news

Mamamia Cares: Every child deserves to be heard.

Jai
This is Jai. He was born with Rubinstein-Taybi syndrome.

By JULIETTE FRANCOIS

“I like it” he said – three simple words that nearly blew me away. It was dinner time and I was hurrying to get a meal on the table for my husband Neville and my three children: seven-year-old Jai, three-year-old Amelia and one-year-old Isaac.  I had just sat down when I heard those words coming from the iPad – “I like it”.  Jai was enjoying his dinner and for the first time in his life he was telling us about it.   Neville and I couldn’t’ believe it.  We were ecstatic.

Jai has Rubinstein-Taybi syndrome (RTS), a rare condition caused by a genetic mutation that results in intellectual disability, poor fine and gross motor skills and a high risk of leukemia and lymphoma.  Speech is one of the major areas that is affected in children with RTS and whilst some children do grow up to be verbal although it is often indistinct, others will never learn to speak. We won’t know until Jai is an adult if he is one of the lucky ones or not. Jai once said “mum” and it was one of the happiest days of my life but now he has regressed and the only word we can properly understand is “cake”, one of his favourite foods.

It’s painful when you can’t communicate with your child. Neville and I are always worrying that we are not doing enough to help him. It is so evident that he has so much he wants to say and to see his frustration at not being able to articulate is devastating.  As a family we have spent a long time teaching Jai to learn hand signs until we realised his fine motor skills weren’t strong enough for him to make himself clearly understood. Then I started looking into picture communication but to be honest it was all so overwhelming.  I couldn’t imagine Jai having to carry around hundreds to pictures in order to have available what he was wanting to communicate at any one time.  The idea of Jai being able to ‘speak’ was beginning to seem more and more difficult. That was until I heard a lady talking about her 19-year-old daughter with Down’s syndrome who talks with an app on her iPod Touch and I realised that Jai’s future could be equally bright.

ADVERTISEMENT
words
A Week Without Words.

Jai goes to St Lucy’s School for children with disabilities where 95% of students have communication difficulties due to conditions like dyspraxia, autism or cognitive delay.  Thanks to St Lucy’s Jai’s progress on the iPad has been amazing– he can now flip through four pages of words to find what he needs to say which has changed life for us all.  Finally Jai has a voice.

To support its work the Sydney school  is running a campaign called ‘Week Without Words’ during September that asks people to stand in the shoes of children who struggle to speak by getting sponsored to give up talking for an hour, half  day, 24 hours or even more. Some people are holding charades nights or Pictionary parties and school students across Sydney are learning to hand sign.

The money raised through Week Without Words will fund speech therapy scholarships for children whose parents can’t afford to pay for sessions themselves. It will also train parents to help their kids at home and pay for a program to address behavioural problems linked to the frustration of not being able to speak.

You can find out more about the campaign by going to Week Without Words or sign up as a fundraiser at here

FROM OUR NETWORK
00:00 / ???