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

 

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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

 

The Life of Reilly – Missed it? You missed out!

Yesterday was one of the best days I’ve ever had. You don’t hear that from me very often. The Life of Reilly play was on at The Northern Stage one of my favourite theatres. It was sold out completely and in hindsight we should have booked 2 nights.

Alison picked me up at 9am to take the props to the theatre. It’s not a big grand set, it’s actually an eclectic mix of household items pulled together to look like a well lived in family home with its assortment of discarded toys, washing and the odd bra.

I loved lurking around behind the scenes.  I did NOT love having to play Reilly’s part in the tech and rehearsals.  Standing under the spotlight reading out these lines to an empty theatre in my usual squeaky, irritating tone.  How do they do it?  Give me tonsilitus any day over acting.  I sat on a marshmallow teacake ready for the party scene, stood on another and trailed it around the perfectly painted pitch black floor. Page 28 of the script stuck to said marshmallow on shoe and followed us.  Awful.  I’ll stick to being bossy and irritating.  I did serve my purpose though and it was quite exciting despite epic cringe levels.

It’s old hat for Alison. Her last play Bedsock’s and Secrets about dementia was outstanding. It had a spell at the Edinburgh fringe as well as many theatre’s and was eventually snapped up by the NHS trust to be used as a training tool. She’s super-talented and has done an exceptional job here with The Life of Reilly – writing, producing and acting.  You know from the opening seconds that it’s been written by someone in the know and that just continues to gather substance throughout.  Real scenarios experienced by real people.  I have to admit I love the numerous ‘meetings’ between myself, Kelly and Alison discussing funny, heartbreaking, sad, happy; incredible things that have happened between us over a traditional breakfast (I’m sometimes Farmhouse because I’m greedy).  Autism Mama’s who get it, who live it and want you to get it too.

I love sitting in the audience watching peoples reactions to the play.  There is always tears, there is always some swearing (just a little bit), there is always laughter and there is always a standing ovation (I know it’s just the second time it’s been done shhhhhh).  The tech guys even had a tear at the back of the house.

Now i’m not being biased.  If I had seen this produced by any other company I would give it the best review and the highest star rating simply because the acting is brilliant, it is an accurate portrayal of many of our lives (see ‘Joanne’ politely discussing the school transport issue with the Council)  We’ve all done it.  The characters are lovable even the old bag Granny Mary and it educates most importantly.

Between acts 1 & 2 I talked to people to gather their thoughts.  They were blown away.  I talked to a lady sat on her own at the back who had bought the last ticket.  That lady was a GP on the Northern Stage’s mailing list and on seeing the content thought she SHOULD see it and I agree.  Every GP, teacher, police officer, nurse, therapist, social worker, teaching assistant, sibling, grandparent – you see where i’m going with this.

It’s a small cast and it works perfectly.

We have Kris Roberts who plays Reilly.  

Kris plays it so well you can feel his struggle and vulnerability as a child but his humour shines through in just the right places.

Alison Stanley plays Joanne Reilly’s Mam.  

Fierce, reads everything, challenges everyone and takes no shit.  Joanne is me, Joanne is every Mam that knows what an EHCP is, Joanne is every Mam that lies awake at night wondering what happens when she dies.

Steve Woods from Act2Cam plays Ged Reilly’s Dad.

Ex military turned doorman who fears he isn’t good enough and keeps his fears and emotions bottled in.  His parts break my heart in two.  If you know Steve you know why.

Marce Gaygaskell plays Granny Mary.  

Sarcastic, blunt without an ounce of empathy.  I find her parts hilarious and she has some of my favourite one liners.

Warren Simpson plays Clarkey Geds best friend and fellow doorman.

Tries his best and puts his foot in it everytime its open.  Prone to the odd swear word, a can of red stripe and a pizza.

and then there is Scott Ritchie.  

We auditioned for an actually autistic actor to play Reilly’s friend Craig, we did that because it makes sense and because well we scream for inclusion yet hadn’t included ourselves, the cast have learned from him and his opinion has been invaluable.  He did an amazing job of which he should be extremely proud.  I would not, could not have the courage to stand on that stage and lay bare how being autistic makes him feel.  How he feels it through the fibres in his clothes, on his skin, to the bones.  Scott even had some amazing video messages of encouragement from amazing actors Morven Christie, Richard Mylan, and Kacey Ainsworth.

I know Alison will be looking to work on more projects with actually autistic people – there’s some incredible talent there.

Their characters progress throughout the performance with understanding and acceptance that their lives are the same but different and you will love them all, including Granny Mary.

When the play ended there was a standing ovation which was truly deserved.  I feel like the audience really feel like they’ve been on the same journey.  To be fair a lot of the audience already have or are going through it now.

So we love it, the audience loves it, the guys at the Northern Stage loved it so it would be only fair that it happens all over again.  Please watch this space for the next date.  You will not be disappointed and I will guarantee you will learn something.

Autism isn’t going anywhere.  Why should autistic people have to take years to learn to adapt to fit in what is perceived to be typical. To surpress how they want to express for fear of  persecution because it’s not ‘normal’.  WTF is ‘normal’ anyway.  Understand it and be more accommodating as humans.

Proud to be a part of it all and thankful I have these people in my life.  xx

 

 

 

 

Flying solo

I’m back from my few days away with the girls!  I had the best time I can’t even put it in to words.  I felt safe and relaxed those two concoctions don’t come around very often.

When I received Reilly’s autism diagnosis I thought these times were over.  As an established anxiety sufferer and now the added worries for Reilly I never thought I would have the courage to fly solo.   I lost my Grandad on the morning I flew.  He has been ill for a long time and pleaded regularly  to help him on his way.  A horrific time for my Mam and her brothers.  I felt I should stay and support my Mam who was having absolutely none of it.

I arrived at the airport with the girls armed with diazepam, just in case.  I didn’t take one and I was just fine.  I have laughed more in three days than I have in three years.  The only time I wavered was when Shane posted photographs to social media of Reilly.  I felt a pang of guilt that I should be there, I wanted to have my nose buried in his hair but a serious word with myself and reminding myself of the fact that he is going to be there doing exactly the same things when I get home and all was right again.  I have a husband and friends who do not have that chance – a reality check is all that is needed about how lucky I am.

The time I spent lounging on the sun lounger soaking up the sun is as beneficial as any medication I’ve ever taken.  It’s essential in fact.

I was ‘evicted’ from the villa on Wednesday and sat pondering in the airport waiting to board the flight.  Could I have stayed the extra couple of days with the girls?  Damn right I could have.  Reilly was absolutely fine with his Dad.  He seems to just switch modes when the other is not around.  I often wonder what his concept of time is, I still don’t have the answer but what I do know is our reunion was not the teary, Reilly running opened armed to his Mam who scoops him up for a cuddle.  I surprised him by shouting through the trees in the park,  he stopped for a second and did a quick glance, I jumped out and he changed direction and went up the nearest climbing frame.  I was absolutely gutted ha.

Next year the full duration with the girls abroad?  You bet it will be.  Let’s have some of the old Christine back, loosen those control reins a little and realise the world still turns without me.

RIP Grandad Billy

RIP Aunty Jane who absolutely loved this blog and Reilly’s adventures

xx

 

 

Sunshine & Richard and Jaco

Yesterday I decided to just spend some quality time with Reilly letting him lead the way and seeing where it took us.  It took us to the skate park on a beautiful sunny day.  My mind was still buzzing from watching The Life of Reilly the night before so a welcome bit of time out to process it all.  The feedback we have received from autistic people, families of autistic people, teachers, SENCOs, theatre goers in general is outstanding so there WILL be more showings of The Life of Reilly and I think it could be groundbreaking for public understanding. Let’s hope so.

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I always take my camera along on sunny days and this morning I sat down to edit my photographs while watching Richard & Jaco – Life with autism.  I stopped editing photos and became engrossed after 2 minutes.  Richards fears resonated with me as a parent of an autistic child, my biggest fear is what if I die closely followed by how will he cope as an adult. I think one of my most popular posts was Grim. It still keeps me awake at night and I can’t imagine it will stop anytime soon.  Please give it a watch – education, stimming, employment, independence, fears and love.  It’s fantastic.   Richard & Jaco – Life with autism (will be available to watch again soon will post the link). 

Love this boy and how he comes at life with this fierce yet vulnerable nature.  Not so much love for piggy back home with scooter, shopping, camera bag a bottle of pop and two chip butties ;).

#samebutdifferent

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Sew kind

I love nice people so I decided to write a blog about one.  I’ve never even met this lady.

A little while ago Kelly my sister in law commissioned some handmade bears to give all the family as a surprise.  Not just any bears.  These bears were made from my late brothers clothing, his friends and family will recognise one of the patterns in particular.  I love mine.  He sits on the shelf in the living room and I always give him a quick glance.  Reilly loves him too and does occasionally lock him in our bird cage ornament,must be that one visit to the Zoo at the Lakes.

I think it’s a lovely craft and brings a lot of happiness to bereaved families.

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The ladies name is Caroline Chapman and she appears on most streams of social media as Carrie’s Thread Bears.  Since receiving my bear I messaged Caroline to say thank you and stayed in touch ever since.  She loves Reilly’s blogs and I cheer her up with my John Rocha posts, he’s my twin. She is my biggest fan (I think I look like John Rocha and pretend I am in him in various photographs, you have to be there) for example …….

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Bastard freezing and me flint’s knackered.

Anyway today I received a present through the post.  I love it, not just because I like gifts but it’s nice like receiving a written letter instead of a typed one.

Inside the package was this little beautiful tooth fairy cushion for when Reilly starts to lose his teeth.  You put the tooth in the little pocket for safe keeping while under the pillow and replace with a coin or whatever, good news for us parents is the pocket is small good for a pound coin and no fivers!

What a lovely gesture.  Even more lovely that I know she’s been unwell and is supporting her sister through chemo.  Absolute star and i’m super grateful. 

By the way how the hell do we explain losing teeth to our autistic cherubs?  New one for me to read up on I think.

Take a look at some of her great work you’ll be impressed xx

https://www.facebook.com/CarrieThreadBears/

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Toilet Time – celebrating our first poo

So Reilly has had a poo on the toilet!  He went himself, he didn’t ask for help; he just did it.   I was sat on the bed waiting for him and could here the canny little rabbit drops and I felt really proud, he’s 6 in July and I had visions of it never happening to be honest.  It coincides with us buying  him a book that was  recommended it’s called Ready to Go Toilet Time.  They do one for boys and one for girls and i’m so impressed I thought I would share it with you.

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It’s really well put together in a hardback folder.  It comes with a hardback book, a toilet training guide, 2 sticker charts and some stickers.  It’s neatly packaged and really well designed.

I’ve read through it a few times with Reilly and he likes the fact that there are pictures of toilets and underpants. One of the posters is a dinosaur which you fill in his spots with stickers, filling up nicely as this is no problem for Reilly and the other is of a train, yes it only has one sticker but I chose the train for number twos because I see that as more of a journey. Its called the poo poo choo choo if you are interested.

These books aren’t special needs specific and would help with anyone struggling or just starting out toilet training. Defo worth a shot if you are nearing growing out of the 6+ pampers.

You can buy here: