My late 16 year old daughter didn’t want designer clothes or brand-name devices. She ate everything on her plate; always had. She never begged me for new pets, holidays or toys and she never had a boyfriend or went to parties or tried tobacco, drugs or alcohol.
The downside is that she also couldn’t explain symptoms of illness or injury or retell anything that happened to her outside my supervision. For that reason alone, I confess I persevered with unproven methods of communication well beyond my very strong doubt.
Chloe’s genetic disorder, Cri du chat syndrome, caused her to have multiple disabilities, including the inability to talk. Her brain could not control her mouth, which also means she couldn’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 had 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 I used to be very amused by the well-meaning ‘artwork’ that her schools sent home at the end of every term. There was very little of Chloe’s effort in any of the wonderful pictures or collages her teachers put into her schoolbag, but I appreciated their efforts 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 spinning around in 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 was not trapped inside a disabled body. She was our beautiful, funny, humorous, affectionate, profoundly disabled Chloe. She was not a tragic figure and I entertained 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 was not amongst them.
Chloe didn’t care if people stared at her and in fact was quite adept at choosing the best moments to engage in a type of full-throated, open-mouthed shouting that we affectionately called ‘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 shouted, she opened her mouth so wide that it almost looked like the character in the advert.
Chloe’s flip-topping was usually reserved for libraries, cinemas, heartfelt speeches and restaurants. We learned not to be too mortified, but did employ an array of distraction techniques to minimize the sonic damage.
Chloe wassn’t aggressive or mean in any way, but her behaviour was like that of a toddler. She would pull off her hat or hood even if it was raining, she’d dive into any puddle she passed if not restrained, she would stay underwater for too long in the pool if you’d let her, she would play with the contents of the cat litter tray if she could find it, she’d throw vases, plates and glasses off surfaces for the sheer sensory thrill and crawl across the shards if you weren’t quick 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 to all her carers: ‘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 formed similar expectations of Chloe, based on what I knew about cri du chat syndrome and her progress over the years. I never thought I’d say this, but I’m pretty certain she reached her potential. Long, laborious effort would not result in any significant improvement in any of her skills. She would not become less dependent on others.
Chloe liked being warm, fed, comfortable and entertained. After 16 years of trial and error, observation and routine, she and I basically established what that meant. All the PECS cards in the world were not going to make a difference. Hours were spent on teaching Chloe to differentiate “I want my sandwich” from “I want my banana” – but the distinction would not have allowed her to live without full supervision. And anyway, she basically just wanted to eat, because she liked food.
Chloe was a broad brushstrokes kind of girl (though she’d eat the paintbrush and the paint if you let her). She had no concept of the future or art or literature. She liked music but her preferences weren’t particularly nuanced. She was not interested in animals but was deeply suspicious of birds. I think she must have been flapped at rather distressingly on some outing her respite carers took her on.
She accrued some additional likes and dislikes on her way and lost 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 didn’t do anything of the sort. I had high hopes for Chloe. Of course I did. I hoped her scoliosis wouldn’t progress to the point that her lungs became crushed. I hoped she didn’t get a fatal infection (she did, on April 12, 2018). I hoped that when I was no longer able to care for her that she got to live her life with plenty of heat, food, comfort and entertainment. I hoped that she didn’t suffer abuse from her carers, which I might never really have known and had very little control over. I lived my entire life in hope.
So the message for people in the field who want to help the Chloes of this world ‘find their voice’ is this: they have already spoken. Please try not to spray-paint them with your wishful thinking. Instead, have a conversation with those who know them best and pay attention to their history. I’m not trying to get anyone to abandon hope, but I do recommend embracing reality.