Son of Anarchy 

Been out today with Reillster, original plan scrapped when he wouldn’t get out the car at Jesmond Dene. Point blank refusal.

We ended up at Round the Twist. I should make it clear this is not my idea of a lovely afternoon.  When you take a non verbal autistic child into a rather large play facility you know before you walk in it’s probably going to be a nightmare.  Reilly isn’t bothered by the noise in there, he also isnt bothered by the other children so I’m lucky in that respect.  It’s like the other kids are invisible to him.  I can see the odd one try talking to him but they always end up shrugging their shoulders and walking away as he looks straight past them. 

The little motorbikes that he loves but always wants us to sit on with him were favourite of the day only today there’s no backers, he’s a lone rider, result.  We’ve bought a couple of ride on cars, battery powered etc and he pretty much eats his dinner in it a few times, it gets broken and it goes to the skip.  Not today he was cruising and like a Redwood Original –  in more ways than one because he also cracked the combination lock to the gate once the bikes were closed down and let loads of kids through, staff were amazed as were we. Lucky guess? 


His other favourite thing to do is go up the slide the wrong way, loves it.  A man clearly not happy with Reilly doing this came over and said “they have very strict rules in here about going up the slide the wrong way”.  Excuse me? “There are rules, they are strict about going up the wrong way”.  You can imagine my response – delivered while awaiting my arrest by the slide direction police.

Obviously couldn’t tell Shane which man had said it he’s not as charmingly sarcastic as me and prefers a more hands on approach. 

So in summary he rides a bike, picks locks, cracks combinations, hates authority and he’s cool as f@#k.  

Watch out SAMCRO new kid on the block x

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Fidgit Spinners

For a week now I have had my 10 year old Ellis tweeting in my ear or rather squawking for a fidgit spinner.  I’m seeing them EVERYWHERE!!  Kids, adults, for sale all over Amazon and ebay.

Anyway I ordered one a couple of days ago and he has been lurking around the house like Kevin the teenager and having epic radgies everytime someone pulls up outside and it isn’t hand delivering his spinner.  Where is it? has it been posted? whats the tracking number? has it got lost? will it come in a van or post? has it gone to wrong address? repeat repeat repeat with intermittent heavy sighs! First world problems for a 10 year old.

During a heated discussion this morning over whether I had actually ordered a fidgit spinner (it’s understandable, I always say I’ve ordered something but have really forgotten about it) Reilly comes in and launches this lime green ninja star Shuriken type spinner across the room.  It had arrived in the post and I hadn’t noticed! Hurrah no more wingeing from Ellis and Reilly has a new weapon (not so hurrah).

I’m happy though because it’s opened up the dialogue of stimming   << Click to read Stimming in the Park.  Ellis was astounded when I told him these gadgets have been around for a very long time.  If you see someone with a spinner don’t miss an opportunity to let them know who else may be using them and why.

ps Reilly isn’t particularly interested in it and i’m sure parts will be removable so with my Keith Lard health and safety hat I’d probably say for older children and adults x

The Life of Reilly and Pablo

Really excited! We had our home visit today by Niel from Appaws for Autism.  As you all know the crowdfunder I did was hugely successful and we raised the money in no time at all. Niel drove all the way down from Cowdenbeath in Scotland to check out our abode, I did tidy up a little bit but you know I figured if anyone understands how chaotic our house is it’s Appaws for Autism.

We talked about what happens next and that is we will go and visit Pablo in Manchester where he is with one of the best trainers.  I was astounded that these dogs actually wee and poo on command, so watch it if you are a facility that isn’t autism friendly.  I have the power 😂.

So nearly there if Reilly and Pablo are ok we should get to bring him home and start bonding before his specific training starts which for Reilly is around safety and companionship.  Autism Support Dogs act like an anchor if your child is a runner and we all know Reilly loves to run regardless of cars, buses, people etc and he terrifies me.

I learned lots about Appaws today from Niel.  They have built their own Centre which has play, teenage, crafts, conference facilities, sensory spaces etc.  They are Burns Scottish charity of the year and they have a waiting list for dogs as long as your arm so are always looking for funding, which I empathise with as myself and Kelly run our charity voluntarily and it’s so hard without good support. 

Take a look at their site for Appaws for Autism.  

Cant wait to share our first photo of Reilly and Pablo together ❤.  Watch this space. 

To blog or not to blog?

As I lay watching the man himself last night repeating the same 60 seconds of Thomas and the Afternoon Tea it brought me back to a conversation Id had a few nights before with my partners in crime Kelly and Alison.   The conversation was about whether through my blog I may be causing a source of embarrassment for Reilly in years to come.  I’d already thought about this many times and I still don’t know what the answer is.

I love that people are encouraged, feel less isolated, have become less judgemental and so forth but will Reilly, my son thank me for it when he is himself of an age to understand it all?

I like to think that Reilly will be like me happy to help others,  I am vocal about my OCD and anxiety issues simply because it helps others, alright and it helps me a little too, but that’s me.  Will he be a chip off the old block, I don’t know , can I afford to take that chance?

I’m sure the blog posts about days out and refusing to wear giraffe nappies in favour of the lions, tutting his night nights etc may be a source of amusement for him but the graphic meltdown posts, posts about smearing the walls and the fact his brother didn’t want to stay at home for a long time because of Reilly’s behaviour and sleep patterns (now resolved thank science for melatonin) I could go on and on.

He is the King in this story, his needs are first and we will stop at NOTHING to make his life as easy and as comfortable for him – am I being counter productive in writing this blog?

Would LOVE your opinions, be honest.

x

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Smearing 

I was really hoping I didn’t get any hands on experience with this one sadly that’s not to be. Lots of people aren’t familiar with the term smearing. Smearing is the word used to describe the act of spreading ones poo on walls, TVs, curtains, siblings, self etc. 
Reilly has done this over the last few days several times and I don’t like it. Not only does he smell like a sewer despite scrubbing him. We keep being treat to these pop up shop art galleries on entering certain rooms. Last night for example my oldest son Alex came downstairs and said mam I can smell poo but I can’t see it! Ghost poo? I joined the search party which was mainly centred on the bathroom, nothing. Out the bathroom moving around like a sniffer dog. Nothing. Later while sitting having a wee I see out the corner of my eye a distortion on my brown bathroom tiles, a 3D effect. Camouflage poo. Hiding amongst the grout and ceramics. Urgh. 
Today I was making a cup of tea and Reilly was watching Thomas upstairs. It’s only 2 minutes what could go wrong. Reilly taking up a plastering apprenticeship with poo that’s what. He’s like a human cement mixer. 70s artex swirls, if it were cadburys it would be beautiful, but it’s not. 

Why? 

It’s could be sensory. Lots of autistic children do this. They like the feel, the smell even. With Reilly he likes to touch it and then instead of washing his hands he’s redecorating my bathroom and MY bedroom. So today we’ve been stuck like glue. I’m hoping this passes really quickly. For now my tactics will be keep one eye on him at all times and be extra aware of cues he needs the loo, restrict access – onesie in the house fastened at the back. Spray some play doh with fart spray from joke shop? I know I’m clutching at straws.  

I’m trying to make light of an awful situation. All I’ve heard for 48 hours is urggghhhhh from different members of my household but it’s me armed with bleach spray and wipes and the smell lodged in my nostrils. Reilly on the other hand could give a ….

Driving theory test will be like a mini spa break away from this mad house. 

Day one school holidays down. Reilly 1 – Christine 0.   

Sunshine & Richard and Jaco

Yesterday I decided to just spend some quality time with Reilly letting him lead the way and seeing where it took us.  It took us to the skate park on a beautiful sunny day.  My mind was still buzzing from watching The Life of Reilly the night before so a welcome bit of time out to process it all.  The feedback we have received from autistic people, families of autistic people, teachers, SENCOs, theatre goers in general is outstanding so there WILL be more showings of The Life of Reilly and I think it could be groundbreaking for public understanding. Let’s hope so.

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I always take my camera along on sunny days and this morning I sat down to edit my photographs while watching Richard & Jaco – Life with autism.  I stopped editing photos and became engrossed after 2 minutes.  Richards fears resonated with me as a parent of an autistic child, my biggest fear is what if I die closely followed by how will he cope as an adult. I think one of my most popular posts was Grim. It still keeps me awake at night and I can’t imagine it will stop anytime soon.  Please give it a watch – education, stimming, employment, independence, fears and love.  It’s fantastic.   Richard & Jaco – Life with autism.

Love this boy and how he comes at life with this fierce yet vulnerable nature.  Not so much love for piggy back home with scooter, shopping, camera bag a bottle of pop and two chip butties ;).

#samebutdifferent

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My thoughts on The Life of Reilly play

Where do I start?  Last night was an absolute rollercoaster, The Life of Reilly play has been everything I wished for and more. I feel exhausted watching my own life (and I know many others saw themselves) unfold on stage.

I chose to sit on my own to watch the play, a wise move (Kelly probably would have brayed me for being a softy).   I have never in my life cried that much in such a short space of time and no not because I got wrong because my cameras flash went off 3 times.  I nearly pulled out the ‘do you know who I am?’ card but stopped myself just in time, i’m kidding; kind of.

It was like looking at us through a window.  It is the first time I have cried for myself, felt sorry for myself and appreciated truly how hard the last few years have been for our little family.  The character Joanne, Reilly’s mam portrayed us autism mamas brilliantly. Protective, fierce, determined and full of love. I felt for her and her struggle to be taken seriously.

Alison Stanley wrote The Life of Reilly incorporating some of my blog posts resulting in a brutally honest, true to life account of our lives.  The format was perfect just 5 characters – Reilly, his mam Joanne, dad Ged, grandma Mary and Ged’s best friend Clarkey.  Each share their own story about The Life of Reilly. 

  I AM the mother who will not apologise for her son, I AM the mother who once made a cake but is no effing Mary Berry, I AM the mother that reads, watches and learns. I AM the mother that buys beige food, I AM the mother who fears for the future.  I just am that mother.  Looking around that theatre I know that there were many others who really felt it too beacause if you are an autism parent you are that mother/father/carer too.  
Tears, laughter and an overwhelming sense of being part of something extremely special is what I walked away with tonight.

For months myself, Kelly and Alison have gathered as Alphabetically Autistic, each with our own stories about autism and a passion for changing perceptions and we are clearly on the right track.  Alison’s writing is outstanding and she has a talent that can literally make you laugh and cry in the space of 60 seconds. 

Alison Stanley, Kris Roberts, Stephen Woods, Warren Simpson and Marce Gay made for an excellent cast and I truly believe that this play will be essential in terms of the public gaining a greater understanding.  

Watch this space for more showings coming in the near future. If you would like to see the play in your area please let us know x