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?

Edinburgh Fringe

 

“I may not speak but i can bloody hear you!”

Firstly I must apologise for my lack of posts of late.  I find it near impossible when Reilly is off school to access anything that actually plugs in – kettle, TV, DVD, Ipad, phone and laptop.  Its been a long 2 weeks so far Reilly is back to not allowing me  to eat or drink  anything when he is around the house which when he is at school is pretty manageable,  while he’s off it’s impossible.  His routine is out and it’s hard on him and in turn us.  But we do best we can and keep moving forward.

Behind the scenes it’s all systems go with The Life of Reilly play.  There is a show at The Cluny in Newcastle on Wednesday which is SOLD OUT and that will warm everyone up nicely for Edinburgh Fringe!  We will play there at TheSpace on the Mile from the 12th – 14th August (not 18th).  It is an incredible venue right in the heart of the festival.  I have to admit I did not realise how freaking massive Fringe is.  It wasn’t until I was flicking through the guide that it actually dawned on me that this is a huge deal for us.

The work going on alongside it is actually more than a full time job.  There’s hundreds of rehearsals obviously,  the Fringe version is only 50 minutes long so the original play has been cut massively.  It works though and I think it will be very popular with the die hard theatre goers who attend Fringe.   The cast are staying in caravans for the duration at Seton Sands a 15 minute train ride out of the centre.  Accommodation during Fringe is a bit like school holidays everything trebles so being such a large cast it was the only sensible option.  It’s taken a lot of planning and everyone in the production has really pulled together.  Scott our autistic actor is travelling back and forward daily which shows his absolute dedication to the play.  Edinburgh is busy and overwhelming at the best of times but Fringe takes it to another level.

This week we’ve been looking at ways to attract attention during Fringe.  We are already shortlisted for a SIT Up award which is Social Inclusion Theatre. This is fantastic and harnesses everything we stand for. We also need to grab the publics attention, never waste an opportunity to educate, be it on the streets or on the stage.

All in all i’m really excited, the reviewers can be brutal so gearing up for the good, the bad and the ugly! We know that audiences across the North East love The Life of Reilly with it’s thoroughly relatable characters, Northern humour and honesty.  Praying the Fringe participants will too. This play is worthy of any stage, wherever in the world as it’s message is a universal one of autism acceptance and love.

Come see it!  Life of Reilly Tickets.

Come say hi if you see us.  If you hear the Death March from Star Wars there may just be the cast of Life of Reilly in tow.

“To change the world, you must first change your mind” – Hendrix.

Let’s change some minds!

xx

'Beautifully written, full of touching moments & fantastic acting'

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

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

Reilly the Bouncer

I ventured out this morning with Reilly to Airbox Bounce at Cramlington.  Reilly has been here before and loves it.  This morning was different though because we went as part of the specially arranged sessions with Autism Northumberland.

I’m a softy and a bit of a home bird with Reilly in the holidays but when offered a lift and some company with my nearly cousin and her 2 boys. I decided to take it and give it a go.

I’ve mentioned many times before how difficult it is taking Reilly along to activities for many reasons- the main being understanding of members of the public, some people are incredibly rude and unlucky for them as Reilly grows older and my skin grows thicker I have no problems addressing the tutters and moaners straight on.  Tut or learn is always my mantra.

We arrived just before 10 and parked at the rear of the building.  This has been well thought out and lets the kids from the group leave without having to negotiate the groups of people arriving for regular sessions. They also countdown to the end of the session which is great for the kids to prepare. 


There were plenty of staff there to ensure the kids were safe.  Because it was just our kids and their siblings it was perfect.  No blasting music to set off any sensory issues. Lots of space to play without the rough and tumble at their own pace. 

There is a cafe upstairs that sells everything you could need or want (soya milk is good Airbox for those dairy free folks 😉). The cafe has a great view of the whole trampoline park below.  

Downstairs where the majority of parents/carers gathered is a small soft play area which Reilly enjoyed.

He had a great time and has been typing Airbox into the mac this afternoon so safe to say we’ll be back with the Autism Northumberland group check their Facebook for booking info.  Being able to have fun with Reilly without the judgements, stares and being able to relax is priceless. 

While I was there I picked up a nomination form for Autism Northumberlands Awards Ceremony which is just a lovely idea.  These children are special, we all know that but by Christ they have a struggle and this ceremony is to celebrate those achievements no matter how small.  Nominations are open to anyone if you know a superstar you would like to put forward.   Nomination link


Nearly 50k views

Just checked my stats and got such a shock that The Life of Reilly is the tiniest smidge off 50,ooo views.  This makes me so happy.  It’s hard sometimes to bare your soul and write some of your fears and feelings for the world to see.  It is cathartic for me.  Sometimes you got to write it because if you shout it quite frankly your going to make a scene and we do enough of that already.

I remember being absolutely terrified to press publish on the posts

Did she just say that?  and   I am jealous. There I said it. 

Would people think I am a shitty parent because of those posts?  I am jealous was shared so many times on social media and I only saw one mother who wasn’t happy about it.  I don’t remember where the comment even is now but it was along the lines of she wants to think herself lucky she has a child blah blah blah.  NOBODY needs to tell me this.  I am truly aware that others have it so much worse than me but the purpose of the blog is to inform people of our autism, the one we live and breathe.  

I hope that I have raised an eyebrow or two with the blogs to date and I hope it has made people less judgmental of others.  Public acceptance that people are different is the answer.  Mind sets need to be changed children need to be educated not just in schools but at home too (not just with autism, pick a topic it still fits).  Different is ok.

I’ve been asked to make more videos, christ on a bike i’ve also been asked to write a book.  What I would like to know is what do you like about The Life of Reilly? What would you like to see more or less of?  Let me know x

The photo that made me cry

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 the bathroom.

Nope wasn’t happening but I kept the faith.

One night sitting on the bed I switched my phone to selfie mode to let Reilly have a look at himself.  He loves himself and will happily check himself in the mirror at every given opportunity, not sure where he gets that from.  As always I said Reilly let’s see your funny face and boom there it was.  2 years of trying and he does it on command.  It was a breakthrough and I was ecstatic, still am.

Never give up.

Progress no matter how small it may seem to others is hugely significant in special needs families and should be celebrated like we did by taking about 50 more 😊.

Simple things.

Rubbish

What an absolute stinker  of a day!  Reilly’s behavior today has been just short of horrendous.  Up at 6am which was a bonus as we were allowed to play tents for an hour before actually having to come  downstairs.

The only peace today was when Reilly was eating an ice-cream, rest of the time he was like an angry whirlwind.

IMG_9771

Today he doesn’t want to be anyone’s friend.

  • He has hit Ellis numerous times for coughing.
  • pulled my hair for offering help with Finn McMissile.
  • Thrown my candles and hurricane jars off the shelves.
  • pulled a drainer full of dishes onto our waiting to be tiled kitchen floor which all smashed to smithereens and then proceeded to try and stand on the remains.
  • Flooded the bathroom floor as stupid me didn’t turn the stopcock off when the washer finished.
  • Had  a meltdown for 45 minutes because he couldn’t get the shed door open.
  • Pulled over my recycling bin in protest, scattering bottles everywhere (I don’t drink  by the way but that could change very soon) and sat on the top like the Lion King.
  • Took huge offence at me applying factor 50 plus suncream and covered himself in washing up liquid instead.
  • My dad took pity and ushered me and Shane out for something to eat while Reilly had a snooze but then HAD to phone for us to come back as he had the audacity to try and put on a giraffe instead of a lion.  (If that means nothing read back  on the lion and the giraffe post).
  • He was still crying when we got home to which Shane bundled him in the car with his bucket and spade to the beach.   and breathe.

Shane asked do you want to come with us?  Hang on I’ll just think about that for 0.025 seconds.  NO, no I don’t, drive away quickly and come back when all is calm (preferably 10.30pm and ready for bed 🙂 ).  I have said FFS far too many times today and not even under my breath and I’m no Sweary Mary.

Does that make me a bad mother?  Does it hell.  It’s ok to say your kids get right on your wick sometimes.  I get on his too.

In fact today everyone gets on my wick so here’s to a nicer tomorrow.

Just one of those days.

IMG_9786.jpg
Neighbours must think we are absolute scruffs!

 

Oh Brother! Life with a sibling on the spectrum


Reilly has 2 brothers Things 1 & 2. Thing 1 Alex is 19, extremely funny and sometimes cool.  Thing 2 Ellis is 9 also very funny and extremely handsome.  All traits from their Mother, I will take credit.

Reillys autism has a big impact on their lives, more so Thing 2.  He would prefer to spend more time at his grandparents house (5 minutes walk away) than at our home. There are a couple of reasons why:

  1. Little sleep at home.  Huge issue for him as he’s a sleep monster.  Reilly has melatonin but this doesn’t keep him asleep it just helps drift off.  This can result in hours of screaming, playing, lights on and off during the night.
  2. Waited on hand and foot at Grandparents house. I am so busy trying to keep on top of normal things and stopping Reilly escaping, tipping food out, flooding bathrooms, jumping off window sills that the days of “mam can I have a drink” and it appearing 1 minute later are gone.
  3. He does not have to fight for attention.  Sad as that sounds it’s true.
  4. Reillys meltdowns upset him an awful lot. He cries when Reilly cries and it’s absolutely heartbreaking.

I hate it.  I hate that our family unit is so dysfunctional. I miss him even though he is at home a lot he should be there ALL of the time, that’s how it works.  Many, many people have said well MAKE him stay at home and to that I raise my middle finger. We are doing our best and his happiness is paramount. It’ll work itself out soon I have no doubts.


I asked Ellis some questions recently for the blog which I will publish soon but his very first answer shocked me and made me cry.  I said how do you feel about Reillys autism?  I expected him to say, he gets on my nerves, he never sleeps, he’s boring, he doesn’t play with me etc. All things he would have said just 1 year ago.

He actually said:

I feel guilty.  He went on to say I feel guilty that I don’t have autism, I have friends; I like going to the shops – I can talk.

I then got that feeling I get so often when someone is standing on my heart.

Ellis loves Reilly to bits and is very protective.  In the moments when Reilly is up for it he will chase him around our living room, encourage him to get on his back for a horsey and Reilly loves it squeals with excitement.  Little glimpses of how he would love them to play everyday.   Reilly also loves Ellis, not so much at the minute.  Ellis coughed recently and Reilly hasn’t forgiven him for that yet. When Ellis walks in Reilly runs upstairs and hides – this too will pass.

Having an autistic sibling can be really difficult.  Social outings as a family become thin on the ground as there are many scenarios that we avoid like funfairs, cinema etc we have to split and rarely get seen altogether as a family.  So much time is spent discussing Reilly at home with schooling and behaviours it can take over your life.   Reilly likes to disrupt what Ellis is doing we’ve had to put a lock on the inside of his room so Ellis can go in and keep Reilly out!  As much as Reilly can get on Ellis’s wick Ellis understands the difficulties Reilly faces and really does do his best to help him out.

He has no problem in telling people why his brother behaves the ways he does and can’t talk. Every time a new friend comes round I love to hear his explanations. He loves his football and his time with his dad doing that and sometimes Ellis and myself will have a sneaky hotel stay, just local and more importantly just us.  Little things that mean such a lot.

He deserves lots of credit for being so understanding, so loving and so brilliant. He celebrates every bit of progress Reilly makes and he’s proud.   Reilly I’m sure knows that Ellis is his best friend, buddies for life and his protector. Something I expect we’ll see much harder evidence of in the coming years.  God help anyone that messes with this little brother ❤️.
I have just this afternoon found out that the brilliant  Autism Northumberland based in Manor Walks Cramlington are hosting a siblings event for these little guys like Ellis to get together talk, play and be appreciated in May. Brilliant idea and he’ll be attending for sure. 

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