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 autism, School holidays

Struggles, day two of school holidays 

Today’s been a long day. 

I feel like I’ve been up all night.

Ok, not all night but most of it! 

Last night Z fell asleep at 7, yup, 7pm, suppose that’s normal for a 4.5 year old, for Z that’s early. We’ve been seeing 10-10.30 and somedays up to 11pm. I knew we were in for an early one, either that or he’d wake at 11 and not go back till 3/4 maybe that would have been better. I was sleeping by 10.30 by 2am we were awake. Not even 3 hours of solid sleep I managed. He went back about 6, I saw the sky turn light and heard the birds wake up. He was back up at 7.15. 

Today he’s been a nightmare. It’s been raining, he’s tried everyway possible to go into the garden, to get to play in the pool. Normally I wouldn’t mind, but today I was tired. It’s wet and actually cold. 

I tried taking him for a walk. He cried, he twisted, he dropped he flopped, he lay on the floor, he tried running away. Yes it’s ok when he was little, I could grab him, now it’s very difficult to grab him and I’m scared it’s going to get worse. Now, he just looks like a big toddler having a paddy, what happens when he gets a little bigger and he drops and flops? To try and keep him safe, I have to try and hold him. I’m guessing tomorrow he’ll have some bruises on his arms, just from me trying to stop him hitting the floor with force, from hurting himself, ironic that trying to keep him safe and not hurt himslef I’ve probably marked him. In the house he would have been left to carry on, outdoors I can’t chance it. There’s cars, bank drops, rivers and forrests. Imagine him running either way into any of those.

He wouldn’t even go play in the park, that’s not like him, after today I’m actually dreading the six weeks holidays. Last years wasn’t too bad, but he wasn’t all day at school either, he hadn’t made any bonds with any teachers, this year he has, when I said ‘car, we’ll go to car’. I had ‘bus, school’. We’re only on Tuesday. I’ll be grey by Friday! 

On the way home, five minutes away from the house he fell asleep, could be the tiredness but also the state he got himself into at the park would have worn him out.  He had five minutes of sleep, at 4, it’s now 9.15pm and he’s still bouncing. More laughing now, but it’s time for bed! 

I have to think positive it’s Wednesday tomorrow, only two more days left after that! We can do it!! 

Posted in autism

Who are disabled toilets for? 

When a child hits four if they are still in nappies then they are entitled to some off the NHS.  

Z is entitled to three a day, yes three, that means he’s allowed say two wees a day and allowed to open his bowels once going on that theory and god forbid you get a stomach bug! 

The only problems with nappies is I have to lay him down to change him. Also with the supermarket nappies they only go to a size 6, meaning that they rub in between his legs. When he was younger after they stopped selling Huggies I tried every nappy from pampers to Aldi, he had a huge reaction to pampers which needed cream off the gp. So we stuck with Tesco.  They started irritating him last year, so we started pull ups. Pull ups at £7 for two packs, 9 in a pack. I change his bum before school. During school he can get changed between 3-4 times. He has a change as soon as he gets home and 1-2 more changes before bed. That’s 7-8 changes a day. That’s £7 for two days, so £21 a week on pull ups. £84 a month. I don’t begrudge paying it he needs it, its one of those things. 
But why do prices go higher the older they get? I was paying £10 for three packets of nappies 36 in a bag, 108 nappies, one pack of nappies would last 4-5 days. See the saving by wearing nappies. But the problem is the nappies don’t go big enough! 

I’ve been offered a size 6 nappy a small adult or a pad to put in underware. Imagine giving these options to an adult, a small nappy, a pad or an xxxl, that’s what in effect they are offering Z. If I put small adult pants on him imagine what he would look like. There’s more choice of sanity towel for a woman than there are of nappies for children older than 3. 

When there’s so many children and young adults needing this service why isn’t there more choice. What disabled people don’t get a choice? Are they not people the same as you and I? Don’t they deserve underwear that fit? 

Why should I have to change Z on the floor of some dirty stinking smelly toilet just because he’s in a nappy? I’m lucky Z can stand, that’s why I choose pull ups. Yes I have to take his bottoms off but id rather that than lay him on a floor.  Again, I could take a mat with me, but then what part of his body gets to lay on that, his head or his bum? 

Every opportunity to take Z out I do, most bum changes take place in the car. But what happens when he gets a little bigger? Where do I change him then?  At the moment I can sit him down and quickly and discreetly put a  pull up a on him. Don’t he deserve that small part of being descret? Just because he’s not talking doesn’t mean he can be treated like a baby and just lay him down anywhere. 

Until I had Z I’m not going to lie I can’t say I thought much of toilets, there’s always been male, female and disabled. But those disabled who are they really for? Now it’s looking at places I know I can change him. Believe it or not there’s only ONE changing places in my area, that shocked me I wasn’t expecting any. There’s not even one in the local leisure centre. Well when they don’t have any parks either what can I expect. Yet Cardiff a city, 30 minutes away only had twelve, and that was including the bay and pennarth.

It’s one of those things that you can get an disabled act, but we really are no closer to accepting disabled people really truth be told. Only this week I was reading about a toy store that had just opened yet there was no lift access to upstairs? 

So big companies if you starting selling things like bigger nappies people would by them. What part of there is no market for them? Please do bigger sizes!! 

Posted in autism

I am me 

There’s a few posts out there saying about how they hate autism. Many are from parents. 

There’s days I can relate, I’m not going to lie it’s not always rainbows and butterflies, ok it’s very rarely rainbows and butterflies it’s mostly thunderstorms and dragons. The lack of sleep, the no speech,the constant game of guess what, the not being able to go somewhere different or a spontaneous evening out, the daily struggles of things so simple like changing a nappy and everything else you can not think of or would think you wouldn’t have to think of but I have to. 

You get days when you hate autism, when you ask yourself why me? Yea why me not why him, wonder why that is? Maybe because he’s happy? Maybe because he doesn’t have any expectations and he is who he is or maybe you’re just going through that pity party for one. That pity party is never just for one there’s always someone in the same place as you. As soon as that stage passes yes there will be others but they will pass. That’s when those days turn into rainbows and butterflies. 

Autism, I don’t hate who or what it makes Z, autism doesn’t make him who he is it’s a part of him. I like to look for the positives there’s always too many posts about the negative side of autism, why, most probably because that’s all you ever get judged on as a parent, oh what he’s nearly 5 still can’t talk and still in nappies, yup, that’s some of the bad side. Yes, he may have one huge tantrum (most likely a meltdown but never saying it’s not a tantrum) as you try walking into the shop but most kids do, autism or not all kids do that at some point. 

So what do I like about autism? 

I like the fact that most parents are complaining about their children playing up, lying, not listening and just generally being children, learning about the world and where they fit in, consequences and cause and effect. I’m not getting any of that with Z! Ok maybe because he’s not talking or maybe the autism is helping him listen. There’s rules and possibly he don’t want to break them. Taking things literal?   He’s learning in his own way, not the way the education department wants him to learn. He listens, as he understands the word no, and I know he knows that word he knows the word no and that when it’s mentioned I mean no, ok don’t think he can rationalise that it’s for a reason but who knows. Same as my when it’s time to go, I say Z shoes he knows he puts shoes on to leave, he listens. I could say it’s all me I’m that amazing parent who knows what she’s doing but you know what nope, that’s not true. That’s on Z he’s learning in his own way finding his own way, learning that his own actions have consequences . 

How clever he is, ok again that could just be him, he could again just follow in his mams footsteps, and yup that’s not on me either! He sees patterns, he notices things that others don’t and he thinks about things, you can just see those little cogs working. 

I’d say I love the fact that he has no fear, but this one he does follow his Mam for that was me as a kid! I’d jump off anything. Maybe that’s an autism thing maybe it’s genetics! 

You see where I’m going with this? Autism doesn’t make Z, Z makes himself. Ok he may struggle with things and hopefully with the correct support in place he’ll learn to not struggle as much, I’d say not struggle but he will always struggle with certain things. 

Z is Z I suppose autism adds something to him but he his him. Not the boy down the road who didn’t speak till 8, not the guy who could give you any day from a date, he’s him. He don’t have any magical powers, oh he has autism what is he clever at? Really?! 

Why does society insist on making people something? He’s the same as the kid down the road the same age, he has ten fingers ten toes, a head, two eyes, yes he has the same as you and I. The only difference is he sees the world a different way, he learns in his own unique way, and that is the part of autism I love. 

Posted in autism

A – Z of autism 2017 

April first, always known as April fools day, now it’s known as autism awareness day, April is autism awareness week or month or both. 

Last year I done my A-Z of Autism                              ( I’ve backlinked after to compare answers!) I’m going to attempt it again to see what’s changed if any.

A: Acceptance – I think people should be accepted for who they are, regardless of disability, gender or colour. The more we teach children now to accept everyone hopefully by the time Z is old enough he’ll be well on his way to being accepted for who he is. 

B: Blogs and or Bloggers – From reading other people’s blogs and chatting to bloggers I’ve learnt loads. No two autistic people are the same. Also that autism families stick together! 

C: Children – I’m lucky I get to take Z on the school bus. I’ve seen a huge progress in regards to children on the bus. He didn’t like sitting next to anyone, he now sits next to a little boy, going and coming home from school, often will just look at one another and smile. To notice children from his class outside of school and smile at them is huge progress.

D: Drums – we were lucky to find a drum tutor that took on Z, has the patience of a saint with him.  When I question after a bad time is it worth it, and he says persevere for a little while! He loves his drums! 

E: Energy – Where Z gets his energy from I dont know! I wouldn’t have that amount if I drank a few cans of red bull. 

F: Food –  Not sure compared to last year how many new foods we have in his diet but I think at least three to five. 

G: Grampa – To see the little bond growing between a grampa and grandson is huge, considering Z wasn’t really too bothered last year he was all nan! 

H: Happy – Something Z is most of the time. We’ve always said what a happy child he is. I’d love to be like him, not have a care in the world and be as happy as he is! 

I: IPad. A huge one! One I’d never be without. It’s taught Z so many things from letters to numbers to colours and shapes. 

J:  Jump – something only very recently Z had learnt to do, jump of something. Yup at 4.5 he would just walk off the settee now he jumps! 

K: kinder eggs – He will watch people opening these on YouTube for ages. He loves to crush them and get the paper out! Will actually say the word egg. 

L: Letters – He loves letters, he’s learning that he can communicate with spelling words which is fab, until it’s becoming an obsession . 

M: Micro Chips – A firm favourite food! 

N: Numbers –  Z is my little maths genius. How he knows his number bonds to hundred, that’s without what ever else he can do that I’ve not seen yet! 

O: Obsessions – Currently these are his numbers and letters. 

P: parents – Meething other parents going through the same sort of things has been great. Yes, my friends and family are fab, but they are not living with autism 24/7 365 days. Parents we can laugh, we can cry but mostly we have each other’s backs. 

Q: Questions –  I still have loads of questions, I’m not sure I’ll ever get all the answers. 

R: Routines – Don’t most children like routines! I’m lucky that Z’s are not strict strict. He needs his routine, we suffer more in holiday time than term time. But we can still struggle during the week. 

S: Spelling – Z is amazing at spelling. The more words he spells, the more he’s attempting to say them. His speech is coming on great! 

T: Teachers –  Without these he wouldn’t be doing things now, each and everyone of them need a huge shout out! Obviously I can’t name them ( and I’m pretty certain they don’t even know about this!) but they have been amazing. I know I can ask them anything, and if Z wasn’t happy he wouldn’t cry coming out he would be crying going in! 

U: Understanding –  This can be taken for both Z and people. I’m finding a lot more people seem to understand the struggles. For Z his understanding is getting much better. 

V: vocabulary – Z’s vocabulary is extensive! We recently saw a pig, it was very big. He said pig, then with all the words on his iPad he got the word Gargantuan up!  

W: Waking – Z still don’t sleep all night, most nights we see 2am and will go back at 5.45. Yes it’s harsh when the alarm is going off at 7! 

X: Xylophone – One word he spelt, that’s when I knew he could spell anything! 

Y: You Tube –  He can get you tube on anything, he knows what he wants and how to find it! 

Z: Z –  Of course it’s going to be Z for Z, he will always be Z and I’ll always love him for being Z. 

Posted in autism

Confiscating letters 

I worried when Z stopped playing with his numbers and letters, more for the fact of was it a regression. 

When he showed an interest in spelling words and trying really hard to say those words I encouraged him. I didn’t put them away as the first thing he would do is pull them back out. 

We’ve been struggling with bed for ages and even getting him up the stairs. The last few weeks he’s been taking his iPad and falling asleep. If this works he can take it. 

What we’ve found is he has to finish spelling a word before he’ll do anything else, that’s the first thing he’ll do in the morning to the point of not eating his breakfast and taking his smoothie with him. All because he needed to spell words. It was becoming a little obsessive.

This week we’ve had trouble every morning, I took the approach of let him finish what he’s spelling but he’ll quickly start another. G took the approach of grabbing him to dress him this made him kick and scream and everyone shouting at one another and all leaving the house stressed. 

After speaking to the class teacher she said he had been having a few problems in school and they’ve had to take letters off him as he’s refusing to do things, more to the point of not wanting to leave the letters. 

So yesterday all his numbers and letters were put away. He looked everywhere and I’m sure said number to me. This morning they were not there. He sat with his iPad and ate his toast and drank his smoothie, he got dressed fine and we all left the house not stressed. He’d even had a better day at school. He came home and for the first time in what feels like forever he played in his sensory room, he played the drums and with toys. 

I’ll speak to aba therapist tomorrow as she’s said not to take them all let him keep his favourites but he don’t have favourites! I’m sure the letters cut out from a newspaper would be fine. 

He can have them at nans tomorrow, and on Saturday they can come out for an hour or two, be put away and the same will be done Sunday. 

I’m not taking them off him completely but restricting the time like others do with computers! 

I feel really bad as he does love them. But as he is with his iPad if they are not there hes not too bothered. Hopefully he’ll remember he has other things to play with and he won’t be so obsessive with them.  

Posted in autism, progress

Chick chick chicken lay a little ……

Another hearing test today, after the one a few weeks back when he failed miserably by trying to fall asleep on the floor, and just cried. Ok, the night after he was in a&e and admitted with cellulitis it was possibly a good reason to not want to do anything! 

Whilst we were waiting to go in today, Z was ‘reading’ a bob the builder book! He was saying bob, and kitten, I asked where’s the cat, I don’t know the cats name,he looked at me in disgust as if to say you know nothing it’s a kitten! ( I’m still pretty certain it’s a cat!) so bobs cat was called a kitten. We had lots of words including door. I’m guessing he wanted it open. When we went in the Doctor couldn’t believe the change in him straight away. He went to get a toy I called him back and he looked at the doctor and said ‘get it’, she actually understood him. He took her by the hand and got the toy. Every time he handed her one he heard the sound go off, that was coincidence and he kept looking at the toy as if to say how do you get it to make a noise! He passed his hearing test and was discharged. 

Dropped him back off to school. When I collected him, Miss came out and said he had said ‘egg’, in my house he normally gets a kinder egg. In school he spelt it, and said it. So Miss said they had been singing chick chick chicken lay a little egg for me, everytime they stopped after little Z would say egg. We tried this on the bus and he done it. He won’t do it again tonight. 

But for the last hour he’s spelt bed, and tired. Looks at me and says tired, this last few nights he’s not been going till 9.30-10 as he’s screaming and expecting us all to go the same time. So we’ve played that one out, I’m happy going to bed at 9.30. Tonight he went up at 7.50, he’s still awake I can hear him but he didn’t go up kicking and screaming. 

It’s nice to see that it’s not only I or close family seeing progress in Z. He really is making lots of progress!