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

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2018 lets have it!

I’m sat in bed writing this post after what has to have been the most boring New Year I have ever had. We don’t ever get out on NYE which doesn’t bother me one bit but we usually order food in. Watch the equivalent of Sydney Harbour fireworks kicking off from the neighbours out the window and at least acknowledge the year passing.

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NYE fun

This year the only thing I celebrating passing was the bug I had picked up from Reilly.  Bedroom bound for 2 days with frequent trips to the loo (remember I can’t go til Reilly goes first so it gets tricky).  I managed an hour downstairs with a dry bit of toast and League of Gentlemen then back into bed.  Today has been just as fun.  I’ve looked at approximately 150 holidays with Reilly who is now in holiday mode, watched Charlie and Lola ‘we can look after your dog’ 100 times and didn’t get to see 2 minutes of Dunkirk because Reilly has attached himself to me like a lovable barnacle to a rudder. Instead I retreat back upstairs and in the small amounts of time I’m permitted my phone I scroll through peoples look how amazing our NYE is posts and swear under my breath.

Seeing as I don’t like people that much it’s not the end of the world as i’ve made it sound and you’re actually welcome to NYE festivities I find it quite frankly overrated and shite and it has given me some time to reflect on 2017.  Thing that stands out the most is how much I have learned about autism.  Through researching but mostly by listening to autistic people.  Twitter is a fountain of knowledge that we as parents should be tapping into.  I will continue to do this. From the horses mouth cannot be wrong. You will be surprised and hopefully appalled at how huge the struggle is for their voices to be heard.  I want Reilly’s voice to be heard when he is ready and why shouldn’t it be?

2017 has brought lots of stress to our home.  Lack of childminders, money, anxiety, siblings, usual shit.  We continue to wade through it though. There’s always light at the end of the tunnel, might be in the distance but its there.  It also brought us Tarly Dog.  Worlds naughtiest pie stealing Puppy.

2017 brought The Life of Reilly play to the stage which was an incredible experience which will repeat on March 16th at Northern Stage.  Never in my wildest dreams did I ever think Id be minging around backstage at the Northern Stage with the thesps.  Loved it.  Never make an actor though.  I stood on the party scene cakes, had scripts stuck to marshmallows on my converse and marked all the beautifully polished floor.

The play
Scene from the play

That post.  That viral post.  Shane’s rant that went round the world and back again.  A very angry dad venting to his nearest and dearest that I copied to twitter.  Can only take the positives from it. Thousands of messages worldwide of support, I’ve broken my heart at lots of the emails with talk of suicide in children because of exclusion and bullying. Not good enough, not acceptable.  Fact is we all came from the wrinkly old bawbag lottery.  Respect each other and we’ll go a long way.

I’ve been trolled this year for the first time.  Vile cretins, it takes all my being not to respond or to read their comments but I’m trying.

2017 gave us a party! Reillys Party which was incredible.

The film pilot which is nearing its final week for crowdfunding has been a challenge. 5k in around a month is a big ask.  I decided to throw myself at it and see if we could do it.  The pilot will be used to hopefully get a full TV film off the ground.  I’ve seen Alison read through her lines with Crissy Rock for the 10 minute pilot and it is awesome.  With only 5 main characters in the scene and I’m sure most of you can envisage it.  Mam getting Reilly ready for school best she can, you all know how my mornings go! new taxi arrives, escort knocks on the door, mam never seen her before in her life, refuses to send Reilly with strangers, ends up in council offices for a showdown.  I’ve done it. Most of us have.

The actual film will see Reilly grow.  It will dispel some myths about autism.  It’ll look at the family dynamics and Reilly’s perception of it all.  It will see him grow into a young adult.  I don’t want to say too much.  It’s awesome.  Obvs not a real life story of my Reilly because he is 6.  This story is a collective of real life scenarios with guidance from autistic people.  Featuring autistic actors and crew is an absolute given.

If you want to donate before our time runs out you can at Life of Reilly Crowdfunder.  Every penny is appreciated.  Making a difference not just a donation.  People engage through drama we know that from the stage play.  We can hit a  much wider audience if we can take it to TV.  Let’s do it!! Only a week to raise around £700 to hit target.

2018 has potential to be amazing.  Reilly will continue to grow in handsomeness and awesomeness as per usual and hopefully the general publics understanding and acceptance of autism will too.

Big thankyou to everyone who has supported us this far with The Life of Reilly blog and by donating to the crowdfunder .  210k views isn’t bad going for a blog I imagined would get about 20.

One of the many things I adore about Reilly is his outburst of spontaneous laughter.

xx

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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Give me strength and a cleaner

Same shit different holiday haha

The Life of Reilly

I despair at the state of my house.  It’s bad enough when the kids are at school but this week has brought it to a whole new level.

Toys that are usually restricted-ish to the conservatory have spread like the flu and are literally everywhere.  There is play doh in my knicker drawer and cars covered in toothpaste with toothbrushes down the toilet . Nothing has a battery in and Reilly tails me all day with a screwdriver to replace them with equally dead batteries  that he’s found in a drawer of things we keep and never use or need.  There should be tea towels in that drawer but seriously who has tea towels when you mop up 20 spills and floods a day, yesterday I moved onto using the beach towels from our holidays for a particularly bad 6 pint semi skimmed milk slick.  I even used a sock yesterday for the cracked egg…

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Autism expert

Michelle Sutton

I saw an advertisement today that was promoting a talk by an autism expert, a man who has an autistic son. A few days ago I saw a link to the website of an autism expert who is a psychologist and researcher. Last week I saw a short video explaining autism made by an autism expert who teaches about autism at a University. The week before I saw series of infographics made by an autism expert who is an author and counsellor to autistic people.

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Mental

I must apologise for my lack of blog posts recently I have had to take some time to step back and breathe after the incredible response to my husband’s social media rant.  If you missed it you can catch it here …….

The fallout from his spectacular f-bomb laden rant has been tremendously positive. Heartbreaking to hear so many stories of exclusion from all over the world, promising to hear people admit they acknowledge a lack of empathy and their need to change.

That post was not meant to go viral.

When it did,  although I embraced it and ran with turning it into a positive from a negative,  in reality it actually terrified me. I am and have been for the last 15 years a sufferer of depression, anxiety and OCD and to be thrust under the spotlight like we were was extremely daunting.  Parenting criticised, by idiots granted but still hurtful nonetheless.  Trolled, not as much as I imagined but they still came out from under their trip trap bridges to throw the odd insult.  This behaviour is difficult to manage by most.  I however am not most.  It has given me many more sleepless nights if that is even possible.  I have analysed every post and comment, dissected it and gone back to look at it a bit more.  Thats what anxiety does.  It’s relentless. I stopped reading at your son is a window licker.  The positive posts were amazing and we’ve been thanked a million times over for having the voice to say things that others haven’t been able to say.

When I was asked recently if I would like to appear on the radio show Mentally Sound on Spice FM I jumped at it. Another F”#k you to my anxiety that I will not be kept down, I can do these things.  I love talking about mental health and it really frustrates me that people still feel uncomfortable talking about it.  I understand why – stigma, stereotypes, etc have a lot to answer for.  After all it’s not often you see mental health painted with a lovely picture it’s often accompanied by a horror story in the media.  I have to speak for Reilly while he has no voice or finds new ways to project it and I will do the best that I can to advocate for him.  I see posts on social media all the time about parents worrying for their kids, thats what we do as parents, worry but multiply that by a million and you may be getting close to my struggle.

The lads Ricky & Steve made me extremely welcome and it’s great to sit and talk to others who are unafraid to bare their souls on the subject.  It affects all of us in one way or another.

Link to Mentally Sound Podcast I’m first guest on about 15 mins in.

Speaking of mental health recently there was a debate in the Houses of Commons about autism and suicide attended by approximately 10 MP’s.  Now a recent study shows that autistic people are 9 times more likely to kill themselves than NT’s and will die on average 16 years earlier.  A handful of MP’s to debate this isn’t good enough.  I’ve been on to my MP to find out why she wasn’t there.  You should do the same. You can find your MP and how to contact them here.   Mental health services are an absolute shambles, people who want to help can’t and people who can help are stretched to the limit.  Waiting lists are too long and people are suffering horrifically.  It has to change.

Top points from talking at Mentally Sound were:

Let “talk more, judge less” be your mantra and we can’t go far wrong. Talking helps.

Use the #askingautistics hashtag on twitter.  As I said in the interview I am an expert at being Reilly’s mam thats where my expertise ends.  Get solid advice from actually autistic people. There is no better guidance whether you are a parent, a fellow autistic person, an employer, a friend.  I talked for 2 hours with an autistic adult last week and he blew my mind with his concept of how Reilly’s thought process works.

ps want to help us tell it how it really is?  Then please donate to our crowdfunder if you can for The Life of Reilly pilot with offline donations we are headed for 3k.  This is our chance to educate a wider audience.  The play has done exceptionally well and returns to the Northern Stage on March 16th.   Tickets for The Life of Reilly available, it will sell out.

https://www.crowdfunder.co.uk/the-life-of-reilly-film-pilot-1

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I am jealous. There I said it. 

How things change ….

The Life of Reilly

This post did the rounds a lot last year about how jealous I was of everyday things.  Ive just read through them again and felt I needed to update them (in brackets and bold).  Amazing how your outlook can change, i’m always learning.  I love this boy to bits.

I’m jealous. There I said it.

I’m jealous of other families that don’t struggle like we do – I am jealous, I’m not proud of it. I am a green eyed monster. There are lots of things that make me jealous things that you probably haven’t given a thought to.

  • I’m jealous that you can go food shopping with your child and not have to dump your trolley and get them out because muller have changed their packaging or an unexpected tannoy announcement causes a meltdown. (I hate shopping anyway, online is the way to go).
  • I’m jealous that your child…

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