January, 2020 – it has now been over 12 months since the NDIA sent Alex to live 184kms away from home to receive full-time therapy. It has been 9 months since the NDIA was supposed to implement a capacity building … Continue reading
Once again, we were in the news. Ashley, the lovely journalist from our local paper who interviewed us last year, really cares about what happens to us. She’s a genuinely nice person who wants to help others, and so they … Continue reading
I love my little boy, I really do. He’s funny, he’s smart, he’s loving, and he’s certainly never boring! He’s taught me such a lot about myself, parenting, compassion, fighting for justice and human decency, and generally just about the … Continue reading
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.
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!