Sleep Deprivation and Tossers

I had a driving lesson this morning.  I haven’t had one for a couple of weeks and feared the worst for the general public.   Today though I was more switched on than usual, I wasn’t as panicky and all round had a much better lesson.  How can this be?  I’m consistantly nervous and Driving Miss Daisy but today was better and there was only one explanation.  I’d had a full nights sleep.  I fell asleep with Reilly at 20.45 woke up at 23.45 thinking that was my lot and that it was 6am.  Imagine my excitement when  I realised, Reilly allowing, I could actually rack up an incredible extra 7 hours!! That’s exactly what I did.

Sleep deprivation is the worst.  Physically I can take being tired but mentally is a different story.  What a horrible, moaning, ratty cow I become when I get less than my (sometimes if I’m lucky) 5 hours.  Some days I look at my social media and switch it back off because I literally hate everyone, I put TV on and switch that off because I hate everyone.  I lose approximately 70% of my vocabulary and recently actually questioned how I had spelt the word ‘the’ because it just didn’t look right.  It’s depressing, literally. It aggravates anxiety and whips up a vile vicious circle of over thinking, insomnia and exhaustion.

I read some jolly old snippets about sleep deprivation today that filled me with horror, I’ll share a few for you:

  • Five hours or less sleep nearly doubled the risk of death in particular cardiovascular disease in one study. Like I needed to read that one given our family history.
  • Chronic sleep loss puts you at risk of heart disease, heart attack, heart failure, irregular heartbeat, high blood pressure, stroke and diabetes.  Whopppeeee NOT!
  • Makes you look like Gollum (FACT).

The fact that my post entitled Grim about dying and leaving Reilly is one of my biggest fears this doesn’t help.

I get to have all this and do North East Hearts with Goals, Alphabetically Autistic and keep the house ticking over (kind of) which makes me tired just writing it.

It changes me as a person, my whole character.  I have recently while out shopping in sleep deprived state actually wanted to hit a woman with a 4 pack of beans for looking (for more than 5 seconds) at Reilly kicking off and straddling the big bit of the trolley like a school gym horse.  I settled for bumping her with said trolley.


It’s just no good. I’m not an angry person.  I’m laid back, I hate confrontation, I like peace.  I want to throw all of that out of the window and go on the rampage in my sleep deprived states.  At any given moment someone could be one judgey tut from a decking.

You can help me though by supporting our bid to make a film with ACT2CAM to educate the general public.  Not just any film though, a clever, witty film with input from autistic people.  We have the idea, we have the facilities good to go, we need your vote to be awarded the funds to make it happen.  Just 2 minutes of your time.  Help them stop me from wanting to pummel tins, chickens, eggs off them, help me to stop telling people to fuck off for their blatant ignorance to the situation in front of them.  Help them to be less judgemental.

We can do this.

Vote here – Aviva Community Fund Campaign .

Please don’t leave the blog without voting.  We can’t do this without you.


#prayforIan (driving instructor)


Theatre of Education

There is a status currently doing the rounds on Facebook about teaching your children to be more understanding of those who are different.  This is the post:

I would just like to put this out there! If your kids are not around special needs kids at school and have never been taught that not everyone is the same then maybe you could take 10 min tonight to explain this to them because even though they may not be around these kids at school they will encounter them in their lives, as it should be.

In the light of recent events on the exclusion of a child who has autism from participating in a school trip and a child with Downs Syndrome being kicked out of dance class because she couldn’t keep up, I feel the need to share this. There are boys and girls that nobody invites to birthday parties. There are special kids who want to belong to a team but don’t get selected because it is more important to win than include these children. Children with special needs are not rare or strange, they only want what everyone else wants: to be accepted !!
For all the wonderful children out there.
Can I ask a question? Is there anyone willing to copy and paste this post to their wall without sharing it, like I did for those special children out there

Now I’m not one for copying and pasting statuses usually but this just encapsulates everything that we are trying to achieve with the Theatre of Education via Alphabetically Autistic. So go that one step further help us make it happen.  I see numerous times everyday how heartbroken people are at videos and stories of children with special needs being bullied.  Imagine being the parent of one of those children, we know the stats are way higher for it happening to our children and it makes me incredibly sad and fiercely protective.

Education as with everything in life is the key.

Putting Really Reilly on in schools or in theatre’s for public showing will really help children understand.  I cannot stand to see these children being mocked and believe me I have witnessed it on too many occasions.

Please help get Really Reilly to your child’s school and help us promote inclusion and acceptance for these kids, they deserve it.  Email for more information and booking.

Use your voice to make us heard.  Share this brilliant initiative.


Parents evening

Tonight we went to Benton Dene School for Reilly’s first parent’s evening.  I absolutely love Reilly’s school and his teachers.  It’s so important to trust them. When you have a non verbal child you must be 1000% confident he’s happy and I’m absolutely certain he is.

It’s intriguing to hear what their thoughts are on Reilly.  How on day one he pushed a chair to the bench, got on it, opened the cupboard and helped himself to some cereal and a bowl, made it and sat down at the desk to eat it.  Just proves he not just fiercely independent at home but he is at school too.

He’s communicating with his PECS cards really well and I got to see a video of him sitting in their small dining room where approximately 10 have their lunch together.  Not once did he require help and tucked into his dinner no problems, nor flipping anyones plate which I was surprised to see.

All in all we are all really hopeful that Reilly will talk.  Academically he’s bang on and learning is not a problem.  We spoke to his speech  therapist and occupational therapist who are just getting to know Reilly and all his unique ways and we’ll work together with them on communication.

I left with a little bit of a spring in my step feeling the future is bright for the little man.  I need to bottle this feeling and have a swig everytime I feel a bit grim🙂

Here’s a video of Reilly on holiday for no other reason that he’s just plain adorable, just doing his own thing xx

Reilly says no

We are having a right carry on trying to get Reilly in the bath at the moment.  It stems from a hairwashing disaster a couple of weeks ago, it was a two man job and i’m not sure he has forgiven us yet.  He literally hyperventilates when the bathroom door is open.  He hates his hair being touched.  Even when he is asleep he will wake if I move his fringe or tuck it behind his ear.

I videoed him last night as he does this every time the bath is mentioned.  He’s a little scruff.

Top marks for communications skills though I think you will agree.


Child free and Reill-e

What an amazing week!

Not only did we smash the target for Reilly’s support dog but I have been out minus children and husband twice this week!  Feel like I’ve won the lottery!  I love not being responsible for anyone even if it is just for a few hours.  No watching doors, windows, kettles, bins, gates, fridges, sinks… you get the picture.

I have noticed a considerable shift in my anxiety this week.  Karma coming back around and that teeny chink of light at the end of the tunnel turned into a steady beam when we reached the target for Reilly’s dog.  Big thanks to everyone for that.

Thursday I attended a charity awards ceremony  with NE Hearts with Goals where our little fundraiser Bobbi made the final 3 for young champion of the year, didn’t win but doesn’t matter finalist is an achievement in itself and last night I attended my cousin Dan’s wedding at the Baltic Art Centre in Newcastle which is just beautiful and one of my fave landmarks.  I saw family members I haven’t seen in months and loved filling them all in on how the support dog would help us as a family and said the sentence “ah its not that bad, well actually it is” many times to those talking about my lack of sleep and endless running.

When i’m out people often say Where’s Reilly?  Will he be alright? to which I usually answer in the shed, he’s with his Dad the other one with equal responsibility.

Both nights i’ve got home after one and prayed to Jon Snow (I’m not a religious type) while putting the keys in the door that he was a) asleep and b) wouldn’t wake up.  Last night was like a scene from Home Alone.  Lego, cars and toys trailing from one end of the house to the other, my eyeshadow crushed into the floor and then subsequently the same khaki gold coloured powder handprinted all over my downstairs bathroom, sink and 2 matching footprints on the toilet seat.  I’m not bothered.  Small price to pay for a few hours breather and when I looked into the bedroom I could see a sea of underpants attached to a snoring Shane, Reilly and Ellis. Happy.

So today has been Shane’s respite.  He’s out for a couple of pints with his best buds and i’m chasing my tail trying to to keep some sort of order.  Reilly has found a new movie which I’d never seen before which is Wall-e  he seems to be naturally drawn to non/limited verbal characters.  After watching Wall-e he went on a bit of a rampage of making a mess then trying and failing through lack of interest to tidy it up.  I think he’s missing the whole point to be honest but he doesn’t appear bothered.  I made the mistake of using his bribery bath foam (he wont go in at the moment) below top of the wardrobe height too. I’ve attached a little video of how that one turned out.  Poor Olaf.

NEVER go for a wee and think you have time to check your messages while having a little escape.

I’ve recently given up while he’s still awake and i’m just going to patiently wait for Poldark with my cup of tea in a cardboard cup, I now ask guests if they’d like a lid with their coffee, what service and it saves on the breakages.

Uniforms are ready the rest can whistle.

Nearly Monday🙂