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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Yoga

A few weeks ago I signed up to a beginners yoga class.  I practise mindfulness daily and love it.  It helps ground me a little and puts the brakes on the internal chatter my mind partakes in constantly. Yoga seemed to be a natural progression.

Myself and Kelly got there for class at 6.30 all the teas had been prepared before I left, my dad was watching Reilly until Shane returned so happy days I was off to de-stress.  We decided to try Yoga Hens after a recommendation from a friend.  The room was dimly lit with candles, warm and was playing some ambient music.  Perfect.  The mats were lined up on the floor with little cushions and blankets, maybe I was going to get some kip as well this is just win win win.

My stress levels of late have been through the roof.  Half term saw the shoot for The Life of Reilly as well as our first charity heart screening weekend.  That’s a lot of juggling for the work life balance.  Ellis my 11 year old has been stressed to bits because of SATS, SATS for gods sake.  I said to him do what you can and that’s it.  Do not worry about results because I won’t.  He is also feeling the burn at the moment from Reilly and his superglue attachment to me and it’s highlighted the need that we need to work harder at our family dynamics as it is far too easy to just keep Reilly happy as we can and siblings can and do suffer.

I ran out of melatonin and had none for most of half term week.  You can never get it next day its always a few days so that meant that I also had little sleep.  I do all I can to try and keep stress at bay.  I’m eating better, i’m going to the gym, I meditate every night but I’m still incredibly anxious.

I was excited to start yoga but I made a fatal error.  I had beans on toast for my dinner before the class.  I have never ever in my life been that stressed.  I actually pretended I had cramp in my foot to get out of my downward facing dog because an upward facing fog was about to descend on the room.  Awful.  I was shaking with fear on letting one slip.  Next week there will be no beans or pop.

All in all I loved the experience, I’m incredibly not bendy to my disappointment I wanted to be all goddess like and graceful. Instead I fell off balance constantly but tried my best, I muttered Jesus Christ more times than I fell over and felt sorry for the lady behind me having a massive clothed moon in her vision for most of the class.

I’m hoping my path to enlightenment is a quick one and I can be all chill and wear lycra without fear.  Can’t wait until next week and see what we have in store.  No beans I promise.

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That’s a wrap!

Had such a good week. Since Sunday we’ve pretty much worked on The Life of Reilly short non stop. I feel pretty emotional about it and cannot wait to see the finished result.

Deciding to push ahead with making the film was a no brainer for me. This blog has provided much enlightenment and entertainment over the past 2 years if the feedback I’ve received is correct. We have a lot of eyes on The Life of Reilly and it just seemed such a great opportunity to spread our wings and reach a bigger audience.

I put my hands up now and say I had no idea how much work goes into making a film. After all what more can you need than the actors, a camera and someone in charge. Pffft I’ll tell you what you need. Locations, actors, scripts (John Hickman), cameras, lights, mics, sound equipment, smoke machines, props, cars, food, runners, directors, makeup, hair, green room, paperwork, drone, chaperone …. need I go on ? These people worked HARD. Local heartthrob Andy Mills played a blinder as the miserable taxi driver and Scott Ritchie in his dressing gown our nosey neighbour. Just brilliant. The actual neighbours on location too not one complaint about the madness over the last few days and even a borrow of someone’s front door. That’s Annitsford for you, all rooting for Reilly and helping us along the way.

Charlie Price from Manchester plays Reilly. He is the most adorable lad. Professional is an understatement. He knew about autism and was so keen to meet Reilly in real life. The days start early and are long, I found it difficult never mind being the ripe old age of 7. He loves it though. Loves meeting people and acting, he’s awesome just like his Mum Andrea. I believe things happen for a reason more often than not and I’m grateful this lovely family have come into my life. Andrea cried with me at some of the scenes and had really thought about the relationship between myself and Reilly. Charlie told her the first night that he loved her and she got upset that I’d never heard that, almost guilty. I’d love to hear it, I hope I do, maybe I won’t but I know it. It’s in every cuddle and stroke of my face.

Stephen Woods the director and his team Jamie, Chas, Ryan, Charlie, Jake, Cal, Marni, Chase & Sophie from Act2Cam have blown me away. I advised a lot on set and got to see them in action. The work that goes into getting these shots just right is incredible, it’s creative, it’s frustrating, it’s their passion. No second bests.

Now Alison Stanley who you will know from writing the stage play and playing Mam Joanne in The Life of Reilly has knocked it out the park. She has looked as rough as a badger for 3 days in her pjs, messy hair, no shoes or makeup. The polar opposite of how you see her on a normal day with her lovely nails and immaculate hair. Real minger this week. She’s spent hours sitting outside in no shoes or coat shooting scenes. She’s cried, she’s laughed, she became her character Joanne. It was awesome to watch. Alison has felt the frustration of having her own son failed exactly the same as some of the scenes she acted so well. She’s been there. She nailed it.

Crissy Rock what can I say. You amazing woman. You’ve made me laugh and cry. I’ve learned just how much more there is to this incredible lady. Talented with a massive heart can’t wait to meet up again.

It’s important to me that autistic people act and crew on this project and that is something we will be sticking with in the feature. The feature will see Reilly grow into a young man and we’ll see some of the difficulties thrown in his way, the failings and misunderstandings but you’ll also see the love of his family, his achievements, his awesomeness.

All I can do is thank everyone from the bottom of my heart for contributing to this project. We can make changes to attitudes by teaching empathy and understanding. A glimpse at what happens behind closed doors is sometimes all it takes. We’ve opened that door a little to you all.

I’m asked constantly what happens now. The film has to be edited and then we will have a premiere at the Tyneside Cinema with some guest speakers in June. We will enter it to short film festivals and more importantly we will use it to dangle the carrot for funding and hopefully commissioning a feature length. You will not find anyone more driven than Alphabetically Autistic (myself, Alison & Kelly) to make it happen.

I have special thanks to my little pal Lisa Bewick who signed up to let us have her home for 1 day originally and that turned into 4! Not many would have been as cool but thank god you’re Team Reilly and can see the bigger picture. Elaine and Stevie from The Bridge Inn Annitsford opened every morning before the birds were up to ale sure we had a green room and were fed and watered. Above and beyond, amazing food, amazing hospitality that won’t be forgotten xx and last but not least Ken & Pat who have looked after the real Reilly and brother Ellis xx

Mental

I must apologise for my lack of blog posts recently I have had to take some time to step back and breathe after the incredible response to my husband’s social media rant.  If you missed it you can catch it here …….

The fallout from his spectacular f-bomb laden rant has been tremendously positive. Heartbreaking to hear so many stories of exclusion from all over the world, promising to hear people admit they acknowledge a lack of empathy and their need to change.

That post was not meant to go viral.

When it did,  although I embraced it and ran with turning it into a positive from a negative,  in reality it actually terrified me. I am and have been for the last 15 years a sufferer of depression, anxiety and OCD and to be thrust under the spotlight like we were was extremely daunting.  Parenting criticised, by idiots granted but still hurtful nonetheless.  Trolled, not as much as I imagined but they still came out from under their trip trap bridges to throw the odd insult.  This behaviour is difficult to manage by most.  I however am not most.  It has given me many more sleepless nights if that is even possible.  I have analysed every post and comment, dissected it and gone back to look at it a bit more.  Thats what anxiety does.  It’s relentless. I stopped reading at your son is a window licker.  The positive posts were amazing and we’ve been thanked a million times over for having the voice to say things that others haven’t been able to say.

When I was asked recently if I would like to appear on the radio show Mentally Sound on Spice FM I jumped at it. Another F”#k you to my anxiety that I will not be kept down, I can do these things.  I love talking about mental health and it really frustrates me that people still feel uncomfortable talking about it.  I understand why – stigma, stereotypes, etc have a lot to answer for.  After all it’s not often you see mental health painted with a lovely picture it’s often accompanied by a horror story in the media.  I have to speak for Reilly while he has no voice or finds new ways to project it and I will do the best that I can to advocate for him.  I see posts on social media all the time about parents worrying for their kids, thats what we do as parents, worry but multiply that by a million and you may be getting close to my struggle.

The lads Ricky & Steve made me extremely welcome and it’s great to sit and talk to others who are unafraid to bare their souls on the subject.  It affects all of us in one way or another.

Link to Mentally Sound Podcast I’m first guest on about 15 mins in.

Speaking of mental health recently there was a debate in the Houses of Commons about autism and suicide attended by approximately 10 MP’s.  Now a recent study shows that autistic people are 9 times more likely to kill themselves than NT’s and will die on average 16 years earlier.  A handful of MP’s to debate this isn’t good enough.  I’ve been on to my MP to find out why she wasn’t there.  You should do the same. You can find your MP and how to contact them here.   Mental health services are an absolute shambles, people who want to help can’t and people who can help are stretched to the limit.  Waiting lists are too long and people are suffering horrifically.  It has to change.

Top points from talking at Mentally Sound were:

Let “talk more, judge less” be your mantra and we can’t go far wrong. Talking helps.

Use the #askingautistics hashtag on twitter.  As I said in the interview I am an expert at being Reilly’s mam thats where my expertise ends.  Get solid advice from actually autistic people. There is no better guidance whether you are a parent, a fellow autistic person, an employer, a friend.  I talked for 2 hours with an autistic adult last week and he blew my mind with his concept of how Reilly’s thought process works.

ps want to help us tell it how it really is?  Then please donate to our crowdfunder if you can for The Life of Reilly pilot with offline donations we are headed for 3k.  This is our chance to educate a wider audience.  The play has done exceptionally well and returns to the Northern Stage on March 16th.   Tickets for The Life of Reilly available, it will sell out.

https://www.crowdfunder.co.uk/the-life-of-reilly-film-pilot-1

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The Life of Reilly Film

I was in a meeting this week to talk about turning The Life of Reilly into a screenplay.  At first it sounds impossible but the more I learn and investigate the more I think there is a really good chance of it becoming a reality.

I had no idea how much money would be required or what it would entail.  My good friend Steve who plays Ged Reilly’s Dad in the play has a Act2Cam film school and is well connected in the industry and Alison Stanley who wrote The Life of Reilly play already has the film mapped out in her mind and in her notebook.

To dangle the carrot to distributors etc there must be a 10 minute high quality pilot professionally made.  This involves bringing in scriptwriters, a producer, a director and casting.  The scene used for the pilot will most likely be the explosive showdown between Reilly’s Mam and the local council about school transport.  We’ve all been there and can relate. I think, not that i’m an expert, that it will in a snapshot capture the everyday stresses we face.  Handing you most precious belonging over to a complete stranger, trusting them to care for your child and your child not able to relate to you whether they like this person, whether they feel safe or threatened with them is the hardest thing i’ve had to do.

I wish people knew how we truly live.  A minefield of marital disagreements bore from stress over money and time misspent, from a cocktail of sleep deprivation and anxiety, from a fear for their future that gathers a permanent black cloud of uncertainty.  The battles we have, the books we must read, the dossiers of papers we amass hi-lighting every single thing your child is ‘failing’ at to reach an unnecessary milestone to achieve a vital tick in a box to notch up the score on the SEN school lottery.  All this when all we want to do is celebrate their achievements no matter how small.  All this just to get our children to the school and the education they have every right to.

People leave the play touched by what they have seen.  It changes their perspective about autism family dynamics and I like to hope that their new found realisations are shared with friends, families and acquaintances drumming down judgement from the lookers on.   A film on TV could do so much.  NT actors working alongside autistic actors and consultants is a dream. No flowering it up just telling it like it is in all its glorious sometimes heartbreaking detail.

Please if you can support this project, click the link below.  I trust the professionals who are already lining up to do  this pilot and hopefully full length film the justice and the air time it deserves.

https://www.crowdfunder.co.uk/the-life-of-reilly-film-pilot-1
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Jaycee’s Party

What a week! Since Shane’s post about Reilly went viral I have spent my time pretty much trying to keep up with the thousands of messages we have received.  Messages from all around the world all with the same story – that happened to us too and still is happening from child through to adult.

I am overwhelmed and heartbroken in equal measures about how much of an enormous problem inclusion is for our fantastic kids. In fact not just our kids, I have had messages from parents who’s kids are excluded by friends and family members, adults excluded because of race, religion, the LGBT community and many more.  We are all human and this just isn’t good enough.  Who are we to judge another?    

I received a message on Wednesday night on our way to London to talk to This Morning.

It was from a Mam who has had the same problem, she arranged a tea party for her beautiful little girl Jaycee which no one attended, they were having another in a place close to me with cakes and a magician and would we like to attend and we did attend yesterday!

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Because we were somewhere new and there were a lot of new faces it took him a little while to settle but once he did he was brilliant.  He did spend the first 10 minutes trying to open Jaycee’s presents but problem solved simply by moving them out of sight.

He skirted the edges as the children sat on the floor watching the magician (who was awesome by the way John Penman).  He didn’t join in the games directly but watched from the sidelines.  He loved the cake!!  He danced to gangnam style and shocked me by grabbing the microphone and becoming very vocal,  not words anyone would understand but for me I’ll take it and I loved it.

An amazing family with an incredible little girl.  Kindness costs nothing people and will enrich your life. Maybe more people should try it.

Thankyou Tanya & her family for making us so welcome. xx

Pop Fantastic 

Don’t you just love it when you order something and then forget its coming and it’s the best surprise when you see it drop through the letterbox!

Earlier in the week I ordered a book called Pop Fantastic. The book is about Pop who is 7 years old, autistic and the writer is from the North East – what’s not to love here?  obviously I was going to buy it.

The book written for children and not just autistic children is beautifully illustrated and the perfect length to keep little curious minds happy.


The story shows that although Pop experiences things differently those things make him incredibly special. A magical land, a new friendship and a hero in the making.  I see this as a perfect bedtime story and will be reading it to Reilly tonight.  I hope to see more of Pops adventures.

More books with autistic characters please 😊.

You can buy Pop Fantastic (The Adventures of) by clicking this link: