Caution may be sweaty bits

How’s the holidays for you? I’m going to be truthful this has been my hardest one. I’m exhausted and so is Reilly.

His sensory issues seem to be amplified tenfold. We’ve bought 2 pairs of ear defenders in the last week but he can still hear people coughing and spluttering on. No wonder everyone has the flu constantly the amount of people coughing. I didn’t even notice if before. It’s EVERYWHERE. Not even like it’s anything we can control.

For most part Reilly has spent the summer holidays in one of three pairs of pyjama bottoms. His choice I’ve tried every single day to get him out, bribe him almost to just come out for an hour. If he doesn’t want to what can I do. When my own anxiety is high last thing I want us to be around people, peopling is overwhelming when your anxious.

Today I wanted to get some school shoes, I’ve put it off of wanting to tackle it alone so me and Shane went into Town. Ear defenders on, Disney shopped like a boss. Burger King starts off grand then a cough, followed by another at the other side of the room, then the kid beside us, then his mother. At this point Reilly is under his table. For fecks sake, it’s rare anyone covers their mouth too. Reilly looks as though hes about to launch someone and the tone is set for the day so we abort mission.

Walking back to the car something happens that neither me or Shane saw or heard but it has Reilly distraught. Lying on the pavement, sobbing real tears. A nice gentleman came and asked if he could go get ‘her’ some tissues. I don’t correct him I’m just grateful for his thoughts and Reilly does look exceptionally pretty even when he’s covered in snot and tears.

He won’t walk. He won’t let Shane carry him so it’s piggy back from Mammy. Northumberland Street to The Strawberry is quite a distance with a Reilly clinging on I can tell you. He’s 7 I can do it now, just. What happens as he grows?

I quickly unwrap the Cars 3 CD we’ve just bought to try and cheer him up. No that gets smashed and the scratched, jumpy life could be a dream belts out at 100 decibels. Shane cant find his phone and I just sit there trying big to catch my breath. Reilly zones out as we drive and calms the more we are headed home. He’s currently hoovering and watching YouTube happy as Larry.

The purpose of this blog is to ask what the fuck lies in store for my boy? His struggle is real. Child mental health services are atrocious with service help being cancelled by the day. I’m absolutely terrified for Reilly and I have no answers or insight as to how things will work out for him.

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3 weeks and counting

I am done in.  Physically and mentally.

I always get nervous on the run upto the summer holidays.  Reilly likes his routine and the holidays play absolute havoc with him as it does most kids.  My plan was to keep him busy.  Out and about, tire him out doing things he loves, less time in the house the better – this works really well when Reilly wants to be out but when he refuses to get out his pj’s it’s a new ball game.

Reillys is very controlling over me.  I cannot eat anything in front of him, if he hears me scraping plates he assumes I’ve eaten and tries to smash them.  There have been numerous plates and cups in my garden the last few weeks. I cannot drink – tea, pop, juice, milk doesn’t matter if I’m caught, this is no exaggeration there is at least an hours meltdown.  He gets that upset he shakes, cries and hurts himself.  I can’t do that to him so I go without.

I can’t go to the toilet, if I stand up to leave a room he will run ahead of me and stand at the toilet whether he needs the toilet or not to show he goes first. If he catches me middle of the night he wedges himself in there until he calms down usually around 30 minutes, I can protect him from most things but this one is impossible.

If I touch him, I love him sitting with me, if I stroke his arm he will scream and hit himself then place my hand back where it was as if to say I say it’s ok so now you can.

I can’t cough or sneeze this provokes an extreme reaction from Reilly and I spend most of my times praying I don’t do either.

i can’t answer the phone. Doesn’t sound like a biggy, trust me it is.  I’ve had more broken phones from answering calls I now just done bother.  Few understand when I say I will TRY and ring you back.

If I try and use my computer he unplugs it, iPad he throws it, phone tends to head down the toilet.  Hence my quietness of late.

If I try to talk to someone he’ll do his best to  disrupt it and will happily sit with his hand over my mouth for any amount of time.

When Reilly is at school or out and about these things are slightly less of an issue.  Currently my term time I eat tea before he comes home and have breakfast when he’s gone to school.  When we are velcroed 24/7 it all becomes a bit overwhelming.  Add to that an 11 year old who thinks he’s 17 moaning and groaning about FIFA points and first world problems and a 21 year old moving to York for Uni I’m a little stressed.

I feel broken hearted for him that such ordinary, everyday things give him so much terror and he can’t tell me why and I feel guilty that I come so close to losing my mind.

I think controlling is his way of managing his own anxiety, being an anxious girl myself I get it. As long as I sit on the sofa, and don’t eat, drink, fart, go for a wee, cough, sneeze or communicate  we are just dandy. Where he wants me no surprises just me and he.

This blog hasn’t been written to moan about my boy, it’s been written because sadly some folks just don’t get it. I would welcome any advice from actually autistic people or parents who have similar issues.  I don’t know how to help my boy or myself.

See you in 3 weeks 😬

 

 

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

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.`