Julia

Recently Julia passed another milestone in her life by celebrating her 40th birthday on 3rd March 2023 with her family and friends.

Over the last few years Julia’s lifestyle has continued to get better and better. As usual with Julia she was unaffected by the Covid epidemic (she very rarely gets sick) and continued with her very hectic lifestyle as far as Covid regulations would allow. Covid did affect Julia’s volunteer work programme however as the closure of her work places meant her work programme ceased and did not continue when the facilities reopened. We are subsequently looking at new work places where Julia can continue her volunteer work, but so far without success. As in many areas, suitable work facilities are limited for people with special needs but we remain hopeful such a facility will eventuate.

Like many CHARGErs Julia is capable of performing many tasks. Her memory is good and after a short period of training she performs her allotted duties quite well. One improvement is her spontaneous action in cleaning and cooking. She now washes dishes and disposes of garbage without encouragement or prompting. She also microwaves her own meals without assistance. To misquote a famous saying “a giant step forward for Julia - a small step forward for her parents.”

Several years ago, Julia was given NDIS funding to improve and maintain her lifestyle. Part of the funding was allocated to improve Julia’s signing which we did with the assistance of a teacher of the deaf. As a result, her communication and behaviour improved dramatically. We also received funding for a carer to take Julia on her daily activities for 35 hours a week. The funding also allows Julia to attend short term support accommodation several times a year at a local facility and attend a physio programme twice a week to help with her muscle tone. She goes shopping, attends social activities, and also reinforces her cooking skills once a week. Her favourite activity is shopping. We are also currently looking at Julia attending the VIVID show in Sydney in the near future. Like many things associated with CHARGE these achievements did not come easily and we had many trials and errors before we found the correct mix of funding, facilities, carers and suitable improvements in Julia’s lifestyle. We are currently self-funded with NDIS and Julia’s review is now every three years.

Julia now has a lifestyle compatible to her current needs. These needs will change with time. Due to her speech and hearing loss, she may need some assistance to continue on her journey through life, but these problems have become a non-issue now that her learning and communication skills have continued to develop to another level. Associated with these skills is an increase in her self-confidence and determination to complete tasks. She has also become more independent and spends more time now “doing her own thing.” in her own space.

Like many CHARGErs, Julia has overcome many difficulties during her 40 years of life, especially her early years. Like many CHARGErs she continues to amaze everyone by learning new skills and developing her own unique lifestyle, albeit in her own timeframe and manner.

We remain confident that Julia will maintain her self–confidence, determination, independence, skills, sense of humour and love for her family for many years to come.

Ken and Marie Patterson