I don’t know whether to laugh or cry at this time of the year, when I see “Autism Awareness” everywhere. I would really, really, really love to have just five minutes of one day where I’m NOT aware of Autism. … Continue reading
“People don’t understand Autism, they have this preconceived idea of what it is, and it’s not that at all”.
This is a comment which I’ve frequently read, coming from a mother who identifies as being autistic (her choice of words), and who has autistic children. Their lives might look slightly different to what we would expect – there are differences in perception, in the way the world is viewed, in the way that issues are dealt with. This mother just wants the world to (rightly) accept her children as they are, and to enable them to be themselves in their expression and participation in the world around them. She doesn’t want ‘Autism’ to mean anything other than that.
“People don’t understand Autism, they have this preconceived idea of what it is, and it’s not that at all”.
This is a comment which I’ve frequently read, coming from an exhausted mother, who has at least one autistic child. Her child is non-verbal, aggressive, self-harming, incontinent, smears feces for pleasure, and does not sleep for more than four hours at a time. His behaviours and high needs have led to the mother (who is now a single parent) having no friends, no income other than Social Security, and no break from her child. This mother wants the world to know (rightly) how hard it is to care for children like her son, and that it is something that requires community support financially and otherwise. She doesn’t want ‘Autism’ to mean anything other than that.
Who is right? Is it really a matter of Black or White? Is Autism really a spectrum, with such extreme differences inwardly and outwardly?
I’m seriously thinking of starting a petition. A petition that will be sent to members of the medical profession all over the world, asking them to make a huge change, to allow a paradigm shift, to re-examine “evidence” and “the way it’s always been done”. And of course that’s exactly why there’s no point in sending that petition – because the medical profession has a long history of not being open minded, of not only wearing their own blinkers but insisting that everybody else wear them, too.
It seems to me, however, that there are a lot of people unhappy with the word ‘Autism’, and many are also unhappy with the word ‘Spectrum’. My personal opinion is that if you’re naming a condition that resembles ‘normality’ (whatever that may be) at one end, and complete helplessness at the other end, what’s the point of giving it a name? If you have people whose only difference is a flair for the creative, or a unique talent that gives them joy, or simply a different way of thinking about things, do they really need a label? How can that same label then be applied to someone who is in constant danger if not supervised, who will require 24 hour care and support for the rest of their lives, and is unable to engage in the community without extreme assistance?
Can we just take a look at the variety of issues that people are presenting with, and examine them from a new angle? A view that takes into account genetics, environmental factors, medical conditions, abilities as well as disabilities, and most importantly, the impact on the person themselves? Then use the resultant information to provide help and assistance to those who really need it but aren’t getting it, and stop trying to thrust it on those who don’t?
Maybe then we can stop arguing about Autism and Neurodiversity, ability and disability.
Because both points of view exist, and both points of view are right.
Last time I posted about our entry into the world of NDIS, and how I was waiting for our planning phone call. Well, the other day I got all excited because I had missed a call from the National Disability Insurance Scheme, but it turned out to be not for BuddyBoy, but about my application to have my eldest daughter receive assistance. I had submitted the requested medical report from her psychiatrist, and also sent in the psychological evaluation, and the letter from the paediatrician, confirming at age 15 that she did indeed have Asperger’s. Apparently they thought she might have outgrown it now, given that this was five years ago, so they were ringing to ask what her daily life looks like, to determine if she’s eligible for assistance. I’ll be notified in a week or two of their decision – so nice of them, isn’t it?
So we’re still waiting for that magical phone call for BuddyBoy. While we’re all waiting (and please don’t hold your breath while we are), let me give you a view into what our world looks like. I can’t describe it to you from BuddyBoy’s point of view, because he can’t tell me what it’s like inside his head, and my psychic powers only extend so far. I don’t think it’s a very happy place in there though, given the number of bruises, scratches and bite marks he inflicts on himself.
As BuddyBoy’s parents, we’re Exhausted. Tired and sleep deprived obviously, but this Exhaustion goes beyond that. We’ve been trying everything we could think of, and more things than we could afford, for the last six years, to make BuddyBoy’s world a happier place for him. We’ve failed. We would get small glimpses of hope, before everything became much worse. We’ve learnt not to have hope, as the pain of it being stomped on repeatedly was becoming unbearable. As the years have passed, his life has become more limited and harder to cope with, and he’s only eight, so we are literally living in dread of what next year will bring, let alone the next ten.
Our other children have lost their parents. We do not have the time, energy or money to parent our other children properly. We spend hundreds of dollars on weekly repairs and replacements for things that BuddyBoy has broken. We are so tired that we are often snapping at the other children when we should be hugging them, helping them with their homework, and spending time with them. They spend most of their time on their computers, because we can’t be ‘bothered’ telling them to get off – at least they’re quiet. All of their extracurricular activities have long been cancelled, because not only can we not afford them, but we don’t have the stamina to drive them there. One of us always has to stay with BuddyBoy, leaving the other exhausted parent to play chauffeur. We simply couldn’t do it anymore.
Our marriage has shipwrecked several times, and if it wasn’t for the now daily support workers coming in, it would have sunk long ago. The support workers are finally allowed to care for BuddyBoy without one of us being present – we had to get special permission from the government before that could happen. Go figure. So this Sunday, to celebrate my birthday, our entire family (minus BuddyBoy) will be going out for lunch. The last time this happened was when BuddyBoy was 1 year old. I’m looking forward to it, yet at the same time I am feeling guilty. Guilty because “our entire family” does not include BuddyBoy.
I have been unable to find a respite home that is willing to take BuddyBoy for a night. Please read that last sentence again and then think about it. I have contacted our local respite home, another one an hour’s drive north of here which caters for more ‘needy’ children than our local one, and another one that specialises in the tough kids, two hours drive south of here. None of them are able to cater for him with their current layouts and supports. They all said they would have to look into what changes they could make, how they could add enough supports and staff, and work out exactly how to get government permission for all of that, and they would get back to me. Thankfully, I wasn’t holding my breath.
We can never, ever relax. We are always on duty. I cannot hang the washing out without one of my children, or a support worker, being in the same room as BuddyBoy, while I’m outside. We can’t all go and watch TV – one of us needs to be on BuddyBoy duty. I can’t cook his daily bacon and leave the kitchen while it’s cooking (I’ve become very good at timing bathroom breaks). If we do, the consequences can be disastrous. Like tonight, when he was once again climbing on the kitchen bench, and managed to smash a glass on the floor. And then jumped down from the bench and landed on the glass. We think it’s not in his foot anymore, but he won’t let us look. Or two weeks’ ago, when he was playing in the kitchen cupboards and broke two of them, so now my dishes have to live on the bench. We have a lock on the fridge that he can’t open (yet) but that doesn’t stop him from trying.
Every day, I spend at least two hours picking up pieces of food, paper and broken items from the floor. I have to mop the kitchen floor at least once a day as BuddyBoy likes to throw food on the floor, stomp on it, rub his hands through it, and then dance through the kitchen on hands and feet. Over the last week he’s been really hungry, so I’ve had to mop at least twice. We throw out at least as much food as he eats – he likes to rip and break food, and we can’t exactly withhold all food from him. He likes to tip cordial and juice bottles out to watch the resultant pools of liquid, or watch them go down the drain. He will snatch other people’s food, unpack the fridge if he can get access, and his particular favourite is to crumble cookies and squash fruit or eggs.
Every day, I have to mop BuddyBoy’s room at least once. It’s usually because he’s urinated on his floor and bedding (and that means a load of washing everyday) but sometimes it’s because he’s done a poo in there. Today he covered it up with one of his continence mats before he squished it. It obviously worked because neither his support worker nor Daddy realised it was there – it was only when Mummy came home and saw the poo on his knuckles that the jig was up.
There are days when I honestly think he doesn’t care about me, that he is totally oblivious to my presence, and that he’s unable to ever connect with anyone on an emotional level.
Other days he gives me smiles and even hugs, he lets me hold him and talk to him, or he’ll come and sit on my lap.
There are times when he is calm and quiet, happily watching YouTube. Times when he is loud and boisterous while playing chaseys with one of his support workers.
There are many, many times – hard on the heels of the other ones – where he is screaming, biting himself, throwing things, hitting his iPad, attacking his little brother and breaking anything he can reach.
We never know which BuddyBoy we will have at any moment – we prepare ourselves for the Worst and make the most of the Best while we can.
It is 1am as I start typing this. I’m often awake at this time – I’ve started going to bed once BuddyBoy is asleep, as I find it hard to sleep with the level of noise that he delights in. We are now sleeping in the living room (two rooms away from BuddyBoy’s room), and despite the extra distance, despite the cacophony of the ancient air conditioner we run at night, and despite my ear plugs, I still cannot sleep with the noise that he emits.
It’s a very happy sound – a high pitched squeal that any soprano would be envious of, at a decibel level that would rival that of a jet engine. He’s actually relatively quiet at the moment – he’s not doing his usual circuit of jumping off the windowsill, running to the door to slap his hands on it, then running onto his mattress where he throws himself down with a happy yell. He’s not tearing his magazines or his bedsheet while singing a nursery rhyme, in between knocking hopefully at the door in case one of us feels like releasing him from his night time ‘prison’. Thankfully, he’s not smearing poo either, although I cannot vouch for his floors being dry right now. He’s simply huddled under his sheet, squealing as loudly as he can at irregular intervals. One of his favourite activities.
Before I attempted to go to bed around midnight, I was filling out the ever-present paperwork. This time it was for the NDIS – the National Disability Insurance Scheme that Australians are being ‘rolled out’ on. For those Australian Autism parents who are reading this, you will know all about it and can skip ahead to the next paragraph. For the rest of you – the NDIS is a brainwave for a national ‘insurance’ that is meant to assist people with a disability to become more independent, and live more inclusive, productive lives. It is government funded (aka additional taxes on the working class) and is hopefully going to assist people to be able to participate in society and employment opportunities. Whether it will actually do this remains to be seen. The process was trialled in a few areas to show just how many ‘bugs’ there were, and is now slowly being brought in across Australia.
Our area is being rolled out as from May this year. Which means that in January, we received a phone call to confirm that BuddyBoy was eligible for the scheme. As he was receiving assistance from the Department of Health and Human Services, he was already on the list and we just needed to confirm a few details. For my other children with disabilities, I had to request a form to be sent out, which I then needed to have a medical practitioner complete to state that despite the previous expensive assessments and paperwork which the NDIS would subsequently ignore, my children did indeed need assistance. I only bothered doing this for my eldest child as I simply don’t have the energy right now to fight this battle for more than two children.
BuddyBoy is now alternating between laughing hysterically and coughing. I’m not sure which is more concerning. Although my ears are thankful for the reprieve.
The paperwork required for the NDIS can be quite daunting. Many people who have a disability and are going through the process unassisted, have found it difficult to not just navigate the process, but also to translate their needs into the bureaucratic jargon that is required. If you don’t know what to ask for, and how to phrase it correctly, you won’t get it. Simple — and money saving for the government. Which leaves a lot of people in a situation that’s worse than they were in before, and some have even given up as the sheer amount of stress and energy required became too much for them.
Thankfully I thrive on a challenge (those who know me are laughing at the understatement in that) and so I’m preparing my paperwork ahead of time. I thought it might be interesting to share that journey with those of you in Australia who are also going to be ‘jumping through the NDIS hoops’ by blogging about it as we go through it. Plus, it gives me a written record that I can show the media and our politicians if I have to lodge a complaint about the lack of assistance we received. 😊
I won’t be writing about what the NDIS process involves, other than how it is affecting us personally. If you’re in a similar situation to us, you might be able to get some ideas that you can add into your plan, or how to phrase your requests. Even if you don’t, you might just get a good laugh out of it, or feel thankful that your own situation is vastly different to ours!
My next blog post will be about our current situation, prior to NDIS. I can guarantee you that you will be shaking your head at the ridiculousness of our situation.
In the meantime — it’s now past 2am, the singing has come to an end, the giggling has been stifled, and I am listening to mumbling interspersed with the occasional shriek. At this rate, I should be able to get to sleep within the hour. Goodnight. 🙂
Warning: For those who like to live in the Neurodiverse paradigm that seems to be so popular these days, please don’t bother reading any further. This is our reality with Autism – a reality that is dirty, gritty, painful and … Continue reading
I was scrolling through my Facebook news feed, and came across this article from the Huffington Post:
The Ones Left Behind
How do our governments and workplaces support, or fail to support, those of us who care for vulnerable children?
I started thinking about all the financial implications that having a child with a disability can have, and the huge impact this has not just on the child and their family, but society as a whole, and even our environment. The impact will obviously be somewhat different depending on the level and nature of the disability of a child (and eventually, the adult), but please let me share what it is in our case.
- I am a stay at home mother. I have not contributed to the workforce since I first became pregnant, and had not planned on doing so in a full-time capacity until my youngest child was in high school. Since having BuddyBoy, even that has become impossible – he will need full-time care for the rest of his life. I am not able to find myself a part-time job while he is in school, as we have had to pull him out of school due to his disabilities. When he was at school, there were quite a few days when I had to go and pick him up early, or he went to school really late. Even a very supportive employer would not appreciate my constant absences. Hence, I am not able to pay taxes or put money towards my retirement – quite a problem given that by the time I officially retire, there will not be a pension for me to retire on.
- Because BuddyBoy is now at home, my husband has had to reduce his work hours. I cannot pick up my two schooled children, as BuddyBoy often refuses to wear clothes, or get in the car. He will also not wait happily in the car while we are parked at school. And I certainly can’t get out of the car with him to pick up my children from the school door. My husband has to pick them up instead, and he also drops them off at school. Reduced hours equal reduced income, and he cannot apply for any promotional opportunities as they are full-time. Obviously this has hugely affected our immediate finances – to the point that we qualify for welfare payments, and are hence a further burden on society. It also means less money to put toward his retirement savings.
- We have four girls and two boys. Under ordinary circumstances, we would have had two girls to a bedroom, and two boys, meaning we would need at least a four bedroom house. However, due to my girls’ disabilities, sharing a room poses an awful lot of problems (for them and their siblings), so even that has been difficult in the past. BuddyBoy cannot share a room – not only is he a danger to others, but he often doesn’t sleep (like last night when he was still wide awake at 4am). Our eldest daughter is living in a granny flat on our property, so we can still look after her and help her, but we still need six bedrooms. A bigger house equals a bigger mortgage, which has been a huge killer for us financially.
- We generate a lot of waste. BuddyBoy used disposable nappies until he was six, at which point we switched to cloth nappies. Cloth nappies don’t clutter our waste disposal systems as much, but they use a lot of electricity, water and detergents to keep clean. He likes to spread his urine and feces, so I have a daily load of sheets to wash. He also loves to destroy things. Over the past year alone, thanks to BuddyBoy, we have had to dispose of tonnes of shredded paper, 2 pairs of pants, 4 t-shirts, 3 media players, 5 portable hard disc drives, 1 laptop computer, 2 DVD players, countless ornaments / keepsakes, far too many books, 4 mattresses, 2 bed frames, 3 iPad covers, 4 iPad screens, 1 iPod, 1 iPod cover, 1 rug, 4 sheets, 3 towels, wallpaper by the bagful, several pieces of crockery, too many toys to count, 1 table, several DVDs, two window flyscreens and one door flyscreen. We are still using the broken chairs, couches, cupboards, etc that we can’t afford to replace. Our yard is littered with broken fences, retaining walls, garden statues, pots and plants that he has destroyed but we haven’t yet disposed of. And for the record – I don’t keep a written tally of what he’s destroyed, and I am not ‘blaming him’ – I am stating a simple fact.
- We also throw away a lot of food. BuddyBoy reacts to a huge number of foods and other substances, so the range of foods he can eat is limited. Unfortunately he also has major sensory issues with food, so he will often pick at it and throw it on the floor, and then it goes into the compost. Some foods he will not eat, but he likes to mash – like bananas. So we have to hide them, and often forget that we’ve got them, and then they end up in the compost too. My kids each have different sensory issues, so there’s no such thing as cooking one meal for everyone, regardless of how much I would love to do that.
- We are unable to fully support the school that our children attend. We do not have the finances available to be able to participate in every fundraiser or event that the school hosts. We are also not able to physically attend all events, as one of us has to stay at home with BuddyBoy – depending on his behaviour at the time, sometimes both of us were needed at home with him, so the other children have missed out. Even though I do not work, I am not able to volunteer my time at school as I have to be at home to look after BuddyBoy. I also miss out on valuable connections with my children’s teachers – this is particularly unfortunate for my Aspie daughter who is trying to cope with a hectic school environment and could use more of my support.
- My children do not want to have children of their own. My neurotypical daughter used to say she wanted to have ten children. Now she does not wish to take the chance that she might have a child like BuddyBoy, so she has said she will never have any. Obviously she might change her mind, but the reality is that society needs to have children. Children are consumers who turn into tax paying wage earners. Taxes are what runs our society. If we don’t have enough children who are able to grow up to pay taxes, there will be no more funding for the arts, for sports, for social security, for Medicare. If you haven’t thought about the implications of this before, watch the movie Demographic Winter for some eye-opening facts. We also need workers to perform the jobs we take for granted – not just Rubbish collectors and janitors, but also defense personnel, nurses and doctors, teachers and farmers. With a growing population of citizens who require care, this could turn into a huge problem within a very short time.
- On a personal level, we are obviously broke. Broke from paying for all the broken items listed above. Broke from paying for various treatments, therapies, drugs and anything else that was meant to make BuddyBoy’s life (and ours) easier, more pleasant and sometimes just plain livable. Broke from buying food that costs more money because it’s ‘special’. Broke from buying a huge variety of clothes in the hope that he may wear one of the items (as well as replacing the ones he rips just because he can). Broke from having to buy heavy-duty goods and equipment because anything standard gets broken immediately. Broke because we’re always trying to find something that might engage him in an activity (other than breaking things). Broke from driving 2.5 hour trips to see doctors who prescribe medication that he reacts to. Broke because we can’t buy regular Nurofen because he reacts to the ingredients, so we have to have it compounded and pay $50 instead of $5. Too broke to afford therapy that may or may not be able to help him. The sort of broke that we will never be able to recover from, unless we win the Lotto in a big way. Guess we’d better find the money to start playing.
There are days when it all just gets too much. When it’s just too hard to watch my son mutilate himself time and again. When I really don’t have the energy to make it through another three hour meltdown of … Continue reading