Until Rebecca was four we believed that she would never communicate with us.
We'd figured out that she was smart in some areas - for example she laughed at the
jokes in The Muppet Show, had a distinct preference for Caramel Dairy Food and grizzled
when she was thirsty so we'd got past the 'experts' theory that girls with
Rett Syndrome are vegetables. But we didn't think she would be able to read and
I think that some professionals have made a leap in logic - nothing coming out ...
therefore nothing going in and nothing going around. I liken Rebecca to a PC with no
printer or screen for feedback - but she certainly had the keyboard and the cpu!
Then I went to a conference in Auckland and heard Missie Morton from
Syracuse University talking about Facilitated Communication (FC).
I asked about Rett Syndrome and couldn't believe it when she said they were working
with people with RS. I went straight home and told Rebecca about Missie, and that I knew
she understood every word I said - Rebecca didn't stop smiling for days!
The problem was that no-one in Auckland knew anything about FC. I found out that
Rosemary Crossley lived in Melbourne, what to do what to do ... then I remembered the
telephone and just rang her up one day! Amazingly she was there and I got to talk to her.
Rosie gave some advice over the phone, like keeping up the reading with Rebecca etc.
and talked about some strategies for FC and augmented communication and we carried on like
that for some weeks. The phone bill was staggering.
New problem - I didn't feel confident enough of the techniques and my reading of
Rebecca's responses to be sure I was identifying the best methods for her, or 'enabling'
her properly. We needed to get Rebecca to Rosie's clinic, The Deal Communication Centre in
At that time DEAL's funding prevented them from taking referrals from out of Victoria
State, but you know how obnoxiously pushy some of these mothers are! We enrolled on a Deal
Education Course, said we'd like to work with Rebecca on the course and Rosie came up with
the brilliant idea of using Rebecca as the course practical assessment component! Bingo!
The assessment was really cool ... Rosie tried a myriad of methods with Rebecca to find
her most comfortable and reliable way of communicating, including:
|eye pointing with a variety of media, plastic fruits, the same fruits printed on cards,
Rosie wanted to find out whether Rebecca could recognise the objects from pictures or if
she needed the object itself (Rebecca was OK with pictures)|
|eye pointing with pictures at the corners of a large square clear plastic board to see
what range of eye movement Rebecca had|
|an electronic yes/no switch, facilitating Rebecca by stabilising her elbow and asking
questions, like are you a little girl? what is growing on your head - is it grass? is it
fur? is it hair?|
|we tried a device like a clock thing that had a hand that travelled around at different
speeds to see how quickly and accurately Rebecca could stop it when the clock hand was in
a certain quarter|
|we tried lots of different switches - hand operated, chin operated, etc.|
My clearest recollection is that it was really fun - Rosie found lots of interesting
things to look at, like characters from Sesame Street, and asked amusing questions.
Rosie found that Rebecca was really good at nose pointing to one of two alternatives.
We had actually discovered this for ourselves some time previously while reading books
to Rebecca and asking questions like 'which page has got the clown on it?' and Rebecca
nose pointing correctly, but because we 'knew' Rebecca would never have any cognitive
skills we thought we were just mad parents seeing what we wanted to see!! It took a
professional telling us to make us accept that we were right.
Moral of this tale - parent's have excellent instincts and should follow them to the
Anyway, the last thing we tried was a head pointer with Rebecca sitting unsupported on
the floor and Rosie holding out two cards with words on them.
One set of cards said "cow" and "car".
|which one says cow - Rebecca pointed to "cow"|
|which one says car - Rebecca pointed to "car"|
|which one says moo - Rebecca pointed to "cow"|
|which one has milk - Rebecca pointed to "cow"|
|which one would you ride in - Rebecca pointed to "car"|
Plus similar questions with other cards. It told us that Rebecca could not only read
single words and short phrases (and maybe more complex text - we didn't evaluate this),
but could comprehend and had good ideas of what things were and what they did.
During the course of the assessment, which was spread over three days, Rosie asked lots
of questions, Rebecca didn't answer a few, but every one she did answer was correct.
There was no-one holding or steadying Rebecca - she did it on her own. She also did
some head-pointing independently sitting in her wheelchair.
Gerry and I don't know how Rebecca learned to read. There are a few possible
|we read to her|
|she was mainstreamed at a child care centre which had good quality programmes|
|she attended our local school and followed the same curriculum as the other students
with reading practice homework every night (we read aloud and pointed to the words while
|on TV and all around there is ambient print to learn from - e.g. the yoghurt pot has
'yoghurt' written on it and you wave it around saying 'would you like some yoghurt?' (in
the early days a rhetorical question - please excuse the pun).|
Apparently lots of kids learn to read before they go to school.
Rebecca worked really hard for Rosie. Rebecca had a chest infection and was probably
feeling lousy, but she worked and worked until her face perspired with the effort. We
could tell that Rebecca really liked Rosie and I think it was because Rosie approached
Rebecca as a perfectly intelligent person with interests, likes, dislikes, a sense of
humour, who just needed something to help her communicate.
Rosie says that not saying anything isn't the same as having nothing to say.
We came home and started looking for a head pointer for her. Rosie said that it could
take about 18 months to get accurate with a head pointer so that Rebecca could start
spelling out words off an alphabet card. We tried two types (it took forever to access
them and then they were no good, falling off etc.) and had ordered from Australia the one
that Rebecca had used successfully at Deal - another few months ticked by.
In the meantime Rebecca starting using yes/no written on a DL envelope. She could do a
lot of stuff with yes/no. Order off restaurant menus, decide which direction to go in on
her walks, choose what to have for breakfast, choose who to invite to her birthday party,
which book to read etc. Her friends at school used to use the card too - I don't know what
they talked about.
Rebecca died before we received a usable head-pointer.
Claire Wackrow said that the best thing about
having Rebecca for a friend was that she never told Claire's secrets.