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.

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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 Life of Reilly Premiere was a success!

So the premiere was an amazing success!  I have never been quite so terrified in the days leading upto the event.  Will people like it, will people turn up and watch it, will people want to see more, what the hell will I say for my speech, why wont Reilly sleep for more than 4 hours this week?  Will Alison kill someone?  I could go on.

A lot of people who couldn’t make it (thankfully they didn’t as it was fit to burst) have asked  for more information about the ideology behind it all so here goes.

The short film was made to hi-light the distinct lack of support for families by the powers that be.  My greatest support comes from other parents, my actually autistic friends and Reilly’s teachers/school.  We have some incredible schools in the area unfortunately there are not enough places for our kids and many are shoehorned into the wrong environments.  It causes massive problems.  We certainly had a fight on our hands to ensure Reilly could get the education he deserves and is entitled to, we are not alone in that.

The film is a short and will be entered into short film festivals and used as a hook to try and secure funding for a feature film.  The short film which  you can view or download below for a very small fee (proceeds towards feature) looks at an ordinary morning with an extraordinary family.  How easy a life of rigid routine can become absolute chaos when the wrong transport arrives.  Transport can be a massive headache for SEN familes .  Alison Stanley who plays Joanne and also wrote the play The Life of Reilly and Charlie Price who plays Reilly do such an incredible job at really making the whole scenario hit very close to home.

The feature film which is already in writing will follow Reilly from conception, well actually just after as it won’t be an 18, right the way through to young man.  It will all be based on real life events and I can ensure you will be witty, entertaining, heartwarming with a little touch of heartbreaking reality I am sure many will identify with.  The film will most certainly call out the problems Reilly and others like him face on a daily basis.  Autistic actors, crew and consultants is a given for the feature film too.

We need this.  We have a chance to reach a huge audience and squash those myths, promote inclusion and to be frank get people to stop acting like dicks around these families making all our lives a little easier.  It’s about being human and education as I said on the night and I quote.

I’ve been that person rolling my eyes at the parent standing over their screaming child in the supermarket.  Mine would never do that! What a fool I was.  Thats what I saw a parent with no control over their child.  What i didn’t see was a child overwhelmed by their surroundings – of sights, smells and sound.  What I didn’t see was a parent desperate to just blend in, a parent desperate to help their child and get out of that situation.   I judged because I didn’t see.  I didn’t understand.

If you were there on the night you would have been lucky enough to hear a speech by Kieran Rose The Autistic Advocate.  It was incredible.  I hadn’t had a sneek peek at what he was going to say before hand and it really blew me away.  Focus was on responsibility to ensure the narrative is right.  Ill post Kieran’s transcript up in a separate blog post as it deserves its own platform.   The Q & A after the film with myself, Alison, Charlie, Scott and Kieran promoted some excellent discussion and enabled many of the audience to quiz Kieran about being actually autistic and Scott’s take on being an autistic actor.   Charlies answer to how was meeting the real Reilly melted by heart.  He’s an incredible kid and I know for fine fact we will be seeing so much more of him.

So please support us take this to the next level.  Take a look at the short film and please send me a review of your thoughts.

A massive thank you to everyone who took the time out to attend on Wednesday it means the world to us and  to every single person who donated, came to Reilly’s fundraiser, gave their time to help raise funds and those who shared our posts and helped spread the word.

Alison Stanley, Charlie Price, Chrissy Rock, Andy Mills, Scott Ritchie, Stephen Woods and the whole clan from Act2Cam.    Thankyou for a great experience.  I look forward to many more breakfast meetings with Alison & Kelly plotting the next. Got lots of exciting things in the pipeline.

Did I ever think i’d be hosting a film premiere and listed as an Executive Producer? Hell no. 

Did I think i’d be trying to make a difference for my boy?  Hell yes and will continue to do so. 

The Life of Reilly from ACT 2 CAM

 

When Reilly met Santa 

Did some Christmas prep this afternoon with Reilly by taking him to see Fenwicks window in all its Beatrice Potter finery.  Ellis missed this trip out claiming our outing to be utter crap.

We got out the car which was parked behind the City Hall and just emerging from the side door was the finest Santander I’ve ever seen!!  Unsure Reilly kept walking but changed his mind a little further down the street and went back.  Santa swiftly dropped his tab and beckoned Reilly to come closer asking if he’d been a good lad this year in broad geordie.  I gave him the he can’t talk whisper and I saw a little glint in his eye that he keeps for special occasions then proceeded to tell me his grandson is autistic too. Gutted no photo but not something I’d cajole Reilly into he leads the way on who gets in his personal space not us. 

Reilly s interest lasted approximately 20 seconds before he attempted a stage invasion via the side door. 

Rounding the corner onto Northumberland Street all the lights were on and a bloke playing careless whisper on his trumpet,  perfection! there was a massive queue to see Fenwicks window no way were we standing in that so we nestled in a tiny gap that had formed while another family were delayed moving on with excess ooohing and ahhhing. 

Face flat against the window he took in the scene long enough for me to take a photo and he was off.  Zero interest.  
Such a good lad though today despite a couple of breaks for freedom trip was a success.  Even a look in the Disney Shop and left without a purchase! 

Visiting a reindeer is next on the agenda.  Slowly slowly catchy Christmas. 

Social Butterfly

Great afternoon with Reilly today.  Im seeing such an improvement in his social skills.  Not that long ago he would growl like a lion at anyone daring to glance in his direction.

Out the taxi from school and straight into my across the road neighbour’s for a look upstairs, play in the conservatory and help with the hoovering.  It’s a good job they read this blog and understand lol.

Working out how much I had in my purse and whether I could handle the bus stop shenanigans today I decided I would go visit my friends the Travelling Willbury’s Clare & Dave in their new home in the next estate, (had no idea what number but had seen a photo so just thought we would wing it, would just blame Reilly for ringing the wrong doorbell).

Their son Hadyn is just a few months younger than Reilly and their last encounter saw Reilly lock him in our conservatory.  Not today though Reilly was super social, playing with toys, holding Hadyn’s hand, by choice and leading him around the house looking for mischief – absolutely brilliant to see.  I only saw a flicker of a reaction to Dave’s cough and he moved on.  He also asked for Dave’s hand to go upstairs.

Massive improvements from my little man!   Hadyn was a little unsure at first when Reilly didn’t reply to any of his questions but this didn’t deter him and I quote:

Because Reilly hasn’t found his voice yet he can share his.  

Trust me he has plenty to go round so i’m happy to take the spares lol.  The featured image for this post is them as littlies,  still makes me laugh years on.

Children are so inquisitive about Reilly.  We really need to get to work with Really Reilly and get it into primary schools as soon as possible.

It’s amazing to see Reilly interacting for years he stood on the sidelines and just kept himself to himself.  But I see a different Reilly emerging.

Currently in bed in full uniform and shoes watching Thomas.  Life of Reilly that lad!

 

 

Reilly’s big day out!

After a stressful morning playing Columbo and not much sleep we decided to make hay while the sunshines and pay a visit to Exhibition Park in Newcastle with Reilly.  I was astonished to find that when we turned into the same road that houses the RVI hospital Reilly didn’t get anxious.  Usually approaching this part of Newcastle City centre he has a wobble.  Obviously a throwback to his treatment there a couple of years back.   We also met some great people in terms of autism understanding.

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He loves watching the skateboarders icecream in hand, me not so much.  I fell off one when I was 30 trying to be a cool Mam and broke my leg in 4 places so I ushered him past quite quickly, I don’t mind him sitting on one in our living room but thats as far as it goes.

I love Exhibition Park filled with people lying around sunbathing and eating picnics and Reilly thoroughly enjoyed playing in the park, walking round the lake and a quick nosey inside the Wylam Brewery the young lady behind the bar was fab with him sat at his barstool when we explained we were just in to settle Reilly’s curiosity.  Ill be back though minus kids because it looks tremendous! The food, the drinks – everything!
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Next we went to the Hancock Museum.  I was a bit scared i’m not going to lie.  I swerve places where a scene is inevitable but it was literally 10 steps away and we thought we would give it a try.  The lady on the desk told us that there are autism sessions where they open early and its not so loud etc and passed on the details for the lady to arrange attending, I like that, I like inclusion.  I want him to see T-Rex bones and pieces of ancient Egypt it’s part of childhood!

Unfortunately he had one favourite place in the museum, my least favourite place and I had to sit next to them for too long.  He loved the snakes!!  

All I could see was Harry Potter bricking it once the glass smashed! god I hope he’s not fluent in Parseltongue.  I already resemble Snape on most days I can do without any other similarities.  I’m in Gryffindor all day never a Slytherin. 

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He loved it and stayed way longer than we anticipated.  Homebound and a stop in at Sainsbury’s at Gosforth where it was no problem for Reilly to continually put his card in the card reader and the lady behind the counter couldn’t have been nicer.  Success.

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Great day out.

Home, naked, watching Thomas and bouncing on the bed for the rest of the afternoon (Reilly not me). Hoping for an early night and a shirtless Poldark.

Loved today more like this please.

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About a boy

Yesterday we headed into Newcastle for a night at The Copthorne Hotel on Newcastle’s Quayside courtesy of the fabulous Jeff & Lesley Armstrong.  We had a fantastic time,  I miss my one on one time with Ellis so much and it is essential I grab it whenever I can.  He is amazing company and his crack in unbelievable.

We had some lunch, walked along the Tyne, took photographs, looked at baby phototgraphs on the laptop, discussed dabbing, gave a homeless man £2 (Ellis’s choice) and talked about everything inlcuding which floor is best to be on if a hotel collapses and the skills of the F2 Freestylers.  It was perfect and I am eternally grateful to have been able to do that.  I also got the chance to think,  something I try not to do very often as it usual ends with anxiety or something to take up more of my time.

Watching Ellis asleep last night, happy and cozy made me realise how lucky  I am.   Whattt not having that she’s feeling lucky and happy queue the anxiety, the bedtime bastard that visits just as you are snuggling down.  Thought I might have left him at home but no he must have jumped in on the way out the door and my specialty anxiety topic at the Copthorne was guilt.

  • Guilty that I don’t have enough time for my lads.
  • Guilty that we don’t have enough money even though Shane works like a trojan but I can’t.
  • Guilty that I can’t do more.
  • Guilty that Shane and I never spend any time together.
  • Guilty for spending time with Ellis knowing Reilly may be melting down at home (he didn’t, he was fine).
  • Guilty for spending time with Reilly when I should be with Ellis.
  • Guilty because I couldn’t see Alex’s band play last night because I was with Ellis.
  • Guilty that I’d rather sit on the settee than go to the park.
  • Guilty that I wish I had an easier life.
  • Guilty that I do have an easier life than many.

Just the biggest ball of guilt in guilt town basically.  The list could be as long as your arm to be honest.  But I came to a conclusion last night.

That conclusion was you know what, actually fuck it!

I can’t do anymore its not physically possible.  I could be better organised and that’s something I will have to work on.  For now I’m happy watching boy knocking out peaceful zzzz’s in a beautiful bedroom while I watch the lights bouncing off the Tyne and the trains passing by outside,  this is one night anxiety is not getting into bed with me;  so with a swig of my soya milk tea, a bite of my GB Cupcakery brownie (vegan – to die for),  a sniff of Ellis’s Rocky Road and some much needed mindfulness I actually drifted off.

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Ellis and his Rocky Road!

We had an amazing time.  Ellis needed it.  I desperately needed it. I can’t wait til we can do it again and I can repay Lesley & Jeff for their incredible kindness.

Needless to say when Shane picked us up Reilly legged it into the hotel and pressed all the buttons on the lift and I carried him out screaming.  Business as usual but batteries recharged and ready.  Love my boys xx

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