Posted in autism, Toilet training

Nhs Nappies. 

Before anyone starts this isn’t a pop at the NHS, I think that giving disabled people free nappies is something that they don’t have to do, but as the service is there there shouldn’t be any discrimination into any disability, and I feel there is.

Z is 4.5, non verbal and still in nappies, well pull-ups. Why pull ups? Because the shops don’t sell bigger nappies. Size 6 nappies were getting too small, they were rubbing inbetween his legs making it uncomfortable to walk never mind run, and run is what he loves to do. What’s next when the shop size no longer fits? 

That’s where the NHS comes in, any disabled child ages 4 and over are entitled to 3 nappies a day, yes 3 is laughable but I’m guessing that’s another post one day if I ever get my pull ups. 

I said I didn’t want nappies, why? Well because it’s a size 6, or an extra small adult, or a pad. I’ve just saidsize 6  no longer fit him, and I’m prepared to save the NHS money by buying size 6 nappies myself, and the extra small adult are far too big, and a pad? As a woman who has a period once a month who has to wear a pad for 3-4 days and at day 3 can’t wait to say goodbye to it for the next four weeks, there’s no way that  one that Z would tolerate a pad in his pants, two how uncomfortable would that be Day in day out and three how is that ever going to help toilet train him? At least pull ups he’s learning to pull up his ‘pants’. 

Again I was asked do I get NHS nappies this time during the peads appointment, I said no explained that I wanted pull-ups but was advised they didn’t do them, yet know others have those pull ups. So a phone call was made, was advised that I could purchase pull ups at cost price, so yes they do do pull ups, which I knew anyways. 

Now fast forward a few months later. Z’s doctor agrees with pull ups for his age, continence team say no. 

Now I’m ready to fight. 

The pull up that currently fits Z, the nappy the NHS wants me to put on Z, and a pair of Xs men’s boxers. 

See the difference in size here? 

The nappy will come up to Z’s chest. Now we all know what happens when he wee’s, the nappy holds it, yes now he’s got a wet belly. Or, the nappy now being heavy falls down, again, between his legs and we’re back to square one of rubbing his legs and not being able to run. 

Now if I sent him into school with those pants on, wonder what would happen ? I’m sure there would be a note home saying something along the lines of please get clothing to fit Z! Why are using adult nappies different? 

What if the shoe was on the other foot and a disabled adult had to squeeze into a xl children’s nappy, you think that would be ok? Nah, something would be done. So why are children being pushed aside. Forgotten? Or is it that disabled children don’t have a say? They are still children, they still deserve dignity. 

Why are pull ups not given out as well as nappies. I’m fortunate Z can stand, I whip of his bottoms and on goes the pull up,  discreetly.  I hate laying him down to change his bum. On a stinking dirty pee stained floor. Would anybody in their right mind just go an lay on a public toilet floor? Why should I do that to my son? What because he can’t talk and tell me the floor is dirty it’s ok? 

So tomorrow I have a meeting with a lady from continence team this isn’t about me wanting what no one else got these products are avaible, maybe not local but the NHS is the NHS. Why should any child be left out? 

Posted in autism, school

 A letter to Z’s teachers 

Eleven months, thirty eight weeks, one hundred and ninety days, one thousand three hundred and thirty hours that’s how long you’ve watched Z and roughly six hundred nappy changes! 

Not long left, twenty days and counting! 

I know if he could talk he would say ‘Thank you’. 

As he can’t say it I’m saying it for him. 

Last September Z started full time, of course I was nervous, I was giving you my wild child for all them hours. My child who’s still in nappies and who doesn’t say a word about his day, to a school I didn’t really know much about. Yes, he’d been part time for nine months but he hadn’t really bonded with any adult in the room, so full time was going to be completely different. I was nervous, not knowing who the teacher was, as I said I didn’t know enough about the school or staff to not be worried. I was just handing over my giant baby to be looked after 9-3 when knowing if anything was wrong he wouldn’t be able to tell me. 

But I needn’t have been worried. To see Z progress in a few short weeks was amazing, first parents evening not long after he started you were all pleased with his progress, he had kind of grown up over the holidays, he was ready for school. 

Days went to weeks, weeks to months and I could see the way he’d look at you all, with love. Easter, when we had a Bonnet day, was when I noticed the bond he had with you all, he’s comfortable, he smiles, he laughs and  he listens. He’s treated with love and affection, school really is his second home. There’s no way he could react like that on a one off which shows me that’s how he gets treated every day. Some parents may get jealous, I’m not one of those parents I’m thankful that he’s found others that he’s comfortable around. Others that can love him like I do. 

When he started saying names at home the smile would go right to his eyes, ok, when the one name was mentioned he would grin and go all shy, he missed you all as those Easter holidays showed me when all I had was teacher, bus and school over and over again. First day back and he couldn’t wait to get back to school. People say oh it’s the routine the reassurance of the building. No it’s the people who look after him. 

I’ve enjoyed getting to know you all from those five minutes of what he’s been up to at the end of the day to ‘grwp’, this has been great, not only for the help and an insight of how you manage him but to see the work you all do every day. He’s not easy to manage, he can run, and quick! But you try and keep trying, and that I appreciate. Yes it’s your job, yes you get paid, but not enough in my opinion, every morning you have smiles as you take him into class and every afternoon you bring him out laughing. You’ll answer or find answers to any questions I throw your way! You treat the children as one of your own and for that the children not only Z, love and respect you for it. 

So thank you, thank you for watching my son this past year, thank you for taking care of him, thank you for working so hard with him to master new skills, but most of all thank you for making his first year at school fun. It must be fun for him to want to come back every day. 

I know in twenty days he’ll be saying goodbye to you guys, I know he’ll be happy with his new class, teachers he most probably already knows them. Bet he’s  picked out who’s going to be his tickler and who he’s going to try and wrap around his little finger! It’s the parents who have to adjust, it’s like going back to the realisation that portage stops, and you’re on your own! 

Next year as much as I’ll worry about him going back I’m guessing every parent does, I know he’s safe, but it won’t be his first year again! He’s used to the school, the faces and the routine. It’s just another new chapter in our never ending story! 

Posted in school

Sports day. 

Second year for Z to attend sports day and again I think he loved it! 

Of course still being little they don’t run races, imagine trying to get his class to run a race?! Not going to happen! 

Started off with some soft play, tunnels, balancing disks, hoops, but Z just liked the freedom to run. 

Next up was the skittles, balls  and balloons. All Z was interested  in was the ball pit! Me throwing balls at him and he was saying the colours! 

Next was his fave the parachute, he loved it. To see his face light up and hear him giggle, when those balls were being flung up. Of course he had to get on and lie on it! 

Yes outfit change halfway through! 

All the staff and children worked really hard, not sure who enjoyed it more! Looking back at some of the photos I took today if I hadn’t already written my next post it would have made me start to write one! 

It has to be hard to put together a sports day when you have so many children, children who can’t run being one main one, yet every child was involved, that’s where the parachute and balls and balloons come in to it, sensory. 

Some may think it’s just a ‘fun’ sports day, but the children get lots out of the sensory side, never mind the social, and one thing no one would even think of is the transistions. From going from one sport to the next really is quite difficult for most of these children, they all coped so well. 

So thank you teachers for putting on something that most parents would take for granted when a child goes to school. 

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 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!