Go the **** to sleep!

I’m currently on approximately 12 hours sleep in 36 hours.  I have a chest infection which makes me cough which in turn causes Reilly to have a meltdown.  To say I am pissed off is a massive understatement.

Reilly takes melatonin, theres a bit of mixed reaction to it, some parents see it as drugging your child and that it’s actually a little bit selfish.  I on the other hand will stop you right there.  When my health visitor passed me in the street after not seeing her for quite a few months about  1 year ago I looked like something from The Walking Dead.  Reilly would never fall asleep before midnight and would wake at around 3-4am, not his fault it’s common in children with autism. I was exhausted and frustrated and could not see any light at the end of a very long dark tunnel.  When she recommended it I felt a little glimmer of hope.

Melatonin is a hormone produced by the brain that kicks in when it starts to get dark and will make you feel a but sleepy.  It’s not a sleeping tablet, it helps you fall asleep and it works lots of the time but not all the time but when you are at a stage in your life where you think anything over 4 hours sleep is a bonus its time to reevaluate and look at your options.

Sleep deprivation is wicked. It affects your relationships, you become a vile cow who hates everyone especially those who think they are tired because their child woke up for a drink, it affects your well being – your immune system suffers and it makes you feel like a depressed anxious failure. For your child it affects their learning, their mood, their growth and ability to function properly.  So we all agree sleep is essential.

I wouldn’t be without his melatonin now I take the bad nights on the chin along with the ones where he needs a break from it (it can’t be administered every night) and I try and enjoy the good ones where he’s snoring at 9pm and I can’t decided whether to stay upstairs with him and have an early night or run downstairs and have cups of tea and watch crap on the telly, it’s usually the latter. Me time equally as important as sleep.

Last week Reilly was changed over from his normal liquid melatonin (very expensive) to the tablet form and it doesn’t agree with him! Good god he’s wild!  He is waking at 2am every morning and is really aggressive. Scratching me, pulling my hair, screaming, throwing things.  This happens till about 7am when he falls back asleep for a couple of hours.  Needless to say I’ve requested the liquid melatonin back and hopefully have it in my tired paws by tomorrow.

I cannot stand how angry, impatient and generally crap I am with no sleep, everyone suffers because of it, added to that the constant melting down because of my coughing and the fact that an SEN parent isn’t allowed to be ill or tired because the day doesn’t stand still for us, couple of hours in bed – not a chance!  It cracks on at it’s normal speed leaving you frazzled in it’s wake praying for a better night.

Keep everything crossed for me tonight as Reilly will be tablet free I’d rather go another 24 hours on 4 hours sleep than see him like the wild child of late.

ps if anyone heard me last night I was just reading from this book.  I promise! 

Go the Fuck to Sleep from Julien Devlin on Vimeo.

#zzzzzzzforchristine

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.

 

 

Supermam

My last post Grim was pretty deep and deathly I thought I would share some of my thoughts as a mam.

Its easy to feel under pressure to live up to the special needs supermam title, especially not in the summer holidays.  I’m not one of those – I wish I was.   The school holidays have nearly killed me I can’t lie.  Reilly is now a permanent fixture on my leg which is lovely but not 24/7 and especially not when you need the toilet or a bath – he likes to put the toilet brush in and give it a good mix, put my fave Lush bathbomb’s down the toilet if i’m silly enough to turn my back for a second and if he gets in with me he cleans his colour change cars with a toothbrush and likes to alternate the taps between red hot and icy cold for maximum effect.  He particularly likes the pool of water left behind me when we pull the plug out, the  effects of the  Christine  Arse Dam.  Bit like the Hoover Dam but bigger and less attractive.

I’ve said before in the post I am jealous. There I said it. that I envy the supermams, I still do.  Everyday I scroll through my twitter and facebook feeds to an abundance of craft making, zoo visiting, picnic eating, sandcastle building supermams.  The mam’s that can go for a 3 course meal in a pretty little cafe for knickerbocker glories when I struggle to keep Reilly waiting in the queue at the chippy at the top of the road for 5 minutes without a kickoff or running on the road. Christ if I can get to the park for 20 minutes on the swing I feel like I’ve climbed a mountain. Get him to eat his dinner and i’ve not just climbed a mountain i’ve conquered one.  Someone suggested the other day I take Reilly to an autism friendly cinema showing.  I’m not brave enough for that yet i’ll stick to Alvin and the Chipmunks in the safety of my own home for now.

I’m not a natural goddess type, don’t forget I’m the mam that sometimes lets Reilly fall asleep in his school jumper then sends him in the very same one the next morning, the mam who knows he’s emptying the coco pops on the kitchen floor but doesn’t jump up to stop him because I know it will keep him busy with a hoover knozzle for at least half an hour.  Greatest £2 ever spent in my opinion when in fact I’d spend £5 on a half an hours peace. Supermam I am not.

I had no melatonin a couple of nights ago awaiting the prescription to be picked up.  My whole day was consumed with the worry that Reilly wasn’t going to sleep when I was already sleep deprived and ratty.  I had to think on my feet.  I had an empty bottle so I turned it upside down for the day just incase I could manage a dribble, better than nothing.  Bit like when you’ve got fish and chips and there’s a tiny squidge in the bottom of the red sauce bottle.  You will get it just takes some patience and a bit of coaxing in the right direction.  Supermams wouldn’t have let that ruin their day stressing about sleep they’d have prepared a lavender bath, warm milk and mood lighting.  When the time came to get his melatonin it was moving as fast a cold larva out the bottle.  20 minutes I stood there waiting for a couple of drips.  20 minutes well spent it turns out.

Question is are the Supermams real? Have they just got more patience than me?, I have tons I really do! Is life really as peachy as that or are they just as demented as me?  Answers on the back of an IEP.

Not long though folks September is in sight.

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x

 

Grim

OK so I have something on my mind and I cannot shake it off.  Usually around this time, 10 pm when it sneaks up on me and keeps me awake.  It’s really simple but it’s a question that millions of parents ask themselves everyday, it’s normal to worry about your kids futures but some of us parents have to put plans in place now, just in case.

The question is “What will happen to my autistic son when I die?” then there’s the cheery followup of “What happens if me and my husband are killed in an accident tomorrow?”

I talked about this with my Mam the other day, she was actually crying just thinking about it (may have been the thought of inheriting Things 2 & 3 for good, jury’s out on that one).  “Oooo I can’t even think about it” she said.

Well fact is we have to.  Alex is 20 this year is a drummer in a band and starts college in September he has his Dad and others to watch over him.  Would it be fair to ask him to be guardian to his brothers if we died tomorrow?  Is he capable?  My honest answer is no.

My Mam came up with the solution that her and my Dad would move into my house with Alex and they would do a group effort.  Bless her I know she was grasping at straws but that can’t happen.  I’m 43 and exhausted,  they are 70.

If we manage another 10 years I’ll be relieved that Ellis will be a young man and hopefully be able to stand on his own two feet but Reilly, Reilly will  still be autistic, autistic children become autistic adults,  he may  still be non verbal.  He may never work or live independently. There are no guarantees in life that’s for sure.   What do you do here? because I really don’t know.  Other parents must lie awake obsessing about this too. Whenever myself and Shane discuss I just feel sick to my stomach and get extremely anxious. I want the days back where I worried about what shoes went with my outfit and whether i’d have enough for pitta bread with chips on the way home.

We need to make a will but I don’t know what to write in it.  Would I trust our government to ensure he’s cared for? absolutely not.

Reilly comes with a special skills set that not everybody has. I would love to hear other parents thoughts on this. I know i’m not alone.

Sorry it’s grim but it’s a very real, worrying issue.

 

The welcome surprise

I was just gearing myself up for the 25th viewing in 7 days of Alvin and the Chipmunks Road Chip when I got a message from my Mam.  It read ‘Get Reilly ready your Dad is going to take him out on the bus somewhere’ Pardon what?  I was off that settee quicker than Jack Flash and had his backpack packed and shoes on in about 60 seconds.  I love the little blighter to bits but when you get thrown a line like that one you can’t hang about. what will I do read a book, clean stuff, go to sleep, go out, sunbathe – possibilities are endless!

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Reilly was happy to go because he knows my Dad will get on as many buses as he fancies and won’t moan about it whereas I always have something else to do or somewhere else to be.  I waved them off and then sat down on the settee looking about the living room to ponder what I should do with my surprise break.  Play-doh with bits of hair wrapped in it on the TV cabinet and half a Thomas track set up, Ive seen it worse so no need to rush and get tidied cough cough.  Conservatory looks like a Toys R Us typhoon has run through it which I simply brushed to the one side where the curtain hangs over the door more so you can’t really see it.  Opened the garage door which has never contained a car, just boxes of crap that no-one wants but can’t be bothered to take the tip, mountains of tumble dryer fluff and a defrosted ice lolly –  stayed in there just long enough to grab the strawberry sorbet out the freezer then quickly shut the door again, not today garage.

So I sit eating strawberry sorbet and not doing the online shopping as requested by the husband because quite frankly I despise it but it’s better than taking Reilly shopping in person.  I cooked Shane some sausages last night for tea, Reilly grabbed a bowl and scooped up the dish water and added to the frying pan they were like broiled, soapy half cooked turds.  I switched off the gas and pondered what else to make him.  I needn’t have worried Shane said and I quote ‘nowt wrong with that man’ and proceeded to drain them off and refry them.  Absolutely disgusting.

I’m a little bit lost when I’m on my own but i’m not complaining I might even make a cup of tea without having to shield my cup from Reilly the Destroyer and catch up on Secret Agent or I might clean the bathroom, choices choices.

The moral to this story is have some downtime where you can.  It might be another fortnight before you get some.  Have a cuppa – stuff the washing!

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About a boy

If you have read my previous blog post A random act of kindness you will know all about my trip away with Thing 2 Ellis, if not read it now so it all makes sense.

Yesterday we headed into Newcastle for a night at The Copthorne Hotel on Newcastle’s Quayside courtesy of the fabulous Jeff & Lesley Armstrong.  We had a fantastic time,  I miss my one on one time with Ellis so much and it is essential I grab it whenever I can.  He is amazing company and his crack in unbelievable.

We had some lunch, walked along the Tyne, took photographs, looked at baby phototgraphs on the laptop, discussed dabbing, gave a homeless man £2 (Ellis’s choice) and talked about everything inlcuding which floor is best to be on if a hotel collapses and the skills of the F2 Freestylers.  It was perfect and I am eternally grateful to have been able to do that.  I also got the chance to think,  something I try not to do very often as it usual ends with anxiety or something to take up more of my time.

Watching Ellis asleep last night, happy and cozy made me realise how lucky  I am.   Whattt not having that she’s feeling lucky and happy queue the anxiety, the bedtime bastard that visits just as you are snuggling down.  Thought I might have left him at home but no he must have jumped in on the way out the door and my specialty anxiety topic at the Copthorne was guilt.

  • Guilty that I don’t have enough time for my lads.
  • Guilty that we don’t have enough money even though Shane works like a trojan but I can’t.
  • Guilty that I can’t do more.
  • Guilty that Shane and I never spend any time together.
  • Guilty for spending time with Ellis knowing Reilly may be melting down at home (he didn’t, he was fine).
  • Guilty for spending time with Reilly when I should be with Ellis.
  • Guilty because I couldn’t see Alex’s band play last night because I was with Ellis.
  • Guilty that I’d rather sit on the settee than go to the park.
  • Guilty that I wish I had an easier life.
  • Guilty that I do have an easier life than many.

Just the biggest ball of guilt in guilt town basically.  The list could be as long as your arm to be honest.  But I came to a conclusion last night.

That conclusion was you know what, actually fuck it!

I can’t do anymore its not physically possible.  I could be better organised and that’s something I will have to work on.  For now I’m happy watching boy knocking out peaceful zzzz’s in a beautiful bedroom while I watch the lights bouncing off the Tyne and the trains passing by outside,  this is one night anxiety is not getting into bed with me;  so with a swig of my soya milk tea, a bite of my GB Cupcakery brownie (vegan – to die for),  a sniff of Ellis’s Rocky Road and some much needed mindfulness I actually drifted off.

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Ellis and his Rocky Road!

We had an amazing time.  Ellis needed it.  I desperately needed it. I can’t wait til we can do it again and I can repay Lesley & Jeff for their incredible kindness.

Needless to say when Shane picked us up Reilly legged it into the hotel and pressed all the buttons on the lift and I carried him out screaming.  Business as usual but batteries recharged and ready.  Love my boys xx

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A random act of kindness

Last night I posted to my Facebook asking if anyone had any links to hotels for a cheap overnighter.  I really need this at the moment but more importantly so does Ellis my Thing 2.  He’s almost 10 and is craving  time alone with his Mam.  I don’t think anyone can appreciate how difficult it is to keep a neuro-typical child topped up with much needed attention when you have an autistic child, especially in the school holidays. I’ve been known in the past to keep Ellis off school when Reilly is at school just so we can just go for lunch together.

I’m always on call, always on lookout for Reilly  he’s attached to me like velcro pretty much all of the time.  When Ellis tries to sit beside me Reilly will squash in the middle and scream in Ellis’s ear until he eventually gets sick and moves.  It’s so hard.  They don’t want to go to the same places which happens in all families I know but with this one there is no negotiation with Reilly and pretty much he always gets his way because Ellis will cave because he can’t stand the fallout and I feel so guilty.

What Ellis really loves is a night away with me, just locally.  We have tea, watch films, eat sweets and we sleep!

So imagine my shock this morning when my friends and legends Lesley & Jeff Armstrong rang me to say they have booked myself and Ellis into the Copthorne Hotel  in Newcastle tomorrow as a treat,  I’ve known Lesley & Jeff quite a few years I even took their wedding photographs complete with their fabulous Border Falcons and Sheikh’s, I was bloody terrified!  

I never expected this.  I’m absolutely gobsmacked.  I have cried so much this morning because it is such a lovely gesture I just can’t quite get over it.  

There are good people in this world my faith has been restored.

An enormous thank you it is appreciated more than anyone will ever know I have one very happy little boy. xxx

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