A grateful post

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

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February already!

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!

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It’s been a while!

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

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A couple of lovely outings

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!

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Cruising along

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!

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Library, giant swing and fish and chips!

Beth had a nice day out with Ellie yesterday. They went to the library, one of Beth’s favourite places to go! Then they went to the park where Beth had a go on one of those giant round swings. A bit too much it seems as she then felt sick. I should have thought, she sometimes makes herself sick by overdoing things that can make her dizzy. Then (and Ellie told me this) they sat in the car and ate fish and chips while listening to Smooth FM! The only radio station that ANYBODY is allowed to listen to when Queen Elizabeth is in the car! Ellie is great, she let me know that they’re going to work on shutting the car door appropriately as Beth tends to slam it. I admit, I do a lot for her and often will run around and open and shut the door, simply because I’m worried about her a) slamming the door into the car next to us and b) her walking out in front of the car. We do have a handicapped car pass so I’ll give it to Ellie to use when she has Beth.

I’ve also just signed Beth up for an employment service. I thought it would be nice to try and find her an assisted job one day a week. Maybe in a supermarket? I’d like to try and integrate her into mainstream society a little more. Mainly because she enjoys her time more in mainstream situations. She’s have to have somebody with her to stop her from sitting on the floor/reading the magazines for sale / eating the chocolate / watching dvds etc. Just put in any store and imagine it! I think once she learnt she would be excellent at her job but she needs the ground rules and guidance to do it efficiently. Our of all my kids, she’s the one who does her jobs really well, because I write it all out step by step first for her. She does these steps then eventually knows exactly what to do. I still write her task lists for her which she ticks off. If anybody else tries to add to this she generally won’t allow it because I didn’t write it. Or, if anybody asks her to do something not on the list she’ll say no because it’s not on there! It’s a work in progress…..

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A new friend

Beth has a new friend to take her out on Tuesdays. She’s a lovely young lady called Ellie. We met her last week at a meet and greet to see if they would be suitable for each other and they were! Yesterday was the first time that they ventured out and they went to one of Beth’s favourite places – Chesterfield Farm. We’ve been going there for many years. Beth believes that one of the camels that lives there is my cousin and tells me that each time she goes. She doesn’t seem to see the connection that it means that she’s also related to him! I think if we were younger we’d move to the country, I grew up with lots of farm animals and I know Beth would love that. We’d like to eventually retire by the beach though, near where our friends live, so we missed that boat unfortunately. We’ll have to make do with visits to family. I must admit, I do miss our goat and chooks though! Here’s some photos that Ellie took. As you can probably tell from her work photos she’s a bit of an animal whisperer. Here she is feeding the goats, my cousin, a donkey and some sort of bird – a peacock I think!

 

Here’s a couple of photos of Beth at work from the last week. She seems quite taken with the lizards and I think her smile is just gorgeous in them so wanted to show you my gorgeous girl. Maybe we could still squeeze in some lizards at home, though the cats might be too painful!

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A few rough weeks

So some very sad news. Only a few months after Beth’s Aunty Kathryn passing away we have now lost Beth’s beloved Grandma, Bev.

Bev has been a pillar of strength to our family. When we got Beth diagnosed Bev and John moved to the area to help out with her. I was pregnant with Bill at the time and I remember going to look at houses with them, so excited that they were going to be near! They had Beth for me one day a week, then Bill when Beth started school, and finally Bridie. Bev came to many appointments with me with Beth, as you know, there are lots of specialist appointments, in the early years especially. She came with me when I chose the little primary school we went to, also when we went to the special school that we chose for high school.

Eventually they bought the house that she lived in until she passed, and we built our house next door. When the kids were younger they had the trampoline and various other equipment there. We had lunch there most Sundays and loved being a big extended family. In the later years we had the honour of looking after them both, Bev had dementia but still remained at home with us. With the help of carers we were just about to start looking for alternatives and she passed. I’m so glad that she could be at home until nearly the end.

Our kids knew it was coming. Really, the Grandma that they knew so well had been gone for a few years. But it still hit hard. Beth has been having a few meltdowns and one really bad one in particular had me frustrated and teary too. Right in the middle of it she cried out “I miss Grandma!” and my heart broke again. Poor love, it hadn’t necessarily shown that she was that upset but it had come out in other ways.

We had the service last week and it was lovely. The nice thing is that they ended up being able to have the gravesite next to their daughter Kathryn. John (my father in law) was pleased. Beth, Bridie and I didn’t go to the burial and stopped in at the coffee shop to wait. I was a tad disturbed that there were loyalty cards for coffee! I assume they were for the staff! Beth loves it there because they have a giant swing so she went on that for a while.

On the weekend we were in the spa talking about Grandma. We were talking about who is in heaven and how they’d all be together. I said that I believed that there is no sickness wherever she is, that Grandma would be at her healthiest age and wouldn’t have dementia any more. I said she’d now be with Kathryn, Grancha, Nanny and Uncle Richard (my parents and brother) and her parents. Beth added in ‘and Robyn Williams and Norm McDonald!’ I said I didn’t know if they’d be hanging around with our people, but, maybe!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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A mixed emotions week

For the most part it’s been a good week this week.

I have been really pleased because Beth has been going to work religiously without complaint, something that hasn’t happens for goodness knows how long. I am thinking that the medical cannabis is working, for that side of things at least! She even complained of having a sore ear and a bit of a cold on Thursday so I suggested that she has some armaforce to combat these, she was more than happy to do this and still go to work. Normally she’d be saying that she has to stay home.

On Friday Amahle and Bridie took Beth to Rush which has trampolines and foam pits, things she loves but hasn’t been too much. Due to me not liking them at all!

Yesterday however was one of those bad meltdown days. Beth was being particularly annoying, both to Paul – telling him he needs a hobby on Sundays to get him out of the house, and to Bridie – telling her that she needed to have a spa with us. It was really horrible. I tried to get her to read for 15 minutes as I finished my coffee so we could go in the spa together. But that took about an hour because she kept insisting that she read in the lounge where Paul and Bridie were, or arguing that she could read her phone. Or that because she uses subtitles watching the tv is reading too. It got worse and worse on both our parts. In the end I sent her to settle down in the spa for a few minutes before I joined her. After a while she calmed down but not before manically trying to get me to play over/under and dipping her head (glasses and all) under the water to win. By the time we had gotten out she was calm again and all was well and I was stuffed! Bill pointed out later though that those meltdowns used to be a lot more frequent and, thinking about it, I agree. It still makes me want to run away though!

On Saturday I visited a friend after work because her daughter has a recent diagnosis for her nearly 4 year old daughter. As is always the case, the mum was feeling a tad overwhelmed and wanted somebody to chat with who has been in the same situation. It was so nice to do this, it’s been a while. I used to catch up with different mums, whether in my support group or one on one if I met them through school. I had a lot of contacts then but as Beth has grown older not so much. I offered to help set up a support group the same way I had all those years ago, contacting a community house and putting flyers in school and kindergarten newsletters. She’s a fantastic mum, her daughter was just gorgeous and had lovely manners. She liked the idea of doing that and was quite happy to then take over once we’ve established a support group. Other than that we just chatted over cuppas and it was really lovely! So many things took me back to Beth’s behaviours at that age. Lining things up, having to have locks on cupboards because of Beth’s love of the sound of plates/glasses/eggs shattering. Beth pissing off whenever she wasn’t on a halter lead! Not that her girl was doing the latter 2 things, it just brought back so many memories as we talked!

and, drumroll………I’ve decided I’m going to write a book! So, stay tuned! xx

 

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Some exciting news for a friend!

Tonight I want to share some exciting developments that a friend of mind has shared with me about her son. In fact, for those who have kids/adults on the spectrum, I’d love to share a few stories on here. I think it’s lovely to share inspiring stories for parents who read my blog with younger children. It shows that there can still be huge achievements, maybe later than others, maybe different than neurotypical kids but achievements none the less.

I received a message from my friend Tina wanting to share some excitement with me. Her son Henry had been working last year in a cafe. They were amazing with him and really patient and he absolutely loved it. But then they closed down. It was so sad because he was so happy there. She told me tonight though that they have opened another cafe and asked her boy to come back and work there for them! Plus, he’s got his L plates!

I’m so bloody excited for them! She says that he is going to Uni too to do an animation design course. He’s not doing it as a degree as it would be too overwhelming for him. He will do one subject a a time and do it his way. Similarly with his L plates. He’s happy at the moment getting in the car and making himself familiar with things. He’s started it and he’s learning where everything is and they’re all happy with that. I am so happy for them.

We have talked quite a bit about our kids and how in awe we are of them. Where getting his L’s is a huge thing for Henry, Beth visiting me at work eventually with Coco will be the big goal for us. It doesn’t matter what the goal is, moving forward is the big thing. And them being happy. That’s the most important thing, always.

I love that this journey has me connecting with people on such a personal level. I absolutely adore my friends who ‘get it’ and who share what some might think are small achievements but what we know are absolutely huge.

I’d love to chat with more of you and share more of your stories. Please contact me if you have some to share! I know that there will be many who would really benefit seeing how other parents handle situations that they may be going through right now. It can seem that there’s no light at the end of the tunnel, especially at the start, it’s a bloody hard time!

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