50 shades of green in Ireland

I’m in Ireland! We decided after our semi disastrous Ibiza trip we’d try something closer to home with no airports.  Driving from Newcastle to Stranraer with Reilly was ok, not great, we’ll leave it there. Scotland is stunning, I’ve only ever bounced along the Royal Mile and drooled over Outlander. I’ve much more exploring to do.

I was dreading the ferry. I’m anxious most of the time and the thought of who could I save first if we sink despite the fact that I can tread water for all of 5 minutes was haunting me. I needn’t have worried. The boat from Cairnryan to Belfast was like a cruise ship! I was expecting water pounding off the windows, people being sick overboard, Reilly in the lifeboats and dropping anchor.  Instead we were greeted with Alvin and the Chipmunks in the cinema, free PS4s, soft play area, free internet and swanky lounges. Brilliant- what wasn’t brilliant was the folks staring at me trying to calm a screaming Reilly while they stampeded for the stairs to get back in their cars I only said ‘what the fuck you looking at?’ three times so not too bad I suppose.

We stayed with our fabulous friend Marie and her family in Ardoyne Belfast and Reilly thoroughly enjoyed the parks etc especially throwing my brand new cardigan into the lake. I met an old school friend who jumped ship to Ireland 30 years ago and now has a beautiful restaurant in Belfast called Harlem Cafe.   Reilly toured Belfast in an open top bus while we ate, I genuinely feared for Harlems crockery.  Jon Snow’s spotted = zero.

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Warrenpoint

Next on to Warrenpoint, car journey was hell on earth and I wanted to book a flight home. Reilly tried getting out of his car seat at least 20 times. Tried throwing my shoes etc out of the window and screamed every time I coughed which is approximately every 2 minutes at present. Shane’s granny was born in Warrenpoint and it is outstandingly beautiful. We booked a chalet with the kids in mind, more space, football etc.  When we arrived we were greeted by the owner Jennifer now what would the chances be that she runs her own autism charity MAC Making a changeMAC NI FACEBOOK PAGE helping autistic people enjoy the outdoors with water sports, balancability, orienteering, ziplines, archery, driving range etc  as well as programmes working with siblings, it’s amazing!  And just an hour’s drive from Belfast. It was an instant relax for me. Jennifer gets it, she knows.  Reilly even let himself in their house today and went upstairs for a lie in their bunk beds! Chalet is outstanding and I’d gladly stay longer if I could.  Beech Tree chalet Warrenpoint for anyone interested. We WILL be back.

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Prettiest playground in the world. 50 shades of green.

Reilly has loved today we went to Ring of Cullion which is set in an area of outstanding beauty, huge park and forest walks to the Fairy Village and Giants Lair. Lots of fresh air, stunning views and a bit of magic.  Ellis however not so keen. Bust his lip on a pull up bar and I quote I am 9 year old boy if it’s got fairy in it I’m not interested in it. I’ll ask again in 7 years I bet the response is different!

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Back to Warrenpoint and a play on the beach and in the park for the lads. Sitting on the grass having an Orangina when Shane remembered it’s our wedding anniversary, I’d forgotten. We celebrated by going to the chippy and betting the lady behind the counter she could have the contents of Shane’s wallet if she could cut Reillys hair. She’d have been disappointed if she’d won.

Happy days all in all Reilly is handling his holiday like a boss. Ellis and Reilly are getting much better at being in the same room and I’m a bit smitten with Ireland.

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DIY = marital misery

Anyone else’s husband or partner an absolute dick when it comes to DIY?  He’ll read this -I’m not bothered.

Shane’s Mam has bought Reilly as early birthday present, he is 5 on the 29th.  Partly to save my sanity and stop us from having to wander quite so often, i’m not sure my back can take the piggy backs.  My friend Coleen saw me the other day and said I passed her house and was actually walking with my eyes shut and looked like the most tired person she’d ever seen.  Walking with my eyes shut – bit like walking with dinosaurs but heavier.

Anyway an enormous swing, slide and see saw set from Smyth’s was collected today and they went straight into the garden to put it up regardless of the rain, Reilly loves the rain and he loves a screwdriver in his hand so he’s happy.

1 and a half hours later and its not fitting together.  I have never in my life heard so much swearing, grumping and miserable bastardness in all my life.  The neighbours will think we are complete clampitts or even more so than usual.

Go in the house if you’re just going to stand there.  Don’t you speak to me like that you utter tosser.  Back and forth like a Wimbledons singles match.

Turns out they have sent a wrong joining piece, which I just so happen to spot so it was never going to work regardless of which way round it went.

Poor Reilly is sat waiting expectantly for this thing to go up while Shane has had to wing it back to Smyth’s before it closes queue more grumping.  I just hope to Jon Snow they’ve got the right piece in when he gets there.

I’m one for picking my battles and this wasn’t it.  Putting a swing up probably doesn’t constitute a decent excuse on the divorce forms but jesus it must come close.

#prayforsmyths

My groundhog day

Yesterday was one of those evenings where I could literally forget that Reilly is autistic.  As per usual he came home from school and refused to come in the house.  This is the norm now and I embark on a rambling trip where he takes the lead and I follow.  Normally we are put and about for about 3 hours.  Park, bench outside the chippy to look at cars, McDonalds for an ice cream, back to park and so on.  Not yesterday though we headed to the bus stop and depending on which side of the road he chooses I know where he wants to go.  No running off at the bus stop, no pushing in front of people to get on the bus, sat on the same seat (always backseat right hand corner)  and only pressed the bell twice to get off.  So far so good.

Ace Playce is a large soft play in Killingworth which Reilly likes and you get their tea for a pound so happy days.  He played, really played on everything instead of just the one slide, he came for his tea when he was asked, he crashed the dance class and joined in with the pom pom’s (the staff were fab when I explained and said he could stay).  He put his shoes on when it as time to leave and only tried escaping once.  Where was Reilly?  The one that keeps me in a nervous disposition at the very thought of being out in public. I like this one.  I love them both but this Reilly is so much happier.

Also as part of the route we go to Morrison’s and stand and look at the toys for 20 minutes.  He bought a Robofish Marlin from Finding Dory and then was happy to leave!!

Bus home back seat right hand corner, 3 bell presses and walks home holding my hand.  Straight in the bath with Marlin and unfortunately thing 1’s clay facewash.  Naked bed bouncing (for Reilly), a few parachutes off the windowsill and asleep for 8.30am til 7am this morning.

I will take yesterday as my groundhog day if I could.  Really enjoyable, no stress kind of day.  I’d like more.

Let’s see what tonight’s antics hold!

The holidays are looming like Harry Potter’s dementor’s but maybe mint green with caps instead of hoods.  We can do this parents how had can 6 weeks off be ? cough cough said no ASD parent ever.

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Batten down the hatches

What on earth have I let myself in for?  I thought when I started the blog that I would prick a few ears up and stop some of the Judge Judy’s in our local shopping centre shooting the death stare at myself and other parents struggling to keep their cool under a the gaze of an impending meltdown.  Safe to say I think thats happened.  I have been stopped in shops by people I do not know who recognise Reilly and tell me how much they love the blog and how its changed their opinion on what they thought were naughty kids and lazy parents.

Result!

I have been invited to schools to talk to other parents about The Life of Reilly which I cannot wait to get cracking with and now I am one of three Directors of Alphabetically Autistic.  How the hell did that happen?  I mean I was busy before, really busy!  I am one half of a very successful charity North East Hearts with Goals, that is more than a full time job but its saving lives and keeping our communities safe so I won’t be stopping that, I need Harry Potter’s time turner if anyone has a spare?  For the first time in my life I am going to have to apply some organisation in my life.

 I’m a professional winger, thats wing not winge.  I’m never prepared but I always manage somehow.  My home is the same there is never a pair of socks available and if you ask me where my passport is I couldn’t tell you.  So embracing this is going to be a challenge but I challenge I embrace wholeheartedly.

I’ve said it before I’m no writer – I got a D in English and C in French so go figure but I love writing this blog and will continue to do so as long as I can.  I’m writing this one still in my PJs  and watching Love Island on catch up on the Ipad, its not ideal but it’s how I like it.  We announced Alphabetically Autistic this week and the response has been tremendous I am truly looking forward to trying to make a difference to our autistic families, one thing for sure it is a family.  Nobody understands you like another parent of an autistic person.

The Life of Reilly will have its first showing in November.  First stop The Exchange in North Shields last stop Broadway?  Who knows whats around the corner I don’t but i’m looking forward to finding out.  Im really looking forward to seeing Glenn McCrory treading the boards as Reilly’s dad.

There’s a moral to this post and it is if you aren’t happy with something, get up and do something.  No one will hear you unless you make some noise.

ps Watch out restaurants because i’m not happy with the choice of dairy free food on your menus haha 🙂 

Please support us where you can.  Share our information, encourage people to get in contact come and see the play.  For more information or if you would like to reserve some tickets for The Life of Reilly please drop me an email at alphaautistic@gmail.com let’s make sure the first showing is packed.

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Ibiza 

   
Everyone knows how utterly terrified I was to bring Reilly away on holiday so here’s my quick rundown on how it went.

Firstly  I was pretty underwhelmed by Newcastle Airport special assistance.  I downloaded the form from their website as advised and took it with me.  Queue for checking in was pretty big but this assistance form doesn’t cover checking in first (this would be an enormous help to families with autism and other special needs). Reilly was eager to get up the escalators as always and get exploring so we had a few ahem moments while I stood to the side waiting for Shane to reach the desk.

We were fast tracked through security though so that’s great,  not the friendliest of faces but who knows what goes on in his home let’s not be judgey.

We headed for the quiet area near Dixons.  Not sure what I was expecting but not this,  it consists of about 20 seats no different to the others but to the side of Dixons joined to a cafe.  I will eat my hat if anyone in there needed assistance more a seat in a really busy airport.  One granny was tutting at Reilly on his seat backwards to see the planes. She got the death stare.  Not the best.

The girls from Jet2 were bloody fabulous! Reilly defo felt the love that day.
Reilly was dying to board.  He sat and watched the planes the whole time and was loving it. We got on last and took our seats.  He sat down at the window and put on his seatbelt, secured it and left it alone?!?  What was this wizardry? He NEVER keeps a belt on.  He loved it!! I didn’t even need a diazepam!  He fell asleep for an hour during the flight which was brilliant apart from the numb bum  cheek but to be fair I’d take 2 to keep him happy.  He woke on landing and proceeded to have an absolute wobbler as everyone stood up to get bags from overhead lockers, can’t blame him really. He was wild through the airport but luckily it was really quick and we were soon on our way.  I’m so happy it went well Ellis was so anxious about how others would react to Reilly it had made him incredibly anxious bless him.

He LOVES it! Typical no fear Reilly jumping on the water. We’ve been in the sea or pool from 9am til 6pm today he only came out to eat ice creams no 12,13 & 14.

Ellis and I look like lobsters despite factor 50 applied every 20 mins and Ibiza has the best sunset I’ve ever seen but guess who forgot her flash card for her camera!

 The cards I made with Spanish equivalents of I am autistic/non verbal have been an absolute godsend. Quick flash of the card and attitudes are turned on their heads.  The staff are incredible with him.  The lifeguard on the beach who caught Reilly trying to climb his tower says I must take him to swim with dolphins in Tenerife as that is good for autism 😯Families who were a bit dubious of us this morning have been buying the kids water pistols and floaters as they are fascinated by this little beaut who roars louder than a lion but looks like an angel. His tracking device is now on the canopy 2 floors below attached to his minion keyring 🙈.

Lovely people and fabulous time so far.  I’m off clubbing.  Not really , Im watching taggart while kids are asleep,  I’m so cool.

ps EAR DEFENDERS are a godsend if your little one will keep them on.  The plane was incredibly noisy once everyone stood to retrieve their bags from the overhead lockers.

Father’s day – Just another day?

I asked Shane if he would like to write something about Father’s day as an ASD Dad turns out he has written something about Father’s day in general.  Father’s day is one of them days we kind of just tiptoe past.  The kids make cards and presents etc but my Dad lost his son, my brother which obviously changes the day always makes me feel crap writing the card.  Here you go Dad stark reminder your other child isn’t here.  It’s shit to be frank.  You’ll understand as you read Shane’s post, it’s a deep one  …..

Father’s Day and autism is a hard write so I’ll be more expansive in my thoughts.

Father’s Day what’s it all about?  Is it a day you’re kids show their appreciation of all you do and don’t do or is it another money spinner for the retail market?  

A bit of both would be my way of thinking; don’t get me wrong I appreciate a card and a small gift as much as the next person but I see appreciation most days whether it be standing in the pissing cold rain whilst Ellis struts his stuff on the football pitch or when I let Reilly guide us to the destination of his choice. 

The look on their faces tell me without a word that I am appreciated.

Father’s Day to me personally is tinged with a few emotions so maybe that’s the reason I don’t place much emphasis on it; I like to use it as an annual stick to remind myself of what it is to be a father.

Growing up I never had the dominant, protective or caring father I try to be; bastard put us out to live in a refuge and we ended up in Annitsford!

All’s well that ends well though it’s been great place to grow up and the kids I made friends with in primary school are still my closest friends and confidants now.

This is where I come to behind every successful man is a good woman, in my case 2.

My mother struggled when we were kids but she put a good show up combining 2 roles mostly and for that I am eternally grateful and proud. The second woman is obviously the patron saint of Annitsford my wife Christine who helped me more than anyone will know.

For people who don’t know me I lost my first son (previous relationship) to SIDS and my life was pretty much like a car that kept crashing and being bodged over.

The pain of losing a child can’t be explained so I won’t attempt to, my existence was between drinking heavily, not being able to face people or leave the house and burying myself in my work to escape the hell I lived in with regular trips to counsellors and doctors.

Slowly pieces where put back together so I could actually function and the periods of hell became shorter in duration.

Fast forward and the hell is mostly over bar odd dark day which I know will pass; and I have a settled life with a lovely family all be it there is always something missing.

So back to Fathers day and the mixed set of emotions and why I don’t need the day  to assure me I’m a father; so never had a father figure to look up to or show me the way, my beautiful Georgie isn’t with me and father’s day is a reminder of a huge hole that is with me every day of the year not just one and so you can  maybe begin to realise why it’s just another day to me.

And every one of them days I appreciate the 2 woman that made me the man I am and most days I see the appreciation in my kids faces  when after a punishing 11 hour day at work I try to fit some quality time with the most important little people in my life my kids. They will never know the struggles my mother faced or have to sleep in a refuge because this father will always put their needs over his own.

Right Stella and Jameson’s time toodle pip!

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The world doesn’t stop by Shane

So you have child with autism, you have a diagnosis, you have a school place and even receive DLA.   All of the above are major obstacles you have to get over. Be under no illusions you will have to jump through hoops and in our case have to educate yourself on processes and have some heated conversations with the people who place the obstacles and hoops for you.Experience would suggest these people may frustrate the life out of you but they are not the enemy, they are trying to do the best job usually with hands tied by local authority budget restraints so remember to be firm but civil.

Budget problems are not your immediate problem doing the best for your child is the only priority to consider; never be rail-roaded or pressurised by authority as legally from age of 5 your child is entitled to full time education and no one knows your child’s needs like you do. If they can not provide the correct environment for your child they are failing they’re responsibility plain and simple and don’t be afraid to be vocal with that opinion.

So once you have got through the stress of the above its all plain sailing right? WRONG the world won’t stop turning the mortgage still needs paying, the car still needs tyres and the washing machine will still break down when you’ve no money. In short ASD is probably the biggest daily challenge the household will encounter but what happens to the family unit when bills need to be met?

In a nut shell it is very difficult to get a balance, if one parent works extra to make ends meet and provide a home that parent then misses out on the parental bond with the kids and the parent who takes on the responsibility of caring for the kids can often feel isolated and probably stir crazy!

The stress on the strongest of relationships and family units will become head splitting at times and unless you’ve an extraordinary support network nights out and long meals with adult conversation will seem like distant memories; even family days out are tough usually requiring military precision!

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Most days I work late and am either greeted by a happy little boy clutching a Smyth’s catalogue and his trainers or a rat bag tired and screaming but usually still wanting to go out in the car; back to experience tells me take him out to the park, shops, beach wherever it stops the melt down and the fresh air usually guarantees no 2 am wake up with lights on trampolining on your head. 6 hours exhausted sleep is better than an hour here and there and the time spent what ever we do even after a hard day is priceless even precious and it de-stresses me from the work environment.

There is no manual to parent a child let alone an autistic child but the same principles apply the more you put in the more you get back; your child may prefer their own company but don’t let that stop you get on the floor and interact, get on the zip wire, slide or swing (even the bloody North Sea as happens here) to share experiences.

A happy child will interact more positively in my opinion and when you learn what makes them happy it’s great to use as a distraction to nip a potential meltdown in the bud.

So summarising be civil,firm,tired,skint, stressed, thoughtful of your partners situation but most of all try to smile and interact with your child.

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Cramlingtons got talent 

Today was a strange one. This morning was normal Reilly emptied a full huge bottle of Bold 2 in 1 into the washer, emptied a tub of gravy granules and a packet of oats over Miss Rabbit, put my shoes in the paddling pool then proceeded to have THE biggest meltdown I’ve ever seen.  This one involved screaming at the top of his voice and trying to get his foot stuck in the letterbox.  The neighbours must honestly think we are crackers.  This was the type of episode where it does not matter what I do or say it’s got to run its course so all I can do is make sure he’s safe.

 

After approx 45 minutes calm was restored and I needed to get out the house. I ventured out to the softplay at Concordia in Cramlington, Shane was already there at the bowling alley with Ellis and his friend.  The lady on reception was an absolute diamond.  She gave me tons of info on  how and what was available to Reilly via Active Northumberland.  Unfortunately Reilly wasn’t interested in softplay one bit and saw the clip and climb as a much better focus for his attention, trying to get a foot on to scale the massive walls with no fear what so ever.  The staff in there again were fantastic and also gave me details of autism activities such as trampolining etc.  I love it when staff are understanding and make us feel welcome it makes such a difference.

I had no idea what Reilly would think of the bowling alley it’s quite dark and noisy but again he loved it, had to be retrieved from half way down the lanes and attempted to get his legs in the bowling ball dispenser but other than that he was happy. Result.

We nipped across to McDonalds with the boys but the play area was closing.  I had a quick chat with a lovely girl called Rachel and explained Reilly had been in with school 2 weeks previous and that he would expect to go in again because well that’s just what he does. Rachel allowed us in on our own and pulled down the shutters half way.  This equalled 1 happy Reilly which equals 2 less stressed parents.  We chatted to Rachel and Manager Michael while eating and they were incredibly inquisitive as to how they could be more helpful to families with autism. What a difference a bit of understanding makes to our little families.

      What a stark contrast to the bad experience we had when I first started this blog.  I feel like autism acceptance is growing.

Well done Cramlington keep it up. ⭐️

Tim Lamb Centre – We fit in! 


This morning we decided we would go and visit the Tim Lamb Centre at the Rising Sun Country Park in Benton, Newcastle.  Reilly has been there many times with school and always seems to enjoy it so on a rare Saturday off for Shane we decided to check it out.  As always we showed Reilly photographs of the centre and he happily got into the car, this usually only happens on being shown photos of Toys R Us, Smyth’s or kinder eggs.  Result.

Only around 10 minutes by car from my house The Tim Lamb Centre was like a little hidden gem that I should have found way earlier.  We were shown around by a lovely young lady and I was really impressed by the facilities.

  1. Baby & toddler room packed with toys, play kitchens etc
  2. Art & crafts room
  3. Teen room with gaming consoles etc
  4. Trampoline room with 3 trampolines and enough Lego to build another centre
  5. Music room
  6. Sensory room fully equipped with sensory lights, wires etc
  7. IT Suite
  8. Soft play area
  9. Cafe
  10. Special toilets & changing bed
  11. Enormous outdoor play area – swings, slides, ride ons, climbing frames
  12. Chickens, guinea pigs, goats & rabbits!

But best of all was what there wasn’t.  No judgey glares – the pressure was off.  I am always in fear of the next meltdown and where it will be but not here.  Everyone gets it.

The centre is for children with additional needs and their siblings. We signed up for a year immediately  (£15 plus £2 per session).  This also enables you to apply for a stay (for a fee) at one of their lovely caravans at Haggerston Castle or Appleby too.

 
I need somewhere like this where I can actually relax with Reilly, no tuts, no parenting advice from old codgers on how a smack would sort him out and a cup of tea in peace while he plays where he feels comfortable and is accepted. Priceless.


Pathways 4 all are a charity and a great one at that I know we will be returning frequently.

I also must say the name Tim Lamb was really familiar to me and it came to me that this was the gentleman that was spoken of very highly when we started the charity North East Hearts with Goals I believe he was a keen advocate of the placement of defibrillators as Metrocentre Manager.  So a shared passion of making lives easier for those with different abilities and for saving lives. A great combination I’m sure we all agree.  Strange how things link up.

Check it out, you might see me – I’ll be the one yawning and frazzled trying to stop Reilly having a wobbler ……. oh hang on that’s right that’s  not just me anymore 😄.

A great day apart from he didn’t want to come home and attempted an escape from his car seat for the entire journey complete with screaming of banshee proportions.  I’m pretty certain passing drivers would have noted the reg.  Most of the night spent sat in the car which is his new favourite place.

Today’s nickname Luke Cloud Walker.

 

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.