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

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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

Safety First

Today I had the absolute pleasure of being able to help Reilly’s amazing school. I’d had a conversation with them before Christmas about how difficult it is when our kids are ill, communication being the main factor. When Reilly is feeling unwell he doesn’t tend to point to where he hurts, he doesn’t talk; he lashes out at me. His way of showing me he’s not happy. As a parent your main priority is to mend and make better – this is no easy task with Reilly. Then there’s the going to the doctors, the treatment, new equipment he’s never seen before, lotions, potions and medicine etc. It all needs explaining, he needs to be prepped.

We decided that new PECS cards to keep at home and some social stories would work perfectly to ease frustrations on both sides.

So today I organised for my good friend and amazing first aid trainer Chris Bull from FIRST AID NORTH EAST to come along to the school and teach some of us parents what to do when there’s an accident or emergency. As many of you know I’ve run a charity with my sister in law for the last 6 years and Chris has done numerous training sessions for us. He again gave his time for free to help today and I’m incredibly grateful. I learned a lot too. Each parent had the chance to focus on their main concern and ask lots of questions too.

It went so well we will be working with Chris further to provide future sessions of the same style.

** I’ll be posting a link to children’s first aid kits with these PECS cards attached in the next couple of days. Another great contact at JAX FIRST AID can provide them at a discounted rate.

“My first aid kit consisted of a liquorice allsorts tin from 1994 with 5 plasters some out of date savlon and some drawing pins. Not anymore!!”

12 years

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

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

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

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

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

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

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

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

Great things could be just around the corner xx

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

Nightmare – when I’m gone.

Bear with me its a strange one.  I can’t stop thinking about a dream I had last night.  I’m exceptionally stressed out at the moment and I think that may have a bearing.  The dream or part of it goes like this ……

I’m on a London double decker bus with my face pressed against st the window and I’m screaming and banging on the window.

Out of the window there’s Reilly around age 30.  He’s stood at a bus stop surrounded by a load of people.  He’s on his own and still non verbal.  He doesn’t know which bus to get and can’t ask for help and is getting upset.  I’m banging but he can’t hear or see me and I can’t get off, my bus pulls away.

God the tears writing this.

From what I can pull from the dream its my fears for his future and its rocked my core.  I know I’m not the only one, there are millions worrying just the same.

I’m not prepared for this.

How are you preparing for your child’s future or like me have you no idea where to start?

I’ll be looking into what is available currently to calm my raging anxiety about my boy which I will share.

What’s your greatest fears?

 

 

 

 

Kids in Crisis – my worries

I’ll go first.

Anxiety.  Depression. OCD.

I lovingly refer to them as my mental threesome.  Every single day I deal with an aspect of these 3, usually a combination of all 3 together as they all thrive off each other, one gives the other a leg up so to speak.  I hate it.  I’m jealous of people who have never been afflicted.  There is only one thing more terrifying than me suffering from mental health issues and that’s my children suffering too.

Panorama this week was Kids in Crisis.  Children with mental health problems unable to access the right help at the right time.  It broke my heart, not just for the children but also their desperate families.

You can watch it here Kids in Crisis – Panorama

We all worry about our kids well-being,  that’s our jobs as parents but knowing the scales are tipped in Reilly’s favour makes me sick to my stomach.  He’s already earmarked just by being autistic, for many autistic people  mental health problems go hand in hand such as anxiety, OCD and depression.

US study  found autistic people die at an average age of just 36.

36!

Why? well there are many factors that contribute to this.  Suicide being prevalent and also death by injury, drowning is a massive factor.  Autistic people are more likely to suffer from diabetes, heart disease, gastro problems, lack of sleep, bullying etc to name a few.

So where parents like myself go for help for our kids?

CAMHS Child and Adolescent Mental Health Services is the NHS service that assesses and treats young people with emotional, behavioural or mental health difficulties.   Kids in Crisis looked at the horrific waiting times that children have to wait to be seen.  The service is overstretched and rejecting more children than ever.  How sick does a child have to be before they get help?  suicide ideation, self harm, numerous suicide attempts?   Apparently so.  I have been in contact with people who have said they have had a brilliant experience with CAMHS but they are few and far between.  The reality is there are families in despair waiting for their children to be deemed ill enough to receive help.

Early help and intervention is crucial.  Years spent on waiting lists exasperates some conditions.  Conditions are allowed to escalate to breaking point where the child has become very ill indeed sometimes making numerous attempts on their lives.  Children trying to take their own lives.

A broken leg would attract instant help, why not our mental health?

These are my worries for the future and millions more families just like ours.  Mental health needs more investment NOW.  Speak up, speak out.  Not just for more investment –  1% of the current NHS budget just isn’t enough, but talking about mental health is a way to make kids feel like they aren’t alone.

Funding in the North East is being cut left, right and centre.  Counselling services in schools now considered a strain on a stretched school budget but at what price?.

How can we expect children to talk about mental health when everyone around them remain so guarded.

https://youngminds.org.uk/find-help/

https://act.youngminds.org.uk/join-our-fight-new-era-young-peoples-mental-health