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?

Yoga

A few weeks ago I signed up to a beginners yoga class.  I practise mindfulness daily and love it.  It helps ground me a little and puts the brakes on the internal chatter my mind partakes in constantly. Yoga seemed to be a natural progression.

Myself and Kelly got there for class at 6.30 all the teas had been prepared before I left, my dad was watching Reilly until Shane returned so happy days I was off to de-stress.  We decided to try Yoga Hens after a recommendation from a friend.  The room was dimly lit with candles, warm and was playing some ambient music.  Perfect.  The mats were lined up on the floor with little cushions and blankets, maybe I was going to get some kip as well this is just win win win.

My stress levels of late have been through the roof.  Half term saw the shoot for The Life of Reilly as well as our first charity heart screening weekend.  That’s a lot of juggling for the work life balance.  Ellis my 11 year old has been stressed to bits because of SATS, SATS for gods sake.  I said to him do what you can and that’s it.  Do not worry about results because I won’t.  He is also feeling the burn at the moment from Reilly and his superglue attachment to me and it’s highlighted the need that we need to work harder at our family dynamics as it is far too easy to just keep Reilly happy as we can and siblings can and do suffer.

I ran out of melatonin and had none for most of half term week.  You can never get it next day its always a few days so that meant that I also had little sleep.  I do all I can to try and keep stress at bay.  I’m eating better, i’m going to the gym, I meditate every night but I’m still incredibly anxious.

I was excited to start yoga but I made a fatal error.  I had beans on toast for my dinner before the class.  I have never ever in my life been that stressed.  I actually pretended I had cramp in my foot to get out of my downward facing dog because an upward facing fog was about to descend on the room.  Awful.  I was shaking with fear on letting one slip.  Next week there will be no beans or pop.

All in all I loved the experience, I’m incredibly not bendy to my disappointment I wanted to be all goddess like and graceful. Instead I fell off balance constantly but tried my best, I muttered Jesus Christ more times than I fell over and felt sorry for the lady behind me having a massive clothed moon in her vision for most of the class.

I’m hoping my path to enlightenment is a quick one and I can be all chill and wear lycra without fear.  Can’t wait until next week and see what we have in store.  No beans I promise.

finished-yoga-didnt-fart-once-29623-alt-27

 

and relax ….

Tomorrow is Ramside Hall Eve. I cannot wait!

I have felt more stressed than normal over the last few weeks and there is no better time to get away from it all, even if it is only for one night. This is my christmas present from Shane.  When anyone asks me what I want for birthdays, christmas etc the answer is always the same, let me get away for a night, free from responsibility and some time to breathe. I will also take the opportunity to meet up with the awesome Autistic Advocate for a coffee and discuss moving things forward with all things autistic in the right way.  His blogs blow my mind and give great insight to actually autistic lives.

Managing stress is something that I’ve done since I can remember.  Anxiety shacks up with depression in my mind and doesn’t even pay rent, unwanted squatters who I just cannot evict.  Sometimes they are noisy, other times we get along dandy – at the minute they need an ASBO.  When there is a lot going on they crank up the house parties and stop me from sleeping.  Couple that with the fact that I’m an incredibly busy lady with 3 boys, 4 if you count my husband and its no wonder.  It’s not unusual for me though and i’ll ride the wave like I always do. This too shall pass, might be like a watermelon from a birth canal but it will pass.  I’ve always been very open about the fact I take meds and have done for years.  I really wish there was more discussion around it.  How the hell are people supposed to know that they aren’t alone when we are still speaking in hushed tones about it?

Being Reilly’s Mam brings its challenges but I can tell you something for sure my 11 year old NT child is stressing me out wayyyy more than Reilly at the moment.  When did 11 become the new 15?  I even offered to rap on his youtube channel to cheer him up yesterday and was told to stop trying to be peng.  Because I’m down with the kids I know what that means but I played on it and said pardon i’m nothing like Pingu.  No laughs just a look of utter disgust that reminded me of myself at approximately 13 with my awful perm and vile attitude to match.  He’s his mothers son that’s for sure.

I try and relax as much as I can.  Mindfulness is a huge part of my routine and EVERY night I unwind listening to dulcet tones and try to breathe correctly, most of us don’t.  It works you should try it.  I’ve signed up to yoga classes.  I’ve wanted to do this for years and always been a bit scared of the odd sneaky pump making its way out during a downward facing dog. Fingers crossed I can behave.

Nights away to just be myself are so valuable I cannot put it into words.  I get a bed to myself, MYSELF!  I get to be alone, I can go in the bath with additions of toilet brushes, toilet rolls, dog shampoo, Lightening McQueen, underpants etc. I’ve even treated myself to a bath bomb, this one will not go down the toilet like the others.

I will eat from a china plate, not a plastic Christmas plate and I will eat at a table and not the 10th stair up where I cant be seen shovelling it in like a jazz band drummer in a bid to eat while its hot without it being thrown across the room like a foody discus.

I will swim like an overweight mermaid and sweat in the sauna. I might even read something that’s printed in an actual book!  The luxury of it all!  I don’t want any phone calls unless its life or death.  I don’t know or care where the socks, shinpads, PS4 controller, insert your own here are.

I will try and forget that I have recently acquired some new wall art up my stairs and in my bedroom courtesy of Reilly and a yellow hi-lighter, to be fair I really don’t give a f@ck about this if I’m honest.  Pick your battles.  This is an easy one and will match his earlier works of art dated circa 2015.  It’s just another job to add to the list of never ending jobs that never get finished at home.

So Ill return on Saturday hopefully refreshed and ready to take on the filming of the short for The Life of Reilly on the 11th & 12th. I’ve attended many meetings lately about it and i’m super excited to see it come to life. This is just the beginning for The Life of Reilly. Where it stops nobody knows.

(I should really add that I usually don’t sleep when I’m away, the intention is there but I lie in bed wondering if Reilly is ok, how maybe I shouldn’t have went and what the breakfast will look like).

 

 

 

 

Holiday for one?

When a holiday is not a holiday. That’s what my last week has been. Reilly’s need to be beside me 24/7 has excelled this week. Probably because he’s out of his comfort zone but by Christ it’s hard work.  He wants me ALL of the time which sounds really cute.  Sometimes I can give it the smug one ooo look how I’m his favourite then other times I could pull my hair out to be alone for half an hour. It’s exhausting. Not only does he have to be with me constantly he has super enforced his rules of no one eats before him or takes a drink. If I’m caught having a sly swig of Diet Coke WW3 erupts.

Shane has tried many times to lure him away. In total in 6 days I’ve had my morning out with Ellis plus 3 hours on a sun lounger with my book. The time we are all in the pool together is great as I’m still there but try sneaking off to look in the tat shops not a chance. He’s got a built in radar that goes off everytime my invisible tag drops below 6ft radius. Other kids are invisible to him, even his grandma and granda have barely had a glance from him. The big bonus is we’ve had time as a foursome to splash about that never happens at home. Thank god Ellis has made some amazing friends to go on the slides and play footy with.

He has once made the kids disco, the one where you absolutely must not dance on the stage or go behind the wall where the equipment is 😬 but when he’s done he’s done, no negotiation thats near impossible with a non verbal child, he’s off as fast as a whippet back to the room.

My time for relaxing has been when I’m back in the room with Reilly at 7.30 after his chips. Tonight is 7pm and he’s sat with his lego on the floor happy as Larry. I haven’t got as far as getting into night time clothes. We’ve been for a walk to a cute ice cream parlour and Shane attempted to get him back to the room so I could sit down with a drink and eat my tea. I hadn’t even got back from the pop machine when he appeared at my side and tried to tip my plate for having the audacity to get my food before him. Screams, pouring pop on himself and throwing chips to the back of his mouth later I abandoned ship for the sake of the other diners and my own sanity , not for the German cow who glared at us the whole time for spoiling her Torte and came back to our room. All calm restored. Peace. Silence and half decent wifi. Just how he likes it, im fond too

I said after last years never again but we all love the sun and the beach and the food how do we find a balance? A villa I think.   Ellis looks forward to his holidays so much it’s unfair for him to miss out so much.

So holiday for one anyone?

Brilliant inventions and preventions

This week has been eventful,  lots of good things lots of bad things.

Ill do bad things first:

BAD THINGS

  • Reilly went missing.
  • Almost died while running the streets looking for him (not strictly true but felt like it).
  • Hours spent lying awake beating myself up re Reilly escaping.
  • Nephew has cardiac arrest.
  • Reilly broke my favourite moroccan cup.

WHATTTTTT back it up!  My nephew did indeed have a cardiac arrest on Wednesday night.  We have been kind of prepared because we knew he had an inherited heart condition and he has an ICD fitted as a prevention if cardiac arrest happened but always hoped obviously it would never be needed.  The ICD saved his life on Wednesday.  He’s back home and just fine.  If I  ever needed a wake up call to stop moping and seize the day this was it.

What I find strange is that Reilly’s behaviour was different the day after he escaped and the day after Will’s cardiac arrest.  I think he could read my emotions I really do. Normally he scratching at the door to be out of the house at the first opportunity, kicking off because i’ve had the audacity to take a bite of my toast before he has and the likes.  Nothing. Just watching Thomas, being cute.  It was a godsend because I had very little left in me to deal this week.

Will loves dairy free chocolate if you wanted to send him any as a get well soon I can pass it on. 😉

GOOD THINGS

  • My nephew is still alive.
  • Found Reilly unharmed and unaware of any fuss.
  • Have lost 5lbs since Monday with my new regime and loving it.
  • My neighbours and friends are awesome.
  • Made a green thai curry and it was restaurant standard.
  • Invented some products for Dragons Den.
  • Reilly can write.

The last one has absolutely blown me away, out of the blue Reilly has very carefully started to write.  In my darker days I often think will he read, write etc and I think we have this one nailed.

His favourite words are Reilly, Jet2, Frozen, friends and Argos. (scroll to the bottom to see him in action).

In all my hours lying awake I tried to think of solutions to children running off this is what I came up with:

  1. I decided I would buy a drone and if the little bugger does a runner I can shoot it up into the sky and survey the surrounding areas.
  2. I would  design a retractable leader type thingy but for children and attach it to Reilly while out and about.  Maybe the back of his trousers.  I have a feeling that Peter Jones and Deb Meaden might call me an a-hole and say they’re out but come on middle of the road or a bungee chord I know which one Im going for. (Have found something similar already emailed them for a go).
  3. This is my favourite one. A Stopping Trolley, like a shopping trolley, the tartan kind grandmas have but deeper and when Reilly refuses to walk I can stick him in it with my shopping and he cant’t get out.  Obviously a hole in the top to keek his head through like the top of a tank.  No more tired arms or escaping from pushchairs if you use them. I’m in!

Back to school on Monday 🙂

x

 

How was your day?

Well i’m back i’ve been AWOL for approximately 2.5 hours.  Reilly as per usual did not want to come in from school.  He had a huge screaming fit, got outside lay on the path and the likes so I wrapped him up in his big (filthy covered in ice cream coat not his nice Barbour one) and took him for what I thought was a jaunty walk and a bit of a wander.  I was equally as unappealing in my coat also covered in ice cream but its warm so doesn’t matter right?

Wrong.

I ended up on Reilly’s favourite bus the X8 going to Newcastle, minging, no makeup and hair like a haystack.  It’s ok though I thought he’ll just stay on it and come straight home.  I can sit on a bus for an hour with no phone, no problem.  Did he stay on the bus?  Did he bugger.  He joined a queue for a double decker to come home but the concept of waiting for the driver wasn’t cutting the mustard with Reilly and I went from hood holding, piggy backing and carrying him to stop him running off while we waited the 7 minutes for the driver to finish his pie or whatever he was doing.  Just as the bus doors opened and people began to file on Reilly takes off.

Legging it through Marksys like his life depended on it.  Lightly brushing past the valentines displays of prosecco and chocolates as he went.  Laughing at the top of his voice. The mixture of my big, icecream covered winter coat, running after Reilly and the bright lights start to make me feel a bit panicky. My trousers a s always are hanging down like a gang members from L.A. but I catch him just as he’s about to get in the lift.

Oh come on Reilly let’s go and get the bus and go home for a kinder egg, pizza, drink, build a track, do you wanna build a snowman?  Anything to get him out.

If he could speak I imagine he said get stuffed loser and wriggled out my grasp and we were off again.  I knew where he was headed, my worst nightmare.  Fenwicks Toys a) i’m skint and b) it’s horrific.

We got in the lift with a couple of beautifully dressed young men.  I glanced in the massive mirror and was instantly aware of how rough I was looking and the hem was down on my trousers.  Reilly pressed every button on the way up opening and shutting the doors and pointing at the uncomfortable young lads shouting toooo at them.  To tired to explain.

After attempting to carry the largest Hot Wheels set to the counter about £80 and me putting it back 5 times he gave in.  He lined up some Thomas trains and ran away from Peppa Pig.  He decided on some Finding Nemo Mashems and 2 tiny minions figures thankfully in the sale.

Now Fenwicks isn’t contactless.  If it was I’m laughing Reilly beeps the device and then claps as he’s such a good lad.  Inserting cards and punching numbers is a whole new ball game that always ends in huge radges and my card almost in two. Lad on the till was lovely thankfully and didn’t mind the repeated attempts to get it right.

A more controlled walk through Marksys back for the bus, dying for a wee but not a chance on gods earth was I attempting that.  The bus is there in the stand HURRAH.  I flash my return ticket. No Christine Reilly isn’t having that he wants to pay and because I am that stressed, hot and tired I give him a 50p and ask the driver to let him put it in the 50p holder.  Bus ride home was perfect he snuggled into me kissing my cheeks for the whole journey, back seat left corner 😉  SO we are home.  He’s eating a pizza and watching a Thomson 767 being spray painted for the 20th time.

So how was your day?

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Metro station frustration 

Second shitty weekend in a row! Last week I posted that Reilly had been horrific and didn’t even have the energy to write why.  We’d been invited to our very lovely friends little ones party at Olives at the Station in Whitley Bay.  Luckily I’d spoken to Lou and said it was my worst nightmare taking Reilly to somewhere busy and would probably spar wide, thank god they totally get it.  Shane on the other hand insisted we make the ginormous effort, seize the day and just do it. 

We arrived 30mins before the party ended because Reilly was in such a fettle we simply couldn’t have gone in.  He’d been up since about 3.30am and was tired. So we took him on a diversion via Smyths which is always a winner. He loves to wander and examine all the aisles.  


Just 15 minutes we thought, we can do that.  He wants to go in he seems happy enough.  We were in approximately 4 minutes when he decided he wanted out.  He’d seen a new land on his way in – the metro platform and by Christ he doesn’t do things by half.  He ran straight in and kicked, screamed and squirmed because he wanted to sit on the platform edge.  Don’t think for one second he would sit there he’d be off and down the tracks quick as a flash. So much to the disgust of other people waiting to get on I wrestled with this slippery little eel to get him out of the station. This involved dragging by the feet, collar, carrying, you name it I tried it. In fact I’m still waiting for the do you know this woman video to appear on social media.  

I had no bag, no money, no phone or I’d just have got on the damn metro and went for a ride. Shane had pretty much the same experience when I handed him over with tired arms.  Straight home we thought oh no not that easy. Reilly WAS NOT getting in his car seat. He was poker straight and shrieking for 25 minutes.  I eventually got in the back and held him in a bear hug, yes I know that’s not allowed, no there was no other way. We tried to bribe him with some chicken nuggets and a mcflurry. Bribes don’t work with an autistic child in general but anything was worth a try, I ended up wearing them like a new Vivienne Westwood.  Still screaming when we arrived home myself And Shane took it in turns to guard the car (which he wouldn’t get out of) until he calmed down.

Lovely to see our friends for 8 minutes though.

Yesterday we went to The Range at the Metrocentre so I could get a light shade.  There’s two of us how hard can it be? Jesus never again. I appreciate kids hate shopping but thought for 10 minutes it was doable. No Christine no. In a fatal error which I cannot believe I did again I took my bank card from my pocket and proceeded to pay for my light just as Reilly rounded the corner in a carpet carrying hold by Shane he’d obviously been up to mischief.  Reilly loves to use the bank card and started to scream at the till, REALLY REALLY loud.  Throwing himself down on the man behind us feet in a show of defiance that he wasn’t moving.  Mostly miserable, judges faces glaring at us from various checkouts.  We decided we would by 3 cream eggs for a pound and let Reilly pay with Shane’s card. Maybe that would stop it and Reilly would be happy? Worth a try right?

Reilly took Shane’s card bent it in two and continued to scream.  Only one thing to do in this situation and that’s exit the building and hope for the best. Car was parked about a mile away and I wanted to cry. 

Today we have spent the day in pyjamas watching paw patrol and looking at aeroplane engines and it’s been blissful, apart from the drums. Awful.

How was your weekend? 😂