Just keep Swimming

1 more sleep. 1 more sleep if i’m lucky.

Last night Reilly went to bed and was asleep at 9.  He woke up at 12am like Aurora had just been kissed.  He was up until 6 this morning when he decided to have himself a little snooze thankfully.  Its rare these days thats its as bad as this.

I decided I was going to make sure he was tired tonight so decided I would brave the swimming pool. A quick wafting of his swimming trunks between Reilly and the Mac screen and Reilly was fastening himself into his car seat as quick as a flash.

I NEVER go to the swimming baths:

  • a) I am fat
  • b) I am a shade paler than Winterfell
  • c) I hate getting splashed.
  • d) Reilly having a meltdown and the thought of me legging it after him in a bathing costume turns my stomach (and the poor others who witness it).

Given my nearly 2 stone weight loss though I thought suck it up you are 45 years old and noone gives a flyer what you look like and off I went. Ellis decided he was coming too. Strength in numbers.

I drove off with my brood thinking I was great, one of them activity mams I despise normally, jealousy is a terrible thing. The mere sight of a fun filled family social media snap, usually fake can sometimes send my resting bitch face into a state of unrest.

Ellis splashed me at every given opportunity and I floated around like Red October looking for people I knew to get out before I would make my exit and head to the showers. Surfacing from the warmth of the baby pool on look out like a massive periscope.

I had another reason for going swimming. It was a secret covert mission to wash Reillys hair! I cannot do it at home. I cannot watch my boy ram his face into the tiles and scratch himself when attempting to wash his hair. Can’t do it. Is it the smell, taste, feeling, sensation? We don’t know but what we do know is it is much simpler at the pool. There’s a quick kick off but no meltdown and it passes quickly. Success! Look at me parenting!

All in all it was a huge success sounds ridiculous to some that I am celebrating a trip to the pool but honestly some of our trips out would make your toes curl.

Back home and out on his bike with Tarly for some night swinging at the park.

Surely he’ll sleep? He’s never stopped today. Tomorrow morning will be awful. First day back for Reilly is that bad his dad has taken the day off to help. It’s not that he hates school he just wants to be with me. This past 2 weeks you’ll be lucky if there’s been a day where Reilly hasn’t been attached to my cheek. He loves the holidays, loves staying in his pjs and watching films. He’s rekindled his love for Charlie and Lola which I’m very happy about and we’ve watched hundreds of episodes. Tomorrow is going to be tough for the little man. I expect uniform down the toilet at first opportunity.

Myself and Shane will be going out for lunch as we have spent zero time together over the Christmas holidays and a bit of almost grown up conversation is much needed.

Good Luck to all those with a fight on their hands in the morning. Cheers to the first uninterrupted cuppa x

Advertisements

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. 

Doctor Google

What a week i’ve had.  For those who don’t follow my  The Life of Reilly Facebook Page I passed my driving test!!  I cannot believe it!  

I have been incredibly anxious over the last week setting myself up for a fail, moaning to myself about how i’ll be trapped for the next 25 years in my house because I can’t drive and then went and passed first time.  I’ve been learning for about 2 years but because of my ridiculous chaotic lifestyle I have cancelled many lessons so I think we should say learning for 1 year it sounds better. My driving instructor has the patience of a saint and is also very funny which is exactly what you need when you are learning to drive age 45. Here is his details if you want a top class instructor in the Cramlington area My Drive North East.

21728323_10215018191111571_6612552167507044595_n

So speaking of anxiety some of you will know I run a little group, its secret by the way; which is ever expanding about anxiety and panic.  I’ve suffered for ever and its a great little support if you are having a wobble and someone to sound off.  It’s been a bad week for many so I thought I would cheer them up with a post about my anxiety and how it affects me and believe me it does affect me.  They all laughed at me which was the intention and said I should blog it as dealing with anxiety as the parent of a special needs child is a mammoth task.

Here’s the post with a little more of the drama:

  1. I have MS. Not negotiable.
  2. I have locked in syndrome (my biggest fear).
  3. I have a slipped disc.
  4. I’ve severed a nerve. Not pinched one. Severed it.
  5. How will I get on the plane?
  6. They’ll keep me in a Spanish hospital.
  7. Who will stay with me? I will have at least 500 panic attacks and my OCD will rage.
  8. Who the fuck is going to run after Reilly?
  9. Will I need a wheelchair?
  10. Where will I live if I have a wheelchair?
  11. Maybe it’s kidney disease.
  12. Will I need a transplant?
  13. Probably a tumor on my spine.
  14. Can I put my chin on my chest? Does it cries again as it kills.
  15. I’ve got meningitis have I got a rash?
  16. Will I be incontinent?
  17. Will I shit myself on the plane if I get on it?
  18. How the hell will Shane and the kids cope if I die?
  19. How will they tell Reilly?
  20. How will he understand?

I told you it was grim!  All the while I was googling different ailments trying to self diagnose what had happened.  Not at any point did I think I’d just hurt my back.

I eventually fell asleep thanks to my emergency cant get on the plane diazepam. Woke up at 9 couldn’t stand up, shuffled to bathroom and pittled myself again.

8 million tablets and a day later I got on the plane. I saw a doctor last week who is sending me for a scan. It’s still killing me. I have done EVERY self test on YouTube to find out if I’m terminal.  You’ll be pleased to know I haven’t found anything other than nerve damage or a disc problem that does indeed make you pee your pants.

It’s hard when you have horrendous health anxiety.  You try and get some balance and talk yourself out of ‘oh it’s something serious’ but then there’s that little nag that twitters in the back of your mind ‘leave it and you’ll make it worse’. It’s never ending.  I’m laughing to myself just typing this list but I can also guarantee I’ll be having further investigations, not with Dr Google.

 

No More Panic is a good site for anyone feeling angsty.

 

 

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.