Walking on egg shells (The kinder variety) 

The Life of Reilly

Reilly is super sensitive at the minute.  He hates lots of things.  His latest is he doesn’t like cups of tea.  Doesn’t matter what colour the cup or what type of tea but he won’t tolerate it in the same room.  We have a one cup boiler and if he hears it he storms the kitchen trying to get on the bench by any means necessary and smash the offending cup.  This is really unfortunate for me as I love tea, I embarrass my friends by ordering tea pots in bars on a regular basis.   I’ve lost 4 cups this week alone. If it doesn’t smash the first time he’ll have it on the second.

I feel like I’m walking on eggshells in my own home.  If I need to cough I run to the garage or back garden so he doesn’t hear.  He doesn’t like anyone eating different…

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The photo that made me cry

The Life of Reilly

Interacting with Reilly is pretty difficult.  He doesn’t like round and round the garden or this little piggy. He doesn’t care what the cow or the pig says.  He doesn’t dance. He doesn’t talk but this doesn’t stop us from trying everyday to get a bit of interaction going.

I’m not the crying type occasionally watching extreme makeover home edition some rogue tears will sneak out.  Hodor’s demise this week caused a flood as did Claire and Jamie’s baby in Outlander (Escapism at its finest you should try it) but that’s about it. This photo however makes me cry happy tears just looking at it.

Reilly is nearly 5 and probably off and on every other day since about the age of 3 I’ve said lets see your funny face.  He looks at me as if I’m stupid then cracks on with building, tracks, jumping on the bed or flooding…

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I captured a word on video! 

The Life of Reilly

Lovely day today with Reilly, we went to Pet’s Corner in Jesmond. Sun was shining and there was a Thomas Train there which made Reilly super happy.

Reilly loves Jesmond Dene because it has everything he likes in one place and that’s park, cafe, ice cream, woods and chickens. What’s not to love?

I was over the moon when I took some video of him on the train today and managed to catch Reilly saying taraaaa to the people we left at the stop!  He’s said it only a few times before and I’ve not heard it in months.  I love it, small to some – the world to me.

Another massive achievement for Reilly today was he insisted on fastening his own shirt buttons, they are really small and fiddly but he would not be helped. Took a little while good job I wasn’t in a hurry but he…

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Big Cook Little Cook

The Life of Reilly

I AM NOT A DOMESTIC GODDESS let’s make that very clear but recently Reilly has started to like cooking, of all the things.  He loves to mix things up and put them in the oven, bit like me presentation is not the best and quantity always wins over quality in my house.

Anyway I was at a friends house the other day and he was cracking eggs into a bowl with Dave, I should point out Dave is quite famous for making cakes, he’s the cake maker to the stars at Symphony in Sugar and I did a lot of PR for them and met some fabulous peeps (random fact) so he knows what he’s doing, I on the other hand am only good at eating them.

For example Daves cakes:

img_0341 Angels of the North – I mean come on!

img_0712 I had Reilly after touching Duncan’s Helmets

Anyway when shopping…

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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
https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FBBCLN%2Fvideos%2F1538043862943362%2F&show_text=0&width=476

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!

IMG_2685.jpg

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

The ramblings of a proud stressed father

The Life of Reilly

It’s been a while since I penned a post so welcome to the ramblings of a man on the edge. Readers who follow this blog regularly will of no doubt thought that poor Christine and possibly she doesn’t have much support; well I’d agree it is poor Christine and our circumstances dictate I have to work long hours to cover bills and allow the family to have a quality of life.

I enjoy my job to a degree and it actually keeps me sane having the routine of going to work and having the challenge of what my career brings BUT there isn’t much of a work life balance most months. I can almost hear people saying shut your gob and get on with it like parents the breadth of the place.

I hate the fact at times I come in from work and Reilly completely blanks me and Ellis…

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