Shear(er) delight!

Recently I had the absolute pleasure of attending the Alan Shearer Centre with local group SPARCS. I’d never been before but Reilly is a regular and has attended many times with school to use the hydrotherapy pool.

Its fully accessible for those with limited mobility and located just off the A69 its set in over an acre of beautiful grounds complete with woodland walk, sensory garden and specially adapted play area.  A hidden gem.  Plenty of seats and perfectly kept lawns for those budding number 9’s to have a kick about.

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Inside there is so much to do.  The ladies on the reception were incredibly helpful and enrolling Reilly as a member took all of 2 minutes, membership and use of the centre is FREE.

Reilly loves all the sensory activities the centre has to offer and was very welcome for a cool down on an incredibly hot day.  I love watching these incredible kids at play.  Fascinated, focused and happy. I also love watching parents, grandparents and carers being able to relax, without judgement in a place they feel very welcome.

 

 

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While there I arranged for Reilly to visit the hydrotherapy pool in the summer holidays.  It can be booked for sole use in hour sessions which is perfect for and the general public who don’t need to be subjected to me in my cozzy.  We’ve chosen to share that date with Kelly and her little one, Kelly is one of the fab parents I met when talking about Reilly’s blog at a coffee morning earlier in the year.  I always get so stressed about keeping Reilly happy in the holidays,  I see a lot of time being spent here in the summer, even a cafe so no need for soggy sandwiches and warm pop.

 

It is well worth checking out SPARCS who run meet ups for autistic families at some excellent places around the North East and of course The Alan Shearer Centre and all they have to offer.  As well as the activity centre they have The Alan Shearer Short Break Centre and The Specialist Residential Home.

Check it out and if you see us there make sure you say hi!

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 short film

The trailer has landed and I couldn’t be happier!

If you want to see the full version then come along to the premiere on 13th June at Tyneside Cinema Buy Tickets  you wont be disappointed.  There will also be a talk from The Autistic Advocate, his blog posts blow my mind with his incredible insight on autism.

I loved being on set for this.  Charlie Price and Alison Stanley make for the most perfect Mother Son portrayal.  My mornings pretty much go like this. I feel a bit sorry for myself and Reilly watching it. The short film hi-lights the importance of routine and what can go wrong when you are failed by the system supposedly supporting you.

It’s tense, it’s real life.  You may see yourself in Alison’s character Joanne and you may see your child in Charlies incredible acting as Reilly.  Autistic actors (Scott Ritchie looks fetching in his dressing gown as the nosey neighbour) and crew were included in this film which is important to us.  Crissy Rock is an excellent taxi escort, her face speaks a 20thousands words, usually sweary,  along with her disinterested sidekick driver (Andy Mills), slightly bewildered by what shes been met with on an ordinary morning with an extraordinary family.

Loved being part of the Act2Cam experience.  I genuinely had no idea just how much work goes into producing a short film.

Music is North South Divide by The Longsands 🙂

 

Please  support us.  There’s so much more to do and we have a platform to educate and entertain to a much wider audience.  This is just the first step.

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The Life of Reilly – Official Trailer from DoctorChas on Vimeo.`

 

Beach Life (of Reilly)

We’ve had a lovely day at the beach.  I made some observations about Reilly today.

  1. It doesn’t matter whether you are playing a beach based sport such as footy, cricket or rounders Reilly will sit on your goalpost, move your wickets and throw your ball in the sea.
  2. Reilly will enter any beach tent shade thing without consent and have a lie down.
  3. Reilly will claim any bucket and spade as his own despite small children’s wails of discontent. He gives no shits when I say Reilly that’s not yours, in-fact it encourages him to run faster.
  4. Reilly will join your BBQ without an invitation and will eat any bread type food you have kicking about, he is also partial of a slurp of random pop left unattended.
  5. Reilly will attempt to mount your body board or surf board regardless of whether you are on it or not.
  6. Reilly gives not one f@ck about any of it.  Oh to be that free.

Great day rounded off with some chips and an icecream.  Met some lovely  adults today who were intrigued by him.  Their kids and grandkids not so much haha.

Love him.

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Finding Reilly

What a difference the sunshine makes! Tonight when Reilly came home from school he typed Dory fish into my phone and  instead of looking at photographs of them I decided to take him along to the Blue Reef Aquarium at Tynemouth.

We’ve  drove along with the windows down and the sun beaming in, just perfect.  Reilly has never been to the aquarium before but I showed him photos of the outside and some of the exhibits and he was really excited.  First thing he did was go into the shop and purchase one of those fishing rods with the magnetic fish you throw in the bath, straight to the massive open tank in the foyer and started to rip it open, they were going in!!  Just stopped him in time.  Lady on reception was lovely though I must say.  There was no-one else there as we got there late in the afternoon so place to ourselves.  Happy days.

IMG_2845I expected him to wonder at the fishes and be intrigued.  He gave no shits about them whatsoever.  He did however enjoy watching the seals, I mean who wouldn’t.  I took some photographs while we were there and they look like he is in some kind of magic undersea utopia.  Beautiful greens and light.  I must go again a little better prepared with lenses etc and plan some photos properly.

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The otters enclosure smelled worse than I imagine an otters pocket and we hastily ran through that bit.  Reilly and smells, particularly really strong ones is a no go.

All in all it was a lovely afternoon he showed me a picture of a sausage and an icecream on my phone so we left in search of a nearby chippy.  We kept driving, the sun brought hundreds to our beaut coast this afternoon and it was just amazing to see.  Ive not seen people headed to the beach complete with towels and windbreakers for decades.  I loved it.IMG_2829

Back at our local chippy we sat outside on the bench and Reilly listened to the ravey version of the Moonpig advert a million times.

Love the sun, love my sons, its a good day xx

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A right tit. Literally.

I’ve not written a post in a little while.  The charity is crazy busy and the life of Reilly play, film, plans are matching it with hours consumed at the minute which is good, I think but my head has also been elsewhere. Distracted and anxious.
For the last few months I’ve had a niggle in my right boob.   I have literally felt a right tit numerous times a day over the last few weeks, something feeling just not right. Its probably nothing. But as a mama probably isn’t enough so off I went to my GP with Shane in tow to talk about it. We shall see what becomes of it, probably nothing but I can’t afford to pee about.  Apparently because I’m under 50 and don’t have a definite lump I don’t meet the criteria but I didn’t leave until I had a referral.
Reilly’s last few nights of no sleep has given me the chance to do what I do best.  Catastrophise. There is no better time than 4am to get those horrific thoughts flowing.  I’m not the first and i’ll not be the last woman with the 4am fears. Its the first time I have ever seriously questioned my mortality, sat and talked to Shane about will’s and arrangements etc. Not comfy conversations but so necessary.
As a parent you want to be immortal, as a parent to a non verbal autistic child I need immortality and then some.  I actually played through the scenario in my head and cried at the thought of my boy not knowing where I was. Would he understand? He relies so heavily on me alone its unbearable to think about.  So when a GP says its rare for something to happen l reply with so is losing your brother at 32 to a ‘rare’ heart condition. I take no chances.
I am merely trying to cover my bases, second base in this instance because its the only thing to do.  So off I went this morning to the breast clinic to get checked.  Appointment came through quickly thankfully. Consultant agreed there was a difference and sent me for a mammogram and ultrasound straight away.  Jesus they are tense times those waiting rooms.  I am very happy to say no cancer. Dense, thicker area but not cancer.  The relief is huge.
Check your bristols lasses, don’t just share hearts on Facebook or say you’re wearing red knickers in the Bahamas or whatever the latest thing is on Facebook and if it doesn’t feel right get cracking.  I know several ladies early forties who have had breast cancer in the last year or so and to them and all the others facing breast cancer daily I send my love xx