No ticket!

Ah the summer holidays – rain, wind and more rain. When I was a fresh faced young and childless teacher, I couldn’t grasp why the parents of my delightful charges dreaded the summer holidays.

 

Karma is a funny thing.

 

Owen’s behaviour really took a nose dive in the first week of the holidays. He seems to have developed emotionally which is brilliant but it has come with its challenges.

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He’s started to get a bit jealous of my boyfriend, he expresses his opinions (I LOVE tools) and is missing people and asking to see them.

 

Frustration comes with this and there’s been a lot of cupboard door slamming, head hitting and I’m sure he’s close to shattering windows with the pitch of his scream.

 

I had the specialist health visitor over to see me when I reached the end of my tether last week. I had to wrack my brains to think how I could get Owen to behave. I felt like an idiot – what sort of a primary teacher am I if I can’t get my own son to behave?

 

The health visitor and I thought and came to the agreement that we would catch more bees with honey! I remembered back to when I was a teacher – we would try and ignore negative behaviour and only focus on the good. ‘Catch me being good’ was the phrase we used. Stickers didn’t interest Owen but he loves tickets.

 

So today, I bought four packs of ‘Cars’ trading cards and have dished them out to Owen for anything. He didn’t slam the front door? Have a ticket! He said please? Have a ticket!

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The goal has been ten tickets for a treat. It needs to be easy as anything to get a treat to begin with. It’s been exhausting but much nicer than saying ‘no’ constantly.

 

But it gives me something to use as a threat that I can actually follow through. Owen understands consequences and up until now, I’ve threatened him with things like not going to Grandma’s house or not going to school. Now, I know and he knows that is NEVER going to happen. I need a break! But I also need to be consistent so the threat is now ‘no ticket!’ which is easy to stick to.

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And just look at his overwriting! Each time he practised his name, he was paid a ticket.

 

This afternoon he collected 20 tickets and got a small KitKat for each 10.

 

Only four weeks and 108383838293838382727 tickets handed out to go.

 

 

 

Chessington!

It goes without saying that having a child with a disability can be absolutely shit. The worst feeling in the world ever. An endless stream of appointments and paperwork, battles and sadness.

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Sometimes, it’s absolute bollocks. Today, Owen had such a horrific tantrum because he had broken a coat hanger, that it brought me to tears.

 

However, I have discovered that actually, there can be a lot of perks to having certain pieces of paperwork relating to Owen having Autism. There are charities out there whose sole purpose is to inject a bit of extra joy into the lives of children like Owen.

 

Initially I was reluctant to contact any of them. Owen, in my eyes, just wasn’t ‘bad enough’ and I thought there must be hundreds of other children and families in a worse position than us; more deserving than us.

 

But then, I remembered all the speech therapy sessions, all of the meetings I’ve had to sit through to be told that Owen won’t do x y z. All of the times that I’ve had to decline an invitation somewhere because it’s something that Owen won’t cope with, and I thought, actually, let’s do this.

 

So, I applied to a charity called ‘Merlin’s Magic Wand’, who give tickets to families like ours for Merlin attractions. Chessington, Lego Land, Thorpe Park etc. They were brilliant. It took two weeks to receive confirmation that we had three tickets for Chessington (I chose it for location and because I remembered it being geared more towards little children) for my chosen date.

 

My super boyfriend took the day off from a very busy week and drove us there. Owen LOVES being in the front of his van (and it makes it easier for us to keep him awake!).

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When we arrived, we collected our tickets from a booth. Luckily we didn’t have to queue for too long but this could have ruined the day for any children with Autism who really really really hate queuing. Maybe printable tickets straight to the gate could be an option for them?

 

Again we had to queue for Owen’s ‘fast pass’. He didn’t automatically get one; I still had to prove his disability at guest information. However, he’s now got a photo ID card so if we go again, this shouldn’t take too long.

 

Once the admin was done and we had our pass (10 fast track tokens), it was BRILLIANT! Owen had such a wonderful day. We walked on to rides that had 90 minute queues. Owen, it turns out, is an adrenaline junkie and loved the rollercoaster he went on.

 

There are are plenty of disabled toilets but you do need a radar key for them. We don’t have one and poor Owen had to put up with the hand dryers he’s terrified of.

 

‘Merlin’s Magic Wand’ is definitely worth looking into and I thouroghly recommend Chessington. I’d love to take him to Alton Towers and visit CBeebies land. (Rob wonders if a drunk Mr.Tumble slumped at the bar, signing that he wants another gin is a feature of the hotel).

 

There are days where Owen’s behaviour causes tears. But then there are days, like our Chessington day that the look of pure joy on his face does too.

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And that, I have concluded, is why charities like ‘Merlin’s Magic Wand’, exsist.

Not all who wander…

What a difference a year has made. Today I took Owen to the optician for his annual review. He sees an orthoptist every year at the hospital as well so I’m not entirely sure why this is deemed necessary, but it’s something to do on a Saturday afternoon.

Last year, he sat on my lap in the ‘chair’ and the optician just had to check which way his eyes were moving. Pictured is today’s visit:


He aced his eye test and even threw in a bit of phonics knowledge for good measure. 

Owen is also attempting to write his name which means that everybody is getting cards and letters from him. 

His speech has really developed. Instead of saying ‘Would you like?’, he’s saying ‘Can I have……please?’ and has developed a real sense of what his likes and dislikes are. 


We’re currently getting a lot of ‘I like trains!’, and ‘I like tools!’.

My Dad offered Owen a drink and he asked ‘What is it?’ before making a decision.

He sleeps in his own bed, has learnt to use the toilet and has been on his first fairground rides.

All of these little things add up to a brilliant little boy who is constantly moving forward in his learning and day to day life and is not letting Autism hold him back. 

But he’s started to wander! This can be a huge problem with children with Autism. If they can’t express a need for something (toilet, drink etc) then they’ll take themselves off to get sorted, without the understanding of what getting lost means, or indeed the empathy for the frantic parent!

I was that frantic parent yesterday.

I let go of his hand for a second because the man in the café asked if I wanted my iced coffee blended or not and Owen was gone. He knew exactly where he was going and we found him by the money gobbling £1 machines but it took a good 20 seconds (it felt like 20 hours!) to find him. I think with Owen though, it’s more the stage he’s at developmentally rather than the Autism. He knew why he’d walked off and I don’t think he’d have gone too far.

And as the hipsters / gap-year (yah) travellers like to say, not all who wander are lost.

Unless you’re me and wandering around the downs with the dog. Lost.

Question!

Last week my boyfriend had a vacant look on his face (probably after I’d talked him to the verge of death) and so I asked him what he was thinking about.

 

‘Absolutely nothing’, he replied. Apparently this is something that some people can actually do. Nothing. Zilch. Nada.

 

There is always something going on in my head. Rik Mayall quotes, Rolling Stones songs, shopping lists……I plan things months in advance. On the rare occasion that there’s not something actively going on (other than sawdust), the ‘screensaver’ to my mind will be playing. Currently this is ‘Pen Pineapple Apple Pen’; the Deathnote version.

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One question that worms its way into my mind on occasion is:

What is going to happen to Owen when he’s an adult?

Hand on heart, I try not to think about it. It is one of the few things in life that terrifies me. Along with fire alarms and wasps.

 

Realistically, he could need to live with me until I peg it. On the day of his diagnosis, I was handed a pile of leaflets and paperwork about warden assisted accommodation for adults with Autism and job schemes etc. There are other options out there. He may even be able to live by himself. At his school, there’s a room that has been made into a studio flat, to give the children the opportunity to learn how to make the bed and cook dinner. Important life skills. One of my friends wondered why I had taught Owen to set the washing machine. In my opinion, if I can teach him these life skills now, it’s one more tiny step to an independent adulthood. It’s also jolly handy for when I don’t have a magic kettle to wish for extra arms a la Neil in the Young Ones:

 

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He may never have a full time job. There is a very low number of adults who have an ASD diagnosis who also have full time jobs. I think it could be along the lines of 2 in 10. With cuts in benefits for people with ‘mental’ illnesses happening constantly, it’s another huge worry. Hopefully he will find his calling.

 

 

Who will look after him when I’m gone? I’m sure he will be perfectly capable of looking after himself but who will he have? Programs like ‘the Undateables’ give me some reassurance. He may find love and have a family.
Before I had Owen, I wanted lots of children. Lots of sons – Malcolm in the Middle style.

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I still ache some days for this and I’m very aware that I’m 30 this year. I get broody . I think about what having a brother or sister would mean for Owen when he’s an adult. Someone who would love him as much as I do, someone to keep an eye on him later. On the other hand, I wrestle with the idea that I can’t have another child solely to be there for Owen. I’m not sure I could handle Owen and a baby at the same time and with Owen being six this year, going back to ‘day one’ is a very daunting prospect.

 

But enough with the worrying – I’ll have to up my dose of Omeprazole if I think about it too much. At the rate he is progressing, he’ll be absolutely fine, I’m sure.

 

My boyfriend totally agrees and there’s a reason his mug at my house says ‘Mr Right’ on it…

My survival kit…

If I had £1 for every time I’m asked how I cope with having a child with Autism, I think I’d have enough money for a private concert with the Counterfeit Stones (yes I’d rather that than the real deal).

 

There are things that make it easier. Some of them are not exclusive to being the parent of a child with special needs. We all need alcohol to cope with mother / fatherhood from time to time.

 

1) The afore mentioned alcohol. Fairly self explanatory. Fortunately I have every other weekend child-free to really give my liver a good workout and forget what an EHCP even is.

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2) Make-up. My god, I love it. I could spend every penny I have in Boots. The nights that Owen decides that sleep is for the weak mean that heavy duty concealer is required the next day. My ‘no makeup makeup’ is the most expensive and extensive collection I’ve ever had. I was fairly insulted when  my boyfriend commented that I looked ‘very natural’ then I remembered that it was perhaps the point of the ‘no makeup makeup’  ⬇️

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It takes a lot of makeup to look this natural…

3) A slight attitude problem. I’m a ‘nice’ girl (albeit slightly bizarre). I even won a trophy at high school, purely for being a nice girl. But when it comes to Owen, I’ll tell anyone and everyone to Foxtrot Oscar if need be. I’ve even been known to show people some very special grown-up Makaton signs. Granted, this is something a lot of parents of ‘normal’ children need to be like but the point is that those of us with children with additional needs have to deal with the stares and comments for a lot longer. Yes, my son is perfectly entitled to use the disabled toilets. He is after all, disabled and absolutely terrified of hand dryers.

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4) A large drawer or box. As Al Pacino said in ‘Stella Street’,

‘I need a bookcase to store all of the screenplays that I’m not going to do’.

When Owen was first diagnosed, I had a folder with coloured tabs and a contents. Everything was filed away carefully. Now it gets dumped in a drawer that has ‘OWEN’ written on it in Sharpie. A ‘one pile filing system’ if you like.

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5) Other ‘special Mums’. My ‘mum’ friends are great. You need each other to talk about nappies and later on, schools etc. The thing is, as your child heads off to a totally different school to his pre-school friends, you kind of drift. It gets difficult to talk nappies with someone who hasn’t had to change one for a good couple of years. Mum friends who have children with special needs are amazing. We completely understand each other and a morning with them is a brilliant tonic. (NB – I still have some brilliant ‘normal’ Mum friends for dog walks and coffees).

 

6) Non-Mum friends. Friends who can take you out and remind you that there is a life beyond motherhood. Normally involves alcohol and Fat Man Scoop.

 

7) A general support network. I’m not doing this alone. I have amazing parents, Owen’s dad, his teachers, a wonderfully supportive boyfriend, friends, teachers etc.

 

8) A sense of humour about it all. Having being brought up on a diet of Rik Mayall, Jackie Mason and Rowan Atkinson, I’d like to think I have a fairly robust sense of humour. As I said to my friend yesterday when she was told she’d probably need a cast, if we didn’t laugh, we’d cry.

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NB – if you haven’t seen ‘Stella Street’, look for it on YouTube.

 

Can you see alright? No…that’s why I wear glasses.

I think we’ve had a successful half term. Having Owen at home for a week can be a daunting and somewhat terrifying situation to find onself in but we did it. Ten points to Gryffindor.

 

Owen’s behaviour before half term was not fantastic. (Definitely not a trait inherited from his Mother – Miss ‘0 Detentions and a trophy for being a nice girl 1987’). Everyday when I picked him up, they told me he had been a ‘bit of a monkey’. As a former primary teacher, I know this is top secret code for ‘little shit’.

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This week however, he has been the perfect child. He’s eaten, slept well, played with his toys, his speech disorder has improved, he’s, played with his friends and we’ve even managed to get him completely out of nappies during the daytime. It took a fair amount of bribery and some ‘tough love’ but another ‘great success!’ I’m almost sad that’s it back to school tomorrow. Almost.

 

A huge relief for everybody this week has been his discharge from the eye clinic at the hospital; particularly me because his consultant (who resembles The Master from Doctor Who and is actually rather easy on the eye) is terrifying.

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Three years ago, Owen caught conjunctivitis. It wasn’t so concerning because to me, it was something that loads of children at school get. Easily solved with drops.

 

Owen’s resisted all of the antibiotics and suddenly looked like he had been punched. We raced him to the hospital and we’re told that we had got him there just in time. A few more hours and we could have been looking at meningitis, a stroke, blindness or death.

 

‘Orbital Cellulitis’ is when the nasties from the conjunctivitis get around the back of the eye and the danger is that it then gets to the brain. Fortunately a few nights on IV antibiotics sorted him out but nobody was sure if his eye had been damaged.

 

The good news is that no, it clearly hasn’t! Discharged and no need for glasses or a patch. Another appointment we don’t need to worry about.

 

I wish the same could be said for me. My eyesight gets worse every year (I’ve got my ‘Dame Edna’s on now) and as the big 3-0 approaches, I’m concerned that I’m going to end up with some very Eddie Hitler-esque ones soon…

 

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If it’s got Ben Affleck in it, I’m watching it.

This weekend was a bit of a washout, so my boyfriend and I decided to make the most of our Owen-free weekend (he’s with his Dad every other weekend) and do absolutely nothing but eat and watch films.

 

 

My attempts to get him to watch the latest instalment in the Bridget Jones series with me have been fruitless (so far) and so we stumbled across ‘The Accountant’.  I wasn’t overjoyed about watching another ‘boy film’ but seeing as it started the lovely Ben Affleck, I was willing to give it a try.

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It turns out, that the lead character of this film has (very high functioning) Autism. I normally actively avoid anything along these lines. The Undateables? Nope. Rain Man? No thanks.

 

 

I find them unsettling to watch. I know ‘The Undateables’ is meant to be a heart-warming program, promoting inclusiveness but it’s just not for me anymore. I appreciate that companies such as Channel 4 have done a heck of a lot of good as far as inclusiveness goes. So many people I know enjoyed the program ‘The A word’ as well.

 

‘The Undateables’ is, from what I’ve heard, brilliant for showing the reality of Autism.

 

 

It gets a bit frustrating because a lot of films and television programs portray Autism in a stereotypical way. Generally they go down the ‘genius’ route and everybody hates loud music and can’t have any food that isn’t beige.

 

He’s got Autism but he’s a millionaire because he can card count!

 

He’s got Autism but he managed to hack into the government’s computer files and change the password to ‘govesmells’.

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Oh come on Gove, we all know you stink

 

She’s got Autism but it’s ok! She draws crime scenes from her amazing memory.

 

 

Most of us who have children who have Autism, don’t have prodigies on our hands. We have children who also have issues such as ‘global delay’ and who will probably have to live at home with us forever.

 

 

I stuck with ‘The Accountant’. The flashback scenes to childhood were done very very well. The adult ‘present day’ stuff, despite going down the ‘maths genius’ route, were good too.

 

 

Stimming, echolalia, sensitivity to light and sound, monotonous voice, difficulty reading emotions, a need for routine and order, a need to finish everything and difficulty socialising were all covered. Well worth a watch!

 

 

‘Mercury Rising’ is another film that does a fairly good job of A realistic portrayal of having a child with Autism. Granted, it goes down the old ‘genius’ route again but it does make up for it in other areas.

 

 

Maybe I could make my fortune being an ‘Autism advisor’ to directors?

 

Or maybe I should just teach Owen how to count cards and head for Vegas…

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Or we could just watch ‘Bridget Jones’ Baby’, Mr Davies? 😁

#sorrynotsorry

In the summer, I ventured into the, frankly bizarre, world of Tinder. After a lot of swiping left (apparently I’m rather fussy) and finding matches but not having any conversations evolve from them, I managed to find a couple of people and even a few dates. 

One thing I made sure of was that my profile page stated that I am a Mum. I wasn’t interested in speaking to anybody who had issue with that. (For the record, I completely understand that a Mum is not everybody’s idea of a catch!).

Then came the next part. After chatting for a while, I’d ‘announce’ that my little boy has Autism. I found myself almost wincing as hit the ‘send’ button and awaiting the response. 

I’m so sorry, he has Autism

Often, there would be no response – again, it’s understandable. I did find a few people who didn’t have an issue with it and I’m fortunate enough to have found a lovely man who didn’t  run off when I told him and who is getting to know Owen for who he is, Autism or no Autism.

But it made me think. Why was I so concerned about announcing that Owen has Autism? Why do I apologise? It’s not anything I’m sorry about. He’s Owen and he’s brilliant.

It’s sometimes essential to tell people that Owen has Autism. If he ignores them when they speak to him or is having a bit of a moment, it can be helpful to explain and I always welcome questions. It’s usually met with a ‘well my son/daughter/grandson/etc has Autism too’. 

But from now on, it’ll be a statement, not an apology.

Maybe an apology in the style of Father Jack.

Le singe est dans l’arbre…

I try not to focus on the things that Owen can’t do but in comparison to your ‘neuro-typical’ five year old, there’s quite a list!

Dwelling on it won’t help anybody, least of all Owen himself! So, we had to find out what his strengths are.

One of Owen’s most useful strengths is his memory. It’s exceptional. I think of myself as being somebody with a good memory…it’s how I managed to scrape through my A-Levels and my degree. Now I mainly use it for storing Rik Mayall quotes and Rolling Stones lyrics and for answering bizarre questions in pub quizzes.

Owen’s memory, however, is out of this world. He copies everything he sees and remembers how to do it. He’s a ‘visual’ learner so I’ve taken this strength of his and we’ve run with it.

In two weeks he has learnt how to read 18 high frequency words, just by memorising what they look like. It goes against every single second I spent learning how to teach a child to read. No, we haven’t done many letter sounds or sound buttons etc (S-O-D  TH-A-T) but why not make him feel brilliant about reading? All he wants to do is ‘Words mummy! Words!’ and his face is an absolute picture when he gets them all right.

There’s work to do. I’m writing the 18 words in shaving foam in the bath for him to read so he sees them in different contexts. He’s still a little hesitant if he sees them in his reading books from school (I don’t think I’m ever going to escape Biff, Chip and Kipper am I?). But we’re getting there.

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Who names their child ‘Kipper’?!

Studies show that the reason behind a lot of people with Autism having these incredible visual memories is just because their brains are ‘wired up ‘ slightly differently, allowing them to focus more brain power into their visual learning. Although it does mean less ‘brain power’ in the part of the brain that tells them it’s probably not socially acceptable to walk up to someone and tell them that their hair looks like a massive dog shit

It’s helping him become more independent. He’s learnt how to set the washing machine by watching me. (Although I’m sure I’ve never emptied an entire box of washing powder into the drawer). He mimics everything he sees. And hears. (I’m waiting for him to give another driver the V’s up and exclaim ‘you could fit a bus through there!)

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So glad I got 15% extra free…

It’s like Albert Einstein said – if you judge a fish on its ability to climb a tree, it’ll spend its whole life thinking that it’s stupid. (If it’s on the Internet, it must be true).

Fortunately though, my son is a monkey through and through.

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Sending him back to Monkey World

The ‘C’ word

Owen has started using the C word – no…not ‘see you next Tuesday…..Christmas! He’s currently sporting his Christmas jumper (you try denying a grumpy 5 year old his jumper of choice on a Friday afternoon) and we’ve written a letter to Father Christmas (strike while the iron is hot!).

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It’s the first year that Owen has really understood anything at all about Christmas. It’s one of those things that I had thought would never happen. I’m a big fan of Christmas and one of the things I couldn’t wait to do when I had children was to recreate the magical Christmas days that my brother and I had. That amazing feeling when you open the door to see that ‘he’ has been…and he’s eaten the sausage rolls (no mince pies here thanks), drunk the cider and put chocolates on the tree!

 

 

Owen probably won’t quite ‘get’ it still, but he’s talking about Father Christmas coming and leaving presents under the tree. He keeps telling me that he’s going to put stars on the tree.

 

And who who do I have to thank for Owen’s new found festive enthusiasm?

 

Peppa bloody pig.

 

I *think* there must be a Christmas episode. I’m not usually fully tuned into what’s happening because it’s normally 5am when Peppa is on.

 

Peppa Pig, apparently, has a lot to answer for. I’ve just seen a post on Facebook about some hoaxed American study showing that Peppa Pig ’causes’ Autism. You really couldn’t make that up.  Well, somebody managed to! Someone clearly has more time on their hands than even me.

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Peppa Pig, destroyer of marriages, sanity and causer of Autism

 

But some people actually believe that Peppa Pig has caused their child to have Autism! There are hundreds and hundreds of theories about what causes Autism. It interests me slightly but I don’t worry about it too much – in my view, he has Autism, there isn’t anything I can do about that so I’m just going to help him achieve to his full potential. I don’t think it’s caused by the MMR and I certainly don’t believe it’s because I’m a ‘cold’ mother. Autistic children were once taken away from their ‘cold’ mothers. Horrific!

 

So although I get sick of listening to the same episodes of Peppa Pig over and over again (does baby Alexander ever stop crying?!) and being called ‘Mummy Pig’ isn’t the most flattering of nicknames, I do have them to thank for Owen having a good idea of what’s going on this year (and the occasional bit of peace and quiet) which is a lovely bit of normality for us and will make for a more magical Christmas.

 

Oh shit. He’s asked for drums.

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