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.