Chris and doctors

It's been a while since my last effort, but inspiration has finally grabbed hold and ideas are forming.
There's another 'Mum' story which I'd like to share soon, but bigger than that, the travel bug is biting again. Planning has commenced for a Grand Tour of Europe in 2013. The only trouble: planning is cheap, saving is hard.

But back to this blog. Chris' school needed a new update - and this is what popped out.

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Chris and doctors

When Chris was around four years old, he had a series of middle ear infections, each of which required treatment from our local GP. Up until that point he’d had quite a happy relationship with Dr G, but it didn’t take too long for Chris to associate the discomfort of an ear examination with any contact with the man – and their relationship was soured for several years.

We knew things had reached rock bottom one day at the surgery. While we waited our turn, Chris was relaxing on the floor flicking through a telephone book (his favourite reading material) and his brother played in the toy corner. Chris had his back to the hallway that led to the treatment rooms and was oblivious to the comings and goings of the various doctors and patients, until Dr G came out and called for his next patient.

Chris was on his feet in a flash and heading for the door, refusing to come back until Dr G and his next patient had left the room. Only then did he return, making sure that the door was closed between them.

This happened three times in all – and had the folk in the waiting room chuckling at his stark reaction. It was almost enough to give the poor doctor a complex.

Fortunately they repaired their relationship a few years later, bonding over a quick game of ‘cars go brrm’, and Chris has been as good as gold with him ever since.

Not surprisingly, we are grateful that his general health is excellent. The only time he sees a doctor these days is when the visiting cardiologists from the Royal Children’s Hospital review him. Chris has had several open heart surgeries, the last when he was nineteen, and will require lifelong reviews – and possibly future surgery.

He had a visit just last month – and he impressed me how much of the routine he recalled – and more importantly, accepted calmly.

Even though he paced around the waiting room and poked his nose into a few rooms he shouldn’t have, he was relatively patient – for him.

First he was measured by the nurse. Getting his feet together and his heels to the wall was a bit of a challenge, but we managed it. Then he was weighed, having to stand very still while the machine settled on a weight. Again a challenge, but Chris handled it well.

The part he usually finds hardest is the ultrasound, but this time he was almost relaxed. He lay still for about twenty minutes while the technician applied jelly to his chest, taking images of his heart from multiple angles.

Next was the ECG – and Chris calmly allowed the technician to apply the sticky dots to his body, lying absolutely still while he took the readings. Then, when we finally went in to see the specialist, he whipped off his shirt without being asked, to let him listen to his chest with the stethoscope.

I am confident that Chris understands that he has had operations and remembers his recent trips to Melbourne for MRIs. He’s even asked when he’ll be going back to hospital and if he needs another operation.

Not for a very long time, we hope.

He has certainly come a long way from running for the door whenever a doctor approaches – even a friendly one.

A near miss in 1956 - or fourteen hours to Melbourne

This is number three in the series of family recollections.

In early October 1956, not long before the Melbourne Olympics and long before the days before cheap airfares and dual lane highways, STD calling and mobile phones, my parents Ross and Lorraine drove to Sydney in their Simca Aronde car for two weeks holiday.

The months before had been difficult. Lorraine had finally fallen pregnant again after a miscarriage the year before - but this pregnancy had its own share of problems. Even though her GP was monitoring her very carefully, the threat of a miscarriage was always present. Plus Lorraine was plagued by thrush and the kind of morning sickness that lasts all day.

However, their holiday had gone smoothly and their hotel,The Hotel Imperial in King’s Cross, had lovely harbour views. They’d been entertained by the Exners, a Swiss couple whom Ross knew through business, and were nearing the end of their time there

Lorraine woke the morning of their planned departure to discover she’d begun bleeding - not heavily - but enough to be significant. The hotel management called for a doctor, who immediately prescribed bed rest for the next three days.

On further consultation, the doctor felt that the long, bumpy drive back to Victoria was too risky. Ross and Lorraine agreed. The prospect of complications somewhere out in the Mulga, or at least between small towns, was too frightening.

It was decided that Lorraine would fly home – a very expensive option in those days – and Ross would drive back to Geelong alone.

But how would they manage it? They only knew the Exners in Sydney and even if they could get Lorraine to Mascot Airport, how was Lorraine to manage the trip home from the other end?

Their salvation came in the form of a fellow hotel guest. Mrs Brady, the mother of an old friend of Ross’ happened to be staying at The Imperial too, and promptly volunteered her daughter’s assistance to get Lorraine back to Geelong.

Thelma, the daughter, had served in the AWA as a driver during the war, so Ross knew Lorraine would be in good hands.

So it was finally worked out: Ross would hit the road at around 5am, the Exners would see off Lorraine at the airport at around nine, Thelma would meet Lorraine at Essendon Airport and take her to her parents’ place (around 50 miles away) to await Ross.

That turned out to be the easy part. Ross still had to drive non-stop from Sydney to Geelong, a distance of around 550 miles (880 km).

It was not a pleasant trip. There had been flooding around the Holbrook/ Little Billabong area which had left the highway full of potholes. He recalls that hitting them at 70-80 mph instead of thirty was fairly nasty - and was murder on the car’s suspension.

There was one bright spot on the trip. It was still early morning and he encountered a lone driver in a Ford who was driving at a similar pace. They drove together in loose tandem for several hours; the Simca pulling ahead on the curves, and the Ford catching up on the hills, but both making very good time. A kind of open road cameraderie developed between the two drivers.

Ross recalls watching the Ford breeze past at a petrol stop and being surprised when the driver turned back a few moments later to invite him to breakfast. Ross was tempted but felt unable to accept.

He never saw the car again.

He drove on alone: his imagination playing out non-stop ‘what- if’ scenarios, worried sick about Lorraine reaching Geelong safely, and only stopping for ‘pee and petrol’ along the way.

He arrived at Lorraine’s parents’ house at around 7pm, exhausted after a solid 14 hours behind the wheel, relieved to find her safe and well.

Thankfully, there were no more bleeds after that first one and Lorraine only had to endure the usual inconveniences of pregnancy – which in her case was several more months of morning (and afternoon) sickness. She managed this by consuming vast quantities of Dexsal and Perry Mason novels.

The morning sickness finally stopped during the last trimester and Lorraine delivered a healthy baby girl the following March – me - and did it again three years later in 1960 (Lynda) and in 1965 (Tracy) with two comparatively easy and morning sickness free pregnancies.

The GP, Ian Vaughan, who had nursed her through that first fraught pregnancy, wasn’t on duty the night she delivered me. In fact he only managed to be present for baby number three. That night he was heard to say something like. ‘It’s another girl – just like the other two.’

1965: My birthday, and a new baby

This is the second in a series of recollections I'm preparing for my mother.

All through the latter part of February 1965, my mother’s small hospital suitcase stood just inside the sliding door of our lounge room, and every morning without fail I checked to see if it was still in place.

If it was missing, then I would know that Mum was at the maternity hospital – and that our new baby was finally on its way.

The only morning I didn’t do this was 4^th March – my 8^th birthday.

I guess my mind was on other things.

It wasn't until after I saw Dad in the bathroom and he said “Happy birthday. Mum’s bag is gone.” that I even thought of it.

Of course, being eight years old, I had to go to check it out for myself – and sure enough, her suitcase WAS missing.

But there was no baby yet.

Over breakfast Dad told us that he'd taken Mum to Baxter House overnight and he would have more to tell us after school.

In spite of this earth-shattering news, we still made time to open my birthday presents. I only recall one present that day – although there must have been others. It was a my new school’s tie pin, which I was pretty pleased with and wore on my lapel.

I was such a dag – but you have to remember this was the mid-sixties…

I went to school as usual, but had to catch a different bus at the end of the day, because Lynda and I were to stay with family friends, Gordon and Cynthia Hall at their home in Highton (a suburb across town).

Coincidentally, it was the also their eldest daughter’s 16^th birthday that day. Natalie and her sister Michelle attended my school and were given the task of bringing me home from school with them.

It was all quite an adventure for an eight year old.

School really dragged that day and I could hardly wait to find out whether I had a new brother or sister. And I wanted details!

I’d been fascinated by the whole notion of babies ever since I’d known Mum was pregnant and had plagued her with all sorts of questions. For instance, I knew that ALL babies had blue eyes when they were born – and I was anxious to see this phenomenon for myself, since we all had brown or hazel eyes in our family.

You can imagine my frustration when we were told that there was no news yet. I thought I was going to burst. What had Mum been doing all day?

We joined the extended Hall family in their celebration of Natalie’s birthday over dinner that night – and I think that a cake was produced for me too, which was a bit special. But the most memorable thing about that meal was that it was the very first time I’d ever eaten corn on the cob. Freshly picked and slathered with butter. Yum, sensational.

It is still one of my favourite foods.

Lynda and I stayed up late waiting to hear from Dad, but bedtime came and went with no word. Since tomorrow was still a school day, we finally went to bed, trusting that there would be news in the morning.

Thank heavens, there was.

Cynthia Hall woke us the next morning bearing hot chocolate, news and a small gift for us both. The news was that we had a brand new baby sister. Her name was Tracy Kim and she’d been born at 11:30pm – just inside my birthday.

Woo hoo!

Oh the gift? Bizarrely, a troll doll each. Mine had red hair and Lynda’s had white. I think I still have mine … somewhere.

In those unenlightened times, a woman's confinement was taken quite literally. New mothers were scarcely allowed out of bed for toilet privileges for a week or more after a normal delivery. Children were not permitted to visit their mothers and I suspect fathers were barely tolerated. They certainly didn’t venture inside the labour ward. Not then anyway.

For us the only direct means of communication with our mother was to write her a letter.

I wrote and I asked her that burning question. What colour WERE our new baby’s eyes?

Mum wrote back, telling us that it was hard to see her eye colour since she was sleeping so much, but that her eyes seemed to be very, very dark. She also told us how tiny and perfect her hands and fingernails were.

Naturally we were desperate to see this for ourselves, but it was nearly two weeks later before we finally met our sister.

Tracy did not disappoint.

I don’t remember too much about her homecoming, except that she was a very good baby and her eyes were never, ever blue. They were almost black right from the start. But she was utterly perfect and we all thought she was gorgeous.

Four year old Lynda announced that she was the most beautiful baby ever. Ever modest, Mum said that every family felt the same way about a new baby. Lynda replied. “Yes, but ours really is.”

You can’t argue with that kind of devotion, can you?

A post script:

A few months later I really earned my big sister stripes. It was winter and Mum was outside putting the washing on the line. She slipped over on the wet grass, and broke her upper arm.

She was in plaster for what seemed like months, probably because she continued to breast feed and didn’t have an ounce of calcium to spare for mending bones.

Basic tasks like showering and dressing were all very challenging, and caring for an infant was even worse.

She continued to breast feed and it was an ongoing battle to keep her cast from resting on Tracy’s head as she fed. Feeding was one thing, but she couldn’t bathe her, carry her safely or even change her nappy – so I became her right hand (or left in this case), at least after school anyway, while our grandmother handled the cooking and cleaning side of things.

Excellent training for when I had my own children twenty-something years later.

Chris' duckpond adventure

I'm currently working on a series of family recollections for a scrapbook for my mother, who recently turned 85. This is one of them.

It was just a few days before Christmas 1995. The boys were seven and Andrea was about to turn three. My mother and father had arrived from Victoria the day before and I wanted to show them a local beauty spot. I also needed to pick up the ham and turkey we’d ordered from our local butcher, and since the kids had gone slightly feral, I thought I could kill three birds with the one stone.

Everyone piled into the Tarago and we drove to the nearby Punchbowl Reserve. As its name suggests, it is a shallow bowl-like depression and it has been beautifully landscaped. It is very popular with families.

There is a glorious rhododendron garden, sweeping lawn, a duck pond, barbeque and picnic facilities and a recently refurbished play area. I anticipated we would take a pleasant stroll over the lawn to see the ducks, planning to finish up at the playground and then back home via the butchers.

Easy.

Or Not

Everything was quite straightforward until we reached the duck pond, which is half way across the reserve. We didn’t even have a chance to point out the ducks, let alone feed them, when Chris ventured one step too close to the edge and slithered right in.

The pond isn’t excessively deep – perhaps waist deep – IF he’d not floundered around. But by the time I hauled him out, he was completely soaked up to his neck and covered in mud and pondweed.

Thankfully the weather was fairly mild and we stripped him off at the water’s edge but the issue remained; what could he wear back to the car?

I had Nick give him his woollen jumper and Andrea gave up her hoodie for the cause. The jumper was a straight swap since the boys were of a size, but the only thing I could do with the hoodie was tie it around his waist like a little apron or some kind of native lap-lap (since the hood swung between his knees). Modesty was satisfied – sort of – but he looked quite bizarre.

That sorted, it was time to bundle up the wet clothes and get home asap.

But Nick had become bored and decided to explore the picnic area while we were occupied with Chris. The next thing I knew was that he was doing a pretty good mountain goat impression – leaping from one picnic bench up onto the table, down again and over to the next bench. Easy.

Until he missed - and barked his shin against one of the benches.

Now all of our attention was on Nick who, not surprisingly, was yowling in pain.

So then we realised that Chris had wandered off in the direction of the playground. He was making a beeline for the slide and we were too far back to stop him.

You can imagine the looks he was getting from the other children as he climbed bare-arsed up the ladder and lowered himself onto the top of the slide.

I should point out here that this newly refurbished playground had some quite modern features for the time, such as rubberised matting under the swings – and a ROLLER slide.

We could only look on in horror as he bumped down over the cold metal rollers on his bare bottom.

Frankly, it was some kind of miracle that his bits weren’t pinched between the rollers. I suspect he didn’t enjoy the experience, since he made no attempt to go back up.

We finally hustled him and the injured Nick back to the car (where this photo was taken) and agreed that we should get home as quickly as possible, what with Chris half naked and Nick moaning and groaning.

Nick: It's sore, It's sore.

Me from the drivers seat: All right, we know.

Nick in the back seat: It's sore, It's sore (and so on)

Me trying to keep calm: All right, keep quiet about it.

Nick: It's sore, It's sore ( etc)

Andrea in the middle row: Mum, he's not keeping quiet about it.

Nick: It's sore, It's sore.

Andrea (with some ire ) We know it's sore. Now shut up.

Which you have to admit is pretty funny coming from someone who's not quite three years old.

It's just as well we didn't have far to drive.

A brief story about Chris.

My son Chris attends Giant Steps Tasmania, an autism specific school located in Deloraine (a rural community 50 km away.) It was founded in 1995 by a small group of very dedicated and politically savvy parents of autistic children and Chris was an early enrolment, starting in its second year. It had a shaky start financially, but is now growing and extending its enrolment to adults and pre-school programmes. It will never be big, but it delivers a quality program and it came along at just the right time for us. I will always be grateful for that - and for the bus the school finally bought so we no longer had to car pool to get the children to and from school.

Chris was a full-time day student until he turned 19 (in 2007) and then was offered a place two days a week with the fledgling adult group.

This group has grown this year, and we were lucky to apply for and receive additional funding for him to attend three days a week. He spends the rest of the week at the Day support program his group home runs - and comes home for the weekends.

One of the many imaginative (through necessity ) fund raisers Giant Steps introduced was called Sponsor-a-Child and over the years it has brought in several thousand dollars.

Twice a year the students' parents are asked to write a short update about their child's progress and it is sent out to the sponsors in the form of an open letter (with an accompanying photo).

I usually find myself scratching my head to find something to write about, but inspiration came a little easier this time. Here it is - I hope you enjoy it and if it aids in your understanding about living with autism, that's a bonus.


Chris in 1998. A rare shot of him engaging with the camera

Chris in 2010. You can see his Lightwriter on his lap. It's a voice output device and he wears it on a strap around his waist.

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Sponsor a child update May 2011

Chris spent the extended Easter break at home this year, and we took the opportunity to have his hair cut and to refresh his wardrobe.

His father took him for the haircut and I drew the short- ish straw: buying the clothes. Not my favourite job after we lost him in town when he was nine years old. But that’s another story.*

The haircut

When Chris was very young we used to put off cutting his hair until it was so long he could barely see through his fringe. Haircutting was such an ordeal for him – and us. He couldn’t stand being draped with the nylon gown, seeing his reflection in the mirror, hearing the sound of the scissors close to his ears or having to sit still while the hairdresser cut his hair. These are not sensations that bother a neurotypical person, but can be very distressing for the Autistic individual.

Inevitably there were some rather lop sided cuts over the years, but these are rare now. He tolerates being draped, so long as his hands are left free. He still looks away from the mirror to avoid his reflection but he finds the buzz of the hair clippers surprisingly soothing. Mind you, cutting around his ears is not for the faint hearted – but his hairdressers have learned to be quick.

This week’s haircut was happily quite painless. I’m told even the hairdresser was smiling at the end.

Clothes shopping

Chris came home with rips to two pairs of pants and his pyjamas, so all needed replacing. He and his brother were of a size not too long ago. But Nick is taller now and can no longer try things on for the both of them. As much as I would have preferred to shop without him, there was no avoiding it this time. I would have to take Chris shopping.

But where to go?

Chris finds going to large stores terribly exciting, but I don’t like taking him there for that very reason. He is distractible at the best of times, but department stores put him into sensory overload with their sheer size, massive displays, bright colours, noise levels and plain busy-ness.

We needed something quieter, less stimulating for this expedition to work, so I opted for a local men’s wear store, which we visited at a quiet time of day.

What a difference it made! Not only did I not have to search the racks for the right style and size, but the staff could not have been more helpful to us. When I explained that Chris cannot manage a zippered fly, they searched and found two elastic waisted trousers that turned out to be perfect for him.

So half an hour later we left the store with everything on our list. It might have cost a few dollars more than a chain store, but the experience was almost … dare I say it, a pleasant one.

When he returns to Giant Steps after Easter, he’ll look very sharp indeed.

* I'll tell that story one day.

Random notes for the New Year.

It's been a few weeks since my last post , so this is simply a catch-up blog.

Christmas was very quiet for me. Vaughan was in Queensland with his fiancee, Andrea spent the day with Rob's family, so it was just the boys and me. We did manage to get together for a meal - all of us- on New Year's Day. So that was quite nice.

I received a gift card for a new wallet, a baking dish, DVDs and some other gift vouchers for Christmas. The wallet matches my new red Italian handbag beautifully, so I'm very pleased with that.

I didn't have to work after Christmas, so I added another week of leave and had two weeks off in all. It was nice but in retrospect I should have taken three.

It took me all of the first week to wind down but I was starting to get into the groove by the end of the second week. By that last Friday I'd decided I could really get used to long sleep-ins, hours spent reading and lazily pottering about the house - but it was not to be and I had to front up to work on Monday.

Gahhh.

Chris has been home for the last three weeks and he returns to his group home tonight. Except for some minor obsessing over when he could open his Christmas presents and his desire to spend a LOT of internet time spent looking for and at YouTube clips, it has been nice having him around.

When I picked him up the day before Christmas Eve, his housemother mentioned that he's very independent there, often makes himself hot drinks and peeling potatoes for meals etc. Funny, when I suggested he do these things here, uh ... he wasn't the slightest bit interested. He ran a mile in fact. LOL Whatever he is, is not silly.

I received some good news about his special needs funding for when school resumes in February. We applied for and received an increase in funding and he will be able to attend Giant Steps Tasmania's Adult programme (It is an Autism specific School) three days a week instead of two. He will then have two rather than three days at St Michael's more generic Day Support programme. I think that it will be good for him.

Nick FINALLY got his licence and it is a huge load off everyone's mind. I've noticed a marked increase in his confidence and independence since that day. In fact, he offered to do the supermarket shopping for me this week - and I was happy to let him. He's going to receive a job seeking allowance too, which will put a few dollars into his pocket while he's looking for work. I hope that he will soon have a job in his chosen field of graphic design.

Andrea and Rob are now in their own unit. They moved in just before Christmas. She's on the lookout for an apprenticeship, but is swinging between becoming a chef or a baker. I wish she'd make up her mind. She needs to get her driver's licence too. I've offered to take her out on some drives, but she's not taken me up on that yet.

We've been watching TV coverage of the floods in Queensland over the last few days. It has been a terrible business, but whole communities are rallying behind the massive clean up efforts and that is quite heart warming to see.

Tasmania was also affected - but to a far lesser extent - and we appreciate that we have been very lucky. Coastal towns to the East, a few towns in the NW and one local suburb were flooded, but most of Launceston been left unscathed.

There are some changes at work coming. The upshot of it is that I could work shift work if I want. It would involve weekend work which is a minus, but there would be more annual leave, shift penalties and time in the day to do other things.

I don't know how it will shake down, but I'm going to try to keep my options open.

One last random note. I unexpectedly found out that my illness two years ago might be covered by an insurance policy I had for Death Disability or Trauma. I'm in the process of making a claim - and there may be some kind of pay out! Fingers crossed anyway. My mortgage waits with bated breath!