little girl with a camera filming a Roblox figure

 

I wanted the kids to spend less time watching You Tube videos so I bought them some new toys, a set of Roblox Figures. They were so excited they grabbed the camera and started doing an un-boxing video. Once that was done Boo began making her own little stories up with the characters and filmed it all. In other words, she was doing exactly the type of thing she watches on You Tube.

I don’t know whether to call it a win or a fail?

After the filming was over she grabbed the laptop and watched her film over and over.

 

Photalife

 

Sunday Snap

 

 

the word procrastination

I’ve used this word before but it was nearly two years ago so I think I’m allowed to use it again.

The weird sad thing is, a lot of the things on the list I put in my last post are still the same.

I like writing lists, it helps me to focus on what needs doing. But sometimes those lists of things to do need doing over and over, so I’m not beating my self up for them being there again.

I wrote a list and put it on the fridge about two weeks ago. The three things on this list that are the same as last time are; clean the girls and little man’s bedrooms and sort out my wardrobe.

Now, please understand that the bedrooms have been cleaned and the wardrobe de-cluttered a few times in the last two years, but they are continuous jobs that need doing, and ones that I don’t relish doing. I have to have help because I can’t pick things up on the floor. Well, maybe one or two things but it hurts. Try it yourself, pick a few things up without bending your knees and see how far you get. It makes you dizzy too!

I’m looking forward to getting the girls room done because we have some new bed linen and toy boxes. The Little Man’s room is fairly tidy (why is it that both my boys are far more tidier than my three girls?) but I want to move things around and fit in some new furniture.

A new job is to re-decorate the family bathroom. I have a new bathroom cabinet a cupboard and new shower curtain. We have paint for the walls, and new bath mats. But, we’ve had these for over a year now and the bathroom still hasn’t been done. I get so frustrated because if I was well I know I could do it all in a day, I’ve done it before. I even decorated the living room in the old house when I was seven months pregnant with Star. But now I can’t do it and I have to wait for hubby….and he’s always got something better to do….and he’s a number one procrastinator.

It Drives Me Nuts!

The kids break up from school today, we seem to be a week behind everyone else in the country. We have a day out planned for Monday, but the rest of the week is going to be spent working through my new list and Procrastination is going to be BANNED in our house.

So, give me two weeks and I will be back telling you of all the things we have achieved. Just you wait and see!

Do you procrastinate?

 

The Reading Residence

 

 

Do you listen to audio books? I have to admit, I didn’t really think it would be something I’d do. Back when I was a librarian, audio books were on cassette and generally borrowed by blind people, I guess that’s why I was reluctant to take the first step.

Then I discovered Audible by Amazon. I joined up with a free trial and downloaded my first audio which was a book of meditations. I’d already completed an online course, The Activation Game, which had a weekly meditation that I’d become used to  listening to in bed on my phone and found it incredibly relaxing. So I was looking for some more meditations to listen to and are plenty to choose from on Audible. To start with I tried this one, Mindfulness for Health by Vidymala Burch.

mindfulness for health cover on audible

I found it really helpful and having it downloaded to my phone meant that I could listen to it in bed. Vidyamala Burch has such a relaxing voice. The good thing about these meditations is that it doesn’t matter if you fall asleep, you can listen again anytime, but it’s job is done if you are relaxed enough to sleep. I have recommended many friends to try these type of meditations to help them sleep, there are so many available.

Recipe Books

Now I have shelves full of recipe books, many of them used over and over and have the stains to prove it. Cooking by ear was a different experience. Yes, you can listen to your recipes while you prepare them, it’s so much easier than flicking the pages or finding a clean spot for your book…or if you are like me trying to put your glasses on to read while your hands are covered in flour or garlic. My first Audible recipe book was a Paleo Diet one. If that’s not your thing there are many more recipe audio books available. Perhaps you’d like to hear how to make something sweet?

make a cake from scratch cake recipes on audible

Fiction

It took a while for me to head into fiction, I like reading books and I didn’t think I would enjoy listening to them so much. However, there are times when listening is really useful, for instance, on the bus or train. I found that reading too long was causing me eye strain, even with my reading glasses. Unfortunately my condition comes with eye problems which cannot be corrected with glasses, so to keep on enjoying my books I had to consider listening to them instead. I’ve found them really comforting during those long hours I spend in hospital receiving my treatment. I’m saving The Girl on the Train by Paula Hawkins for my next session. (If I can wait that is!)

the girl on the train cover on Audible

There is so, so much more available on Audible, autobiographies, non-fiction, children’s books, crime thrillers, sci-fi and educational books.

You can sign up to Audible for a 30 day free trial and after that it’s £7.99 per month. You will get a free download every month you are a  member. You can cancel anytime. Visit the Audible help centre for more information.

If you are a member of Top Cash Back you can get money back for joining, at present they are offering £10 cashback and half price subscription fees for the first three months. (£3.99)

Are audio books something you may be interested in?

Disclosure: this post contains affiliate links

Star is the third eldest of my children and already she has made it through mainstream school the longest. I do wonder though if it will last as we have worries on a weekly basis.

I cannot fault her school, they do so much to help her and never expect too much from her. Only last week they moved her into a different form room because the one she was in was a little too noisy for her. She has teachers she can go to when she’s not coping and rooms to go to when the classroom is too much for her. There are even places she can go to the bathroom away from the rest of the school children. The teachers understand her needs and she misses certain p.e. classes if necessary.

Special Needs

autism, spelt out in blocks

Star has Autism and  Elhers Danlos Syndrome, she also has had major operations and her cervical spine is held together by screws and titanium plates. Star has many extra needs compared to the average twelve year old, but the school helps the best they can. She gets stressed out by noise and crowds, sometimes she cannot handle the dining room and is allowed to sit somewhere quieter to eat. She gets excited about school events, then stressed out when they happen because they are a change of routine.

She has joints that sublux easy which means certain physical activities can cause her pain. And because of her spinal injury she’s not allowed to take part in any contact sport. She gets frequent headaches and has stomach problems which means she often needs medical intervention which the school gives on my permission.

School Trips

Last year her class went on a residential trip. The place they went to was only around 80 miles away from home and Star really wanted to go. But, we had so many issues with both her health and her maturity at being able to cope. The school talked to us extensively about the trip but in the end we decided not to let her go. The school then offered to take her there and bring her home each day so she wouldn’t miss out on the daytime activities but did not have to deal with the overnight ones. It went so well we decided that she could stay the final night.  That didn’t go so well so we know we made the right decision about not letting her stay the whole week. But we are so grateful to the school for being so understanding.

This year the trip is to France for three days and Star really, really wants to go. So much so that she made us pay the deposit straight away. She is a little more mature this year but we still have some issues to work through. The trip is not until June so hopefully we can get those issues sorted, her nurse says it’s possible so we are staying positive. It’s just three days but she won’t be able to come home if she changes her mind. We are going to have many more conversations with the school and with Star before this happens but I really hope that she does get to go, it will be an amazing opportunity for her.

Attendance

So, it’s sounding good isn’t it. The school is great and Star is relatively happy, most days she comes home smiling. She loves her new class and new form tutor, she feels understood.

However, there is a downside to having a disabled child in a mainstream school that cannot be made better. That’s the expectations of attendance. Your child cannot have poor attendance, it looks bad for the school as they have to ensure that your child is attending regularly and achieving their potential.

Star gets sick a lot, she can’t help it, she has medical issues that make her ill. She has subluxations of her joints which mostly heal quickly by themselves but sometimes result in fractures which need further healing. Most the time all that is needed is a tubigrip bandage, but if fractured then she may need a splint or plaster. This means time off for hospital visits.

Star also has stomach issues which cause sickness on a regular basis. She can’t help it but it means she can’t go into school.

Star also suffers migraines. We are not sure why but they could be related to her neck problem. When I say migraine I mean the type where she cannot hold her head up and the pain makes her sick. But she also suffers really bad headaches.

She gets sent home from school a lot because she is not well, but they expect her back in the next day anyway. Her attendance is low, it’s less than the required 96% minimum that the school strive for. The school are on to us all the time if she is off sick, they make us feel like it’s our fault. It’s not down to our parenting, we have two other children at the same school with 100% attendance for the last half term and only slightly less for the term before (Thanks to chicken pox.)

Last week she was particularly poorly. She was poorly all weekend and no better by Monday so we didn’t send her to school. She was still not well on Tuesday but the school had called us a few times and we decided to send her in on Wednesday in the hope that she would ‘perk up.’ The notion is that if you feel a little unwell then you just get on with things and you’ll feel better than moping around. It works for some, but not for Star. She looked awful when she came home. She didn’t want to go back on Thursday but I sent her in because her attendance was so poor. They sent her home before the end of day.

I understand that education is important in mainstream school.

I understand that attendance is vital for good results from school.

I understand that mainstream schools are under pressure for ensuring good attendance.

I just wish there was more understanding for children with complex medical conditions that find attending school unless well really distressing, and will often get worse not better.

Mainstream Failure

Star has told me that the time spent in school last week was spent with her form teacher and mostly sitting in the back of a lower year’s class lessons. Because she wasn’t well and unable to cope with school. So, even though they got their tick on the register of a child attending school, that child was not actually receiving an appropriate education. This just doesn’t seem right to me.

There is no other school suitable for Star, she’s not ‘disabled enough’ to go to a special school, she has no learning difficulties or permanent physical disability.  She would not be accepted, she does not even have an EHCP.

It’s situation that a lot of parents like me find themselves. I consider myself one of the lucky ones because Star’s school is really good for her, but because it’s mainstream they have to comply with the governments standards for attendance. Star will never have adequate attendance because of her conditions. If I send her in unwell, then the school has the extra responsibility of looking after her and she’s still not getting her education. The situation seems ridiculous.

Expectations

A clever child with autism can achieve well in the appropriate educational environment. A parent can have big expectations as their child gets good grades and goes on to college and university. But even this is no guarantee that they will do well in a work situation, or even be able to cope with work. I’ve seen it first hand and it seems such a waste to see that person seemingly wasting their lives away sitting at home all day.

Is it worth it?

I sometimes wonder if it is, but as a parent I will strive to make Star achieves the best she can. I will trust her school to provide her with an education and I will do my best to make sure she is there as often as possible.

 

Is it all worth it, chalked on a school green board surrounded by lots of school items like pens, books, paintbrushes, calculator

 

 

I’m joining in with a brand new linky this week from the lovely Deb over in Sunny Zakynthos  (I’m sure she’ll laugh at that, she’s always saying how it’s not always sunny in Greece. )It’s all about keeping it real and not hiding away behind our keyboards making up life as we wished it to be rather than it is.

A Big Gap

The last week or so has been a difficult one for us with the loss of our cat, Salem. He got sick in December and just before Christmas they were sure it was a tumor. He was ill, but he didn’t seem to get any worse, we were just plodding along accepting that he was now an indoor cat with smelly poos, rather than an outdoor cat that fetched us rats.

We took him to the vets every week for check ups and pills and nothing changed. Then he started to get sicker and it was more noticeable. We decided that the best thing to do would be to let him go rather than see him suffer any more, so that’s what we did. He’s left a huge gap in our family. Everyone loved Salem.

Take Out Night

take out night, a cartoon selection of take out food such as a burger, chips, curry, pizza and a hot dog

 

We decided to have a take-out on Friday evening, that’s always a bit of a nightmare in our house because everyone wants something different. Unless we go to KFC then we just buy the largest bucket they have and a couple of extras. Yes, take outs in our house are very expensive. Anyway, it was not a KFC night Friday, the little ones decided they wanted sausage in batter from the chip shop, then the big ones decided they wanted Pizza. Star changed her mind and wanted pizza too but didn’t want the same as the big ones.

After much debating, the two big ones had a big pizza deal with extras and I bought Star a little individual pizza for herself. Me and Dad decided to have chip shop with the little ones, pizza gives us terrible heartburn. (Deep down we’d fancied an Indian Curry, but we were in the minority and the cost would have been more to buy from a third outlet!)

Dad went to fetch the chip shop food and the pizza was delivered….but, I’d not changed the sauce on the individual pizza and Star wouldn’t eat it. She didn’t like the big kid’s pizza so I ended up giving her my chip shop meal in return for a couple of slices of the big kid’s pizza, while eldest son filled the gap by eating Star’s pizza.

So, this is a little insight to life in the Raisie Bay household. And to think, I always thought that take-outs were there to make life easier!

Pop over and see how everyone else is keeping it real on Deb’s linky by clicking the badge below.

 

 

Debs Random Writings