The Life of Reilly

I had a great night last night at our 80s fundraiser. Seriously it has to be my favourite era the music just fills me with nostalgia and happiness. A time of no stress or worry. A time when my brother Neil who passed away played soft cell from the room next door and my biggest worry was should I go for 1 or 2 bars on my pods. Good times.

My night was spoiled though as just before leaving My husband overheard my son Ellis who is 10 reacting to someone who said his brother Reilly had been referred to as a retard. Same old story though the person telling him couldn’t remember the name of the person that said it. Ellis was raging. Ive not seen this protective side to him before with regards to Reilly. Throughout the night I kept thinking about Reilly being referred to as a…

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The Life of Reilly

OK so I have something on my mind and I cannot shake it off.  Usually around this time, 10 pm when it sneaks up on me and keeps me awake.  It’s really simple but it’s a question that millions of parents ask themselves everyday, it’s normal to worry about your kids futures but some of us parents have to put plans in place now, just in case.

The question is “What will happen to my autistic son when I die?” then there’s the cheery followup of “What happens if me and my husband are killed in an accident tomorrow?”

I talked about this with my Mam the other day, she was actually crying just thinking about it (may have been the thought of inheriting Things 2 & 3 for good, jury’s out on that one).  “Oooo I can’t even think about it” she said.

Well fact is we have to.  Alex…

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My boys, my boys – a post by Shane 

The Life of Reilly

My boys, my boys. It’s easy written but not as easy to parent, I have Ellis a colossus of a 10 year old, hyper sensitive, handsome, out right cheeky, defiant, and struggling to find his place among his peers with £100 sneakers, smart track suits n tightly trimmed hair.

I adore his confident swagger when he steps on the football pitch; he’s a match for any lad wether it left,right foot, chest or head he’s a giant, a leader, a combatant he’s a source of pride; I look back in time and see his uncle Neil. Neither mobile as a Lat but like a chess master he’s 3 passes ahead.

I adore this confident side of the lad, the difficulty he battles is his peer group, is he cool enough, has he got the latest gear? What’s the craic with his brother?

Now I make no apologies for the anger…

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May contain swear words

The Life of Reilly

Right I’ve been making some observations the last couple of days and what I have realised is it does not matter whether your child is autistic or not people judge others hard on their parenting skills. We get it so often now it’s part and parcel of daily life.

Now unless your children or grandchildren have NEVER thrown a cup on the floor, starfished in a restaurant, spoilt someone’s game of pool or got on the stage while the act is on then for gods sake take your judgemental beady bastard sly eyes and look the other way.

It doesn’t matter what nationality they are they all tut – yes mr Dutch man smugly tutting at the little girl who just dropped her plate we all know it was your daughter that closed the pool for 3 hours this afternoon after they took a dump in it, she may eat…

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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:

Today was a zero out of ten

Today has broken me.

 It started with Reilly grabbing my keys and darting straight across the road and into my poor neighbours house. Me looking like I was a couple of days early for Halloween traipsed across to get him back. Easier said than done. He loves Elaine’s house and I think he’d happily stay there all day if I let him. I coaxed him out with the promise of going bouncing, I’m guaranteed to get him moving with that and it worked. 

We get to Airbox and he’s pinging about as per happy as Larry and decides to go upstairs for a drink, this is fine it’s part of our thing. This time though he gets his eye on a family, the little girls are eating chicken nuggets and he makes it known he’d like the same. So far so good. I get our drinks, order the food and then I do it and I know he’s seen me and it’s too late. What had I done? I put my card in the machine at the till. I take it out, we cancel the sale so he can do it. No Christine that’s not how it works he does it first or he’s raising the roof and by god he did it well. 
 The staff as always phenomenal, some of the other parents not so much. Ellis starts to cry at what’s happening and is aware of other people giving us the look to which I proclaim loudly that I couldn’t give a flyer who is looking at Reilly they need to look at themselves. He tries to throw the little girls plate with her chicken nuggets on, I apologise profusely, they get it, they are cool thankfully and Reilly just well screams. I get on my knees on his level pretty calm considering but he’s having none of it. 

His food appears and he calms down we finish off and leave. We get home and he wants to go in my neighbours house again and I spend half an hour outside fielding him from running across the road better than a GK in netball. 
We’re in but he wants out. He tries various escape routes checks windows, doors etc and proceeds to nut my front door in hopes of creating a new way out. This I can’t deal with. It makes me anxious, breaks my heart and teeters me on the edge of a panic attack. We use distraction, put on DVDs, tell him Santas watching clutching at straws, I physically move him as I’m terrified that he will seriously hurt himself. He actually shakes and teeth chatter in this state. It goes on way longer than I anticipate and my morale is sagging like my trousers that Tarly is attached to pulling with his teeth, playing but making my steam rise that little bit higher! 
The rest of the day has been spent up and down like this. He managed to get out in full minions get up darted past Ellis when returning from his dog walk, straight across the road, in the house and upstairs into bed. More coaxing and eventually I had to bite the bullet, grab him and run.  
He spent the next 20 mins in his minions onesie and my knee high boots in my garden like a new feral superhero who I christened ‘The Wader’ as that’s what my boots looked like and I have to laugh. 
I have never been so grateful for melatonin time tonight. Plates have frisbeed, drinks thrown and Just before coming upstairs with him I went for his drink as always I came back into the living room and he was emptying my Hoover cylinder onto my dining room table. Just what I wanted. 

An Alvin and the Chipmunks The Squeakwel later watched from a makeshift bed on top of his drawers for some reason, I’m not arguing he’s still and he’s quiet and I needed that.  

He’s asleep beside me now, he looks like he was heaven sent. Everytime I try and move to get my cuppa he pulls me back so our noses are touching and I love it. I love the bones of this kid but by Christ I’m glad to see the back of this day.  Today can kiss it. 

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.