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

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.

Thursday, 24 July 2014

Six Months

Pretty much from one day to another, our 13 year old son could no longer walk.

So, what do you do? You ring your service provider to inquire about a wheelchair of course.

Now these guys know our boy. He started therapy there when he was maybe four or five years old. They know the way he walks, they know his quirks. They KNOW him. I explain to the intake lady that Beaver can suddenly not walk anymore.

- Yeah, so he will need to be seen by an Occupational Therapist, who can then script a wheelchair.

- Ok, and then...

- Then we put the application in with Enable for funding...

- How long will that take, roughly?

- Oh, from application to delivery, can be up to about 18 months. Depends on the urgency. We'll see what our OT can do, they can make it clear this is quite urgent.

- Ok then. So, when can I see an OT?

- Well, the current waiting list for our OT is about six months.

- Six moths?!

- Yes, sorry, six months...

Six months to see an OT, who will measure his legs, fill in some paperwork, send it off to Enable, who will take ages to decide and fund and deliver, in maybe 18 months. 

Six months to just see an OT. That's not six months to get him a wheelchair. Just six months to see an OT.

Six months! 

Six?!?! 

What am I expected to do with him in the meantime?

Diagnosis - 2014, the Big Setback

2014 was always going to be a difficult year of big changes. 

We just hadn't quite appreciated how big they would be.

All three children were starting at new schools. Beaver was off to High School, and was glad for it, as the last two years of Primary School were unpleasant to say the least. The small independent school we had sent the children to had gradually been changing, and I felt our two special needs children were not really welcome there anymore. When you get a sense everything is a "management problem" and you spend lots of cash on fees and special lessons and aides and their education does not advance, even goes backwards, you know something is not working. I was taking the kids to an outside reading program called "MultiLit" and our oldest advanced a year in reading age in just one term! So we decided to send BooBoo to the local primary school where she can be part of the local community and we spend our money on MultiLit and private tutoring instead. As it turned out, our sensitive little Possum was not really happy at school either (apart from his classmates, who were a super bunch) and decided to follow his sister to the local school for his very last year of Primary. Always the strategic chess-player, he also worked out that this was good preparation for going to the local High School next year. And there is of course always Skype and MineCraft to keep him connected with his old buddies....

By April, all the kids were settled into their new schools. Possum and BooBoo took to their local school like ducks to water,and even Beaver was starting to feel comfortable in the Special Support Unit (for kids with mild to moderate intellectual disabilities) at his High School. The only issue was his discomfort in using the toilets - grubby and far away, only reachable after navigating a throng of rowdy kids, so he tended to hold on too long and had the odd accident.

Things were getting easier.

We should have known better.

We noticed Beaver's gait changing in early April. This is not an unusual thing. Every time he has a growth spurt, it takes his body a while to "catch up" and his walking deteriorates. We didn't think too much off it. He certainly was growing rapidly.

Then he got a blister on his toe. A nasty blood blister, which kept growing and got infected. It turned into a pressure sore which needed specialist care. Towards the end of April Beaver needed to stay off his foot completely. Luckily we managed to get hold of an old wheelchair from a friend of ours so we  were not entirely house bound. School was off, though, as most of Beaver's school is housed in old buildings on a sloping site - including his Support Unit!

After rest and specialist care, the toe improved. But Beaver was not getting back on his feet easily. He seemed to have lost lots of muscle, and his balance seemed have gone missing. We bought him a walking frame and started a program of exercises to get him walking again.

At the same time, we were still tweaking his Bipolar medication. Beaver was stabilizing, but there were some serious side-effects to be dealt with, most notably significant weight gain.  We trialled a new medication, and the day after we introduced it, Beaver lost control over his bladder. We took the medication off, but the incontinence remained. 

All this made alarm bells ring and our psychiatrist decided the neuro-genetics team needed consulting. 

They came, and they did not like what they saw.

Some eyebrows were raised, some brows were furrowed, and some tests ordered.

Two days later Beaver went to bed shivering and shaking, as if he was in shock. The next morning he woke up and fell out of bed. He had lost control over his left leg.

We made a video and send it to the neurology team. Within days Beaver had an MRI of his brain and spine under a general anesthetic, a bladder ultrasound, a nerve conduction test. And then some.

We learned the meaning of some new words. Degenerative. Peripheral neuropathy. Demyelination. Neurogenic bladder. Intermittent self-catheterization.   

Thursday, 20 February 2014

Diagnosis 2013-2014


Then, very gently but unmistakably, puberty hit. And with it came a whole new set of acronyms.

Before you become a parent you have certain ideas about life. Then, you have kids, and the process of reassessing starts. And then your kid develops “issues” and you can reassess some more.

We have always favored what people consider a hippie lifestyle. You know the one. Vegetarian, organic, fairtrade, all natural. So how did we end up with a child medicated to the hilt? Ah, parenting…

Puberty hit, the hormone household is thrown upside down and sideways. Our kids turn into cranky monsters while their brain rearranges itself. Normal. Ok. Something every parent deals with – and in our quiet, introspective moments we think back to our teenage years and have to admit to a certain divine retribution. 

But wehen your child’s brain is already mixed up differently, puberty can bring along some extra challenges.

Cue the arrival of Anxiety, Obsessive Compulsive Disorder and Autism Spectrum Disorder (of the “previously known as Aspergers” variety). It was full on, but it was what it was. Then, things got really tricky.

Beaver has spent his primary school years at a small independent mainstream school. We were made very welcome there, and he was happy. Until puberty hit, and the school started changing.

As the kids got older, his learning difficulties became more obvious. His different behavior and interests made him stand out more and more. He started to disengage from his classmates, and his classmates from him. Where he had some contact before (especially with girls, but they now became a sub-group one could not possibly be seen talking to) he was now increasingly isolated, both socially and academically. He had no friends at school. At best, the kids ignored him (sending him on errands to get rid of him for a bit) at worst they pestered and bullied him (throwing food on him, telling him to “go home and die”). He was being difficult. He was being annoying. But he was just lonely and trying – in all the wrong ways – to reach out.

At the end of year five, he tried to drink some poison “because everyone would be better off if I was not here mum” and was diagnosed with depression. He was put on anti-depressants and things got a bit better, especially when he made a friend, a girl also on the spectrum who joined his class in year six. But by the end of year six, things fell apart again.

He was not happy at school, where he continued to be ignored and bullied. He was attending an out-of-school reading programme where in one term he progressed his reading age by a whole year. It made us question what our school fees were actually achieving – he was not learning, he had no friends, and he was desperately unhappy.

Last November, after a manic weekend I will not quickly forget, I took him to the emergency department at the children’s hospital. He was diagnosed with Bipolar Disorder – and we are still trying to get his medication right.

He left the school to go to the support unit at a nearby High School. He lost his friend (her parents clearly felt he was no good company for their daughter) and we are still struggling to control his illness. We have come down from the mania and have seen glimpses of him well again. But we are still not there, and now, mid February, he has still not been to high school for more than a few days.

I question my firm belief in inclusive education and wonder if the stress of being different helped to tip him over the edge. We have kept his sister in the mainstream (although we pulled her out of the independent school and she now attends a lovely little public school in walking distance from our house) but she’s altogether of a different character. However, the moment she gets isolated or bullied I will reconsider. Beaver feels very safe and secure at the support unit he attends now, and his self esteem is slowly improving because he is not constantly feeling like the slow one, the dumb one, the odd one out…