Family – 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.

Folate Schmolate

When I was pregnant with my munchkins, I took care of myself and did all of the things I was supposed to do. I didn’t drink alcohol, I tried to eat healthy (not easy with morning sickness), I took my giant fish oil capsule, which, for a girl who doesn’t like the taste or smell of fish, was no easy task at the best of times, but with morning sickness it was almost impossible. Blahhh. And of course, I took my pregnancy multivitamin…with folate. Of course, we all know now that low levels of folate when a woman is pregnant can cause neural tube defects in your new born, which is something that none of us would risk, especially when taking a simple folate supplement can avoid that all together. All pregnant women are told to take folate for this reason, and of course, we do it for our children and ourselves. To avoid problems in women who don’t supplement, the government require food and beverage manufactures to ‘enrich’ their products with folate and thiamine (vitamin b1). Thiamine is added to avoid a nasty condition called Beriberi which is caused by overconsumption of carbohydrates and depletion of B1.

We are all aware for the most part to some extent, that food is not what it used to be. We know this don’t we? As an example, take my beloved Sauvignon Blanc, or Merlot. Were they traditionally made with the preservatives that they contain now? Nup. They have not always contained sulphites, as alcohol IS a preservative. Has meat always contained the growth hormones that it contains now? Nup. Cows and sheep all managed to just grow just fine on their own, thank you very much, if they were given grass, water and sunshine. So what we have, is a situation where food and livestock have been manipulated over time to be vastly different than they used to be. I remember an ad growing up that said ‘bread is the staff of life’ and for hundreds of years this may have been true, but now that the bread is enriched, it may be the exact opposite for a large percentage of people.

That problem is that approximately 45% of people can’t break down this chemical into the form of folate that the body can use, so it then becomes a toxin. Did any government check with the population before they loaded up every product that contains flour with these extra ingredients? Nup. It’s really a cheap and easy win for the government (I really don’t want to sound like a conspiracy theorist, but i’m getting fed up with this crap). They pass a bill saying ‘put folate into flour that is used for baking and babies won’t get spina bifida’. They look like super heroes. They just need capes and a leotard with a great big ‘F’ on the front. We of course would let them think that the F stands for folate 😉

A lot of people are affected by a Single Neucleotide Polymorphism (SNP) of the MethyleneTetraHydroFolate Reducatase gene (MTHFR). A what? Big long words for gene mutation. What is this gene mutation? I have written about this before in my post ‘You MTHFR’. MTHFR is a gene and an enzyme that breaks down folate into the usable form ‘l-methylfolate’ which then is used for several cycles that included methylation (detoxification) and the B4 cycle (neurotransmitters). In a percentage of people, the mutation is such that they are unable to break down the folate into a usable form, so not only are they low in folate, but are now more toxic because the supplement then becomes a burden that the body has to deal with. If you’re on the pill the news is not good. The pill depletes folate in the body, and makes a bad situation worse. Gluten has been the big buzz word for the last decade and I couldn’t agree more that there is waaaay to much gluten around, but this flood of folate has been overlooked and could be causing a lot a people a lot a problems that they don’t realise. What if, in taking my supplements and eating enriched foods, I have inadvertently helped to create or exacerbate another condition???? High histamine, or histadelia, is linked to this gene, and can run in families. Is it possible that I have contributed to my own histdelic state, causing severe morning sickness and bombarding Fraser’s growing body with harmful levels of folate and hormones that my body could not break down or detoxify, which have in turn caused some or all of the issues he has today? It seems not only possible, but very likely. He had hallmarks of histamine issues from the time he was a month old, such intestinal discomfort and eczema on his face, which with good ol’ hindsight seems quite obvious now. So from where I stand today, looking back over this chain of events, it seems painfully obvious that I HAVE in fact at best, made things worse than they would have been, and at worse, caused a situation that might not have been. It might not be as cut and dried as that, but it might be. I am not one to look back with regret though, as regret serves no purpose in this instance. I keep my head high and look forward. I look forward to a time when scientists are able to stop a worm hole collapsing in on itself and making time travel possible. Only kidding….sort of.

Are you wondering what the hell this has to do with Autism? Well, my investigations constantly bring me back to a figure of 98%. It is estimated the 98% of people with Autism have a MTHFR gene mutation. That is a pretty staggering number. The list of health conditions linked to this gene don’t stop at Autism. It is really mind blowing. I won’t overwhelm you with it here, but it’s worth Googling or Binging or Yahooing.

So, solution? Come on Kitty, what do I do then? For Fraser I get Oat sour dough that does not contain folate from the local health food shop. Yes it’s expensive, but I think of it as an investment in his health rather than an expense. The thing about it is, is that he is better on this bread. Of course the other option is to make your own bread. I mean from scratch…even the bread mixes at the supermarket already contain folate. Argh! Be aware of everything that has flour in it from breads to biscuits to pastries. It’s everywhere! Avoid packaged foods as much as possible and add in fresh fruit and vegetables as much as you can. Not easy with a kid with Autism! I guess the thing is to not be too stressed. Just do what you can and be aware that it could be causing problems. The best thing to do if you can is get a test for the gene (doing it in the next few weeks), and you can supplement with the active forms of B Vitamins. I use a website called iherb which have very affordable supplements and shipping. Just type in ‘activated b vitamins’ and you’ll have a range to choose from that will suit your budget. It pays to do this slowly as it will begin a cascade of detoxification processes that could be uncomfortable. I will post on this in the coming weeks. Otherwise, do the easiest thing…stay away from processed food and stick to food naturally high in folate. Ah, if only wine were high in folate 🙂

Take care,

Kitty. xx

Link to my app – https://itunes.apple.com/au/app/emotion-fonts/id779305002?mt=8

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

The Mother Load

As Miranda Hobbs in Sex and the City 2 succinctly put’s it “being a mother is hard”. Charlotte then replies “Oh my God, it is so hard, and I have full time help”! I know it’s not a great movie, but I love it anyway. When it was on at the movies, I went to see it three times. Every time that line was uttered, I silently wept. Just to hear someone say it made me feel so much better. I know it’s just a line from a movie, but it is the absolute truth. Whether you’re married, or a single mum. Whether you have an only child or multiple children. Whether you have neuro typical children or special needs children and whether you have help or not, what I have found is that it doesn’t matter. Being a mother is really hard.

I think it’s always been tough, but I think there are so many more expectations these days. We generally work whether we want to or need to, PLUS cook and clean, PLUS do all the running around to the kids endless social and sporting events. When I was growing up, the neighbourhood was crawling with kids to play with. All you had to do was walk out your front door. My daughter and most of her friends don’t have that, they need to be dropped off and picked up. Then, we’re supposed to be healthy, and look good, and have hair like in a shampoo commercial, and drink some wine ‘cos it’s good for your heart but not too much ‘cos it’s bad for your brain. We’re supposed to be on committee’s and go to working bee’s and, well, the list is endless. In the 70’s there just didn’t seem to be that many problem children that I could see, so I had absolutely no reason to think that when I got married and had kids of my own, it wouldn’t be as easy as it was on the Brady Bunch. Hahahahahaha. That’s the universe having a laugh at me 🙂

Over the years as I have gone through trying times, I have experimented as much on myself as I have my son, to try and keep us on an even keel, and while vodka, lime and soda was one of my fave’s for a while, it’s not a good choice in the long term. Man it got me through some tough nights though! Here is my list of more appropriate ways to keep yourself going.

Kitty’s list of things that keep her sane and appearing relatively normal

Of course my heading is tongue in check, but very true at the same time. You see, a sense of humour is so important, and if you can’t laugh at yourself or your situation find something that will make you laugh. A movie, a tv show, a book, anything! My fave is Modern Family. I just put on an episode and i’m always guaranteed a chuckle.

Herbs – There are many stress busting herbs to try, but I have found two that work for me really well. I know for a fact I have high cortisol (stress hormone), so I got myself some Holy Basil which does indeed lower cortisol. High Cortisol can be life saving in the short term, but dangerous if chronically high. It can prevent your body from making the female hormone progesterone. In this day and age we have waaaaay to much oestrogen, so it’s important to balance it out with progesterone. I’ll talk more about oestrogen later. Holy Basil just makes me feel so much calmer and I can’t be without it.

Siberian Ginseng is an adaptogenic herb which means the more you take it, the better your body can cope with stress. The only down side with this is that you can only take it for 6 weeks at a time. You can have a break and go back on it though. It really does lower my anxiety when i’m on it and I feel better able to cope with unexpected things.

Meditation – Stop rolling your eyes! I do a lazy meditation which means, I turn on the iPod and let my favourite mediation play as I drift off to sleep. My fave is Louise Hay’s ‘What I believe and Deep Relaxtion’. It’s an audiobook so I forward straight to the meditation which is about 20 minutes in. I listen as she tells each part of my body to relax, and it always does. I got it off iTunes, but there are so many others. Pick the one that is right for you.

Vitamins and Minerals – When you are stressed your body burns through certain vitamins fairly quickly. The one’s that are most helpful to supplement with are zinc, b6 and magnesium. There are many zinc and magnesium supplements available, and I usually just use whatever is going. Zinc and magnesium are each responsible for over 300 reactions throughout the body, and should never be underestimated. For b6 I only use the active form called Pyridoxal 5 Phosphate or P5P. This form of b6, spares your liver the job of breaking it down. Long or short term stress can cause a condition called Pyroluria, and these supplements, along with good quality omega 3 fish oil are essential. I prefer brands that have their fish oils in triglyceride form and are also certified heavy metal free such as Nordic Naturals.

Vitamin C – It is impossible to leave good old vitamin c of this list. In orthomolecular medicine, vitamin c is a powerhouse that can aid so many conditions. In this toxic day and age, a powerful antioxidant like vitamin c is a must. It also lowers histamine, if you happen to have a problem with that. While I am at it, another powerhouse in orthomolecular medicine is niacin. I don’t take it myself, but Fraser does, and he is better for it. It is great for combating depression.

Lower oestrogen – As I mentioned earlier, lowering oestrogen is a must. These days our bodies are swamped by it. From xenoestrogens like BPA in plastic water bottles and containers, phytoestrogens from soy and other foods, the oestrogen our bodies make from our own fat cells, and that’s before the natural oestrogen our bodies are programmed to make! If you google symptoms of oestrogen dominance, you’ll be amazed at the list. The reason I am including on my list, is that it can cause extra anxiety especially as we age, so if you do nothing else, lowering oestrogen will help you on so many levels. So here is how I combat that…

Cruciferous vegetables such as broccoli, cauliflower, cabbage and brussel sprouts (blah), contain a chemical called indol 3 carbinol, which helps to break down oestrogen molecules. I take a supplement called DIM Plus that works really well. I also take Calcium D’Glucarate, which attaches to oestrogen and escorts it out of the body. You see, if oestrogen is not removed properly from the body, it can get re-absorbed in the intestines and do another lap around. Like you needed any more!!!! Following these steps, can also markedly reduce your breast cancer risk. Not a bat side effect eh? I then use Anna’s Wild Yam cream, to add in some progesterone. And last but not least…

Alcohol – I’ve saved the best until last. I love nothing more than sitting down with a Sauvignon Blanc, however, it’s far from an ideal choice, which is why I mostly drink Merlot. Red wine, has quite magical properties! Red wine (especially from Spain) is rich in Resveratrol, which, among other things, blocks a process called Aromatisation. Aromatisation can cause good hormones in your body, to be converted to bad forms of oestrogen. We can’t seem to get a break, can we? Of course there are herbs such as passionflower and chamomile that can do the same thing, but I prefer the vino.

I could go on and on and on, but that will do for now. You’ve probably heard all about putting your own oxygen mask on first? Well, it’s not just in an emergency situation that we should be doing that. We need to put ourselves first if not all of the time, then a good percentage of the time. We all work hard and deserve to be happy and we’ll be better parents for it. So get yourself a comedy, relax on the couch with your red wine. Look at that glass of red wine, and like Fat Bastard from The Spy Who Shagged Me, say ‘GET IN MY BELLY! And the cool thing is, if you’re doing all of the other good things, it’s good for you!

Kitty

PS : I have mentioned a few brand names in this post. I am not affiliated in any way with any of these products. They’re just the ones that work for me 🙂

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.

Why The Elephant?

I was chatting to a dear friend recently, who asked me about my profile shot, so I figured, I really should explain the Elephant. Well, if you’ve seen ‘Horton Hears a Who’, you’ll recognise the picture of Horton and his beloved clover which is where his ‘Who’ resides. There is a story behind it, which is what I thought i’d share with you.

Many moons ago, my little man was having a difficult time at his special school. Very difficult. It was difficult for him, it was difficult for the school and it was difficult for us as parents, and quite frankly, I could have done without it. But, as usual, the universe had us on the path to something better. Even though I hoped so at the time, I couldn’t quite see it. Growing up, we went to school without any issues, and if there were issues, they just got solved. I got up every morning, had my breaky, got dressed, went to school did my work and came home. Never an issue. I assumed the same would happen with my own children. Not only because of my own experience, but because of the Brady Bunch. God Mike and Carol made it look easy didn’t they? Any problems were not only promptly solved within a few days if not hours, but the kids then learned valuable life experiences and never went on to repeat the mistakes. If there were issues, Mike and Carol always stayed calm, let him or her know they were disappointed. Enlightened them about the problems they had caused and gave a fair but stern punishment, all in a calm, ‘radio voice over’ kind of way. They learned their lessons. They understood the repercussions of their actions. But the Brady children weren’t autistic. Ah, how different things would have been.

When your child is at the end of the line as far as education goes, the next step is home schooling, and for a child with Autism, that is far from ideal for many reasons. A lot of Autistic children, would be perfectly content to stay at home and get lost in their own interests, whatever they may be, so it is so important that they are taken out of their own worlds and be made to learn things they’d rather not, and to interact with others. They NEED social interaction, they NEED to become accustomed to different settings and routines, and lets be totally frank here…Mummy needs a break. Seriously! If I had to try and teach him at home after he and I had only gotten 2-3 hours sleep the night before (this was before we discovered Melatonin), I think I would go a little insane, and not quietly either. There are some people who choose to home school and I truly salute anyone who takes on such a commitment, then there are those who are forced to home school as unlike us, there was no other option. I feel very deeply sorry for those people. We were faced with this possibility a few years ago when things were getting bad. As it turned out, Fraser has a condition called ‘PANDAS’ (Paediatric Autoimmune Neurological Disorder Associated with Streptococcus), we just didn’t know it at the time. He was obsessive and aggressive at school, yet not at home. I honestly couldn’t relate to the boy they were describing whenever we discussed his issues. Without going into all of the in’s and out’s, there were some very difficult times during that period. On one particular day, we were told he would be suspended if things didn’t improve. I just couldn’t believe what I was hearing. I felt like I had been attacked by Dementors from the Harry Potter movies, and there was not enough chocolate in the world the take that despair away. This was clearly a job for Sauvignon Blanc my friends!!! The day after the meeting, I was getting ready to go out to dinner with my lovely and understanding friends, but I didn’t want to go. All day I had felt blackness and heaviness descending on me and beginning to crush me. I am normally a positive person and I felt that I not only had no more to spare, but that I was in debt over my head. I felt like I was smaller and less significant than I had been before the meeting. I felt depressed. Not even the Sav Blanc could help me now. I was ironing my top but didn’t know why because I didn’t know how I was going to get to the restaurant let alone get through the dinner without curling up in the corner in the foetal position. Then a miracle happened. I am such a big fan of my little brain and I can say that entirely without ego, because it’s not something I can take credit for. It just works the way it works, and in moments like that, even a deep dark moment, it won’t let me stay there. It finds what I call a ‘hook’. Something to hang the sadness on which then removes it from my shoulders and lets me carry on not only as I was before, but with a new lease on life. While I was in the laundry ironing, Frase was in the lounge room watching his favourite movie. I became very aware of the words being spoken by the characters. They were poignant in a way I had never noticed before. Of course i’m talking about Horton Hears a Who. It dawned on me that like that beautiful elephant, I had a Who that I wanted to and needed to care for, I could hear my little Who even if no one else could. I knew he was in there and like Horton, no-one was going to convince me otherwise. Even if they put me a burning pot of bezel nut oil! I decided that anyone who couldn’t or wouldn’t hear my Who, was like the sour kangaroo. I started to see things differently in a instant. The light came on and I was suddenly on a new mission to prove to that kangaroo, that my Who was there and that he mattered and that he wasn’t just a ‘naughty’ Who.

Fraser has difficult behaviour, we know that and we do everything we can to manage it to the best of our abilities. As parents of Autistic children we are up against it, there is no doubt. The 90% divorce rate of parents of Autistic children pretty much says it all. We and our children need care and understanding because ultimately, we all want the same thing. We want calm, happy and productive kids. But, in the end, i’m glad it happened even though it got much worse before it got better. He was eventually suspended 3 times. It forced our hand. It forced us to move into a house in which we are ultimately much happier in, and to a school that is not only better resourced but has a better understanding of his needs. To them he is a Who. It also has it’s own pool. Its a win-win!! I always have the spirit of Horton with me. Like Beyonce and her stage persona Sasha Fierce, Horton is my alter ego, that keeps pushing forward and searching for answers. Horton keeps me inspired and reminds of how delicate my Who is, and why I do what I do and for that I am grateful. So for anyone out there doing it tough, no matter what your circumstance, I give this advice to you. Watch a kids movie. Even if you don’t learn a life lesson, you might at least have a giggle, and that will always make you feel better.

My name is Kathryn Horton, and I have a Who. I love my Who.

Kitty xx