so….. this one is for all my fans and air conditioners who were subscribed to my blog and stopped receiving notifications! I’m so sorry, I didn’t realise this was happening until a friend said she wasn’t receiving them any more. You must have thought I’d stopped writing! I wasn’t writing as often but I still wrote fairly frequently and lately have been writing a lot.
There was a change of host for the blog and a lapse on my behalf and then, when it was back up and running, I typed away and shared on facebook which people could still see, but no posts were going out to subscribers.
So, you’re in luck. The fabulous duo of Sarah and Beth are still around and as amazing as ever! If you get this and feel like it, go back and check out the last couple of years. I am tempted to start either another blog or add another name to this one to make it more about Beth as an adult and how it effects me. I’m thinking autism and me. But, I don’t want to lose all of this as I’ve been writing this one for years. Even though Beth is now an adult, there are people out there who would still benefit from our early years posts and my witty and scintillating banter.
We have new challenges as I’m sure you can appreciate, and more ahead. But fun things going on too, and lots of new experiences for our girl. So please stick with it for me, and share if you fancy doing that too! Welcome back! xx
In case you missed the hint, Beth went to the zoo today!
Last week I asked on facebook if anybody knew of people who would be wanting a job taking Beth to social outings. She’s been quite ratty lately and part of it is because she’s probably bored, and part of it is because she wants me to do things with her ALL the time and I just can’t. Timewise or energy wise! I had several people respond and spoke to a few lovely ladies. One of them is a friend from school’s daughter Caitlyn. As another lady pointed out (Thanks Vicki!) it was probably best to have somebody who is a disability support worker because, things can get a bit unpredictable at times. Usually if Beth is happy it’s really cruisy. She’s good natured and easy to be around. But… if something happens, your average Joe may not know how to handle it. Somebody with experience is better at dealing with these times and knows what to do in difficult situations. So…. we met Caitlyn last week. And she’s wonderful! We do know that she is possibly not going to be Beth’s support worker for the whole time but she matches staff to the participants and will know what Beth wants. I particularly wanted somebody who is young so that instead of it being like a mum figure she’d be like a friend.
Today was the first outing they’ve been on and of course Beth chose the zoo! They just got home. Caitlyn said they saw about half of the zoo, so they’ll have to go back another time. They saw the elephants and even saw some behind the scenes things such as medications for some animals. I might even tee up a visit where they can properly go behind the scenes as I’m pretty sure they have those too. Beth loves it there and the bonus was that they had kfc for lunch, perfect for my girl!
Next week Beth has chosen the Van Gogh exhibition in the city. She’s making the most out of having a new friend to take her out! I’m so happy for her. And me! Here’s a photo of Beth and Caitlyn (and Maggie and Lola) before they went out today xx
So…. we have a few things in the works at the moment. I went to the doctors last week and spoke with her and we both agreed that Beth may be playing up because she’s bored. I haven’t really thought much about a regular outing for her. Beth really enjoyed doing her fortnightly art class and we haven’t gotten in to anything else since. I just kept thinking about how I just don’t have the time to do everything she wants to do. The dr suggested I find somebody to take her out so I took her advice.
I met Caitlin this morning. She’s lovely and was suggested to me by an old school friend as it’s her daughter. She works for an agency who deals with the NDIS and we sat down with Beth and chatted about what she likes to do. I have another young lady to meet soon who does the same thing so I’m going to see how we go, alternating may be a good thing or more frequently? We are doing every second Wednesday starting in 2 weeks. The list is huge, from going to the zoo to going to the art shop and coming home and doing art. So many things. Beth wants to go to the Van Gogh exhibition, she loves the library, she loves the beach, she loves the museum! And of course I’ve had the mum guilt. Not wanting to do all of these things all of the time but trying to keep Beth’s life enriched and enjoyable. So now she gets to do it all but with somebody younger so it’s like going out with a friend. I’m excited!
Another exciting development is that Beth is going away for a couple of days! There’s a place near my sister’s house in Maryborough that is a farm stay. We went to visit last time we were there and Beth really liked it. I’m trying to get her used to being without me and I think it’s a good way of doing it because it’s full of fun. She could choose one big activity to do and she’s chosen horseriding. On the other days there is cooking, going swimming and fish and chips in the park, they’re always doing something fun. She’s so excited! We’re going up on Saturday to stay with my sister, then on the Monday when I come home Beth will go across to the farmstay and be brought home on Wednesday. I won’t know what to do with myself! I’ll be driving home alone but I’ll have my true crime podcasts to keep me company! I don’t get a chance to listen too much as I catch the train to work usually.
I’ll leave you with some Beth funnys. We had the spa fixed a little while ago and Beth and I have one most days. She’s been asking questions and they’ve been really specific! On the weekend she casually asked “is it true that if you fart when giving birth that your baby will get diabetes?!” I explained that you do a lot worse than fart and that none of them have diabetes! She then asked “is it true that you shit yourself when you die?!” Now Beth usually doesn’t swear so it’s weird to hear her do it, not that it bothers me really. Anyway, I told her yes, you poo and wee when you die because all your holding muscles are letting go. Not sure if that’s the right explanation but it’s the one I gave as it makes sense to me! Have a great week everybody! xx Here’s some Beth at work photos! x
Well, drumroll please, ………. Beth got her ears pierced! That’s huge for her! I’ve been suggesting it for years but she’s resisted it. Then a couple of weeks ago she decided to ‘face the fear’ and go out of her comfort zone. I double and triple checked, I don’t want her to feel like I’m pressuring her. I’m not sure why I really wanted it. I always enjoyed taking Bridie to have piercings and I do love them myself.
Anyway… we’ve been having spas most nights and Beth is quite chatty there. So she started talking about it and I said that there’s a lady that I go to, Maddie, who works at Hairhouse Warehouse at Knox. She did my daith piercings when I was terrified and she was just beautiful. I’ve seen her a few times and I really like her. I bought some numbing cream and as today is my day off I called to see if she was working and she was. So I put the cream on and off we went! Beth was allowed to hold my hand (they don’t usually allow another in) and Maddie organised it so that another girl (also Beth) would do the other ear at the same time. I wanted the needle rather than the gun and they were quick, and so wonderful with Beth! By the time we got back to the car the feeling sick had finished and she was rather proud, enjoying her lollies and happy for me to take photos! From a kid who had to get sedated and held down to have needles I’m so bloody proud!
We’ve been off work since Christmas. It’s very different to the old days when I couldn’t wait for the school holidays to be over! It’s been fairly cruisy. Both Beth and I are back to work on Monday.
We had a lovely Christmas Day. We spent it with Paul’s side of the family and Beth even had a little dip in their pool. She’s been quite emotional lately though so she had a bit of a meltdown which she normally doesn’t do outside of home. Or work. She knows that we now don’t trade presents but I guess last time I took presents wrapped for our kids so they wouldn’t feel left out while all the little kids got theirs. I explained all of this to Beth and suggested she took her books to read so that she still has a present that she had taken with her. Sometimes I find it difficult because she knows all the right things to say, especially if her mood is ok, but when she’s in a moment, all sense goes out the window and emotion takes over. I had to take her out of the room and talk quietly to her. She calmed down and went in the pool which helped but I must admit I felt sick and shitty that it just isn’t stopping and in fact in some ways is getting worse. When she’s like that she is expecting me to constantly say how much I love her, how I need to stop work and take her and pick her up from work, how I need to move back into her room. She has hated the days home when I haven’t planned something with her and it’s draining. When I tell her it’s my time off she corrects me to ‘our time off’. So she’s obsessional with Paul in a bad way and me in a needy way!
There has been some lovely moments though. We have been to the beach twice and went to visit family friends for boxing day and she had some time in the pool there. Mind you, she was ‘want to watch me Mum?!’ She loved the beach and really made me want to move there. I need to pull the finger out with my business I think!
Christmas was a success, with lots of nice pressies. I took Beth to the movies and she got to spend her money from Grandma and Grandpa on books, which she loves. We went to see Sing 2 which was great.
We had a little bit of excitement yesterday. I have been speaking to a driving instructor about Beth and she said I could bring her along to Bridie’s driving lesson and she’d give Beth a go. She said because it’s private property she wouldn’t need her learners. As organising her learners and lessons involves an occupational therapist, a doctors letter and an optometrist letter, as well as a reassessment for her NDIS plan I thought that would be a good way to see if she actually enjoyed it.
It’s a huge area with proper roads and signs. It was pretty scary but Beth got the hang of things such as the food pedals and was a star at indicating and hand breaking. But she wasn’t great at looking at the road, or staying on the left hand side of the road. When she had to use the pedals she would watch her feet the whole time and she drove into a ditch twice. Still, it was the first time. When we got out the instructor shook her head. She said that she didn’t feel that Beth could ever drive on a normal road. I said that I am under no delusions, I am well aware that she wouldn’t be able to drive on a road but that she had said that Beth could have lots of lessons there. I explained that I wanted her to have traffic awareness and I feel that this may give her perspective when crossing the road etc. In the end she said she’s happy to do it if I want to.
I explained it all to Beth, said she has to look at the road all the time and know what side of the road to be on etc. I said that the doctors form might not get her through, or the occupational therapist report, or her learners so she has to be prepared for that and she said she still wanted to do it. Even when I explained that she would probably never be able to get her actual licence.
So… I’m feeling a little shit at the moment. I love my girl so much but sometimes I fucking hate autism. It’s so unfair that she can’t do what others find easy. Crossing the road, watching tv with laughter tracks without having to hold their ears and run out. Cope with not getting a present like ‘the other kids.’ Have a boyfriend. Go out with her friends like her siblings. Have a friend….. I know there are so many with more difficulties and truly, I’m grateful for what I’ve got. But when I started this blog I wanted to write it warts and all. I like to stay upbeat but I also get down at times. Don’t stress, I’m ok, but things like yesterdays driving lesson, even though it was exactly what I thought, still throws me at times.
So I’ll leave you with a Beth funny. She bought me a mug for Christmas. Picked especially for me. It says “I love you more than chocolate.” I said ‘how lovely, you love me more than chocolate, that must be a lot then!’ She then said ‘I love you both equally!” Thanks love!
This year has gone by so quickly! I wrote a date of April 2021 at work the other day and thought nothing of it. In fact I had to think about what month it actually is! I must say, we’re all pretty excited about Christmas here. It’s been such a shit couple of years with covid so I’ve gone a bit overboard with the presents this year. It’s time to celebrate!
Beth has been a little bit down lately. She’s been terribly moody and still not very nice to Paul. We did have one night when we took her samsung tablet and phone away from here which was like we had killed somebody as far as she was concerned. But you know what it’s like, you can’t threaten to do something unless you are willing to follow it through. At least now she knows that we will do it, the threat of that seems to be enough to stop her in her tracks now. That and the old ‘are you being naughty or nice’ question!
I had a big talk at the beginning of the month because she’s been on Paul’s back about his cough. So I said to her that it was time to break the habit, that if she did really well for the whole of December, I’d make an appointment for him myself to see a specialist. I’m sick of it too! At least then we can hopefully either get something for him to stop or be told that it’s something that will stay but it’s not serious. Beth has agreed to that and I just have to remind her a little and she does the big sigh and ‘I know!’
I’ve just started her on the Omega tablets that are part of my business. She has been taking the NRF2 for several months now which has really helped. And their probiotic is fantastic as it’s slow release so doesn’t disappear before hitting the important bits! The Omega are for brain health so she started them this morning. Will see how she goes.
We had a big day in the city on Sunday. We went to a cat cafe that had been recommended. She loved it there, thought it was fantastic that they were just wandering around. I told her we could add one to our eventual one day gym! She could work in there no problems! We planned on seeing the Myer windows but the lines were ridiculous! In the afternoon we went to the Disney exhibition at ACME which she really enjoyed. We all went as a family which is rare to be able to coordinate these days, so it was a nice day out.
Beth started her virtual reality therapy today! We received the headset in the mail so I set it all up this morning. She quite enjoyed it really. She did a little bit of boxing and some deep breathing to help with her anxiety. The therapist is devising a personalised program for her and she can do it at home 3 or 4 days a week, one of them being her session with him. The only thing I’m not sure about is that it has lovely calming music while you’re doing it. I could hear the therapist talking and telling her what to do, and I could hear the music in the background, then she asked if the music could be turned off. I don’t think it can! When I set it up this morning it seemed to be on all the time. So… if that becomes an issue I don’t think it will work for us. I’ll let you know how it goes!
I am shocked! I was thinking here I was, popping a new post on every month or so, then when I came in I realised that I haven’t posted since July! Time gets away from us all hey?
So for those readers who aren’t in the lockdown capital of Victoria, we have literally just been allowed out of lockdown. As in last week! The shops are bedlam and the kids are happy to be able to see their friends again. I think that’s been the hardest thing in our family. My son is in his first year at uni and can’t attend any lectures, my youngest is doing beauty therapy in VCAL and has only just been able to go back to placement and her tafe course. I have been lucky to work through as I am deemed an essential worker.
Beth went back to work a couple of weeks ago. She only goes 1 day a week and surprisingly she couldn’t wait. Not that she doesn’t like work, she loves it in fact, but she also loves being home playing on her tablet and watching tv. Not unlike me really!
We have a couple of things planned which I’m rather excited about. One is that I was organising some driving lessons for my youngest girl Bridie. I was looking at the instructors facebook page and noticed that she teaches special needs children. I was chatting with her about Beth and how I really didn’t expect that Beth would ever be able to drive, she still hasn’t even got much road sense when crossing the road. The instructor told me that some students she teaches for 3 or 4 years. She works with lots of people from special schools and they have a site that is on a huge amount of land with roads and signals etc, set up as if to be a proper driving situation. They learn there for as long as they need to before venturing out on the road. I think it’s worth while doing! I’m actually really excited about it. I don’t care how long it takes for her to get her licence, if at all. And it should instill more road and traffic awareness if she’s on the other side of the wheel. She needs an assessment done by an occupational therapist and a review of her NDIS plan to be able to get it all funded. I’ll keep you posted!
One of the other things I’ve seen, that I have to look into further is a virtual reality type of therapy. I’ve seen it advertised and it helps anybody with anxiety and sensory processing difficulties, which is where a lot of Beth’s anxiety comes from. It looks great, and again it is something that we can get funding for. It is a way of teaching meditation and mindfullness while having a bit of fun. I think! I will be speaking with the organisers to plan a program with them so that I can run it past our plan manager first but I’m hoping it’s something that helps.
I’ll leave you with a Beth funny. She got new glasses a few weeks ago and during the assessment they must have had it set up for a Chinese person beforehand. So Beth’s going through the letters on the pages and the new page comes up. The assessor asked if Beth would please read the middle line and Beth says “chinese character, chinese character, chinese character, chinese character, chinese character!” I did have to laugh! Rather than just saying that she couldn’t read Chinese she did it to the best of her abilities!
I’ll keep you all posted with our new developments! It’s time to do Christmas shopping! Here’s a photo of Beth who decided to dress as Bob Hale from Horrible Histories for Halloween! Byeeee! x
July is always pretty full on, mainly because it’s when my birthday is and I make the absolute most of it, also making sure my kids do too!
Unfortunately this month hasn’t all been enjoyment for us. My Wednesdays (my day off of work) have been filled with appointments for family, and for animals. Earlier this month we lost our lovely Minka. She was a fantastic dog. For my (much) earlier readers you would know that we got Minka as a companion dog for Beth. She was a ‘reject’ guide dog. I think they were planning to breed from her but decided not to. We were on a waiting list for about 18 months and she was well worth the wait. She was a brilliant dog. She would have made a dreadful guide dog in the early days though! If we went visiting she would poo in somebody’s house. Only once! Never after the first time. She would chew sticks. And she would belt across the main road if she got out (and she did once, nearly causing a car stack.) I envisioned a blind person getting out of bed, standing in poo and grabbing his eaten stick, then being pulled across the road! And, she never got out of the habit of eating the other dog’s poo! Maybe that is the secret to a long life. She was 14 and a bit. She was deaf and incontinent at the end as well as being arthritic. I took her to the vets for a lump on her leg and it turned out that she had another one on her tummy. The vet asked lots of questions and we realised that there were a lot more signs of old age illness that realised. Lots of drinking, lots of weeing. It was just her time. I came home and got Beth and Bill and took them back to the vets and Paul met us there. It was as nice as it could be and she fell asleep giving us a cuddle. She was the first of the pets gotten after the kids were born. The other dogs are missing her and it’s very different without her. Beth, in her own lovely way, said how much she’d miss her and asked if there was a shelter on the way home that we could pick another pet. I know she’s not talking about replacement, maybe just something to take her mind off?
Just this last week we had another drama. Beth ended up in hospital for 2 nights! She had tummy issues a couple of months back and we went and had blood tests and an ultrasound but nothing definitive was found. She had antibiotics and got better. This time I took her to emergency. They did a urine test which showed infection and they put her on a drip because she was really dehydrated. They also put a cannula in her arm (I scared the shit out of her by asking if they would be using a catheter!) I asked for that so they wouldn’t have to keep taking blood. They ended up using it for the drip anyway. She was excellent as she is petrified of needles and she ended up having 3. Still won’t get her ears pierced though! They scanned and fasted her in case it was her appendix.
I slept on a dining chair (or more to the point didn’t sleep!) They then transferred us to a ward where they continued fasting her until 3pm when the nurse came around and said she could eat. I said we hadn’t heard from the doctors and I assumed it wasn’t appendix if they were letting her eat. They said yes, they’d try and get the doctor to come that afternoon but if not it would be the morning. The full urine tests hadn’t come back yet. They said I would have to sleep on a dining chair again. When they completely missed us for dinner I cracked the shits and said it wasn’t good enough, they couldn’t expect me to sleep on a chair, I am her carer, I was doing most of the looking after her to make it easier for them. They sent the doctor to chat, made us something to eat and gave us a single room with a mattress on the floor! The next morning we were told it was more than likely a UTI, gave us antibiotics and sent us home. They did say they want Beth to see a gynecologist as the pain wasn’t necessarily like a UTI and she had no problems going to the toilet. Plus, when she had the pain before tests didn’t show a UTI. So now I’m looking at sending her to one which will be fun!
Other than that the month has been fairly good. Beth’s communication has been excellent, though not always positively. She’s letting us know what she wants though and explaining herself. Bill brought her up to Eastland to meet me after work one Saturday and we all went to see Cruella which was lovely. So nice for the both of them to do that. And Bridie has been watching movies with Beth and other fun things so that’s been lovely too. ‘
Lockdown has been hard for the 5th time, for everybody I’m sure. Beth will be back at work next week and she said she’s actually looking forward to it so fingers crossed all is well!
We’ve had a good month. Beth seems a bit more settled as far as obsessional behaviour is concerned. She still isn’t happy about Paul if he coughs or yawns loudly but it is slowly getting better. She’s becoming a little more tolerant which is lovely.
Mind you she had a doozy of a tantrum a couple of nights ago. One that only comes around once in a blue moon thank goodness. When she has those I just want to run from the house. She goes on and on and I know I’m making it worse by reacting badly but it gets me so on edge! She pretends that I’m talking to her and says what I should say. We went to visit my family on the weekend and she wanted to go for a sleepover but we changed it to a drive there and back on Sunday. So she starts off a little whingey and I hear the shake in her voice and know it’s coming. She starts with her saying ‘we can go up for the night’ then, being me, saying ‘yes sweetheart we can go for the night, good idea’ and there’s me in the background saying ‘No, I’ve told you we’re not going for the night!’ This escalates until I am saying that she’s really pissing me off and her saying (in my voice, really high pitched) I love you Beth, and kissing my hand. It was really horrible as I knew I had to calm her down yet I just wanted her out of my face! Usually I’m ok and am the one to calm her down but Paul ran her a bath and she settled down after that. Not a proud moment but hey, I’m only human!
Other than that big tanty Beth has been pretty happy. Still only doing one day a week at work and one PT workout a week. She was really good at the last 2 workouts and didn’t whinge or carry on or need to wee or need to poo or say she’d vomit or have to sit down! She did the workouts and Mel told me that she was really good and made a huge effort. She even gave Beth a surprise chocolate bar this week as a reward. On the way home we were chatting about Mel and I said ‘I love Mel!’ and Beth said ‘I love her too!’ It was so sweet!
Beth went to visit her aunty on Saturday when I was at work. Paul took her and his parents and she got to meet their new dog. So I’ve popped in a photo of Beth getting to know Frankie. I love how much she loves her animals. Also some of her at work and a cool one of her as a cartoon. If you’ve not seen it, get the app Voila, it’s so cool, there are a few different types you can do. Have a great week everybody! xx
So, we’re in yet another lockdown! 4th one since last year. I’m so pissed off. My beautiful niece had a baby last week and I’m desperate to visit them but because they live in the country I’m not allowed to just yet. As I work on Saturdays I only really get to visit on long weekends, which we have next week. I know we’re keeping everybody safe but I’m a tad over it. And really, compared to so many others, I’m not really affected much at all. Just having a whinge!
Beth is doing well. She’s still doing her one day a week at work. We haven’t had a chance to organise another day or 2 yet. One art school hasn’t gotten back to me with a time to visit and with lockdown again it’s hard to pin people down. Because Beth has a low immune system too, we keep her home through the hard lockdowns. We’re starting to give her jobs again, she needs to start doing more. She’ll lie in bed all day and watch tv, playing on her tablet if she’s allowed. Hell, so will I! It becomes habit though and it’s harder to get her up and around.
I went to Queensland the weekend before lockdown started. So bloody lucky we squeezed it in! It was a training weekend for my business that supplies the amazing tablets that Beth and I are on. I’d taken Beth to any catchup meetings we had before the weekend away as they’ve been at friend’s houses and, working on Saturdays, I don’t get to spend as much time with the kids as I’d like. So of course she was mighty pissed off that I was going away with them because they’re her friends too! We kept in contact while I was away but as the plane landed back home I had several messages, worried that I hadn’t told her I’d landed yet. Mainly because I hadn’t! I couldn’t get signal of course, but she’s terribly impatient and will send messages every minute asking why I’m not answering her.
She’s doing well on the tablets. Let me know if you’re interested in knowing more and I’ll send you some info. The latest thing I’ve had happen is when we went shopping. She’s more involved in picking the foods and carrying them which isn’t something she’s been keen on before. Also, and she’s never done this before, as the bags were being filled Beth independently took the bags and put them in the trolley for me, then pushed the trolley! This is a new development and, like the others, not huge for most people but huge for us. It’s another independent process, from actually thinking about it to doing it without being asked.
The other thing I’m loving about my business is that it’s growing each month. As most of you know, my eventual plan is to open a gym for adults with disabilities. I can see that happening now which gives me a huge goal for Beth as it will (along with myself and my friend Eloise) be her future security that I so desperately want for her, even if she (at this stage) doesn’t. I really hate to think about when I’m not here but one day it will happen and I suppose I’d better get my shit together and be prepared!
So, have a wonderful week everybody! Good luck to those in lockdown. To those who aren’t, enjoy you lucky buggers!
