supplements – 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

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

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 🙂

Lithium…more than just a really cool Nirvana song.

Okay, it’s also a cool song by Evanescence, but I just couldn’t fit that in the title. Anyhoo, i’ll get to that later.

My all time favourite movie is Apollo 13, not only because of the great acting, direction, music, attention to detail and because Tom Hanks is in it, but because, at its heart, the true story of Apollo 13 is a testament to what incredible things human beings can achieve not only when they want to, but when they have to. The differences between wanting to and having to can be vast indeed, but when the desire is there, great things can happen. The movie is obviously about the Apollo 13 mission to the moon in 1970 that ultimately ended up almost costing the astronauts their lives. Jim Lovell, the mission Captain, had been in an unexpected situation before and referred to it in the movie…

'I remember this one time. I'm in a Banshee at
 night in combat conditions, so there's no running lights on the carrier. 
It was the Shangri-La and we were in the Sea of Japan, and
my radar had jammed, and my homing signal was gone
because somebody in Japan was actually using the same
frequency and so it was leading me away from where I
was supposed to be. And I'm looking down at that big black
ocean. So I flip on my map light. And then suddenly zap
everything shorts out right there in my cockpit, all my
instruments are gone, my lights are gone, I can't even tell
now what my altitude is. I know I'm running out of fuel, so
I'm thinking about ditching in the ocean and I
look down there and then in the darkness there's
this green trail, it's like a long carpet
that just laid out right beneath me, and it was the algae,
right. It was that phosphorescent stuff that gets turned up
in the wake of a big ship and it was just leading me home. 
And... if my cockpit lights hadn't
shorted out, there's no way I had ever been able to see
that. So you never know what events
are gonna transpire to get you home'.

Yesterday, I took my kids shopping to the local shopping centre (‘whoa Kitty, livin’ large’! I hear you thinking), which, with a child with autism, can be fraught with peril and could be very aptly described as ‘combat conditions’ as the list of possibilities can be endless, from running away, to screaming (his sisters favourite…NOT), demanding ‘chocrat’ or ‘chipst’ at the top of his voice and heaven forbid anyone knock him, ’cause he not only has autism, but is afflicted with ‘indignation’ and he will give, bigger and better than he got if he’s in the right (or wrong) mood. In his defence, shopping centres are those mystical places that to some of us humans, are calling to us like the Sirens of myth and legend, while to others, they are like torture chambers that do nothing but inflict pain and discomfort. My husband is in that last category and he doesn’t have autism. So poor Fraser has been hit twice, not only does he have the big ‘A’, but he is also, just a chip off the old block!

Anyhoo, before I tell you what happened I will go back a few weeks, as I want to keep you in suspense. As I have previously mentioned, in the last few weeks of school of 2013, I started to treat Fraser for his high histamine by giving him large doses of vitamin C, calcium and a half a Zyrtec everyday and the results were nothing short of miraculous. That was then. What has been happening is that he has had a major exacerbation of symptoms, which is common as you are pulling histamine (or any type of toxin) out of tissues to be removed from the body. He has been very difficult to handle at times. He has ranged from just looking and feeling unwell to being so agro that he’d have Mike Tyson cowering in the corner. This is soooo difficult to watch because he just looks so tormented. So, when you see your child turn from calm, happy and settled with no negative behaviours, to one that is raging, agro and out of control, what do you do? PANIC!!! I couldn’t call for help on the radio, and the lights had shorted out, Like Jim Lovell, I was flying blind! I know you’re not supposed to panic, you’re a mummy, that’s not what you’re supposed to do…at all, but I just couldn’t help it. A year ago he was ‘asked to leave’ his special school and here we were, a year later, possibly back where we started dealing with the same unmanageable behaviour. Now, I knew as I dealt with the Histamine, that this could happen, but sometimes, as a Mummy, the logical part of me is not in control. The funny thing is, if I saw someone else’s child going through the same thing I know I would say ‘don’t worry, this will get better’ but I couldn’t do it for myself in the panic mode I was in, and as much as I love my hubby, he’s hopeless at that. His big advice when he saw me stressing was ‘stop stressing’. Yeah right! So, my panicked but curious Capricorn self kicked in and began what i’ll call a ‘fractal quest’, one that has branched of the side of the main quest. So, I stayed up researching late into the night, and something crept into my head that had made it’s way there before during another difficult time. It was the thought that ‘maybe there’s something else wrong here’. As difficult as it was, I started to look at childhood schizophrenia and bipolar, and while he has some overlapping symptoms (which is very common), I wasn’t convinced either way. As I said, I was in panic mode, and I had to find a way to help him settle. He had been on a very low dose of Risperdal (an antipsychotic) for the past year, and there was no way, we were going to raise the dosage. I hated giving it to him at the best of times, but when he was agro, it seemed not only pointless as it clearly wasn’t working, but dangerous to continue. I searched and searched, like Captain Lovell looking for something, anything to guide him, and then, I found my green carpet laid out for me! While it wasn’t as clear as that at the time, the sound of it glittered like hope in my head. Enter ‘Lithium Orotate’ (now the title should start to make some sense). I started researching the overlapping symptoms of Autism and Bipolar and the supplements for children and adults with these overlapping symptoms when I read about the Lithium Orotate. Just to be clear, Lithium Orotate is a naturally occurring mineral and nothing to do with Lithium Carbonate that is prescribed by psychiatrists for Bi-Polar. I started reading reviews and blogs by other parents and sufferers and it sounded fantastic, in fact, it sounded waaaay to good to be true but, as I said, I was in panic mode, and with a tingle of hope, I searched and found some locally available, and had it express posted the next day, and made the decision not to give him the Risperdal anymore. I had wanted to get him off the medication since the first dose! But he needed it at the time.

I don’t know much about Lithium Orotate and I don’t for a second want to pretend that I do, I just want share the journey of what i’m doing, and I invite everyone to do their own research before putting anything into yours or your child’s body, however, I felt that I knew enough at that point to give it to him safely. What I do know it’s that Lithium Orotate works particularly well on Autistic children who have high levels of toxic metals (as Fraser most definitely does) so, I nervously gave him the first dose. I really was nervous, because I’ve had bipolar friends on Lithium and I know how much trouble it can cause. I had to get my head around the fact that this was different. I cut it in half, put into the good old peanut butter and watched nervously. Now, 30 days is what I read is the time it takes to build up in the system and have a noticeable effect, so I was only watching to make sure nothing negative happened to him. Within an hour, he seemed a little sleepy, but so calm!!! He just seemed happy, like some of that inner tension had just evaporated! I was perplexed, and still am that this happened so quickly! It has been five days and he is a new boy… again!

So, shopping centre story. I said to little man, ‘we have to go to the shops and get some things, then we’ll get you some chips’ (have to sweeten the deal somehow), so off we went. For the first time, he got into the car without a twirly ( tape measures he like to twirl around his fingers, he doesn’t go anywhere without one and hasn’t for years), no iPad, ipod or even a book. He calmly got in and put on his seatbelt. We went to the supermarket and got some food, and he was fine. We went to Ishka because it’s his sisters favourite store, and he was fine. We went to the food court and as I lined up to get his beloved ‘chipst’, proudly watched as my children calmly sat at the table and played together. He finished his chips and happily sat and waited for us to finish our lunch (he’d normally run off as soon as he was done and yell ‘cart’ to go back to the car), while smiling and looking around at everyone and everything. We then went to Kmart, where he excitedly bounded around looking at books and DVD’s. He got himself a Lion King book and happily carried the bag of shopping back to the car. So lets re-cap…busy supermarket, check! Small overstocked, pungent smelling, brightly coloured specialty store, check! Noisy, pushy, overcrowded food court, check! And hugely overwhelming department store, check! It may not sound like a big deal to you if your child doesn’t have Autism or sensory issues, but for us it was incredible. I got to feel like a normal Mummy! It was so joyous watching the kids walking hand in hand through the centre. As much as I enjoyed watching them enjoy each others company, I wanted to shout out to everyone in the food court ‘check this out’!!! Once we got home, didn’t pick up a twirly until 3 in the afternoon.

At this point I don’t know if it’s just the Lithium, the lack of Risperdal, or the lowering of the histamine, but he’s happy again, and that’s all that matters for now. If he wakes up agro again tomorrow, I know that peace is possible, and the right balance will make it happen again, as there is more than one green carpet. As I have been researching, I have found something incredibly interesting. Risperdal (the potent brain shrinking anti psychotic drug he was on) is a potent anti histamine!!!!! I have to wonder, if it’s course of action in the year he was taking it, has been not by affecting his dopamine levels as it was prescribed for, but lowering his histamine. It seems that with all of the other histamine lowering supplements, that the risperdal’s method of action in Fraser’s body was not only no longer needed, but causing the very aggression is was supposed to curb!!!! The great thing is, that none of it was in vain, as without this course of events, we wouldn’t be riding the green carpet today. I’m not a big fan of medication, but as i’ve said previously, it is often necessary. What is the point of doing all of the other things to help, if you can’t get the stress levels down! There’s not a lot of point to dragging out excess histamine and toxins if the adrenals are going to be shrivelled up little prunes by the time your done! Cortisol and stress MUST be kept low as much as possible and there are many herbs, supplements and medications that reduce stress. Finding what works is such a hard slog, but ultimately worthwhile. It seems for now, that things are continuing to look up again.

There is one thing final thought that I want to leave you with. In the midst of all of this, I wrote an email to Fraser’s pediatrician outlining his behaviour, but I never sent it. I saved it to drafts and didn’t think about it again. Two days ago, Fraser took his Dad to the computer, opened up the emails, and went straight into the drafts to the email about him. He wanted his Dad to delete it. We don’t know how on earth he knew it was there. He certainly wasn’t around me when I wrote it, but he somehow knew it was there, and wanted it gone. This child continues to amaze me in every way. It seems that he has been craving foods for many years, that contain the most natural lithium…bread (grains) and potatoes (nightshades), and since starting on the Lithium, his need for large amounts of these foods has markedly decreased. At this point all I can say is…’watch this space’. I’ll keep you posted,

Kitty xx

Probiotics for Histamine

Probiotics are an essential tool in your Autism arsenal. Most, if not all Autistic children, have digestive issues, and allergies/sensitivities. If you’ve been researching it for a while, you’ve probably come to the conclusion, like a lot of us, that Autism is a gut, not a brain disorder. What is little known, is that there is a second brain in the gut. It produces neurotransmitters, just like the one upstairs. Now, i’m not saying that there aren’t things going wrong in the upstairs brain, but we need to fix the ‘gutbrain’ first. When you think about a drunk person you can get your head around it. Are they walking funny, and talking loud and slurring their words because of something that has happened to their brain? Yes, they are, but it didn’t start in the brain. The behaviour is a direct result of something they put in their mouth, that went through the liver and digestive system, then altered the way the brain perceives the world around it and the way they behave. The input altered the output. If you use that analogy with Autism, you can see why it’s so important to fix the gut first.

So probiotic basics. There are many different strains of probiotics available and they all do very different things. At the moment, I am treating Fraser for high histamine, so this is my focus at the this point. Below is a list of different probiotic strains with what they do, and whether or not they raise histamine, lower histamine or are neutral. If you give a probiotic that raises histamine to a histadelic child, then even with the best of intentions, you are going to make it worse.

Before I give you the info, I must make the point, that giving probiotics should not be taken lightly. You must start slowly and build up slowly over time. Children, especially Autistic children are very sensitive, and you can cause major die off symptoms such as eczema, rashes, diarrhoea, vomiting and flu like symptoms, so slow and steady dear friends!

HISTAMINE LOWERING PROBIOTICS

L. Plantarum

Produces natural antibiotic Lactolin, synthesizes L-lysine which is antiviral. Can preserve nutrients, vitamins and antioxidants. Eliminate toxins, including S.aureus (golden staff) from foods.

B. Infantis

Stimulates production of immunomodulating agents such as cytokines. Bacteriocidal activity in Clostridia, Salmonella and Shigella.

B. Longum

Plays a role in preventing colonization of invading pathogenic bacteria by attaching to the intestinal wall and crowding out unfriendly bacteria and yeast. Produces lactic and acetic acids to lower the intestinal pH and inhibit undesirable bacteria. Reduces gastro issues from antibiotics.

HISTAMINE NEUTRAL PROBIOTICS

L. Acidophilus

Natural antibiotic, enhance immunity, antimicrobial against strep, s. aureus, salmonella, E. coli and candida albicans.

L. Rhamnosus

Helpful in preventing Urinary Tract Infections, protects agains strep and clostridia. Helpful for those with lactose intolerance. Down regulates hypersensitive reactions and intestinal inflammation in people with eczema and food sensitivities

HISTAMINE RAISING PROBIOTICS

L. Bulgaricus

L. Casei

L. Reuteri

There are many other probiotics and I know Culterelle is a very popular probiotic, but after much searching I am unable to determine at this stage if it, or other strains are raising, lowering or neutral. I will of course keep searching.

The products I am using at the moment are :

Jarrow Formulas – Ideal Bowel Support. Gluten free L. Plantarum 10 billion live organisms. From iherb. Use my code FUR941 for a discount on your order.

Nutrition Care – Lactobac. B. Longum 750 million organisms and L. Rhamnosus 14.25 billion organisms. (Must be posted and kept refrigerated, so leave an esky at your front door with a note for the postman if you’re not going to be home). From Kingsway Compounding Pharmacy in Sydney.

I truly hope this helps someone out there. For my part, I feel great getting it out of my head and onto a blog where it might do somebody some good.

Good luck on your own quest, and i’ll keep you posted 🙂

Kitty. xx

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