The decision to move

At the beginning of August we moved house from Engadine to Balgownie in North Wollongong.  The decision to move areas had been a tough one; here's how it came about.
Firstly we decided we needed to move house due to the poor disabled access we had for Jacob in our old house.  We had so many steps and stairs that it was making it very difficult for Jacob to get around on his own and we could see his frustration at having to rely on us to enable him to go where he wanted.  We decided to find a more suitable property in Engadine.  We got going with all the renovations that needed to be done in order to put the property on the market. 
During this time we were discussing with Alex's behaviour therapists where best to send him to school next year.  I spent much time investigating our options and it was already obvious to us that Alex was not suited to going to a mainstream school due to his autism, his severe ADHD, his sensory needs and his challenging behaviour.  We already had him down on waiting lists for a couple of Aspect schools, one in the Sutherlandshire and one in Corrimal, North Wollongong.
Brendan has been working in North Wollongong for a year, he works long hours, is on call 24/7 and we were seeing less and less of him due to long work hours and travel time. 
Mid-way through term 2 we had an offer of a place for Alex from the Aspect South Coast school in Corrimal.  This school has the reputation of being one of the best schools in Australia for children with a spectrum disorder.  We had already visited it and been extremely impressed by what it could provide for Alex.  Now came the tough decision of balancing the needs of all our children.
If we moved to North Wollongong it would mean finding a new school for Samuel and Jacob.  They  had been doing great at our local school, Marton Public School(MPS).  It had surpassed all our expectations of what it could provide for both.  We were beginning to feel part of a friendly and supportive community, the boys had made some great friendships and were comfortable and happy at the school.  What MPS had provided for Jacob had been exceptional.  They truly understood Jacob's CP only affects his physical self , that cognitively he is a very bright boy and they believed in him, his ability and his potential to learn the same as his peers.  They supported all his needs whilst ensuring he was made to feel like any other child in his class.
Whilst we didn't want Samuel and Jacob to leave such a fabulous school we knew that we would be able to find a new school for them in the North Wollongong area, one that would be able to support Jacob's needs but we believed we only had one choice for Alex.
We therefore made the decision to move areas and have the bonus of being closer to where Brendan works...yay! more help with the boys for me.
We put our house on the market, sold it within a week, found one we liked within the same week and moved 6 weeks later.  Talk about being busy!
The move went well, we've been in our new home for 7 weeks and we are all very happy here.  Interestingly enough, Alex is the one we thought wouldn't cope well with the move and he's coped the best.  In the first week he frequently told us "the new house is my favourite"! 
Jacob is much more independant here due to most of the house being on one level and we can see how happy that makes him.  Finally he is able to keep up with his brothers.
We're sad to leave Engadine and MPS but this has been a good move for us as a family and it's on to another chapter in the lives of the Carroll family.
We hope to stay in touch with our friends in the Sutherlandshire and you can follow Samuel and Jacob's new blog to see what they're up to - http://theadventuresofsamuelandjacob.blogspot.com.au/
Hopefully I'll get to make more regular updates...having three boys at school now surely means there's more of a chance I'll get on top of things?!

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

Jacob's Letter of Introduction

Samuel & Jacob are starting 'big school' tomorrow. I've written a letter on Jacob's behalf which will be distributed to all the other children at his school. Here it is -

Hi, my name is Jacob Carroll and I'm starting kindy this year with my identical twin brother, Samuel. I wanted to introduce myself because you'll notice that whilst we're identical twins I look slightly different to my brother and probably most of you.
I was born with a condition called cerebral palsy (CP) which is a physical condition that affects movement. It affects the whole of my body and means that I find it difficult to keep my balance and keep still. I have shaky movements and it often takes me longer to complete physical tasks but I get there in the end.
You'll notice that I can't walk on my own and I have a wheelchair to ride in. I have a walking frame which I use for short distances. None of this stops me from being able to play and have fun with my brother and friends!

If you see me in my classroom and around school without my hat on you'll notice that I have some hearing aids on my head. These are cochlear implants and if I'm not wearing them it means I can't hear you or anything else because I'm deaf in both ears. I've been deaf since I was born and was lucky enough to get my implants when I was 2.5 years old. When they were 'switched on' I didn't hear straight away and I've had to learn to listen with them. I can now hear really well but I don't hear in the same way as a 'hearing person' does. I have to concentrate really hard to listen to a person who's talking to me. If there are a lot of people talking at once I find it difficult to know what anyone is saying. If you pass me in the playground and say 'hi' I might not hear you so please don't think I'm ignoring you. If you want to talk to me it's a good idea to make sure I can see your face and that will help me to know you're talking to me.
I'm really excited to be starting school and am looking forward to making lots of friends.