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.

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.

Thank god for that!

Four words.  Four very simple words with a massive impact.

There is a line in the play The Life of Reilly which is delivered by autistic actor Scott and it says “They say words behind my back that move to my heart and break it”. It’s about thoughtless people, I met some of those today.

The holidays are hard for us, when I say us I think it’s safe to say I speak for many. We are 4 weeks into the holidays the kids are out of routine and back to school anxiety is taking root. I’ve given my Katniss salute to a few when I’ve seen them out and about. Just so they know I know, I get it.

 

Reilly made it really clear today he wanted to get the bus into Town so that’s exactly what we did. I was a bit nervous about it as sometimes Reilly will want a certain registration plate rather than bus number, I am many things but a conjurer I am not. Anyway all good a double decker came immediately and we had a lovely ride in.

He has a route he takes every time and that’s through M & S and then straight to Fenwicks or HMV. Today was HMV for a new DVD. I should really take a camping chair as we could be there all day while he looks at all the covers. He bought Thomas Trouble on the Tracks then led the way back to the Haymarket. No stopping for an ice cream at Mark Toneys or Fenwicks so knew something wasn’t quite right.

A doughnut from Greggs and we got back on the bus. He didn’t want to get on it but seeing as I don’t live in Whitley Bay his choice was out.

It was horrific. From the second the bus moved he screamed literally til he couldn’t breathe. He was shouting go back and clawing at his own skin. He is covered in scratches. Now I knew if I turned around I would see, best case scenario would be 2 different types of reaction. Half bus thinking ah poor woman and child other half wish sh’d shut him up. Worst case would be a bus full of the latter.

A man and woman late 60s ish were sat in the seat behind me. I could hear moaning and would occasionally see her hands go up to her ears. Did I turn around and boot her? No maybe she had sensory issues, maybe there’s more to her story. So I persevered with Reilly. I cuddled him, I kissed his scratches, I explained we had to go home. Not once did I raise my voice or get angry with him. He’s non verbal this is his communication. Me getting angry would achieve nothing. In this situation I have to his anchor and safety net. I could almost hear them willing me to give him a smack.

Worst 25 mins Ive ever had with him. I was sweating, stressed and on the verge of tears. As the couple got off they avoided my eye contact and I heard her say to the driver in a snidey tone “THANK GOD FOR THAT!” Not satisfied that she was getting off the bus and out of the situation but wanting to drum up some comrades of hate, which she didn’t get. one lady said to me some people just don’t get it, they are awful and she’s right.

I did my best for my boy that’s all I can do. Everyone else has the luxury of moving their seat. What am I supposed to do? Get off?

I’ll tell you what YOU can do in this scenario.

  1. Don’t tut.
  2. Don’t roll your eyes to the person across the way.
  3. Don’t do massive loud exhales of breath behind my head you might lose your lips.
  4. Don’t stare.
  5. Say things like I know there’s maybe nothing I can do but let me know if I can.
  6. Be a friend. A knowing smile is enough to top up our batteries.
  7. Don’t judge. This isn’t bad parenting.
  8. If you get off at the same stop offer to carry a bag, ring someone. Our hands are usually full.
  9. Move your seat. If it’s too much I understand honest I do.
  10. Give us a break.

I did mouth out the window WTF is wrong with you which she saw. She just looked at me disgusted. I’m over it now but for the love of Tom people pack it in!

When I eventually got him home I tried to work out what happened. I know he wanted to go back to town and kept handing me my bag. He took my phone and typed this ….

He had changed his mind about the DVD he bought in HMV. Honestly I’m heartbroken. The meltdown was born through pure frustration because he couldn’t tell me. I had put my phone away to hold him on the bus. My little lad and what he does every day deserves a medal of Olympic standard.

I put him in the car, drove to HMV metro centre and changed his DVD. We went to the Disney shop and the lady on the till recognised him immediately from his blog and Facebook which was lovely. We had a Burger King and shoved some wool up the sucker in the build a bear factory (always a favourite).

Up yours old cow on the bus. Maybe some education from playing outside your house maybe useful?

Time out – Fringe

I’m lying in bed in Edinburgh reflecting over the last couple of days. I love Edinburgh Fringe firstly. It’s buzzing. There are people from all walks of life from all over the world in this brilliant arty melting pot.

I’ve used the last couple of days to spend time with Ellis my 12 year old. Whisk him away from the absolute carnage and chaos our home has become since the schools broke up. Reilly has been pretty reclusive so at home A LOT! That becomes a problem for myself and Ellis as he hates us eating, weeing, coughing and so on. We do our best to avoid meltdowns for our own sake as well as Reilly’s but sometimes it’s just impossible. We are back to 2 plates left in the shell of a kitchen we’ve just started renovating.

Time is priceless. We have eaten meals out, chatted, shared secrets, watched TV, caught a show and Ellis has watched our show numerous times. This is so beneficial. He sees how the parents are trying their best. He sees how the sibling loves her brother but feels guilt at the resentment she feels. He sees how difficult life can be for Reilly.

I have loved my time with him. I’m having a rough time at the minute and this was much needed. It has made me reevaluate my own life and how I spend my time.

The play is smashing Fringe. The feedback is outstanding. I’m so proud to work with such incredible people. I watched a lady sob in front of me today during the performance. I watched her nod in agreement at every familiar phrase and reach for tissues in moments of poignancy. I got out the door first at the end of the play so I could give her a cuddle. She needed it and so did I.

One week to go. Come see it at https://tickets.edfringe.com/whats-on/life-of-reilly xx