Crystal Anniversary (Holey Quacamole)

wedding

Fifteen years we’ve been married today,
flying by in a wonderful way
we’ve had ups, we’ve had downs
we’ve had smiles with the frowns,
the roller coaster ride of a life you might say.

_____________________

ps,. I updated the limerick (you may remember it from our 12th anniversary – hahahaha – how time flies)

Book Review: ‘Cracked’ by Clare Strahan

9781743316030

Do you remember Clare Strahan from Literary Rats infamy? Well this wonderful lady has published a damned fine YA novel called Cracked and yes, it is everything it’s cracked up to be ;) and I am nowhere near the age of the target audience #sigh

Cracked is a coming of age novel about a girl called Clover (the name says it all) traversing those treacherous roads from ages 15 to 17. Clover considers herself a bit of a ‘freak’ (and so do her friends) because of her unusual upbringing. She has been raised by her single mother (result of a one night stand with a man who then quickly disappeared) with some unconventional ideas. They live in a household with no computers (and no facebook!) and as Clover says: ‘I was a Steiner-freak who ate home-baked bread and brown rice and didn’t have a television’.

Continue reading

Wrong Side of Something

imgp1640

Wrong side of something

A bed has sides, for to
wake up on the wrong side of

my clock is alarmed, as am I,
amnesia of sleep trickery wins the day

my breakfast in bed is missing
in action, feared dead

my coffee is black, deserted
by milk, awol – again

my toast is burnt – a consequence of stubborn
refusal to budge

my dog is late for the great outdoors,
the kids are late for the bus

and I am too late,
she cried, as she waved her wooden leg.

__________________________

Malasian Airlines Flight MH17

smallWADbothribbons

My thoughts are with the family and friends of those who perished in the tragic crash of the Malaysia Airlines Flight MH17.

It is particularly devastating to hear that a number of the passengers killed were heading to the Melbourne International AIDS Conference in Australia, including pioneer and leading researcher in the field, Joep Lange (former president of the International AIDS Society).

Many years ago I worked in a HIV/AIDS Unit (in my role as coordinator of Hepatitis C Services for injecting drug users). It always struck me how much tragedy was ever present in this community of individuals directly and indirectly affected by HIV/AIDS. Yet, they powered on courageously with their fight to reduce disease and discrimination. I had the greatest admiration and respect for the people I worked with and met in this area.

The fight continues to this day, however the issue has become less of a priority for many in Government (hovering in the background as if all the problems had been solved because of advances in treatment). Only recently the conservative led Government of Queensland stripped a huge amount of funding from HIV/AIDS programs in the State. But things are still very grim throughout the world for the millions (34 million plus) affected by HIV/AIDS and there is no room for complacency.

To lose these researchers and workers in the global HIV/AIDS field is just horrific and so unfair.

To lose anyone in this act of carnage is horrific.

RIP

________________________________________________

Guest post by Helen Ross (A Very Close Shave)

The lovely Helen Ross (poet, author, blogger) has contributed a very personal tale of a close shave.

helen.ross_1398565946_65_______________________________

A Very Close Shave by Helen Ross

In May 2005 my husband and I embarked on a round-the-world trip with another couple. There were a few legs to the journey (Brisbane-Singapore; Singapore-Paris; Paris-England; England-Canada; Canada-Alaskan passageway cruise; return Vancouver, Canada; then home to Brisbane via LAX airport). We never made it past England but we eventually got back to Brisbane.

On the morning that we were due to leave for Canada I spent the last of my UK pennies and pounds at Heathrow airport. ‘Yay! I need room for US money.’ Michael, my husband, scoffed a bread roll for breakfast and, a little while after, complained of heart burn. His cheeks were rather ruddy. As we had arrived early, he was happy to sit for a while.

Though the food hall was a distance from our departure gate, the other couple wanted to walk there. As my husband is more of a stroller than an Olympic walker our friends went on ahead. We had seen many golf buggies buzzing around the airport so figured we could hop on one if Michael got a wee tired. He reached for his cabin baggage (which wasn’t very heavy) and struggled picking it up, complaining that it felt like a ten ton weight. Michael looked a little peaky. I endeavoured to get a wheelchair to wheel him to the departure lounge but was curtly informed that it had to be booked and none were available. Thankfully a cart was whirring by.

Settled at the departure lounge Michael looked grey and clammy. “You’re not having a heart attack?” was my reply to his ‘you look like death warmed up’ complexion.

“No. It’s just indigestion” was his feeble reply. Hmmm, I thought.

On board Air Canada, Michael strapped himself in, took a few breaths, and then suddenly declared that he had to go out for fresh air. Whilst passengers were still boarding, I informed a flight attendant that we had to go outside the cabin doors as Michael was suffering from indigestion. After feeling better, we again boarded. I even arranged for the Flight crew manager to see if we could upgrade to a business seat to improve Michael’s flight comfort.

After sitting for a few minutes, Michael again felt unwell, extremely weak and struggled breathing. Again we parked ourselves outside the cabin doors with flight crew intermittently checking on Michael’s welfare. Finally, Michael requested medical assistance. We hadn’t realised that mica ambulances (mobile intensive care) are based throughout Heathrow, so paramedics arrived within two minutes.

After a routine check-up the friendly (yet professional) paramedics thought it best to take Michael to a hospital for further tests. I went back into the aircraft to collect our cabin baggage, and informed our friends that we would catch a later flight and would meet them later in Canada. They sat, shocked. Though I had previously asked Michael if he was having a heart attack, I had resigned to thinking he was suffering from indigestion.

So off we went for an unexpected ride through the streets of London. We arrived at a nearby hospital, but after a few tests Michael was wheeled back into the ambulance bound for Royal Brompton Hospital (later we found out that Royal Brompton is the largest specialist heart and lung centre in the UK). A cardiac sister from the hospital hopped aboard. The sister didn’t divulge too much, but thought there was likely to be an artery blockage. I was still expecting to arrive in Canada that night.

Michael sucked happily on a green ‘morphine’ stick, declaring “green sticks are on me” as the streets of London flashed by. But I wasn’t in a sightseeing mood. On arrival, Michael was transported to theatre whilst a paramedic assisted me with our cabin bags. Deposited in the deserted waiting room, I sat dumb struck, tears falling down my face.

After approximately 2½ hours doctors came to tell me that Michael was okay, and that they had put in a number of stents. The head doctor informed me that if Michael had got on the flight he would have been carried out at the other end in a wooden box. The next day I found out that Michael had died twice on the surgery table, being brought back to life with the paddles (defibrillator).

Back home in Australia, one woman told me that if it was her husband complaining of heart burn, she would have told him not to be a baby and get on the plane.

Yes, a close shave indeed.

______________________________________

Thanks Helen :D

I am so glad your tale has a ‘happy’ ending #phew

Note: My internet connection is shocking at the moment and won’t be back to normal until the 19th of July – so my apologies for any delays in responding to emails and blog comments.

Our Troubles with Sleep: The Autism Files

 

Our Troubles with Sleep: The Autism Files

Many children and adults with Autism Spectrum Disorders (ASD) have trouble with sleep (60-80%). They can have trouble getting to sleep, staying asleep and sleeping for a decent amount of time. They can have trouble with sleep-walking, sleep-talking, teeth-grinding, thrashing about, nightmares and night terrors. The list goes on.

My son, who was diagnosed with autism at the age of 3, has had trouble with sleeping all his life (he is now nearly 14). He did sleep well for the first two nights after he was born when we were both in hospital. But on the 3rd night (when my milk ‘came in’ as they say) the crying began and my baby would not sleep like the other newborns. The nurse kept coming into my hospital room to see what the problem was. All the other newborns were sleeping soundly; they seemed to only cry when they were hungry. After hours of disrupting the ward the nurse took my baby to the neonatal ward so that I could get some much needed sleep.

Those early days were a sign of what was to come. It’s not uncommon for parents to have problems establishing a good sleep pattern for their babies and toddlers, but eventually most children sleep through the night without waking their parents. This was not the case for our son. He had trouble sleeping for more than an hour during the day, without waking up crying, and he would wake several times during the night. Sometimes during the day when he was having a nap he would wake, not just crying, but screaming as if he was being murdered.

We took our son to a sleep clinic for babies and toddlers, as well as the paediatrician to rule out physical problems. The nurses in the sleep clinic helped us develop a good sleep routine; the paediatrician diagnosed reflux and prescribed some medication which helped settle the baby. But still the sleep disturbances continued.

I went to bed every night expecting to be jarred awake with the sound of crying or a scream. Without fail I would be woken and I would get out of bed, zombie-like, to see what was wrong. He would settle back to sleep after some strokes of his head and a few cuddles. It was like he wasn’t really awake at all during the whole episode.

My son’s sleep disturbances took a toll on our family – my husband and I and our young daughter. Being woken most nights is very disruptive to the sleep patterns of all members of the household (unless there is a very heavy sleeper who never gets woken by noise).

I was beyond tired in the daytime and eventually I also was diagnosed with a sleep disorder. I spent a night in a sleep laboratory hooked up to wires and electrodes which showed, (surprise, surprise) that I wasn’t getting enough deep sleep. The doctor looked carefully at the graph that tracked my sleep stages and raised his eyebrows, saying ‘this is very interesting’. But anyway, that is another story, possibly involving chickens and eggs, and other philosophical musings.

My son’s sleep did improve significantly when he was about 9 and our family savoured peaceful nights. We began to get enough sleep ourselves and the anxiety and feeling of dread associated with night-time began to fade away.

But then we had our son’s first school camp when he was twelve. He was away from home for 3 days and nights of outdoor ‘fun’ – you know the drill – ropes courses, raft building, swimming in a dam type thing for school children. He loved it and he hated it and his anxiety went through the roof for several months after the camp. Along with the anxiety came our enemy, sleep troubles. Yes, waking during the night returned and decided to stay for the duration.

Arrgghhhhhhh!

This time I’d had enough so we went to the paediatrician and got a prescription for Melatonin. Melatonin is a hormone found naturally in humans and other animals (made by the pineal gland in the brain) which regulates the internal body clock of sleep and wakefulness. Studies have shown that melatonin is effective in improving the quality of sleep in children with ASD and those with intellectual disabilities.

We give our son melatonin every night, about an hour before his bedtime. His sleep improved straight away with the use of melatonin and his mood improved during the day (we assume as a consequence of getting enough sleep). He still occasionally shouts out or talks loudly in his sleep – about an hour after he falls asleep – and I go into his room to see if he is alright while settling him back to sleep. Sometimes he yells out and comes hurtling out of his room in great distress (sleep walking). He rarely remembers these episodes of what could be called sleep terrors. But, these days he nearly always settles by the time I go to bed at around 10.30pm and he sleeps soundly for the rest of the night. On those occasions when we have run out of melatonin his sleep problems have returned.

This is my families experience with a child who has ASD and problems with sleep. Other families have it much worse (eg. children who only sleep a couple of hours a night) and others have ASD children who have only minor sleep problems.

The reasons for the sleep disturbances vary. They can include sensory issues, melatonin regulation by the body, anxiety, stress, hyper-vigilance, hyper-activity, cognitive overload, and other factors.

The strategies used to treat the sleep disturbances also vary and parents may need to trial different techniques and have huge amounts of patience before they get any success. Some beneficial strategies have included the use of weighted blankets for children with proprioceptive issues, relaxation exercises and music for those with high levels of anxiety, a good predictable sleep routine, melatonin and other medications. I will discuss these issues further in a separate article.

One thing we know for sure is that good quality sleep is essential for well-being in all humans and increases the ability to concentrate, to feel relaxed and to be mentally alert.

____________________

Note: In Australia you need a prescription for Melatonin but not in the USA. Beware of products that mention melatonin in the name but which do not contain the active ingredient (eg., homeopathic melatonin).

Note: Photo by Lisa Crook

Timing

This is another of my close shave poems (but when I think about it the shave was too close – more like a fatal shave). This poem is about a friend of mine who died a long time ago now – strange how people always think they will get a second chance at life.

___________________________________________

Timing

His inebriated reverie
featured a change in fortune,
a magical
pivot
materialising, in the nick of time,
as he teetered on the edge.

He had visions of narcan for an overdosed lifestyle,
something to snap himself back from the effects
of a depressed, nervous system.

An apparition,
an angelic stranger, providing resuscitation.
Chest compressions sparking a cracked heart,
warm breath of someone else’s life
galvanizing his lungs for another go,

but the light in his eyes was skeletal,
and his timing was out.

His time had run out.

__________________________________________________