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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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Same Sex Marriage

Posted by Sarah on Oct 10, 2017 in Uncategorized

I find it ridiculous that I even have to write those words down. Same Sex Marriage. Or as it should be known – Marriage. My regular readers will know that Beth turned 18 in March. We got letters in the mail reminding us that it’s time to sign up for voting, a thought that was a little scary and almost a little silly. I am not a political person by any means and don’t know half the politician’s names let alone what their titles are. Unless they’ve done something ludicrous, entertaining or benefiting me in some way (Kevin Rudd and the silly payment he gave out to families thankyou very much) then I don’t really care to know anything about them.

 

When this stupid plebiscite came into existence though I knew I had to make sure Beth was registered in time. I was very conscious of not swaying her in either direction. If she wanted to vote no then so be it. I would be asking why and having a discussion but I wouldn’t be telling her she was wrong. Sometimes I don’t give her enough credit for thinking what she does though. She quickly ticked the yes box and said what many of us are thinking “Why wouldn’t I say yes, why can’t they get married?” And that is the crux of it all in my mind. I’ve raised my kids to be accepting of all. Obviously I’ve got a reason for this, my lovely Beth gets enough discrimination from strangers, I want her siblings to be her safe place. We’ve discussed lots in our long school runs over the years. Including homosexuality much to my father in law’s horror. We discussed this very early on, when we went to visit a couple and Bill wanted to know why the two ladies lived together. It was never a huge deal, it just was what it was. I never brought things up as lessons but if a question came up I would always answer it, even the sticky ones. I think their generation will be as blasé as my generation is about woman voting or people of different races getting married. I like to think so anyway. What gives us the right to decide on other people’s lives? Who makes us heterosexuals the experts in all that is marriage. Because, let’s face it, I know a few who are doing a pretty crap job of that. Who are raising their kids in a miserable relationship but hey, there’s a man and a woman so that’s ok! I also know several same sex couples who adore each other and their kids. Anyway, that’s my bit. And I’m glad to say it’s Beth’s opinion too. As I said, all of my kids are pretty cruisy and all just don’t get why we even have to vote. I’m pretty lucky with my babes!

 

So, we’re coming to the last term of Beth’s schooling. Thank goodness! She’s enjoyed the last few months, but she’s been doing work experience on Mondays which she seems to enjoy, and excursions on Tuesdays which she loves. So a good end to it all. Today they’re going to ACMI and in a couple of weeks they have some surf lessons. They went to the museum recently which she really enjoyed though she said the other kids said she is weird because she talks to the birds. Stuff them, I know adults who do the same. What’s the big deal? She obviously is comfortable in it. I said this morning they weren’t sure if it was ACMI or the MCG today and she said it didn’t matter if it was the MCG as she’d just talk to the birds. Good on you my lovely. She’s got graduation coming up, she’s decided she wants to wear pants this time so looks like we’ll be shopping soon. I love her in a dress but the reality is that she never wears them again so I may as well get something that she’s happy with.

 

We’ve made a big thing out of Beth being an adult this year. Bill is friends with the brother of the little girl who passed away with the flu a few weeks ago. Our doctor said it’s an awful year for the flu. Beth is terrified of needles, to the point that she even has fillings without pain relief! I took her to the doctors and we asked if it was possible to get a valium for Beth as well as the numbing cream. I told Beth that it was really important this year to have the flu shot and as she is now a grown up I wanted to include her in the decision making. So off we went to see the nurse with all 3 kids and Paul in tow to hold Beth’s arms while she had the jab, something that would take up to an hour in the past. Well, she was amazing! Gotta love drugs! She didn’t want it and said that but instead of watching she looked at her book and it was all over! I’m so very proud of her!

 

Well it’s a beautiful day here so I’m off to do some stuff! Beth has kept me honest, making me walk with the dogs and her every day. I am out tonight so we got up at 7 and walked them this morning. What a great start to the day! Have a lovely day peeps and thanks for reading! x

 
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Pauline Hansen

Posted by Sarah on Jun 23, 2017 in Uncategorized

Hello there! Sorry it’s been a while but I’ve been so busy since I went back to work and we’ve had lots and lots on. Beth is home sick again this week, when she’s not well it seems to last for ages. Which of course has made life difficult with work etc, having to have poor Bridie home for a couple of hours on Tuesday until I could get somebody to fill in for me at work for half of my shift. Unfortunately it’s a necessity at the moment, I know I’m not the only one to deal with these things, in fact I’ve been lucky to have been able to be at home for so long, but it does make it so much harder when your child has a disability. Nobody should have to ask their 12 year old to stay home to look after their 18 year old sister but sometimes life isn’t fair and you’ve got to do what you’ve got to do.

Beth is going along pretty well. Still doing 2 days a week at school, one day a week at media school, 2 days a week home with me. Still loving the gym which is amazing and wonderful. In fact when she wasn’t well a few weeks ago I checked that she would be ok to go and she said she still wanted to! Unfortunately this time she’s just not ok and we haven’t been not only this week but last week too. Luckily her trainer is fabulous and is ok with it all.

I got a lovely comment on my blog this week, reminding me that I have to check in once in a while! It’s by far the most commented post that I’ve done, right back when I was trying to decide whether to send Beth to mainstream or special school. Before we even knew we qualified. It’s a hard one. As I said to the lovely reader (who said she’d read from start to finish!), it’s such a personal choice. My regular readers know that we opted for special. In the end it didn’t really seem to work for us sending Beth to special school though. She’s one of those particular kids (adults) who knows she has autism but doesn’t really want much to do with others on the spectrum, or any kids with disabilities at all really. I don’t think she’s (what’s the word like racist but for disabilities? Is there even one?) against them per say, I think she loved her friends so much at primary school that she doesn’t get kids who aren’t like them. It’s probably because they don’t pander to what she wants and she can’t boss them around. One thing with special needs kids, there’s no bullshit, they say what they want to say, including Beth! This brings us to the problem of what to do with our Bethie. She’s pretty high functioning as far as mental capacity goes, but she’s very dependant maturity wise. Basically she couldn’t be in independent employment, she just wouldn’t do the work unless supervised. But being with all special needs kids seems to throw her into depression and she just functions without any enjoyment. Luckily we have a business plan in mind (more info about that later) so hopefully she can work with us. We’re accessing the NDIS this year, it’s actually not as complicated as it seems though we haven’t gone through anything yet! It’s seems pretty straight forward, a bit like aide funding, tell the worst case scenario, say we need all the help we can get and see how we go! Once again we have to go through the depressing thing of making our kids out to be total basket cases, disability isn’t kind to parents at all. Our natural instinct is to talk our kids up, all our kids. In this instance we have to talk them down. It’s shit but it’s the game.

There’s been a lot over facebook lately about that silly twit (twat) Pauline Hansen and her views of removing all autistic kids from the classroom to give the bright kids a chance to shine. What a load of crap! Let’s go back 50 years shall we? Perhaps we could put them back in mental institutions so that they don’t infect any part of the precious kids lives who find ‘those children’ so offensive. It’s almost laughable that it’s actually been said out loud. The scary thing though is that it reminds me of when Donald Trump got elected. He revved up all the racist, sexist, bigoted people and they voted him in! While those of us with compassion and brains can see what she said and say how ridiculous, there will be many more who will be saying ‘Yeah, good on her, we’ve been saying that for ages!’ I know because I’ve met one of them! While as a parent of a child with autism, a bright child without, and a sort of in between child with high anxiety, I can usually see both sides of a story. We had lots of kids with special needs at our primary school. Some were disruptive, absolutely. The problem wasn’t with the kids, or the teachers. The problem was with the lack of funding for said kids. To keep these kids (some of them runners) in the classroom the teacher often had to spend extra time with them, otherwise they would run out and that would be a dilemma, leaving other kids in the classroom alone or going after the wayward child. The answer isn’t to remove the child though but to give more resources to the schools to keep all happy. The positives of the children being in the classroom by far outweighs the negatives in my opinion. My kids were tolerant of Beth so were pretty good with other kids anyway. Others hadn’t had much to do with kids with special needs and often they developed friendships that they never would have had the opportunity to do before. Most kids in classrooms with special needs children develop compassion and understanding that their parents never had the chance to learn though having these kids share their classroom space. I’ve always been very open when parents have asked me about Beth and I loved it when she surprised the other kids with her cleverness and quirkiness.  As a friend said on facebook, the real problem is that Pauline Hansen is actually suggesting taking away any choice. We as parents have the right to choose what sort of education our child needs. Whether it be special school or mainstream school, why shouldn’t we be able to choose, just like any other parents? It’s limiting enough as it is with strict criteria for aide funding. Luckily most parents that I’ve encountered don’t think like that silly woman. Luckily most kids I know are kind and accepting.  Gone are the segregated ‘blue bus’ days when the weird kids were jeered at by the ‘normal kids’. For the most part. As my niece told me when I was worried about high school for Beth, ‘It’s not cool to pick on the special needs kids anymore.’ Thank Goodness!

 
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She’s 18!

Posted by Sarah on Mar 30, 2017 in Uncategorized

I can’t believe it, my big girl is 18! She had her birthday yesterday and her party on Saturday. She’s enjoying being 18 and makes sure that we know by saying ‘I can do what I want now that I’m an adult’ when told not to do something!

I had a bit of a mind dilemma thinking about the blog last week. Being a bit OCD (unfortunately not with cleaning the house) I feel like things must be ‘right’ and can’t cope that well when they are not. As you know my blog is called Autistic Children and the issue that I have is that Beth is no longer a child. Do I keep writing on here because I have gathered a band of loyal readers. Or do I start a new blog with a current address, sharing the name with you all so that you can jump page. I think I’ll probably keep it because it did start with Beth when she was much younger. And she is still my child. Maybe once she’s grown up at say, 30, I can revisit my issues with it!

I’ve made a big decision about Beth’s 21st too. I know it’s still 3 years away! Bill will be turning 18 2 months before Beth turns 21 so I want him to have his own individual celebration. So I’m thinking Disneyland! It’s the perfect place for her, and the perfect amount of time to save and plan for it. Of course we’d all go. And it’d probably be Euro Disney rather than America because then we can visit with family in the UK. But, how exciting!

Anyway, I’ve been really happy with Beth’s reaction to turning 18. She’s always been worried about the whole idea of growing up. When she was younger I realised that she was worried when she turned 13 that I might die like my mum did when I was 13. We got through that by me figuring out that it was worrying her. I talked to her, telling her that if Nanny was alive today that she probably would have lived, because there is so much more advancement in cancer treatments these days than back then in ‘the old days.’ Beth talks about my mum often. She said the other day that she wished that Grandsha could have been at her party, and Nanny, and I told her that they would be watching and wishing the same thing. I also wonder if her whole thing about not growing up (remember wanting to be a PowerPuff girl because they didn’t grow up and get their periods?) is because she thinks it means getting a job, moving out of home, having sex, drinking, all of the scary unknown things. I think that talking with her about us working together somehow has helped a lot. It’s not just about leaving school and the unknown now, it’s about the plans that we have. Her going to Your DNA next year 3 days a week. Her working with me at the gym once we open it. Her going to the gym now and realising that she’s enjoying it and will enjoy our own. I think she’s relieved that she’s turned 18 and nothing bad happened. Just like when she got her period and, yucky as it was, it wasn’t as bad as she’d built it up in her mind.

Anyway, Beth had a great party. She was good as usually she takes herself off to her room when we have people over, even at a party. She’ll come out and say hello, she’ll even eat with us, but then off she goes back to where she can do what she wants to do. She spent most of Saturday afternoon on the couch opening presents! Lots and lots of people came, family, friends who are like family, friends from school (primary and now), even her trainer and her art teacher from school were here. It was so lovely. And it was all about her. They sat with her and helped her open her presents and she loved it! We got a lovely cake (Maxi Foods is fabulous, and very inexpensive). We ran out of many things thanks to me leaving some of the shopping to hubby, but luckily we have shops literally across the road from us. She got lots of goodies, workout gear and equipment, Disney books and dvds, jewellery, lots and lots of lovely presents. She also got some gift vouchers and money so next week (school holidays) we shall go to gold class to watch the new Smurfs movie then do a spot of shopping together. Here are a few photos of her big day. Beth dressed as Minnie Mouse. There were some great outfits! I chose to wear a dress with the white rabbit on it rather than do a dress up, a cop out I know but at least I’ll wear it again!

 
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Gym junkie

Posted by Sarah on Mar 16, 2017 in Uncategorized

I just wanted to come on here and have a huge brag about my wonderful girl! She’s doing amazingly well at the gym! We are now going twice a week; once on the weekend and once for her personal training on Thursday mornings. I can never be fagged going at the weekends because it’s always after I get home from work and I’m usually stuffed. I did in fact put it off last weekend but as Monday was a public holiday I told Beth we’d go after I got home. Well…. I was so tired but I said ‘Do you really want to go to the gym today?’ and as the answer was an excited “Yes please!” I just couldn’t say no! As always I am glad that I’ve gone as it gives me so much more energy. We ran into her trainer Mel when we went, I think she was pleasantly surprised to see Beth there.

We just got back from a Thursday session and Beth asked me to join in. I’ve done that once before, with boxing, but I’ve not done it for a while. Mel has said to me that Beth is doing so well that she’s doing normal exercising with her now instead of the easier and more fun things that they started with. Well I was blown away this morning. After our usual 5 minutes on the rower we went downstairs to use the equipment. I did a 12 week challenge last year which really got me out of my comfort zone as I’m used to using the weights in the ladies section of the gym. The ones downstairs in the big gym are much more hard core. Beth did the leg press while I did leg curls, then when she was doing floor work I had a go at the leg press. Then I joined in on the floor to do some of those exercises. We then went to the free weight section where Beth did some on her back and some kneeling on the weights bench, and some on the big balance ball. Not once did she grizzle! I did most of the same ones with a heavier weight and it wasn’t dissimilar to some of the exercises I did in my 12 week challenge. Mel said that Beth has never given her any problems, she needs a break now and then and a drink but does it all. O M G !!!! I think she’s like me. I hated PE but once I started at the gym I loved doing the weights so I know what I like in exercise now. I’m so excited!

Here’s a photo I took a few weeks ago at one of our mum and daughter sessions. I bloody love this girl! xxx

 
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Everything going swimmingly

Posted by Sarah on Mar 9, 2017 in Uncategorized

I can’t believe we’re in March already. It feels though I’ve just taken down the Christmas tree, and I take it down a couple of days after Christmas! March means that it’s our Bethie’s birthday. And she’s turning 18 this year! OMG, yes that’s right, 18!

She’s really happy this year. She’s at Emerson Mondays and Tuesdays and seems to really like her teacher. I also think she’s enjoying it because it’s not as hands on as cooking was. She really enjoys reading and loves to absorb knowledge so quite likes the sitting down and learning side of school. She can also take a book with her to PE rather than participate so that’s a good solution for her rather than hiding in the broom closet like she did the first year there!

Wednesdays Beth goes to Your DNA, a media studies school for special needs adults. Next year she’ll more than likely go there 3 days a week, unless I can find something more local which would mean we may get transport from home rather than having to drive her into the zone to catch a bus. I seem to find places that aren’t really in our area but I guess that’s the job of a parent isn’t it, it’s not what’s easiest for us, it’s what’s best for our child. Beth is doing a creative writing course there every Wednesday. I was going to enrol her in a different class each term to give her a taste of other things but she really enjoys the writing aspect of it. Here’s a link to their blog so you can read her poem. It’s written about a TV show which doesn’t surprise me. I think it’s called an acrostic poem? She has excellent use of language, reading a dictionary at lunchtime for the last 6 years has really paid off! The words are descriptive of the bigger word, or in this case of the name of the person. I love how direct she is, no pussy footing around sensitive subjects, one man she used the H to say homosexual because well, that’s what he is. Another she says is Yummy. I asked if she fancied him and she said she fancies all of them! I also love that she used my favourite word Fart!

On Thursdays Beth goes to the gym with me for personal training. This has been my most exciting development. She loves it and her trainer is amazing with her. Her name is Melissa and she told me this morning that Beth has really improved and that today she was really attentive and did everything that was asked. Probably because I told her that there would be no treats if she didn’t as she’s fluffed around a bit the last 2 weeks. Melissa said that they had started out doing fun game type things but she’s now got her doing weights and working on her biceps. Our lovely osteo Steph also write a letter to Melissa saying how happy she is with Beth’s strength now and explaining that Beth needs to do work to make her knees go out instead of turning in. Straight away Melissa got Beth doing squats to work on that. The next day Beth said she couldn’t walk and was walking around like a robot! I’m so very happy with this development and so very proud of her. We’re even going together on a Sunday and doing a routine together. It’s making me want to open up our own gym even more now!

Fridays we alternate between art class and piano lessons. We’ve been doing art for a while now, Beth participates for an hour of the 2 hour session. She started piano just a fortnight ago and I nicked off so that the teacher Tina could do what she had to do. I could hear her fumbling for a little while, then I could hear the song Ode to Joy,  played hesitantly at first then really quite well. We have our next lesson tomorrow. We got Dad’s piano after he died and as I’ve always wanted to learn it’s a great opportunity. Thank goodness I’m working now, this is all costing a fortune, but well worth it.

So, I’m busy getting organised for madam’s party. She hasn’t had a really big party for a while so we’re having the works. An adult sized jumping castle and a popcorn machine. It’s Disney themed and we’re having a mad hatter’s tea party. And face painting. I think I’m probably more excited than Beth!

Hope you and yours are all going well. I think I’ll do a post next on how far Beth has come in all these years. I don’t know about you but sometimes it’s nice when we’re feeling bad to look back and see how well our kids are actually doing. Also for any of you that have just got your diagnosis. It does get better, it really does. And they do grow up – eventually. I know that Beth may be 30 before she is truly an adult, maybe even older. She just seems more attentive somehow now. Even little things such as when unpacking the dishwasher, saying excuse me to me because I was in front of the drawer she needed. Rather than just pushing past me, not really seeing me. It’s the little things isn’t it?  Ciao for now! xx

 
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3rd session at gym

Posted by Sarah on Dec 1, 2016 in Uncategorized

Well Beth and I just got back from the gym. I never thought I’d see those words written, let alone come out of my mouth! Here’s a photo of her with her absolutely gorgeous trainer Melissa.

bethandmel

She’s such a nice person. So far personal training is going really well. There was 3 trial sessions at a special price and today was the last one. We had also been doing tennis lessons with the whole family on alternate weeks but Beth wasn’t really enjoying them and sitting out after 15 minutes. I spoke with the gym last week when we went and asked about having the training every week instead. So now she’s actually a member! Tomorrow we’re going and Melissa will do Beth’s assessment for her and show her how to use the equipment. That means that once a week Beth will have personal training, and once a week she’ll go with me and we’ll do a workout together.

I was pleased when she finished today as she had gone on to the rower. I really enjoy the rowing machine myself and she enjoyed it lots too. So that’s something we can do together. Here we are after getting home. Bridie’s home sick so I got her to take the photo. As you can see she got a bit of herself in. And Maggie too!

bethandiatgym

I spoke to Beth’s school yesterday as they have a short baristas course that I’d like her to do. That way, if we do end up buying a gym, or a different sort of business, Beth could make coffees for people. The person coordinating it said he wasn’t sure she’d cope (I asked him what he thought to give him an opening), but it would be good to give it a try. So I feel like we’re getting some sort of plan together for the future. Hopefully!

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