Penny for my thoughts

Today has got me thinking. You know when I have time to really think is a rare thing these days. My choice in a way, when I’m busy it quietens the mental chatter that i try to mute.

Shane was out shopping with Ellis and me and Reilly stayed at the villa he loves a bit of solo time with me and spends most of it stuck cheek to cheek. He went inside to watch Toy Story 4 and I pulled my sun lounger to the patio door do I could see him and he’d have to hurdle me to go unnoticed when passing. I got 2 hours sun bed time! What a result. My mind however was in overdrive, in overdrive with all the things I push to the parts at the back of my mind marked later.

I lay watching him pausing, rewinding the same parts of his film with absolute joy on his face and I felt such relief. He’d had a bad morning, filled with anxiety which comes out as plain bossy and awkward. We know it’s not and it’s in fact Reilly’s way of keeping control. It’s upsetting, Ellis still takes it personally, Shane and myself take it for what it is. An anxious little boy trying to make his world right and we’ll do anything to help.

I sat trying to envisage Reilly as a young man. What will he be doing? He’s incredibly bright. I wonder what his exam results will be, will he stay in school, could he train with his Dad? I know he will find his way but I feel we need to start laying the path. I can wait and see how he does or can try and plan. I chose the latter.

One thing I have learned is NEVER underestimate him. Just this morning he took the melon from the fridge and took me to the pool and gestured putting it in. I said no he gestured yes. This went on for 20 mins before he put it down. Fast forward an hour in the local shop and he leads me straight to the inflatables aisle and picks up the box with a clear picture of inflatable watermelon on it. He’s a genius. It was 35 euro I bartered him down to a 7.50 Lightening McQueen instead.

Like I say never underestimate he always finds a way. Resilience is incredible. independence is fierce. He’s a winner I’m sure of it but what if I’m wrong. Nothing is set in stone for any of our kids.

Shane has talked incessantly about moving abroad for years. I tried for months to find the right place to stay. Does it lock, is it noisy, is there a washer, how deep is the pool, how far the beach, is there a garden, transfer not too far, air con etc etc. What if we had a Reilly’s place for us and other families that is equipped and I mean truly equipped for our needs. Could that be it? Could that be something that Reilly could grow with and eventually run himself?

Who knows but the seed is planted and you know we love a challenge….

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Villa v Hotel with Reilly

Villa wins hands down!!

I swore after our last holiday in a hotel I’d never do it again. Why? Simple because I just don’t feel secure. I can’t relax, I can’t sleep. That’s not a holiday. Shane slept on a mattress wedging the door shut to stop him escaping and me against the balcony. Too many people didn’t understand him, the dining room was a melting pot of noise, people and smells. Just too much which resulted in me being in the room by 7pm every night with a pizza.

This time we have space, masses of it. 3 bathrooms. Gates and most importantly no people. We are about 20 metres from the beach and a 5-10 min walk to supermarket and restaurants. It’s idyllic. This is not where you come to browse the shops for ropey bracelets and fridge magnets (which I love). You can get a bus to Marbella or Fuengirola for 2 euros the bus stop is a 10 minute walk. You can hear the sea when you are in bed and there’s not another sound. 30 mins from Malaga between Fuengirola and Marbella.

I love it but for me I’d like a little bit more closer but the trade off of no overloads for Reilly is a winner.

NaN in the Costa Del Sol

We are here it’s day 3!

We were up at 4am on Friday to catch a flight to Malaga. I’m always terrified that Reilly will have a meltdown but today has been a breeze.

I’d already downloaded the autism passport from the Airport website and filled that in but to be fair never showed it to anyone. We timed it so we’d spend as little time in the airport as possible. We checked in with a lovely lady called Abbie who told us to go to Gate 19 at 6am if we wanted a bit of peace 👌 and were directed to the passenger assistance booth to pick up a sunflower lanyard.

The lanyard meant we could pass straight through fast track security. No waiting, no queues. We just had time to get a few bottles of water and some sarnies for the plane and we were off.

He was brilliant on the flight. I had ear defenders, iPad with Tory Story 4, Life of Pets2, a series of Postman Pat and a series of Thomas. There were a couple of coughs which caused him to scream and scratch himself. It’s awful I really don’t know how to solve it.

Our villa is 20 metres from the beach so makes it easy to run between pool and beach, he loves them both ❤️. All in all a great first day but the night was horrific. The change in surroundings, sensory issues etc caused Reilly to become incredibly anxious. He cried and googled, home, airport, Jet2 for hours. I admit I googled flights after 2 hours. He was broken hearted 😩. I managed to calm him and get him to sleep. He woke the next morning happy and he’s been that way ever since (apart from a trip on the bus to Marbella with the loudest cougher on the Del Sol).

I also have an announcement…. as you all know I have never heard him say Mam. Well now I have, it sounds like NaN but I’ll take it. 😊 I’ve heard it at least 30 times in 3 days. When he wants me or needs something it’s NaN ❤️ he said it when I was away last week while looking in all the rooms at home, I was gutted I missed it and felt really emotional when Shane text me 😊. He asked him do you mean Mam and he signed yes. So if you see me I’m not his granny or NaN I’ve just had a hard paper round 😂

Shane’s Mam leaves tomorrow so it’s just the 4 of us til Friday. We are working shifts as normal so we can get time with Ellis alone, I thoroughly enjoyed my meal on the beach last night it’s Ellis and it’s Shane’s turn tonight. Reilly is more of a Burger King kind of guy ❤️

The lads are spending some great time together in the pool and Reilly copies everything else does which is lovely to see. Holidays are worth their weight in gold for us. This interaction just doesn’t happen at home.

Looking forward to the next few days 😊

From the other side

I recently asked my friend Dave if he would be interested in writing a guest blog for The Life of Reilly. He’s always been fascinated by Reilly, I’ve watched them bake, prepare food,set up tracks together and Dave is always looking for new ways to communicate and engage with him. I have never considered the other side. The guilt others can feel when they see their own friends struggling. This blog has had me in tears. ❤️

Being a parent can be tough. We can all agree to that. There are times of great joy and pride, especially in the early years when they begin walking, talking and doing all the funny things toddlers do. Even the ‘terrible twos’ and ‘awful fours’ didn’t detract from it too much for me. I was just revelling in being able to have simple conversations with my little boy and other than the regular tantrums he was generally really nice to be around.

The other end of the scale, of course, is the teenager. Where they talk to you in grunts and go all moody for the slightest reason. I can deal with that, as foster carers we’ve been dealing with moody teens for 20 years. You have a spat, go your separate ways and still end up having a decent conversation with them later… if you’re lucky.

The bit in between this is the most frustrating. The 5 to 10 year old phase. The bit where just the sound of their voice saying ‘Maaam!’ Or ‘Daaad!’ for the thousandth time that morning grates on you so much you keep thinking ‘Jesus Christ I wish he’d just shut up’

It’s more than that of course. It’s the communication itself that winds you up. The incessant whingeing, demanding, trying to get each other into trouble, being awkward, the backchatting… the list goes on…

I don’t mind admitting that quite often I’ve wished that, even just for just one day, he would just stop speaking.

But then… I’m the father of a neuro typical child and when he is quiet, I can enjoy that silence, knowing that he’ll be bending my ear again in a little while.

The amazing family at the heart of this blog have been there from the beginning. Clare, my wife, and Christine were pregnant at the same time and we worked together before and after the boys were both born. We socialised and holidayed as families and watched them grow and develop together… until they didn’t.

With heavy hearts we watched this family go through the realisation process and diagnosis of Autism for their son and with a sense of guilt, we watched our boy develop rapidly whilst Reilly just… didn’t.

Watching Reilly’s autism take shape was heartbreaking. His melt downs and challenging behaviours were one thing but the fact he is non verbal is the thing that has always affected me deeply. Watching him and his parents not being able to communicate is what makes me give my head a wobble when I get frustrated about the incessant kids voices around me. I know that Christine and Shane would give anything to have Reilly shout Mam or Dad just once never mind a hundred times. To have a simple conversation about what he wants for tea or where he wants to go but most importantly, to be able to ask him what is wrong when he gets upset.

In recent years things have changed. We moved out of the area and our working lives have gone in different directions which means we don’t get anywhere near the time together that we did or that we’d like but it does happen and it’s always a joy to have them around.

I’ve never found being with Reilly difficult. He’s different that’s all. Challenging at times but it’s never disturbed or frightened me. It’s never dissuaded me from trying to interact with him on the most meaningful level I can. I try every time I’m with him and mostly he seems to ignore me… and that’s ok.

Recently though, it’s been different. We know that he’s beginning to communicate in a multitude of different ways and every little win makes my heart swell for them…

Out of the blue last week, Reilly asked to come and see us and as always it was nice to have them here but what happened that day just blew me away.

Reilly went to our kitchen and I went with him as usual, just to see he’s ok and try to gauge what he might be after. He opened our food cupboard and our conversation went as follows.

Are you hungry?

Reilly made the sign for Please/Yes

Ok… what would you like?

He went to the other bench and tapped the bread. Now I know Reilly loves toast so…

Do you want some toast?

“Yes”

What would you like on it?

He opened the cupboard and pointed to the Nutella.

Ok, toast with Nutella?

“Yes”

I was already amazed but I wanted to see how far I could take this with him. He went to the table and took a seat.

Do you want thick bread Reilly?

“No” …spoken, not signed

Would you like butter on?

“No”

So I made him his toast and, after confirming with Christine on his current preference for shape and construction, I put it down to him.

He signed “thank you” and our conversation was done and I’ve never felt so overjoyed to talk to someone, to communicate, even on a simple level with someone I thought I might never be able to. This was a full blown conversation too. Question and answer, conclusion reached and he was happy.

I, however, was over the bloody moon.

We take communicating with our children for granted. We get frustrated at it at times but I never seriously wish my son would stop speaking… I know how hard it must be and I wouldn’t wish it on anyone.

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?

Time out – Fringe

I’m lying in bed in Edinburgh reflecting over the last couple of days. I love Edinburgh Fringe firstly. It’s buzzing. There are people from all walks of life from all over the world in this brilliant arty melting pot.

I’ve used the last couple of days to spend time with Ellis my 12 year old. Whisk him away from the absolute carnage and chaos our home has become since the schools broke up. Reilly has been pretty reclusive so at home A LOT! That becomes a problem for myself and Ellis as he hates us eating, weeing, coughing and so on. We do our best to avoid meltdowns for our own sake as well as Reilly’s but sometimes it’s just impossible. We are back to 2 plates left in the shell of a kitchen we’ve just started renovating.

Time is priceless. We have eaten meals out, chatted, shared secrets, watched TV, caught a show and Ellis has watched our show numerous times. This is so beneficial. He sees how the parents are trying their best. He sees how the sibling loves her brother but feels guilt at the resentment she feels. He sees how difficult life can be for Reilly.

I have loved my time with him. I’m having a rough time at the minute and this was much needed. It has made me reevaluate my own life and how I spend my time.

The play is smashing Fringe. The feedback is outstanding. I’m so proud to work with such incredible people. I watched a lady sob in front of me today during the performance. I watched her nod in agreement at every familiar phrase and reach for tissues in moments of poignancy. I got out the door first at the end of the play so I could give her a cuddle. She needed it and so did I.

One week to go. Come see it at https://tickets.edfringe.com/whats-on/life-of-reilly xx

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'