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Cooking again!

Posted by Sarah on Nov 18, 2020 in Uncategorized

For those of you who are long time readers you’ll know that every Christmas Beth becomes obsessed with Here Comes Christmas candycanes. Before you ask, it’s from a My Little Pony story. And no, it’s not possible to get one. Or to make one the way she wants. But… it still doesn’t stop her from asking constantly for one. every. single. year. When she was originally doing art with Ash Beth asked and Ash and her made a fabulous large paper mache one with glow in the dark glitter and Ash filled it with goodies for Beth for Christmas. There was a lot of planning and thought went into it. None of it mine mind you! The issue is that we can never make the real deal because it’s magic!

Yesterday Beth had cooking with Lochie again and of course she asked to do something along the here comes Christmas candycane idea. So they made chocolate muffins with sprinkled candy canes on the top. Of course I forgot to buy the peppermint extract. And the icing sugar! I found a packet mix for cupcakes so they used that icing instead and, the muffins tasted delicious without the peppermint flavour. When Lochie went to move his car I found Beth licking the spoon and bowl with it all over her face! She looks really happy with herself here!

It’s been a long time since I’ve seen Beth enjoy herself as much as she is in this photo. She loves doing things with me such as pedicures or going to the movies or taking the dogs for a walk. But if I take a photo she forces herself to smile. She used to sing songs and dance around and as she’s gotten older a lot of that enjoyment seems to have gone from her. That’s why I was so excited when I asked her to smile and she let out that beautiful beaming one. Hopefully things are on the up for us all. I want her to feel like smiling more, not just because I’m telling her to.

On the supplement front I truly believe that her Omega Q brain health tablet has been helping. Her mood has been so much better since beginning it. I have only been giving her one a day, even though it says 2, so I will up that when I get the new delivery next week. Her conversation has been better, she’s been asking me questions and truly wanting clarification in the answers. She is suggesting things we can do and really looking into them before suggesting. And she’s been great at work by all accounts. So it’s a big tick for that one! I’ll increase this one and assess before I add other supplements but so far this one’s a winner!

Please let me know if you are keen on trying any of these out and I’ll send you a link. As always, every supplement and treatment is different for every individual, just as all of our kids have individual personalities and reasons that they are the way that they are. All we can do it trial and error at times but so far so good for us with this particular product.

 
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Start cooking!!

Posted by Sarah on Nov 4, 2020 in Uncategorized

I’m rather excited now that things are opening up again! Yesterday Beth started doing cooking with an organisation called I Hate Cooking. I found them via facebook as I saw they are an NDIS service provider. Beth enjoys cooking but we don’t often do it together. I contacted them and they sent a lovely young man out called Lochie. For their first cook they did scones because it’s nice and easy. That gave them a chance to get to know each other too. Beth is pretty pleased with her goodies. I loved the taste too, though they didn’t agree with the new dentures I got on Saturday and I very nearly had my bottom ones fall out in front of our lovely new friend! Here’s a piccy of the 2 together! BTW I told them to take their masks off for the picture, they were social distancing at this coffee and hot chocolate stage!

The other exciting news is that Beth’s lovely art teacher is coming back! Beth loves art so much and really enjoyed making all her creations as I know a few of you enjoyed when we did the calendar in 2018. This year has been such a shitshow for so many things and Beth has gotten used to doing not very much, so the hope is that there will be something each day now to keep her busy.

As far as the next stage in supplements go we did try the greens in her shake as it’s so very good for you. She could taste it in that though and, even though she drank it, has politely said no thank you every time I’ve asked since. Seeing as I can’t have actual food atm I’m going to make myself up a nice smoothie for lunch with lots of goodies from our lines so will pop some in myself to see what it tastes like then make one of them for Beth. I’m thinking frozen raspberries would make it yummy for us both. So hopefully next time I write I will have more news. As always, progress takes time but it’s worth it! Have a great week everybody xxx

 
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DNA testing

Posted by Sarah on Oct 26, 2020 in Uncategorized

I saw a conference for the new business I am doing and one of the things that they are joining forces with is a company who do DNA testing to help with what vitamins and supplements are lacking in a person. I’m pretty excited about this as Beth has always been a bit of an unknown in these areas. I know that she has gut issues, really we all do in this family. I get tummy aches even at the thought of going out at night, Beth’s anxieties always present in her tummy as do Bridie’s. It would be great to know what will actually work rather than doing things by trial and error! Here is an excerpt of what I read today which sounds fantastic.

Trait 43: Social & Relational Interactions. we test more than 200 DNA variants. This trait looks at your genetic profile associated with prosocial behaviour, empathy and compassion to others.Relationships are fundamental for the structure and function of society and are a key factor in the well-being of people. Knowing your genetic makeup can direct you to implement certain strategies to develop better social skills.

So far on the omega Q supplement Beth seems to be communicating better. Behaviourally she’s still fixated on Paul and his cough which frustrates the hell out of me. I’ve now taken a hard stance on it and remind her once only that if I hear her being mean to Paul again that her tablet will be taken from her for 24 hours. I have had to do this once which, as you can imagine, made my evening such fun! From crying and begging to her speaking on my behalf. “Yes Beth, of course you can have your tablet back, you’re a good girl!” in a high pitched voice while blubbering. It sounds funny writing it now but at the time it’s awful! But, I’m of the belief that no means no and, while times may sometimes be negotiated, the punishment will not. I know this when I do it and I brace myself for the tantrums. The outcome is however that she knows I’ll follow through with what I’m saying so she does what I saw. Sometimes!

She’s back at work now, 2 days a week. I am happy that we actually got good funding this year through the NDIS so, when the zombie apocalypse eventually ends,we will be getting her back into art and have lined up a cooking school to come out and cook with her once a week. I’m rather looking forward to her cooking dinner on occasion. Though the more likely scenario is daytime cooking thanks to dinner taking second place to Malcolm in the Middle that she simply must watch, despite the fact that we have the whole series on hard drive!

We’re walking the dogs daily and Beth’s doing her personal training once a week too. So all together I’m pretty happy with how things are travelling. I’m going to trial her on a probiotic supplement starting from tomorrow, it’s in powdered form and has the equivalent of a kilo of green veggies in every serve! I’ll let you know how we go, I know a few of you have issues getting all the good stuff into your kids due to various issues.

Have a wonderful week everybody! x

 
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Second go

Posted by Sarah on Oct 15, 2020 in Uncategorized

hello there lovely readers! Last time we spoke I was talking about the drink that I was going to try Beth with, a lovely calming drink. Unfortunately it didn’t seem to agree with Bethie. It is an adaptive drink, meaning it zeros in on what the body is having issues with, so it could have been helping in other ways. As she was getting tummy aches though I decided to stop it for the time being.

The good news is that I have other products that I am going to try and, if and when they work I can then go back to the drink. She has always had gut issues so I believe if that’s not quite right then things won’t work as they should. I’ve started her this week on an Omega3 supplement. It’s to help with brain and heart function. Interestingly I’ve already seen an improvement! Mainly in alertness in conversations. In the past if I said something to her she wouldn’t bother responding if it didn’t actually interest her or suit her needs. Typical teenage behaviour really! I said something to her last night and she responded quite ‘normally’ and I was pleasantly surprised!

I am pretty excited about having an array of products at hand that are all natural and I can use with Beth without worrying about side effects. Long time readers of my blog will know that I try pretty much anything that isn’t non invasive and painful. We’ve done metal detoxification, allergy elimination, homeopathic remedies, you name it, we’ve done it! I’m a big believer in helping issues within the autism, therefore helping improve actual physical ailments, rolling over into mental wellbeing. An atypical person has the knowledge and awareness to explain how they are feeling, physically and mentally. Some people on the spectrum can do this too, absolutely. In our case, Beth may just say she’s feeling yucky, or may just appear teary and we don’t actually know what the issue is.

We also have the problem of things that often work with others don’t work with Beth. When trying homeopathy she had the opposite reaction to what she should have. I made sure not to go to somebody advertising in the local paper (yes it was that long ago!) but went instead to the college where they teach homeopathy. I know that some locals would be brilliant at it but I also know it can be claimed that they are very experienced and have done a short course. I wanted somebody who lives it and is invested in it. Anyway, it didn’t work unfortunately. Same thing happened when she was 1 and we went to the UK. The doctor prescribed medication to help her sleep on the flight and we should have clearly tried it beforehand. She ended up wired the whole bloody time!

Anyway, we had tried lots and lots of things. Looking promising when faced with a list of alternatives. Looking quite sad when we got to the bottom of the list and realised that all avenues that weren’t quacky, expensive or dangerous were finished. So I am excited to be in a situation that I can have access to products that help with various aspects of her autism. Gut health, brain health, probiotics, anxiety helpers, lots of bits and pieces. But as usual, one thing at a time! So far the brain health one is working and she’s just at half strength so far. So will keep you posted.

Now, I’ll share a quick Beth funny to finish off. I know you’ve missed them! I went in to give Beth her hot chocolate and kiss her goodnight. I went to close her blinds and she said no, I had to keep them open so she could still see Caleb. I asked who Caleb was and she said he was a spider. I asked how she came up with the name and she said ‘He told me his name!” Of course he did, silly Mum!

Look after yourselves! It’s Friday eve! Have a great week xxx

 
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Natural Calming

Posted by Sarah on Sep 18, 2020 in Uncategorized

I’ve been looking for a couple of years now for a cannabis oil company in Australia who I can legally and medically access. As in, in conjunction with Beth’s doctors as I don’t want to trial something when I don’t really know what I’m doing. I’ve read that there are huge benefits to using it and I love the idea that Beth could wean off of her medication if her anxieties are lessened.

Beth’s anxiety (to me anyway) is the root of her autism. Her behaviours have always stemmed from anxiety. Her fight or flight response, her ‘ruling the house’ behaviour, all of it stems from sensory sound issues and the anxiety of the possibility of hearing a noise or being startled by something that has happened before.

The other issue is that if these things aren’t discovered and stopped right at the beginning then Beth just reacts more and more and the original issue is either forgotten or irrelevant.

Take for example her elephant issue. When she was a toddler she loved Sesame Street. During the show she occasionally would run out of the room for a minute then back in. I really didn’t think that much of it. Over time though these leaving the room incidents got longer and longer. After a while she stopped watching Sesame Street. Then it started happening in ads. This is in the old days where ABC Kids were only on until 10am. This was my time out and she was doing my head in! As we know, the ads are frequent on ABC kids. There might be a 5 minute show, an ad, another 5 minute show and so on. She’d be peaking around the door to see. By the time Bill came along she had basically abandoned watching ABC kids at all. Then all of a sudden she got like it with Channel 10! I realised what the problem was but it stemmed so far back! There was an ad on 10 that had people pressing buttons as if on the screen of the TV. And one of them made an elephant noise. Long story short, Beth was avoiding ABC kids in case there was an ad for Sesame Street, in case Oscar the Grouch was in the ad, in case Oscar’s pet elephant was in the ad, in case Oscar’s pet elephant made the trumpeting elephant sound! OMFG!

I was so pleased that I realised what it was. We took a trip to the zoo, along with ear muffs and ear plugs and visited the elephants. This was a few years after the original issue and Beth actually didn’t have a problem with the noise anymore. So I could talk to her about this, saying how good it was that she was good with the elephant noises because it meant that she could share Sesame Street with Bill and Bridie so they could all enjoy it together. I was careful not to let her know that she was scared of it as I didn’t want to make a big deal out of it.

She is still like this with her obsessions. Paul has had a cough for years, we’re really not sure what it is. Beth noticed this not long after Dad died and was really worried about him. This has now developed into an avoidance of Paul in the sense that she wants him to stop making any noises and every night comes out to the lounge to tell him to take his medicine, that she’ll run him a bath, that she’ll get him a drink of water. Often in tears. I suggested that he sees a specialist as it’s continual, and he now has a referral, but of course nothing is open due to lockdown. It’s sweet of her but it’s also really draining as it happens every night.

Anyway, sorry to go on! My point is that I want to do something to lessen her anxieties which of course compound her behaviours and affect her life in so many other ways. Hence the cannabis search. Doctors are loathe to research it at this early stage within Australia, except for in some cases, epilepsy, which it has shown can make such a huge difference. Of course advances in other countries mean that it’s commonly used for individuals with anxiety and autism. I did get some drops which helped a little but I don’t know the correct doses, nor how to transition her from her medication to only the drops.

Recently I’ve started selling for a new company. It’s the type of thing that I can do from home, it’s selling the products and gaining my own reps to then do the same. It’s what they call a side hustle! I have done party plan type selling in the past, because I love a product, but I hated the party side of things, going out at night, doing presentations, all of it really made my own anxieties arise and made me feel quite ill. I decided that I’d try some of the products for myself first, then if they worked I would then promote the actual products while trying new ones, taking it slowly. I didn’t want to be selling something that I didn’t actually know if it worked or not. One is a mask to help my skin and lessen wrinkles which is divine, I absolutely love it! The other is a daily drink to help calm anxieties, stress and mental alertness. I’ve really noticed a huge difference in myself. The things that annoy me so much about people (read husband!) and situations don’t annoy me as much anymore. Don’t get me wrong, they still really shit me, but I just don’t care as much now and certainly don’t react in the same way as I used to. The whole house is calmer as a result. Which got me thinking, I wonder if it would help with Beth? So…. I gave her her first drink yesterday and she really enjoyed it. Hopefully in a few days I’ll notice a difference. If it works with her like it has with me it will be amazing. If not I’ll be so disappointed but at least I’ve tried. There are other products that I would like to try with Beth also, but I’ve always been one to do one thing at a time with her. Otherwise, how will I know which thing has actually helped her!

So… hopefully I will be back on here again in a few days to tell you all about how well she is doing! Have a great weekend everybody! x

 
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2 years absence!

Posted by Sarah on Jun 21, 2020 in Uncategorized

Wow, I didn’t realise how long it’s been since I wrote on here. I was talking to a friend who I had met through the blog and she had said that she went to show a friend and it was gone! I realised that I hadn’t given my new email address, which I’ve had for about 2 years and it had all lapsed. Panic stations and being told that it had all gone, deleted, kapoof. I contacted my old school friend Paul who had set it all up for me. He guided me through the dummies guide to getting it all back and yippee here it is! It panicked me so much that I have now vowed to get back on track and update our life with Beth again. Thanks Jo for the reminder and thanks Paul for helping me, a woefully crap internet person!

One of the reasons I hadn’t written on here is that I’ve gone back to work. I now work in a Post Office 5 days a week, 5 hours a day. I really enjoy it (after the initial ‘I have no idea what the hell I am doing’ – still there sometimes!) and it’s put everything else in my life on the backburner.

The other reason is that I’ve found our life a little sad at times as far as Beth is concerned. She had lots of problems at work, which we’ve all persevered through, and is having lots of hangups that we don’t seem to be able to get a handle on. We upped her medication which made her put on a lot of weight. I know that’s not the be all and end all but it’s not good for her health or wellbeing and she doesn’t have a lot of energy or even seem particularly happy most of the time. She has real problems with her dad. She has had a bee in her bonnet pretty much since my Dad died which is nearly 6 years now. Where the hell has that time gone? Around about that time Paul developed quite a bad cough and it really hasn’t gone away. She went from being worried about him dying too to now constantly telling him to go to the doctors and to take medicine and to drink water, and I mean ALL the time. It’s just horrible as she shuts herself in her room and if she hears him cough she starts crying. Yawning or any other noises other than talking set her off often too. We’ve seen various specialists and it doesn’t seem to help. She saw a psychiatrist who neither of us particularly liked, who tried her on a medication that made her lactate! So no more of that. I really want to try medical marijuana but it’s still a little taboo. I believe if her anxieties could be lessened then it would help. She’s a bit like it at work too, telling people to turn their music off or something on the tv because she can’t cope with certain noises (still the laughing) or whatever else they’re doing that’s annoying to her. The last thing is that we’re now in the process of changing her medication. A) because it doesn’t seem to be working anyway and B) because she’s put on so much weight in the last year because of said medicine.

This year I decided to check out some tafe courses for art for Beth. She really isn’t keen on being with others with disabilities and I figured her funding may allow for somebody to take her to a mainstream course. It’s in the city which means that they catch the train from home and go to 1 class a week. She seemed to enjoy it but then Covid happened and I had to cancel it. They were doing remote learning which just wasn’t suitable. Her support worker couldn’t come here because she was home schooling her kids and isolating and I was at work. Even if not, the whole point was for her to be independent of me. She needs hands on, not working from home. She did an art class once a week from home for a few months which was wonderful but that stopped and she really misses it. Anyway, we’ll start up the tafe one again probably in 4th term if restrictions are eased then.

Beth turned 21 this year! It was a bit sad because we isolated her due to her predisposition for getting asthma whenever she gets a cold. I was so worried about Coronavirus as she is in the high risk category. So she was home for much of the time that the other kids were home remote schooling and Paul was home working. So the year has been a bit of a nothing really.

I finished my personal training course at around the time that coronavirus hit so haven’t been able to start seeing clients yet. I have a gorgeous young girl lined up to work with but with isolation it just hasn’t happened yet. Plus, I am working 5 days at varying hours so never sure of what times I can commit to. I have signed up to learn Auslan so I’m excited that I will hopefully be able to communicate with my non verbal clients if they know any signing or any deaf clients. I am doing some online life coaching if anybody needs anything! My new website is www.changeofhabitfitness.com.au There’s not a lot on it at the moment because I’ve not done much yet, but I will track my progress as I go.

I’ll let you all know more often how we are all going. Sorry it’s been so long! Life does indeed get in the way at times. I hope you are all well. Stay safe! xx

 
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Just another day at the office

Posted by Sarah on Apr 30, 2018 in Uncategorized

Just wanted to share some more photos that Loo sent me today from Beth’s working day. She’s certainly enjoying it. It was funny though. She’s a tad obsessed with Steffi and Liam from Bold and the Beautiful at the moment. I think because she knows I like it so she wants to have something to talk to me about. It’s a weird storyline. Steffi slept with Liam’s dad Bill and of course found out she’s pregnant. The tests show it’s Liam’s child (let’s just wait and see if there’s any switcherooni there) and Beth’s argument is that Liam should just forgive Steffi as it really wasn’t that big a deal! And she wants to know what they’ll name their daughter when she’s born. And she asks everybody she meets. So when I picked Beth up tonight, Loo was laughing and saying that she thought our life was really muddled and that she was getting far too much information. Especially when she heard that Steffi had slept with her father in law! Luckily she figured it out, otherwise who knows what she would have thought of our family! Beth’s at least guaranteed to bring a laugh! Here’s today’s shots xx

 
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The Zoo

Posted by Sarah on Apr 26, 2018 in Uncategorized

So, as written last time, Beth was going for a trial at the zoo. This week she had her first day. We went and did the trial and I must say, I was a bit worried. All of the other participants have been in some sort of employment situation, all are about 25. Beth is the only one who is straight out of school so therefore doesn’t have that work ethos yet. On the way to her trial we had a chat. I explained that she had to step up for the trial, she had to do what she was asked to do and not get distracted by the animals when sent on a task. She agreed (of course), probably more to shut me up than anything! In a way it would have been good if she had worked somewhere, especially if it was boring, so she could understand that this job is much more suited to her as far as the animals are concerned. But she’s been used to doing what she likes for the last 4 months so it made it hard.

The first job was to cut up carrots to give to the animals. Now I must admit, we don’t really offer much experience in cutting foods up. I do worry about these things, but she managed pretty well, with a sharp knife too! It wore pretty thin though. She didn’t realise she had to fill a bucket. So she cut up one carrot, cutting bigger and bigger slices, then said ‘I’ve finished!’ Loo (one of the owners, along with Steve) said that no, the whole bucket had to be filled up. When Loo’s back was turned Beth filled the whole bucket with the bag of carrots! Cheeky shit! Anyway, she did some of it. Steve took her off to feed some of the animals and reported back that yes, she did get tired of the work part pretty quickly and just wanted to visit with the animals. Steve was pleased though that Beth wrote down her task list herself and is such a good speller and writer. There were quite a few tasks to do. She even helped get the frozen baby chicks out of the freezer to feed to the kookaburras and owls. Once defrosted she even fed a couple of them. I wouldn’t have done that! There’s frozen rats for the snakes too but she hasn’t done them yet.

Steve and I had a chat and he said he didn’t think she was ready to do 3 days in a group situation yet. So the compromise is that she can do 1 day a week with 1 on 1 funding for a few months and then, if she seems to enjoy it, and it works well for them, she can go to the 3 days in a group. As we got the equivalent of 4 days of funding for group based activities we chose to combine the 3 days there. I’d rather she work somewhere that she really enjoys and am happy for her to start 1 day a week too. After we had a cuppa she got back to work and was actually really good.  She was wanting to show me around and she looked really happy!

On Monday she had her first day. We had gone and ordered her uniform which has the name of the place on it and the fact that it’s a nocturnal zoo. here’s a link to the place if you want a squiz? It’s called A Twist of Willow. It’s a bed and breakfast and the guests get a night tour of all the animals. I told Loo and Steve that we may come and stay over one night so we can do the tour and Steve said we can come and do a tour one night anyway. So I’ll wait ’til Beth has been there for a little while so that she can introduce us to all the animals. Loo very kindly sent me photos of Beth and some of the animals. She really looks the part! I’m so pleased for her, I hope it works out. It’s so easy for her to be lazy which is what she wants to do. But Loo and Steve are great with her and there was only one other participant there on Monday, plus they had a Vet on board so I think it was a really good day. Here’s a few photos of our gorgeous zookeeper!

 

 
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NDIS Update

Posted by Sarah on Mar 14, 2018 in Uncategorized

Well it’s March already! I’ve been doing online shopping as it’s Beth’s 19th birthday in 2 weeks. She’s growing up way too fast!

I had a phone meeting with the NDIA last week. At last! I had the call on Wednesday to book it in for the Thursday. During the original phone call, I asked if we should know exactly what Beth will be doing as, due to not having a plan, or the funds to book her into something, I didn’t know what we qualified for. They were really helpful and said that if we have a rough idea of what we wanted to do, and pricing for that, they could be really flexible with the funding. So for example, if I want to get her into a group type of program, we can apply for the funding for that and transfer to a different program if that one turned out not to be suitable.

I had spoken briefly with a chap who had advertised on a local page on facebook, wanting zookeepers. He runs a bed and breakfast which has native animals as well as other sorts and was setting up a type of program for people who had an NDIS plan. I had called him, really excited as Beth’s passion is animals, but concerned about the fact that we didn’t have our plan in place yet. He said to call him when we were closer to that. As that was a couple of months ago, and there was a lot of interest, I didn’t hold out much hope. I called him after the initial conversation with the NDIS on Wednesday afternoon, explaining that we were having our planning meeting on Thursday morning and if there was any possibility left of Beth joining them that I would love to factor them in. I am so pleased that I did! Yes, he had had a lot of interest but for various reasons some people were not necessarily suitable or not as interested as their parents seemed to think they would be. He was happy to meet with Beth the next afternoon!

On Thursday morning I had my phone meeting with the NDIS. It went really well. I’ve heard horror stories, and, let’s wait and see what I actually get in our package, but they were really open to everything I said. And in fact, suggested more things. So for example, I spoke about the zoo position. It’s three days a week, and I’d like Beth to do one day a week somewhere else, perhaps at the media studies school that she did last year. The NDIS worker asked me how she would get to these places. I asked if there was something we could factor in for transport. And if not, I guess I could drive her. He said that now that Beth is an adult that wasn’t my responsibility anymore. That if she was in school when applying, and I was asking for help to get her to school and back that it would probably be knocked back because any parent has to get their child to school. The whole reason for the NDIS is to equate what the current situation is, plus the NDIS, to allow for what any other person could do. So if Beth isn’t able to catch public transport then they will fill the gap. They said there is a fund for transport and I will apply for a taxi card for her which means she could get taxi fares at half price. If I find a cheaper way though I will ask for that. To get to YourDNA is easy as it is on the train line. So they put in for 3 hours a day to have somebody come to our house and take her on the train, and back home again!

It even seems pretty easy and flexible. You can choose who manages the funds. So if I was to manage them I would pay for things and invoice NDIS and be reimbursed. If they were to manage them then it’s all out of my hands. If a third party was to manage them, they are sent the invoices and they send them on. Originally I had decided to self-manage smaller things such as her personal training. This is only funded because the issues she has are because of her autism, as in poor gross motor skills. Anything that is managed by the NDIS has to be via an NDIS provider. So as we would have to change personal trainers I said not to worry as we’re really happy with ours. But if it is managed by an accountant, or by myself, we can choose who our provider is. So in the end, I decided to put it all in the hands of a third party provider, whose fees will be part of our package. That way we have the flexibility that we need with our providers. They also put in for respite of 3 hours per week, which can be saved up. At this stage I said I didn’t need it, but if she makes friends at the zoo program or wants to start going to social groups it would be very handy to have somebody take her. Even to the movies!

After the meeting, we went and looked at the zoo. We both fell in love! It’s amazing, and right up Beth’s alley. The owner said pretty quickly, “she’s passed the first hurdle, she really does love animals.” Beth is the type who would ignore a person and zoom in straight for their pets! She was introducing herself to all of them. Many of them are nocturnal so Beth didn’t get to see them. One of the jobs will be for the staff to cut up the food, then they’re having cameras installed which will be live, so when they’re at home they can watch as the animals wake up and eat the food. They asked Beth which her favourite animal was. She said all of them! He told me that they were having a big barn built and as people were coming and having trials he was seeing which were their favourite animals and getting some of them in. So if quiet time and petting were needed they could go to the barn (supervised of course) and sit with the rabbits or miniature pig. The owners are husband and wife and have worked in the disability field for over 25 years. And they have a trainee vet on staff. It’s a bed and breakfast so one of the chores is to answer questions of the guests about the animals. I told them that Beth loved to research so would love that side of things! It’s a 3 day a week program with a crossover day on Wednesdays when both groups get together. So Beth would go on Mondays, Tuesdays and Wednesdays. On a Wednesday they have a social day where they go on outings to places such as Healesville Sanctuary where they will get ideas for new animals to add and how to build the enclosures. They’re passionate about breeding endangered species too. It’s just perfect for our girl! So they’re calling me to organise a day next week for her to do a trial. Then once her funding is through she can start the program properly. She even gets to wear a khaki zoo shirt like the Irwins! If the trial goes well we’ll buy her an Akubra hat and some cool blundstones for work! I’m so excited. I’ll keep you posted as to how we go!

 

 
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Hello 2018!

Posted by Sarah on Jan 26, 2018 in Uncategorized

Well I see that it’s been since October since I’ve written. Woops, sorry! Life has been hectic and I’ve got a spare moment so I thought I’d sit down and catch up with what’s been going on in the world of Beth.

I know the blog is called autistic children, but our girl isn’t a child anymore! She’ll be 19 in March and she’s no longer at school. In fact she’s currently doing nothing! School sent a referral last year to the NDIA to get Beth on to the NDIS. Probably mid year if not earlier. I called them in September to explain that I hadn’t had a call to have our assessment meeting and was told that they had no information there at all. They sent me our more forms which I filled in, including a doctors report. I called them and called them and by the time December came they said that there was a 4 month backlog and we wouldn’t even be getting our meeting until term 1 this year. So Paul messaged our local politician who called them, who called us. The call I got this week was to approve us to go to the next level which is approving us for an assessment meeting. The problem is that I need to know what level of autism she is. This is apparently on the diagnosis paperwork that I have no bloody idea where it is, and she was diagnosed 16 years ago! I asked via a facebook help status and have been told that this level will be on the paperwork that the school sends to the NDIA to get the ball rolling. So… I’ve spoken with my contact at Beth’s school who will check it all out on Monday and let me know.

For my overseas readers I’ll explain. There is a new wiz bang organisation system called the National Disability Insurance Agency. They’ve taken over funding for people with a disability. The scheme is called the National Disability Insurance Scheme. Hence the confusion between NDIA and NDIS. It’s said to be wonderful for our people as it will cover things such as respite, day programs, some transport, even accommodation and other long term goals. It’s just come out though in our area so it cuts out any other funding that Beth would have been eligible for. Her school is in a different zone than we are which means that the other students there are still using the old funding system. So the school haven’t dealt with anything yet to do with the NDIA. We were hoping to have our assessment meeting at the school to try to help their coordinator to get her head around how the whole system works too. It seems to be very unorganised at the moment and I’ve heard some horror stories. You can self manage the funds, or have the NDIA manage them, or appoint a 3rd party to manage them. One of the issues I believe there is, is that the assessment isn’t done with the school, as other funding was done in the past. As a school does many funding applications they know the right wording, and they have somebody to help them navigate and get the best funding for each individual child. And it takes any emotion out of it. The new system is based on parent answers. Parents who naturally want to show their child in the best light they can. Who may think of something that their child has done ‘wrong’ and not want to share that, even though it may be one of the things that decides how much funding they get.  And, some parents with children with special needs, have got special needs themselves. Not to mention the amount of people who have English as their second language, so there are barriers there also. Hell, I’m finding it daunting enough and I sort of get how the systems work. So there will be many kids left high and dry with no chance of funding. Then there are ones like us who are told that there is nothing happening for the first term of the year. If we’d have done the assessments earlier, when Beth was still at school, (if the system was out then) it wouldn’t have been an issue because she would have been at school during the day. As it is she’s home with me now. Of course she loves that! And I’m lucky that currently I have a job that I can work from home with. Many parents aren’t so lucky though and I really feel for them! Anyway, that’s our big debacle…

In other news, Beth graduated and did a lovely speech, surprising others I think as she does keep to herself. For some reason she punctuated it with sniffs and throat clearing though, I think she’s got so used to pretending she’s sick when at school that she just went with that! I was pleased as money was a bit tight and I was loath to spend another fortune on a dress that would never be worn again. Lucky, she fits into some of my clothes now! So she wore a dress that I’ve only worn once or twice and of course looked gorgeous!

Beth also completed a creative writing class at Your DNA, the media studies school that she was at one day a week. We booked her in there 2 days a week this year too but have unfortunately had to put it on hold until we can get this funding thing sorted. Here she is at the class book launch. She looks pretty professional doesn’t she?!

So for this year we’re still both doing piano and gym. She loves gym. Piano –  not so much, but too bad, it’s what we do! I’ve got a few plans up my sleeve. One of which I’ve talked about before; opening a gym for teenagers and adults with a disability. My business partner Eloise and I are assessing what different options we have at the moment, and what path we are going to take to start the business and do some training. It’s a very exciting venture! The plan will be that once we open up our own business, Beth can work with us part time. Until then, I’m looking into what work she can perhaps do with animals, depending again of course on when we get the funding thing going.

I promise to write more this year. Last year was a bit of a yucky year for me, 2018 is going to be a fabulous one! I have big plans! School is back next week, so I’m sure a few of you are excited. I’m not looking forward to it, I’ve really enjoyed my kids this summer so don’t want to go back to a routine. Though I don’t have to do school runs any more so that’s very exciting! Speak soon! xxx

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