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?

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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

Edinburgh Fringe

 

“I may not speak but i can bloody hear you!”

Firstly I must apologise for my lack of posts of late.  I find it near impossible when Reilly is off school to access anything that actually plugs in – kettle, TV, DVD, Ipad, phone and laptop.  Its been a long 2 weeks so far Reilly is back to not allowing me  to eat or drink  anything when he is around the house which when he is at school is pretty manageable,  while he’s off it’s impossible.  His routine is out and it’s hard on him and in turn us.  But we do best we can and keep moving forward.

Behind the scenes it’s all systems go with The Life of Reilly play.  There is a show at The Cluny in Newcastle on Wednesday which is SOLD OUT and that will warm everyone up nicely for Edinburgh Fringe!  We will play there at TheSpace on the Mile from the 12th – 14th August (not 18th).  It is an incredible venue right in the heart of the festival.  I have to admit I did not realise how freaking massive Fringe is.  It wasn’t until I was flicking through the guide that it actually dawned on me that this is a huge deal for us.

The work going on alongside it is actually more than a full time job.  There’s hundreds of rehearsals obviously,  the Fringe version is only 50 minutes long so the original play has been cut massively.  It works though and I think it will be very popular with the die hard theatre goers who attend Fringe.   The cast are staying in caravans for the duration at Seton Sands a 15 minute train ride out of the centre.  Accommodation during Fringe is a bit like school holidays everything trebles so being such a large cast it was the only sensible option.  It’s taken a lot of planning and everyone in the production has really pulled together.  Scott our autistic actor is travelling back and forward daily which shows his absolute dedication to the play.  Edinburgh is busy and overwhelming at the best of times but Fringe takes it to another level.

This week we’ve been looking at ways to attract attention during Fringe.  We are already shortlisted for a SIT Up award which is Social Inclusion Theatre. This is fantastic and harnesses everything we stand for. We also need to grab the publics attention, never waste an opportunity to educate, be it on the streets or on the stage.

All in all i’m really excited, the reviewers can be brutal so gearing up for the good, the bad and the ugly! We know that audiences across the North East love The Life of Reilly with it’s thoroughly relatable characters, Northern humour and honesty.  Praying the Fringe participants will too. This play is worthy of any stage, wherever in the world as it’s message is a universal one of autism acceptance and love.

Come see it!  Life of Reilly Tickets.

Come say hi if you see us.  If you hear the Death March from Star Wars there may just be the cast of Life of Reilly in tow.

“To change the world, you must first change your mind” – Hendrix.

Let’s change some minds!

xx

'Beautifully written, full of touching moments & fantastic acting'

Lessons

Today has taught me many things.

  • I’ll never go on holiday in a hotel with Reilly as long as I live.
  • I know what every floor in Hilton Gateshead looks like.
  • I know what every lift in Hilton looks like.
  • I know what every toilet in Hilton looks like.
  • For the amount of running I do I should be skinny.
  • I have shouted “don’t you go near Robs car” on more occasions than I care to mention.
  • My middle child Ellis is growing up too fast. First razor bought today.
  • That there are a lot of people who will let you down and disappoint you.
  • There are a lot of people who will cheer and champion you regardless.
  • That gluten free/dairy free pizza from dominos is not a replacement for an original Americano.
  • That mental health is more important than anything. ANYTHING.

Was fantastic to take Reilly to Brooke’s (Ellie in The Life of Reilly) party tonight. We stayed way longer than I thought we would he thoroughly enjoyed himself. I didn’t sit down once and must have looked like Flash Gordon in my yellow jacket trying to stop Reilly moving lights, knocking over fountains, getting in fountains.

We had to split as always Shane/Ellis to footy presentation and Me/Reilly to party. I’ve stressed non stop all day about taking him but so pleased I did.

The young girls at the party were so courteous. Standing in queues distresses him. They would let him in first little things make a huge difference.

Big shout to the IceCream Man. Interacting with Reilly like an absolute star. Love it when people make an effort with him.

All in all a great time, thoroughly exhausting but he loved it ❤️. Thankyou to everyone.

It’s a long one ….

It has taken me most of today to get over the nerves and excitement from yesterday.  Unless you work in the industry you cannot imagine the amount of work that goes into getting that show on stage. It started off being a very late one the night before battling the clock trying to get a programme together to give to guests. I eventually put the lap top down at 2am and then lay thinking about all the things that could go wrong. I’m anxious all the time anyway but this week i’ve been hyper aware of it.

Alarm went off at 6am and I hammered away at it only pausing to get Reilly off to school. 10.20 I hit send and prayed my friend at Sploshh could print it in time (straight opposite Northern Stage so terribly handy).

Into the bathroom and there’s my toothbrush accompanied by a something I’d rather not talk about that certainly didn’t belong to me. Irretrievable. What a start.

I’ll spare you the details of the inbetween things that went wrong like the allergic reaction to my handbag and the urgent antihistamines. Back to the play.

The Life of Reilly play is blessed with being an incredible set of cast and crew.  When I say crew I include the parents of the girls.  They are there for every rehearsal and help out as much as anyone on the day.  That in turn means their families must readjust for their other children etc and we are eternally grateful. There’s always an emergency pair of American Tan tights to run for for Grandma Mary and in this case a single duvet and some fairy lights.

It was really exciting for everyone for the cast to meet Paul, Nicky & Hannah (and Dani later on) from TryLife for the first time. There to start documenting the rise of Life of Reilly. Interviews, candid shots and all round greatness. Also Kieran Rose The Autistic Advocate who has been an absolute godsend giving brutal honesty on the things he has loved or loathed about the production. We have taken every piece of advice on board and it has helped the play evolve over the last year into something really special.

From arranging vans and drivers, learning scripts, techs, lighting, props, tickets, guests it’s pretty exhausting.

Yesterdays show was by invite only at Northern Stage.  Some of the regions top business/industry men and women. There were canapés (Thank you McKennas) and bubbles on arrival and the whole thing made me stand back and admire what the play has become.  I admit seeing Ian Whyte from Game of Thrones got me incredibly excited as many will tell you i’m a little bit obsessed.  I tried for spoilers for the finale but sadly I didn’t get any, I found it highly amusing that when the photographer from Luxe Magazine cane along I was dressed with makeup on and Alison was in costume (she’s usually super glam with sparkly nails and immaculate hair etc) leggings, T-shirt with Nutella on, no make up and her hair in a pony tail. She’ll suffer for her art though 😂. Also an absolute pleasure to meet was Kim Tserkezie. Anyone who has kids will know her from Balamory. A very talented lady passionate about diversity in media. We were honoured she came along.

As guests began to gather I’d catch glimpses of myself chatting and hosting and think who the hell is this imposter. How on earth is she standing there when her knees are weak and she wants to run.

The call to take seats came and I headed down to the green room to work on my speech for free the play. I could probably tell you the script word for word I’ve seen it and read it that many times. I knew what they were laughing at without seeing the gesture or hearing the words. I knew the cast would smash it. I was nervous nonetheless.

2 cups of tea and some deep breathing I’d something that resembled a speech. Half time break and the cast came to join me. Alison still tearstained from reading the poem ”My boy and me’ what I can only describe as someone standing on my heart when I hear it onstage.

There’s a brilliant bond between everyone in the show. I watched the girls doing each other’s hair completely at ease with each other and it made me think they are forming friendships that will last. Just as the parents have. Great things happening on and off stage.

I braved the second half to watch from the wings. The laughs were loud and the sobs were heavy. The cast 200% knocked it out of the park. They were brilliant! I’m not biased – there’s are many reviews that will tell you the same thing. This play is worthy of ANY stage and should be seen on every stage.

Crap they’ve done their bows. Standing ovation, rapturous applause. It’s my turn.

I totter our and almost fall into the stage after tripping on the curtain. Just what I wanted.

I introduce myself as Christine Stephenson writer of this blog. I tell the audience about the horrific stats that accompany autistic kids/adults. Dire mental health services. Struggles, fights, trials and triumphs and also why it is crucial we make the film. I nearly cried. My voice wobbled but I pulled it back. I’m just desperate you see for everyone to understand.

Paul took to the stage to talk about TryLife from Howdon to Hollywood. How he got into filmmaking from working in youth services and certainly held everyone’s attention. The introduction to these guys is what will make this film stand out in the crowd. The vision for it is off the scale. I see awards and why the hell not.

Finally Rob Armstrong stood to address the guests and gave them a little insight into why he loves the project and why everyone should get behind us and make it happen. The Armstrong’s kickstarted our find with a 10k donation! Rob is a huge supporter of Hadrian School in Newcastle’s West End. An incredible school which caters for the needs of pupils aged between two and eleven years with a range of additional needs including complex, severe learning difficulties and profound and multiple learning difficulties. He and Bev get it.

Many guests pledged to sponsor a page of the film script (example below). An innovative way to raise some funds for us and you never know it may be worth a small fortune when those BAFTAS roll in.

The Hilton gave is an incredible prize of an overnight stay, drinks, spa, dinner, tickets to see Marvel, transport etc which raised £765! They also donated the bottles of bubbly. Big Thankyou Lynn, Janet, Toni and the lady who I didn’t catch her name (shameful) for selling tickets and being such an enormous help.

All in all I great success. If you were lucky enough to be invited I thankyou from the bottom of my heart for the love and support we have received since. I know it resonated with many. The characters and scenarios can be identified with so easily when you live The Life of Reilly in your own home. It’s time for change.

Alison who plays Joanne and who is also the writer is up for a culture award on Thursday which in itself to be a finalist is outstanding! then we have our ball on 1st June (ask me about last remaining table or 2) so not quite ready to relax for a second.

What a journey. Stress and laughter our guides.

Alison Stanley , Kelly Best – We’ve got this! Xx

#TryLifeofReilly

If you would like to support us with sponsorship or anything else please see the funding page attached. (There are offline donations to be added to this).

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

The Mams

The last couple of weeks have been incredibly busy.  Preparing for an invite only performance of Life of Reilly at Northern Stage, preparation for the ball on 1st June at Hilton, pre production film meetings as well as the other 2 million things I do to keep us ticking over with Reilly is keeping me on my toes so to speak.

Tonight was final rehearsal before the show.  I went along with intentions of watching but ended up sat with ‘The Mams’.  We drink tea, they help me with any questions I have and offer their help, they also lend me an ear.  We have built up a little comradery.  They are supporting their daughters but also us in the quest to educate more people.

We got on talking tonight about sleep.  I started to recount the days when Reilly was little and by surprise it made me very emotional.  I can look back now and see how far we have come.  Reilly was around 4 years old when my health visitor drove past me in the street with Reilly and turned around to come back.  I looked horrific.  I was barely functioning on around 3 hours sleep.  I told her I felt like I would die or have a nervous breakdown if I didn’t get some help.  Prior to this  Reilly didn’t just not sleep,  he screamed most of the night.  Inconsolable real tears and we didn’t know why.  He couldn’t tell us.  Was he in pain?, had he a nightmare?, was he frightened?, We had no idea.  Nights turned into months and even into years and we coped best we could.  Shane trying to sleep as he was up so early for work but spending much of the night as back up for me and taking his turn at swaying Reilly looking at the stars, something we would do for hours on end.  Ellis my middle son near moved in with my parents just to get some sleep.

At the time I felt like a massive failure.  One child I didn’t understand and the other didn’t want to be in the same house.  I was lucky that I didn’t have to go to a 9-5 job,  if I did I’d have surely been sacked.  I tried catch up when I could but chances were few and far between.  There is only so much your body will take before its says enough is enough.  I was at this point.  

A day after my chance run in with my health visitor  I picked up a prescription for melatonin – melatonin is naturally produced by the body to regulate the sleep-wake cycle. Its levels begin to rise shortly after nightfall, promoting sleep.  I was terrified to give him it,  Was I drugging him? Was I copping out? What would people think of me?  All the normal what if’s.  I can put my hand on my heart and tell you that without that run in I was indeed headed for a breakdown.

We’ve moved forward in so many ways.  Not thought about that grey area of my life for a long time.

We struggle but we’ve got this. Talking helps.  I’m lucky I have Alison & Kelly who have been there and bought the slightly different t-shirt but always on hand for advice.

To The Mams as I lovingly refer to them thankyou ladies for the support for The Life of Reilly and for me.  Appreciated more than you know. x

 

Negotiation

With my oldest 2 I could pretty much always guarantee swinging the odds in my favour. Be it a threat when they were little about Santa (yes I’m that Mam with his photo stored on my phone for when he rings) or work a trade off we can do X if we do Y first, if you don’t I’ll lock you in the shed with the spiders type of thing 😂

Jesus it’s a whole different ball game with Reilly! He’s having none of it.

“Reilly you cannot split bin bags of rubbish in the street” If he could speak I know he’d say “Watch me fool!”

“Reilly if you do that Santa won’t come”. He responds with a tap to his chin as if to say yes. He gives no shits.

“Reilly don’t you spray that”. 2 seconds later ….

“Reilly the door is locked you can’t go rifling bins”. He then hunts down a screwdriver to try and take off locks.

He’s like a cat. Does what he wants and when. He’s stubborn enough to train one.

The stress levels in our house this weekend are through the roof !

My question to you is how do you negotiate with your child? Can you negotiate with them?

As you know Reilly is non verbal or pre verbal I think now. But this goes out to all parents of autistic children.