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

Overnight insight

Anyone else crave a night away and then when they get there wish they were home?

In the last 7 days Reilly has been up at 4am 3 nights. Luckily for him he’s off school, not so much for me as I don’t have a chance to recoup any sleep.  I’ve been so excited to redeem some of my hotel points and just chill out with Shane. Was a rocky start after his 4am wake up and then falling asleep 1.30pm when we were due to leave at 2pm to drive to Durham.

Prior to the sleep he had an absolute meltdown – the reason for this is a new one and developed over then last couple of weeks.  He’s always hated coughing and sneezing for as far back as I remember he now hates …. Farting. Doesn’t matter what pitch, tone or whiff its not happening. Unfortunately for Reilly he has a brother who could singlehandedly power a wind farm.  He spent 45 minutes trying to fart. It sounds funny granted but look a little deeper, this is one of those times when I’d kill to know what he’s thinking. I feel so sad for him when he becomes that frustrated over something to us is so ridiculous but to him its enough to want to head-butt the wall, cry and scream. Its not ridiculous to him.

I let him sleep he was exhausted and decided our lunch out could wait and that we’d leave later when I knew he was OK.

We’ve been upgraded in the hotel to a suite which is lovely, the shops were closed by the time we got here so we went for a lovely Thai meal and then for a drink (teapot for me).

I’m in bed watching Bear Grylls eating a Fry’s cream (not Bear actually eating a Fry’s cream that would be shit telly) and having a cuppa. Shane’s fast asleep and my separation anxiety is raging. As much as I despair at the lack of sleep I miss him reversing his bum into my curled up legs and I miss putting my nose over his ears and smelling his hacky potato farm lugs and ratty hair. Sigh. Surely I’m not the only one?

So I shall continue with Bear and see who drinks their own pee then put on some mindfulness meditation and hope I sleep.

Love my boys. Roll on back to chaos in the morning x

Big thankyou to my Dad for looking after them tonight.

 

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

and relax ….

Tomorrow is Ramside Hall Eve. I cannot wait!

I have felt more stressed than normal over the last few weeks and there is no better time to get away from it all, even if it is only for one night. This is my christmas present from Shane.  When anyone asks me what I want for birthdays, christmas etc the answer is always the same, let me get away for a night, free from responsibility and some time to breathe. I will also take the opportunity to meet up with the awesome Autistic Advocate for a coffee and discuss moving things forward with all things autistic in the right way.  His blogs blow my mind and give great insight to actually autistic lives.

Managing stress is something that I’ve done since I can remember.  Anxiety shacks up with depression in my mind and doesn’t even pay rent, unwanted squatters who I just cannot evict.  Sometimes they are noisy, other times we get along dandy – at the minute they need an ASBO.  When there is a lot going on they crank up the house parties and stop me from sleeping.  Couple that with the fact that I’m an incredibly busy lady with 3 boys, 4 if you count my husband and its no wonder.  It’s not unusual for me though and i’ll ride the wave like I always do. This too shall pass, might be like a watermelon from a birth canal but it will pass.  I’ve always been very open about the fact I take meds and have done for years.  I really wish there was more discussion around it.  How the hell are people supposed to know that they aren’t alone when we are still speaking in hushed tones about it?

Being Reilly’s Mam brings its challenges but I can tell you something for sure my 11 year old NT child is stressing me out wayyyy more than Reilly at the moment.  When did 11 become the new 15?  I even offered to rap on his youtube channel to cheer him up yesterday and was told to stop trying to be peng.  Because I’m down with the kids I know what that means but I played on it and said pardon i’m nothing like Pingu.  No laughs just a look of utter disgust that reminded me of myself at approximately 13 with my awful perm and vile attitude to match.  He’s his mothers son that’s for sure.

I try and relax as much as I can.  Mindfulness is a huge part of my routine and EVERY night I unwind listening to dulcet tones and try to breathe correctly, most of us don’t.  It works you should try it.  I’ve signed up to yoga classes.  I’ve wanted to do this for years and always been a bit scared of the odd sneaky pump making its way out during a downward facing dog. Fingers crossed I can behave.

Nights away to just be myself are so valuable I cannot put it into words.  I get a bed to myself, MYSELF!  I get to be alone, I can go in the bath with additions of toilet brushes, toilet rolls, dog shampoo, Lightening McQueen, underpants etc. I’ve even treated myself to a bath bomb, this one will not go down the toilet like the others.

I will eat from a china plate, not a plastic Christmas plate and I will eat at a table and not the 10th stair up where I cant be seen shovelling it in like a jazz band drummer in a bid to eat while its hot without it being thrown across the room like a foody discus.

I will swim like an overweight mermaid and sweat in the sauna. I might even read something that’s printed in an actual book!  The luxury of it all!  I don’t want any phone calls unless its life or death.  I don’t know or care where the socks, shinpads, PS4 controller, insert your own here are.

I will try and forget that I have recently acquired some new wall art up my stairs and in my bedroom courtesy of Reilly and a yellow hi-lighter, to be fair I really don’t give a f@ck about this if I’m honest.  Pick your battles.  This is an easy one and will match his earlier works of art dated circa 2015.  It’s just another job to add to the list of never ending jobs that never get finished at home.

So Ill return on Saturday hopefully refreshed and ready to take on the filming of the short for The Life of Reilly on the 11th & 12th. I’ve attended many meetings lately about it and i’m super excited to see it come to life. This is just the beginning for The Life of Reilly. Where it stops nobody knows.

(I should really add that I usually don’t sleep when I’m away, the intention is there but I lie in bed wondering if Reilly is ok, how maybe I shouldn’t have went and what the breakfast will look like).