A birthday, an anniversary, the NDIS and three police cars

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!

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.

Autism Networking

Caregiver-Support-Circle

When we had our first child, we knew there was something different about her. We tried a lot of things, saw a lot of professionals and got a lot of useless advice, but nothing really helped. Eventually we decided to just accept her as having a disability of some kind, and I say disability in a meaningful way, because her day-to-day life was affected negatively (as was ours). We made changes in our behaviour to accommodate hers, used a variety of tools to help her cope with life, started homeschooling, and fumbled our way through the first 15 years of her life.

She has three younger sisters – two of whom were ‘full on’ and had what we assumed was ADHD, but as we were homeschooling them, we coped with that. We also had two boys – the eldest was diagnosed with Autism at age 2¾, and while researching Autism, I found a lot of similarities between my oldest daughter, and descriptions of Asperger’s.

I finally had an answer to why she was so different, why life was so hard for her, and why all the advice we’d been given in the past just didn’t work for her. I then started doing more research (as I do) and it occurred to me that maybe she wasn’t the only one of my girls to have Asperger’s. We ended up with a diagnosis for three of my four daughters and it really felt like my world fell apart. Behaviours that we were hoping they would ‘grow out of’ or we could change if only we found the magic parenting key, we now knew to be part of their Autism. We knew that they each needed more help than we’d been giving them, and yet I felt unable to provide that, given that my son needed so much more.

Others around me didn’t understand what we were going through mentally and physically, and I felt terribly alone. I managed to attend a local Autism Support Group, and finally found other parents who KNEW, and I started to feel less alone. These parents were also dealing with the grief of an ASD diagnosis, struggling daily with their children who had behaviours that seemed bizarre and often made life difficult for the children and their parents. By then I had already been reading books about biomedical treatments, and I was looking forward to hearing from others what they had tried and could recommend.

Unfortunately, I was disappointed. The prevailing attitude was that you had to accept that this is how your children would be forever, that no therapy or treatment would make any difference and the sooner you accepted that and moved on, the better. When I tried to discuss books I had read or treatments I had researched, I was told I was wasting my time. I once again felt alone, even in the middle of a ‘support’ group.

One thing I have learned in life is that I don’t have the time or emotional stamina, to deal with a huge amount of negativity. I want to surround myself with positive people who will help me and support me, not naysayers who drag me down. Thankfully, I managed to find an online support group which was all about helping our ASD children with their many health challenges. Here I found other parents who were changing their children’s diet, and using a biomedical approach alongside mainstream therapies, in order to help their children. I was inspired by parents who had been doing the hard work for longer than I had, and even found a couple of local parents. I was no longer alone.

These days I am in a number of online support groups, and the things I have learned from other parents on the same journey are amazing. When new treatments or therapies start snowballing through the ASD world, I have friends who send me information, add me to groups so I can learn more, and sometimes even send me new things to try. My friends are all over the world, but we are all united by our aim of improving our children’s lives.

I occasionally manage to meet like-minded parents in my town, but the highlight of my social calendar is attending conferences (when I can afford to). Often these are the only times I can catch up with my best friends – those who are working hard in the trenches right alongside me. We hug, laugh and sometimes cry, and share our latest successes and failures. We swap notes on supplements, doctors, new foods, the best places to go for various hard to find items, and update each other on our children. Most of all, we are there for each other – to listen, to support, to care and comfort when needed.

We meet ‘new’ parents who are starting out on the journey, just like we did, and we help them just like we were helped by those who came before us. If you haven’t already found your support network, please do contact me and I’d be more than happy to connect. 🙂

 

Being an Autism Parent has taught me…

To cherish every little smile that is bestowed upon me.

That it’s okay to cry with happiness when your child actually looks you in the eyes.

How important it is to just be there – not doing, just being.

That Love is expressed in so many more ways than just through words.

The importance of nurturing my relationships and helping them to flourish – but only the ones that really count.

All is not always as it appears – especially when it comes to children having meltdowns in public places.

That sometimes you can feel so proud of your child that you might burst – even though they’ve only said one word.

How hard you have to fight to get your child the basic things in life.

That other people can be totally ignorant, clueless, self-centred, arrogant, rude and opinionated – and they don’t hesitate to share all that with you in front of your child.

To be grateful for sleep – any amount, anytime, anywhere.

The importance of what goes into a little person’s stomach – and how hard it is to get it in there in the first place.

That you can build up a tolerance to the smell, look and feel of poo – everywhere.

That other mothers on the same journey as you, make better friends, cheer squads, therapists, researchers, teachers, and marriage counselors, than anyone who you could actually pay to do those things for you.