Don’t you dare apologise, sweet Girl, you did NOTHING wrong!!!”
I do not speak Sweet Girl’s language. Even the most basic of language, touch, is slightly off kilter and mysterious. But I love her, and I trust her, and I know that she feels that and loves and trusts me in return.
I do not speak Eldest’s language either. It’s a very similar language to Sweet Girl’s, though his vocabulary is rather different to hers. Again, love, patience and trust have allowed us to ride out many storms.
That love, patience and trust have taught me a lot about these two amazing people, though. I’m fairly confident that I know them better than anyone else, and that my understanding of the outside world puts me in the best position to act as their translator while they figure out this strange language that other people use to navigate through life.
I knew that Zack needed “baby/Mummy” time when he was six years old. I took the plunge, brought him home and we did just that. Holding each other, faces a few inches apart. He’d never been able to do that until then, and I was open enough to realise when he reached that stage of his emotional development.
I knew that Tom was different, ill, before he was even born (strange one, that but there it is). His diagnosis of leukaemia was a phenomenal, devastating shock, but it was no surprise. I can’t explain that at all, but it doesn’t change the fact. Nor does it change the fact that in that sentence I’ve lost half of you readers. Kook, mad hippy woman, deluded, you’re thinking. I’ve lost you in translation. Because words are poor. For all the richness of human language, words simply do not do justice to the breadth of human experience.
I knew that Kesia was baffled by other children long before anyone else recognised it (oh, except for kindred spirit Tayberry who saw it too… she also must translate her children for the world, and the world for her children). I tried so hard to speak what I knew, what I saw to the psychologists who were trying to help her. They saw a child traumatised by her circumstances. So did I, but I saw more than that. And with what I knew and what I saw, I spoke out.
“Please listen to me, I know her. I see her darkest fears overwhelm her, I see how she works to speak the language of other children but never quite manages to find the rhythm. Please listen to my words and hold them with you when you listen to hers. Please. Listen.”
I feel that I may be at some strange crossroads… I have words, vocabulary, education to mould them. I have empathy, understanding of others – I can get inside your shoes within minutes of meeting you (it’s a double edged sword of a tendency, and I’ve had to work hard to keep my distance in order to keep myself healthy and “sane”). I know that miracles take work and time and patience, and often pain.
Oh, and did I mention, I’ve the education to allow me that expression that I yearn for. I know that I can formulate an argument in a clear (sometimes concise) way, and that I can turn a phrase to offer both logic rationale and emotive expression.
But somehow, my message isn’t getting through!
It’s getting lost in translation.
And I’m left wondering…
“What language are you speaking? Why can you not understand mine?”
And I’m left thinking…
“Sweet Girl, Eldest… is this how you feel every day, every night? Do you fight to find the right words, the right actions, only to be left with a string of words that made sense to you but clearly do not to others?”