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.

 

 

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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.


Flying solo

I’m back from my few days away with the girls!  I had the best time I can’t even put it in to words.  I felt safe and relaxed those two concoctions don’t come around very often.

When I received Reilly’s autism diagnosis I thought these times were over.  As an established anxiety sufferer and now the added worries for Reilly I never thought I would have the courage to fly solo.   I lost my Grandad on the morning I flew.  He has been ill for a long time and pleaded regularly  to help him on his way.  A horrific time for my Mam and her brothers.  I felt I should stay and support my Mam who was having absolutely none of it.

I arrived at the airport with the girls armed with diazepam, just in case.  I didn’t take one and I was just fine.  I have laughed more in three days than I have in three years.  The only time I wavered was when Shane posted photographs to social media of Reilly.  I felt a pang of guilt that I should be there, I wanted to have my nose buried in his hair but a serious word with myself and reminding myself of the fact that he is going to be there doing exactly the same things when I get home and all was right again.  I have a husband and friends who do not have that chance – a reality check is all that is needed about how lucky I am.

The time I spent lounging on the sun lounger soaking up the sun is as beneficial as any medication I’ve ever taken.  It’s essential in fact.

I was ‘evicted’ from the villa on Wednesday and sat pondering in the airport waiting to board the flight.  Could I have stayed the extra couple of days with the girls?  Damn right I could have.  Reilly was absolutely fine with his Dad.  He seems to just switch modes when the other is not around.  I often wonder what his concept of time is, I still don’t have the answer but what I do know is our reunion was not the teary, Reilly running opened armed to his Mam who scoops him up for a cuddle.  I surprised him by shouting through the trees in the park,  he stopped for a second and did a quick glance, I jumped out and he changed direction and went up the nearest climbing frame.  I was absolutely gutted ha.

Next year the full duration with the girls abroad?  You bet it will be.  Let’s have some of the old Christine back, loosen those control reins a little and realise the world still turns without me.

RIP Grandad Billy

RIP Aunty Jane who absolutely loved this blog and Reilly’s adventures

xx

 

 

A gut feeling

Like most parents of autistic children I read, a lot. I read other parents blogs, scientific studies, general books on autism, self help books, how to use the toilet books, special needs rights books, communication books. A lot of books.

There is one thing that I keep seeing – in forums, studies, blogs, even a TedTalk and that’s about how prolific the link between the gut and the brain is. I decided I would delve deeper after I watched the documentary The Truth about Sleep, in which there was a lot of talk about pre and pro biotics.  If you don’t know probiotics are good bacteria that lives in our gut, prebiotics is a fibre that we can’t digest but allows our probiotics to flourish and fight the bad ones.  If you do take time to read more on the subject you will see the gut/brain/autism study where the mice became more social, less anxious and displayed ‘less autistic behaviours’.  There are parents actually doing fecal transplants to change gut microbes in, I shit you not, crapsules.  I’ll leave that there, it makes me feel a bit sick. 

In the documentary it talked about people who get less than 5 hours sleep per night, that’s me and has been for as long as I can remember and they’ve found not getting enough sleep can cause changes to our gut bacteria.  We have trillions of micro organisms living inside our intestines that keep our bodies running along. When it’s thrown out of kilter there is mounting evidence that it links to IBS, allergies, obesity, diabetes, heart conditions, brain function and neurodegenerative diseases. It will also make you crave sugar PMT style.

A recent study showed that getting less sleep changes the levels of specific strains of bacteria. The amount of certain types of bacteria decreased by almost 50 percent ― and that was after only two nights of not enough shut eye.

I’m no science teacher so I’ll try getting to the point.  

My beady, black tired eyes lit up like fireworks when I read that pre and probiotics can be beneficial when targeting anxiety, depression and OCD.  My threesome. So off to Holland and Barrett I went today like a medical encyclopaedia looking for a new chapter. 

I am the guinea pig. I took my first capsule tonight and will monitor daily if it makes a difference. I will be honest you can be assured. Could this help sort out the restless, anxious, biscuit craving, foggy brained obsessive fatty that I’ve become?

 Maybe not but let’s give it a shot if it helps with my anxiety, sleep, sugar cravings, stomach pains and allergies it may become a permanent fixture in this house.   I’ll report back on this in a week 😀🤞🏼.  I’m off to sleep. 

Ps not on commission, not selling anything.