The Cowley Family's Story

Beck shared her family’s journey so far and the key workers who have helped with Jasper’s development.

Tell us a bit about your family’s journey with Noah’s Ark.

Jasper is a very happy two-year-old little boy who is the youngest of five children. He was diagnosed at two weeks of age with a rare chromosome syndrome called 49,xxxxy. This syndrome occurs in 1:100,000 births and only affects males. This syndrome is a chromosome abnormality which is characterised by three extra X chromosomes. The more X chromosomes a person has, the more severe the developmental delays are. This syndrome’s effects can vary but include; intellectual disability and learning difficulties, speech delays, low muscle tone, delayed growth, skeletal abnormalities, susceptibility to respiratory infection as well as varying effects on the heart, brain and kidneys.

There are only a handful of males in Australia with this syndrome and approximately 4000 males worldwide—so for families such as ours, this can be quite an isolating and lonely experience. We were navigating this whole new world of specialists, interventions and tests as well as researching and learning all we could about this syndrome as none of our specialists knew anything about 49,xxxxy. All this whilst parenting five children and adapting to life with a child who has needs beyond what we had experienced before with any of our other children.

We were placed with Noah’s Ark when Jasper was eight months old and they have provided support not only for Jasper, but the family as a whole. It is not an easy situation to open up your home and life in this sort of scenario to what essentially are strangers coming into, and being a part of your life—however our Key Worker, Kate, and the Team Leader, Sara soon became very welcome people in our lives. Jasper adores Kate and his face lights up whenever he sees her and our other children feel really comfortable and at ease around her also.

We were placed with Noah’s Ark when Jasper was eight months old and they have provided support not only for Jasper, but the family as a whole

What goals did Jasper need help with?

As Jasper is quite significantly delayed in his development, he requires support in achieving the typical ‘milestone’ stages that we take for granted as parents. We have set many goals for Jasper; things like sitting independently or eating and drinking without choking are some areas that we have worked on with our team. When Jasper achieves these goals it is something that is celebrated because our team knows how hard it has been for him to get to that point. We have many other goals that we are working on to help Jasper with his mobility (standing, crawling, walking) and his ability to communicate as he is nonverbal, however we know that he will get there in his own time and he is lucky to be supported by a team of specialists to help him get there.

What tactics did your Key Worker come up with to solve or aid the issue?

Kate has a wealth of knowledge in her field and many great ideas for how we can support Jasper in achieving his goals. At times Kate has referred us to other areas within the team such as a Speech Pathologist to focus on skills like feeding and drinking issues we have had, but also for working on strategies to support Jasper’s communication. She has also brought in other Occupational Therapists from the team to help with assessments and applications. This Transdisciplinary model of support means that we have access to a very knowledgeable and supportive team who work together to achieve positive outcomes for Jasper and the other children they work with.

Kate is also a great advocate for Jasper and has supported us in our application for the NDIS and attended our planning meetings which we were so grateful for. It is a daunting process, so having her guidance and advocacy was appreciated. Kate has also helped with funding applications for essential equipment for Jasper, and liaises with our other therapists. She truly is amazing and so appreciated. We are one of many families she works with but she is always happy to help us where she can, or refers us to other workers who may be able to assist in a different capacity.

(Back row) Will, Beck, Neil and Alyssa Cowley, (middle) Poppy and Toby Cowley, Key Worker Kate Garam, Team Leader Sara Beeching, and (front) Jasper Cowley.

Did they help you cope mentally with the challenge?

Sometimes this special needs parenting journey can be overwhelming and stressful, however Kate and the team at Noah’s Ark are so understanding and empathetic of this situation. We know that we can talk to them about the frustrations, sadness, stress and other emotions that we feel without judgement because they know that families with children who have additional needs are faced with a lot more challenges. They can sometimes offer suggestions or advice or just give us the push we need to refresh and renew our fight for the best outcomes for Jasper.

We feel so supported and empowered as a family in this situation

Anything else you’d like to say?

We are really thankful for the support, encouragement, advocacy and friendship we have received from the team at Noah’s Ark. We feel so supported and empowered as a family in this situation and we know that with his team behind him, Jasper is going to achieve his goals and have the best possible life we can give him.

Extracts from this interview appeared in the August 2019 edition of Mornington Peninsula Magazine.