The Langcaster’s Story

Bernadette Langcaster, mother to five year old Travis who was diagnosed at birth with Down Syndrome, considers her life pretty normal. Her positive outlook and love of Travis is apparent as she speaks with enthusiasm about the little ‘ratbag’ who puts a smile on the faces of those around him. She expresses little grief or sadness around the process of discovering her second child’s disability. Instead she views him as a typical child who is talented in some areas, and not others.

‘It was a little difficult but it didn’t really matter. We had Travis,’ she explains. At the age of 40, the chance of Bernadette producing a child with Down Syndrome doubled, but this did not deter her. ‘We contacted the Down Syndrome Association. They were helpful and sent lots of information. They weren’t intrusive if you didn’t want help.’

Bernadette says it’s easier to get early intervention if your child is diagnosed at birth. They were allocated a case manager straight away, and physiotherapy was arranged and conducted in their home when Travis was six months old. Shortly after, a speech therapist was assigned to assist with feeding. When Travis turned one and his paedatrician recommended early intervention, Bernadette’s case manager provided a list of centres. Bernadette made enquiries and selected the most suitable one. There was no waiting, and physiotherapy began immediately.

At Norparrin, Travis received physiotherapy, occupational therapy and later on, speech therapy. Initially the team concentrated on getting Travis walking. The strategy changed towards the end of his time and they began working on speech in readiness for kindergarten. ‘The staff are great, and I’m thankful there are people out there to help us, to teach us and to show us. Their advice helped a lot, their ideas were great and things I wouldn’t have thought of myself. Travis has improved enormously.’

Typical problems for children diagnosed with Down Syndrome include congenital heart defects, thyroid issues, low muscle tone and hearing problems due to the size of their ears. Many of the children experience delayed mental and social skills. There is no specific treatment for Down Syndrome, but there is for the associated health problems.

Difficulties arose for Bernadette when trying to source information about government funded initiatives such as the companion card, continence funding and disability parking. This information was mainly sourced through word of mouth or early intervention. There was no one place to go and no list available. Eventually she was given guidance by a thoughtful member of her ‘My Time’ team who drafted a list of local resources.

Life would be very difficult for Travis without intervention, and Bernadette believes he would be much further behind in his development without their assistance. She would like longer hours, perhaps two days a week so that Travis could experience a wider range of services, and receive intensive treatment. She believes he would benefit from that.

In general, kindergarten has been a good experience for Travis, but presented a steep learning curve for the teacher. Her knowledge of other disabilities helped somewhat, but Down Syndrome proved to be a new and unexplored entity. Nonetheless, they feel comfortable, and believe the staff to be excellent with Travis.

Meeting new people because of disability has been a good thing for the family, but the downside has been the dedication to the never-ending cycle of specialist appointments. There is little free time for Bernadette and Travis as they navigate the health care system. Despite this, Bernadette remains positive and looks forward to increased time when Travis starts school next year.