autistic – AUTnotISM

The Need for Greed

Autism And Billion Dollar Corporations Do Not Mix

Its been quite a while since I’ve done a post. I am not the same person I was when I wrote my last piece and you’ll soon see why.

It’s hard to know where to begin, so I will start by saying that as always, my intention is to help families and individuals dealing with Autism. Now, more than ever, particularly in Australia where we have wide spread flooding, I want to use this platform to inform others who may be about to head down the same path I have been on for the last two years, of what they may be up against as they start the process of dealing with insurance giants and building corporations who’s main goals behind the scenes, are their targets and ‘KPI’s’. During this post, I will not be naming the insurance or building companies for now. If you found this post because of their reviews, you’ll know who I’m talking about anyway. If anyone else finds this, the tactics used will likely be used by other, similar companies.

Two years ago, we were home on a Sunday like most other families. Still reeling from the shock of Covid lockdowns and finding our way back to a new normal. I headed to the shops to buy the requested lamb roast for dinner…how very Australian. As I went to grab a tin of Gravox (yep, I cheat at gravy), my phone rang. Being a number I didn’t know, I almost didn’t answer. I was shocked to hear my hubby’s voice on the other end. He had been battling brain cancer for the third time and was always in hospital with seizures, so I assumed he was calling from a paramedic’s phone. Not the case, he was calling from our neighbours phone. I heard him say ‘ the house is on fire’. Now I knew I’d done an okay job at decorating, but the tone of his voice informed me that he was not calling to compliment my decorating prowess. ‘What do you mean?’ I replied, hoping I had heard wrong, or for more detail or for a completely different response, but he repeated it. ‘the lounge caught fire, there’s fire trucks everywhere’. I dumped the basket of lamb and gravox on the nearest employee because I’ll be damned if I’ll let a little baby lamb go to waste just because my house is on fire. I don’t remember getting to my car, I was in such shock. I raced towards home, where it became increasingly obvious that the 5 fire trucks, 2 police cars and an ambulance, weren’t there to admire how I managed to get two completely different types of timber to work together in a cohesive way. The house was literally on fire. Shit.

I stopped by the ambulance to check that my family were ok. Thankfully my daughter and her boyfriend had managed to get Brian, Fraser the cat, the dog and themselves all out safely and everyone was shocked but ok. Those two are my heroes. I shuffled through the ghouls who stood there like the zombies from I Am Legend, filming our home burning as though it had been arranged sheerly for their entertainment. I wanted to stay with my grief stricken family, but I had no choice but to go in to get the chemo meds, seizure meds for my hubby and son, and the insurance papers. It was unreal. The smell is something I’ll never forget. The house was wet, black and utterly horrifying. In the days to come, as things settled, the walls looked like they were bleeding black blood. In hindsight, I could have charged entry to the I Am Legend ghouls and cashed in but they were the furthest thing from my mind.

I got a call from the insurance co to get the ball rolling. Because of our extenuating circumstances, we’d been classed as a special care case and given an absolutely lovely case manager. She was everything I didn’t expect from the insurance horror stories you hear. She was kind, compassionate and helpful and continued to be throughout the claim. She is the one thing I will give absolute credit to through the process. The first person and the last person I dealt with throughout the process were the best thing about it. The rest was an absolute nightmare.

I shared with the insurance company, everything that was going on and they were with me in real time as events unfolded. They moved us into a serviced apartment, where we were very comfortable and got the chance to begin to process what had happened. Two weeks after the fire we had agreed to meet the assessors at the house to get the ball rolling. The night before though, Brian had what we thought at the time was an unusual seizure. I stayed at the hospital all night, only leaving him to go and meet the assessors while he was transported to his treating hospital, I was not allowed to accompany him because of Covid. I must have looked a fright. I had been up for more than 24 hours and still had my ‘visitor’ sticker on but keen to get things started so I could get Brian and Fraser home asap. Once at the house, I explained the seizure situation, especially with my son and that I needed a separate bath (we had the shower over the bath situation which is completely unsafe for him). I was told that would be no problem, that could be done easily during the restoration process, we’d just take some space from my daughters room. This felt like such a gift, I heard the Hallelujah chorus…it was like a miracle! It had been worrying us for a while and we were looking into getting the bathroom done for that reason, but brain cancer and global pandemics tend to put those kinds of projects on the back burner.

The last few years had been tough with Fraser developing Epilepsy and Brians brain cancer returning, then the fire. But, when you think it can’t get any worse, the universe jumps up and goes ‘SURPRISE! You thought that was bad’!

Brian died a few days later. What I thought was a seizure, was a catastrophic stroke. The stress was just too much for him. After saying goodbye to the love of my life I got in the car to head home. Brian got the last laugh when Cutting Crews ‘I Just Died In Your Arms’ came on the radio. I laughed and cried knowing he would have thought that was hilarious. I was, still am and will always be, utterly devastated. I can’t put into words just what we had. I will never be the same, and nor should I. I have come to except that I was beyond lucky to have had the time that we did and how lucky I was to have experienced that at all.

Okay, tissues down, this ain’t no sob story…this is a cautionary tale for gods sake! I was promised by both the insurers and the builders that all would be ok and we would be looked after. I believed them, and I believe they genuinely meant it at the time. They were lovely to me and brought me flowers at the next meeting and I was truly grateful and felt cared for, but unfortunately, that was not the case for the most part.

Haaaaaaaaaaaaa. Sorry, that was just my deep sigh before I begin. It’s a lot, and I’ve written this countless times throughout the course of the claim, but I am determined cover as much as possible, because every action and event that we lived through, may be helpful to someone.

During the two weeks between the fire and Brian passing away, we were determined to be optimistic, to try and look for the silver lining and be positive. We loved our home and couldn’t wait to get back. When Brian died though, I was so confused about what to do. Whether I should go back home or move somewhere else. I didn’t realise how much of the house needed to be done. I assumed a lot of it would be cleaning, but I found out at the meeting, that the entire house would be stripped bare and renovated and that every bit of furniture and the majority of our possessions were smoke damaged beyond repair and would have to be disposed of. Makeover anyone! In the mean time, while drinking sav blancs, I was perusing real estate and home builders, when I found a beautiful house for sale. I went to look at it, fell in love with it and came close to considering it. My kids and sister came with me to look at it again, it was perfect, and just around the corner from my cousin, which was even more perfect because she likes a wine too. I asked my sister to come back to my blackened home with me. We sat out on the deck, sad, lost, confused. We were discussing it when, out of the blue, with no wind, the side gate gently, fully opened. I should have listened in that moment. I think that was my house whispering ‘GET OUT’. I should have bought the pretty house and left the horror show behind. Hindsight is a wonderful thing. I have learned to trust my gut and I should have trusted it then, but I was in so much pain and anguish. The nostalgia of our christmases with family out on the deck and cricket matches in the back yard, the sav blancs with friends…many many sav blancs, kept calling me back.

During this time, I looked into the reviews of the building company and became very concerned. I spoke to a lady at work who had been out of her home for a year after her kitchen flooded. Her insurance company had used the same builders and she warned me about their tactics. I also visited another building company to discuss knocking the house down and rebuilding. I didn’t proceed because they told me the house wouldn’t be ready until February 2022 . I was desperate to get Fraser home, so quickly decided against it. Ah universe, you have a wicked sense of humour! I phoned the insurance company with my concerns with the builders. I told them I had found another house, but I was assured that I would be looked after, that they were professionals, there wouldn’t be a problem and that for the few bad reviews, there were a lot of happy customers who just don’t bother doing reviews. Damn you nostalgia! Damn you happy memories! Damn you sentimental attachment to inanimate objects! Nervously, I went ahead with the restoration believing, or wanting to believe, that going home was the right move and it would all be ok. This was my fork in the road moment, the one I look back on and know that if I had my time again, I would chose differently. I again, believed what I was being told.

Strap yourself in for the hell ride that was 2021.

The restoration works began with he removal of asbestos from the eaves and the enormous, exhausting task of clearing out the entire house. It was just awful, but I did manage to save quite a lot of sentimental things and store them in the garage. By now, I want to remind you all that Fraser is autistic, non verbal and has an intellectual disability. He coped AMAZINGLY well with all of this. He absolutely loved his books, they were his world, but his room was so badly damaged and his beloved books so badly blackened with soot. I was so amazed and proud of him coping with such huge losses. His entire world was turned upside down. Those of you with an autistic child will recognise how exceptional this is.

I was told there was no money for storage of my items, that any storage would be up to me to pay for. We had a huge garage, so it was logical to put things in there. Mistake number two.

I eventually received a timeline of works that would have us home by July/August so I set about designing the entire house. Kitchen, bathrooms, laundry, paint, tiles furniture, curtains, the entire works. Focusing on the house was the thing that was keeping me going as I struggled with my grief. While arranging the funeral I had also managed to find a rental home for us to move in to, so we were finding a new normal while we waited for the works to begin. Weirdest multi tasking ever.

I had a few meetings at the house early in the year. When I asked about the bathroom at one meeting, it was quickly shut down. They told me that they would need council approval and that it would hold up the works so it couldn’t be done. What’s that now? At one point an architect came out to look and we had a long discussion about the possibilities. I never heard anything about that again. No matter how many times I brought it up, I never got and still do not have an answer about what happened. I had some issues with the floorboards…I had Tassie oak with a jarrah border which unfortunately followed the profile of the kitchen cabinets, which was a problem, because I wanted to change the layout. After considering a floating floor, I discovered that my new neighbour did timber flooring! Thankyou universe! So he and I worked out a plan to alter that. Apart from the weirdness about the bathroom, we were good to go.

I remember being out looking at couches with my kids when I got a call from my supervisor at the building co, asking what my plans with the floor were. I said my plan A is to restore my existing floor and plan B is a floating floor. He said ‘well why don’t we make plan B, plan A’. He told me they would pay me out the cost of sanding and polishing the existing floor which I could put towards the cost of the the floating floor. I wasn’t sure and told him I’d think about it. I was still in couch mode and had to compartmentalise my thoughts. L shaped couch? Two separate couches? Decisions, decisions. The floor would dominate most of 2021 and cause me more stress than I had ever experienced…to that point. I think I need a vino just thinking about this. Seriously.

Finally, things started happening. Meetings about the kitchen, bathrooms, laundry, discussions about architraves, appliances etc. There was so much to cover, but while it was very slow to start, things were happening. During this time, I continued to work, Fraser was at school and my daughter was having a gap year having finished year 12 in 2020. All things considered, things were relatively normal.

We regularly took Fraser to the house to acclimate him to the changes as they were happening. We came up the driveway one day after the temp fencing had gone up and noticed the garage door wide open. We had been burgled. Our remaining belongings were thrown everywhere and so much had been taken. I called my supervisor who sent someone around to secure the garage. My father in law actually hung a new, more solid door for me. The insurance co sent the assessor out and told me windows would be boarded up, cameras would be installed and new locks on the garage door. He was ‘outraged’ that this had happened to us. But none of this was done, it was all just talk which lead to another burglary. I got a call at work to say they had broken in again. The door was again, secured, very basically for a second time. I was desperate to get my remaining items out of the house, but I couldn’t get the door open. I asked repeatedly for it to be opened, but I was routinely ignored. I went to the house one morning a week later, only to find the garage had been broken into…AGAIN. The supervisor had been there that morning, but didn’t even bother to tell me. The plumber informed me on my way up the driveway. This was by far the worst with our stuff strewn everywhere. My husbands tools and radio were taken. This was worse than the fire for me. Not only had we been burgled again, but the builders, on the same day, had thrown out $3000 worth of my sisters collectables that they found in the roof space. I was just beside myself. The insurance company suddenly found money for a storage facility… too little too late. My husbands mates had to come and put new locks on for me, because the building co didn’t bother.

New plaster was finally hung and the house was starting to look like a home again. Some kitchen cupboards even went in…but lets not get too comfortable now, cos shit’s about to go down!

To expedite the process, I had decided on a floating floor, because I had been told that if I used my own trade to do any work ie: fix the aforementioned jarrah border issues, that I could hold up works and my rent would not be paid. Hmmm, what to do, what to do. Though restoring my timber floor was absolutely my preference, with the threat of unpaid rent, it seemed like a no brainer. So, the supervisor (I’m getting tired of typing supervisor so we’re now going to shorten it to sup…first world problem, I know) organised for some floorers to come out and quote on the floating floor. I had samples everywhere, but was feeling relaxed in the knowledge that something positive was happening. Insert laugh emoji here, because the universe is just warming up. I got a call from the sup to say that the floorers who had been booked had pulled out of the job. What? Why? I asked. ‘They told me the floor is uneven and would need to be pulled up, but I told them “my client won’t want to pay for that”. Confused, I agreed that no, I would not want to pay for that. I was at a loss. My floor boards were spectacular and smooth as glass. I couldn’t work it out. He feigned disgust and disappoint at his colleague for letting me down. And the Academy Award goes too…

While my daughter and I were on a site visit with the sup, I asked him about an issue I had started to notice a few days before with the floor. Some of the floorboards had started to ‘tent’ and had become wavy and uneven, and the door near it was so jammed that it could barely be opened. He explained to us the it was caused by ‘the huge amount of water dumped onto the house to extinguish the fire’. Obviously this was why the floorers had pulled out. They knew it was too damaged. Later that same day, after being dumped so unceremoniously by the flooring mob, I had arranged for another floorer to come out. After a quick look at the floor, he looked up at me with such concern on his face that I was stopped in my tracks. He told me the floors were water damaged so badly, that they needed to be pulled up. He said he couldn’t live with himself if he took advantage of a situation like that and went ahead with the order. I will be eternally grateful to him. I called the sup as soon as the meeting was over and told him what happened. You just couldn’t make this shit up…he told me that the floorboards were not water damaged and were like that before! The SAME DAY that he had explained to me they were water damaged! He told me to contact the assessor, which I did. They then proceeded to commission an engineering report! What the hell?!?!?! Nothing was making sense. I had to wait weeks for the report, not understanding at all what was going on.

A few weeks later, I got a call from the sup saying the engineering report was in. He sounded strange. I asked him if anything was wrong. He said ‘the assessor will call you’. I asked if the results were going to hold up the works, and he told me ‘it depends on how quickly you can make a decision’. My heart was racing, I didn’t know what the hell was going on. In 2020, we had our front porch re done, this was a master builder who had seen and accessed under the house, so I knew nothing was wrong. The assessor called me later that day. The call was absolutely disgusting. I have never been so condescended too in my entire life. Something felt so wrong. He was talking about the floor incorrectly (tried to tell me instead of secret nailed boards onto yellowtongue, that my boards were directly nailed to the joists), tried to tell me the garden bed outside of my dining room window was at fault, ‘who has a garden bed outside their windows?’ he growled. I was utterly gobsmacked. He went on to tell me how poorly designed my house was…(wasn’t the first or last insulting comment about my home) and how, as a favour to me “we don’t have to do it”, were going to fix it for me free of charge! I asked to see the report, and he said he would send it. I received it the next day after following up again. The ‘report’ was the biggest load of crap I have ever seen in my life. This post is already long enough, so I’m not going to go into the ridiculous details of it, but needless to say, I went through it with a fine tooth comb and questioned everything. No one ever got back to me with answers. What to do now? I wrote an email to the insurance co and included photos and videos of my floors. Thanks to good old Covid and homeschooling, I had oodles of photos and videos from working with my son…on the floor! I contacted the Australian Timber Flooring Association to book a consultation. Thankfully, the Ins (I’m now sick of writing insurance co, so henceforth, they shall be know as Ins. Yep, I know), booked them to come. In the meantime, my new next door neighbour and his best mate came to have a look and couldn’t get over how bad the floors were. With decades of timber flooring experience between them, they said the floor was beyond repair and needed to come up, so I knew where I stood while I waited further weeks for the ATFA dude to arrive.

Finally, the day came, the dude arrived and declared that yes, the floor was water damaged. Duh! More weeks of waiting for the actual report which stated that the floorboards could not be restored, but that amelioration works could be undertaken to make the floating floor a viable option. So again, I waited. More weeks go by. Move in dates, coming and going now. I contact the ins to see what’s going on, only to be told the the assessor is disputing the findings of the ATFA report. FFS!! Another meeting at the house and it was decided that money would be put towards the amelioration works so the floating floor could get done. Problem solved? Ha, of course not! We’re not even half way through the floor saga my friends, so top up ya drink! The sup left and moved overseas. I got a new sup. He seemed eager to get things going, so finally the bench tops and some tiling got done. Woohoo! He found a new floorer, so I went and chose more samples. It was strange time, because things had gone so slowly at this point but this guy was moving quickly, which actually troubled me. I could see him cutting corners on things so I was on alert. It was odd, but I was so over it all by this stage. He promised me we’d be home by Christmas. I was so excited! So he booked the floorer to come the following week, but something was nagging at me, I didn’t know what, but I couldn’t shake the feeling that something was wrong. And then it hit me. I call the sup and asked him who warranties the floor? ‘Thats not us, you’re paying for the floor’. Hmmm. I called the floorer to discuss. He knew nothing about the amelioration works, had just planned to put the floating floor over the damaged boards. WTF? He told me he would not warranty the floor. So, I call the sup back. ‘Whats happening with the amelioration works? Do you guys warranty the floor’? I ask. He replies with ‘No, we won’t warranty the floor’ and ‘What amelioration works’? AAAGGGGHHHH!!! I Contact the Ins, who also say they will not warranty the floor. So I have no choice but to refuse to go ahead. Put a floating floor straight over water damaged boards with no warranty?! No way. I get a call from the assessor to say that I had been pay out for the floors so it was not on them. Pay close attention here… I had not been paid out for the floors, only the sanding and polishing! Honestly, the shit they pull is disgusting. I stood my ground and refused to go ahead. I called the sup and asked for a meeting. Every time I spoke to him he’d say things like ‘I’m so sick of this floor’ ‘I’m over this floor’. I eventually met him at the house, and in tears, asked him what was going on. He walked out without saying a word. The sup left and moved interstate.

You exhausted yet? Weeks go by with no word. Then, at the end of September 2021, things went from bad to unbearable. On a weekend we were supposed to move home, but didn’t, (the only time I had marked it on the calendar but forgot), Fraser cracked. He couldn’t take anymore. He couldn’t say Sussex Home, which is what we referred to our house as, he called it ‘Sucket home’ which was apt because it did suck. He started screaming ‘sucket home, sucket home’, and hitting himself in the head repeatedly. I watched on in complete horror, helpless watching as he then got down on the floor and started slamming his head into the floor. I was utterly beside myself. Every attempt to help him made him worse. I sat on the floor and sobbed my heart out. I ultimately had to take extended leave from work to look after him as the extreme head hitting was continuing and causing seizures. I will give the ins credit on this, after I complained, they did eventually pay me out lost wages and some other expenses….they were for the most part, often good in that area.

First thing the following Monday, I called the ins in tears, explaining what happened and begging for help to get Fraser home. Like a miracle worker she rallied everyone into action and the house got done asap. Fooled you!!! No work was to happen until February 2022. No, I’m not kidding. In the meantime, I got a call offering to pay me out for the entire floor. They just didn’t want anything to do with it. I checked with my neighbour and he told me unequivocally not to do it. I stuck to my guns, knowing all too well, that with the timber and labour shortages, that I would be taking on more than I could handle. They knew everything I had going on but still wanted to fob it off onto me to deal with. They knew if I couldn’t get it done in time they could stop paying my rent. Unbelievable.

I lodged complaint after complaint. I had not been given a new sup, so I contacted the building co, nothing. I contacted to only person there I had details for. Nothing. At one point I got the contact details of the CEO of the building company and threatened to go to him. I hindsight, I should have done just that. But with that, things started happening, and I got a new sup. This was the guy. I was reluctant to feel hopeful, but my gut was telling me this was the right guy to get the job done. I demanded a meeting at the house which happened in the middle of December and finally got an inkling of what was really going on. I knew that there was water under the house and I was aware that there was a slight issue around it but not the full extent. It became clear, though not totally yet, that they had not wanted to pull up the floors because if there was a drainage issue underneath. I was told by a third party, that if they found such a problem, they were obliged to fix it. He said ‘they don’t want to open a can of worms’. It all seemed to make sense. They had offered to do all of the necessary plumbing and drainage for which I was immensely grateful, and felt like it had all been worth to save me future problems. At the meeting I asked how long the house would take…to my horror, I was told April. Seeing the look of horror on my face, they said maybe March. I was horrified at the thought of Fraser being out of the house for another 3-4 months. Suddenly more engineering reports were ordered…you know, proper ones. When I saw them cut holes in floor to do the engineering, I knew just how pathetic that previous report was.

Work started in February with external plumbing works being completed and the floors, the floors FINALLY being ripped up. I cried tears of joy when I saw that. There had been a lot of water under the house for a long time so it was pretty muddy. Huge heaters were bought in to dry it out before the new floor was installed. I remember being so shocked and bemused by it, as we had never had a problem like that before.

About a week later, my daughter and I went to the house to find my shed had been ransacked and burgled. Ugh, seriously! I popped into the house a few days later…a Saturday to make sure everything was ok, and there were no more break ins. With appliances and things now stored in the garage, I was deeply concerned. When I got to the house and opened the door, I was absolutely shocked at the sight that greeted me. I walked across the bare joists looking incredulously at the sub floor which was now covered in water! There had been a heavy down pour the night before, but how could that explain this after all of the engineering and plumbing works? In absolute disbelief, I went outside, looking for an explanation. A burst pipe was all I could think of, but there was nothing like that I could see. Then I saw it. The thing that had caused this entire nightmare. As I suspected all along, there had NEVER been a water problem under the house. There was no guttering! The guttering on the room where the fire had been was removed and had not ever been replaced in the entire 18 months. The guttering on the rest of that side of the house was hanging down, unattached to anything and pointing toward the back porch, where the majority of the water had been pooling. I felt sick. I took loads of photos and videos and went home to send an email detailing what had happened.

The following week, I got a call from the assessor. Every time this dude called it was only to railroad me into something. There had been the floor issue and along the way he called me to tell me I was getting paid out for the bathroom with no discussion or explanation, so my bullshit radar was pinging big time. Of course I wasn’t wrong. He called to tell me that he’d been to the house to check, and the reason for the water under the house was ‘my naughty old plumbing’ and that it was now fixed. Cringe. I knew all of the plumbing had been replaced so I went back to check. As I walked up the driveway, I found that very piece of plumbing in the skip bin. I was able to match it to the photos and videos I had taken of it. I turned it over and looked at it…it had a manufacture date of 2021 on it. They hadn’t taken the bar code off when they quietly replaced it. My naughty ‘old’ plumbing eh?

These are the lengths they’ll go to, to cover their asses and make you responsible for either their own mistakes or things they don’t want to pay for. Nothing I said, nothing I did, my almost ten years of living in that house and experiencing it didn’t matter. They needed the narrative to fit their outcomes and budgets and no discussion would be entered into. But the fact remains, there was never a drainage issue. The water pooled under the house because the guttering was neglected to be reinstated. You know how I can prove this? Because once the plumbing went back on, there was no more water under the house! Hazzah!

So of course they admitted everything, apologised, payed me compensation and got the house done pronto. Got you again! No, this time they tried to blame my brother in law, who is a plumber, who had simply stopped by the house to check after being invited by the builder to re-do the guttering! They tried to say that he redirected their plumbing!! You really can not make this shit up. He stopped by for 10 minutes and couldn’t even do the guttering because he was so booked up.

In the meantime, my poor boy went from bad to exponentially worse and began head hitting morning, noon and night. His last outing was to the house, where we met the sup and assessor. I had to leave as, in front of the horrified tradies, Fraser started head hitting. The all got a look at exactly what I had been talking about. The drive home was a nightmare. He became extremely OCD and stopped doing everything he had previously enjoyed. He stopped seeing his carer, he couldn’t handle birds in the backyard, he didn’t want to go for a walk, drive, nothing. I am not going to talk about his other extreme behaviours at this point and I will explain why later. My life became absolutely intolerable. I couldn’t even get off the couch because he wasn’t coping. I sat next to him for months, watching the same shows at the same time EVERY. SINGLE.DAY. I was constantly emailing his Psychiatrist and Neurologist, because he couldn’t’ even cope with me talking on the phone. His neurologist was horrified and wrote a letter to the insurance company saying so. I forwarded it to the ins but they just ignored it. No response. All of our friends and family were horrified at what had been happening. They all know Fraser and this was not the same person. We had a life before this. We used to go on trips to theme parks, cruises, houseboats to the shops, out for dinners, you know, like normal people. Now I can’t even take him to the Macca’s up the road. We had put so much work into not letting Fraser have too strict a routine. We had him organised to go to day programs as he finished school at the end of 2021, but he has barely left the house since. His teacher came to visit him and could not believe her eyes. His head hitting was so extreme while she was there, that she had to leave. That would be the first of many guests that would have to leave, or not be able to come over because it was too distressing for Fraser. His seizures increased with the head hitting and no medication would control it.

I hoped like crazy that moving home would make a difference. The house was finally almost finished, so I would lay in bed at night, wondering how the hell we were going to move house with Fraser like this! The story is too long. It was a fucking nightmare, but we got there. When I pulled into the driveway with Fraser, on moving day, I had no idea how he was going to cope. I had prepped him as best I could, but It was a complete mystery. He hadn’t seen everything in, what would he think? We got out of the car and walked to the door. I opened it up and he walked in, smiling. I hadn’t seen him smile for months. Then he started jumping up and down giggling uncontrollably! Jumping around the house like Tigger, looking in every room, opening every cupboard, every drawer. He loved his room, he couldn’t stop smiling! I had tears of absolute joy and relief. I was also aware though, of how different things would have been had we got home when we were supposed too.

Ultimately, Fraser is so much happier at home, but sadly its too late. The brain inflammation and concussions have taken their toll. He continues to head hit, though using a supplement called NAC, some Chinese Herbal formulas, good old anti histamines, two different types of prescription cannabis oil and a couple of pharmaceuticals, we are making some gains. He has been for a couple of short walks and drives over the last few months, but this behaviour is now ingrained.

So, why am I writing this now? My daughter celebrated her 21st birthday in August. We were only able to have my mum, brother and sister over. That was even too much, with Fraser slamming his head repeatedly into the floor to the horror of my family, particularly my brother who hadn’t seen the head hitting before.

I got angry. Who wouldn’t? I contacted the insurance company, wanting justice, wanting an explanation. I got the same old bullshit. Despite the clear evidence that they had caused the issue that caused the delays, I got the standard cut and paste excuses. Interestingly, major issues were completely ignored, not denied.

I then finally contacted the CEO of the building company. He got back to me within an hour, saying how saddened he was and to give him time to get up to speed and he would get back to me. He CC’d the email to others in the company. Nothing. Ignored again. So, last week, after more head hitting, Fraser had two big seizures in one week. One of them was on the first hot day we’ve had all year. Anyone who has seen a Tonic Clonic seizure knows how dangerous and exhausting they can be. Doctors have told me that physically, it’s like running a marathon. So as poor Fraser was recovering, I went to turn the air conditioner on for the first time as I couldn’t physically take any layers of clothing off him. Nothing. Air conditioner not working. Later that night, the dishwasher also stopped working. I contacted the builders. Surprise surprise…nothing. All I need is the purchase date of the dishwasher, and the installer of the air conditioner. They can’t even get back to me with that despite multiple attempts. In September, I had to quit my job. They had been so good to give me so much leave, but couldn’t hold my job open any longer. So now, I am out of work indefinitely, I don’t now when/if I can work again. Frasers medical bills are a fortune as prescription cannabis is not on the PBS. It bloody well should be but I’ll save that for another post. So I now have to pay for my warrantied dishwasher to get fixed as well as my brand new air conditioner. It’s just too much

Last night I was watching TV. It was a slap in the face to see the ins throwing millions of dollars at contestants on game show, while they tried to throw me under the bus financially at every turn. Then after that, was a show about an Australian neurosurgeon. I was interested as we’ve had our fair share of experiences with neurosurgeons. During the show was an ad for a famous Australian charity for sick children came on. A beautiful, worthwhile charity that most of us are familiar with. The head of this foundation? The very same CEO of the building company. Rightfully and admirably helping sick children, but no concern for my son who is sick and suffering from the very actions and processes of the of the very company he is CEO of. I just don’t get it.

If its publicity these people want, then that’s what they’ll get. During this process, my friends have begged me to go to the media. I never wanted to do that as I felt like I was exploiting Fraser. However, after watching that shit on TV, I am enraged even further. During the shows, news bulletins broadcasted pictures of flood ravaged areas. Those poor people will be just starting their journeys like we did 2 years ago. How many autistic or special needs kids and adults are among them? Thinking they’ll be looked after, and maybe they’ll be lucky, but what if they’re not? I can’t sit on this information and not inform people of what can happen. One of my friends did contact the media, they have since contacted me about my story and I have resisted. No longer. I am unable to work, or barely go anywhere. I’ve got nothing but rage and Sav blanc to keep me company. As you may be able to tell from the tone of this post if you’ve made it this far…I have changed. I will get myself and my son back one day hopefully, but its a long road ahead. I will not do this quietly. I want justice, I want this to help someone else. There is so much more, but I have covered the majority that I think will be helpful. Gotta save some things for later!

What can you do if you find yourself in any one of these situations? I of course can’t tell you what you should or shouldn’t do, but what I can say is, trust your gut. If something feels off, trust it. Question and question again. Be aware that they are driven by targets and KPI’s. Document EVERYTHING! I didn’t hear back from the building co recently, but something was happening because conversations disappeared from my phone. Luckily, I kept every email and screen shot every text. If I had my time again, I would print up every email and every text message and start a file in date order. It’s a lot of work, but well worth it. I would even go so far as to set up a seperate email account just for the claim as my email became so full that they were bouncing back. Keep a diary to write down phone calls and document everything. The ins record phone calls. With that said, the shady calls I mentioned earlier always came from a mobile phone, so there was no voice recording. I always screenshot the call record though so I have some documented proof that they occurred. There are places you can go for help, but depending on your issue, it is limited, such as ACFA. If you do put in a claim to them, the outcomes appear to be very limited.

If you are beginning a journey like mine, I wish you nothing but the best. I’m sure there are plenty of happy endings out there and I hope that happy ending finds you. Mine hasn’t yet, but I’ll keep hoping. If you are struggling with behaviours in a person you love who is autistic, know you are not alone. It’s not an easy road by any means, but hopefully some answers will find you.

After reliving all of that, I’m off for my favourite drink. Think I’ll need a couple.

All the best, and cheers!

Kitty.

Is gamma interferon with your social life?

Yesterday, we went out shopping for a new couch. Fraser loves trying out beds and couches, especially the big puffy recliner ones. After all, they are just house trampolines aren’t they? He bounces from couch to couch testing them all out for us, occasionally reclining with his sister with a wry smile on his face. After the third store though, the novelty began to wear off, not just with him but with Brian as well. I count on this boredom factor, as it usually means I have a better chance of getting the couch I want because it means we’ll get out of the store quicker 🙂 Anyhoo, Fraser did what he does when he’s had enough, he started saying ‘chipst’. Obviously, he wanted chips, but he likes to add a ‘t’ on the end for affect. So we’re wandering around looking at couches and all we hear is ‘chipst, chipst, chipst, chipst’ over and over again. He counts on us getting annoyed, as the annoyance factor usually means he has a better chance of getting the chips he wants…hey, wait a minute! So couchless, but armed with enough visual information to go on with, we headed for home with a quick stop at the drive through along the way. I say to my passengers, ‘does anyone else want chipst’? No reply. I say it again to which Eloise replies ‘i’ll have lemonade’ to which I say, ‘that’s not what I asked’. So, I just decide that one small chipst is our only requirement…easy! All of a sudden, Brian pipes up with ‘I wouldn’t mind a burger. Lets go in’. He NEVER suggests that, so, we go in to the nearest Maccas for some lunch. Fraser and I sit down to wait, while the other two decide they’re going to use some weird machine to order the food. How did it go from one small chipst to this? So, I decide to just go with flow and grab the paper to see whats going on in the world. I decide to bypass the horrific reality that is Donald Trumps speech to the world and open up a random page. I look at the article and realise, we were meant to come to Maccas, this was no accident! The universe had designed this moment just for me. There, in front of me, on page 19 of the Herald Sun, a safe distance away from Trump, was the following article …

IMMUNE VESSELS IN BRAIN LINK TO AUTISM

Now, anyone who has followed an alternative health/gut/immune lifestyle for their Autistic child knows not only innately but through years of hard work and research that Autism is inextricably linked to the immune system. The problem has been that mainstream medicine, mainstream science and especially mainstream media, all like to pounce on such inferences and put us whacko’s back in our places. The big surprise here was two fold: first of all, the information contained in the article was new to me, which is always exciting, and second, the fact that this was appearing in the Herald Sun! This is proof that these ideas that were considered ‘out there’ not so long ago, are thankfully becoming more and more accepted. Maybe now we’ll get somewhere!

So, what did the article say? Basically, new immune cells that have been discovered in the meninges of the brain, have an effect on social behaviour. Interferon Gamma, is an immune cell that is produced in response to a virus or bacteria. As Fraser has a major problem with Strep bacteria changing his behaviour, this was a massive breakthrough for me which helps to complete more of the big Fraser picture. When they interfered with Interferon Gamma (IFN-gamma) in mice, their social responses completely changed. No IFN-gamma, no social interaction, they were wall flowers standing on their own. Switch IFN-gamma back on, and it was mice party time! For something so seemingly simple, this could have a profound outcome for Autistic individuals and other neurologic disorders. So what next? Well of course that meant going back to Google University (like I ever left). So, I typed in ‘how to raise Interferon Gamma’, and to my delight, something really simple came up. So simple, that I had to laugh out loud. The good old probiotic, beloved of parents of Autistic children the world over…Lactobacillus GG, aka Culterelle. I have never been able to find out if this probiotic lowered or raised histamine, so I have and will continue to assume its neutral. Fraser has always better on Culterelle, and this could well be the mechanism, raising IFN-gamma in the brain! He has only one per day, but considering a new packet arrived at my door on Friday, i’m going to up his dose and see what happens. I won’t be expecting a miracle (not that I would knock one back), but, how can I not give it a go?

It is so reassuring to see articles like this coming up, and to know that behind closed lab doors all over the world, people are working to solve these big puzzles. I am grateful to the scientists, the nutritionists and of course, the little party mice for this invaluable leap forward. Keep up the good work dudes!

Lots of love,

Kitty xx

Is Autism Inevitable?

Over the years, I have had many many conversations with many many people about Autism. Some are wanting information, some are just curious, and mostly people are kind and caring. I have noticed though, that one question gets asked more than others. The question is…’are there more kids with Autism these days or is it just diagnosed better’? And my answer is this ‘there are more kids with Autism these days and it is diagnosed better’. I’m not trying to be wiseacre, but to me, that seems to be the answer! With that said, I do have to add one thing. Yes our diagnostic tools are better these days. There are more tests available, and a whole lot more information than there used to be. Of course there are more diagnostic categories than there used to be. It’s not just Autism anymore, it’s Autism Spectrum Disorder (ASD) and within that spectrum lie a vast number of extreme’s and diagnosis. For example : PDD (Pervasive Development Disorder), SPD (Sensory Processing Disorder), Childhood Disintegrative Disorder (CDD), Rett Syndrome, Aspergers Syndrome and of course Autistic Disorder. So indeed, there are a lot more possibilities for diagnosis, BUT, there are waaaaaaay more children being diagnosed than ever before because there are waaaaaaaay more children affected than ever before. All you have to do to know that this is true is to think back to your own school days. Of course there were always one or two kids in the school that were ‘a bit different’, but now it’s hard to meet anyone who doesn’t know or know of, someone that is affected in some way.

Lets look at the possibility of why. 100 years ago, when statistically there was no Autism, what was different? The short answer is almost everything, but lets at least start with something that affects everybody, everyday…food. This is an obvious place to start when you look at the supermarkets of today. Basically, they had meat, vegetables (mostly locally sourced) a little fruit, grains in the form of bread and porridge, eggs, milk, water and perhaps a little sugar in their tea. Of course any treats such as biscuits and cakes were rare and home made. There may have been, for the average person at least, a little alcohol on the odd occasion. Fast forward to today, and while our diet may resemble the basics, it’s a safe bet that we all have a lot more sugar than just a little in our tea, probably more grains than vegetables from all of the pasta, bread, rice and breakfast cereals that we eat each and every day. Add to that, the hormones and antibiotics feed to the animals that we eat, add to that the grains, especially corn, fed to the animals that were never meant to eat grains. Add to that the bombardment of agricultural sprays on our fruits and vegetables, add to that the gmo’s, add to that the depletion of the soils from over farming, add to that the chemicals such as BPA added to bottled water and canned goods that we eat. Add to that preservatives, food colourings, flavour enhancers, gluten gluten and more gluten! Add to that things you can’t even freaking pronounce!!!

Now lets look at the environment we live in. 100 years ago, the population was much smaller than it is today. They were simpler times when people worked close to where they lived. The transport was much more limited than it is today, with bicycles, horses, trains and of course walking being the major ways of getting around. Fast forward to today and there are MILLIONS of cars clogging up roads everyday. If you live in the suburbs or inner urban areas, you can’t escape the sound of traffic, let alone, the bi-products of the traffic namely, cadmium, lead and carbon monoxide. Then add mercury from industrial fumes as well as countless other nasties, now add endless cleaning chemicals and antibacterial hand washes that contain liver damaging triclosan, add to that, heating and air conditioning, flame retardants on our pj’s and almost every piece of furniture we own and of course the biggest add of them all, electromagnetic radiation from power lines, appliances and wireless technology.

Lets have a quick look at the water we drink now. 100 years ago, it was as basic as it gets, fast forward to today and things have dramatically changed with the addition of fluoride and chlorine in the water, not mention the countless heavy metals and industrial waste that have polluted our water supply. There are so many more things that could be added here, but I think i’ve made my point.

So, what does this have to do with Autism? Well, I think when you look at the changes that have occurred in the last 100 years (and this is only scratching the surface), you have to wonder what effect does this have on the human body??? To answer that question, you really only need to look around and see the epidemics surrounding us. It’s on the news almost every day! Obesity, diabetes, cancer, heart disease, dementia and Alzheimers and of course Autism which now affects 1 in 68 children. In 1975 it was 1 in 5000!!! Growing up in the 70’s I don’t think i’d ever heard of anyone having autism or cancer, now, I know too many people who are suffering from these once rare conditions. It is happening really fast. Our bodies have evolved over 100,000 years. How are they supposed to adapt to this tidal wave of assaults in 100 years!!!! I believe that when industrial chemicals, food additives, petrol fumes etc, made their way into the environment, that our grandparents were affected. How could they not be? I believe that these affects were passed down to their children, who have now passed them onto our children and I will use my own family as an example, as this is why this post has any relevance at all. My grandfather died of bowel cancer and Alzheimers disease. My Mum was diagnosed as a child with Crohns Disease and in the last 10 years has developed Rheumatoid Arthritis, her twin sister in that time has been diagnosed with Lupus. Their older sister developed severe Rheumatoid Arthritis in her 30’s. Her daughter, my cousin, was also diagnosed with RA in her 30’s. My grandmother, my mum and her two sisters have all had thyroid problems. I won’t delve further than that for now, but of course, my interest peaks at my own son who has Autism, Intellectual Disability and PANDAS, which is an Autoimmune condition (Rheumatoid Arthritis, Lupus and Crohns are also autoimmune diseases). I believe the affect of these changes have been profound. I believe that our bodies and brains are the results of the cumulative affect of these changes. I believe that some of us, generationally speaking, have paid a fairly high price for these changes. I believe that while our bodies are truly incredible and are obviously capable of dealing with many things, gene’s have been switched on and off in ways that must differ from those 100 short years ago. (Please see my post ‘You MTHFR’). I believe that with all of this in mind, Autism and other conditions must be an inevitability. There are more than 200 chemicals found in umbilical cord blood. 200!!!!!!!! Babies are compromised in utero. Not necessarily through any fault of the poor mother, but from the environment we are living in. Children with Autism are the canaries in the coal mine.

So what is my point? My point as usual is to make people aware. We need to keep our minds open, we need to understand what we are doing and what future we are contributing to. We need to look further than the brain for answers. We need to look more at the gut and the liver, at what price they have paid and will keep paying. We need to not just look for an ‘Autism Gene’, but look for which genes are effected in a person with Autism. We have come such a long way in our understanding, but I think we have a long long way to go. You may not agree with my theory at all and thats okay. But after researching for ten years, it feels pretty obvious to me. As a parent, it is my responsibility to not only look after my beautiful boy, but to help my daughter have the best possible outcomes when she is old enough to have children of her own. This is my conclusion and it feels pretty logical. Now that you’ve read this you may truly understand why I made the title a question and why i’m off to get a glass of Sauv Blanc. Actually, I might make it a green tea instead 🙂

Take care,

Kitty

How I taught my ‘Who’ to type.

In January of this year, my ‘Who’, Fraser, was at a point in his life where frustration at his lack of ability to communicate, was causing him and us, an incredible amount of stress. All he wanted was to look things up on Google and Youtube, but he couldn’t always tell us what it was. He has a limited vocabulary, and sometimes he would say things like ‘Nemo’, if he wanted to look at Finding Nemo. He could say ‘Tigger’ if he wanted to look up ‘The Tigger Movie’, but there were things he wanted to look up that we simply couldn’t work out. You can imagine how upset he became, repeating something over and over, that we couldn’t understand. At times he would just sit and cry. It was utterly heartbreaking, seeing him so distressed. So, I thought, why not try to teach him to type? I had actually tried a few years before, but he had not been ready and/or willing. We had nothing to lose if it didn’t work, but as it turns out, it miraculously did. Here’s what I did…

The first thing I tried at my first attempt a few years ago, was to lock the computer with a password, which was his name. Whenever he wanted to use it, he had to type in F R A S E R. It was simply a matter of holding his pointer finger , and moving it on the keyboard from one letter to the next. Before too long, he was typing it in himself.

Fast forward to 2014…he remembered how to type his name, so I used the thing he was into at the time…’Toy Story 2′. I used the same simple process. I would hold his pointer finger and press each of the letters one by one, while saying the names of the letters, numbers and keys at the same time. T O Y SPACE S T O R Y SPACE 2 ENTER. Within a couple of hours he was doing it himself. We stood there in awe feeling proud and amazed which was an awesome feeling, but the look on his face eclipsed that by a mile. He looked proud of himself. Something that, as far as i’m aware, he’s never felt before. He also looked like he couldn’t quite believe that he made Toy Story 2 images come up on the screen. It was like the world had just opened up for him.

So from there I continued with different movies and things he was interested in. He began spelling them out loud, and when we asked him to spell some of the movie titles, he was verbally able to spell them for us. He developed a voracious appetite for books and the alphabet. He has got some books that he’s had since he was little, that we used to teach him to spell every day items (listed below). I would hold his finger on each letter and say it out loud, then say the whole word, then point to the picture and say the word again. Before long, he could spell every word in every book. He was coming along in leaps and bounds.

I spoke to his teacher at his special school about what we were doing. She asked me if we wanted her to persevere with trying to get him to learn to hand write or if we wanted her to use that time to build on his typing. He is never going to write, so I jumped at the chance, so now he does typing at school instead. He also has a sentence written out about his day, he has a copy of the sentence cut up into individual words, that he has to put back together.

The next thing I did, was to make him a dictionary of words that he likes to look up, the names of all the people in his family, food and drinks that he might like. He has now learned the words, and can spell all of them back to us. We have now progressed on to doing the same with the Magic 100 words. So far he has completed his golden and red words! The dictionary is simply words in categories, such as our names, movie titles, foods etc. I typed them up on the computer, printed them and put them into a display book.

When I look back at the journey that bought us to this point, there are a few things that I just happened to do right along the way! The first thing was to play vocabulary videos, from the time we worked out something was wrong. So from the time he was almost 2, he was watching them and enjoyed them on a daily basis. The other thing was the word books I mentioned previously. We would go through the words and if we could, would show him a real item to match. For example, if the word was ‘shoe’, I would show him a real shoe. If the word was ‘comb’ I would show him a comb. If possible, I tried to buy items that closely matched the pictures. I did the same thing with the vocabulary videos. I also had alphabet books that I used. I had a variety from the local bookstore.

I am happy to report that he is still continuing to progress. He has an iPad, so he sometimes looks things up that he wants (he somehow manages to find things on youtube, by just touching links that he sees). He will pause on the title screen, then bring the iPad to the computer and copy the writing from the screen into the search engine onto the computer!! These gadgets are opening up a whole new world.

My sister and I have created an app called ‘Emotion Fonts’, that allows children (and adults) to select a font that represents and emotion, such as anger (bold black font), happy (apple green type) and sad (light blue soft looping font), to allow communication and intent to be clearer for everyone. The app can be used as a little whiteboard, or you send your message via email, Facebook and Twitter which we hope will help teenagers especially.

If you are reading this, you maybe looking for ways to help your child communicate better. I truly hope this information helps. The best advice I can give is to just give it a shot! Apart from some possible disappointment, there is not much to lose at all, and look at the gains you and your child might make.

Below are a list of items that I have found that have been particularly helpful. Apart from the Emotion Fonts app, I am not affiliated with any of these products. They are simply the ones that not only have worked for us, but that Fraser has actually loved and I highly recommend them.

Baby Bumblebee Vocabulary Builder DVD’s. Search http://www.babybumblebee.com

Baby’s First Library. We have ABC, Words, Numbers, Animals, Food, Vroom and School. They are available at Amazon, and are great because each page has one large picture with the word written underneath. We have had these books for years and have certainly stood the test of time. I have put his name stickers over the ‘Baby’s First Library’ title, as I don’t want him to feel anything other than pride, but these books as therapy and a teaching tool are fantastic.
Find them here : http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Dstripbooks&field-keywords=babys+first+library&rh=n%3A283155%2Ck%3Ababys+first+library

The app, ‘Emotion Fonts’ is available on iTunes for $1.29. We would have loved to be able to make the app available for free, but building an app is quite an expensive exercise, and we have not allowed any advertising on the app, so as to keep it simple.
Find it here : https://itunes.apple.com/au/app/emotionfonts/id779305002?mt=8

Just to finish, I want you to know that Fraser is 11 years old. We never thought he would be able to do this, and he has. His paediatrician was blown away by the fact that he can do this. When I told him about at our last appointment he said “you know, if you had have asked me if I thought Fraser would be able to type, I would have said the chances aren’t good, but we should obviously never underestimate these kids’. It’s so true. You just never know what is going on in those minds of theirs (what we wouldn’t give to know)! It doesn’t matter how young or old your child is. It doesn’t matter if they have Autism and Intellectual Disability like Fraser, or just one or just the other. It’s worth a try. Our hope for the future, is that this new skill will build and he will be able to tell us the things he is feeling. For years I have asked one question, over and over, and I hope one day, if he can’t tell me what it is, he can type it. Hopefully soon when I again ask him ‘what’s your favourite colour’?, he’ll type me the answer. When I find out, i’ll let you know 🙂 I truly wish you all the best. Don’t hesitate to leave a comment and let me know any success stories. I’d love to hear them.

Kitty
xx

Ice Storm in a Tea Cup

Most people have heard of the term ‘Refrigerator Mother’. A not-so-charming term used widely in the 50’s, 60’s and 70’s to explain the autism enigma. Basically, back then, they didn’t have any idea what caused Autism (not much has changed has it), so someone came up with the profoundly terrible idea, that mothers who were cold and unloving to their children, caused the condition in their child. I just can’t imagine what these poor mothers went through. Not only did they have a child to deal with that had an endless amount of issues, no internet or anywhere to go for information for that matter, but they were blamed for the child’s condition because they didn’t care for them enough. By any standard, that is brutal and we like to think that things have moved on from then, and i’m sure for the most part they have. However, after hearing about a recent study, my immediate thought was, here we go again.

The study, called Project Ice Storm, was done in Quebec in Canada and followed the progress of women who were pregnant during the 1998 ice storm. During the storm, some families were without power for up to 45 days, which would be indeed stressful. The researches have followed the progress of the children born after that event and have come to a conclusion of sorts. High stress levels in mothers cause ‘autism like symptoms’ and ‘asthma like symptoms’. Now, I am the first one to agree that stress is very underestimated and can certainly wreak havoc, however, I would like to have seen more made of this opportunity. For example : Did the researches take any other factors into account? Were the mothers deprived of fresh nutrition and only eat highly processed and preserved foods for extended periods of time? Did they have fresh water or did they drink water from plastic bottles that were high in BPA? Were they subjected to fumes from alternative forms of heating for the duration of the ice storm? Were the mothers advised to get, and did they indeed get flu shots or any other boosters during this time? Factors such as these are just as important, if not even more important. And of course there’s always my favourite that seems to get left out every step of the way…family medical history.

As I heard it reported in the mainstream media, “the Canadian researchers have found a possible cause of autism…maternal stress”. The headline on Science Daily read “A new study finds a link between prenatal maternal stress (PNMS) and the development of symptoms of asthma and autism in children”. The researchers themselves stop short of claiming an actual link to autism, but use the phrase ‘odd autism like symptoms’. Stress in the long term is without a doubt harmful, but in the history of humanity, there have been countless and endless stressful events. Seriously, there have been wars in the Middle East for generations, and while an Ice Storm maybe stressful, can it compare to a war? There have been famines in Africa for decades. Are these ‘odd behaviours’ unusually high in Ethiopa amongst children of the famines? Wouldn’t Autism rates have been steadily rising for thousands of years if maternal stress was the cause? Shouldn’t we ALL be autistic by now?

Studies like these are incredibly important and will ultimately help the autism puzzle be put together, but we must make the most of these opportunities as they arise. With the outrageously high number of children being affected with autism and other developmental delays, researchers and the media must take this seriously. Blasting carelessly on the evening news that mothers stress levels are to blame is attention grabbing for all the wrong reasons. I heard the headline at the beginning of the news and sat glued until the end to find out what has caused my sons autism, only to find on the surface, that it’s my fault. I sat for a while feeling deflated, guilty and outraged at the same time. A heady mix that made me immediately want to reach for the Sav Blanc. I decided to dig a little deeper, and that’s when I found out about the study. It’s sometimes hard to work out where the research outcomes end and the media slant begins. Blaming mothers without further research puts even MORE stress on women and diverts the attention from other factors. Mothers need support, and lots of it. Telling a woman that her stress levels could cause her child to have ‘autism like symptoms’ is not going to lower her stress levels!

As parents, especially mothers, when we find out our child has any kind of condition, we often automatically blame ourselves and search for reasons as to what has caused the problem. Of course we shouldn’t blame ourselves, but it is a natural thing to do. The last thing mothers need is to hear, all these decades later is that they are at fault. If there are things future mothers can do to limit or eliminate the chance of having a child with issues, of course that should and must be reported, but only after much more careful, thorough and considered research. I think it’s of utmost importance to not pay attention to these headlines and internalise them as truths. And always remember what Stevie Wonder said? ‘When you’re movin’ in the positive, your destination is the brightest star’.

Kitty xx

Sibling Chivalry

Being the parent of an Autistic child can be a roller coaster ride. Sometimes it can be thrilling and exciting like the really cool new ones at Movie World. Other times you feel like you’re on the old rickety one at Luna Park, wondering if you’re going to survive the experience, while you’re hanging on for dear life. You can, and do run the gamut of emotions from depression, sadness, frustration, happiness, pride, love and fear. And that can be before lunch. Depending on the day of course. As a parent and a grown up, you certainly learn to expect challenges as you travel down the highway of life. It happens to everyone. Of course, sometimes we encounter more challenges than we ever thought we’d have to, and for the most part we cope, and for the times we don’t, there’s always good old Sav Blanc. But what about siblings of Autistic children? I was lucky enough to grow up with a brother and sister that I could not only relate to, but got along with. We mucked around together, we laughed together, we played together, and we picked on each other mercilessly, but always in the spirit of fun. When we encountered difficulties, such as our parents divorce, we were there to support and look out for each other. As the oldest sibling, part of my job was not only to nurture my younger siblings, but also to pave the way for them to do cool stuff at a much younger age than I was able to. This was not a job that was entrusted to me, it just came naturally. My daughter has a very different experience with her sibling and it’s one that I really struggle to imagine. At 12 years of age, she is 19 months older than 11 year old Fraser, and while we have been careful to not put responsibility for his care onto her shoulders, she carries that responsibility just the same. Being female, and the eldest (speaking very generally here), seems to bring out a very maternal quality. From the time he was born, she took it upon herself to help take care of him, and she has never wavered in her commitment to him.

But it must be difficult. It must be frustrating and upsetting at times, to not have someone she can journey through her childhood with the way I did, and although she doesn’t know any different, she must feel it. He is there along side her, but they cannot converse, they cannot joke and they cannot cry on each others shoulders. We often say ‘we have two only children’. BUT…they do have a relationship. They do laugh together, they do dance together, they hold hands if we’re out walking, they do have fights (usually physical), and they most certainly press each others buttons. They are brother and sister after all! But they do love each other. In fact I would go so far as to say, when they were younger, each was the others’ first great love. This relationship exists now though, because of the efforts of this very remarkable girl. She will hug him when he’s hurt, she will get him food when he’s hungry, she will draw him pictures just because she wants to do something for him, and when he is upset, even though he is physically bigger than her, she will piggyback him around the house until he is smiling and happy again.

Last year, for her birthday, she had a slumber party. Fraser decided to barge in and put his ‘Bananas in Pyjamas’ DVD on. Before we could stop him, these lovely girls stopped what they were doing, sat down with him and told him how much they loved the Bananas. Of course they didn’t love the Bananas in Pyjamas, but they pretended to for his sake. He all of a sudden had 12 big sisters looking after him. I was so amazed, delighted and heartened to see these girls put his needs before their own. They didn’t have to. They could have complained, they could have made derogatory remarks or they could have ignored him, but they chose to include him. Girls tend to get a bad rap at this age for being bitchy, but we overlook the kindness and nurturing that these lovely creatures inherently posses, and selflessly share. These girls have been extraordinary with Fraser on many occasions before and since. But it is his sister who loves him unquestioningly day in and day out through all of the good times, the bad times and the worse times, that makes him a very lucky boy. While he has been given his fair share of difficulties to deal with, he has been blessed with his own little guardian angel. She of course does it tough at times, and will vocalise it in no uncertain terms that it’s unfair, but that’s okay, she’s allowed to do that! One thing is for sure though. She is certainly living in extraordinary circumstances and is picking up invaluable experience as she goes and I can’t wait to see what she does with it as she grows older and even wiser. In the second week of prep, she diagnosed a child in her class with Autism before his teachers and his parents and of course, she was spot on and has done this many times since.

While we can never expect to know what its like for the siblings of Autistic children, we must never forget to give them their dues. We must listen to them and be patient with them. Eloise, has often been a ray of sunshine on days of darkness even though there are times when it gets to her. She cares, and it shows, and I don’t know what we would do without her.