The rollercoaster adventures of parenting three kids, dealing with disability and mental health.

Monday, 20 October 2014

Virgin Australia

How do you take a 50kg wheelchair user to the toilet on a 4 hour Virgin Australia flight. You drag or carry them is how!




My father-in-law booked us (him and his wife plus the five of us) on a lovely and much needed break to Fiji. He still had some outstanding Virgin Australia tickets from the trip to Bali we missed out on when hubby broke his ankle last year. So Virgin Australia it was, Sydney to Nadi, and SoftiTel on Demerau, a resort style hotel close to the airport to minimize traveling, swimmers in the suitcase.

After our recent experience traveling to Alaska and Vancouver Island with two wheelies, we knew the ropes. Hubby rang both the hotel and the airline to check and double check they were aware and prepared for wheelchairs. Also, at the time of our booking (in the first half of this year) we had one child using a wheelchair, but now we have two, so best to notify everyone of this additional set of wheels.

Hubby rang Virgin Australia and started a complicated game of phone tag between Virgin Australia Holidays and Airlines. No one could quite work out whose responsibility our complicated request might be.  

Eventually someone with some sort of authority assured us that yes, we could take the wheelchairs to the door of the plane (thanks Kurt Fearnley!) and yes, there would be an aisle chair available. We requested and received seats close to the toilets and all of us would be seated together.

We headed off to Sydney Airport on Saturday (28/09/2014) for our four hour flight to Fiji (VA 183 from Sydney to Nadi). We headed off early because we have learned from experience that checking in five people, including two wheelchairs, takes ages. We don't mind too much, it's part and parcel of our situation, and we lighten the mood by joking about it with the poor check in person who drew the short straw and ended up with us.

We were able to take our wheelchairs to the door of the plane where I then carried BooBoo (8 years old and 20kg) to her seat (4th row) and one of those skinny aisle wheelchairs took Beaver (13 years old and 50kg) to his seat. For those wondering why I carry BooBoo - she cannot sit safely in the aile chairs the airlines provide and well, she’s still light enough.

Of course, we were not seated together. Our wonderful cabin crew took pity on our 11 year old and got another passenger to move. All good.

Except two hours into the flight I needed to take the oldest to the toilet. So I asked for the aisle chair. Our lovely flight attendant Lynska went red as a beetroot and explained to me that, eh, there wasn’t one. Never had been.

I was stunned.

So, how am I meant to change my son?

Eh. You could change him in his seat?

I bloody well will not. He is a 13 year old boy who has recently lost the use of his legs and became incontinent. I will NOT put him through the indignity of changing his nappy in front of a hundred people.

There were no other alternatives, so I lifted him up and carried him. Well, dragged him. Can’t quite carry a 50 kg dead weight person in a narrow aisle. My bad.

Lynska was possibly even more horrified than I was. She immediately wrote out an incident report and promised to email it to HQ that very evening. She wanted to know the details of our return flight and she would see what she could organize for us. She was deeply embarrassed by the situation, and I thank her for that.

On the way back to Sydney, of course, the same thing happened. This time our flight attendant (unfortunately I don’t remember her name) didn’t really care. She did explain to me that aisle chairs are only carried on board on long haul flights. There never have been any aisle chairs on board on “short” flights – not even when it is very clear from the booking that a wheelchair-using passenger is on board.

She didn’t really get why I was indignant – until I asked her if I shall just let my son soil himself and his seat (knowing full well that the cabin crew also clean the cabin at Virgin Australia). Suddenly she saw my point that one of them teeny tiny fold up aisle chairs might not be such a bad idea.

I have since contacted Virgin Australia (via Twitter). They were “very concerned” and “very sorry” and would ring me back.

Haven’t got a phone call yet. Funny that.

Seriously, if my son’s dignity wasn’t involved in all this, I would be sorely tempted to let him shit is pants and see what happens…

Sunday, 19 October 2014

Meds

The benefit of empty gelatine capsules - I can make one brain pill (for Bipolar) and one pain pill (for neuropathy).




Friday, 17 October 2014

Last week in pictures


He was very very sick on Friday


So off to emergency we went on Saturday - and were sent up to the ward very quickly!


They started the Immunoglobulin (IG) infuse (IV).



Which caused some weird side effects


He was allowed to go home on Tuesday 


And lots of fatigue 

But he's perked up quite a bit!

Here we go again

We had our first meeting with the neurology team at Westmead Children’s Hospital this afternoon since the Immunoglobulin IV last weekend. The doctors were amazed at Beaver’s change. If I would describe our son last Friday the first word that comes to mind would be ‘ragdoll’. He had deteriorated significantly and was barely able to sit up. His swallowing was dangerously affected and the neuropathy had traveled up to his hands. There was no movement whatsoever in his toes or legs anymore.
 
Today he, ever so gently, kicked a tennis ball with his left foot for the dog. And he can slightly wriggle his toes.
 
 
I know, I know, he’s not exactly on a trajectory to represent his country in soccer, but hey. This actually IS a small miracle.
 
Anyhow, the neurologists are now quietly confident to diagnose Beaver as having picked up an inflammatory neuropathy somewhere along the way (possibly after one of those many infections from falling over). This is good news. No, this is excellent news. Since it is not inherent in his type of HSP this means his sister will not get this. It also means treatment is possible – and the IG IV should help him regain function. Possibly even be able to stand again and take some steps.
 
Now, how much function he regains depends to some extend on doing physio - stretches, strength exercises and some equipment like AFOs (Ankle and foot orthodics) and down the track a standing frame (his body will need to get used to standing again slowly).
 
The lovely Deepa, one of the neurologists at the hospital, rang the CPA straight away to request urgent physio for our son. The CPA rang me back some hours later.
 
They were exceedingly sympathetic to our story and what our son has just been through. But unfortunately, no, physio won’t be easy. They just don’t have enough physiotherapists at the moment, you see, and there are actually no spots available. None. And really, “what these doctors need to realise is that we are not an emergency service”. 
 
I see.
 
Physio could mean the difference between a 13 year old boy possibly walking again or not. The CPA is ‘not an emergency provider”, ok. 

But it sounds to me they are not a provider at all – since no physio seems to be available. None. At. All.
 
So what exactly is the point of the Cerebral Palsy Alliance?!?
 
Someone higher up the food chain will ring me on Monday to discuss options in further detail. I wish them luck.

Thursday, 4 September 2014

Justify

I am so sick and tired of the endless disability in-fighting. No wonder the disability system is such a bloody mess; we are way to busy to fight each other than to fight the system.

As the mother of kids with disability, I often find myself at the receiving end of the "people with disability (PWD) versus "parent/carers" competition.

For starters, I really hate the "parent/carer" issue. I am not a carer. In my books, a carer is someone who is paid to care. Its a job. I am not a carer. I am a mother. And I do what I do for my kids. My kids will be adults one day (I hope). Until then I will fight for them. Because, you know, its not about me. Its about the needs of my kids. We are not actually on opposite sides.

I am so fed up with constantly having to justify myself. 

Let me give you an example.

There is a Facebook page where you can upload photos of those annoying people who keep parking in disabled parking spots without a permit. The idea is to take a picture of the car which clearly shows the car is in a disabled spot, and then a picture of the windscreen without a permit. The hope is that by publicly "shaming" them, this behaviour will eventually cease. And before you ask, yes, it sometimes works, and sometimes doesn't. 

Every so often  this group digresses into a discussion over the rules and regulations of the permit and its use. It's not really what the group is all about, but it keeps happening - and it generally opens a whole can of worms.

Last week, someone commented on how she finds it "suspect" when someone pulls into a disabled car part and pops the permit in the window. Because, you know, "real" disabled people leave the permit in the window permanently. 

Except of course, there is nothing suspect about this. When I have my kids in the car and use the permit to park, I put the permit in the window. When I do not have my kids with me, for example, because they are at school, I do not use the permit. In fact, I am not allowed to use the permit. So I move it away from the windscreen. And then back into the window when I arrive at school to pick them up. Despite the fact that these very same people would probably murder me for having the permit up if I don't have the kids with me, it took quite a bit of convincing them that what I do is correct and legal.

The other night a woman had a right old go at "people parking in the disabled spot running errands while the disabled permit holder is left in the car". 

She was upset because laziness is not a disability. Too true, but I pointed out to her that we had had this discussion on the forum before and, most importantly, that in some states, including NSW where I live, this is perfectly legal, and for good reasons.

Let me explain.

I have two kids who use a wheelchair. Sometimes I need to pop into the shops quickly. Sometimes I park in the disabled spot (not always, only when there is not a closer one available). I then have two options. I can leave the kids in the car and dash in and out, and be done in 10 minutes. Or I can take both kids out - this means one wheelchair, help transfer one child into it and drive to a safe spot, then take out second wheelchair, lift second child into it, close all car doors, lock car, and  go to my shop. Then do the whole thing in reverse, which takes twice as long, if not longer. And that's if I use the manual wheelchairs - the powerchair has to be partially dismantled to get in and out of the car which takes significantly longer.

Surely it's in everyone's benefit if I can do these boring errands in half the time. And, you know, free up the space sooner. For some families there are health issues to, both for the parents (endless lifting, some more complex wheelchairs can weight 25 kilos) and the comfort and health of the person with the disability (some kids may spasm in cold or seize in hot weather).

I can go on about this. I won't bore you with it all. You may even feel that you have a different opinion, which is fine by me. Suffice to say that I pointed out on the forum that in NSW it is legal to use the permit as long as the permit holder is in the car.

But you should have seen the comments that followed. Again, I wont bore you with them. And I cant quote them to you, as the post has since been deleted. I was called "aggressive" and again accused of being lazy, of doing something illegal, of "stealing" a spot from a "legitimate" user.

Apart from the fact that they were plain wrong (one woman even posted the NSW rules which clearly showed this is legal to try and prove it wasn't, thereby only proving her stupidity) the comments were all really condescending. 

What it really came down to is that they were all comments along the line of "my permit is better than yours" because "I am a disabled driver" and you are not, its only your child". Ageist nonsense. My kids count just as much as a disabled adult. 

You can probably guess by how, this is getting really up my nose.

Because, really, I'm only in this disability stuff for the parking, you know. If it wasn't for the wonderfully disabled parking when I pop into the shops to buy some sparkling dancing shoes I would have given my kids up for adoption years ago. Grrrr....

Wednesday, 3 September 2014

Logical

Had word recently from Enable NSW. BooBoo's wheelchair has been approved. However, a second cushion cover was not approved.

You may wonder why we would want a second cushion cover.

Well, like her brother, BooBoo's bladder is, well, let's say somewhat unreliable. Our oldest's bladder has deteriorated now to full incontinence. We're talking neurogenic bladder, nappies and intermittent catheterisation here.

We keep trying with the undies. You know, use it or loose it. Train those muscles to strengthen and all that.

But it means we have many accidents. Plenty of spare clothes and wet undies. And nappy blow outs. A
nd wet pillow covers. 

And when you have a wet pillow cover it will start to smell. So it has to be washed. And dried. Which means we don't have a pillow cover for a few days. Which means BooBoo sits on an uncomfortable and sticky plastic and foam pillow.  Which is why we ordered a second pillow cover. 

Makes sense when you have continence issues no?

Unfortunately though, it turns out you cannot request a second pillow cover for a wheelchair unless you have a medical certificate from an incontinence nurse proving your in continence.

As we did not produce such a letter of confirming her incontinence we were denied the second cushion by Enable NSW. 

However  just yesterday I received notification that BooBoo has been approved for incontinence products by Enable NSW. Because, you know, the incontinence nurse at Westmead filled in the paperwork for this, certifying BooBoo's incontinence.

So I rang Enable. 

Still need to prove BooBoo's in continence for a second pillow cover with a letter from an incontinence nurse. Because we all have too much time on our hands it seems.

Logical, or what?!  

Friday, 8 August 2014

Gammy and Victoria

Last Friday we woke up to a sublimely sad story, which has captivated the Australian media and public.

An Australian couple reportedly left behind a disabled baby boy with his surrogate mother in Thailand, while taking home his healthy twin sister. There has been quite some controversy around this story since. There are conflicting stories as to when the boy's disability was diagnosed (4 months, 6 months) and whether an abortion was requested and by whom (the biological parents or the agent). The patents reportedly told they did not know of the boy's existence, a claim refuted by the surrogate mother. The story gathered a further twist when it was revealed that the biological father had a string of previous child molestation convictions, and there are now concerns about the child they did take home.

As soon as the story broke, outrage flowed freely. Everyone and their dog commented on how these people were unfit to be parents, and how horrible they are. There was plenty of sympathy for the Thai surrogate mother who decided to keep the baby boy and a crowd sourcing campaign took off almost instantly to help her fund some of the boy's medical bills. A number of opinion pieces were written about the exploitative aspect of surrogacy.

But bar some beautifully written personal pieces, the mainstream media has been noticeable silent on the disability angle of the story. 

I wonder why?

You see, as the story goes, the boy, called Gammy by his Thai mother, was diagnosed as having Down Syndrome (Trisomy 21) and a congenital heart problems at some time during the pregnancy. The surrogate mother claims she was asked to terminate the disabled boy and keep the healthy girl. She objected and carried both twins until their slightly premature birth. The biological parents then took the baby girl home - leaving behind the boy, who had by then been diagnosed with his heart problems.

It was the bit about being left behind in Thailand with his impoverished mother people got outraged about. Not the request for termination. At the very least they should have taken the baby home and put him up for adoption here. 

You know. Discard properly. Thoughtfully.

We now regularly screen for Down Syndrome in Australia. The reality is that most people then choose to abort their child if Down Syndrome is confirmed. Indeed, to many people, that is the very point of the test.

Do you know the percentage of pregnancies terminated after Down Syndrome is diagnosed in utero? It's about 95% (*)

As any parent of a child with Down Syndrome can tell you, they would be rich if they got a dollar for every time they were asked, as a casual aside "So, did you, eh, you know, did you know?" Generally followed by some mutterings of either "oh, well, bad luck" or "wow, you are brave" or something in that vein. 

Heck, I have three kids, two of which have a clearly visible physical disability, and I get asked constantly (even though there is not test for what they have, and if you need to know, the oldest was not tested, the youngest was, and was given a clean bill of health)!


Remember when you were pregnant? And people would ask you if you know if it's a boy or a girl? And then the next thing they say is "Oh well, as long as it's healthy". Your friends with a sense of humour might even mention things like "ten fingers and ten toes".
And there you have it.

As long as it's healthy.

As long as it's healthy it's ok. And by implication, if it's not healthy, well, then it's not ok.

Our fear of disability runs deep, very deep.

If you want to know how deep our feelings run about disability, have a look at this story.

Published in The Sydney Morning Herald the very same day as little Gammy's, was Tim Elliott's  interview with the president of the Australian Human Rights Commission, Gillian Triggs.

Triggs is introduced as "a woman of formidable intellect" with "an instinct for human suffering and the rights of the neglected". 

Except possibly the disabled, that is.

You see, after extensively describing Triggs' journey into discovering injustice in the world and her many achievements in the field of human right, at the end of the article, we suddenly hear how "not everything has gone to plan" in Triggs' life. 

In 1984, the Human Rights Commissioner gave birth to a disabled daughter, Victoria,  "as severely retarded as anyone who is still alive can be". Victoria was born with Edwards Syndrome, (also known as Trisomy 18). There is no doubt that this is a very profound disability, and most children with Trisomy 18 are stillborn or live only a few hours after birth. Triggs explains: "... the doctors kept saying 'Just leave her in the corner and she"ll die.' So, it sounds terrible, but I'd look at Victoria and think 'Well, you're going to die, so I'm not going to invest too much in you.' But she didn't die. She had this inner rod of determination, and she simply refused to die.'

Eventually Triggs took Victoria home and found a family who took over her primary care. When asked if this arrangement bothered her, she said: "Yes, because you have a child and you expect to look after her. But in the end I simply made the judgement that I would rather put my time into my other children and family, because I also never believed she would live to that age."

I can only hope Victoria was loved by the family who took over her care. Victoria, by the way, "simply refused to die" for 21 years.

According to Gammy's mother, she was led to believe his biological parents did not want him because he was going to die soon anyway (presumably from his heart condition). At some point the parents parental made a statement to the media long those lines, as did a woman who worked for the surrogacy agency.

So it seems if your are disabled, and your life expectancy is short, your life is not worth living. Disposable. Useless. You can simply be left behind to die.

Even a dedicated human rights activist thinks so. 

Well, I respectfully disagree.

Whatever happened to "unconditional love"?

The one thing we can all give our children, regardless of our occupation or intellect or manners, is love.

Indeed, if life is to be short, should it not at least be full of love?

What else is human life all about?




(*) study by associate professor Jane Halliday, a public health genetics expert with Melbourne based Murdoch Children's Research Institute. Released in 2008, based on figures from 1986 to 2004. Figures are similar across the Western Wold: 90% in NZ, 92% in the US, 93% in the UK.  

Tim Elliott, "Meet Gillian Triggs, the woman taking on Immigration Minister Scott Morrison", The Sydney Morning Herald, 1 August 2014.