12 years

12 years ago after the birth of my second son I had a breakdown. It was the worst experience of my life. I had severe post natal depression and peri-natal OCD. Peri-natal OCD is possibly the cruelest form of a mental health problem I’ve come across. This isn’t lining baby bottles up or being tidy. This is trying to make a bottle and convince yourself that you haven’t filled it with salt (obvs haven’t but you check, you check again, one more check, you throw away – just in case, you start again). It’s exhausting. You have this teeny human to care for and all you can think about is the harm that they could come to (obsession) and spend your life making sure that doesn’t happen (compulsions).

This is not a combination I would wish upon anyone, not my worst enemy. I couldn’t travel alone on a bus into Newcastle, couldn’t nip to the shops or take my oldest to school. On the rare occasions I did venture outside I wouldn’t/couldn’t speak to anyone. It was the darkest place I’ve ever been to. I ended up moving home with my parents, only they knew the true extent to how bad I actually was, taking sleeping tablets 6 nights a week for some respite from my inner turmoil while anti depressants settles themselves in as my new sidekicks (still with me, couldn’t live without them). I could no longer work in finance and found myself with no job for the first time in my life. I felt I was a failure and the world would be a better place without me.

If you’d said to me then Christine hang on in there. You are going to make a difference. You’ll play a part in saving lives through the charity. You’ll produce theatre shows and a film. I’d have christened you barmier than I was. But look what’s happened! Granted I still take meds – no shame in that, I practise mindfulness and really try to keep on top of my mental health.

When I talk about being driven you have no idea how much I’m driven. I see these opportunities as second chances. I see them as my way to cover up some of the cracks in my own walls. Being driven fuelled with anxiety on most days is bloody hard. I hate anxiety, sometimes I want to get the kids off to school and then hide but I don’t I sometimes need some encouragement to keep it moving and I do my absolute best.

The Life of Reilly is cathartic for me. I love writing when I get the chance. I love to share our experiences and feel I’ve evolved over the last 3 years of writing. I hadn’t a clue when I wrote my first blog that it would be viewed all over the world. I get thanks from countries I’ve never heard of because they feel like they aren’t the only ones ballsing this parenting lark. I get it wrong. We all do but I do my best.

I will do everything in my power to ensure that the stage play travels. I will work my nuts off to make this film. Wherever possible it will include autistic people. Acting, crew, runners. Everything in my power to make it happen. There are important issues to raise and millions to educate but I need your help to do it.

If you can help with any aspect of the film be it donation of time, sponsorship, product placement, locations, expertise then please shout. We have some great fundraisers coming your way including a Midsummer Nights Dream Ball!!

Moral to this one is no matter how shitty you feel there is hope on the horizon. Keep your chin up, seek help, take the meds, speak to the counsellors just do what you’ve got to do when times are blue. Never be afraid to speak up.

Great things could be just around the corner xx

https://www.crowdfunder.co.uk/the-life-of-reilly-film

Shear(er) delight!

Recently I had the absolute pleasure of attending the Alan Shearer Centre with local group SPARCS. I’d never been before but Reilly is a regular and has attended many times with school to use the hydrotherapy pool.

Its fully accessible for those with limited mobility and located just off the A69 its set in over an acre of beautiful grounds complete with woodland walk, sensory garden and specially adapted play area.  A hidden gem.  Plenty of seats and perfectly kept lawns for those budding number 9’s to have a kick about.

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Inside there is so much to do.  The ladies on the reception were incredibly helpful and enrolling Reilly as a member took all of 2 minutes, membership and use of the centre is FREE.

Reilly loves all the sensory activities the centre has to offer and was very welcome for a cool down on an incredibly hot day.  I love watching these incredible kids at play.  Fascinated, focused and happy. I also love watching parents, grandparents and carers being able to relax, without judgement in a place they feel very welcome.

 

 

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While there I arranged for Reilly to visit the hydrotherapy pool in the summer holidays.  It can be booked for sole use in hour sessions which is perfect for and the general public who don’t need to be subjected to me in my cozzy.  We’ve chosen to share that date with Kelly and her little one, Kelly is one of the fab parents I met when talking about Reilly’s blog at a coffee morning earlier in the year.  I always get so stressed about keeping Reilly happy in the holidays,  I see a lot of time being spent here in the summer, even a cafe so no need for soggy sandwiches and warm pop.

 

It is well worth checking out SPARCS who run meet ups for autistic families at some excellent places around the North East and of course The Alan Shearer Centre and all they have to offer.  As well as the activity centre they have The Alan Shearer Short Break Centre and The Specialist Residential Home.

Check it out and if you see us there make sure you say hi!

x

 

Helpful holidays

Today’s musings. I’m so nosey when I’m on holiday. I’m always watching other families and how they interact, I’ve also spoken to quite a few other parents of autistic kids. We all have the same struggles. Why not just get a villa? I have a ten year old who loves making friends, getting ready for the ‘night time’, playing footy. And I’m a people person. I like talking to complete strangers and walk away content that I know where they are from and what they’ve had for their tea. I also want Reilly to be around others, it’s life. People won’t disappear as he gets older there’ll be more need for interaction. And most importantly I am not cooking on holiday. There are many millionaires in this world, billionaires in fact. I would really like it if one of them or even a double dragon would create a disability friendly resort.

Not just autism, any disability. Accessible toilets, parks, water parks. Rooms designed with people of a disability or different ability in mind. Here’s what would work for me if anyone would like to give Peter Jones and Deborah Meaden a nudge.

1 month prior to departing hotel to send pictures of the resort, not the ones an estate agent would use, the nitty gritty. How big the dining room is, what the air conditioner looks like, what type of toilet flush and shower head. What the beds looks like. You get the idea.

On arrival at said airport. Resort needs to be near airport no more than 30 mins drive. Accessible bus. No collapsing buggies or not being able to board with a wheelchair.

The rooms should have balconies that tall you couldn’t climb over but can still see out. They should have a means to lock the door or gate it from the inside. Everyone fears the child waking in the night and doing a runner. Rooms should be soundproofed too. Bathrooms again fully accessible. TVs should always have Disney kids channels available 24/7. Autism doesn’t sleep, neither do we. Hearing loops, signed welcome meetings, Braille hotel guides. You get the picture.

Specialised medical equipment that is bulky and essential should be available for hire without a charge and sterilising facilities available. Nappy store in every size and variety.

Dining room should be loaded with Nutella and sliced bread 24/7 😂 this is possibly one of the most important factors for us. Times should not be strict around dining. There should always be chips, chicken nuggets and drinks available at ALL times. Plastic plates to stop the clattering. Food could be packed into takeaway cartons and taken to the rooms. PECS visuals.

Entertainment should not be as loud and god forbid I even say it but children should be able to dance on the stage!! A playroom available at all times again 24/7 not just 1-3 and 5-7 for the kids who don’t like gangnam style.

DVD players in all rooms and a selection on DVDs available from reception.

The hotel should have direct access to the beach with walkways provided for wheelchairs, buggies etc. All parents should have walker talkies to summon bar service so you don’t have to disrupt said child.

I could go on. Maybe a petting zoo and a couple of accessible rides. Staff trained in special and medical needs would help enormously.

I’m waiting …….. until I win the lottery we’re relying on you Peter Jones. If you build it they will come 😬

Meltdown matters

Ive talked about meltdowns before but just to make sure you fully understand and get it I thought I’d be a bit more descriptive so here goes mainly because tonight has been shit and difficult.

This would be a typical visit to the shopping centre and I cough unexpectedly for example while he’s pre-meltstrual.

Stage 1 – Pre-meltstrual  

This is bit where Reilly is just starting to show signs he’s not happy.  He becomes disinterested in EVERYTHING and growls at me and others.

Must be watched carefully for knocking things of shelves can’t afford to start bartering over breakages got to move fast.

Stage 2 – Can’t touch this

As if by magic he turns into a slippery little eel and its near impossible to keep hold of his hand, hood, arm, trousers etc.  For his own safety obviously you must hang on like a rodeo cowboy, he will run in front of cars, people, get on a bus (this has happened) and I usually drop bags, money, bank cards etc in the process.  My temperature raises by a couple of degrees and I need to get my coat off.  I have said in my head FFS a few times already.

Stage 3 – Puppet on a string

Trying to transport a child from A – B when their legs aren’t working is hard.  Especially now you’ve added your coat  to the list of things you are carrying.  It’s like someones put a Tom and Jerry magnet in his pocket and its attracted to the floor.

I take this opportunity for a breather and stand over him like the Colossus of Rhodes.  It’s at this point I will notice the first stream of tutters, judgmental bastards who’ve never done anything wrong in their lives nor have their kids or grandkids.  Angels.  They sweep past watching you over their shoulder while discussing with their friend how shit you must be as a mother. Up yours.

Stage 4 – Shaddap your face

Reilly can’t talk as you know but I bet he could smash a glass with his wailing – like a banshee.  Red faced, snotty and sweaty still on the floor.   Queue more admiring glances from passers by with the odd ‘smack his arse” comment just audible above the racket.  These people sometimes get shown the middle finger or quite simply told to fuck off or I will smack you.  I’m usually on the verge of a panic attack by this point.

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Stage 5 – I can’t stand up for falling down

Ive accepted that we cannot stand here all day, i’ve mastered my bitch face and i’m moving him out of there by any means necessary.  Over the shoulder would be good but he’s getting too heavy.  So I stand him up, he crumples back to the floor making sure he hurts his knees and hands in the process and we do this until we get outside, up and down like a little angry frog.  People should know at this point that catching my glance will equal Medusa’s stare and they’d be wise to jog on.

Sometimes at this point I will clock someone who knows, someone who’s been there and they give me that understanding Deidre Barlow face and it lifts my spirits momentarily.  Enough to get to a place to regain some composure and carry on with our day.

This meltdown cannot be bought off with a new toy, an ice cream or a trip to Disneyland Paris. It can last upto an hour and they are exhausting for us both.  There is no negotiating and I do not know if my cough feels like nails across a blackboard or thorns sticking in his ears.  It’s tragic and stressful, it’s really really stressful and I hate it.  I hate myself for losing my cool with him (not always but I am human) I do not hate myself for swearing at Judge Judys,  to avoid my wrath  don’t stare at us, don’t comment, don’t judge.  It’s hard enough.

Get me a taxi or a diazepam or preferably both and I’ll be forever grateful. 

 

 

Tea & sympathy

Today I had to go to Reilly’s school for a catch up with his teacher and other parents of children new to Benton Dene School.  I wasn’t sure I could actually keep my eyes open to get there after he was awake between 1am – 6.30am Monday night followed by an up at 4am last night.  I look like a dementor.

Aim of this afternoon was to drink tea and talk to other parents.  One thing for sure when you put a room full of parents of autistic children together theres not going to be any awkward silences that’s for sure.  Looking around the room it was a sea of nodding in agreement as we shared similar stories of meltdowns, no sleep and the rest of the issues that keep us on our toes.

Reilly as I expected is doing extremely well.  He is communicating brilliantly with his pecs boards and super comfortable in his new surroundings.  His transition from Beacon Hill to Benton Dene has been nowhere near as traumatic as I anticipated.  Luckily (I’ve had no replies to any of my issues) for North Tyneside Council he also loves his new transport and waits for the mini bus at the window every morning.

Obviously when it came to my time to speak I hardly came up for air, Alphabetically Autistic, The Life of Reilly blog & play, Really Reilly, grandparents sessions (lots of extremely good feedback re this) and the likes.

Just hammered home the fact that what we are doing is necessary and needed and made me proud to know I had a part in it.  I opted not to bring Reilly home with me and to leave him to come home on the school transport.  30 minutes to myself, alone you say, I’ll take that.

We have been to collect our registration certificate for Alphabetically Autistic today too so all round a productive and satisfying day.  Praying for sleep x

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The welcome surprise

I was just gearing myself up for the 25th viewing in 7 days of Alvin and the Chipmunks Road Chip when I got a message from my Mam.  It read ‘Get Reilly ready your Dad is going to take him out on the bus somewhere’ Pardon what?  I was off that settee quicker than Jack Flash and had his backpack packed and shoes on in about 60 seconds.  I love the little blighter to bits but when you get thrown a line like that one you can’t hang about. what will I do read a book, clean stuff, go to sleep, go out, sunbathe – possibilities are endless!

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Reilly was happy to go because he knows my Dad will get on as many buses as he fancies and won’t moan about it whereas I always have something else to do or somewhere else to be.  I waved them off and then sat down on the settee looking about the living room to ponder what I should do with my surprise break.  Play-doh with bits of hair wrapped in it on the TV cabinet and half a Thomas track set up, Ive seen it worse so no need to rush and get tidied cough cough.  Conservatory looks like a Toys R Us typhoon has run through it which I simply brushed to the one side where the curtain hangs over the door more so you can’t really see it.  Opened the garage door which has never contained a car, just boxes of crap that no-one wants but can’t be bothered to take the tip, mountains of tumble dryer fluff and a defrosted ice lolly –  stayed in there just long enough to grab the strawberry sorbet out the freezer then quickly shut the door again, not today garage.

So I sit eating strawberry sorbet and not doing the online shopping as requested by the husband because quite frankly I despise it but it’s better than taking Reilly shopping in person.  I cooked Shane some sausages last night for tea, Reilly grabbed a bowl and scooped up the dish water and added to the frying pan they were like broiled, soapy half cooked turds.  I switched off the gas and pondered what else to make him.  I needn’t have worried Shane said and I quote ‘nowt wrong with that man’ and proceeded to drain them off and refry them.  Absolutely disgusting.

I’m a little bit lost when I’m on my own but i’m not complaining I might even make a cup of tea without having to shield my cup from Reilly the Destroyer and catch up on Secret Agent or I might clean the bathroom, choices choices.

The moral to this story is have some downtime where you can.  It might be another fortnight before you get some.  Have a cuppa – stuff the washing!

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I captured a word on video! 

Lovely day today with Reilly, we went to Pet’s Corner in Jesmond. Sun was shining and there was a Thomas Train there which made Reilly super happy.

Reilly loves Jesmond Dene because it has everything he likes in one place and that’s park, cafe, ice cream, woods and chickens. What’s not to love?

I was over the moon when I took some video of him on the train today and managed to catch Reilly saying taraaaa to the people we left at the stop!  He’s said it only a few times before and I’ve not heard it in months.  I love it, small to some – the world to me.

Another massive achievement for Reilly today was he insisted on fastening his own shirt buttons, they are really small and fiddly but he would not be helped. Took a little while good job I wasn’t in a hurry but he got there.  Last time he attempted that on holiday he threw his shirt off the balcony.

He’s been mistaken for a girl twice today by random granny’s but I’ll forgive them it must be because he’s so bloody pretty!

We’ll not talk about the 2 hour meltdown when we got home, not today.  Love him.

Well done that man! 

Felt like I needed to post this as it’s so rare! When we get on the bus Reilly loves to put the coins in the drivers coin holder thingy, I always have to explain as Reilly literally won’t move til he’s had a bash.

As you can imagine sometimes I get the odd grunt, sometimes no response whatsoever from the drivers.  Not today! This driver when I told him about Reilly (after handing over a load of 20p’s and 10p’s – couldn’t have just been 2 pound coins that’s too easy) said don’t you worry and proceeded to show Reilly where to put the coins regardless of the queue behind who also didn’t mind one bit being held up.

Small gestures like this make a big difference in a world where we as SEN families are constantly battling for an easier ride.

What a star – driver 47842 thankyou!

Maybe it’s the sun but what a good week so far.

Let’s talk about PECS baby! & Tippy Talk

I’ve had a fabulous day with Reilly today.  Reilly got up about the same time as the sun so I decided to get out and about early.  we stood at his pecs board while he tried to work out what he wanted to do (I was praying not the swimming pool for purely selfish reasons) after continuous pointing at shopping trolly’s and Toys r Us signs (not today Reilly)  I switched on my Ipad and showed Reilly photos of various places we would normally visit.  He chose the Tim Lamb Centre. A great place in The Rising Sun Country Park with tons to do for the little ones and a good chance to relax a bit knowing its none judgey and everyone get’s it.  30 minutes on the bus, 15-20 presses of the bell to get off a swift explanation to the lovely bus driver and we were there.

I met some lovely people today parents, teachers and kids.  It never fails to astound me how very different all these children are.  I had a discussion while eating my lunch with one girl around 15 about who was the best Paul McCartney (post Beatles) or David Bowie and watched 4 second clips on her phone of many songs from both artists, she had unbelievable knowledge and passion in equal amounts. ps David Bowie by the way no competition.  

I also chatted to a teacher who was there with a young man again around 15 who was completely non verbal.  I’m always fascinated watching people communicate and the methods they use to do it.  I often think about whether Reilly will always be non verbal and I prepare myself constantly looking for products that can help us.  I talked to him about a product I was trialling at the moment that may be useful to them.

I registered my interest in a product called Tippy Talk earlier on in the year.  I’d seen it on twitter and thought it looked fantastic.  Tippy Talk is an app which allows the user to translate picture messages into readable text.  What’s not to love here.

ttThe TippyTalk app allows a person with a verbal disability to communicate by translating pictures into text messages, which are then sent to a family member or care givers phone or tablet. This allows the person who is non-verbal to communicate and express a desire, want, need or feeling. This communication is not restricted by distance, the person they wish to communicate with can be anywhere in the world. TippyTalk also reinforces language development, by allowing a parent or caregiver record their voice over each picture. TippyTalk grows and evolves as the needs of your loved will also.

TippyTalk is unique in that it removes the person with the verbal disability from the isolation of same room communication. It also allows the parent or caregiver to capture images that are  uniquely familiar to the person using the communication app. No two TippyTalkers will be the same, each unit is extremely user friendly and simple to program. Putting the control back into the hands of the parent, after all no one knows their loved ones better than they do. No other product on the market today is offering the personalisation, social-communication and independence that TippyTalk is providing. TippyTalk is breaking down communication barriers by allowing the user to connect and communicate with two or more parties at the same time, while ensuring that this communication is not limited by distance or physical impairment.

Rob Laffan the creator contacted me after reading my blog and asked me if I’d like to trial it with Reilly.  He has a daughter just like Reilly so he get’s it. The verdict is I love it.  It’s so simple.  I have only just started teaching Reilly what it is all about and once he starts to really understand that his requests are instantly received regardless of whether i’m upstairs, outside or at the shopping centre I fear my phone may never recover from the constant messaging it’s going to receive.  I will video the whole process of Reilly using Tippy Talk and how the messages are displayed in real time.

Reilly can tell us he is sad, that he wants a hug etc.  I can see it being hugely helpful with simmering meltdowns when all is lost in the frustration of communication.

We need to be able to communicate.  Looking around the Tim Lamb Centre today it was a big melting pot of different methods. I NEED to be able to have a two way conversation with Reilly it’s all I think about  and I’d trade for a lottery win in an instant.  You will never know the pain of not knowing why your child is unwell or upset until you’ve walked in our shoes.  Tippy Talk will change that I’m sure.

There’s a free trial at the moment check the website for links to download.  No I’m not on commission, when I see a good product I’ll share it.

Watch this space for the video of myself and Reilly using Tippy Talk.  Previous video scrapped because it contained spontaneous nose picking followed by close up examination and tasting by Reilly. Still looked cute but not the production I was looking for.

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Happy Days

Moving on from my horrific night of panic the other night which was caused I think by me overthinking and underestimating  Reilly’s ability to cope with change.  I imagined our visit to his new school to be filled with starfishes on the tarmac, kicking school doors, biting teachers (he’s never bitten so thats ridiculous) and escape attempts.  Instead it was fabulous first of all taking off his shoes and putting on a pair of angry bird wellies he found at the door, playing with train track and painting Thomas toys, actual toys not drawings.  He didn’t want to leave! Queue the massive sigh of relief.

Not one to build up my hopes I prepared for a showdown this morning when I dropped him off to spend the morning on his own at Benton Dene.  Not a squeak from him, he didn’t even turn around as he was led off with his new classmates. I cannot express how happy this made me feel.  Where was the Reilly that wants me to carry him around on a piggy back 24/7?, don’t forget I am Hodor he is attached at most times, my neighbours will confirm lol.

I see some independence growing in my little man and I like it.  Picked him up took him to his current school Beacon Hill and happy days I’m back home.  No meltdowns.  Result!

I have so much love for both of these schools and we are incredibly lucky to have them  in North Tyneside.  I’m sure they must give patience out when studying in the special needs field.  I have never seen anyone stressed or outwardly under pressure with these fabulous little humans while in school.  Just fills me with confidence and praise in the work that they do.  We may not make it apparent but the second the kids are in school we breathe a sigh of relief that we know they are cared for and learning in superb environments and this is due to the people at grassroots level in those schools.  It is some respite time to refocus and plan for the day ahead and it actually saves my sanity.  I may start a petition for only 2 week summer holidays..Who’s with me? hahaha.

ps I must say I am completely shocked at how many people are reading this blog who are teachers, tutors and parents, literally every person I spoke to.  Might need a disclaimer signing in the near future 😉

 

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