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.

What would we talk about my boy and me?

It’s my birthday I’m 46 and feel 90!! It’s bittersweet for reasons many of our friends will know. ❤️

Shane took a day off work so we could grab a few hours together child free. Trip to the metro centre for some new make up, god knows I need it and some Lebanese food. Perfect.

Home just in time for the kids arriving home. Reilly as per usual throws his car keys at me which means let’s go mother and I always oblige. I asked him where he wanted to go and usually he would grab my phone and type it in. It’s usually in no particular order Airbox, Burger King, Spar, skatepark or Ace Playce. I need season passes for all of them. This was his reply today ….

Now what can I say about this. I drove away feeling incredibly emotional. I’m always told accept him as he is. I do but god I want to talk to him. There’s a pit in my stomach that aches to have a conversation with him.

What would we talk about? His enormous hate for undercrackers? Why he puts his chin in my eye socket when he’s trying to fall asleep? Why does he headbutt the wall when we try and wash his hair and slam his knees onto the bathroom tiles with such force it cracks them? What is he thinking about when he roars in spontaneous laughter? What’s his favourite song? Why always vanilla with a flake? Why is the food always beige? Why the back seat on the right hand side? Why’s he terrified of The Lion King? What’s his favourite colour? Does he like school? Why I can’t drink a cup of tea? Why he’s never cold or the attraction of the sea? The list is infinitive. There will never be a question that doesn’t need an answer.

Today I saw progress and I felt hope. I’m happy. Today is a good day ❤️

Sign of the times

Been to the beach with Reilly tonight. He didn’t want to go to school this morning but I promised him when he came home we would go. Sun was shining and why the hell not!

He came straight home and emptied his school bag and packed it with essentials. Today that was a spoon out the kitchen drawer, the cup that holds the toothbrushes, suntan cream, a towel and his shorts.

We are incredibly lucky to have our beautiful coast 10 mins away. I love the sound of the sea it so peaceful until we arrive and the air is pierced with “Reilly that’s not your ice cream” “Reilly put that back” “Reilly not past your knees” “Reilly put your pants on”.

He loves it. I don’t care what others think. I made an observation tonight though which is important.

Reilly has a moment while we were there. He was starfished, pardon the pun, screaming, I couldn’t stand him up, pick him up or carry him. People look. Doesn’t matter if you are in a supermarket, on a bus or on a beach. I don’t care. I’m five years in. Someone irrelevant judging for a brief moment in time is not a battle for me. But those new to the journey wanting the quicksand to swallow them up what about them?

I’ve learned that judgement stops the second they see us signing. Literally from grimace to grin from urgh to ahhhh. Because they can see it. They go from throwing evils to being in awe of this beautiful boy. If you don’t know Makaton there are millions of vids on YouTube. The girls in our local Spar are picking up on Reilly’s for ice cream, please, thankyou etc

Next time your in a spot and feeling overwhelmed whack out some Makaton and watch the judgement shift. I guarantee it will. Failing that show them the finger and crack on regardless ❤️

Taxi Driver

For most parents their kids will go to their local school, certainly where we live its an approximately 3 minute walk from my house.  Biggest nightmare is that it’s raining or that you have to carry a scooter.

For us it’s really stressful.  Reilly gets transport to school so has a driver and an escort.  We’ve had a few over the last few years and the most recent escort we are really comfortable with. Reilly likes him which is huge.

When your child is non verbal or doesn’t communicate trust is an enormous issue. I’ve written before about leaving no stone unturned while investigating drivers and escorts before meeting Reilly.  Checking social media, local online news etc (I’m not kidding).  Ive probably snooped on their cousins boss at one point looking for anything that could set alarm bells ringing.

There is currently no legal requirement for the escorts (or drivers) to know anything about autism.  It is a recommendation but not a requirement.  This doesn’t sit well.  A meltdown can be terrifying for the child but also the person responsible, surely to have some awareness of what may cause one and how to help during one would be beneficial for all parties?  So many potential triggers that you wouldn’t dream of in a taxi – air fresheners, radio, other kids, seating positions etc.

This morning I heard the words I have been dreading. “Hi Chris just to let you know tomorrow is my last shift”.

Shit, I’m gutted.  I’m so stressed.  Reilly may love the next person, he may hate them.  Who are they?  I have no idea and its terrifying.

I created this petition recently and would be really grateful if you could sign it and share it.  Having taxi companies taking part in an awareness session as part of the terms of a councils tender would be incredible.

 

 

 

 

 

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

Look at her …

You ever catch people looking at you like you’re an extra from The Walking Dead. I have a few times in the last week. Im sure I used to look half decent a decade ago.

Some days I swear I have no idea how i’ll make it to bed time. In a bid to TRY and help myself I chronicled my day. Im looking for ways to kick in some self care. I need it.

Not for your sympathy, for your understanding.  Understanding of why I haven’t replied to that text, opened that email or made it out for that meal.

6.20am alarm goes off.  If Reilly has had more than four hours sleep this is considered a win. I snooze it until 7.00am when I slip my phone which is playing Mickeys Twice upon a Christmas under his pillow.  If you just wake him you’re asking for bother, gentley gently catchy monkey as the saying goes.

I wake Ellis up. I go downstairs for a wee, can’t be done upstairs if he hears me he will stand IN the toilet and flush it and scream for at least 20 minutes.  I’d rather wee in the garden than face that. (I don’t I use the downstairs loo). I can’t flush it, another trap.

I make 2 slices of toast, cut off the crusts, spread with nutella and cut into 8 equal pieces and join them back up into squares. I make a cup of tea sneak a gulp then hide it.

I wake Ellis again. I put Reilly’s uniform on the bannister then cover it with a towel so he doesn’t see it when he goes for a wee.

I turn the volume louder on my phone and he sits up to watch it lured by his toast like a bisto kid.  I see to Ellis and make sure he’s set for the day, he hides his breakfast and wee’s exactly like I do bless him.

7.25am and Reilly struts back from the bathroom like King of the North, he’s been first, he wins, little does he know. He lines up his cars to match an exact scene from Cars 3. This is the moment. I have half an hour before his taxi cones – I’m going in. I produce his uniform.

He squeals and hides under the covers but with some coaxing and some distraction I have his right sock in place by 7.35. Always the right sock. God forbid left goes first. 7.40 I have 2 socks and a pair of trousers, right leg first, no buttons or zips, labels removed. 7.45 and I’m pleading for the T-shirt to stay on. As if by magic today it is, no flushing it or hiding it its on hurrah! 7.50 right shoe first, left shoe, coat on we are cooking on gas this morning.  Taxi comes I run for his bag come back and the shoes are back off and he’s ramming his coat behind the chair.

8am I wave him off down the street in his mini bus. He’s happy now he’s on there. I scrat about for change for Ellis, he’s missed his bus and I need the bank machine for his dinner money so on with my shoes, PJs still in place, not a brush through my hair or even a rogue finger wipe beneath my eyes to remove the remains of the day from yesterday, I’m a state but to be frank I don’t care.  I drop him at school and get home at 8.30.  I make another cup of tea, burn my toast, make some more and watch Bake Off.  My fave time of day.  I LOVE being in the house alone.

9.30 I try and catch up on charity stuff, I pick Kelly up, drop her in Lemington then drive to Low Fell to drop off a defibrillator cabinet.  I pick her back up and we work on the charity ball over dinner.  We also discuss The Life of Reilly play amd film with Alison.  1pm up to the office for more charity work. Home at 3.20pm just before the kids come home.

Prepare teas. No one eats the same or at the same time as its impossible.  Have I mentioned I’ve been having allergy testing? I’ve felt not right for a long time now, going back years with aching joints, having flares where I can’t fasten a shoelace or zip up my coat. I’ve found put in the last week I’m allergic to so many things that my eating, drinking, sleeping etc all has to change. I’m allergic to my mattress, bags for life, diet coke, milk, wheat, oats to name a few. This doesn’t fill me with joy and makes meal times harder –  like I need that. 1 week of no antihistamines while testing has ruined me and my skin.  They are even testing whether I’m allergic to myself!

I’ve forgotten my prescription at the chemist because my head is a sieve and ring Shane to collect.  Reilly types spar into my phone every 10 seconds so we nip out to get him his fave icecream. Double Corbet no sauce and a flake.  Last week when I went the machine wasn’t on. I could feel the colour draining from my face at the realisation, amazing what you can build yourself though under pressure.

Back home and while I get Ellis’s tea Reilly empties a bottle of water on the living room floor, takes the lids of the toilet cisterns and fills them with coins out my jar.

I eat my tea sat on the stairs so I’m close enough to hear him coming to catch me that I can leg it. We learn some new signs, I love Christmas being his fave at the min. He goes upstairs to watch planes, thank the lord 5 mins peace.  I make Shane’s tea for him coming home and hang out the washing my mam has very kindly put through.

I arrange some first aid training for the parents of Reilly’s school and work on some visuals to go with it.  I laugh til I cry at the photograph of myself and Kelly in the co-ops Christmas food mag. I’ve never looked so rotten holding a sweet mince pie that I can’t eat because I’m allergic.

Reilly’s spends the next hour draped around my neck going between trying to lick my nose and switching The Apprentice off at 30 second intervals. We deal with issues he won’t thank me for discussing in 10 years time but trust me its messy.

Its 8.30 and he’s bouncing on his bed which I’m now allergic to and I’m praying he’s going to sleep tonight. I’ve spoken at least 4 sentences to Shane since he came home and probably won’t be much more other than good night.

Homework, uniforms, washing, dishes, the normal stuff. The stuff I’d love to have to worry about but the stuff that pales into significance in this extraordinarily busy life.

So if I haven’t replied to your message I’m sorry. Actually I’m not – unless its a free spa day and I’ve missed it.

How was your day?

X