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.
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