The Mams

The last couple of weeks have been incredibly busy.  Preparing for an invite only performance of Life of Reilly at Northern Stage, preparation for the ball on 1st June at Hilton, pre production film meetings as well as the other 2 million things I do to keep us ticking over with Reilly is keeping me on my toes so to speak.

Tonight was final rehearsal before the show.  I went along with intentions of watching but ended up sat with ‘The Mams’.  We drink tea, they help me with any questions I have and offer their help, they also lend me an ear.  We have built up a little comradery.  They are supporting their daughters but also us in the quest to educate more people.

We got on talking tonight about sleep.  I started to recount the days when Reilly was little and by surprise it made me very emotional.  I can look back now and see how far we have come.  Reilly was around 4 years old when my health visitor drove past me in the street with Reilly and turned around to come back.  I looked horrific.  I was barely functioning on around 3 hours sleep.  I told her I felt like I would die or have a nervous breakdown if I didn’t get some help.  Prior to this  Reilly didn’t just not sleep,  he screamed most of the night.  Inconsolable real tears and we didn’t know why.  He couldn’t tell us.  Was he in pain?, had he a nightmare?, was he frightened?, We had no idea.  Nights turned into months and even into years and we coped best we could.  Shane trying to sleep as he was up so early for work but spending much of the night as back up for me and taking his turn at swaying Reilly looking at the stars, something we would do for hours on end.  Ellis my middle son near moved in with my parents just to get some sleep.

At the time I felt like a massive failure.  One child I didn’t understand and the other didn’t want to be in the same house.  I was lucky that I didn’t have to go to a 9-5 job,  if I did I’d have surely been sacked.  I tried catch up when I could but chances were few and far between.  There is only so much your body will take before its says enough is enough.  I was at this point.  

A day after my chance run in with my health visitor  I picked up a prescription for melatonin – melatonin is naturally produced by the body to regulate the sleep-wake cycle. Its levels begin to rise shortly after nightfall, promoting sleep.  I was terrified to give him it,  Was I drugging him? Was I copping out? What would people think of me?  All the normal what if’s.  I can put my hand on my heart and tell you that without that run in I was indeed headed for a breakdown.

We’ve moved forward in so many ways.  Not thought about that grey area of my life for a long time.

We struggle but we’ve got this. Talking helps.  I’m lucky I have Alison & Kelly who have been there and bought the slightly different t-shirt but always on hand for advice.

To The Mams as I lovingly refer to them thankyou ladies for the support for The Life of Reilly and for me.  Appreciated more than you know. x

 

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Negotiation

With my oldest 2 I could pretty much always guarantee swinging the odds in my favour. Be it a threat when they were little about Santa (yes I’m that Mam with his photo stored on my phone for when he rings) or work a trade off we can do X if we do Y first, if you don’t I’ll lock you in the shed with the spiders type of thing 😂

Jesus it’s a whole different ball game with Reilly! He’s having none of it.

“Reilly you cannot split bin bags of rubbish in the street” If he could speak I know he’d say “Watch me fool!”

“Reilly if you do that Santa won’t come”. He responds with a tap to his chin as if to say yes. He gives no shits.

“Reilly don’t you spray that”. 2 seconds later ….

“Reilly the door is locked you can’t go rifling bins”. He then hunts down a screwdriver to try and take off locks.

He’s like a cat. Does what he wants and when. He’s stubborn enough to train one.

The stress levels in our house this weekend are through the roof !

My question to you is how do you negotiate with your child? Can you negotiate with them?

As you know Reilly is non verbal or pre verbal I think now. But this goes out to all parents of autistic children.

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 ❤️

Sign of the times

Been to the beach with Reilly tonight. He didn’t want to go to school this morning but I promised him when he came home we would go. Sun was shining and why the hell not!

He came straight home and emptied his school bag and packed it with essentials. Today that was a spoon out the kitchen drawer, the cup that holds the toothbrushes, suntan cream, a towel and his shorts.

We are incredibly lucky to have our beautiful coast 10 mins away. I love the sound of the sea it so peaceful until we arrive and the air is pierced with “Reilly that’s not your ice cream” “Reilly put that back” “Reilly not past your knees” “Reilly put your pants on”.

He loves it. I don’t care what others think. I made an observation tonight though which is important.

Reilly has a moment while we were there. He was starfished, pardon the pun, screaming, I couldn’t stand him up, pick him up or carry him. People look. Doesn’t matter if you are in a supermarket, on a bus or on a beach. I don’t care. I’m five years in. Someone irrelevant judging for a brief moment in time is not a battle for me. But those new to the journey wanting the quicksand to swallow them up what about them?

I’ve learned that judgement stops the second they see us signing. Literally from grimace to grin from urgh to ahhhh. Because they can see it. They go from throwing evils to being in awe of this beautiful boy. If you don’t know Makaton there are millions of vids on YouTube. The girls in our local Spar are picking up on Reilly’s for ice cream, please, thankyou etc

Next time your in a spot and feeling overwhelmed whack out some Makaton and watch the judgement shift. I guarantee it will. Failing that show them the finger and crack on regardless ❤️

Taxi Driver

For most parents their kids will go to their local school, certainly where we live its an approximately 3 minute walk from my house.  Biggest nightmare is that it’s raining or that you have to carry a scooter.

For us it’s really stressful.  Reilly gets transport to school so has a driver and an escort.  We’ve had a few over the last few years and the most recent escort we are really comfortable with. Reilly likes him which is huge.

When your child is non verbal or doesn’t communicate trust is an enormous issue. I’ve written before about leaving no stone unturned while investigating drivers and escorts before meeting Reilly.  Checking social media, local online news etc (I’m not kidding).  Ive probably snooped on their cousins boss at one point looking for anything that could set alarm bells ringing.

There is currently no legal requirement for the escorts (or drivers) to know anything about autism.  It is a recommendation but not a requirement.  This doesn’t sit well.  A meltdown can be terrifying for the child but also the person responsible, surely to have some awareness of what may cause one and how to help during one would be beneficial for all parties?  So many potential triggers that you wouldn’t dream of in a taxi – air fresheners, radio, other kids, seating positions etc.

This morning I heard the words I have been dreading. “Hi Chris just to let you know tomorrow is my last shift”.

Shit, I’m gutted.  I’m so stressed.  Reilly may love the next person, he may hate them.  Who are they?  I have no idea and its terrifying.

I created this petition recently and would be really grateful if you could sign it and share it.  Having taxi companies taking part in an awareness session as part of the terms of a councils tender would be incredible.

 

 

 

 

 

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