My 16 year old daughter doesn’t want designer clothes or brand-name devices. She eats everything on her plate, always has. She’s never begged me for new pets, holidays or toys and she’s never had a boyfriend or been to parties or tried tobacco, drugs or alcohol.
The downside is that she also can’t explain symptoms of illness or injury or retell anything that’s happened to her outside my supervision. For that reason alone, I confess I have persevered with unproven methods of communication well beyond my very strong doubt.
Chloe’s genetic disorder, Cri du chat syndrome, has caused her to have multiple disabilities, including the inability to talk. Her brain cannot control her mouth, which also means she can’t chew.
Back in her younger days, I had boundless optimism and very little experience. This perfect mix led me to the doors of Rosemary Crossley at the DEAL Centre in Melbourne.
Rosemary was charismatic, articulate, personable and funny. She appeared to us as something of an Australian grand dame who took no nonsense, boomed instructions and spoke most convincingly about her successes with Facilitated Communication (FC).
As a lead in to FC for Chloe, Rosemary showed me how to hold Chloe’s arm and hand and help her touch pictures in a folder in order to express simple thoughts. I can’t remember what those initial pictures were now, but I think they bore some resemblance to the PECS (Picture Exchange Communication System) cards she currently has in her classroom.
From the very outset, Chloe was extremely reluctant to participate in the FC sessions. She constantly withdrew her arm and looked everywhere but the cards. We took a folder home to practise with and she was intent on crumpling the pages and throwing the cards.
Nonetheless we persevered and received funding for an electronic communication device. The device consisted of a board with buttons representing a simple vocabulary, e.g. eat, drink, play outside, watch TV etc.
We were able to record our voices for each button and change the pictures, in order to tailor-make the device according to Chloe’s particular vocabulary.
The goal was to start with broad concepts and introduce finer ones over time with a view to having Chloe type out her thoughts and wishes on a modified keyboard. I hushed the nagging voices in my head saying, ‘How is she ever going to learn to spell?’
I tried as much as possible to let Chloe push the buttons by herself, as her physical disability didn’t prevent her from doing so, but I was advised that holding her arm and watching her eyes would help her express herself more clearly and quickly.
Chloe was having none of it. She angrily pulled her hand away and pushed the device to the floor whenever she could. I had seen that behaviour before when we used to try to get her to paint or draw by placing her hand around a brush or a pencil. She would instantly relax her grip, but if you persevered, she would grip the instrument then bite down on it viciously before spitting it out.
The consistent message was: Chloe will not be directed and she will not perform. We abandoned FC altogether. Though saddened by the realization that this technique would not help Chloe ‘find her voice’, I was proud of my girl for standing up for herself.
This is also why we are very amused by the well-meaning ‘artwork’ that her schools send home at the end of every term. There is very little of Chloe’s effort in any of the wonderful pictures or collages the put into her schoolbag, but I appreciate their effort to get her to participate.
What did jar me fairly recently, though, was a note that came home from a very young, very new speech pathologist at the school who had met Chloe for the first time. She took it upon herself to send home a note saying, ‘I think Chloe has a lot to say.’ She was asking my permission to allow to Chloe to embark on yet another PECS cards program. Over the years, I allowed the school to use PECS with Chloe, but she made very little progress and we all accepted that.
It was the statement ‘I think she has a lot to say’ that kept running around my mind. The implication was that perhaps if someone did a little more to help her express herself, then we might all be pleasantly surprised. I know that the speech pathologist’s comment came from a good place and a good heart and I respect her optimism, but that statement made me uncomfortable.
I’d like to make this very clear: Chloe is not trapped inside a disabled body. She is our beautiful, funny, humorous, affectionate, profoundly disabled Chloe. She is not a tragic figure and I entertain no mawkish Stephen Hawking fantasies about her or her potential. I know there are other disabled people whose expressive language is well below their receptive language, but Chloe is not amongst them.
Chloe doesn’t care if people stare at her and in fact is quite adept at choosing the best moments to engage in a type of full-throated, open-mouthed shouting that we affectionately call ‘flip-topping’ – after a famous advert for toothbrushes in which a character had a flip-top head that allowed him to clean his back teeth properly. The toothbrush in question was marketed as an alternative to having such a head. When Chloe shouts, she opens her mouth so wide that it almost looks like the character in the advert.
Chloe’s flip-topping is usually reserved for libraries, cinemas, heartfelt speeches and restaurants. We have learned not to be too mortified, but do employ an array of distraction techniques to minimize the sonic damage.
Chloe isn’t aggressive or mean in any way, but her behaviour is like that of a toddler. She will pull off her hat or hood even if it’s raining, she’ll dive into any puddle she passes if not restrained, she would stay underwater for too long in the pool if you let her, she would play with the contents of the cat litter tray if she could find it, she’ll throw vases, plates and glasses off surfaces for the sheer sensory thrill and crawl across the shards if you’re not fast enough. She once even burned her eyelashes on some birthday candles on her cake at school when one of her teachers failed to heed my one great warning: ‘Her arms are longer than you think and she’s faster than you think.’
We don’t normally refer to toddlers as ‘adults trapped in a child’s body’. We have expectations of their learning and growing based on what we know about them and other children.
I have formed similar expectations of Chloe, based on what I know about cri du chat syndrome and her progress over the years. I never thought I’d say this, but I’m pretty certain she has reached her potential. Long, laborious effort will not result in any significant improvement in any of her skills. She will not become less dependent on others.
Chloe likes being warm, fed, comfortable and entertained. After 16 years of trial and error, observation and routine, she and I have basically established what that means. All the PECS cards in the world are not going to make a difference. Hours are spent on teaching Chloe to differentiate “I want my sandwich” from “I want my banana” – but the distinction will not allow her to live without full supervision. And anyway, she basically just wants to eat, because she likes food. Just give her some food. I can guarantee you that will make her happy.
Chloe is a broad brushstrokes kind of girl (though she’ll eat the paintbrush and the paint if you let her). She has no concept of the future or art or literature. She likes music but her preferences aren’t particularly nuanced. She is not interested in animals but is deeply suspicious of birds. I think she must have been flapped at rather distressingly on some outing her respite carers took her on.
She will accrue some additional likes and dislikes on her way and will lose some of her interests. She was once intensely entertained by the clothes dryer. The combination of warmth, noise and spinning gave her hours of entertainment for months. Then one day she refused to give it a second glance and that was that.
I have been accused by some of abandoning hope. I haven’t done anything of the sort. I have high hopes for Chloe. Of course I do. I hope her scoliosis doesn’t progress to the point that her lungs become crushed. I hope she doesn’t get a fatal infection. I hope that when I am no longer able to care for her that she gets to live her life with plenty of heat, food, comfort and entertainment. I hope that she doesn’t suffer abuse from her carers, which I might never really know and have very little control over. I live my entire life in hope.
So the message for people in the field who want to help Chloe ‘find her voice’ is this: she has already spoken. Please try not to spray-paint her with your wishful thinking. Instead, have a conversation with those who know her best and pay attention to her history. I’m not trying to get anyone to abandon hope, but I do recommend embracing reality.