Hannah and Silwia Johnson are at a special camp.
Hannah and Silwia Johnson are at a special camp. Rob Williams

Mum and Hannah keen to develop chat routine

SYLWIA Johnson says the hardest thing about having a child who can't talk is that she's never heard her say "mum".

Nine-year-old Hannah Johnson from Booval is one of 34,000 Australians and 7000 Queenslanders who have cerebral palsy.

People say having cerebral palsy can be like being inside a body you can't fully control.

It affects the way the brain controls the body's muscles resulting in speech, movement and posture difficulties.

But technology and other techniques are always improving to help bridge the communication gap.

This week Sylwia and Hannah, who goes to Ipswich Special School, have been at the Cerebral Palsy League's Camp Have a Chat.

The annual event, now in its 12th year, helps children and young people who have complex communication needs to develop confidence and self-esteem by using new technologies and techniques.

Aged between eight and 18, this year's group travelled to camp headquarters in Redland Bay from Far North Queensland, south-west Queensland, Ipswich, Brisbane and the Gold Coast, to learn to use specialised signs, symbols, gestures and electronic communication devices to enable them to have a chat.

It is Hannah's second time at camp and she was looking forward to trialling an alternate access PODD (Pragmatic Organisation Dynamic Display) communication book.

"She's intelligent; she can hear and understand what we're saying. She's just not able to communicate verbally," Mrs Johnson said.

"She does show her emotions with her eyes and sometimes pointing; making different noises."

She said Hannah not being able to communicate verbally was difficult for both of them.

"Often we're guessing what she needs, especially when she's in pain," she said.

"For her it's also frustrating because the times when she does want to say something and I'm not understanding what she's saying, she gets frustrated.

"I've grown used to it but the first four years was probably the hardest because I was watching other mothers and even the simple things like being able to say, 'Mum'. I haven't been able to hear that.

"Hearing mothers complain because their children were too rowdy, it made it difficult that I wasn't even able to hear those simple things."

But Hannah is clearly full of life and so much like other kids her age in some ways.

"She's very expressive. She lets me know in other ways," Mrs Johnson said.

"If a TV show comes on that she doesn't want to watch, she throws a temper tantrum."

She says Hannah also has a special connection with her five-year-old sister Tashi.

"Tashi will often speak for Hannah; she'll have little conversations; she'll pretend to be Hannah then go back to being herself," she said.

She was looking forward to going to Camp Have a Chat after it went so well last year.

"It was good for both the girls because even Tashi got to play with children who have brothers and sisters who have disabilities," she said.

"They got a sense, I guess, of being part of something.

"They're looking for the best solution for Hannah, because she's not very mobile with her hands. Further down the track they're looking at visual signals where the eyes point to a computer to show what they want."



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