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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Mary Poppins!

Yes you may have guessed it, I took Beth to see Mary Poppins yesterday! She has been asking me if we could go and I realised that it was finishing in 2 weeks so if we wanted to I’d better organise it. I wasn’t going to because we saw it a few years ago, plus it’s pricey. I don’t have to pay for myself due to her companion card though so I thought stuff it! I’m so glad that we did because it was sensational!

I organised the tickets last week as a surprise. I had to do it over the phone because of the companion card and was most excited when they had 2 in the 8th row become available. I told Beth I had a surprise and told her what it was and her response was decidedly lacklustre. “Oh Mary Poppins’ in a monotone voice. When I said I thought she’d be more excited she said ‘yay’, also in monotone! Oh well, I’ll take what I can get!

We set off for the city just after 10.30 by train. We got there about an hour before so had a quick bite at the Elephant and Wheelbarrow then wandered down to the theatre. I had a bit of a panic because I realised (thank goodness) that my Tiketek account was in my very old email address. I realised this in rising panic after trying 4 different email addresses! Then had to find them on the phone. Disaster averted. The woman next to me commented (unfortunately as I’d forgotten my hearing aides and she was on my deaf side) that the seats seemed smaller since the last time she was there. I didn’t know her, otherwise I would have said yes but my arse has gotten bigger!

The show was fantastic of course. Last time we went Matt Lee was Bert, this time it was Jack Chambers. Both excellent. We were mesmerised. I absolutely loved looking at Bethie’s face during certain parts as she was in awe of the dancing on the ceiling, all the bright colours and Mary flying overhead.  Just like last time, Beth waved at her as she flew directly above us. I hope she never loses that childish glee. I haven’t so I don’t think she will! The best bit was hearing the song that many don’t realise was actually written about me – Practically Perfect in every way!

 

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Try again

Sorry to my regular readers, there was a problem with sending emails yet again! I guess it’s a problem I’ll have from time to time, my blog is a few years old now and has a few issues. I had a lovely lady fix it for me this time so I’m hoping that it won’t happen again!

We’ve had a few good weeks with Beth. While behaviourally she is still carrying on a little regarding Paul and his noises, she’s calmed down somewhat. What would often turn into a meltdown can be, on occasion, stopped before the tantrum hits it’s peak. I find if I am positive instead of negative about it all it works better. So if she starts trying to tell him it’s time to go to bed or that she’ll run him a bath, I’ll call her in and say ‘don’t spoil it, you’ve been so good lately’ and she can calm down. Sometimes! I will say things such as how yes, the noises can be really annoying and I’m so pleased with how she’s ignoring it even though it’s hard for her. At times she’ll still carry on, at times she’ll take a deep – being brave – breath and say ‘I know I’ve been really good, I’ll really try.’ Sometimes it works, sometimes he just really pisses her off!

One of the big differences I have noticed is her willingness to go to work. Before she was always saying she didn’t feel well. Like when she didn’t want to go to school, the coughing or the moaning would start days before she was due to go back, in preparation for the big performance on the day! Now we’ll talk about what she’s going to do the next day and she’s fine! So, I think maybe the medical cannabis is working? She’s on a fairly low dose I believe so will go back to the doctors in the next few weeks. I think slow and steady is good right now.

We’ve booked in for Beth to have another weekend with Wattle Tree in September. Let’s hope I don’t get covid for the whole weekend again like I did when she went to Bali! We’ve also got Interchange coming out to meet her, they have opened up their books again for one on one support so I’m excited that she’ll be doing more soon. I’m also thinking of taking her to see Mary Poppins again! It’s finishing next month and she’s been asking to go but I had said no. Now I think it’ll be nice to do it before it finishes, especially as she’s asked. I’m excited, we loved it last time!

Here’s a few photos of Beth at work. She seems to have her eyes shut in most of them but hey, that’s Beth! Have a wonderful week everybody! xx 

 

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Beth is 24!!!!!

Beth turned 24 on Wednesday! It’s been a weird week. Last weekend was exhausting for all of us. On Saturday night Beth’s meltdowns were out of control. Usually she cracks it with Paul for a while, telling him the usual, go to bed, go to the doctors, have a bath. Anything to get him out of the lounge room. Last week it just didn’t stop though. Then she was up until after midnight. Paul says 4am, Beth says midnight so I’d say somewhere in between. She has the tv on really loud as well as playing music on her tablet. So he went in to tell her to go to sleep and the whole “I’m an adult, I can do what I want” came out. Usually it calms down after peaking but she woke up on Sunday in the same mood and it went on most of the day. This has never happened before. I wasn’t very nice I must admit because basically I’d had enough. In the end she talked me in to having a spa and it was the best thing for both of us. In tears to begin with we both calmed down and talked about it and felt much better afterwards.

I had a phone appointment with the doctor, panicking a bit because he has said that the cannabis oil can have the opposite effect of calming and, as we’ve had that happen before with homeopathy I was worried it had again. He said that at this stage she is on such a low dose that that wouldn’t happen but to decrease the morning and stick to the higher dose for the evening. The rest of the week has been pretty uneventful as far as tantrums are concerned so I’m hoping it’s not that because it’s something I’ve pinned my hopes on for years! If it is though so be it, we’ll deal with it another way!

I have been looking at a fabulous personal trainer who has aspergers and has devised a program that works on what issues you are having and how to help the individual. I will contact him, I do have the forms to fill in and send him but there’s been so much going on it just hasn’t happened yet.

So, Beth’s birthday was Wednesday. I had been asked to work a full week meaning that I wouldn’t be home for it for the first time in forever! I organised Bridie and Amahle to take Beth wherever she wanted to go and she chose Chesterfield Farm, an old favourite. She likes to visit the camels, she says I’m their cousin. She doesn’t seem to get she’s related to me! Unfortunately the weather was pretty revolting but I think she still had a good time. Especially as they had kfc and Maccas desserts afterwards! She had La Collina, her favourite pizza. And chocolate mousse. We will go and have lunch with Grandma and Grandpa tomorrow and she can have a cake then. We would have done on Wednesday but I dont’ get home til nearly 6 and the Middle is on at 6 so we couldn’t possibly go out after that! I got quite a lot on her birthday list. Note the green top she is wearing, she asked for something green! She also asked for m@ms and I got her a tub. She kindly offered them to us on Thursday night as we watched Gogglebox by saying ‘would you like some of my birthweek m@ms?’ I don’t know where she gets the celebrating all week from…..

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Some sad news

We’ve had a muddled up time recently for Beth and she’s all over the place mood wise. The week before last my beautiful sister in law passed away after a 20 month battle with brain cancer. She tried really hard to stay with us but in the last few months her health declined rapidly and we lost her. Kath was a lovely lady, she was my husband’s older sister. She lived down by the beach, really close, so sometimes we would go down and have fish and chips and take the dogs down to the beach. We had many Christmases there too. She always asked about the kids and was a fantastic aunty. Here’s a couple of photos of her with Beth at her first communion. Beth’s naughty cousin is doing rabbit ears in one of them!

The funeral was on Monday . We had upped the calming aspect of Beth’s medical cannabis which meant we could go back down to 3mg of the oil as it makes it a bit stronger. We were told to do 3 to 5 and as we had done 5mg over the weekend thought it would be fine. But Beth said she felt dizzy. We still persevered, she didn’t particularly want to go. I didn’t think it was the medicine as while we were there she was particularly annoying, saying her arm was sore, her tummy was sore, she had an earache and, when Bridie tried to take her outside, told her not to because she would catch the flu! She was a real pain in the arse! Not through the service though, she was perfect then. She didn’t want to go to the burial so we walked across to the cafe and had nice hot drinks which I thought would appease her. For some reason she was really restless at the wake though which is where all of her whingeing began. I had a stern word to her and told her she had to behave better and to stop giving her dad a hard time (again) as it was his sister’s funeral day. Our friend Glenn was there and looked at me in horror! Said he nearly sat down and shut up he was so scared! Didn’t make any difference though, Beth just kept on Bething!

Yesterday was a normalish day, I went back to work but went to a work dinner but Beth was at home. Then this morning after her medication she tells me she’s dizzy again. So I’m thinking I’ll go back to the lower dose in the morning and see how she goes with the nighttime dose.

Beth has been going out a little bit with Bridie’s friend Amahle which has been lovely. Last week they went to the local swimming pool then got Macdonalds for lunch on the way home. Here they are in the pool!

Next week is Beth’s 24th Birthday! I’m a bit sad as it falls on a Wednesday and usually my day off is a Wednesday but I’m working full time next week. So I’ve organised Amahle to take Beth to the zoo, and Bridie will go too. She’s pretty happy with that. We can have her favourite pizza for dinner and I’ll buy her a cake or donuts for afters. I’ve bought her a few books. She loves those for dummies books so I’ve bought her an anatomy one (she loves all that stuff) and a speaking French one, seeing as I’ve told her we’ll go to France and Paris Disneyland next year (if we have the money!) She can do the French speaking for us, she’ll know it well by then knowing her! I also asked her to send me a list of what she wanted. This is her texts, one by one!

the bloody adjustable massage bed keeps popping up in conversations. They’re about $10000 (but wait there’s more!) and she keeps asking for one! It’s nearly as bad as her obsession with a here comes Christmas Candy Cane from one My Little Pony episode from years ago! Some are doable, some are just not!

Have a lovely week everybody, speak soon! xx

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A lovely development

Beth has been on the medical cannabis for just over a week. The doctor said it can take a month to see any effect at all and we’re slowly upping the dose so at this stage she is only on 5mg twice a day which will go up to 10mg twice a day by the end.

Beth’s still been ratty with Paul in the evenings and still tells him he needs to go to the doctors, to bed, to work somewhere else, to have a bath. It’s going to be a huge habit to break. Last night however we had a bit of a breakthrough!

I was having sleepovers with Beth once a week until about a year ago. It was usually a Thursday and we’d watch Gogglebox together. Last week we watched it on catchup because for some reason The Office went until 9pm and she has to watch that. Even though she’s seen it 3 million times. And has the box set…. Anyway, we didn’t watch it last week while it was on.

Last night it came on while Paul and I were watching tv in bed, (yes I go to bed really early to watch telly!) and Gogglebox came on. Beth was up going to the toilet so I asked if she fancied coming in and watching it with us. She started off saying no, that we had to watch it on catch up but I said ‘well it’s on now and you’re not watching anything so I’d rather watch it now.’ And she did! Not without some things of course such as Paul couldn’t fart (I of course can fart whenever I want), and not putting his feet near her (I get that one, I hate feet!). She kept looking over at him and whenever she did I touched her hand and said how proud I was of how good she was being. And I absolutely was! Not a big thing for many but a huge thing for us. I have told her that her new medicine will mean that she won’t be as worried about dad anymore and that her anxiety will lessen. So a bit of mind over matter too, just in case it doesn’t actually work! I’ll let you know of any further developments! xx

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She’s in Bali!!!!!

So it’s Monday the 20th of February. Beth left last Monday and I planned on updating every day with photos as I had the week off. Chelsea (who she went with) has kindly sent me daily photos and had lots of lovely things planned including blog writing while Beth was having a wonderful time. I got Monday in with a trip to IKEA with Bridie and a Japanese dinner. Then I woke up on Tuesday feeling crap. And tested positive to covid! Bloody hell! I was clearly too excited about having some downtime! So spend most of this week in bed. Getting better just in time to go back to work today!

So… a rundown of Bali. There are a heap of photos, not in order but there are 20. They’ll just be on the bottom of this post, as usual.

The trip started off pretty well. Beth was up at 3am! to get to the airport and flew out at 10. They were of course all fairly buggered when they got there and had fish and chips for dinner and an early night. In fact most nights so far Beth has had fish and chips! She won’t try any of the yummy things on offer no matter how much they tried. I do know she had meatballs and chips at a Greek restaurant and spaghetti bolognaise and chips at another meal.

Beth isn’t keen on sharing her people and she’s also not terribly keen on others with disabilities, things that she showed early in the peace. Which really worried me. It seems though that she’s getting a tad better. She just wanted to stay home a lot of the time and play on her phone. So they developed schedules for her and she was ok with them because she knew times.

The activities that they have done include a water adventure park. Beth did a river sail then didn’t do it again because she’d already done it. And didn’t want to swim there because they had a pool at their villa so why would she bother swimming there! They had a spa day booked for 3 hours but she didn’t want to do anything but have a bath. She did however enjoy having massages at other times! She had a pedicure and got her legs massaged, and a full body (not the naughty bits) massage. They went to wash elephants down, scrub them with mud then wash them down again. They went shopping and Beth bought a lovely new outfit, seen in the pictures. And…… Beth got a minnie mouse tattoo yesterday! I know tattoos aren’t for everybody but for me it’s a bravery thing. And others her age (and her sister) have tattoos, I wanted her to do something normal!

Bit by bit she got out of her comfort zone, started talking to others more, did more, participated with others more. I’m so bloody proud of her! She’s home tomorrow morning. I will be working the full day but I’m looking forward to seeing her when I get home. And then we start her on the medical cannabis! I’ll keep you all posted on that! Here are the millions of photos I have so far! xx

 

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It’s a new year!

Happy New Year everybody! A bit late but it’s sort of still New Year!

There’s lots of exciting things on the horizon for this year that I’m really looking forward to.

I know that I’ve touched on the fact that Beth is going to Bali. Well it’s next month! She’s going mid February and we’re both really excited. We have the itinerary and I have to say, I’m pretty jealous! Chelsea is the lady who has organised it and I spoke with her last week at length. The things they are doing sound amazing. The place they’re staying in has a villa for the girls and a villa for the boys. Each with their own private pools. There’s a trip to a day spa planned, a half day playing in the mud with the elephants and a day at a water park, all things Beth will absolutely love. (and so would I!) Then there’s things such as releasing baby turtles into the ocean at sunset, eating down by the beach and daily massages if desired. Which is of course a hell yes! Chelsea will be with Beth most of the time and she loves to do them anyway so it’s a win win. The biggest challenge will be the last day when they’re all booked in to get tattoos! Beth has chosen a Mini Mouse one. I didn’t think she’d ever get one. And she may not yet. I asked Chelsea how much so I know what we stand to lose if she changes her mind at the last minute! So, the important things have been asked. Medicine, numbing cream, weetbix availability and charger adaptors for phones and tablets!

The other exciting thing (hopefully) is that we went to see a doctor who specialises in medical cannabis today. He was very good actually and local. I have been wanting to try it for a while for Beth because of her obsessions and her anxieties. As it is illegal in Bali we won’t be trying her on it until after she gets back, but I have the script to be ready when she’s home. Her behaviours all stem from her anxieties and I’ve heard fantastic reports but have been waiting for it to become more mainstream in Australia. For all I know it may have the opposite effect, as did the Phenergan when we went on a long plane trip years ago. Or the homeopathy that had the same problem. So, fingers crossed! If it works I’m hoping to reduce the medication she is on, natural would be a wonderful way of dealing with her anxieties.

So… here’s a couple of photos of Beth at work and one of the 2 of us in the spa on the weekend. Have a wonderful week! xx

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Busy Times!

hello lovely people! I know I said I’d write more often but, bloody hell it’s been busy!  We’ve had so much going on. I worked full time for a few weeks which was great, but didn’t give me time to do things I love such as writing on here!

We’ve had a few things going on with Beth. We haven’t ended up going back to the psychologist we saw because we had a call the day before our next appointment to say that she was having an operation and would be out of action indefinitely. Understandable but still annoying, given that this would have been known about before we were taken on as a new client. And annoying because we both really liked her! Next year we shall try again and see if we can get somebody else or if she comes back, resume our sessions.

Beth’s moods haven’t been as bad as they were. Don’t get me wrong, she’s still having a go at Paul a lot about coughing and other noises but she’s not getting as worked up as she did and it’s not quite as frequent. I’ll take that as a win thank you very much!

As far as Coco is concerned, Beth is taking her ownership very seriously! Which has been wonderful. Coco sleeps in a crate next to Beth’s bed. This will be a) until I think she won’t wee in the house overnight and b) until I think she’ll stay on Beth’s bed instead of creeping in to ours. At this stage she enjoys coming in with us as the other dogs are usually in there at night. Beth comes out of her room about 10pm and calls ‘Coco, wee wee” and off she trots with Beth to go out for a wee, then Beth pops her in the crate for the evening. If she wakes in the night (before 5) Beth will take her outside and put her back in the crate but if after 5 she leaves her out and Coco will often come back in with us. I’m ok with that. After all, guide dogs are raised by completely different people for the first 18 months of their lives. Coco won’t start proper training until she’s speyed at about that age and it’s important that she’s a part of the family also. Plus, she’s so gorgeous with such a nice nature that I love cuddling her too!

It took a while for the other dogs to get used to her but she’s part of the family now. There’s something about labs, Minka was an amazing dog and now Coco is turning out to be too. We also got yet another kitten for Bridie. She sleeps downstairs in Bridie’s bedroom in the garage but when Bridie has been away I’ve been bringing her up to the house during the daytime. I won’t tell you how many we have now but it’s a few! So I’m sharing photos of Beth with the animals, a few at work, and some of us when we went to Santa’s magical kingdom last week! Oh and of the lovely reindeer Beth got this morning when we had our pedicures this morning. The girls are lovely with Beth and were very happy to do them for her!

Have a wonderful Christmas everybody! Let’s hope 2023 will be a year of happiness and health (with a little bit of wealth and fame thrown in please!) xxx

 

 

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