Brian

 This is the story of our son, Brian. Born 1969, he was our second born. I knew immediately there was something not quite right with him, just knew, but couldn't explain what it was. I didn't see his eyes open for a few days, like he just wasn't ready for the world. He wasn't pretty, he had hair low on his face and down his neck. His mouth turned down when he cried, it still does when he gets upset. The cry was faint and raspy. We stayed in hospital for 10 days (normal for 1969) during that time we were made to breastfeed ourselves, for which I had great trouble. I'd no sooner finish feeding him when it was time to start again! He was so sleepy, I had to constantly tap on his feet to keep him sucking and it continued at home on the bottle. The hospital noted his cry and a slight heart murmur. They had him back for a test at around 8 months. He had nodules on his voice box they said, and it would eventually clear up on it's own...nothing more said about the heart murmur...so we didn't worry. 

As he grew, there was little eye contact with him, he was in his own little world it seemed. He was very floppy, and couldn't take his weight in my lap and I didn't worry about it..."he will in time" the clinic sister would say, the same with sitting up, eating without choking and grasping things. People would tell me to put him in a walker, but I knew that would have been the worst thing for him, he would have just sat there and become bandy legged! I usually left him on the floor until eventually he learnt to crawl, with his head still on the floor! When he bumped into a wall he just changed direction. He seemed to have constant ear and chest infections, always a runny nose and ears, and a wheezing chest. He was on heaps of antibiotics.

 Just after 2yrs, Brian was only just stepping around furniture holding on, and still no speech except "UH". The clinic sister finally made an appointment for us at a Sydney Diagnostic Hospital. We spent all day there, answering a million questions, having blood tests etc, all while Brian was being looked over by various other medical staff. The final diagnosis that day was that, in their words, "Brian was moderately retarded, with autistic tendancies, and he would need a special school in the future, and some may even take him at age 4". Meanwhile, they sent him for hearing checks, (he might be deaf) full body scans (he might have dwarfism) and more blood tests which found borderline thyroid function, but not enough to worry about, so we didn't! Thinking back then during these tests, one doctor said to us, 'What's written about these issues today will be completely changed in 20-30 years as medical science improves'. How right he was, and for us, ignorance was bliss! It wasn't until Brian's problems surfaced years later that prior knowledge might have been more helpful.

We found Karonga Special School in Epping willing to take him at 3! A progressive headmistress believed in getting them in as early as possible even without Govt funding before age 4. So Brian, still non verbal and in nappies, was picked up in a taxi, with a "Taxi mother" to supervise. He attended 5 days a week at normal school hours. Eventually the school acquired its own bus fleet, still with a bus mother, as many children had multiple issues and disabilities. Brian attended Karonga until age 10, by which time he was toilet trained, learnt to speak, in a fashion, also to swim. He went to the theatre, lots of birthday parties, sports days with the most disabled in wheelbarrow races with the aid of the local High Sch students, and the most heartwarming of Christmas concerts!

At 10 Brian was transferred to Rowland Hassal St Special School in Parramatta. The same sort of programme but more concentration with skills already learnt aimed towards more adult, life living skills. They had annual camps away where the kids shopped, cooked and cleaned together. They had educational outings to the theatre, cinema and museums incorporating travel training, reading time tables, and social interaction etc. Brian also had to go to school by himself on a regular bus. He had 2 days training with a teacher...no problems.

At 15 the focus centred on work training and the school hours changed to work hours 8.30am-3.30pm. The work place was an onsite shed where the kids learnt menial skills like making tent pegs, sand blasting, sewing, cutting wood or anything the school could source locally, so long as it was boring and repetitive...it was aimed at future sheltered workshop employment.

At 16 the kids were sent on different work experiences, one day a week to start with, building up to 4 days a week, and 1 back at school. at 18 Brian finally gained full time as a trolly boy at a local supermarket. Most of his friends went to sheltered workshops. Also after he left school, Brian finally earned his drivers licence. It took him a long time to pass the learners written test; reading the questions with multiple answers was no mean feat! He was thrilled of course, and more so when he came home with his licence to drive after only about 10 lessons with a driving instructor!

At about 21 Brian went to work with a friend of ours who managed a factory just a short drive from home. Six years later the company was moved to Melbourne and Brian was made redundant. Another friend took him on, just a bit further away but via bigger main roads. However, he managed the commute well, considering his emerging anxiety in traffic. A friend from school had him interested in radio control model flying and they used to go together to a local model flying club. Brian's boss at work was very lenient and compassionate, he made allowances for Brian's shortcomings.

 In 1998 we moved house, much closer to Brian's work, but that wasn't why we moved. Here Brian was much less stressed with the traffic but was taken advantage of in the workplace by some rather dubious characters, women included!

It was also during his mid twenties that he had started to drink, and by his thirties it had become a real concern to us, so much so that we sought help at a drug & alcohol rehab hospital. Brian was an out-patient for a little while and on medication for 7 months. He saw psychiatrists and counselors afterwards, but all to no avail. We believe it all escalated when the last of his 3 siblings was married and he was left on his own with us, and the realisation that his life was most likely going to be a very lonely one.

We muddled along for the next ten years or so during which Brian's blood tests were showing constantly low calcium readings and we were sent to see an endocrinologist. He is a professor, top of his field, and was confused with Brian's results yet showing no other side effects.

In 2012 we started going to a few seminars to know more about the National Disability Insurance Scheme that was proposed by the Government at the time. We did a six month course in 2014 run by the Jeddar Institute (in Australia) as a lead up to the NDIS scheme, which was due to start in a couple of years...rolling out across the NSW in local Govt areas, one by one. During the course I drew up a map plan for Brian's life to move forward, the vision we had for him and a visual tool for him to see how it could be done. Those two sheets of cardboard proved invaluable as we moved forward and gained the essential services that he needed. We didn't have to grovel or explain much at all, it was all there for all to see in my drawings.

In 2015 Brian's work place was taken over by a big company and moved to far western Sydney making it impossible for Brian to commute. We took him out of work, sold up, and moved to the Central Coast where we already owned two holiday houses, side by side. We used one and had tenants in the other. After a couple of months the tenants moved out and the house became Brian's after a repaint, new carpet and floating timber flooring in the living areas. It's a warm sunny house with a big back garden and double garage underneath. We also added another big double garage at the back to house our caravan and a big workspace for Brian's planes.

We applied for a disability pension and together with my trusty map-plan, easily convinced the Centrelink psychologists that Brian needed it and had earned it...granted, no problem.

In 2017 Brian's professor sought genetic testing for all three of us. Brian's came back positive for 22q.11 Deletion Syndrome, we were both negative. None of us had any idea what it was, including the Professor!!...nor any of his GP's, dentist's, nor even the NDIS service provider support team he sees now!! What a lot we all had to learn...and what an eyeopener!!

By moving, we learnt that community support was vital, and to get known in the local community was up to Brian himself. To do this, Brian became involved with the local Men's Shed, he helps deliver Meals on Wheels, and attends the flying club occasionally. He's known at the local shops, medical centre and chemist, and is well known amongst the neighbours. He has tried Sailability, Coast Care and Tidy Towns, but found those too physical for him since his weight has escalated too far for comfort. Covid has dampened things down in the last 15 months too.

Brian's weight has spiraled as well as his anxiety and we think he is depressed at times too. He doesn't want medication for this and we can't force him, he takes enough meds as it is to keep his calcium and thyroid under control...but it is a concern all the same 

Brian is a very gentle soul, kind and too generous at times. He has difficult speech, often starting in the middle of a sentence leaving us guessing what he's trying to say. We often have to interpret for him. His vocabulary is quite limited...he is very illiterate, he can read the easy stuff OK, but not always comprehend so well and his writing is abysmal! 

Brian does his own housework, with occasional reminders to re-do the toilet! He does his own washing and I insist on ironing his t/shirts for him, otherwise he'd be quite happy to go out looking homeless!! He mows his own lawns and puts petrol in his car. We make sure his bills are paid and we look after his money. He has his own debit card which we top up weekly. He mostly cooks his own or buys his meals from the supermarket. If we are having something special for dinner, like lasagna or a baked dinner, he will come to us. Occasionally he cooks for us; he does a great beef stir-fry, and beautiful pizzas with lots of veg on top! My main worry is his lack of food storage knowledge...he can be a bit slack as to what's in the fridge and how it's stored!

He has a few favourite TV shows; he likes Megastructures, Mash, Big Bang Theory, Car restorations shows, or any movie with storms, earthquakes or any such disasters. Oh, and he still sees his Sydney school and workmates occasionally. He's been on a few cruises too, with a workmate. 

We don't know what the future holds for Brian. All we can do is to look after ourselves the best we can, so we can look after him for as long as possible. As we approach our eighties, it IS a worry for us. Thankfully Brian's three siblings will step up and his financial management will be taken over by them and we are confident they will make sure Brian is well taken care of as needed.