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News from Australia

The members of the Cri Du Chat Support Group of Australia are separated by great distances but we try to get together whenever possible. Early in 1998 we had two family get-togethers - one in Sydney and one in Melbourne. There will be another one in Queensland in mid-October. Our group has over 60 members, most of whom are in Australia but we also have members in New Zealand, Chile and South Africa. This is a small collection of photos of a few of the children and adults who attended these last two meetings. We can be contacted by email at maggiecdc@bigfoot.com or by snail-mail to: Wendy Craig Cri Du Chat Support Group of Australia 5 Connal Drive Frankston VIC Australia 3199 Phone : 61-3-9561-8134 or 61-3-9783-8198 Fax: 61-3-9791-8577 or 61-3-9783-8198

This family meeting was at the home of one of our Sydney families and it was a very hot day so Hanne (pronounced Honey) has just come out of the pool. Hanne is quite accomplished for her 8 years. She is learning to read and write, swims very well and speaks in full clear sentences although still with the distinctive high-pitched voice.

Here is Arthur, who is also from Sydney and fresh from the pool. He is very active and a great swimmer but not much of a talker. Arthur is 8 years old in this picture.

This is Mikyla who was nine years old at this cri du chat group family meeting at the zoo in Melbourne. Mikyla lives with her family in a small country town outside of Melbourne. She enjoys dancing and swimming and can speak well enough for others to understand her basic needs and wants. Mikyla is particularly sensitive to some sounds and this was such a problem for her when she was five that her family took her for Auditory Integration Training (AIT). This was very successful but they have noticed the return of reactions to the same sounds which had bothered her prior to the AIT. This can happen after AIT and in such cases another series of treatments are recommended. Sound sensitivity it quite common among our children but with many it improves over time. Whether they simply adjust to it or the sensitivity reduces is not known. Mikyla is the only one of our Australian group to have tried this treatment.

Friends - twenty three year old Jacinta (left) and twenty six year old Mindy are from Melbourne. There is a picture of them on vacation together in Jeff's gallery. Jacinta loves singing, swimming, drawing, movies, travel dancing and even made her debut. She can't speak much but signs well and manages to get her message across - she always has plenty to say. Mindy never stops talking and also loves swimming, drawing and travel. Her favourite pastime is shopping. Jacinta and Mindy have around the same level of ability and test in the severe to moderate range of intellectual disability. They recognize a lot of words but cannot read and although Jacinta can write her name you could not say that either can write. Both are stubborn, manipulative and prone to tempers but they are also loving and caring, happy much of the time and have a great sense of humour. They are sensitive to particular sounds like Mikyla and nervous in large crowds and some other situations, which accounts for some of their emotional reactions. They attend day programs where they do some work activities, independent living skills training, crafts, swimming, gym and other leisure activities. Mindy is living in a residential home with five other young people with disabilities where there are two staff to care for them. She has enjoyed living there for the past seven years. Jacinta still lives with her mother but will move into a residential home with three other residents early next year. Jacinta suffered severe gastric reflux as an infant requiring naso-gastric tube feeding for some time and was a very small baby. Her first year was a battle and she has had life-long problems with ear infections and severe constipation, which eventually resulted in some surgery. Mindy was a huge 9lbs 4ozs at birth and except for problems with feeding, frequent bronchitis as a child and teenager (which runs in the family) and a few bad falls, she is now fairly healthy. She has problems with constipation but is fortunate that it is well-managed with diet although in the last few years it has required fibre supplements and occasional laxative treatment. They have frequent colds with an almost perpetual runny nose and have had a few bouts of pneumonia over the years. Both wear glasses and have very minor hearing impairment. In other respects their health is good and we expect them to have relatively normal lifespans. They are both around 5' 7" tall.

Troy who is also from Melbourne, is two years old and is doing very well in spite of a tough first year filled with health problems requiring many trips to hospital for pneumonia and other conditions. He is crawling and walks with support.

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