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 ❤️

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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

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

 

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.`