Posted in A's view of the world, A's view of the world

It’s my 13th birthday! 

Last week was very busy because my birthday was on the 9th June so I was still being asked what I wanted. 

 I only had 7 things on my list this year because I couldn’t really think of what I wanted, so I decided on a few books and phone things.                                                                    

I was really excited because on my birthday my mam and sister were taking me to mystery rooms in Merthyr with my best friend. On my actual birthday I was given loads of presents such as jewellery, books, pillows, cuddly toys and more. The dining room was full of pretty cards and I had a cute tatty teddy cake with big sparklers which I was a bit scared of!!


 My mam and dad even got me 3 big pink balloons which I loved to play with so this year I was spoilt again. 

The best part was birthday breakfast because there was pastries, bacon, cereal and loads more tasty things. 

 At 4.20 me, my mam and sister picked up my best friend and went straight to the mystery rooms. Inside the mystery rooms there were lots of clues which some were easy but some were hard. It is a great gift for someone who likes being locked in rooms and timed!! 

When we went back home we had Pizza Hut and me and my best friend played games. I really enjoyed my birthday this year and I had so much fun. 

Posted in Death, friends

When time runs out.

Social media. It good for keeping in touch but also crap for stopping and talking, for meeting up and catching up.

Time hop, it’s great for reminding of those baby pictures or those drunken nights out. Not so good for showing dead people and those memories that goes with it. 

When you get a call to say someone has died, normally it’s  oh how sad, how did it happen? And that’s it, you go on with your day not thinking about said person again. 

This time it’s different and I can’t even begin to explain why. 

It’s not as if it was a best mate, not someone I worked with not someone I socialised with, not someone I spoke to every week, or month so why is this one any different to other people who have died that I have known? 

Ok, for over a year I sat at least once maybe twice a week with this person for 2 hours or so at a time so 4 hours a week. Again, that’s hardly anything. But during this time we chatted more importantly during these times we laughed she had the most loudest infectious laugh! We as the adults had playdough competitions, drank coffee and talked of Christmas nights out.

September came and Z was struggling so I went each week until half term when I couldn’t see Z struggle any longer. Before then there were just a small number of us, She spoilt Z, she opened more playdough and put them on her fingers to sing finger family, she let him have the pen tops, she bought him numbers so he felt at home, she let him play downstairs, she done everything she could to make Z’s time there happy. She included him in trips and often sent a message. 

Where am I going with this? In all honesty I don’t know. I do know it’s knocked me for six. I could say it’s her age? She wasn’t that much older than I? It could be the fact that I’m getting older and I’m worried for Z If anything happens? 

What I really think it is is that could have been any number of my mates. Mates who I don’t speak to for months, not because anything has gone wrong but because we don’t have time any more. No one makes time for anyone. Often at 3am I think to myself, oh, I’ve not seen X, Y and Z for ages, I must txt them see how they are. A txt? What happened to the phone calls? The let’s meet up for a coffee or even town for a drink? 

Then time hop pops a picture up, one that you want to reshare and tag that person in again, with the caption, ‘remember this?! ‘ then you have a small conversation saying oh we have to meet up, that meet up never happens. 

Then that chance is gone. Taken away from you. Something you can never get back.

Next week friends who I’ve not seen for ages will get a call off me I’m going to go out on the last day of term. There won’t be a  this group or that group it will be one big group of friends. Never know I may even turn up at houses for a coffee.

If you take anything away from this post please ring a friend you’ve not spoken to in a while, arrange a catch up and go and have a laugh as you never know what’s around the corner. 
R.I.P T 

Posted in autism

I didn’t choose this way of life 

I’ve just read a book. About a family with an autistic son. Who have to go to court to get him a place at a boarding school, as they feel that the local school can’t meet his needs. What the books wants you to read and take away is autism tore that family apart. No, autism didn’t you as parents did. 

As a mother of a child with autism, who at 4.5 is still preverbal and in nappies there are not any days that go by without me thinking of Z’s future. When discussing schools I was told don’t look to the future look at now. I couldn’t do that, not for me but for Z. What if I looked at the now and said oh well he’s not that much different from the others, they’ll still have accidents, they can’t read and write let’s send him to preschool. Oh I’d be in a completely different place right now. 

As it is I don’t have a crystal ball I don’t know what’s coming next, sometimes I really wish I did but then knowing if he’d never talk or come out of nappies would that be a good thing? Don’t holfing out for hope help? 

I do know for one thing I’d never give Z away, ok sometimes the idea of handing him over is well an idea as I’d never do it. My argument is I wanted him, I may have not wanted the autism that comes alongside with it but who does, so he’s mine to look after. Sometimes he’s challenging, and yes it can be embarrassing when out in public, but he’s still mine and I still wouldn’t give him away. 

What’s that teaching him? That’s he’s broken? That he’s not worth my attention? That because he’s challenging I don’t want him? That he’s not what society call normal so I’ll send him away? 

In this book the kid went to a school with green grass, forrests, a pool and horse riding only about 50 kids and 200 staff, but those staff are not his parents.  I’d rather spend that money that went to fight for him to buy a house in the countryside and buy him a horse, and build a pool. Even if it meant employing a few teachers! 

I’m lucky at the moment Z doesn’t smear, if he done that well then I don’t know how I’d manage, I still prefer poo over snobs any day! But I’d still like to think that I’d never want to get rid of him. 

It’s hard enough that he can’t tell me what’s happening in school, I trust them 100% I suppose you have to trust the person who’s watching the most precious thing to you if you didn’t then there would be no school! I take him I pick him up, some might say well that’s because you’re the bus driver, if I wasn’t I would take him in the car and collect him in the car, I think the parent / teacher rapport is so important, imagine boarding school when you only saw them during holidays. I also understand that for some it’s not possible to be at two schools at the same time. So what may work for me won’t be what works for others.

Not sure where I’m heading with this, it’s late and I’m tired, but that’s what having children does to you, they make you work 24 hours a day 7 days a week, there are no holidays . That’s the choice you make when you decide you want children. 

When I decided I wanted children I always said I was going to go places, see places, do things. Yes, I’m not going to lie autism chucked a spanner in that work but we adapt, we have to adapt. It’s hard always looking for things that maybe other parents take for granted. But I do it, because I wanted him, 

I’d say autism may cause arguments and it may put the husband in the spare room! But again I’d say that’s just a child thing anyways. 

I do know for certain that having a child with autism has taught me much more than I would have ever expected. Now I appreciate those small things that others take for granted, from listening to a simple instruction to copying a movement. 

It doesn’t stop me worrying about Z’s future I think all parents do, I can put him in boarding school till 19 then what happens I’m not going to have any idea how to care for a 19 year old. As it is I’ll take each day as it comes and I’ll fight each battle when I have to.  

Posted in A's view of the world, A's view of the world

Holiday in Cornwall

On the 13th May I went to Cornwall with my mam, dad and nan for a week’s holiday. I didn’t really enjoy the journey over because we had lots of bags and it took 4 hours. When we got there we had a look at the house and chose bedrooms, then we went to the clubhouse and had a warm drink. I decided to sleep in a twin room upstairs and sort out my things. On the Sunday we played crazy golf which was really fun because we couldn’t even get the golf ball in a hole. After crazy golf I bought some presents from the shop and then got ready to go to dinner. I really enjoyed dinner and after that we went shopping in Asda. On the Monday we just drove around because it was raining really bad and the same with Tuesday. On the Wednesday we went to Lands End and had fun taking photos and looking in the gift shop. In Lands End there was a 4D dinosaur experience and a King Arthur experience which was full of different pictures and mini quests to escape. My favourite bit of Lands End was The Shaun the sheep experience which showed you how to draw the characters and how they are made for each episode and movie. Then we took a picture with shaun the sheep and nan got me a cuddly toy. Then we went back home and had yummy chips which I loved and I finished sorting out my presents. On the Thursday we went to Flambards and took some photos of statues and of course trees for me to draw. I learnt a bit more at Flambards and enjoyed looking at all the models and gardens. I was lucky enough to go to the gift shop and pick up 3 small unicorns and some more gifts for family. When we got back at the house we played a bit of crazy golf and some card games. Come Friday it was a super nice day but I didn’t want to go anywhere so we played cards and golf then packed our bags to go home. On Saturday we left the holiday site and went back home which was great for me!


 

Posted in school

33 days. 

That’s how long Z has in school, ( obviously not counting weekends) this time last year I was counting down how many mornings I had left with him, to keep him all to myself with out sharing him all day. Now it’s panic in what are we going to get up to with six weeks to kill?! 

The next 33 school days are going to fly. Still don’t know who Z will have next year as his teacher, I’m sure this year they’ll know before September?! This is the eeekk moment for me as his Mam. If he was at mainstream you’d know who the next teacher was, and you’d either be glad or terrified! With Z no one knows, as they all move around and most children go on transport you don’t even have the ‘oh I know that teacher, or I like that teacher heard good things, like you would in mainstream. I have nothing to go on! Maybe after him being there a few years I’ll get to know teachers but with so many I don’t think that’ll happen. 

I’m lucky I pick him up everyday so would maybe recognise the new teacher, but then this is me I’m talking about so chances are I wouldn’t recognise the teacher come September anyways!! His teacher could live a few doors down that I’d see in passing, but put that person in the class room and I’d think oh I know that person but it would take me ages to think where from, yea I’m pretty rubbish at things like that! I really would walk past anyone in the street, or shopping as I wouldn’t expect them to be at that place so I don’t recognise them! 

What happens if  Z don’t like his new teacher or class or even classmates? He can’t tell me, how would he react? I’m sure he would be fine, but it doesn’t stop a parent worrying. If he could talk and tell me then I could say oh don’t be silly, teacher is lovely! But of course I can’t say any of that if he can’t tell me! Obviously my biggest concern is any sort of regression, he’s come so far with the teachers he has and I know I’ve been told that he would have met his new teacher and worked with them for ages so won’t be phased at all.

So 33 days, wonder how much more he can learn in 33 days? If only they could teach him to sleep!  

Posted in School holidays

June…

June already, wow when did that sneak up on us? 

Next month is last month in school, then it’ll be Christmas already. Then I’ll have a five year old, I’m so not ready! I would say can we pause time in the six weeks holdiay, but then again I don’t know how well that will go! 

This week we’re on school holidays, Monday wasn’t too bad, as it’s bank holiday we didn’t actually take Z anywhere, they are always too busy, plus the weather was a little crappy. He fell asleep at 7pm Monday night, yup, we were up at 2am Tuesday was a long day. 

Wednesday mid week, and we headed to Barry, was nice to get out and get some fresh air, even better that the sun came out. We went for a walk, worked on our hand to eye co-ordination in the amusements, went to the fair, we ate ice cream and stopped at the park for a quick run about. 


It’s always nice to join B & B being in the same situation it’s nice that Z isn’t the only one in a buggy, feeling like we can’t join in with some things as it’s too difficult. Like yesterday we didn’t attempt the beach with the buggies, Aberavon is where we go to play in the sea, it’s closer the car! 

So June, wonder what you have in store for us? May had lots of new words, cheeky grins and a few adventures!