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Voice July 2016 | The Journal of Down Syndrome Australia

Sharing the journey of Down syndrome across the Outback

Sharing the journey – Travelling the Outback by Rachel Kroes

Rachel Kroes, Executive Officer, Down Syndrome Association NT takes us out back to meet families in remote and regional Northern Territory where cultural diversity must be understood and respected before the common connection of parenting a childwith Down syndrome can begin. But Rachel and her team have to get there first, a big challenge when journeying through the vast outback of the Northern Territory.

Miles of dusty roads

How far is remote? There is always a keen sense of anticipation when searching the map of the Northern Territory for the community where, by word of mouth, someone has advised our team that there is a child with Down syndrome. How can we get there? Who else visits? Can we hitch a lift? So, a picture slowly forms as we filter the terrain through a geographical, cultural and financial matrix. Seasonal weather will determine the depths of rivers to cross, the ferocity of storms, plunging temperatures of nightfall and mode of transport. Once the journey has been plotted, (coach, land cruiser, charter plane, hitch a lift, walk – variants or all of these may apply) then we set about establishing contact with the school and health clinic seeking a trusted link to the family to request our presence on their land and into their community.

Always, as we do this work, the anticipation of meeting a new family or connecting with people we already know, is at the forefront of our enthusiasm. Down syndrome is our specialism, placing this knowledge within cultural respect and the reality of remote lifestyles requires a heart and mind willing to listen and learn.

One does not always leave the community in the knowledge that preconceived goals have been reached, but one always leaves knowing connection and peer support has brought a new friendship into focus. No matter how fragile and tenuous the links of communication are, we know that the very essence of going and being there has brought about positive change and hope.

My colleague, Lyndy Berthon, and I have travelled to seven rural and remote locations over the last two years, several of them many times. The key to development of services and growth in understanding about Down syndrome in Aboriginal culture is to visit often, as communities are well aware of the many services that appear and then disappear. One needs to be consistent, seek out the same people, follow a similar routine each visit and be open to the total unpredictability of remote life. Then, quietly, respect and trust solidifies. Hearts and conversation open and we hear such similar concerns and fears as confided to us by our families in urban Darwin. The geography is immaterial – these mums and dads express their love and concern for their children in ways similar yet unimaginable to city dwellers.

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voice

Voice July 2016 | The Journal of Down Syndrome Australia

Sharing the journey of Down syndrome across the Outback

The school is usually the first place to visit. Vibrant and noisy, these settings predominantly have good facilities, equipment and an abundance of grass root strategies to get the kids to school and imbibe a colourful and cultural learning environment. But with attendance rates already challenged, getting the child with Down syndrome into regular education is the fragile end of the equation. Teachers already deal with a myriad of needs but we have learned that the regular and repetitive professional development sessions we deliver will often bear fruit for the whole class. It is heart-warming to see circles of students using visual and sign systems originally introduced for the child with Down syndrome and teachers often tell us of the value of this specialist approach.

Recognising that these are First Language students in ESL settings makes it essential to engage Indigenous support staff who are critical in bridging the gap of communication. Fortunately, Lyndy is fluent in Kriol (the most wide spread Australian Indigenous language) having lived in an Indigenous community for six years herself, and sign is my own second language of choice so we are able to counter some of the communication divide.

Teaching the See and Learn resources and utilising sign to these Indigenous Support ladies has proven very successful, as the sign is the same regardless of the spoken word.

Using sign, Indigenous staff are no longer at a language disadvantage but are empowered to teach to their strengths. Following on from this we introduce prewriting skills and matching games. Making the sessions fun and realistically achievable quickly grows a sense of purpose. It is wonderful to see these Indigenous staff empowered and enthusiastic to develop into practicing teachers in the delivery of specialised programs.

On to the community clinic where everyone knows everyone else and levels of medical care can be strong or sporadic depending on staffing and skin clan. Imagine going to your local childcare clinic to find staff who, for cultural reasons, or staffing vacancies, were not able to assist you? In one example, the solution was to move the daily nursing care of a severe eye condition into the school, which requires a myriad of risk management issues and flexibility on the part of school support teams. Ultimately, the skilling of a parent or appropriate extended family in ongoing medical care is the only answer. This in turn creates a considerable level of stress and anxiety into the family home.

As a mum of a child with Down syndrome myself, I have had the privilege of sitting with many mums, often the first 'other parent' they have met. Eyes moisten with tears as a hand lovingly outlines the face of another child with Down syndrome shown on an iPad or a photo.

Family time

Reuniting friends

Ready for school

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Time is immaterial as the absorption process of seeing smiling happy faces with features that match their own child slowly unfolds. This sharing and silent support is akin to a spiritual moment and only after its due respectand reverence, can a conversation begin. And when it does, there is a slow and encompassing outpouring of need, a thirst for knowledge counteracted with an instinctive ability to parent their child with a protectiveness and wariness of the system's good intentions. Are knee pads a solution to his continual falling down, when you know that glasses are the answer but to get them 450 kms from the nearest optometrist is not realistic? Walking long distances to school on hot sand prevents attendance, yet shoes are a bonus, not the norm for every child. A love of going to the waterhole with family is matched with a fear of solo exploration excursions. A love of animals is balanced with the possible threat of protective community dogs who frequent the footpaths and front yards of every home. It is hard to be creative in such a fluid environment of potential risk for a child with Down syndrome.

And what of these amazing children? Without exception we find them running, climbing and playing, uttering need through vocalisation and gesture, bright and bubbly regardless of medical discomfort. Parents know their child and how to read and react to requests.

The informality of community life often means there are many watchful eyes, exuberance is celebrated and idioms tolerated. Whilst in a more formal urban environment certain aspects may be frowned on, with this freedom, skill sets of confidence and joy create a unique child; one who just happens to have Down syndrome.

After a couple of nights warding off the cold and animal nightlife whilst being enamoured with the clarity of the moon and the rise of a flat horizon sun, we are ready to travel back. "Sorry but the mining jet has been cancelled, you have been downgraded to the 17 seater," says the ‘Jack of all Trades’ at the airstrip. "Unfortunately there will be no toilet facility on this flight". "Seventeen seats are ten more than usual and so long as the front windshield doesn't leak I consider that an upgrade", I reply with a smile. There is something amazingly Australian in knowing that the outreaches of the outback are also the homes of children just like ours.

Sharing the journey of Down syndrome across the Outback

Melabat brabli gudbinji blanga jidan mijamit en album gija blanga dum ola ting brabliwei blanga ola bignnini hu garram det Down syndrome.

We are very happy to sit down together, to help each other do good things, the best way we can, to help all of our children who have Down syndrome.

Miss T learning

Professional Development

Miss T and Rachel