Thank you to the Matilda Rose Centre

Now Jacob has started 'big' school we're discontinuing many of the services that have provided Jacob with the much needed early intervention for his various conditions.

Jacob seems to have taken this change in his stride. He has shown us he's very ready to move on and begin this exciting new chapter in his life. He wants to be a 'grown up' school boy and be as much like his peers as possible. He's doing great!

I, on the other hand, have struggled with what I can only describe as a bitter sweet change in my life. Whilst I am elated that Jacob is revelling in his new school life I have found it devastating to leave some of the most amazing therapists/friends that I've come to know over the last few years. I have worked intensively WITH these people, learning so much more than I could have ever anticipated whilst attending our weekly sessions.

It's been the most incredible roller-coaster ride! One that of course I would rather have not been on...who wants their child to have a disability?! BUT as I had to choose a ride to get on I am so pleased I chose this one.

Now it stops.

Life changes and we ALL have to move on.

Time to get on another ride.

One of the centres where Jacob has received intensive therapy for several years - including speech, OT, physio - has been at the RIDBC-Matilda Rose Centre.

In June 2011 the Matilda Rose Centre became part of the Royal Institute for Deaf and Blind Children. There was a 'grand opening' to mark this change. Jacob and I were asked to attend this opening. I was given the opportunity to make a speech enabling me to tell people what this wondrous centre has done for us as a family and of course for Jacob.

Here is a modified version of the speech I gave.

NSW State Premier, Barry O'Farrell accepting a piece of art 'Creating a World of Possibilities' by Jacob Carroll

Jacob and his identical twin brother Samuel were born in January 2006 following a very complicated pregnancy. Samuel, was fairly sick when he was born but made a rapid recovery. Jacob on the other hand was extremely sick. Some of the medical conditions he endured were heart failure, acute odema, respiratory failure and acute anaemia - resulting in two blood transfusions. As one doctor put it he ‘was at the jaws of death’ for several days which felt like an eternity to my husband, Brendan and
I. However, during those first few weeks we came to know our sons and learnt just how courageous, determined and resilient they both are.

Although Jacob had the roughest start to life he made a miraculous recovery. His fight for life did however leave him with a few battle scars. Before being released from hospital Jacob failed the newborn hearing screening test. Further testing told us Jacob was bilaterally profoundly deaf, with a complex type of hearing loss and it was unlikely he would ever hear. At 12 months old Jacob was also given a diagnosis of ataxic cerebral palsy, which affects balance, co-ordination and depth perception. It was found that the whole of Jacob’s body is affected by this condition.

Being told that your child has a disability is simply overwhelming. The most important thing to
Brendan and I was how we were going to help Jacob have a fully enriched life, assisting him to reach his full potential but most importantly to be happy.

Extensive testing told us that Jacob was not hearing with even the most powerful hearing aid.
Communicating with Jacob via sign language was not an option as his gross and fine motor skills were greatly challenged by the cerebral palsy. The next step was therefore to consider a cochlear implant and so we met with the renowned Professor Bill Gibson at the Sydney Cochlear Implant Centre, SCIC.

Jacob received his first cochlear implant at 22months and his second implant four months after that. The implants were switched on and then came the intensive but rewarding work of teaching Jacob how to listen and talk. Fortunately I wasn’t left alone with this overwhelming task! The SCIC’s very skilled rehabilitation specialists began the necessary listening and communication therapy with Jacob but they also noted the additional physical needs he had made it extremely challenging for him. They
therefore referred us to another centre where they specialised in helping children who primarily have a hearing loss but additional disabilities also. This was the Matilda Rose Early Intervention Centre which was founded by the SCIC and the Carnegie Foundation in 2001.

Jacob began at this centre aged 2.5years and from our very first visit to the centre I knew how fortunate we were. The centres vision had seen them develop a specialised program to meet the educational, social, communication and emotional needs of the children who attended. But their philosophy was so much more and totally unique.

It was to provide an individualised program for each child from the time of their diagnosis.

It was to ensure each child was provided with a specialised learning environment to enable ALL their needs to be met.

It was to acknowledge the need to integrate ALL children into extended families and communities as ALL children, regardless of their ability, are our future.

I am sincerely grateful to the RIDBC for continuing the vision and philosophy of the Sydney Cochlear Implant Centre and the Carnegie Foundation and for continuing the outstanding success of this very special team.

The program that has been designed for Jacob sees him visiting the centre twice a week. Once for a group session and once for an individual session.

On a Tuesday morning Jacob joins four other children to take part in a group therapy session. Each term the therapists have chosen a theme to work on with the children. They teach in a detailed and unique way in order for the children to fully understand and learn. The staff have taken the time to find each individual child’s motivation and take into consideration all of their needs – hearing, physical, cognitive and sensory. As parents the best thing is knowing our children are having an absolute ball!

Jacob’s individual sessions are on a Friday morning with his therapist Caren. It didn’t take long for Jacob to get to know and fall in love with Caren. She is the most fun, playful, energetic, creative, loving and caring person. In Jacob’s very first session with Caren she introduced him to someone who has become an integral part of Jacob’s therapy and possibly the biggest motivator for Jacob I’ve seen to date, ‘Hank the Dog’. This new motivation has been an inspiration and I've never know Jacob progress so quickly with his speech and listening skills.

Lastly I want to say a few words about something that I believe is very unique to this centre. It is the holistic approach the staff have with every family who has a child attending the centre. My own experience of this is how helpful, caring and supportive all the staff have been when one of Jacob’s younger brothers was recently diagnosed with autism and ADHD.

I end by saying this, the encouragement, dedication, energy, vision and positive attitudes of all the staff here at the RIDBC-Matilda Rose Centre are ensuring that Jacob and other children are achieving their maximum potential. We as parents have also benefitted from the help of this remarkable team and each week leave the centre feeling empowered and inspired.

Together we are helping these children to be very happy and are creating a world of possibilities for them – simply because we believe in them.


From the bottom of my heart - thank you.

Kat, Jacob, Caren and Hank the Dog enjoying the book 'The Shark in the Park' in one of Jacob's therapy sessions