Autistic Children Blog

so…. I’ve made the big decision to stop writing my blog. While I love writing it there’s not as much to write about any more and the momentum sort of went when it dropped out for a while. I am also working a lot so don’t have the time that I once did to do updates.

I am also conscious that, as Beth is no longer a child, it’s not about autistic children any more and, as she’s not keen on writing any posts or even sharing much about her life with others I am not really in a position where I should be writing about what is going on in her life. If she doesn’t want to put it out there, I shouldn’t either.

I’d like to thank those who have stayed with me throughout the journey. I have absolutely loved writing it and it has been going for many years. My dad was keen on putting some of it into a book so hopefully there may be some way of saving the writings so that when they go off the air I can still have a record of them if I choose to do this down the track.

See you later alligator! xx

Sorry it’s been so long since I wrote! We had an issue with the computer which meant that I couldn’t access the internet and I’ve been so busy with life that I hadn’t had a chance to get it fixed up. My husband thinks I should just use my laptop but old habits die hard and I prefer to do it this way!

Things with Beth are slowly progressing, hopefully in the right direction! I feel like we are getting some plans in place. She has been going to her equine therapy which she really enjoys. She loves the horses of course and Michelle, the therapist, is so lovely and gentle and calm. Absolutely nothing like me!

I was worried that it might be a bit too ‘fluffy’ for want of a better word, as in that I wonder if she needs more hard core therapy to break these rules she has in her own head, her obsessions and her queen mentality of expecting everybody to do exactly as she wants. I have seen some subtle differences though. Last week she was eating her breakfast and I heard Paul coughing and I thought ‘here we go!’ She didn’t react so I made a point of saying how proud I am of her for not saying anything and she said ‘it’s always worse in the mornings’ which I have been saying for years! Mind you, she’s nagged him about it in the mornings since but if we can at least have that one time that she’s been a bit more understanding then it can repeat. I think recognising it and acknowledging it to her helps too, after all everybody likes to be told they’re doing a good job. And she’s very much about pleasing me.

Having said that, we have had a couple of doozies! Massive meltdowns that are extreme and that have me wanting to run away from home. Insisting that she has things planned with me is a running theme and drives me crazy.

In that vein though, we have (through Michelle, the equine therapist) been put on to a lovely lady called Rachel who is a social worker, who has made me see things in a different light. I’ll be working with her for a while I think. She is amazing and has insights that are so helpful. For example, she said that Beth’s perpetual need to control things is because of how unpredictable life is. Where I would try to punish by taking away Beth’s phone (horrible for all involved so hasn’t happened for a while) it was pointed out to me that her phone, tablet and tv being on is what she can control. She sits in her room with all on at once (my thoughts are also that maybe ADHD is present). Rachel said that Beth can only control a certain amount of things and she feels safe when she can control a situation. It made me realise that it is actually not a good thing to take away her safe item, much as it annoys me that she is on it so much. It also took me back to talks I have been to. Discussing things such as how so many people with autism work as accountants or engineers or other careers that are more about numbers than people. This is because numbers don’t make mistakes. They are not unpredictable. People are. So to be in an environment with words or numbers or games that you know what to do and it won’t be changed due to others choices or behaviours is safe.

Of course I know that compromise is also something that Beth needs to be able to do but a balance of both is also important. Lessening her anxieties which are so high will mean that she can cope with things when they’re not all her way. And giving her coping strategies when they don’t go her way. Rachel also suggested Beth see an occupational therapist to help with regulating her emotions. We are going to discuss maybe getting an ADHD assessment done. More for the fact that the medication she is on will not work effectively if she does in fact have ADHD and the medication for that is what she actually needs. She is on anti depressants but seems miserable much of the time. Which of course is heart breaking as a parent to see.

So I feel that we have some sort of plan in action finally. It’s exciting to know that there will hopefully be some improvement soon, and some enjoyment for life again for my girl!

Beth and I are going to see an equine therapist this afternoon. I had spoken with Beth about this a while back, then on the weekend when we were talking about her seeing a specialist to help with her obsession with Paul she asked about it. I had forgotten all about her to be honest! I spoke with Michelle (the therapist) on Monday and she sounded lovely. To start with I was worried that it might be a bit fluffy for our needs, as in not hard core enough because the behaviour is really out of control. But the more I spoke with her the more I thought that we could get something out of it.

One of the things we discussed was redirecting Beth’s obsession to a more positive thing. I’m not really sure what that could be mind you, obsessions themselves scare me. I remember when she was in Primary School she loved playing in the sandbox. She does have a bit of a thing with salt and she sometimes eats sand. I think it’s called pica? I didn’t realise she was doing it until I couldn’t flush one of her poos and saw that all the poo was washed away and it was sand in the bottom of the loo! Anyway, sorry, that’s another story. I was chatting with a friend who had a boy on the spectrum and she said that when her son was in early intervention they had a child obsessed with digging in the sand. They said they tried to redirect and his new obsession became anal exploration! His own of course! So sand doesn’t seem so bad after all in hindsight.

We also discussed learning about our bodies and how we feel when we do certain things. Michelle said for example that a horse might get startled and do that things with their lips while breathing out. Then the one next to them will often do the same thing in support. She would explain things through the animals doing this so as it’s not all directed at what Beth could do, so she thinks about how others calm themselves. I must say, I was really impressed with her knowledge of not only how the mind works, but how the body responds. As she can be paid with Beth’s NDIS funding I think it’s definitely worth a try.

Beth’s birthday was on Good Friday so we had a lovely long weekend. We went to the beach on Friday for a walk and a play in the water, it was beautiful weather. And we had lunch with Grandpa next door. Beth had a revolting meltdown there so her and I came home. The beach seemed to calm her down though. On Saturday Bill and his friend Jimmy took Beth to see Kung Fu Panda 4 and to the pancake parlour. I went and had a nice head and face massage! Then on Sunday I took Beth to have one too, and she loved it! Monday Paul took Beth to the zoo which was nice. Again, she wasn’t as bad when out. Apparently they’re moving heaps of animals to Werribee Zoo, they have a massive area as big as the whole zoo for the elephants which is exciting! I am wondering whether they will make the zoo itself a larger aquarium perhaps?

Yesterday was Autism Awareness Day. For years I’ve heard this after the event and it’s annoyed me that it was never even celebrated at her special needs high school, let alone any other organisations or carers groups. I messaged our managers and the people that run the social media group through my work and asked if we could wear blue as a tribute to those on the spectrum. They were very receptive and said they will add it to our calendar from now on, to go with Harmony Day and International Women’s Day amongst other important days. I was so touched, and even more so when I turned up and work and, one by one, my coworkers turned up wearing something blue. Not wanting to go too big I wore blue earrings, there were necklaces, headbands, scarves and hats. I nearly cried when I saw everybody, it means so much to me to have such a supportive team who are there for me on a day they know is incredibly special to me.

Wish us luck this afternoon! xx

I can’t believe that my big girl is turning 25! It’s her birthday on Friday. Trying to figure out things to get her. As usual there’s a few Disney things, some books, and she wanted a milkshake maker. We got her a nintendo switch for Christmas, I hoped it would give us an avenue for getting her games for presents but she’s barely touched it! She loves those ‘for dummies’ books. I got her one for Christmas that she asked for which was raising chickens for dummies. For her birthday she asked for raising goats. Neither of which we are going to do mind you! Though we did when she was little.

On my mind constantly at the moment is where she will live as we get older. If money wasn’t an issue it would be lovely to set up a farm style place which had retired / rejected animals, a retirement farm. Beth would love it. I would love it but I’ll be 60 in 2 years (Paul is already there) and it’s such an impractical thing for us. We really want to retire near the beach, near our friends and where Paul grew up. We could maybe move into a retirement village (over 50s) that had the facilities to look after us when we get older, therefore having the facilities to continue looking after Beth. But, I’ll be honest, I’m not sure I want her living with us forever.

I feel like such a bitch when I say this but it’s true. She’s really hard work and I’m getting tired. While I see all the improvements in my friends kids as they reach adulthood I really don’t see that happening. I know it’s not about comparisons. I’d just be happy to see Beth happy to be honest. She’s not a particularly happy person. She has this hang up about Paul and his coughing (and other noises). She thinks she is the boss. And she’s really hard to be around. The hard thing is though, she has such obsessions about things, it’s not like if she’s not living with us then it’ll stop, she’ll just fixate on something or somebody else. She had a huge meltdown on Sunday and it’s so draining.

I’ve booked her in with the farm stay that she enjoys, in the second week of my 2 week break. I was speaking to my friend Dom about it, about how I’ve strategically done it and I feel a combination of guilt and pure joy that I will have a break when I am at home. She said mum guilt is one of the hardest things!

She’s sick again this week which seems to happen near her birthday each year. So not even sure she’ll get to work tomorrow! She did manage to go out with one of our favourite carers – Tara, here’s a photo of the 2 together. Also one of Beth having a cuddle with a lizard at work. And one of Miss Coco, we went to visit Dom who has Coco’s mother visiting and due to have pups today! Coco’s sister was there too so they had a lovely play, as you can see by her wide maniacal smile!

I’ll leave you with a Beth funny (though it wasn’t funny at the time). On Sunday when having her meltdown, Bill and I were asking her to be quiet as we were trying to watch a movie. Beth said in her high pitched (when she’s being especially painful) voice ‘It’s my birthday week though, you have to treat me like a queen!’ Not sure who she got that from (hint, that would be me!)

I’ve just got off the phone to our plan managers enquiring about whether we can claim hypnotherapy for Beth. I had spoken to a lovely lady who does this, locally too, and has worked with people on the autism spectrum with varying degrees of success. We spoke about how Beth is so obsessed with Paul and his coughing and how it is disrupting our lives so much. She’s also not nice to Bridie for much of the time and it becomes who she is and what she does. The hypnotherapist was really lovely to speak to and said that it would be worthwhile having a session to see how it worked and if she was receptive to this. However, as she pointed out, when I did hypnotherapy to stop smoking, I really wanted to give up smoking. If Beth is being half hearted then it won’t work. She wants to need to change. We spoke about having two train tracks to choose from and how we at home can reiterate what is said in sessions such as ‘you used to choose that train track but we’re trying this one now’. I really like the idea but she is $250 per session. Which I don’t mind if I know it will work but I really don’t! The NDIS won’t fund unless she’s an accredited counsellor. I might look at other professionals who do hypnotherapy also. I know when I did it years ago, I went to a local doctor so I could claim it on medicare.

The plan manager gave me the name of a website called Kinora which is run by the NDIS and gives lists of service people who can help as well as having a forum so I’ll check that out.

We’ve had a quiet few weeks as Beth has been quite sick with a chest infection.  I’ve bitten the bullet and bought some vaporisers to see how they will go as we often get bad coughs and asthma. If they work I will get a proper one but they’re so expensive! Beth has been back out with Bridgehaven for her first day out in a while and seemed to really enjoy it! She went to the botanical gardens and the pier last Friday. They pick her up and drop her off which is very handy! She is also going out with the interchange girls once or twice a fortnight so we’re finally filling up her days.

I’ll leave you with a Beth funny. We were watching Gogglebox on Thursday and there was a show about gay men in Arabia. Beth often says things that we have to almost guess where it’s come from. So we’re watching away and Beth says ‘they’re gay, just like Arnold!’ OK, what???? ‘Arnold the pig. You know, from Green Acres?!’ Apparently I was supposed to know that she was talking about a show that was on around the time I was born. And that the pig was gay. Not sure where she got that from! x

So I have been doing grateful posts on and off on social media for a while. I think it’s easy to get bogged down with what is not great in our lives and don’t really appreciate the good. Some days it has been hard to feel grateful but there’s always been something, a sunny sky, the trains running on time, working with good friends. Today I am grateful for the friends I have made during my whole journey with Beth.

When Beth was really little I ran an autism support group. It was called HAGS in the hills which stands for Happy Autism Group Support. This is due to us all having been to depressing groups, we wanted it fairly lighthearted while still dealing with the issues as parents do when raising a young child, let alone a child with additional needs. I had Beth who had just started school, Bill as a kinder kid and Bridie as a toddler. I was tired and grumpy (still am at times to be honest!) and wanted some me time, so some friends and I started up our group. We still see each other a couple of times a year. I wanted it because when Beth was diagnosed, there wasn’t a whole lot of support out there. We became really close knit because we ‘got’ each other and could say what we had to without judgement.

One of these lovely ladies I’ll call Clemmy. Not her real name but a nickname that actually started of as Noodle, then Noods, and in it’s formal term – Clementine Noodle!  I don’t want to name her as I haven’t asked if I can. I noticed her daughter had started at a new service so asked about it and it turns out it’s nice and local to us. Beth and I went to see it today and safe to say loved it! It’s only been around for a few months so there is room for her to start – this Friday. They do various day programs and Fridays they go to different places each week so I thought it would be a great day to start. They’re going to the beach this week. She thought the place was great because they have 2 cats, a lizard and 9 guinea pigs. There weren’t many other participants there this morning, they were heading out to a disco so I’m not sure how she’ll go once she gets to know them all. As my regular readers know, Beth isn’t too keen on other people with a disability. They’re often too loud (pot, meet kettle) or want to do things that she doesn’t want to (how very dare they) but the reality is that most programs that she will be in will involve others with some sort of a disability. They’re planning all sorts of other things eventually so I suggested a few such as art or exercise (all things of course I’d like Beth to get back in to!) They’re big on healthy eating and exercise. And no phones! I love this idea. She said ok too but I’m sure there will be a bit of resistance. And when I say a bit, I mean a lot!

So… I’m very grateful for my little hags network that I still see on occasion but share information that helps us all. And really, that’s what we need in any community, support, friendship and sometimes a common denominator to get us through. Thanks Clementine Noodle, love Roberta Williams!

xx

Oh my goodness, sorry I just realised how long it’s been since I’ve written! Time got away from me and all of a sudden it’s February. So Merry Christmas and Happy New Year!

We’ve been plodding along as usual. Beth had a weekend away with Bridie and Amahle to Phillip Island which was amazing. For me especially! They went to see the Fairy Penguins and the chocolate factory and the wildlife park. They ate fish and chips and really, what more could she want. I slothed around and ate when I wanted and watched lots of Netflix and thought that I really should be getting stuff done but that I couldn’t be bothered.

Last week we had a power blackout for 2 days. Oh My God! It was absolute hell. Unfortunately the middle day was my day off so I couldn’t even get away. The most annoying thing is that there was no range for the phones either so we couldn’t even get on the internet. It happened on the Tuesday and between 3 and 5 Beth had a massive tantrum. Complete with her version of me. Me, by the end not being very nice to her, wasn’t the me she wanted to hear so she spoke on my behalf. With her hand talking like a sock puppet without the puppet. With a really deep voice! So she would be having a meltdown and the real me by that time was saying ‘for fucks sakes Beth, you’re 24 and you’re acting like a 2 year old, I can’t do anything about what’s happening and I hate it too so you’ll just have to deal’. Not my proudest moment but better than me going to stay in a motel by myself which is what I really wanted to do. Beth’s version however was to answer herself as me. ‘hello darling, I’m sorry that you have to go through this, we can go out and find somewhere that has power and internet and we’ll be fine. Now come and give me a big hug. I’m sorry I got angry at you!’ With me saying “I don’t speak like that (think Johnny Depp imitating the father in Charlie and the Chocolate Factory) and I’m not sorry and I don’t want a hug!’ Starting when we were meant to watch Bold, then when the Middle was meant to come on, it went on and on.

Day 2 we went to Knox and charged our phones in the car a little bit. Not too bad during the day, we could read and I quite enjoyed doing this but of course Beth didn’t enjoy it at all. Then that night it started all over again. Pizza calmed her down a little then Paul said he’d take her out for a drive to charge the phones. I kept getting texts from her with things such as “we’re going to the Angliss Hospital because they have power and wifi. With me saying no, when I stayed there the wifi was crap so they don’t, plus it’s for sick people which you’re not. With a cheery reply of ‘see you at the Angliss then’ with a smiley face! Then when she came home and complained that we still had no power she tried to tell me that instead of my ‘I can’t do anything about it’ reply, that I’d actually said ‘Beth be optimistic and it’ll come back on tonight!’ Finally it came back on the next morning, just in time for us to both go back to work!

I’ll leave you with a Beth funny. She was telling us what she did at work that day and Paul asked if the really mean emu was still at her work. She replied with ‘you mean Rogue One?’ And yes, it was Rogue One. She said ‘no he died. He’s in hell now!’ Well ok then!

Sorry folks, it’s been a busy few weeks for me so I haven’t had a chance to write much on here. I’ve been working full time for a few weeks and will continue to do so up until Christmas, so never home.

I did have a couple of weeks off last month. I went to Queensland with 2 of my besties so that was wonderful! Then I had a week at home. We had poor Maggie (the cavoodle) get sick that week though which was awful, we weren’t sure if she would make it. That was a really stressful time and she’s just come out of an operation to have her spleen out so it’s been a costly few weeks but we’re on the flip side of things now.

Beth has been enjoying her time. Ellie ended up leaving as Beth’s friend who takes her out on Tuesdays. We had a meet and greet with 2 more girls during the holidays and they both seemed lovely. One has taken her out already, the other one has now realised that she can’t do Tuesdays with Uni so we’re having another meet and greet this week! I’m thinking it’s time to take control again. I did advertise a while back on Mabel but the people that answered me just weren’t suitable. It’s annoying because I am very specific about what I want for a carer and say so in words but still get people answering who are wrong for the position. For example I have said that I want somebody in their 20s that is fun and that Beth can consider her friend as they go out. I have specifically even used the words I don’t want somebody young at heart but actually young and I get a zillion people saying they are however old but young at heart! It was just too hard and we finally got taken off the waiting list for the agency we are using who are lovely but don’t seem to have a lot of people, and have even suggested ones who are older. I don’t want her to be going out with a mother figure.

The other benefit of finding somebody ourselves is that we can cut out the middle man. This means that we are paying less through our plan and they are getting paid more because it’s not through an agency. Anyway, will see how this week’s meet and greet goes.

Beth has decided on her main Christmas present of a Nintendo Switch and Bridie has found heaps of games that she thinks Beth will like. It’s hard to find things for Beth as she’s at an adults level in lots of things and a childs level in lots of others. So that sounds like a good solution as she loves games.

We had brunch with Beth’s old personal trainer this morning. It was so lovely to see Mel again, it’s been bloody ages! The problem was though that Beth stuffed her face so much that she made herself sick. And did a massive vomit! Luckily we were in the beer garden. I hurried her out to the back carpark and tried to get her to the bin but she didn’t quite make it. Better than throughout the beer garden though! I had to laugh, it was quite a drama! I guess it’s what to expect when she’s had weetbix and juice at home, then a bowl of chips and a hot chocolate. Plus, I didn’t realise that because she had started to feel sick she drank nearly a whole jug of water!

Anyway…. Have a wonderful week everybody! xx

It’s been a bit of a mixed week again. Beth has been enjoying going out with Ellie which has been lovely. Last week they went to the Museum and saw an exhibition called Fantastic Beasts which looked great. I organised it all including the train times there and checked that the companion card would be able to be used and it all went smoothly.

Beth is now realising that she can choose where she goes and is actively looking at what activities she can do which I love. It’s important that she has a say in what she does and I don’t want to have to think things up just for the sake of doing something. This week she was thinking of Scienceworks but as they only have 4 hours it is a bit far. Even with driving it takes a long time and some city driving would be required which is something even I wouldn’t want to do!

Beth opted for roller skating instead. This is something I have done with her in the past. Not something I particularly enjoyed as I was either a) pulled over, b) nearly had my shoulder pulled out of joint or c) walking instead of wearing skates so I could keep my balance! I have looked in to Beth doing lessons but they’re not available on the Tuesdays that she has Ellie come. Wednesdays are usually my day off but soon I’ll be working full time up until Christmas so not an option either. Ellie said that Beth was really good and by the end didn’t have to hold on to the side too much, just holding her hand. They also had the obligatory junkie lunch (at least Beth did) of kfc and a hot chocolate before skating. Ellie said that Beth shut the car door nice and gently this time too with some prompting!

The downside to the week was a massive tantrum on the weekend. I don’t know if it’s my intolerance that’s gotten worse or that maybe she was tired or not feeling well but I’m really just over them. It was huge and had me shaking and actually wishing that she didn’t live with us any more. We had found such a fantastic therapist, so we thought, and then she retired after the first session. So if anybody knows of a great psychologist who is experienced in obsessive behaviours in adult women with autism please let me know!

I’ll end with a Beth funny because you all know I do love her and don’t want her to live anywhere else yet and sometimes I need reminding! We are in the process of selling Paul’s car so we can get something little that Bridie can drive around in too. And hopefully to be able to fix my car! We were discussing this in front of Beth and her solution is for Paul to ride a camel to work! She’ll do anything to get another pet!

We’ve had a busy yet quiet time of late. Busy just because we’ve had work and home and stuff in between! Quiet because for a nice change there hasn’t been a lot going on.

Beth hasn’t changed much obsession wise since starting on the cannabis oil. This has really disappointed me actually as I have been thinking and talking about it for years now. She doesn’t seem to be particularly happy a lot of the time and it makes me feel so sad for her. We have talked about changing things around, and she says she doesn’t want to leave where she is working. But when she talks of her friends there it’s always the ones who run it all, never the other participants. She’s at that frustrating middle part, she doesn’t like to be with other people with disabilities but isn’t able to work unsupervised or unaided in the mainstream world, for want of a better word. So she’s stuck in the middle. I’m sure it would seem ableist to some, and maybe it is, but I think she sees it as why should she have to be with people just because the all have a disability. What have they got in common if anything? Sadly they all seem to get along famously, judging from all their photos posted on the work page. Beth isn’t in many of the photos, maybe because she’s so solitary at times.

Beth’s days out with Ellie have been nice. Last week they went to a local swimming pool then had lunch. Lots of adjustments to be made though. I checked her bank account to see how much money she had and she had spent quite a bit on food. Things that she normally doesn’t have such as an extra drink at McDonalds for afters and a muffin. On top of a cake for morning tea! Then she felt quite ill in the afternoon. I guess it’s a taste of freedom and about making wise choices! I told her this week I’d prefer she had a morning tea snack or drink and a one course lunch! They ended up at the pancake parlour and sounds like lunch was yummy! They also went to bounce/jump – one of those trampolining places. Ellie said that Beth was a bit quiet and she did play on her phone a bit. I’ve had a word to Beth as she’s at home a lot and can do that then. I want her to be present when she’s out on an outing! Next week I’ll talk to Ellie about taking her to the museum as there’s something special on I think. Happy for her to be on her phone for a bit if she’s travelling, just not all the time!