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?

 

 

 

 

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Little things

Yesterday was one of those days that come along just when you need a reminder that the world is not actually filled with horrors.

Ellis was very kindly invited to a birthday party at the Metrocentre, I have a love hate relationship with the place.  I only like parking where there are 2 spaces next to each other which is a near impossibility here and for someone that suffers from anxiety my biggest fear is no quick escape route to fresh air,  there’s no windows when you are walking about and it makes me feel claustrophobic, sometimes.

I found my little bit of sanctuary after dropping Ellis off at Game and found I had 2.5 hours to do whatever I please.  Yay says the Christine who craves time alone, boooo says anxious Christine – what if I need to leave earlier, what if I have a panic attack etc etc.  I wandered straight to Waterstone Cafe and bought the book I had been waiting for.  Notes on a nervous planet by Matt Haig.  All bout how to stay sane in a world that is anything but, ironic that 2 armed cops were stood outside the window when I looked up.  My incessant need to be attached to social media for my charity work and Reilly will be the downfall of me and something I need to address and get some organisation in my life.  We’ll see how that goes, its not the first time i’ve said it!

I grabbed a tea, soya milk and tiffin and started to read.  I could have stayed for days.  I NEVER do things like this.  Im that busy trying to be busy to stop overthinking everyday life I had forgotten there are simple pleasures in actually taking 5 minutes for myself.

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I then decided I would do something else I never do and went for a make up consultation at Urban Decay.  I an absolute gem of a girl called Rhona invited me to take a seat and we chatted while she explained what a setter was and the likes and even proved they work by doing a demo, i’m cynical, i’m not the girliest of girls and still apply all of my makeup  with one finger, quick dressing gown wipe for next product, you get the picture.  Anyway she was right I was wrong and that never happens.  We discussed our love for Harry Potter and got to talking about Reilly, lack of sleep, autism and defibrillators in no particular order.

When I was leaving she gave me her email address and said she was inspired by the things we talked about and she would love to do my makeup for free for our winter ball in December.  I nearly cried.  Biggest of thankyous to Rhona she probably has no idea how much she made my day and i’ll definately be taking her up on her offer.

Little things that restore my faith in human nature.  Ellis had a great day at  his party, Reilly had a great day at the beach with his dad and I went to bed trying to read my book by the light of my phone trying not to disturb the tiny cherub sleeping peacefully beside me.

A good day xx

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

 

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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