10 Reasons to come see the life of reilly

Don’t just take my word for it. There are hundreds who will back up my claim that this play is groundbreaking. A must see for everyone!

1

A thought provoking, funny, emotional, educational and honest insight into real family life with autism. I laughed and I cried, I listened and I learnt. This is a must see for all, highly recommended.

2

This is not a play aimed at parents of autistic children. This is not a play highlighting the concerns, traumas, battles and challenges they face on a daily basis. This is not a play that makes you realise you’re not the only one serving up beige food. This is a play for the whole of society. A play that will make you realise that autistic people are the same as everyone else, just different. This is a play that will make you belly laugh, a play that will make you weep, a play that will make you realise how intolerant our society has become. This is a play that you must see, watch it with open eyes, an open heart and above all an open mind.

3

Watching similarities of your own personal story being played out in front of you with such honesty and rawness made this play unforgettable. The humour and simplicity of what parents face on a daily basis was demonstrated throughout and it gave a magnificent insight into the wonderful world of Autism. Great for raising awareness and showing the reality of what happens behind closed doors xx a must see x

4

A must see for everyone! Such an in-depth insight into the world of autism from point of diagnosis to dealing with the daily struggles of meltdowns and routines not to mention the completely unhelpful opinions of people on the outside! The play is an emotional but accurate account highlighting the need for acceptance and empathy. Absolutely incredible and really keeps you gripped from start to finish. Well done to the writers and cast, I cannot wait to see the film! 💙

5

Incredible performance last night by all the cast. My son Fletcher has ASD and we can completely relate to the issues raised in the play. I only wish all my friends and family could have been there to see how incredibly hard it is for children and young people with ASD and their families. The fight continues #understanding #support

6

This play pulls no punches in telling how Autism impacts on everyday life for all concerned. The joys…..of which there are many the heartache, the frustration, the lack of understanding, the struggle for services….I don’t know how they achieved to convey all of this with humour, pathos and sensitivity. I would recommend this play to everyone. I’ll be going to see it again.

7

Spellbinding. Better than The Curious Incident of The Dog

8

What can I say? As a step-Mum of a boy with Asperger’s, this play had me weeping both with its raw honesty and its humour. It’s a must see production… but bring a tissue! Well done to all, it’s so rare to see such an accurate portrayal of life for a family on the spectrum.

9

I absolutely loved this! They represented the autistic spectrum with dignity, and humour, whilst showing the challenges of living in a world that insists on conformity.

10

This was a such a powerful story, I know people dealing with similar realities and their description matched the journey I was taken into by this amazing project. Very strong collaboration and performances too. This deserves to be watched and shared!

Next show is 7th Feb at Northen Stage tickets available here

2019 Good Riddance – A Dad's blog.

It’s been quite some time since my last blog, so long I can’t remember the last time I wrote one to be honest; quite a lot has happened in Reilly’s life, development and this has changed the dynamics of the house somewhat and had a profound effect on us all as a family.

The first 6 months of the year seemed to pass without too much incident in the grand scheme of things from Reilly’s point of view (I think), our boy rolled with his routine, he settled into his Monday to Friday routine of going in his school transport without too much issue, developed academically very well, he’s by all accounts a helpful, keen student even taking it on himself to collect the class register and participate in running 1 mile a day with few of his class mates and his teacher.

After school in the lighter nights Reilly is keen on playing out in the street, going swimming, going to Air box trampoline park, the Cinema (we tried numerous times but it’s just too overwhelming for him and he is off before the movie starts), Weetslade country park; Fridays are different we always get the bus, same X8, has to be a double decker so he can sit up stairs and get a good vantage point on his journey, straight off the bus at the Haymarket and into Greggs for a sprinkled donought and a bottle of Dr Pepper light then through M and S up the glass lift and depending on his mood its Fenwick’s toy department or HMV or both.

After shopping it’s like clockwork off to Subway for a Bacon sandwich and pop sitting in the front window watching the Buses pulling out of the station.

So good so far right?

During this period of relative stability as I have mentioned in previous posts I have wrote ordinary life goes on, bills have to be paid, work commitments have to be fulfilled, cars will still break down; even in times of really unsettled behaviours unfortunately the same applies.

The first 6 months of 2019 were tough for many reasons personally, like most in modern life we are spinning numerous plates and modern life is stressful enough and parents often neglect self-care; too busy earning money to pay the dreaded bills, keep the car on the road, the roof over the head, rushing between kids activities, probably sounds very familiar to most I would imagine.

I will try to explain the gradual decline that spiralled out of control that with self-care I could of I am sure handled it better, the problem is if you’re in a lifestyle that doesn’t include regular self-care you like me probably won’t see the signs of what is coming and you dig in and think it will pass.

Towards the end of 2018 we lost a dear friend, a really kind soul Glenn who suffered like myself with mental health issues; in January we lost another dear friend Eddie to cancer after a short period of diagnosis, both fine young men were far younger than myself and should have had the world at their feet and deserved to live full and happy lives.

At this point I am seriously considering morality, Reilly’s complexities potentially may or may not need to rely on a support network as he moves into adulthood; we have little in way of support as parents get older, health declines and he’s an energetic bundle as he should be as a young lad. The first thoughts of what happens if it’s me next creep into my head, who will look after him? Who can he rely on? At this point it’s a daily thought and I try to rationalise with myself that’s not going to happen everything will be ok…..

A short period of time later I lost another friend, Gavin the word character could have been invented for him; Gavin was slightly older and like myself a father and like Glenn and Eddie he should have had years life and happiness ahead of him.

Watching the pain, anguish and struggle of bereaved parents is unbearable; I know what they are going through the fights they face and as kind as peoples intentions are bar odd chinks of normality nothing stops the living hell of how final it is. I know because I am a bereaved parent.

The rationalising with myself is now becoming more frequent and my worries are becoming more and more real in my own mind….

Still trying to hold myself together the crushing news comes in a phone call my friend Anthony is in hospital, diagnosis pancreatic cancer; kind, funny, principled, slightly younger than myself and also a father.

Again the first thoughts are this is shit, just wrong, a very fit young man, regular half marathon runner, he should have his life, a long happy life. The battle in my head is now all consuming in fact its lost, well and truly lost at this point. I make an appointment to see my GP and continue as best as I can to function at work and as a parent.

Getting back to Reilly, at this time my head is a mess, I spend time with him and all I can think of is what will become of him, will he need support, will he have a career and who will care for him, protect him and support him? The day before I was at the GP’s I attended a concert at his school and all I could do was cry, not out of pride but fear, real fear for his future.

I left that concert and went home with stomach cramps, never slept and rang in sick the next morning, went to the GP’s unloaded on him and was as honest as I could be, top tip to any men if you don’t be honest you can’t get the correct help. I will be forever grateful to the GP and my friends who recognised the signs and offered unconditional help and support.

The severity of the cramps had been on and off for periods of months and In my lost battle in my thoughts I was terminally ill, the GP took what seemed like a dozen samples and reassured me it was stress related and proscribed a new course of anti-depressants, diazepam and signed me off work for 3 weeks.  Work were supportive thankfully, the next few weeks existed of wondering around the house and waiting for the kids to come in to have a sense of purpose.

Fast forward 2 weeks and results day at the GPs, I was physically sick before I went I was that convinced I was seriously ill. The GP got straight to the point and advised me I had neglected my own care in short, was suffering with stress/depression related illness and I was type 2 diabetic undiagnosed for considerable time. I have never been so relieved in my life as a result I have had to alter my lifestyle, take the medication, slowly build up my mental health and taking enjoyment out of my life and being a parent. I returned to work after 6 weeks and have nothing but praise for the way I was supported and treated since, it’s easy sometimes to forget who helped you when you needed it, but remember you should and repay them and stay loyal to them in the future.

Anthony was a dear friend and comrade, whether it was that daft message, a phone call, quick pint, a music session or a day out to the football there was never a dull moment.  His battle and outlook on life will stay with me forever, so brave and dignified.

My outlook on the future is still very much a case of uncertainty, I still question my morality and the what ifs creep in but I can shut them out and replace them with positive thoughts and behaviours; the truth is even neurotypical kid’s parents will have worries of their kids futures but unfortunately it’s not a level playing field with a child or a young adult with ASD is it?

For any readers who aren’t familiar with me I am very opposed to the current government and their savage cuts on social care, the NHS, education and the welfare state; I will openly challenge people in person or on any platform available. I make no apologies and stand by position, an example is £0 yes £0 extra funding for SEN schools from 2023, the current lot don’t want to educate my child never mind care for him if god forbid the what ifs ever became reality.

So when you think here he goes again banging on about Labour or Socialism or the likes you now have a deeper understanding of what makes me and my wife tick, I like you want an equal, fair and accepting society for my kid as you do yours; I don’t expect special treatment just a level playing field it’s not too much to ask. What isn’t ok is 1000’s of kids and families struggling out of education, unsupported, confused and suicidal in a world they don’t understand, parents struggling relying on charities and kindness as the magic money tree doesn’t stretch to our kids.

Recent political goings on don’t fill me with long term confidence so we have options to consider what is in our best interests as a family, for Reilly individually and what can we do to remove uncertainties and improve the outlook for families, ASD kids and as importantly young adults.

If we don’t take the lead who will? No one is my guess, bar our own community bubble of teachers, parents, families we are very much on our own in my opinion.

Ps. the second 6 months were an absolute disaster in terms of Reilly and his behaviours bless him but that’s another blog.

Finding the calm in chaos

I like to think I hold it together pretty well ordinarily. I’ve functioned on little sleep for years now and appreciate it more than you know when I clock up more than 5 hours. I decided to write this post because in the last couple of weeks I’ve really not felt myself at all and I know we can all feel like that so thought I would share, sharing’s caring and all that.

I’ve never made a secret that I rely on my anti-depressants to function. There is no shame in that. Considering that lack of sleep massively affects mood and anxiety is it any wonder. At the moment I am anxious about everything. Reilly is incredibly clingy for me, more so than usual. He doesn’t want to go to school, wont get in his transport and has spent every morning this week hiding uniform and trying to flush his shoes. He google images NO School, yet he loves it when he gets there and he shows me on the laptop and makes the letters DVD by contorting his fingers to spell it out. Can I blame him? Hell no. I’d rather stay in bed too, snuggling but sadly I just can’t and neither can he.

In these moments when he is pained to be separated it really hits home about his future. This drives further anxiety and the cycle continues. I have plenty of time to think about it. While he listens to the same 30 seconds of Peppa Pig at the Museum on repeat while turning the light on and off I think about it. His current melatonin is much to blame (just changed) it’s useless, which is something I will address properly with GP etc. I can GUARANTEE the cost of Reilly’s lack of sleep will cost the authorities more in the long run.

I’m missing important meetings and it makes me wonder is it time to stop and just be Reilly’s Mam for a bit. Full focus. Truth is I find that very daunting. I’m not a domestic goddess, I don’t thrive on a tidy home with kids lunchboxes neatly packed with healthy snacks. Not me never has been. Even if I had the time I probably wouldn’t do it. What I do have is patience by the bucket load but recently I think theres a hole in my bucket. My laidback manner is on edge and tetchy and I don’t like it. I’ve pulled out the big guns this week with a text from Santa and a xmas tree removal for gods sake. It’s not his fault. What I am angry at is me losing my grip on keeping it all together.

My work life has been incredibly busy. Life of Reilly has performed twice this week, the film is coming on an absolute treat and we inch closer to our hearts with goals charity ball next Sunday. Thank god my partners in crime Kelly and Alison are helping me where normally they wouldn’t need to. Another week or so and I can maybe breathe again.

This isn’t a woe is me post. I’ve kicked my own arse and pulled my own socks up a million times this week, its a plea for understanding. If I scurry past you in the shops its because i’m not in the place for chit chat, if I glance away when I do talk to you my mind is probably somewhere else, if your message sits unopened in my messenger know it’s not through malice.

I look forward to a cheerier blog post next week and in the meantime i’m ok with the fact that sometimes i’m not ok and you are not alone if you are feeling the same way. I’ve hard a hard week. Next week is something entirely new. Self care, priorities,being kinder to myself and less procrastination order of the day. xx

Penny for my thoughts

Today has got me thinking. You know when I have time to really think is a rare thing these days. My choice in a way, when I’m busy it quietens the mental chatter that i try to mute.

Shane was out shopping with Ellis and me and Reilly stayed at the villa he loves a bit of solo time with me and spends most of it stuck cheek to cheek. He went inside to watch Toy Story 4 and I pulled my sun lounger to the patio door do I could see him and he’d have to hurdle me to go unnoticed when passing. I got 2 hours sun bed time! What a result. My mind however was in overdrive, in overdrive with all the things I push to the parts at the back of my mind marked later.

I lay watching him pausing, rewinding the same parts of his film with absolute joy on his face and I felt such relief. He’d had a bad morning, filled with anxiety which comes out as plain bossy and awkward. We know it’s not and it’s in fact Reilly’s way of keeping control. It’s upsetting, Ellis still takes it personally, Shane and myself take it for what it is. An anxious little boy trying to make his world right and we’ll do anything to help.

I sat trying to envisage Reilly as a young man. What will he be doing? He’s incredibly bright. I wonder what his exam results will be, will he stay in school, could he train with his Dad? I know he will find his way but I feel we need to start laying the path. I can wait and see how he does or can try and plan. I chose the latter.

One thing I have learned is NEVER underestimate him. Just this morning he took the melon from the fridge and took me to the pool and gestured putting it in. I said no he gestured yes. This went on for 20 mins before he put it down. Fast forward an hour in the local shop and he leads me straight to the inflatables aisle and picks up the box with a clear picture of inflatable watermelon on it. He’s a genius. It was 35 euro I bartered him down to a 7.50 Lightening McQueen instead.

Like I say never underestimate he always finds a way. Resilience is incredible. independence is fierce. He’s a winner I’m sure of it but what if I’m wrong. Nothing is set in stone for any of our kids.

Shane has talked incessantly about moving abroad for years. I tried for months to find the right place to stay. Does it lock, is it noisy, is there a washer, how deep is the pool, how far the beach, is there a garden, transfer not too far, air con etc etc. What if we had a Reilly’s place for us and other families that is equipped and I mean truly equipped for our needs. Could that be it? Could that be something that Reilly could grow with and eventually run himself?

Who knows but the seed is planted and you know we love a challenge….

Villa v Hotel with Reilly

Villa wins hands down!!

I swore after our last holiday in a hotel I’d never do it again. Why? Simple because I just don’t feel secure. I can’t relax, I can’t sleep. That’s not a holiday. Shane slept on a mattress wedging the door shut to stop him escaping and me against the balcony. Too many people didn’t understand him, the dining room was a melting pot of noise, people and smells. Just too much which resulted in me being in the room by 7pm every night with a pizza.

This time we have space, masses of it. 3 bathrooms. Gates and most importantly no people. We are about 20 metres from the beach and a 5-10 min walk to supermarket and restaurants. It’s idyllic. This is not where you come to browse the shops for ropey bracelets and fridge magnets (which I love). You can get a bus to Marbella or Fuengirola for 2 euros the bus stop is a 10 minute walk. You can hear the sea when you are in bed and there’s not another sound. 30 mins from Malaga between Fuengirola and Marbella.

I love it but for me I’d like a little bit more closer but the trade off of no overloads for Reilly is a winner.

NaN in the Costa Del Sol

We are here it’s day 3!

We were up at 4am on Friday to catch a flight to Malaga. I’m always terrified that Reilly will have a meltdown but today has been a breeze.

I’d already downloaded the autism passport from the Airport website and filled that in but to be fair never showed it to anyone. We timed it so we’d spend as little time in the airport as possible. We checked in with a lovely lady called Abbie who told us to go to Gate 19 at 6am if we wanted a bit of peace 👌 and were directed to the passenger assistance booth to pick up a sunflower lanyard.

The lanyard meant we could pass straight through fast track security. No waiting, no queues. We just had time to get a few bottles of water and some sarnies for the plane and we were off.

He was brilliant on the flight. I had ear defenders, iPad with Tory Story 4, Life of Pets2, a series of Postman Pat and a series of Thomas. There were a couple of coughs which caused him to scream and scratch himself. It’s awful I really don’t know how to solve it.

Our villa is 20 metres from the beach so makes it easy to run between pool and beach, he loves them both ❤️. All in all a great first day but the night was horrific. The change in surroundings, sensory issues etc caused Reilly to become incredibly anxious. He cried and googled, home, airport, Jet2 for hours. I admit I googled flights after 2 hours. He was broken hearted 😩. I managed to calm him and get him to sleep. He woke the next morning happy and he’s been that way ever since (apart from a trip on the bus to Marbella with the loudest cougher on the Del Sol).

I also have an announcement…. as you all know I have never heard him say Mam. Well now I have, it sounds like NaN but I’ll take it. 😊 I’ve heard it at least 30 times in 3 days. When he wants me or needs something it’s NaN ❤️ he said it when I was away last week while looking in all the rooms at home, I was gutted I missed it and felt really emotional when Shane text me 😊. He asked him do you mean Mam and he signed yes. So if you see me I’m not his granny or NaN I’ve just had a hard paper round 😂

Shane’s Mam leaves tomorrow so it’s just the 4 of us til Friday. We are working shifts as normal so we can get time with Ellis alone, I thoroughly enjoyed my meal on the beach last night it’s Ellis and it’s Shane’s turn tonight. Reilly is more of a Burger King kind of guy ❤️

The lads are spending some great time together in the pool and Reilly copies everything else does which is lovely to see. Holidays are worth their weight in gold for us. This interaction just doesn’t happen at home.

Looking forward to the next few days 😊

From the other side

I recently asked my friend Dave if he would be interested in writing a guest blog for The Life of Reilly. He’s always been fascinated by Reilly, I’ve watched them bake, prepare food,set up tracks together and Dave is always looking for new ways to communicate and engage with him. I have never considered the other side. The guilt others can feel when they see their own friends struggling. This blog has had me in tears. ❤️

Being a parent can be tough. We can all agree to that. There are times of great joy and pride, especially in the early years when they begin walking, talking and doing all the funny things toddlers do. Even the ‘terrible twos’ and ‘awful fours’ didn’t detract from it too much for me. I was just revelling in being able to have simple conversations with my little boy and other than the regular tantrums he was generally really nice to be around.

The other end of the scale, of course, is the teenager. Where they talk to you in grunts and go all moody for the slightest reason. I can deal with that, as foster carers we’ve been dealing with moody teens for 20 years. You have a spat, go your separate ways and still end up having a decent conversation with them later… if you’re lucky.

The bit in between this is the most frustrating. The 5 to 10 year old phase. The bit where just the sound of their voice saying ‘Maaam!’ Or ‘Daaad!’ for the thousandth time that morning grates on you so much you keep thinking ‘Jesus Christ I wish he’d just shut up’

It’s more than that of course. It’s the communication itself that winds you up. The incessant whingeing, demanding, trying to get each other into trouble, being awkward, the backchatting… the list goes on…

I don’t mind admitting that quite often I’ve wished that, even just for just one day, he would just stop speaking.

But then… I’m the father of a neuro typical child and when he is quiet, I can enjoy that silence, knowing that he’ll be bending my ear again in a little while.

The amazing family at the heart of this blog have been there from the beginning. Clare, my wife, and Christine were pregnant at the same time and we worked together before and after the boys were both born. We socialised and holidayed as families and watched them grow and develop together… until they didn’t.

With heavy hearts we watched this family go through the realisation process and diagnosis of Autism for their son and with a sense of guilt, we watched our boy develop rapidly whilst Reilly just… didn’t.

Watching Reilly’s autism take shape was heartbreaking. His melt downs and challenging behaviours were one thing but the fact he is non verbal is the thing that has always affected me deeply. Watching him and his parents not being able to communicate is what makes me give my head a wobble when I get frustrated about the incessant kids voices around me. I know that Christine and Shane would give anything to have Reilly shout Mam or Dad just once never mind a hundred times. To have a simple conversation about what he wants for tea or where he wants to go but most importantly, to be able to ask him what is wrong when he gets upset.

In recent years things have changed. We moved out of the area and our working lives have gone in different directions which means we don’t get anywhere near the time together that we did or that we’d like but it does happen and it’s always a joy to have them around.

I’ve never found being with Reilly difficult. He’s different that’s all. Challenging at times but it’s never disturbed or frightened me. It’s never dissuaded me from trying to interact with him on the most meaningful level I can. I try every time I’m with him and mostly he seems to ignore me… and that’s ok.

Recently though, it’s been different. We know that he’s beginning to communicate in a multitude of different ways and every little win makes my heart swell for them…

Out of the blue last week, Reilly asked to come and see us and as always it was nice to have them here but what happened that day just blew me away.

Reilly went to our kitchen and I went with him as usual, just to see he’s ok and try to gauge what he might be after. He opened our food cupboard and our conversation went as follows.

Are you hungry?

Reilly made the sign for Please/Yes

Ok… what would you like?

He went to the other bench and tapped the bread. Now I know Reilly loves toast so…

Do you want some toast?

“Yes”

What would you like on it?

He opened the cupboard and pointed to the Nutella.

Ok, toast with Nutella?

“Yes”

I was already amazed but I wanted to see how far I could take this with him. He went to the table and took a seat.

Do you want thick bread Reilly?

“No” …spoken, not signed

Would you like butter on?

“No”

So I made him his toast and, after confirming with Christine on his current preference for shape and construction, I put it down to him.

He signed “thank you” and our conversation was done and I’ve never felt so overjoyed to talk to someone, to communicate, even on a simple level with someone I thought I might never be able to. This was a full blown conversation too. Question and answer, conclusion reached and he was happy.

I, however, was over the bloody moon.

We take communicating with our children for granted. We get frustrated at it at times but I never seriously wish my son would stop speaking… I know how hard it must be and I wouldn’t wish it on anyone.