Julyen
Julyen is very musical, and recently produced this piece of music: Julyen's Rave
Julyen was born July the 3rd, 1985. He weighed only 4 lbs, 4 oz (1912 grams) at birth. He had trouble sucking and I never succeeded in establishing breast feeding. It took a number of weeks for the hospital to diagnose him with Cri Du Chat and I clearly remember the doctor saying to me that "he could not give him any medicine to make him better". I was in shock at the time, but if a doctor ever said that to me now I would report him! Nevertheless Jules was a gorgeous and very happy baby.
I have been fortunate in having the support of Margarette Christie and knowing her daughter Mindy since his birth.
Julyen started early intervention from the age of six months going to EPIC which is a service generally for children with Down's syndrome. Left is a picture of him in his 'learning chair'. He actually used to hate it and still is excessively stubborn if he doesn't want to do something, particularly if it involves effort.
At four years of age he went to kindergarten with an integration aide and a wonderful teacher called Miss Humphries. Here is a photo of Julyen with his class - he is third from the right in the bottom row. He wasn't walking then - he had about three different types of crawls, one of which was a sort of bunny hop. Nevertheless, he was extremely quick! The other photo is with his teacher. You will notice the mark on his face. Unfortunately if he has a mosquito bite or a sore he still picks at it and it takes forever to heal. It has been a habit of his for a long time.
From Prep to Grade Four, Jules then went to Diamond Valley Special Developmental School two days a week and a mainstream school Wattle Glen Primary School three days a week with an integration aide. Funding was obtained to have his own portable toilet and shower on the school grounds and over those four years he became toilet trained and was able to shower himself. He still soils occasionally but this is not his fault. Below is another photo of Julyen with his class mates at Wattle Glen.
Julyen is in the middle row, third from the right. He has two wonderful aides who worked with him throughout his time at mainstream school. Julyen has a great sense of humour and he used to call his aide pictured standing at the far right 'shut up Shirley'!
I believe that mixing with non-disabled children for such a long time at school meant that he overcame his self-stimulatory behaviours such as hand flapping and head banging. Jules is a great mimic and can demonstrate such behaviours that others at the Special Developmental School display and to do so he thinks is a great joke.
At Diamond Valley Special School he has also received a wonderful education with caring teachers who have catered to his individual needs and interests. It is going to be an enormous change for him to move to an adult day program next year.
In general Jules has a very happy disposition. He loves being with people, makes friends easily, has a very good memory for–people, things and events . He enjoys his friendships, especially with adult males and often has a special phrase or gesture he uses with different people, something unique to that person. Below he is pictured with two of his favourite male friends. He is on the tractor with 'Buddy' (when he is about 12) and on the right with Brett ( taken at age 17).
Julyen has a very broad range of interests. He loves fast vehicles such as motor bikes and planes. Most years he gets a ride on a Harley for his birthday.
He also loves to fly!
He has a large collection of hats and loves going to parties and giving every person one to wear.
On the down side, Julyen is excessively hyperactive the majority of the time and is fascinated by switches and buttons of all descriptions. He loves turning things off and on and will do it incessantly. Of particular appeal are lights, fans, stereos, and TV's. At home there are locks on everything, the fridge, pantry, bathroom cupboards and the TV and stereo is locked behind double hung windows. Just like a man he also loves power tools and cars. One of the most frightening times I have had with Jules was when he got up in the middle of the night found the keys to the shed and brought in the electric chain saw. I awoke just in time to stop him plugging it in! He was about 8 years old at the time. He also has written off one of my cars by taking it for a drive down the hill! But he has at least nine lives....
Julyen's father left and moved interstate when he was four and except for about 2 and a half years I have cared for him as a single parent. Jules turned 18 in July this year and has grown into a man who is my height and despite me becoming a gym junkie and going to 'Body Pump' he is far stronger than me. Below is a photo of him with me when he was about 15 and another taken recently looking like quite a spunk with blond hair and a leather jacket. I have used about every respite and home based care service I have been able to access but he has become too much to look after on my own. About four months ago I came home from the Cri du Chat AGM and he had had one of his 'adolescent rages'. He had hit his carer and broken pictures, plates and bowls. I just cracked up the next day and unable to work went to Julyen's doctor and said that I cannot care for him on my own any longer. He was placed in the local respite house and has been there ever since.
As a full time working mum, I used every respite and home based care service that I was able to access but he had become too much to look after on my own. After he had turned 18 I came home one night from the Cri du Chat AGM and he had had one of his 'adolescent rages'. He had hit his carer and broken pictures, plates and bowls. I just cracked up the next day and unable to work went to Julyen's doctor and said that I cannot care for him on my own any longer. He was placed in the local respite house and stayed there for about 12 months. This period of time was very hard for both Jules and I for a number of reasons. He had to be deemed 'homeless' to be placed in the priority queue for accommodation, had multiple carers who despite their best intentions did not always understand his individual needs and after taking him out would have him pleading 'home please'. What was also hard was knowing that he was taking up a respite bed that other parents needed.
Current Victorian government policy is to try and maintain children, young people and adults with disabilities with their families for as long as possible and despite an enormously long waiting list there has not been any new funding for new supported accommodation beds (aside from the Kew Cottages redevelopment). The reality is that if our children didn't have a disability when they become adults they would have the opportunity to be develop new relationships and to be leading lives of their own in the community with the support of their parents. Around the time I placed Jules in respite, two other parents in my region had also left their children in respite care because they couldn't cope anymore. When he was in respite, I was about to start a campaign to find alternative accommodation for Jules as I have done in the past to ensure he had another year in kindergarten, have aide coverage over the school lunch breaks etc. However, with only 5 residential respite beds in the region the situation of having 3 respite beds being 'permanently' taken up became a problem to be solved so fortunately a house that had been closed some years earlier was re-opened on a temporary basis to accommodate Jules and the two other adult males.
Jules had now been in this house for over 12 months. It is not ideal for him because the two other residents are non-verbal and he really needs to be living with peers who are interactive but it may be some years before an appropriate home for him becomes available. Nevertheless, the care he is receiving from the staff at his temporary unit is exceptional and I am happy to report that after taking him out, now rather than saying to me ' home please', he happily says 'bye mum' as he really enjoys where he is living and is enjoying good quality care from a team of staff who appreciate him as a wonderful individual. Below is a photo of him at his 19th birthday listening very intently to a band with his best friend Sam and another of him opening his birthday presents at his house.
