Our involvement with Lifestart began in November 2005. Our second daughter Ruby was born in April 2005 and it became clear in the first few months of her life that there was something not quite right. She was not thriving, had trouble feeding and suffered from low muscle tone, which made it difficult for her to lift or move her head. This was a very disturbing time as no-one could pinpoint exactly what the problem was but as parents we knew there was something unusual with her development.
We were advised to take Ruby for physiotherapy in an attempt to strengthen her neck muscles and it was at this appointment that we first experienced the sense of isolation that, I think, many parents with children with special needs, unfortunately, experience. The physiotherapist stated in a very abrupt manner that she couldn’t help me because the child obviously had some kind of syndrome and I should check it out. Obviously we had been pursuing every avenue that we could and I found this statement very confronting. This encounter led me to my early childhood nurse who informed me of an organisation called Lifestart.
I was reluctant to approach them at first because we had no specific diagnosis for Ruby and I thought that may be a problem but I cannot put into words how comforted and relieved I felt when I first made contact with this wonderful group of people. The support and guidance and friendship that were extended to us were overwhelming. We were made to feel part of an extended family and were immediately put at ease. Since that time we have received ongoing one-on-one and group therapy which has been instrumental in Ruby’s improvement.
We have continued on a medical merry-go-round where countless specialists informed us that Ruby was a mystery and a diagnostic dilemma but throughout this stressful period, Lifestart were a constant support. We have received weekly physiotherapy and speech therapy and one-on-one sessions with a special educator. There have been many times when we thought Ruby wouldn’t stand up or even walk but the team at Lifestart persevered with their program and it was a very exciting day for us when Ruby took her first steps on 10th December. Ruby also seems to have a mild language delay and we are learning to sign to her to ease her frustration and enable her to communicate more effectively and Lifestart have facilitated this process. I was lucky enough to participate in a program run by Lifestart called It Takes Two where parents were taught a number of strategies to encourage communication with their child.
I am amazed with the range of ideas and strategies that the team at Lifestart are constantly implementing in regards to Ruby. They are always looking for new ways to stimulate each area of development, whether it is through music, play, exercise or meal times. We frequently receive home visits from the staff and are also provided with multiple resources to use in our home to assist Ruby’s different stages of development. This has included splints which we placed on Ruby’s legs three times a day to encourage her to bear weight and various toys and puzzles. The Lifestart program has also enabled us to meet other families in similar situations and while everyone has a different story it is still comforting to meet and talk with others.
In October last year we were finally provided with a diagnosis for Ruby. She has a rare genetic disorder called uniparental disomy which means she has inherited two copies of chromosome 7 from me and none from my husband. This disorder was only discovered in 1988 so there is still much research to be done in this area; however they believe this is what is affecting her growth and her language development.
I believe the staff at Lifestart goes out of their way to help their clients. We frequently receive calls at home to check on Ruby’s health or progress and they have been just as excited as us when she reaches certain milestones. The team at Lifestart is extremely knowledgeable and professional and I feel secure knowing I can talk to them about any concerns.
It is distressing for any parent to discover that their child is ill or developmentally or intellectually delayed, and that is why organisations such as Lifestart are so important to our community. It can be very frightening to be pushed from doctor to doctor, unaware of the implications for the future of your child but Lifestart has been an inspiration to us, helping us to process this overload of information and deal with it all step by step.
We don’t really know a lot about what the future holds for Ruby but she is happy and healthy and as you can see very gorgeous! We feel blessed to have found such a valuable resource on our doorstep and believe much of the progress Ruby is making is due to the support we have received from Lifestart. Their positive and pro-active approach is to be commended. They consistently set and revise goals for Ruby and all of this takes place in a warm and encouraging atmosphere where each child’s individuality is observed and respected. They are doing all they can to assist us in helping Ruby to achieve her fullest potential and for that we are very grateful.
