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).

 

 

 

 

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My Sons not Rainman

I came across this book while browsing twitter one night while lying in bed worrying about the future as you do, well I do.  I sometimes lie for hours scrolling through #autistic #autism #meltdowns making myself feel better with other peoples frustrations or jubilations.

I liked the title immediately.  If you have an autistic child you will be familiar with the fact that a lot of people expect your child to have a remarkable magic talent.  “What’s his thing?” “I bet he’s good with numbers” are the common ones.

Not all autistic people are Savant’s. Savant’s are people who have incredible abilities usually falling into a few different categories to name a few:

Musical abilities – being able to playback perfectly a piece of music after hearing it only once.

Artistic abilities – Stephen Wiltshire a prime example his ability to remember skylines and reproduce them in drawings is breathtaking.

Calendar Calculation – being able to produce the day of a week a date falls on thousands of years away.

Memory – Reilly has an awesome memory and shocked us all when he started to google  bus registration numbers and we realised they were actual buses he had been on or seen weeks even months before – but I don’t think he’s Raymond Babbitt. If he is I’ll meet you at Aspers!

The book written by comedian John Williams really struck a chord with me.  I related to everything he said but its so funny too.  My favourite part is his disability top trumps and that SEN parents can be arseholes too.  I don’t want to spoil it for you.  But I am guilty as charged – If your child had 4 hours sleep mine had 3.  I also lol’d at the school shoes and too short tracksuit bottoms I see this week in, week out.

It’s honest, it’s sad and its thoroughly enjoyable.  ‘The Boy’ as he is loving referred to has an amazing relationship with his father despite the many challenges they face over relationships, schools, behaviour, disability etc.

You can click on the link below for more information.  Myself and my Mam read this book on holiday and now my husband is half way through and loving it and sometimes not loving the stark similarities in our lives.  I thoroughly recommend it.

Relationship status

I made a tongue in cheek video today about keeping the spark alive for valentines day.

Relationships are so hard when you have a child with additional needs.  I mean how desperate are you when you’re thinking maybe a split will let me sleep a few days a week?  Sleep deprivation is an absolute killer.  I have learned to function on very little sleep when I do get the opportunity my head is filled with horror stories of what is likely to go wrong over the next week, month, year, decade, you get the picture.

I work really hard on the charity North East Hearts with Goals and on Alphabetically Autistic, I update Frankie Sherwood’s twitter account @helpfrankie and I try my best to keep our washing baskets (all 4 of them) below half way, this is usually a fail.  The house is not as tidy as I would like it to be and I really must try harder.  I’m out of the house every night after school rambling with Reilly until its dark so don’t actually get that much time.  Shane is the physical grafter and money maker, he works every hour god sends to allow me to do these things that I love.   He’s gone by 6.30am and he sometimes isn’t home until after 7pm, is it any wonder we get ratty?  That’s not to mention the hours between tea time and bed time (if there is one) where it’s just utter carnage.

It’s easy to take snipes at each other.  Well I do this and you don’t blah blah blah but we are a team.  One doesn’t work without the other, both cogs might be stubborn and one a bit more worn than the other but they work well together……. most of the time.

It’s hard to find romance in a life filled with stress and zero minutes alone time so I was over the moon to get a text this morning from Shane today to say he has sorted a babysitter (my dad) on Friday afternoon so we can go to a restaurant that i’ve been dying to try.  Priceless.  Just a few hours of no responsibility for us is probably the equivalent to a night away for many.

Happy Valentine’s ❤️

Team Stephenson

Today is Shane’s birthday he’s 44!  I even let him sleep in our bed last night with Reilly while I slept downstairs with my stupid cough. He’s so lucky.

Team Stephenson we are.  He’s not bothered that it’s his birthday and there’s no swanky present, he’s one of the least selfish people I’ve ever met.  EVERYTHING he does in this life is for us.  He works like a beast usually 7 days a week to keep a roof over our heads. We’ve supported each other through some really dark times.

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Don’t get me wrong he drives me insane, like literally around the bend (as I do him) with his grumping on and hopeless banter but as I was looking for old photo’s of him today (we’ve known each other most of our lives, apparently he fancied me at school which I very much doubt as I looked like a boy with a perm and pink lipstick) I found this poem that I wrote for our wedding in 2009.

I cannot believe how lucky I am to have a partner such as you

To bond in pure togetherness, happiness way overdue

I feel that now I can go on I am loved and I am needed

My perfect man no caution signs or warnings to be heeded

You make me feel so happy so fulfilled so content

You are strong and you are loving surely others will resent!

I think about our future and what it’s written in our stars

Happiness, fulfilment and a good life will be ours

I love you systematically without thought without pretense

I love you in a new way which is unbridled and intense

I thank you for the way you are and sharing yourself with me

Your wifey and your soulmate I’ll forever always be.

Christ on a bike I must have really liked him!  If I were to write one now it would be something like this….

Oh Shane of course there are no pairs of socks, you should know this by now

No I don’t know where your shoes are and no I’m not a silly cow

He’s an absolute godsend to me and our lads.  Our lives are HARD but we are The A Team for The A Word.  He is incredibly protective and one of the most decent men I have ever met.  So with that I want to say a big Happy Birthday to Shane he’ll probably read this while on the toilet at work making it so much less romantic but hey the thought is there. We Love you Fluffer x

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Look at those pre Reilly stress free faces!  He was definately punching though.

 

 

I am jealous. There I said it. 

This post has done the rounds a lot in the last 2 years 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. (2017 edit – I hate shopping anyway, online is the way to go).
  • (2018 edit – shopping is pants, still)
  • I’m jealous that your child wants to put carrots out for Rudolf, watch Elf and get excited at Christmas.
  • (2017 edit – Tricky one.  I think I miss tradition. Alex and Ellis are too old and I miss it.  Reilly does not. Me me me lol.  I still watch Elf, I still put the carrots out, the reindeer dust might land on top of the wheely bin but who honestly gives a f”ck?) Santa still gets here.
  • (2018 edit – haha! Up yours Reilly is loving it! We’ve got a plate for mince pies, he’s bought his carrots and we are having it this year!) .
  • I’m jealous you can stroke your child’s hair and take him for a haircut.
  • (2017 edit – I stroke it in his sleep, his hair is long, no biggy).
  • (2018 edit – after his hair tatting like a spaniels and his cutting his fringe his hair is now shorter. I can stroke it slightly more. Me me me).
  • I’m jealous that going on holiday for us means 6 months of displaying photographs as social stories of aeroplane steps, engines, seat belts and still having no clue whether he understands it all or not.
  • (2017 edit – there are worse things I could be doing at least we are doing it).
  • (2018 edit – been and talked to the airport about becoming more user friendly with ideas in the pipeline. We look at holidays daily on the internet and trust me no prep is required he loves it).
  • I’m jealous that your child does the actions to Incey wincey spider and sings along.
  • (2017 – never liked nursery rhymes anyway, usually creepy full of stories of wronguns).
  • (2018 edit – nursery rhymes are still crap and Reilly says moo and meows on old MacDonald’s farm. That’s enough for me).
  • I’m jealous you go to bed and sleep for more than four hours.
  • (2017 edit – Melatonin saved my life, true story). 
  • (2018 edit – melatonin continues to keep me and Reilly on an even keel).
  • I’m jealous that you can give your child food that is not just coloured beige.
  • (2017 edit – beige is nice, beige is popular).
  • (2018 edit – he now eats pizza and the yellow bits off haribo eggs, he’s healthy, it’s no biggy).
  • Im jealous of your play dates.
  • ( 2017 edit – sometimes – but I like it just me and him)
  • (2018 edit – still like our own company, our rules, our way, we leave when we want).

  • I’m jealous of family trips to the cinema. (2017 edit – £50 for a family trip and counting – you can keep it!)
  • 4 attempts at Peter Rabbit, still too expensive you can keep it).
  • I’m jealous that when your child is ill you can fix it and know what is wrong or where it hurts.
  • (2017 edit – STILL JEALOUS)
  • (2018 edit – still jealous)
  • I’m jealous that any snippet of spare time I get to spend with my husband is spent discussing worries.
  • (2017 edit – everyone has problems maybe thats what you do to?)
  • (2018 edit – I am a worrier, if it wasn’t Reilly it would be the river in York for my oldest at Uni, bullying for my middle child, health, money list is endless).
  • I’m jealous I don’t have time for friends. (2017 edit – YUP but i’m trying)
  • (2018 edit – must make more effort).
  • I’m jealous that your child can tell you they love you.
  • (2017 edit – He loves me I know it, I just haven’t heard it, he traces my face with the tip of his nose and it says it all).
  • (2018 edit – he signs it to me. I feel this is extra special ❤️

But you know what I am also?

Proud, extremely proud.

Have you any idea how hard it is for him to function in this chaotic world? He has the determination of 10 men, the independence of 20 and the stamina of 100.

I’m proud of every tiny step he takes and celebrate each one. Be it touching a piece of fruit, making a new sound or completing a 300 piece jigsaw!.

I’m proud that he is loving.

I’m proud that he is smart.

I’m proud of how hard he tries.

I have 3 beautiful boys and I am incredibly lucky. There are people wishing they had what we have but just sometimes I just can’t keep that green eyed monster at bay.

(Green eyed monster is kept at bay most days I am happy to update).

I feel sorry for those who don’t have a Reilly in their life, amazing what can change in a year.

Another year down more lessons learned, more understanding of my Reilly.