What would we talk about my boy and me?

It’s my birthday I’m 46 and feel 90!! It’s bittersweet for reasons many of our friends will know. ❤️

Shane took a day off work so we could grab a few hours together child free. Trip to the metro centre for some new make up, god knows I need it and some Lebanese food. Perfect.

Home just in time for the kids arriving home. Reilly as per usual throws his car keys at me which means let’s go mother and I always oblige. I asked him where he wanted to go and usually he would grab my phone and type it in. It’s usually in no particular order Airbox, Burger King, Spar, skatepark or Ace Playce. I need season passes for all of them. This was his reply today ….

Now what can I say about this. I drove away feeling incredibly emotional. I’m always told accept him as he is. I do but god I want to talk to him. There’s a pit in my stomach that aches to have a conversation with him.

What would we talk about? His enormous hate for undercrackers? Why he puts his chin in my eye socket when he’s trying to fall asleep? Why does he headbutt the wall when we try and wash his hair and slam his knees onto the bathroom tiles with such force it cracks them? What is he thinking about when he roars in spontaneous laughter? What’s his favourite song? Why always vanilla with a flake? Why is the food always beige? Why the back seat on the right hand side? Why’s he terrified of The Lion King? What’s his favourite colour? Does he like school? Why I can’t drink a cup of tea? Why he’s never cold or the attraction of the sea? The list is infinitive. There will never be a question that doesn’t need an answer.

Today I saw progress and I felt hope. I’m happy. Today is a good day ❤️

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Safety First

Today I had the absolute pleasure of being able to help Reilly’s amazing school. I’d had a conversation with them before Christmas about how difficult it is when our kids are ill, communication being the main factor. When Reilly is feeling unwell he doesn’t tend to point to where he hurts, he doesn’t talk; he lashes out at me. His way of showing me he’s not happy. As a parent your main priority is to mend and make better – this is no easy task with Reilly. Then there’s the going to the doctors, the treatment, new equipment he’s never seen before, lotions, potions and medicine etc. It all needs explaining, he needs to be prepped.

We decided that new PECS cards to keep at home and some social stories would work perfectly to ease frustrations on both sides.

So today I organised for my good friend and amazing first aid trainer Chris Bull from FIRST AID NORTH EAST to come along to the school and teach some of us parents what to do when there’s an accident or emergency. As many of you know I’ve run a charity with my sister in law for the last 6 years and Chris has done numerous training sessions for us. He again gave his time for free to help today and I’m incredibly grateful. I learned a lot too. Each parent had the chance to focus on their main concern and ask lots of questions too.

It went so well we will be working with Chris further to provide future sessions of the same style.

** I’ll be posting a link to children’s first aid kits with these PECS cards attached in the next couple of days. Another great contact at JAX FIRST AID can provide them at a discounted rate.

“My first aid kit consisted of a liquorice allsorts tin from 1994 with 5 plasters some out of date savlon and some drawing pins. Not anymore!!”

12 years

12 years ago after the birth of my second son I had a breakdown. It was the worst experience of my life. I had severe post natal depression and peri-natal OCD. Peri-natal OCD is possibly the cruelest form of a mental health problem I’ve come across. This isn’t lining baby bottles up or being tidy. This is trying to make a bottle and convince yourself that you haven’t filled it with salt (obvs haven’t but you check, you check again, one more check, you throw away – just in case, you start again). It’s exhausting. You have this teeny human to care for and all you can think about is the harm that they could come to (obsession) and spend your life making sure that doesn’t happen (compulsions).

This is not a combination I would wish upon anyone, not my worst enemy. I couldn’t travel alone on a bus into Newcastle, couldn’t nip to the shops or take my oldest to school. On the rare occasions I did venture outside I wouldn’t/couldn’t speak to anyone. It was the darkest place I’ve ever been to. I ended up moving home with my parents, only they knew the true extent to how bad I actually was, taking sleeping tablets 6 nights a week for some respite from my inner turmoil while anti depressants settles themselves in as my new sidekicks (still with me, couldn’t live without them). I could no longer work in finance and found myself with no job for the first time in my life. I felt I was a failure and the world would be a better place without me.

If you’d said to me then Christine hang on in there. You are going to make a difference. You’ll play a part in saving lives through the charity. You’ll produce theatre shows and a film. I’d have christened you barmier than I was. But look what’s happened! Granted I still take meds – no shame in that, I practise mindfulness and really try to keep on top of my mental health.

When I talk about being driven you have no idea how much I’m driven. I see these opportunities as second chances. I see them as my way to cover up some of the cracks in my own walls. Being driven fuelled with anxiety on most days is bloody hard. I hate anxiety, sometimes I want to get the kids off to school and then hide but I don’t I sometimes need some encouragement to keep it moving and I do my absolute best.

The Life of Reilly is cathartic for me. I love writing when I get the chance. I love to share our experiences and feel I’ve evolved over the last 3 years of writing. I hadn’t a clue when I wrote my first blog that it would be viewed all over the world. I get thanks from countries I’ve never heard of because they feel like they aren’t the only ones ballsing this parenting lark. I get it wrong. We all do but I do my best.

I will do everything in my power to ensure that the stage play travels. I will work my nuts off to make this film. Wherever possible it will include autistic people. Acting, crew, runners. Everything in my power to make it happen. There are important issues to raise and millions to educate but I need your help to do it.

If you can help with any aspect of the film be it donation of time, sponsorship, product placement, locations, expertise then please shout. We have some great fundraisers coming your way including a Midsummer Nights Dream Ball!!

Moral to this one is no matter how shitty you feel there is hope on the horizon. Keep your chin up, seek help, take the meds, speak to the counsellors just do what you’ve got to do when times are blue. Never be afraid to speak up.

Great things could be just around the corner xx

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

Shear(er) delight!

Recently I had the absolute pleasure of attending the Alan Shearer Centre with local group SPARCS. I’d never been before but Reilly is a regular and has attended many times with school to use the hydrotherapy pool.

Its fully accessible for those with limited mobility and located just off the A69 its set in over an acre of beautiful grounds complete with woodland walk, sensory garden and specially adapted play area.  A hidden gem.  Plenty of seats and perfectly kept lawns for those budding number 9’s to have a kick about.

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Inside there is so much to do.  The ladies on the reception were incredibly helpful and enrolling Reilly as a member took all of 2 minutes, membership and use of the centre is FREE.

Reilly loves all the sensory activities the centre has to offer and was very welcome for a cool down on an incredibly hot day.  I love watching these incredible kids at play.  Fascinated, focused and happy. I also love watching parents, grandparents and carers being able to relax, without judgement in a place they feel very welcome.

 

 

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While there I arranged for Reilly to visit the hydrotherapy pool in the summer holidays.  It can be booked for sole use in hour sessions which is perfect for and the general public who don’t need to be subjected to me in my cozzy.  We’ve chosen to share that date with Kelly and her little one, Kelly is one of the fab parents I met when talking about Reilly’s blog at a coffee morning earlier in the year.  I always get so stressed about keeping Reilly happy in the holidays,  I see a lot of time being spent here in the summer, even a cafe so no need for soggy sandwiches and warm pop.

 

It is well worth checking out SPARCS who run meet ups for autistic families at some excellent places around the North East and of course The Alan Shearer Centre and all they have to offer.  As well as the activity centre they have The Alan Shearer Short Break Centre and The Specialist Residential Home.

Check it out and if you see us there make sure you say hi!

x

 

Yoga

A few weeks ago I signed up to a beginners yoga class.  I practise mindfulness daily and love it.  It helps ground me a little and puts the brakes on the internal chatter my mind partakes in constantly. Yoga seemed to be a natural progression.

Myself and Kelly got there for class at 6.30 all the teas had been prepared before I left, my dad was watching Reilly until Shane returned so happy days I was off to de-stress.  We decided to try Yoga Hens after a recommendation from a friend.  The room was dimly lit with candles, warm and was playing some ambient music.  Perfect.  The mats were lined up on the floor with little cushions and blankets, maybe I was going to get some kip as well this is just win win win.

My stress levels of late have been through the roof.  Half term saw the shoot for The Life of Reilly as well as our first charity heart screening weekend.  That’s a lot of juggling for the work life balance.  Ellis my 11 year old has been stressed to bits because of SATS, SATS for gods sake.  I said to him do what you can and that’s it.  Do not worry about results because I won’t.  He is also feeling the burn at the moment from Reilly and his superglue attachment to me and it’s highlighted the need that we need to work harder at our family dynamics as it is far too easy to just keep Reilly happy as we can and siblings can and do suffer.

I ran out of melatonin and had none for most of half term week.  You can never get it next day its always a few days so that meant that I also had little sleep.  I do all I can to try and keep stress at bay.  I’m eating better, i’m going to the gym, I meditate every night but I’m still incredibly anxious.

I was excited to start yoga but I made a fatal error.  I had beans on toast for my dinner before the class.  I have never ever in my life been that stressed.  I actually pretended I had cramp in my foot to get out of my downward facing dog because an upward facing fog was about to descend on the room.  Awful.  I was shaking with fear on letting one slip.  Next week there will be no beans or pop.

All in all I loved the experience, I’m incredibly not bendy to my disappointment I wanted to be all goddess like and graceful. Instead I fell off balance constantly but tried my best, I muttered Jesus Christ more times than I fell over and felt sorry for the lady behind me having a massive clothed moon in her vision for most of the class.

I’m hoping my path to enlightenment is a quick one and I can be all chill and wear lycra without fear.  Can’t wait until next week and see what we have in store.  No beans I promise.

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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).

 

 

 

 

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