Reillys Party

Last night I couldn’t sleep.  Terrified that no-one would turn up for Reilly’s party.  When I opened the blinds to see the snow bleaching down outside I felt even worse!

I packed up my little mini with raffle and tombola prizes and set off at 2 miles an hour to pick up the party squad and get set up.

I needn’t have worried. At 1 o clock the doors opened and people flooded in.  The room was packed!  Reilly was brilliant for a good hour after that he clung to me and typed McDonalds into my phone constantly 🙂 we spent a bit of time outside and that’s ok. We also spent a little bit of time in the foyer reading a George Pig book.  When you need 5  minutes you need 5 minutes.

The children partied TOGETHER  it was so lovely to see.  It was amazing to hear some of the parents had used examples from my blog to explain about stimming etc to their children before they came.  This is what it’s all about!! Education and acceptance.

Special mentions today go to those people who gave up their own time to come and entertain the children.  These people are priceless coming along at such a busy time to help the local community.

Rite Rhythm Disco  contacted me and said if we ever needed someone for a disco he would love to help us out. He has an autistic son also and gets it.   He did today and did an amazing job.

Party Animals came along to show and tell the children about animals. Snakes, frogs, guinea pigs, dragons. The kids absolutely loved it!!

 

Martin the Magician was a huge hit! Hilarious and kept the kids entertained perfectly. Thoroughly recommended.

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Sandra McGrath from Cramlington Village Club didn’t hesitate when I asked if they could help us out with the venue.  They also donated prizes for our raffle.

Hannah Wilkinson our beautiful Elsa who I only met a few weeks ago came today after I heard her singing at our annual charity ball.  She did an incredible job and the kids were mesmerised by her

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Maisey Maxwell our little helper who set up her own stall to do glitter tattoos for the children (and adults I noticed).  Awesome!

And not to forget our raffle ticket, tombola selling, room decorating squad!

With tickets purchased online and the party today Reilly’s party raised just short of £500!

BUT …

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Marce Gaygaskel who plays Granny Mary in the play The Life of Reilly superbly wrote a cheque for £1000 today.  She believes in this project as much as we do.  Absolutely blown away by her generosity.  Cannot thank Marce enough.

Our crowdfunding when all paid in will stand at just over 4k.  We can do this!

We have 12 days then we can fund this pilot and start shooting in February. Crowdfunder Life of Reilly

He’s fast asleep now but has kept looking through the photos and videos.  He absolutely loved the DJ equipment and did a bit scratching 🙂

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The Flood

Ah don’t you just love the school holidays?  Actually no, no I don’t.  Holidays were hard before but now we have Tarly who just wants to eat your feet 24/7 so we have had to resort to drastic measures Reilly wears wellies in the house and I wear massive elf slippers from last christmas (not the greatest when the ice cream man rolls up playing his snooker themed chime and you’ve got a printed jumpsuit, no bra, elf slippers and a colour on your hair).  He still got his ice cream!   If you snooze you lose and he’ll take your toes off.  Its like a constant game of the floor is lava trying to get from living room to kitchen.  Reilly has even took to sitting in Tarly’s crate with the door shut, if I get reported to social services please be assured this is Reilly’s choice not mine 🙂

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When Reilly isn’t squealing to escape his little needley gob he pretty much loves him and really belly laughs at a lot of his antics which is just fab!  I distinctly heard Reilly attempt to say ‘down’ yesterday but didn’t capture it on video.  He hears it A LOT to be fair.

I’m doubly vigilant as i’m not only watching for escaping Reilly’s but also escaping Tarlys too i’m checking doors like someone with OCD – I can say that I have it!

This morning when I was putting the mountainous piles of washing away (unironed) I was happy in the knowledge that the front door was absolutely locked and the keys out of reach.  The back door was open to allow Tarly to run in and out if he wants to and for Reilly to play on his swing.  Gate is padlocked so happy days.

What I didn’t bargain for was the fact that Reilly had switched the hose pipe on and had brought it through the kitchen into the garage which was filling up like a canny little paddling pool.  Luckily there are 5 suitcases full of crap, 2 christmas trees, 2 bikes, 3 guitars, a wardrobe, 2 fireplaces, numerous bits of thomas track in boxes, some coving and 10 bags of clothes recycling bags to absorb some of the flow.  Was like something from the day after tomorrow.

Every towel in my house was used, big sloppy cold messes that dribbled everywhere en-route to the washer.  Yak!

Anyway we rounded off the day with a trip to Round the Twist and Asda so that equals a happy Reilly.  He even stopped going up the slide instead of down it after I told him the slide police were watching.

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He’s currently melting down because I used his penguin christmas plastic plate and he’s trying to bite it in half.  Neighbours if you are listening calm will be restored very soon.

Happy Days – Roll on Monday xx

Tarly went to the vets last week.  The peeps at Pets at Home Cramlington were fab and a little bit smitten with the boy xx

The Life of Reilly and Tarly

Tarly is settling in brilliantly! We all absolutely adore him. Reilly is already starting to be more vocal around Tarly, attempting to say his name and usually shouting no when he’s hanging off his pyjama bottoms.

Things I have discovered since Tarly came to stay:

  1. Puppies wee a lot.
  2. I don’t like the smell of dogs poo.
  3. I feel like a pin cushion off his little needley teeth.
  4. Dog stuff is expensive.
  5. I ❤️ shopping for dog stuff anyway.
  6. I ❤️ the way he welcomes you even though you’ve just left the room for 5 minutes.
  7. I ❤️ how excited he gets the second we wake up.
  8. I ❤️ smelling the top of his head.
  9. I ❤️ the way Reilly interacts with him.
  10. I ❤️ that he sleeps at the bottom of Reilly’s feet.
  11. I ❤️ watching him try and jump up the first stair.
  12. I ❤️ that I can practically feel stress fleeing my body when I stroke him.
  13. I ❤️ to watch him playing with Ellis.
  14. I ❤️ this little lad as part of our family.

I have a really good feeling about Reilly & Tarly and cannot wait to see how it unfolds. I’ve started doing some training this week with Tarly so I can add that to my cv as well as nurse, negotiator, cleaner, teacher, house wifey, researcher, diplomat, advocate etc.

I’ll try keep you updated with their progress as often as possible. My new fave pastime is watching these two instead of the telly,

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?

Helpful holidays

Today’s musings. I’m so nosey when I’m on holiday. I’m always watching other families and how they interact, I’ve also spoken to quite a few other parents of autistic kids. We all have the same struggles. Why not just get a villa? I have a ten year old who loves making friends, getting ready for the ‘night time’, playing footy. And I’m a people person. I like talking to complete strangers and walk away content that I know where they are from and what they’ve had for their tea. I also want Reilly to be around others, it’s life. People won’t disappear as he gets older there’ll be more need for interaction. And most importantly I am not cooking on holiday. There are many millionaires in this world, billionaires in fact. I would really like it if one of them or even a double dragon would create a disability friendly resort.

Not just autism, any disability. Accessible toilets, parks, water parks. Rooms designed with people of a disability or different ability in mind. Here’s what would work for me if anyone would like to give Peter Jones and Deborah Meaden a nudge.

1 month prior to departing hotel to send pictures of the resort, not the ones an estate agent would use, the nitty gritty. How big the dining room is, what the air conditioner looks like, what type of toilet flush and shower head. What the beds looks like. You get the idea.

On arrival at said airport. Resort needs to be near airport no more than 30 mins drive. Accessible bus. No collapsing buggies or not being able to board with a wheelchair.

The rooms should have balconies that tall you couldn’t climb over but can still see out. They should have a means to lock the door or gate it from the inside. Everyone fears the child waking in the night and doing a runner. Rooms should be soundproofed too. Bathrooms again fully accessible. TVs should always have Disney kids channels available 24/7. Autism doesn’t sleep, neither do we. Hearing loops, signed welcome meetings, Braille hotel guides. You get the picture.

Specialised medical equipment that is bulky and essential should be available for hire without a charge and sterilising facilities available. Nappy store in every size and variety.

Dining room should be loaded with Nutella and sliced bread 24/7 😂 this is possibly one of the most important factors for us. Times should not be strict around dining. There should always be chips, chicken nuggets and drinks available at ALL times. Plastic plates to stop the clattering. Food could be packed into takeaway cartons and taken to the rooms. PECS visuals.

Entertainment should not be as loud and god forbid I even say it but children should be able to dance on the stage!! A playroom available at all times again 24/7 not just 1-3 and 5-7 for the kids who don’t like gangnam style.

DVD players in all rooms and a selection on DVDs available from reception.

The hotel should have direct access to the beach with walkways provided for wheelchairs, buggies etc. All parents should have walker talkies to summon bar service so you don’t have to disrupt said child.

I could go on. Maybe a petting zoo and a couple of accessible rides. Staff trained in special and medical needs would help enormously.

I’m waiting …….. until I win the lottery we’re relying on you Peter Jones. If you build it they will come 😬

Hola again!

Back in Majorca one of my favourite places. I was dreading the journey, I’ve been anxious about it for weeks! I found the downloads from the Newcastle Airport website really useful this year as Reilly knew each step. I downloaded the autism passport from Newcastle Airport website in preparation. I was disappointed with it last year, not sure if it was jut a blip because this year it was brilliant. It doesn’t allow you to check in first which would be a major bonus for us but luckily there was no queue. The girl on the Jet2 desk rang and arranged for someone to meet us at the gate before everyone else was called. We chose to board first which was brilliant none of the pushing and shoving of people terrified that they aren’t going to get their hand luggage stowed away before we take off 😂.

The plane only had 50 people on it so we ended up with a row each. Reilly never really removed his cheek from mine so not the most comfortable but his behaviour was just brilliant.

The transfer in Majorca took for ever. We were last off and in future I’ll be getting a taxi, Reilly wanted off at every stop understandably and got quite upset when we stayed put. We arrived at the resort past meal time and were given a picnic. It was nice but Reilly simply wasn’t eating a ham and cheese sandwich he regarded it with the same enthusiasm as he would a shit sandwich. We located our room at 10 o clock through what I can only describe as similar to the gathering from Battle of the Bastards,Game of Thrones. There were kids EVERYWHERE some big, some small, all running, some with weapons and all screeching. My immediate thought was WTF have I done. The second we entered our room Reilly put his pyjamas on and Shane went on adventure and returned with a pizza and 2 chicken wraps 30 mins later. Things were looking up. I unravelled Reilly’s melatonin from the 4ft of bubble wrap (extra security) I had wrapped it in to ensure are arrival and he was asleep within 30 minutes and taped that way until 8am 😀.

Breakfast was horrific. Reilly walked in to the extremely busy dining room and turned on his heel back out. Only one place Reilly wanted to be and that was the pool, thats where he stayed for the rest of the day. Me and Shane split shifts to get time with Ellis and 10 minutes on a lounger. He even managed to dodge the 6pm winning pool closure guards and jumped back in at 7.20! He’s ate chips and bread,typical beige. The hoodlums from last night turn out to be really nice kids and families I’m pleased to say.

I’ve only had one run in with a Dutch gentleman. Reilly while running away from me stopped to throw a doll in the pool. He wasn’t happy and came to tell Reilly off. Asking which language he spoke. Now this is a tricky one. I said he understands English. The bloke got hold of Reilly’s arm and demanded an explanation as to why he threw the doll in the pool. I was torn between riding it out waiting for Reilly to answer or pushing him in the pool. I chose to swat his hand off and tell him Reilly can’t talk and gives no shits about what goes in the pool. If it’s on the ledge it’s going in, he understood exactly what I was saying and I apologised that the doll got wet and he shuffled off.

Tonight Reilly has made a new friend in the old Spanish lady on the onsite shop, everyone is terrified of her but I caught her watching Reilly organising the planes etc so I flashed her his card I made which say he’s non verbal autistic in Spanish. Ah she loves him. She said Bye Weilly (yes a W not an R) and he gave her a kiss! WTF? Dinner was chips and bread again.

We are now in the room while Reilly enjoys the kids disco but from our balcony instead where he can hear and see the flashing lights, it’s all a bit too busy for the lad.

Groundhog Day tomorrow I’m sure. Ellis has made friends to play football with and saw Fraser Foster (England Keeper) in the airport so he’s happy, they even played a teeny bit together today!

Gremlin at the Vue 

Myself and Kelly had an excellent breakfast meeting this morning so I was quite chilled when I got home. Nothing better than a cup of tea without the fears of Reilly the Greek smashing your tableware, a sausage a bonus.

Shane is off today only job was to go order some flowers at Cramlington. Easy. Then we can do something with the kids. 

We got out the car at Manor Walks and Reilly ran like a whippet into the Vue cinema. I chased him Shane and Ellis went about their lad stuff.  He’s NEVER been in here before, imagine his absolute joy when this big mystery building not only had giant hotdogs, chocolate and pop on tap it also had trailers running for his fave films. 

I managed to keep him in a seat in the foyer  while he ate his giant hotdog and a full packet of milky stars but in a blink he was over the seat and into the first auditorium luckily I caught him by the hood before he got in front of the screen.  I tried to leave but all of a sudden his legs stop working and he’s starfished and squealing. I’m not stressed, I’ve seen WAYYYY worse. I pick him up plonk him in the seat and Shane and Ellis appear.   Ellis mortified by Reillys behaviour. 

The lovely girl who checks your tickets tells me about the autism friendly showing on the last Sunday of every month and would we like to let him have a look in an empty auditorium ooo how lovely and helpful yes we would love that.  Big mistake. He wouldn’t come out and Despicable Me was starting in 15 mins.   Shane offers to go buy 2 tickets and suggests I might want to try him. I know in my nervous pit of my stomach it’s a disaster but what the hell cant be that bad, right? 

Yes it bloody can! We move seats 14 times before the adverts come on.  It’s filling up and there are less seats available. All these kids excited with their gallons of pop and warm popcorn while Reilly tries to gallop along past their knees, down the stairs, star jumps in front of the screen, up the stairs, hands and knees along row G laughing the whole time. I get him back in his seat and whisper if you don’t stay in your seat we have to go home and you won’t see Gru or the minions, he doesn’t give a shit.

He’s off this time standing on the arm of an occupied seat in the back row in attempts to see where the beam of light is coming from.  I apologise for the 20th time, get him down and he’s off.  No star jumps this time just straight out of screen 6.  I get to the doors and see nothing. I run into screen 7 to the end credits of Cars 3 and no Reilly.  Head in the toilets, no. I run to the front doors incase he has actually left. No one has seen him.  Now I know he’s in one of the screens it was like deal or no deal on the numbers. I’ll have number 4 because that’s my birthday and might be lucky. Nope. I start to feel panicky at this point, the adrenaline is kicking in and my limbs are tingling. I have images of the gremlins in the projector room with film wrapped around the poor attendant.  Just as I’m about to report him missing he pops out of screen 3 without a care in the world, in fact with a swagger about him like he’s only 6 but got in to see a age 10.

Needless to say we leave. I predict that Shane and Ellis are in Nando’s. It’s Ellis’s most favourite place in the world. I walk in with Reilly and see the look of sheer terror on Ellis’s face. Pleading with me with his eyes to turn around and go somewhere else before the shenanigans starts. Free flow Fanta with no glass underneath, peri peri sauce down the sink you wash your hands in. You know the score. So I leave them and go to his fave cheap shop where he can spend ages looking at stuff I would rather not buy. We left after 30 minutes with Reilly the proud owner of a minions dressy up. How could I not, he has never shown any interest in dressing up and this makes me happy. Seeing Reilly happy makes me happy and if it means he walks around looking like Stuart for the next few weeks well so be it.


We’ve had a lovely afternoon me and my minion, drawing, jigsawing and cuddling. This mornings disaster a distant memory. The Vue refunded our tickets so who’s up for Paw Patrol last Sunday of this month? I’ll buy you a hotdog.


1st meltdown of the year!

Let’s go to the park and the beach he says (Shane).  It’ll be fine it’s not that cold, Ellis can ride his segway on the promenade we’ll get some chips.  Anyone who knows me knows i’m not outdoorsy.  A walk around Plessey Woods is more of a punishment to me than an jolly outing, I decided though you know new year new me let’s do it.

Wrong decision.

We just arrived at Blyth Park when the heavens opened.  That means nothing to my children though who seem to have no thermostat and will happily play outside in sub zero temperatures wearing shorts.  Reilly was unimpressed with the fact that everything was wet and did say urgh at every swing and slide we got to.

We ventured further along to Blyth Beach to get some chips only it was shut and was just as freezing.  Ellis’s segway travelled approximately 12 metres before conking out and had to be carried back to the car, equivalent of carrying a baby elephant.  Did manage some nice photographs though so the hell was worth it.  I’ll probably attempt in again maybe in July.

Onwards home and the kids want a McDonalds, that’s ok we can do that, not me (new year new me = NO Mcdonalds).  I was unaware of the thing that Reilly does when he is with Shane.  Basically you cannot touch his food or happy meal box, not at all.  He opens the box and then arranges the fodder on napkins.  What did I do?  Christ on a bike he screamed the place down.  Ellis was crying mortified by his  behaviour while I stare at the box I just opened which has now become extremely offensive to Reilly and I was actually scared to move it, pick it up or even look at it for fears of making the situation worse.

Eventually Shane went to the counter and bought another happy meal which Reilly opened and arranged like he wanted to with the first one and all calm was restored.  So strange.  Reilly doesn’t do this when he is with me but I suppose that is a classic example of flexibility of thought which is one of the main diagnostic criteria.  He does it that way with Shane and it can’t be done any other.

Home now but not Shane.  Reilly wouldn’t come in so he’s off walking the streets with him.  Poor Bugger.  Roll on Tuesday folks get them back to school.

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Love needs no words just paws

How rude!  I put up a go fund me account for an autism service dog and then disappear for 24 hours!  Myself and Reilly have been KO’d by a sickness bug.  He’s better now and back at school but it still has me so my apologies.  This will explain his horrific behaviour of the last few days he just couldn’t tell us, breaks my heart!

As the blog approaches 40k views I feel confident that we may have made a difference in how others perceive autism but now I really need your help.  I am overwhelmed by the response to the fund so far not even 48 hours in and we are halfway there, I have had donations from all over the world, donations from people I have never met and donations from my oldest friends and I am truly grateful.

Why do we want a service dog for Reilly?

Basically I am terrified for his safety.  He bolts constantly, he’s a slippery as an eel and nearly impossible to keep hold of.  When he does runaway I have to carry him back as he will not walk and he’s getting so much bigger and heavier I really struggle.  Reilly will often act impulsively and has literally no fear of traffic etc. A service dog will keep him grounded/safe.  The dogs are trained to sit like an anchor if Reilly tries to flee.

One boy and his dog blog post was an incredible experience to watch the interaction between Reilly and his protector for the afternoon if anyone needs a reminder.

A service dog becomes a true companion who is always there for Reilly. Their  bond will help with self-esteem and many social situations that are currently very stressful for Reilly and us as a family.  I often cop out of some situations because I just don’t have the strength to deal with them.  I don’t want that.

With a service dog I see light at the end of the tunnel.  Some days when things are really bad like my last blog I cracked, I cried!. I can’t see it.  I wallow in a kind of self pitying state of oh my life is too hard I can’t even go to the shop for a loaf of bread because it will take 2 hours and Ill probably have to carry him back and I’m too tired etc etc.  The thoughts of having a service dog has given me a little bit of hope (god knows we all need some of that) that maybe we can cope and function better as a family with a furry friend in tow.

After reading up and doing some research I decided to give Carol & Niel a call from Appaws for Autism a charity based in Scotland to really understand how the whole process works.  After some long phone calls with them I am certain this is the best thing  we can do for Reilly.  He needs this.  We need this.

This video I have attached is so much like myself and Reilly. I cried watching it you probably will too but you can get a greater understanding of the comfort a service dog can bring.

If we reach the target I will blog every step of the way in hopes of helping others who need service dogs too.

If you can donate please do if you can’t no problem please share 🙂

 GO FUND ME – AUTISM SERVICE DOG FOR REILLY