Now, it has been about nine years since I last wrote about Julyen’s progress so I was definitely overdue for an update. In sitting down to write this, I read the other family stories and in doing so felt part of a community of care and understanding. While each story is different, uniquely powerful and written in a different personal style there is an overwhelming theme of great love and joy and hope for the future. Julyen is now 34 years of age (see recent photo above) and I am happy to report living a full and active life in the community surrounded by wonderful people who enjoy his resilient and vibrant personality.
The years seem to always fly by as a parent and children tend to mark this time by their annual birthdays and achievements. One thing noticeable about Jules is that time and people seem to stand still and people never age, die or leave. This is unlike one little girl I overhead recently that said to her grandmother “Nanna, why doesn’t your skin fit on your face anymore?”
For Jules, the years have a particular routine and progress in an unchanging cycle of events, and I have approximately six weeks of nagging i.e. him asking repeatedly about the next event as if it won’t happen unless he receives constant reassurance that it will occur just like the time before.
Having a routine is something I reinforced early and served a number of functions. Firstly, the most important word in the English language for parents is in my opinion ‘after’ as to understand ‘after lunch’, ‘after one more sleep’ etc has been invaluable for containing his impatience and having some understanding of the concept of time. Second, his dislike of sitting on the toilet was a necessity to overcome when experiencing constipation and I dealt with this by placing a calendar on the wall next to the toilet with pictures of events coming up (i.e. tents for camps, cakes for birthdays etc) and this gained his interest and he would sit on the toilet for long periods as we talked about what was going to happen in the future.
Julyen now has an annual calendar of events which in his own language goes as follows: At the moment he is on camp, (i.e. “I need a camp”) next comes ‘ho ho’ (i.e. Xmas and “more presents please”), next his holiday (“plane please” followed by arm movement of flying) where we either visit his father in Tasmania or go to the theme parks at the Gold Coast (“weeeee splash” i.e. the ride that goes in the water). However this year we went to the Qld Family Day (see photo below) and our next trip will be the CDC conference, which are both holidays I am excited about for a change as it is an opportunity for me to share and mix with other families rather than feel like one is traveling alone. Then comes “eggs please” (i.e. Easter), then camp followed by “more presents please” (i.e. his birthday where we always goes to see Circus Oz), then camp again, then ” I need a party please” with “I need a champagne” followed yet another camp (i.e. “ I need a sleeping bag”). As you can see, he is very able to express his wishes and he experiences overwhelming excitement and joy about these events with such simplicity in personal fulfillment. I often envy him his approach to life and his lack of existential worry. My only concern is that while he continues to live life with the energy and anticipation of an active six year old, how will I keep up? Just as well they say 50 years is the new 30 and 70 the new 50!!!!!
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 in a condescending manner 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.
As a baby he slept very well but as he got older both going to sleep and early waking became problematic.I dealt with his sleeping difficulties by making sure he had a period of no stimulation prior to bedtime i.e. he had to sit with me quietly listening to what we called ‘sleepy music’. I also separated his playroom from his sleeping area. I put a wall up in his room dividing it into 2. His sleeping area only contained his bed and a small chest of drawers where I put a choice of two set of clothes. If he stayed up or woke up during the night he had nothing to do but either make his bed over and over or to get dressed over and over- both good learning experiences! I admit to locking his room and if he pounded at the door I would ignore him. Once he was asleep I would unlock it so he could go to the toilet, noting that his playroom remained locked. This strategy worked most of the time. Fortunately as he has grown older, like all of us, has come to love his bed and enjoys sleeping in.
I have been fortunate in having the support of Margarette Christie, Mindy’s mum and one of the founders of the Cri du Chat support group since his birth, although we didn’t meet in person until later.
There were very few ealy intervention options available but from the age of six months I was able to access a program called EPIC which was a service designed for children with Down’s syndrome. He attended twice a week and as a fairly rigid behavioural program he became very resistent, and generally cried throughout the entire session! However, he enjoyed the play equipment after the session while I talked to his therapist and in reflection he would have benefited more from a more flexible, incidential learning approach using social praise.
And then on his first piano. It is to be noted that this piano eventually became a harp as he systematically dismantled it to see how it worked. What was left was the iron frame which I then mounted outside where he could play the strings. More about protecting the environment and his possessions from destruction later.
At four years of age he went to kindergarten with an integration aide and a wonderful teacher called Miss Humphries. See photo below. 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 and skin picking, particularly on his forehead continues to be a problem especially if he is feeling frustrated and unable to communicate his needs verbally. I successfully obtained the funding for Julyen to attend for a second year, prior to starting school and this was very beneficial as he thrived in a play based environment while learning the skills of sitting still (e.g. at story time), following instructions and co-operating with peers.
From Prep to Grade Four, Jules then went to Diamond Valley Special Developmental School two days a week and to a small 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.
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 he attended displayed and to do so he thinks is a great joke.
At Diamond Valley Special School he also received a wonderful education with caring teachers who have catered to his individual needs and interests. He enjoyed an art program, gardening, cooking, horse and bike riding, music and the annual school camp. Whilst he doesn’t practice all he learnt on a consistent basis, I can recall one morning when he surpised me. He had woken up early and made himself a cup of tea and cooked scambled eggs in the microwave and made toast. I might add that he did so without breaking the whole dozen eggs which was a miracle as I eventually had to put a lock on the fridge to stop such cooking exercises occuring without supervision.
At school Julyen also had music lessons with another student called Sam and they both performed at school concerts. Sam and Julyen remain good friends. Sam now plays for a band called Rudely Interrupted which has travelled the world and played at the United Nations in New York during the Year of the Disabled.
It was an enormous change for him to go to adult day program where the the staffing ratio is significantly poorer and the range of activities more limited. A number of facilities wanted to put Julyen in the high support needs section of their program and I had to search for a program that did not segregate clients. After six years of day program, Julyen started to refuse to go, I think because he was becoming bored with his schedule. Unfortunately whilst we tried to put him some of the more interesting activities such as cooking and music there wasn’t the staffng to manage his distractable behaviour. Therefore I decided to take Julyen out of day program 2 days per week. For the past 3 years I have been self managing his individual support funding to employ people to take him out, generally to see music and concerts or to ride a motor bike and for him to attend four camps per year. This has allowed Julyen the opportunity to mix and develop close relationships with others outside of his house and day program.
Personality and Interests
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. In fact these days I have to ask him if I need to remember someone’s name! He enjoys his friendships, especially with adult males and more particularly those with beards. He often has a special phrase or gesture he uses with different people, something unique to that person.
Julyen has a very broad range of interests. He loves fast vehicles such as motor bikes and light planes. I am rather scared of these rides and only commit to going on one new fast ride a year as it is all my heart can cope with.
Jules also loves water. So much so, that I had to build a bath into the deck at home as the bathroom floor collapsed due to rotten floorboards from all his splashing. By the bubbles here you can see why! He loves swiming too and can dog paddle about 30 metres and stroke underwater. He particularly loves water slides, where he rolls a ball down the slide then swims after it. He also 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 were locks on everything; the fridge, pantry, bathroom cupboards and the TV and stereo is locked behind double hung perspex 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….
My caregiving experience and Julyen moving into community residential care
Julyen’s father left and moved interstate when he was four and except for about 2 and half years I have cared for him as a single parent whilst working full time.
This has not been easy especially when at mainstream school as the funding didn’t cover the whole school day and he had to be picked up at 2 pm. I used to have to take work home and complete it after he eventually went to sleep. It also lead to me having multiple jobs at the one time (rationale worked on outcomes without having to be in the one place 9-5 pm). I ended up having to work for myself in order to juggle work and caregiving. I was also an owner builder and eventually completed a separate cottage adjoining the house so I could offer free rent in return for taking Jules off the school bus and this was a great help.
We socialized a lot and had a good network of friends but I have to say even when going out it was somewhat of an isolating experience because Jules dominated my attention so much I could rarely have a decent conversation with others. Further the overnight respite I had was on a Monday or Tuesday night- yeah just when everyone was recovering from their weekends…. Also relationships were difficult to keep both because Jules was extremely possessive and there were often disagreements over parenting. However, I did have a wonderful interchange family who cared for Jules one weekend a month for a number of years and below is a picture of Jules with their children (note: these children have now grown up and one is now a solicitor and the other a major store manager!).
When Jules turned 18 he had grown into a man who is my height and despite me becoming a gym junkie and going to ‘Body Pump’ was far stronger than me, especially when determined to do or go somewhere. I used about every respite and home based care service I had been able to access but he has become too much to look after on my own. I came home one day, ironically enough from a Cri du Chat AGM and he had had one of his ‘adolescent rages’. He had hit his carer and broken pictures, plates and bowls. This was in part because the carer was unable to turn off the ‘Mr Bean’ DVD and he has always been a bad role model for Jules! Anyway, 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 going to respite that night and I just left him there and refused to take him home.
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 he would plead ‘home please’ and hold on to the car door. I would have to pull him off, distressed and into the house. What was also hard was knowing that he was taking up a respite bed that other parents needed as he was there for approximately 12 months.
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. 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 was in this house for over 2 years and turned 21st whilst there.
This temporary unit was not ideal for him because the two other residents were non-verbal and he really needed to be living with peers who were interactive. Nevertheless, during this time I was able to set up a multi-sensory and music room for him – see below. He also adjusted to living there and rather than saying to me ‘home please’, he happily said ‘bye mum’ as he really enjoyed the staff team.
The first permanent accommodation offered was a house with a non-government agency. It already had 4 clients, 3 of whom were non-verbal and the storeroom was being offered as Jule’s bedroom! This room was extremely small and there would have been no space for Julyen’s musical equipment which is his main interests as he either plays his keyboard or listens to CD’s tracks he selects for a few hours every day. It was made clear to me that this was no legitimate reason to reject this offer as there was nothing else available and the temporary unit was closing in 6 months.
My requirements for Julyen were to be accommodated with verbal clients and to have space for his musical equipment. Under significant pressure I just stood my ground. Eventually another unit, which was actually empty at the time was re-opened and the staffing funded for Julyen and another 2 clients of his age to be placed together. Over time Julyen has formed a close bond with these clients and they miss Julyen when he is away on camp for example. I have spent significant time and resources Julyen proofing his room (e.g.. having the electricity to his equipment wired to be turned on and off from the staff office so that he doesn’t play in the middle of the night). In conjunction with a wonderful service that uses volunteer tradesman to modify equipment for the disabled (see http://www.tadvic.asn.au) all wiring related to his keyboard for example is encased in plastic pipes and the electricity switch hidden in a metal box all secured to the wall.
At left is a picture of Julyen in his room. His has a Nakamichi 10 CD listening station which allows for disc and track selection using a face plate to avoid him changing the CD’s himself and dismantling the wiring. This is encased in a purpose build persplex box. Metal speakers have also replace headphones to avoid him breaking his headsets. An old set of traffic lights has replaced commercial systems as I have found these to be robust.
His keyboard is a Roland F100 64 digital piano, which is easily navigated as he gets too frustrated in if there are too many options and buttons. His favorite sound is the airplane! Although he also composes very gentle ‘chill’ music and when playing staff often think a relaxation CD is playing.
Every Sunday I take him out to see music and he is well known at a number of venues. He is the most enthusiastic of audience members, clapping applause just at the right time, often encouraging others to join in. Sometimes, if he gets tired of standing he will sit down right up front!