A right tit. Literally.

I’ve not written a post in a little while.  The charity is crazy busy and the life of Reilly play, film, plans are matching it with hours consumed at the minute which is good, I think but my head has also been elsewhere. Distracted and anxious.
For the last few months I’ve had a niggle in my right boob.   I have literally felt a right tit numerous times a day over the last few weeks, something feeling just not right. Its probably nothing. But as a mama probably isn’t enough so off I went to my GP with Shane in tow to talk about it. We shall see what becomes of it, probably nothing but I can’t afford to pee about.  Apparently because I’m under 50 and don’t have a definite lump I don’t meet the criteria but I didn’t leave until I had a referral.
Reilly’s last few nights of no sleep has given me the chance to do what I do best.  Catastrophise. There is no better time than 4am to get those horrific thoughts flowing.  I’m not the first and i’ll not be the last woman with the 4am fears. Its the first time I have ever seriously questioned my mortality, sat and talked to Shane about will’s and arrangements etc. Not comfy conversations but so necessary.
As a parent you want to be immortal, as a parent to a non verbal autistic child I need immortality and then some.  I actually played through the scenario in my head and cried at the thought of my boy not knowing where I was. Would he understand? He relies so heavily on me alone its unbearable to think about.  So when a GP says its rare for something to happen l reply with so is losing your brother at 32 to a ‘rare’ heart condition. I take no chances.
I am merely trying to cover my bases, second base in this instance because its the only thing to do.  So off I went this morning to the breast clinic to get checked.  Appointment came through quickly thankfully. Consultant agreed there was a difference and sent me for a mammogram and ultrasound straight away.  Jesus they are tense times those waiting rooms.  I am very happy to say no cancer. Dense, thicker area but not cancer.  The relief is huge.
Check your bristols lasses, don’t just share hearts on Facebook or say you’re wearing red knickers in the Bahamas or whatever the latest thing is on Facebook and if it doesn’t feel right get cracking.  I know several ladies early forties who have had breast cancer in the last year or so and to them and all the others facing breast cancer daily I send my love xx
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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).

 

 

 

 

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

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.

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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 😬