Thank god for that!

Four words.  Four very simple words with a massive impact.

There is a line in the play The Life of Reilly which is delivered by autistic actor Scott and it says “They say words behind my back that move to my heart and break it”. It’s about thoughtless people, I met some of those today.

The holidays are hard for us, when I say us I think it’s safe to say I speak for many. We are 4 weeks into the holidays the kids are out of routine and back to school anxiety is taking root. I’ve given my Katniss salute to a few when I’ve seen them out and about. Just so they know I know, I get it.

 

Reilly made it really clear today he wanted to get the bus into Town so that’s exactly what we did. I was a bit nervous about it as sometimes Reilly will want a certain registration plate rather than bus number, I am many things but a conjurer I am not. Anyway all good a double decker came immediately and we had a lovely ride in.

He has a route he takes every time and that’s through M & S and then straight to Fenwicks or HMV. Today was HMV for a new DVD. I should really take a camping chair as we could be there all day while he looks at all the covers. He bought Thomas Trouble on the Tracks then led the way back to the Haymarket. No stopping for an ice cream at Mark Toneys or Fenwicks so knew something wasn’t quite right.

A doughnut from Greggs and we got back on the bus. He didn’t want to get on it but seeing as I don’t live in Whitley Bay his choice was out.

It was horrific. From the second the bus moved he screamed literally til he couldn’t breathe. He was shouting go back and clawing at his own skin. He is covered in scratches. Now I knew if I turned around I would see, best case scenario would be 2 different types of reaction. Half bus thinking ah poor woman and child other half wish sh’d shut him up. Worst case would be a bus full of the latter.

A man and woman late 60s ish were sat in the seat behind me. I could hear moaning and would occasionally see her hands go up to her ears. Did I turn around and boot her? No maybe she had sensory issues, maybe there’s more to her story. So I persevered with Reilly. I cuddled him, I kissed his scratches, I explained we had to go home. Not once did I raise my voice or get angry with him. He’s non verbal this is his communication. Me getting angry would achieve nothing. In this situation I have to his anchor and safety net. I could almost hear them willing me to give him a smack.

Worst 25 mins Ive ever had with him. I was sweating, stressed and on the verge of tears. As the couple got off they avoided my eye contact and I heard her say to the driver in a snidey tone “THANK GOD FOR THAT!” Not satisfied that she was getting off the bus and out of the situation but wanting to drum up some comrades of hate, which she didn’t get. one lady said to me some people just don’t get it, they are awful and she’s right.

I did my best for my boy that’s all I can do. Everyone else has the luxury of moving their seat. What am I supposed to do? Get off?

I’ll tell you what YOU can do in this scenario.

  1. Don’t tut.
  2. Don’t roll your eyes to the person across the way.
  3. Don’t do massive loud exhales of breath behind my head you might lose your lips.
  4. Don’t stare.
  5. Say things like I know there’s maybe nothing I can do but let me know if I can.
  6. Be a friend. A knowing smile is enough to top up our batteries.
  7. Don’t judge. This isn’t bad parenting.
  8. If you get off at the same stop offer to carry a bag, ring someone. Our hands are usually full.
  9. Move your seat. If it’s too much I understand honest I do.
  10. Give us a break.

I did mouth out the window WTF is wrong with you which she saw. She just looked at me disgusted. I’m over it now but for the love of Tom people pack it in!

When I eventually got him home I tried to work out what happened. I know he wanted to go back to town and kept handing me my bag. He took my phone and typed this ….

He had changed his mind about the DVD he bought in HMV. Honestly I’m heartbroken. The meltdown was born through pure frustration because he couldn’t tell me. I had put my phone away to hold him on the bus. My little lad and what he does every day deserves a medal of Olympic standard.

I put him in the car, drove to HMV metro centre and changed his DVD. We went to the Disney shop and the lady on the till recognised him immediately from his blog and Facebook which was lovely. We had a Burger King and shoved some wool up the sucker in the build a bear factory (always a favourite).

Up yours old cow on the bus. Maybe some education from playing outside your house maybe useful?

Lessons

Today has taught me many things.

  • I’ll never go on holiday in a hotel with Reilly as long as I live.
  • I know what every floor in Hilton Gateshead looks like.
  • I know what every lift in Hilton looks like.
  • I know what every toilet in Hilton looks like.
  • For the amount of running I do I should be skinny.
  • I have shouted “don’t you go near Robs car” on more occasions than I care to mention.
  • My middle child Ellis is growing up too fast. First razor bought today.
  • That there are a lot of people who will let you down and disappoint you.
  • There are a lot of people who will cheer and champion you regardless.
  • That gluten free/dairy free pizza from dominos is not a replacement for an original Americano.
  • That mental health is more important than anything. ANYTHING.

Was fantastic to take Reilly to Brooke’s (Ellie in The Life of Reilly) party tonight. We stayed way longer than I thought we would he thoroughly enjoyed himself. I didn’t sit down once and must have looked like Flash Gordon in my yellow jacket trying to stop Reilly moving lights, knocking over fountains, getting in fountains.

We had to split as always Shane/Ellis to footy presentation and Me/Reilly to party. I’ve stressed non stop all day about taking him but so pleased I did.

The young girls at the party were so courteous. Standing in queues distresses him. They would let him in first little things make a huge difference.

Big shout to the IceCream Man. Interacting with Reilly like an absolute star. Love it when people make an effort with him.

All in all a great time, thoroughly exhausting but he loved it ❤️. Thankyou to everyone.

It’s a long one ….

It has taken me most of today to get over the nerves and excitement from yesterday.  Unless you work in the industry you cannot imagine the amount of work that goes into getting that show on stage. It started off being a very late one the night before battling the clock trying to get a programme together to give to guests. I eventually put the lap top down at 2am and then lay thinking about all the things that could go wrong. I’m anxious all the time anyway but this week i’ve been hyper aware of it.

Alarm went off at 6am and I hammered away at it only pausing to get Reilly off to school. 10.20 I hit send and prayed my friend at Sploshh could print it in time (straight opposite Northern Stage so terribly handy).

Into the bathroom and there’s my toothbrush accompanied by a something I’d rather not talk about that certainly didn’t belong to me. Irretrievable. What a start.

I’ll spare you the details of the inbetween things that went wrong like the allergic reaction to my handbag and the urgent antihistamines. Back to the play.

The Life of Reilly play is blessed with being an incredible set of cast and crew.  When I say crew I include the parents of the girls.  They are there for every rehearsal and help out as much as anyone on the day.  That in turn means their families must readjust for their other children etc and we are eternally grateful. There’s always an emergency pair of American Tan tights to run for for Grandma Mary and in this case a single duvet and some fairy lights.

It was really exciting for everyone for the cast to meet Paul, Nicky & Hannah (and Dani later on) from TryLife for the first time. There to start documenting the rise of Life of Reilly. Interviews, candid shots and all round greatness. Also Kieran Rose The Autistic Advocate who has been an absolute godsend giving brutal honesty on the things he has loved or loathed about the production. We have taken every piece of advice on board and it has helped the play evolve over the last year into something really special.

From arranging vans and drivers, learning scripts, techs, lighting, props, tickets, guests it’s pretty exhausting.

Yesterdays show was by invite only at Northern Stage.  Some of the regions top business/industry men and women. There were canapés (Thank you McKennas) and bubbles on arrival and the whole thing made me stand back and admire what the play has become.  I admit seeing Ian Whyte from Game of Thrones got me incredibly excited as many will tell you i’m a little bit obsessed.  I tried for spoilers for the finale but sadly I didn’t get any, I found it highly amusing that when the photographer from Luxe Magazine cane along I was dressed with makeup on and Alison was in costume (she’s usually super glam with sparkly nails and immaculate hair etc) leggings, T-shirt with Nutella on, no make up and her hair in a pony tail. She’ll suffer for her art though 😂. Also an absolute pleasure to meet was Kim Tserkezie. Anyone who has kids will know her from Balamory. A very talented lady passionate about diversity in media. We were honoured she came along.

As guests began to gather I’d catch glimpses of myself chatting and hosting and think who the hell is this imposter. How on earth is she standing there when her knees are weak and she wants to run.

The call to take seats came and I headed down to the green room to work on my speech for free the play. I could probably tell you the script word for word I’ve seen it and read it that many times. I knew what they were laughing at without seeing the gesture or hearing the words. I knew the cast would smash it. I was nervous nonetheless.

2 cups of tea and some deep breathing I’d something that resembled a speech. Half time break and the cast came to join me. Alison still tearstained from reading the poem ”My boy and me’ what I can only describe as someone standing on my heart when I hear it onstage.

There’s a brilliant bond between everyone in the show. I watched the girls doing each other’s hair completely at ease with each other and it made me think they are forming friendships that will last. Just as the parents have. Great things happening on and off stage.

I braved the second half to watch from the wings. The laughs were loud and the sobs were heavy. The cast 200% knocked it out of the park. They were brilliant! I’m not biased – there’s are many reviews that will tell you the same thing. This play is worthy of ANY stage and should be seen on every stage.

Crap they’ve done their bows. Standing ovation, rapturous applause. It’s my turn.

I totter our and almost fall into the stage after tripping on the curtain. Just what I wanted.

I introduce myself as Christine Stephenson writer of this blog. I tell the audience about the horrific stats that accompany autistic kids/adults. Dire mental health services. Struggles, fights, trials and triumphs and also why it is crucial we make the film. I nearly cried. My voice wobbled but I pulled it back. I’m just desperate you see for everyone to understand.

Paul took to the stage to talk about TryLife from Howdon to Hollywood. How he got into filmmaking from working in youth services and certainly held everyone’s attention. The introduction to these guys is what will make this film stand out in the crowd. The vision for it is off the scale. I see awards and why the hell not.

Finally Rob Armstrong stood to address the guests and gave them a little insight into why he loves the project and why everyone should get behind us and make it happen. The Armstrong’s kickstarted our find with a 10k donation! Rob is a huge supporter of Hadrian School in Newcastle’s West End. An incredible school which caters for the needs of pupils aged between two and eleven years with a range of additional needs including complex, severe learning difficulties and profound and multiple learning difficulties. He and Bev get it.

Many guests pledged to sponsor a page of the film script (example below). An innovative way to raise some funds for us and you never know it may be worth a small fortune when those BAFTAS roll in.

The Hilton gave is an incredible prize of an overnight stay, drinks, spa, dinner, tickets to see Marvel, transport etc which raised £765! They also donated the bottles of bubbly. Big Thankyou Lynn, Janet, Toni and the lady who I didn’t catch her name (shameful) for selling tickets and being such an enormous help.

All in all I great success. If you were lucky enough to be invited I thankyou from the bottom of my heart for the love and support we have received since. I know it resonated with many. The characters and scenarios can be identified with so easily when you live The Life of Reilly in your own home. It’s time for change.

Alison who plays Joanne and who is also the writer is up for a culture award on Thursday which in itself to be a finalist is outstanding! then we have our ball on 1st June (ask me about last remaining table or 2) so not quite ready to relax for a second.

What a journey. Stress and laughter our guides.

Alison Stanley , Kelly Best – We’ve got this! Xx

#TryLifeofReilly

If you would like to support us with sponsorship or anything else please see the funding page attached. (There are offline donations to be added to this).

https://www.crowdfunder.co.uk/the-life-of-reilly-autism-film

Pop Fantastic 

Don’t you just love it when you order something and then forget its coming and it’s the best surprise when you see it drop through the letterbox!

Earlier in the week I ordered a book called Pop Fantastic. The book is about Pop who is 7 years old, autistic and the writer is from the North East – what’s not to love here?  obviously I was going to buy it.

The book written for children and not just autistic children is beautifully illustrated and the perfect length to keep little curious minds happy.


The story shows that although Pop experiences things differently those things make him incredibly special. A magical land, a new friendship and a hero in the making.  I see this as a perfect bedtime story and will be reading it to Reilly tonight.  I hope to see more of Pops adventures.

More books with autistic characters please 😊.

You can buy Pop Fantastic (The Adventures of) by clicking this link:

Conversation frustration 

​Reilly said cheese tonight. He’s said it before and I love it when he does as it lets a tiny chink of light through on what lies ahead. He went on to babble for about 15 minutes and for some reason tonight it made me really emotional.  

I cannot express how huge my desire to have a conversation with my boy is.  


He tries so hard. It makes me so fucking angry the frustration he faces daily to make himself heard. Don’t get me wrong we manage most of the time I know what he wants as he is a brilliant communicator via other means but sometimes it overwhelms me that he’s 6 and we haven’t had a conversation.  

Imagine having none of the magic conversations about the run up to Christmas, I tell him regardless and talk to him as much if not more than Alex and Ellis, sometimes searching on his face for clues that he gets it. I think he does there’s no flies on Reilly and I think he knows exactly what’s going on but I can’t be sure because he can’t tell me. He points to Cars3 track in Argos book and then at Santa so I know he’s made that link which is great and I’m now working on Reindeers and carrots.  Might not sound like a big deal this is just an example but apply to any part of his life. How was school today Reilly? Nope  I’ll just check what his teacher has written in his diary or I just don’t know. 

As a Parent it’s your job to ‘get it’. I need to know what’s up so I can fix it, help him, make him happy. Sometimes I just can’t figure it out and that pisses me off royally. 

In my poem called I’m Jealous which I wrote a while back I didn’t hide my jealousy of others in fact I was practically green with envy. I still am at some things and sometimes when my head is straight I know people might be jealous that they don’t have a Reilly. He’s awesome and I long for the day that we might talk, that day might never come I’m prepared for that, I think. 

The Life of Reilly and Tarly

Tarly is settling in brilliantly! We all absolutely adore him. Reilly is already starting to be more vocal around Tarly, attempting to say his name and usually shouting no when he’s hanging off his pyjama bottoms.

Things I have discovered since Tarly came to stay:

  1. Puppies wee a lot.
  2. I don’t like the smell of dogs poo.
  3. I feel like a pin cushion off his little needley teeth.
  4. Dog stuff is expensive.
  5. I ❤️ shopping for dog stuff anyway.
  6. I ❤️ the way he welcomes you even though you’ve just left the room for 5 minutes.
  7. I ❤️ how excited he gets the second we wake up.
  8. I ❤️ smelling the top of his head.
  9. I ❤️ the way Reilly interacts with him.
  10. I ❤️ that he sleeps at the bottom of Reilly’s feet.
  11. I ❤️ watching him try and jump up the first stair.
  12. I ❤️ that I can practically feel stress fleeing my body when I stroke him.
  13. I ❤️ to watch him playing with Ellis.
  14. I ❤️ this little lad as part of our family.

I have a really good feeling about Reilly & Tarly and cannot wait to see how it unfolds. I’ve started doing some training this week with Tarly so I can add that to my cv as well as nurse, negotiator, cleaner, teacher, house wifey, researcher, diplomat, advocate etc.

I’ll try keep you updated with their progress as often as possible. My new fave pastime is watching these two instead of the telly,

All you need is love … and a dog.

When we were away last week I was starting to lose my faith in humans.  We were judged and glared at relentlessly on holiday with Reilly. It’s hurtful, not as hurtful as it was in the early days as now I just tend to get angry rather than upset.  Saving grace was we got back on Wednesday and on the Saturday we had booked at appointment in Carlisle with Perfect Pooches to see a Labradoodle pup for Reilly.

As most people will be aware we’ve wanted a support dog for Reilly for a long time and been messed about, you can fill in the blanks here -> Autism Assistance Dog – Story so far … 

We drove to Carlisle on Saturday morning with Reilly (they are relocating to Kent soon).  We had given him warning of where we were going so he was prepared when we arrived. We arrived at exactly the same time as a lovely family from Glasgow and were met by Anna the breeder at the gates of a massive old farmhouse.

We were expecting Reilly to a) refuse to go in b) go in and come back out within 4 seconds c) go in break something and leave within 10 seconds.  To our massive surprise he actually sat down, a huge effort given there is 5 strangers and the family dogs in a strange environment.  Reilly’s first ever experience with a dog was an experience I will never forget, unspoken friendship – I blogged about it at One boy and his dog.

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Tarly’s Bro’s

Anna brought 3 of the most adorable puppies i’ve ever seen.  One chocolate, one apricot and one black.  I wanted them all.  Reilly even used his finger to stroke their paws!  After much cuddling and oooing and aaahing we decided to go for the chunky chocolate fella, his name we already decided would be Tarly after my favourite Game of Thrones character Samwell Tarly – the ultimate friend and companion to Jon Snow, it’s just perfect and also because Reilly can say Tuh noises so it’s a good start.

I’ve been asked many times why a Labradoodle as a support dog and one of the main reasons is Ellis has allergies but also because they make outstanding service dogs.

Labradoodles were first bred  in Australia where in 1988 a breeder for the Royal Guide Dogs Associations of Australia deliberately crossed a Poodle and a Labrador with the intention of producing a litter with all of the temperament and trainability traits of the Lab, but with the non-shedding, low allergy coat of the Poodle.  Labradoodles are in common use in many countries of the world as assistance dogs, and of course, the same traits that make them a good pick as assistance dogs also makes them eminently suitable and popular as pets.

from pets4homes

Reilly did exceptionally well and managed around an hour.  We saw all the little pups in the puppy room which is inside the home.  Shane did cough at one point and he retreated behind me for 15 minutes as quiet as a mouse and shut himself down to recover.  We came home over the moon that we had found our little man and transferred the deposit across to Anna.

I woke up this morning to a text from Anna to say that she had been reading Reilly’s blog and the struggles we have had and she wanted to help.  Anna has offered to waive the complete fee for Tarly and would like us to use the money for the extensive training etc that Tarly will require for him to reach service dog standard, it’s an expensive business!

I wasn’t even out of bed and I was crying which was a new one for me.  I’m blown away that someone who does not know us would be willing to help like that.  More of this in this world would certainly make it a better one, faith restored in humanity.  Anna has a husband and four children herself and feels like she can help and really wants to – we will be forever grateful to her and Craig for showing such kindness.

Please be sure I will document every step of the journey with Reilly and Tarly from initial training right the way through to specialised training.  A journey I can’t wait to start.  It is scientifically proven that dogs are incredible companions for autistic people.  We want to take Tarly that step further as Reilly is a runner. Tarly will help keep him safe and provide much needed companionship but to be honest we are all a bit smitten and he’ll be much loved.

If you want to take a look at Anna and her perfect pooches and even tell them how awesome they are – please go to their facebook page Perfect Pooches Facebook.  

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Tarly Stephenson comes to his new home on 24th September.