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An eventful July

Posted by Sarah on Jul 30, 2021 in Uncategorized

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!

Thanks for reading! xx

 
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End of June 2021

Posted by Sarah on Jun 28, 2021 in Uncategorized

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

May be an image of dog

 
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June 2021

Posted by Sarah on Jun 4, 2021 in Uncategorized

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!

 
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April 2021

Posted by Sarah on Apr 14, 2021 in Uncategorized

I can’t believe it’s April already, it’s bloody ridiculous! Feels like we’ve just taken down the Christmas tree!

We’ve been plodding along! We’re still looking into what Beth will be doing for her second day of the week. She is working Mondays still at A Twist of Willow in Mount Evelyn, the nocturnal zoo. She really enjoys going there and absolutely loves the animals, is quite fearless around them actually. Here she is with one of the pet rats. They offered her a hand reared one but Paul is absolutely dead set against it, even though Beth and Bridie would have a menagerie if I let them! It’d be a pain in the arse with the cats mind you. The whole point about these ones is that they are really tame, but if we have cats around the rats would have to stay in their cages.

Beth used to work 2 days a week but on the Thursday she was constantly sick, or making herself sick so she didn’t have to go. It’s so hard to tell with her! It’s such a balance between believing her and allowing it and trying to make her go when she’s clearly not wanting to for whatever reason. And often getting a call to say she is sick. She won’t say if anything is actually happening and I don’t think there is. If I suggest that we have a change and find somewhere else she gets distressed as she says she doesn’t want to leave.

We had a 3 week trial on a Thursday at a reptile organisation. I thought it was perfect for her as it’s still animals, she is free on that day, and the lovely girl we saw offered to pick her up! She was keen on the visit we did but then after the first week the lady with her said she didn’t want to do anything, wanted to go out in the car but wouldn’t go in the store, wanted constant breaks etc. I was so embarrassed! Beth knows it was the wrong thing to do. I have a good talking to her, she was very apologetic and tried again but was still out of sorts. Not like her at all, especially in a new setting when there hasn’t been any issues yet.

She is really keen to start up art again. Her art teacher is coming back at one stage but we don’t really know when. The organisation she went to in the past for writing has an art program on a Friday so we’re going to go and check it out when they come back from holidays. They’ve moved from their old premises so maybe a fresh start? Beth wasn’t that keen originally because it’s an obvious disability organisation which she’s not keen on but we’ll see! Otherwise I may look back into the tafe course she started last year who had a day one on Fridays. That would require the train trip and carer again so might keep that one up my sleeve as a backup if need be.

As far as the nrf tablets are concerned, I’m really happy with Beth’s progress on them. She turned 22 last month and we, as usual, went to the movies. To see Peter Rabbit 2. Which was actually really good! I told her that now she’s 22 she had to be more tolerant of her dad and stop yelling at him and having a tantrum if he coughed. Or any other noise he makes. Note to self, don’t tell him in front of Beth to stop breathing so heavily in my ear! Each night we have a chat and I let Beth know that I’m really proud of the way she’s coping and not yelling at Dad so much and that she’s being such a grown up girl. And she is responding! She is still annoyed by him. Me too at times! But she’s coming out once to tell him to go to bed, if that. And the other night she came out when he was watching Whose Line is it Anyway. She doesn’t like that show because it has very loud laughter track which she has always hated. She came out, asked when he was going to bed and went back in her room! Usually she’d either object or try and turn it off! Beth is on the trio pack. NRF1, NRF2 and probio which has helped her gut problems so much! Let me know if you’d like any information.

We had a visit to our lovely osteo this morning. Beth often needs cranio sarcral therapy for headaches and earaches which stem from her grinding her teeth in her sleep. After dentist and doctors visits we went back to what she had done years ago and it relieved it instantly. So here she is with our lovely Steph! Have a wonderful week everybody! xx

 
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Progression

Posted by Sarah on Mar 3, 2021 in Uncategorized

Well, as I had hoped, little things are changing within Beth which is pretty exciting for me. I have just upped one of her tablets – the NRF2 – which is the one that you see the most difference with. Due to tummy issues we had to only give her half a dose until the new probiotic kicked in and she seems to be coping much better with it now, just shows what can go on inside that we don’t necessarily see!

The differences I’ve found have been with her communication. She is more spontaneous, she is offering to do more things, she is wanting to spend more time with us. I wrote a testimonial on the page of the business. The exciting thing for me was something small but significant. On the days Beth is home I write a little checklist for her to do jobs. They aren’t big things but they give her a sense of purpose. She unpacks the dishwasher. She unpacks the toilet paper that comes in a big box. She will empty the bins from the bathroom into the big bin outside. Often I’ll have fun things in between such as take a selfie with the dog, or, be awesome! Or ones she has to hunt for such as take a photo of the plant in the red pot with the orange flower. When not doing gym there would be some exercises in there like – do 20 step ups on each leg. Anyway, you get the picture! On a Thursday I have a sleepover in her room. Her siblings often have sleepovers, Bridie pretty much most weekends! Beth doesn’t, so I’m her sleepover. On a Thursday she doesn’t have a checklist because she works, but I’ll ask her to change the sheet, putting the dirty one in the laundry and putting a clean one on. I’ve taught her the trick of the tag going in the top left hand corner! On Tuesday last week I had already changed her bedding so I didn’t bother asking. On Thursday when I got home from work she was most excited to let me know that she’d changed her sheet. She said ‘you forgot to ask me!’ Oh my effing God! Small for some but huge for us! Plus, she’s wanting to watch movies with Bridie as well as be in on her driving lesson and getting a haircut. Just because she wants to join in!

Beth did cooking this morning with Lachie, they did chocolate brownies. Lachie said that Beth was reading out the recipe to him rather than getting him to tell her what she needed to use which is what she usually does. So, small but significant steps. If you want to look up medical information, just google NRF2 and autism. And of course, let me know if you’re keen on knowing more, I’ll send you some more information. Here’s Beth with her brownies. I love how she holds her tongue when she’s concentrating, so do I! And can you tell, she clearly licked the bowl when she’d finished!

 
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2021!

Posted by Sarah on Jan 27, 2021 in Uncategorized

It’s the start of a new year (actually nearly the end of the month – wtf!) and I am sure I’m not the only one who is glad 2020 is over!

We’ve had a couple of slack weeks for summer. Beth is back at work and seems to be enjoying it but who knows. She’s been a bit up and down mood wise at times but last week she was complaining of a tummy ache and it ended up being a UTI. Because she can be a bit of the boy who cried wolf I can’t tell sometimes if she’s really not feeling well or if she just wants to stay home.

I’ve discovered some new products which have really great feedback from other mums with special needs kids. Google NRF2, especially PUBMED documents and there are promising articles on the subject. I’m a bit dumb when it comes to scientific stuff! Luckily for me there are very knowledgeable people who work within my business who can talk the talk when it comes to how it all works. So please, let me know if you’re keen on trying the products and I’ll set you up in a chat once you’ve had a look at some testimonials!

So, so far with these tablets, Beth has already shown a bit of improvement. She seems to be happier. And more chatty. I am taking them too and I am finding that I am already calmer and sleeping better. There are so many benefits to them! They say for full effect it takes 1 month for every decade you’ve been alive so mine feels like it will be forever! But… we’ve been on them for just over a week so far and I’ve already seen these differences. The brain fog is lifting and the energy is coming back – woohoo!!

Beth started back at cooking today with Lachie. They made bread today and we just ate some for lunch. It was yummy! She really enjoys cooking and seems to really enjoy Lachlan’s company too.

I’m going to look around for another art school also. I’m hoping that as the NDIS has been around for a while now that a few other schools might pop up. While she is enjoying being with the animals at work she is always asking when she can do art school. So I think it’s time to explore other things too. Ash is going to come back and teach her art at home but it would also be good for her to do a day program if one is available.

I hope all of you are well and that 2021 has gotten off to a good start?! Speak soon xxx

 
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Improvements

Posted by Sarah on Dec 6, 2020 in Uncategorized

We’ve had lots of improvement lately in Beth’s mood, it’s been lovely! Lots of bits and pieces going on.

I think it’s partially been because she’s had a few things to do. It’s very easy to just let Beth sit in her room and watch tv or play on her tablet, there are times that you wouldn’t even know she’s there, unless the wifi stops working or she gets hungry! That is of course not good for her however so I have to try and think to get her moving and mentally busy.

So, there are 4 things that have been contributing to Beth’s mood I think.

  1. Her Omega Q tablets. She’s been taking them for a few weeks now and there has been a vast improvement in her mental alertness. It’s said that kids with autism are often thought to actually be deaf before diagnosis because they get so absorbed in their own world that they just don’t listen or respond. Beth is very good at that! Since being on her tablets though she is more alert and often says things without being asked, quite spontaneously! This is fairly new for Beth, as an adult anyway. She could be quite chatty when younger, when the mood took her. She was in the school choir and loved to sing. Now, that Beth is showing through again and I’m loving it!
  2. Her cooking lessons. Lachie is a lovely chap and Beth seems to really like him. As she is choosing what to cook Lachlan guides her how to do this, they sit and have hot drinks and it really seems to be a good fit. As you can see, she has made some yummy foods! This week it was gingerbread men. (didn’t realise how many bloody cutters we had!) In fact not so much men (though there were a few ninja bread men). She also made the crowd favourite of chocolate truffles which went down very well! I’m so pleased that this has become a regular fortnightly thing. We will be alternating with art lessons, probably starting in the new year, another thing that she loves. I have got her a cheap version of a kenwood chef mixer for Christmas as most weeks they use the hand beaters.
  3. Cranio Sacral Therapy. (I think that’s how it’s spelled!) Beth had it years ago and I’d forgotten about it. We go to an osteopath and she hadn’t been for a while. We had been going to assess her for her personal training but that was quite early on. Beth had been grinding her teeth, giving her toothaches and earaches. I had taken her to the doctors multiple times and to the dentist but there was nothing wrong. We tried to get her a moulded mouth guard but she gagged so much that she vomited into the poor dentist’s hand! Luckily she had a glove on! I had our lovely osteo work on my jaw which immediately alleviated my headaches so I thought I’d try Beth again. Since she’s had that done she’s improved so much. Plus, when we went yesterday, I saw how much it was hurting beforehand as her jaw was really tight. So that has made a big difference.
  4. lastly, it’s Christmas!!! Beth loves Christmas. She helped me do the tree, she loves the music and the advent calenders, all the things that the other kids don’t really bother about. Except the advent calenders, they still all love those! She’s singing songs and jumping around, loving it all. She’s already decided that she’ll make shortbreads next week at her lesson and she’ll then give some out as presents.

So, all in all, things are going really well! Hope you’re all getting organised? I’m really not, but trying! Speak soon! xx

 
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Cooking again!

Posted by Sarah on Nov 18, 2020 in Uncategorized

For those of you who are long time readers you’ll know that every Christmas Beth becomes obsessed with Here Comes Christmas candycanes. Before you ask, it’s from a My Little Pony story. And no, it’s not possible to get one. Or to make one the way she wants. But… it still doesn’t stop her from asking constantly for one. every. single. year. When she was originally doing art with Ash Beth asked and Ash and her made a fabulous large paper mache one with glow in the dark glitter and Ash filled it with goodies for Beth for Christmas. There was a lot of planning and thought went into it. None of it mine mind you! The issue is that we can never make the real deal because it’s magic!

Yesterday Beth had cooking with Lochie again and of course she asked to do something along the here comes Christmas candycane idea. So they made chocolate muffins with sprinkled candy canes on the top. Of course I forgot to buy the peppermint extract. And the icing sugar! I found a packet mix for cupcakes so they used that icing instead and, the muffins tasted delicious without the peppermint flavour. When Lochie went to move his car I found Beth licking the spoon and bowl with it all over her face! She looks really happy with herself here!

It’s been a long time since I’ve seen Beth enjoy herself as much as she is in this photo. She loves doing things with me such as pedicures or going to the movies or taking the dogs for a walk. But if I take a photo she forces herself to smile. She used to sing songs and dance around and as she’s gotten older a lot of that enjoyment seems to have gone from her. That’s why I was so excited when I asked her to smile and she let out that beautiful beaming one. Hopefully things are on the up for us all. I want her to feel like smiling more, not just because I’m telling her to.

On the supplement front I truly believe that her Omega Q brain health tablet has been helping. Her mood has been so much better since beginning it. I have only been giving her one a day, even though it says 2, so I will up that when I get the new delivery next week. Her conversation has been better, she’s been asking me questions and truly wanting clarification in the answers. She is suggesting things we can do and really looking into them before suggesting. And she’s been great at work by all accounts. So it’s a big tick for that one! I’ll increase this one and assess before I add other supplements but so far this one’s a winner!

Please let me know if you are keen on trying any of these out and I’ll send you a link. As always, every supplement and treatment is different for every individual, just as all of our kids have individual personalities and reasons that they are the way that they are. All we can do it trial and error at times but so far so good for us with this particular product.

 
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Start cooking!!

Posted by Sarah on Nov 4, 2020 in Uncategorized

I’m rather excited now that things are opening up again! Yesterday Beth started doing cooking with an organisation called I Hate Cooking. I found them via facebook as I saw they are an NDIS service provider. Beth enjoys cooking but we don’t often do it together. I contacted them and they sent a lovely young man out called Lochie. For their first cook they did scones because it’s nice and easy. That gave them a chance to get to know each other too. Beth is pretty pleased with her goodies. I loved the taste too, though they didn’t agree with the new dentures I got on Saturday and I very nearly had my bottom ones fall out in front of our lovely new friend! Here’s a piccy of the 2 together! BTW I told them to take their masks off for the picture, they were social distancing at this coffee and hot chocolate stage!

The other exciting news is that Beth’s lovely art teacher is coming back! Beth loves art so much and really enjoyed making all her creations as I know a few of you enjoyed when we did the calendar in 2018. This year has been such a shitshow for so many things and Beth has gotten used to doing not very much, so the hope is that there will be something each day now to keep her busy.

As far as the next stage in supplements go we did try the greens in her shake as it’s so very good for you. She could taste it in that though and, even though she drank it, has politely said no thank you every time I’ve asked since. Seeing as I can’t have actual food atm I’m going to make myself up a nice smoothie for lunch with lots of goodies from our lines so will pop some in myself to see what it tastes like then make one of them for Beth. I’m thinking frozen raspberries would make it yummy for us both. So hopefully next time I write I will have more news. As always, progress takes time but it’s worth it! Have a great week everybody xxx

 
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DNA testing

Posted by Sarah on Oct 26, 2020 in Uncategorized

I saw a conference for the new business I am doing and one of the things that they are joining forces with is a company who do DNA testing to help with what vitamins and supplements are lacking in a person. I’m pretty excited about this as Beth has always been a bit of an unknown in these areas. I know that she has gut issues, really we all do in this family. I get tummy aches even at the thought of going out at night, Beth’s anxieties always present in her tummy as do Bridie’s. It would be great to know what will actually work rather than doing things by trial and error! Here is an excerpt of what I read today which sounds fantastic.

Trait 43: Social & Relational Interactions. we test more than 200 DNA variants. This trait looks at your genetic profile associated with prosocial behaviour, empathy and compassion to others.Relationships are fundamental for the structure and function of society and are a key factor in the well-being of people. Knowing your genetic makeup can direct you to implement certain strategies to develop better social skills.

So far on the omega Q supplement Beth seems to be communicating better. Behaviourally she’s still fixated on Paul and his cough which frustrates the hell out of me. I’ve now taken a hard stance on it and remind her once only that if I hear her being mean to Paul again that her tablet will be taken from her for 24 hours. I have had to do this once which, as you can imagine, made my evening such fun! From crying and begging to her speaking on my behalf. “Yes Beth, of course you can have your tablet back, you’re a good girl!” in a high pitched voice while blubbering. It sounds funny writing it now but at the time it’s awful! But, I’m of the belief that no means no and, while times may sometimes be negotiated, the punishment will not. I know this when I do it and I brace myself for the tantrums. The outcome is however that she knows I’ll follow through with what I’m saying so she does what I saw. Sometimes!

She’s back at work now, 2 days a week. I am happy that we actually got good funding this year through the NDIS so, when the zombie apocalypse eventually ends,we will be getting her back into art and have lined up a cooking school to come out and cook with her once a week. I’m rather looking forward to her cooking dinner on occasion. Though the more likely scenario is daytime cooking thanks to dinner taking second place to Malcolm in the Middle that she simply must watch, despite the fact that we have the whole series on hard drive!

We’re walking the dogs daily and Beth’s doing her personal training once a week too. So all together I’m pretty happy with how things are travelling. I’m going to trial her on a probiotic supplement starting from tomorrow, it’s in powdered form and has the equivalent of a kilo of green veggies in every serve! I’ll let you know how we go, I know a few of you have issues getting all the good stuff into your kids due to various issues.

Have a wonderful week everybody! x

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