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

Conversation frustration 

​Reilly said cheese tonight. He’s said it before and I love it when he does as it lets a tiny chink of light through on what lies ahead. He went on to babble for about 15 minutes and for some reason tonight it made me really emotional.  

I cannot express how huge my desire to have a conversation with my boy is.  


He tries so hard. It makes me so fucking angry the frustration he faces daily to make himself heard. Don’t get me wrong we manage most of the time I know what he wants as he is a brilliant communicator via other means but sometimes it overwhelms me that he’s 6 and we haven’t had a conversation.  

Imagine having none of the magic conversations about the run up to Christmas, I tell him regardless and talk to him as much if not more than Alex and Ellis, sometimes searching on his face for clues that he gets it. I think he does there’s no flies on Reilly and I think he knows exactly what’s going on but I can’t be sure because he can’t tell me. He points to Cars3 track in Argos book and then at Santa so I know he’s made that link which is great and I’m now working on Reindeers and carrots.  Might not sound like a big deal this is just an example but apply to any part of his life. How was school today Reilly? Nope  I’ll just check what his teacher has written in his diary or I just don’t know. 

As a Parent it’s your job to ‘get it’. I need to know what’s up so I can fix it, help him, make him happy. Sometimes I just can’t figure it out and that pisses me off royally. 

In my poem called I’m Jealous which I wrote a while back I didn’t hide my jealousy of others in fact I was practically green with envy. I still am at some things and sometimes when my head is straight I know people might be jealous that they don’t have a Reilly. He’s awesome and I long for the day that we might talk, that day might never come I’m prepared for that, I think. 

The Life of Reilly and Tarly

Tarly is settling in brilliantly! We all absolutely adore him. Reilly is already starting to be more vocal around Tarly, attempting to say his name and usually shouting no when he’s hanging off his pyjama bottoms.

Things I have discovered since Tarly came to stay:

  1. Puppies wee a lot.
  2. I don’t like the smell of dogs poo.
  3. I feel like a pin cushion off his little needley teeth.
  4. Dog stuff is expensive.
  5. I ❤️ shopping for dog stuff anyway.
  6. I ❤️ the way he welcomes you even though you’ve just left the room for 5 minutes.
  7. I ❤️ how excited he gets the second we wake up.
  8. I ❤️ smelling the top of his head.
  9. I ❤️ the way Reilly interacts with him.
  10. I ❤️ that he sleeps at the bottom of Reilly’s feet.
  11. I ❤️ watching him try and jump up the first stair.
  12. I ❤️ that I can practically feel stress fleeing my body when I stroke him.
  13. I ❤️ to watch him playing with Ellis.
  14. I ❤️ this little lad as part of our family.

I have a really good feeling about Reilly & Tarly and cannot wait to see how it unfolds. I’ve started doing some training this week with Tarly so I can add that to my cv as well as nurse, negotiator, cleaner, teacher, house wifey, researcher, diplomat, advocate etc.

I’ll try keep you updated with their progress as often as possible. My new fave pastime is watching these two instead of the telly,

Holiday for one?

When a holiday is not a holiday. That’s what my last week has been. Reilly’s need to be beside me 24/7 has excelled this week. Probably because he’s out of his comfort zone but by Christ it’s hard work.  He wants me ALL of the time which sounds really cute.  Sometimes I can give it the smug one ooo look how I’m his favourite then other times I could pull my hair out to be alone for half an hour. It’s exhausting. Not only does he have to be with me constantly he has super enforced his rules of no one eats before him or takes a drink. If I’m caught having a sly swig of Diet Coke WW3 erupts.

Shane has tried many times to lure him away. In total in 6 days I’ve had my morning out with Ellis plus 3 hours on a sun lounger with my book. The time we are all in the pool together is great as I’m still there but try sneaking off to look in the tat shops not a chance. He’s got a built in radar that goes off everytime my invisible tag drops below 6ft radius. Other kids are invisible to him, even his grandma and granda have barely had a glance from him. The big bonus is we’ve had time as a foursome to splash about that never happens at home. Thank god Ellis has made some amazing friends to go on the slides and play footy with.

He has once made the kids disco, the one where you absolutely must not dance on the stage or go behind the wall where the equipment is 😬 but when he’s done he’s done, no negotiation thats near impossible with a non verbal child, he’s off as fast as a whippet back to the room.

My time for relaxing has been when I’m back in the room with Reilly at 7.30 after his chips. Tonight is 7pm and he’s sat with his lego on the floor happy as Larry. I haven’t got as far as getting into night time clothes. We’ve been for a walk to a cute ice cream parlour and Shane attempted to get him back to the room so I could sit down with a drink and eat my tea. I hadn’t even got back from the pop machine when he appeared at my side and tried to tip my plate for having the audacity to get my food before him. Screams, pouring pop on himself and throwing chips to the back of his mouth later I abandoned ship for the sake of the other diners and my own sanity , not for the German cow who glared at us the whole time for spoiling her Torte and came back to our room. All calm restored. Peace. Silence and half decent wifi. Just how he likes it, im fond too

I said after last years never again but we all love the sun and the beach and the food how do we find a balance? A villa I think.   Ellis looks forward to his holidays so much it’s unfair for him to miss out so much.

So holiday for one anyone?

Helpful holidays

Today’s musings. I’m so nosey when I’m on holiday. I’m always watching other families and how they interact, I’ve also spoken to quite a few other parents of autistic kids. We all have the same struggles. Why not just get a villa? I have a ten year old who loves making friends, getting ready for the ‘night time’, playing footy. And I’m a people person. I like talking to complete strangers and walk away content that I know where they are from and what they’ve had for their tea. I also want Reilly to be around others, it’s life. People won’t disappear as he gets older there’ll be more need for interaction. And most importantly I am not cooking on holiday. There are many millionaires in this world, billionaires in fact. I would really like it if one of them or even a double dragon would create a disability friendly resort.

Not just autism, any disability. Accessible toilets, parks, water parks. Rooms designed with people of a disability or different ability in mind. Here’s what would work for me if anyone would like to give Peter Jones and Deborah Meaden a nudge.

1 month prior to departing hotel to send pictures of the resort, not the ones an estate agent would use, the nitty gritty. How big the dining room is, what the air conditioner looks like, what type of toilet flush and shower head. What the beds looks like. You get the idea.

On arrival at said airport. Resort needs to be near airport no more than 30 mins drive. Accessible bus. No collapsing buggies or not being able to board with a wheelchair.

The rooms should have balconies that tall you couldn’t climb over but can still see out. They should have a means to lock the door or gate it from the inside. Everyone fears the child waking in the night and doing a runner. Rooms should be soundproofed too. Bathrooms again fully accessible. TVs should always have Disney kids channels available 24/7. Autism doesn’t sleep, neither do we. Hearing loops, signed welcome meetings, Braille hotel guides. You get the picture.

Specialised medical equipment that is bulky and essential should be available for hire without a charge and sterilising facilities available. Nappy store in every size and variety.

Dining room should be loaded with Nutella and sliced bread 24/7 😂 this is possibly one of the most important factors for us. Times should not be strict around dining. There should always be chips, chicken nuggets and drinks available at ALL times. Plastic plates to stop the clattering. Food could be packed into takeaway cartons and taken to the rooms. PECS visuals.

Entertainment should not be as loud and god forbid I even say it but children should be able to dance on the stage!! A playroom available at all times again 24/7 not just 1-3 and 5-7 for the kids who don’t like gangnam style.

DVD players in all rooms and a selection on DVDs available from reception.

The hotel should have direct access to the beach with walkways provided for wheelchairs, buggies etc. All parents should have walker talkies to summon bar service so you don’t have to disrupt said child.

I could go on. Maybe a petting zoo and a couple of accessible rides. Staff trained in special and medical needs would help enormously.

I’m waiting …….. until I win the lottery we’re relying on you Peter Jones. If you build it they will come 😬