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
Seriously? You what???
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
When Quality of Life is reduced to a dollar figure
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
We need SLEEP!
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.
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