Families In Need

There are many, many families who will benefit from SNUG's activities. Here are three typical scenarios faced by families in rural areas.

Story 1

Phoebe is a two year old child with Turner Syndrome. She has problems with reflux which causes her a lot of pain and distress and the acid from her stomach is making her teeth erode. Phoebe also has a heart defect and recurrent ear, kidney and urinary tract infections that require specialised attention.

She would benefit from advice from a specialist speech pathologists to improve her swallowing and commuication development. She has one older brother, Tim aged six and both her parents care for her. Her family live in a rural town of NSW, five hours drive from Newcastle.

Phoebe needs to see a pediatrician to prescribe growth hormone replacement therapy. She also needs to see a cardiologist, ear nose and throat specialist, , seating clinic and a dentist with experience in special needs dentistry. Their attempts at taking family holidays have been thwarted by Phoebe’s ongoing and complex health problems.

The most recent plan was to visit Sea World. The holiday was interrupted by Phoebe’s need to be treated in emergency for a kidney infection. Her father and brother continued with the vacation while her mother stayed with her in hospital. SNUG would allow Phoebe’s family to have a well earned vacation and at the same time to access all the specialist services that needs to be coordinated for Phoebe’s wellbeing. Her parents would have some time alone together and Tim would meet and recreate with siblings of other children with Turners Syndrome.

Story 2

Toby is a two-year-old infant with Down syndrome. He has two older sisters, Amy and Sarah. His parents own a farm in mid-western NSW. The children were home schooled until recently, when Toby’s needs became too great for his mother to manage both his needs and the girls school work. Amy and Sarah now travel over two hours each day to attend a school and Toby’s mother remains at home to care for him.

The drought has created financial restrictions making it difficult for them to plan a holiday. Toby has chronic ear infections, is seriously delayed in his communication and swallowing skills and lacks muscle tone. There are no other children with disabilities in the family’s circle of friends and they have few people to turn to for advice. Toby’s mother just wants to spend time with some people who really understand what she is experiencing – both the joys and the hard times.

A one week residential program with SNUG would allow Toby’s family to meet other families with a child with Down Syndrome. By networking families, and facilitating ongoing connections between the families, the Agrenska program in Sweden has shown that families access professional services less after the residential program. Instead, they consult each other to help meet new challenges. Like many families in drought stricken NSW, a family holiday is an unattainable dream. SNUG would provide a holiday environment for the family while addressing Toby’s many health issues at the same time.

Story 3

Jill has a global developmental disability of unknown origin. She is in a wheelchair and is seven years old. Her mother, Julie is a sole parent. Julie’s mother lives nearby and offers a lot of assistance. Jill has outgrown her current wheelchair and needs to be assessed for an appropriate new chair. She also needs to see a paediatric neurologist to reassess her anti epileptic medication. She has never seen a dentist since Julie detects that the local dentist is unsure about how to examine Jill effectively.

They live in a rural town with a population of 3,000 people. There are several other families with children with disabilities in the town, however, they are more able than Jill and so she is often not included in many of the activities that these families organize. They took Jill to Newcastle three years ago to attend a Seating Clinic. At that visit, the occupational therapist advised them of the many services in Newcastle that would benefit Jill, however, it was too late to get any appointments with the specialists.

A one week residential with SNUG would ensure that Jill has a coordinated plan to see the neurologist, Seating Clinic and special needs dentist. Julie can bring her mother with her as the other significant person in Jill’s life and they will have the opportunity to spend five days with other parents of children with global developmental delays.