We’ve made it to 2018. That is quite a big achievement if you think about it – and I know many of my friends feel the same relief and amazement that they’ve managed to hang on for another year. The … Continue reading
Our BuddyBoy has an irregular sleep schedule, and as a consequence, we are usually sleep deprived. His bedroom is right next door to ours, and while we wear earplugs to sleep and put a blanket behind our door, but we still hear him quite loudly. There have been numerous occasions when we’ve finally managed to get to bed at 1am, only to get up again at 3am because of the increasing noise that he is making. Some of those times we’ve also had to clean up poo and give him a bath without trying to wake the other children, but that’s a whole different story!
I work at my desk in our bedroom, and there have been times I’ve had to send hubby (in the living room) a text message, asking him to come and distract BuddyBoy so that I could get out of our bedroom. We can only let BuddyBoy in when he’s fully supervised, so that he doesn’t shred the papers on my desk, or try to flood the bathroom. Both our rooms are also located right by the front door, and there have been quite a few occasions where we could not get into or out of the door (nor could support workers), as BuddyBoy would be having a ‘moment’ in the hallway and we couldn’t get past him.
BuddyBoy often doesn’t like the noise the other children make when they come home from school, or if they are in the kitchen / dining area and talking loudly. He will start to get agitated, and if the noise continues then he may progress to self-harming. It doesn’t happen all the time, but it’s something we’re constantly aware of and try to avoid. Over the past two years, we’ve often had to ask the other children to go to their bedrooms, in order to accommodate his sensory issues. The more severe of the behaviours that we struggle with, have also meant that our youngest in particular was not safe in the same room as his older brother. As a result, we’ve had very little ‘family time’ and we often take it in turns to spend any time with the other children (when we have the energy to do so).
Our other children struggle with trying to accommodate BuddyBoy’s needs, and yet still be able to live in our house. We went through a phase where he decided that nobody was allowed to open the fridge, turn on the taps in the kitchen, use the toaster, and so on. We had to literally lock him into the hallway and his bedroom, so that we could eat. The alternative was to restrain him in the kitchen while the children tried to get their food. Having to watch their brother being restrained, and biting himself, is not a lovely scene.
This is why we’ve thought for the last year that it would be ideal if we could have an extension built, which would enable our needs to be met, as well as BuddyBoy’s needs. If we could put a bit of distance between his bedroom and ours so that we could sleep, we would be able to function much better. If he had an area that he could play in, where the other children wouldn’t aggravate him by making noise, he would feel happier. If we could actually have dinner with our other kids, without making BuddyBoy upset, it would be a huge achievement.
We have previously asked Child Protection if they were able to assist us with funding this (nope), as well as asking the NDIA (ditto). After far too many sleepless nights, we came to the conclusion that if we couldn’t get regular sleep and be able to function in our home, we would have to relinquish BuddyBoy.
It was not an easy decision, and one we never thought we would make. Our other children do not want BuddyBoy to live elsewhere. He wouldn’t want to live elsewhere. We don’t want him elsewhere. Yet what other options did we have? I made the phone call, which was not something I ever want to go through again, but Child Protection didn’t want to talk to me about taking BuddyBoy. We spent two months trying to get anyone in the department to even talk to us, during which time I had a breakdown and ended up having to leave home for a short while to recover.
I contacted our state and federal Members of Parliament, who contacted Child Protection and the NDIA on our behalf. Unfortunately, this still didn’t solve our sleepless nights. We finally decided to contact the media, as a last ditch effort at trying to keep our family together.
We were absolutely amazed at the subsequent outpouring of support. Several people have reached out to offer their help, either by working with our boy, offering to paint his bedroom with murals (yes, please Jake!), making phone calls to ask others to help build an extension, or offering their services. Many made suggestions for varying therapies, medical treatments and protocols to try – and I will be doing a post on those soon! We have once again started to have hope – hope that we can keep him at home, and hope that we may be able to help him feel better.
The general public’s generosity has been astounding. The GoFundMe account that my good friend Jen set up, is at the $20,000 mark, thanks to some extremely generous people out there. Thank you to all those who donated or shared the page! We had a local builder, Glenn from Glen Loddon Homes, volunteer his time and services to draft up a plan for an extension and give us a quote. The first option we discussed was very roughly estimated at $130,000!
We have come up with a second option which we are hoping will be cheaper, and we’ll hopefully have a price estimate within the next week. My supportive group of friends (also mothers of children with autism) has been busy contacting local tradespeople to ask them for their time and support. Jason from Roof Smart has volunteered to help out with the roofing requirements, and Greg Smith Electrician will have a look to see how their business can help with the electrical side of things. We are still hoping we will find a plumber and any other tradespeople who might be happy to volunteer their time. Glenn is happy to do our project management for us, so we can try and keep the costs as low as possible.
Hallelujah for the kind people out there! It doesn’t look like there will be any assistance forthcoming from any government department, so we will be trying to do some more fundraising over the coming months. We’ve been offered some assistance with fundraising by the fabulous Ron Crowe from Kiwanis – a local group who specialises in helping kids in need. People have been making phone calls to see if any building materials could be donated (thanks Tania!) and also helping out with the fundraising side of things (yes Lee, you will be needed!)
Where to from here?
- We have advocates following up on any possibility of funding from government departments or other organisations. I will do another post later in the week with more details on our new advocates and NDIA news as well.
- We need to do lots of fundraising. I am going to be meeting with Ron, Tania and Lee to discuss various options and get the ball rolling.
- If we can get tradespeople to donate their time, that will keep costs down. Also, if we are able to have any materials donated or provided at a discount, that would make a huge difference. Phone calls are still going on in this area.
- If you are able to help, either with fundraising ideas, actual fundraising, contacting friends who might be able to lend a hand with building, or anything else you can think that might assist, please let us know! My beautiful friend Adrina has kindly agreed to coordinate efforts on our behalf, so please get in touch with her if you want to help.
- Share our news – feel free to forward this blog post onto others and post it in your social networks.
Once again – a great big THANK YOU to all you wonderful people out there.
I did what I never thought I would do. I let the general public into our lives, to judge us and condemn us and hate us. Surprisingly, the general public didn’t do any of those things. They supported us, they sympathised with us, and even reached out to us, to let us know they were praying and sending healing thoughts our way. Many offered suggestions, doctors to contact and therapies to try. A great many even donated money – often families that are living with Autism and struggling financially, yet they wanted to help us.
My close friends on social media have also been incredibly supportive – and without their strength, I would have given up the fight a long time ago. There are times I have felt ashamed as a mother – that I wasn’t good enough, that I should have been able to cope with everything far better than I was, and that I should not admit my failings to my friends. Yet they have ALWAYS been there. They cared for me, they loved me, they checked in on me when times were really, really bad. I knew that when I had dark thoughts, there would be someone there, someone who understood all too well what I was going through, and who would hang in there with me.
There are some who aren’t like that. Some who judge me because I have reached out for help (repeatedly), and in the course of that I have shown the public what autism can be like. It is not a gift in our household. It is a way of life for my daughters – something that makes them possibly different, but certainly not less, than anybody else. Yet for my son, who has the same label, it makes his life a daily struggle. For sharing that struggle I am judged and persecuted, I am attacked verbally and shunned physically. Not by those who don’t understand Autism – but by those who say they understand Autism all too well, because they identify as being Autistic, and/or by having children who are autistic.
I am judged because I rejoiced when my son was finally able to pick up a crayon properly and drew on his bedroom walls. Years of trying, hoping and wishing that one day he could draw, made the colourful walls seem trivial. Yes, I would love to have a beautifully painted bedroom for him. The reality is that I can’t. He has pulled the wallpaper off, leaving no primer on the walls, and with many poo stains and now crayon marks, we will most likely need to replace the walls before we can even think about painting. Besides – he prefers it like this. Is that wrong?
My son used to sleep on the floor, on the disgusting carpet that covered his bedroom. We ripped it up (the poo stains would not come out anymore and the carpet was over 20 years old), and had lino laid so we could keep it clean for him. He slept on the hard lino floor – shunning any mattress I tried. I bought an organic rug that didn’t smell so he wouldn’t react to it, and that had the soft, plush feel that he liked, and he slept on that. We then finally managed to get him onto a mattress to sleep. Three mattresses later, we graduated to beds with a mattress on top. Two bed bases and another two mattresses later, we had run out of beds, mattresses and money. He was still not using sheets – he would rip them off the bed if we were lucky, and rip them apart if we weren’t. We were fortunate and received some funding for a demo model mattress that the local psychiatric unit uses, and he has not been able to destroy. Some time ago he started tolerating sheets on his bed – he would still rip them every other day but it was progress.
We tried several types of curtains that wouldn’t show the poo stains and were hard to rip. They became a strangling hazard because he would try and wrap them around his neck and hang from them – not a pleasant sight for a parent to find. We installed industrial strength curtain rods and holders – he broke them while swinging from them to try and kick the windows out. Should I have left curtains in there so he could hurt himself?
He shreds paper to calm himself, to distract himself from pain, to avoid having to interact with anyone, and because he likes to make it snow by throwing paper everywhere. He often objects to us cleaning up the paper because he likes having it messy. We have reached a compromise – I let him shred to his heart’s content in his room, and he lets me enjoy a relatively paper free environment in the rest of the house. We still clean up the paper in his room every day, and give it a thorough scrubbing when he’s urinated or defecated on it. Yet I am a bad parent for letting him soothe himself this way, and not being there to clean up every shred of paper as it hits the floor apparently.
During mad moments, he would pick up his furniture and hurl it at the window, at the walls, at the door and at anybody who was there. He hurt himself several times doing that. Was I wrong for removing the things that he would hurt himself with, leaving him with only one piece of furniture in there?
He has come out of his room at night while we were asleep, opened the dishwasher and smashed drinking glasses on the floor, to subsequently walk over them. He has absconded numerous times, easily climbing any of the fencing solutions we rigged up, and played on the road, or gone missing. Yet I am a monster for having a lock on our doors.
Attending school for nearly two years traumatized him, to the point that he adamantly showed us that he did not want to be anywhere near his school. Apparently I should have left him there for his benefit.
We tried medications: they constipated him to the point that he could not urinate, they made him slam his head repeatedly into the floor, they made him hurt himself to an extent I had never seen before, they stopped him from sleeping for 29 hours, and increased his anxiety hugely. Yet I am blamed for “pulling him off his meds”.
I am doing the absolute best that I am physically, mentally and emotionally capable of doing for my son, my other children, my husband and myself. I know there may be people out there who have a greater capacity for these things than I do, but they do not live here. They are not here to wipe the tears, to calm the anxiety, to clean up the mess, and to try and hold a family together, that has been subjected to what ‘the public’ would never, ever understand, unless we bring it out in the open.
Am I happy to have shown my son in a state where he was not capable of controlling himself? No. Do I like showing pictures of him naked or semi-naked where anybody can see him? No. Am I glad that I have exposed our messy, chaotic home for the world to see? Absolutely not. Would I have done it if we had received sufficient help and support anytime during the two years we have been asking for it? No way.
It’s been a while since I posted. Mostly because I’ve been so incredibly busy, and life has (as usual) been up and down. There’s a lot that’s happened so this will no doubt be an absolute epic, but I wanted … Continue reading
When I was in my twenties, I would never, ever have thought that my life would be the way it is today. You just don’t plan to be in the sort of ‘madness’ that we survive on a daily basis. Friends of ours just shake their heads at the things that happen to us, like some sort of fairy godmother went all kamikazi on us and we’re now the main feature in a twisted comedy film. Take what happened two weeks’ ago as an example…
It was my daughter’s 15th birthday. It was also our 21st wedding anniversary. Yes, both were on the same day, which is really just another example of our crazy life. It was a fairly ordinary day in that it was noisy, messy and exhausting. I received a phone call from a local NDIS employee, who had (finally) been advised of our escalated status requiring urgent assistance. I actually knew this person – she had previously been a therapist in our town, and we’d had interactions with her in that capacity, prior to BuddyBoy starting school. She didn’t remember us, but I remembered her. I particularly remembered wondering whether she’d had any experience with the type of Autism that BuddyBoy has, as she didn’t seem to be able to work with him or know how to engage him.
At any rate, she advised me that she was ringing to organise an appointment to come and speak with us about accessing the NDIS. She explained that one of the goals of her visit was to make sure that we were accessing the funding we had previously been granted (called an Individual Support Package or ISP), and I told her that yes, we were using it. She told me that we wouldn’t be getting any funding in the immediate future as our area was not due to even roll out until May (only a few weeks away and I know it would take longer than that for the paperwork to be completed). She also said that she wasn’t sure what we were hoping to get from the NDIS, given that we already had an ISP and the NDIS wouldn’t be giving us anything different to that.
I explained that we had a son with severe behavioural issues and had thought of relinquishing him as we found it difficult to cope with him. She told us to seek help from Child and Adolescent Mental Health (CAMHS) as they were the people to deal with desperate situations. In turn I told her that CAMHS had already been in contact with us and had nothing to offer us. I told her we were wanting some help with accommodation for our son, such as an extension on our home or a granny flat, so we would be able to get some sleep and much needed respite, given that no respite facility would take him. This was not within the realms of the NDIS however, as she explained to me. She reiterated that the NDIS would not give us anything different to what we were currently receiving.
After the phone call I was shaken and quite upset. Everyone has kept telling us that we need to wait for the NDIS, that the NDIS will be able to help, and it was just a matter of time. Yet here I was being told by someone who had not even spoken to us or was aware of our circumstances, that the NDIS would not be offering us any more assistance than we already had. Was there really any point in having the appointment, when our contact had already decided what we would or would not be eligible for?
I got on the NDIS Grassroots Facebook page, and asked that same question there. Quite a few answers came back telling me that we shouldn’t be having a contact person who had a prior relationship / contact with the family, and it would be best to ask for a different person to be assigned to us. I was also asked what supports I was getting and wanting to have, so I explained about the extension / granny flat idea. It appears that it’s not the responsibility of the NDIS to fund accommodation for participants, so it’s highly unlikely that this would be funded.
When the question was asked why we needed such a thing, I explained. I explained how his behaviour was distressing to his siblings, or anyone else in the immediate vicinity who could witness him self-harming. I explained that his siblings (and his parents) were not safe as he was prone to attacking others when he lost control. I explained that my son was extremely loud (we supply earplugs to our support workers and often wear them ourselves), that we found it difficult to not only have a conversation or relax, but sleep at night. I explained that we had been so pushed beyond our limits on several occasions, that my husband and I had even discussed doing the unthinkable – taking our own life as well as his. Before you’re concerned – this was a few months ago, and we have told this to pretty much every organisation we are tied in with, and I’ve discussed it with my counselor. We are in no danger of harming ourselves or any of our children.
We know that BuddyBoy would be extremely unhappy if he was placed elsewhere. We know that they would most likely medicate him to the point of being comatose, and given that he is medically unable to tolerate nearly all medications (we’ve done the testing to find this out), he’d also be in severe pain while they did this. At the same time, I don’t know that I would ever be able to forgive myself for putting him into that situation, and would most likely not be able to effectively parent my other children in that scenario anyway. I already don’t parent my other children because I’m needed 24/7 for BuddyBoy, so that wouldn’t change. But imagine how his siblings would feel if we sent him away. Would SuperBoy worry that if he were ‘naughty’ like BuddyBoy, we would send him away, too?
So the result of this honest, open discussion on a facebook group, was that a few hours later, I had three police cars park in front of our house. Someone had decided that I was at immediate risk of harming myself and my son, and called the police. How kind. My husband had taken BuddyBoy for a drive to drop his older sister off at work, so I was at home with three of the other children. They were terrified to see police cars in front of our house, and promptly hid. I guess I shouldn’t have been talking about medical kidnappings in the US, or homeschoolers in Germany being jailed. 😦
Five police officers in full vests walked up to my front door – a very intimidating sight. They checked my identity and explained that a concerned citizen had made a call to say that my children and I might be at risk. I mustn’t have looked that insane, as they sent two of the police cars away in short order, and I invited the two remaining officers inside. I then had the job of explaining to them exactly what had gone on earlier in the day. Thankfully they were very nice and seemed to understand our situation.
My husband wasn’t particularly overjoyed to see all three police cars parked in front of our house (and blocking the driveway) when he arrived home a few minutes later. That was nothing compared to the severe anxiety my mother went through however! She lives in a granny flat on our property and immediately assumed that BuddyBoy had run off and been hit by a car, so once everyone left she came over, as white as a sheet. Thankfully her blood pressure and heart managed to survive the ordeal intact!
As part of my ‘process’ with the Victorian Police, I had a half hour long phone call with a psychologist stationed at the police station. She was lovely, and very understanding. She had previous experience working in the Disability sector, and couldn’t fathom how everyone had basically passed us on to everyone else, and not helped us out more. Yeah, me too! She took copious notes and said she was sending emails off to some people to ask about support for us. The next day I got a phone call from CAMHS, telling me they were closing our file. Oh, the irony!
Today the saga continued. I answered our door to find three workers from Child Protection Services wanting to talk with me. They interviewed me and one of my children and will be back to interview the other two younger ones. As is my policy, I told them everything – friends and my hubby keep telling me I should be more circumspect in what I say in a public forum (I know they’re right) but I work on the “honesty is best” policy. So from here, CPS will be contacting everybody we’ve had contact with, and who knows what will happen then. By this point, I have pretty much given up all hope of any government organisation being able to actually help us any further.
I’ve also found out a bit of news about the changeover from ISP to NDIS funding that leaves me quite concerned, but more about that next time!
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.