A snapshot in time – somewhat blurry and out of focus

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.

Dreaming about the NDIS

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. 🙂