Sibling balance

I write this one from room 11 on the Paediatric ward at Cramlington Hospital. On Friday night Reilly’s 14 year old brother rang me to say he’d injured himself running down a hill and could I go help him as he couldn’t stand. First time out in so long!

I put my coat on and drove straight to the country park near where we live. He was quite a way up and sat on the snow. I though he’d maybe twisted his knee. We eventually got to the bottom and to the car park by pulling him on 2 sledges (Thankyou lads) . He was freezing and a little in shock I think. Took a good 15/20 mins to get him to car. Now I couldn’t get him in. He couldn’t stand.

A lovely young couple who had been walking stopped to help. They fashioned a splint and helped me get him into the car (one foot out the window) and I drove straight to A & E. I still didn’t think it was broken at this point. I can’t thank that couple enough ❤️

Some incredible staff and an X-ray later we find out he has broken off the growth plate from his shin. The part the thigh tendons attach to so your leg can move. No wonder he couldn’t move it!

Half a cast for protection we came home and adapted the living room so he could be comfortable. It’s been hard work he’s bigger than me. We came in Sunday for a CT scan which confirmed it was bad and we were promptly booked in for surgery which is where I am now. That’s the back story now here’s the bit why I’m writing here.

Ellis is 14. He looks like a man. I forget he’s still a child. Sitting waiting for his anaesthesiologist watching him nervous and trying to calm and reassure him it hits me like a bus how vulnerable and young he still is despite his persona and appearance. He just floats by in life, disappears upstairs out the way as soon as he comes home, often frustrated at my lack of time and attention. We have fights, all teens and parents do but our house is a lot more chaotic than many.

I’ve held his hand and stroked his hair through the procedures which ultimately ends up with him fast sleep. And that’s it my job for the next few hours is done. I take my gown off and my lovely blue crocs and head for some chips feeling all the dejavu of handing him over at 8 weeks old for surgery on Christmas. 14 years later and it’s the same feeling. Doesn’t matter how old they get does it.

I’m so lucky that there’s nothing seriously wrong with Ellis, kudos to parents whose life is hospital appointments for their kids because I have no idea how you do it.

So I’m waiting for him to come back like a bag of nerves thinking about how we balance Reilly and Ellis but we’ll manage, we always do. I think some changes afoot for our household for the better ❤️ love him.

Outstanding from our NHS staff in such awful times. 💙

Stir crazy

Lockdown and siblings. Not a match made in heaven in our house. Reillys super sensitive to unexpected noises. Reillys 14 year old brother plays FIFA and rants, raves and punches his desk occasionally like most teens I think. They NEED some time apart but it’s not easy.

Both of them are a bit stir crazy like most of us. This afternoons antics has resulted in an epic meltdown from Reilly. We’ve seen so many now we know what to do. A loud bang resulted in Reilly trying to hurt himself for over half an hour. Screaming, scratching, throwing himself off furniture etc. It’s heartbreaking. There’s absolutely nothing we can do other than make sure he’s safe. It will pass is my mantra.

He will even shout bye bye because he doesn’t want our interference which is hard. I’m a parent it’s what I’m made for, to give a cuddle and tell you it’s going to be ok. So we give him space, we know the trigger and try and minimise them. This means a lot of walking on eggshells and trying to be careful. Reilly doesn’t wear ear defenders at home so that’s out. We retreat to a safe distance and let him know we are there for a cuddle when he’s ready.

If he could speak I’m sure he’d say for Christ sake can you all give me a break, a hear it differently, I even feel it. But he can’t so he shows us the way he knows.

The world is so unpredictable at the minute. Routines are flipped on their head at a moments notice it must be so incredibly hard for him. We talk to each other and seek support, he just cracks on living his life of Reilly.

Can’t wait until we can see some kind of normality again. Holidays, nights away, meals out, meeting friends. God knows we all need it.

Love him.

Stay safe. If you need support contact me about our buddy system x

Covid Christmas

So I’ve been very quiet of late. If you follow the Facebook Page you will know that i’m currently recovering from COVID. For months now COVID has and still does terrifies me. I’m the lady who loses sleep at the thought of getting a cough due to Reilly’s very severe phobia of coughing. As many of you will know we aren’t allowed to be unwell but COVID has literally had me on my knees.

I suppose my biggest observation and its something that I should do more often is presume confidence. For months i’ve said to Shane what if I get it, you get it, we get it. I’ve imagined every worst scenario there is to imagine, that part comes very easily to a catastrophiser such as myself. Back to presuming competence. I didn’t think Reilly could cope with me being unwell. I have no doubt the coughing has refreshed some already big issues he had but to be honest if I had somewhere to stay he would have kicked me out in a second and cracked on as per usual without a second thought I think but he’s still cracking on getting into mischief and he has managed.

I tested positive on 22nd December, lovely timing for Christmas and schools breaking up. What started as aches and pains became debilitating headaches and exhaustion like i’ve never experienced. The night before my test I slept on our sofa as I couldn’t get up the stairs. Then came the cough. I will take any amount of suffering to myself but to know with every hint of a cough Reilly would get so horribly physically upset so I shut myself away. I looked for ways of easing it for him and plugged in the hoover beside my bed along with the hairdryer. If I felt a bout coming on I would set them away and drown out some of the harsh noise for him downstairs. He’d still hear it though.

A positive to come from the experience is that Reilly has spent a lot of time with Shane, sleeping with him, playing, fighting, watching Attenborough. I now see how horrendous it is for Shane while I am the centre of the attention most of the time, Reilly would look in the room on me and tell me Car, Go NOW and want me out the house. The 10 days isolation for the household certainly was challenging. You try and explain to Reilly why he can’t get on the X8 bus see how far you get.

Christmas day was a washout. Reilly went through his presents like a piranha and retreated straight back up the stairs and with no taste, smell or appetite dinner was a write-off. Silly me decided I would be fit for New Years Eve and that we would rearrange for then. How wrong could I be. 9th January now and I’m still exhausted. My cough is subsiding at last and I have my appetite back so on the mend but by no means fixed. Reilly hasn’t been back to school yet, to be honest I don’t have the energy to get him ready and get him there but we have decided he will go back on Monday. His sleeping is OFF! For the last week while craving sleep Reilly has put in around 3 hours per night. Now that my cough is subsiding he doesn’t leave my side and by christ its so hard.

This got me thinking. How on earth are you coping with covid and an autistic child? I am lucky in that I have my friends, buddys etc who are available to go to the shops, pick up prescriptions, there for a chat but what about those without it. I cannot begin to imagine. I’m struggling. Thank god if Reilly did have it he wasn’t ill like I was. Everyday we have done the do you feel sore encouraging him to point and make us aware if there was something off.

If you need someone to talk to, help with shopping, appointments etc please get in tough about our buddy system via the facebook page. We have people who are already helping those in need and we have room to help more. My mental health has taken as much of a beasting as my physical health, its so important we try and keep it all in check.

So back to school on Monday. I’ve seen a lot of conflicting views on SEND schools and parents being deemed as irresponsible for sending their kids in. PLEASE don’t judge. Every single one of our kids are different and they all have their own needs which as parents we will go to the ends of the earth to fulfill.

Back to recovering and can’t wait to have a few hours alone next week to just breathe and sleep.

Lots of love and a healthy New Year to you all xx

How quickly things change.

After an incredible few days away at the autism friendly caravan we’ve come crashing back down to earth. An awful week. One that has certainly tested us. I’ve cried too much and my mental health has taken a pounding.

Reilly has been off school pretty much since the beginning of March, he returned for a couple of week after the holidays but was short lived when he had to go back off to isolate for 2 weeks. Getting Reilly back into school this time has proved the hardest yet. I cant sleep worrying about how he’ll be in the morning. We’ve even taken him in pyjamas as he gets into so much distress getting ready in the mornings. On Wednesday morning I just cried I felt so hopeless. Shane had to drive and I had to try and keep him safe, guarding the handbrake. He hurts himself, sometimes really badly and it literally breaks our hearts. We pulled the car onto the drive when we returned and just sat there “are you ok?” Shane said. One look at me told him I wasn’t. He put an arm around my shoulder and we just sat in silence. The worst day we’ve had to date but it actually spurred us on to chase some services. Shane contacted social workers, front door service, made lists of things we need help with – I won’t publish it but it makes for heartbreaking reading. For the longest time I’ve just said we’re ok, we’re doing it but we’ve reached a point where I can actually say we need some help over here.

I honestly couldn’t do Wednesday it was just too much. I am so lucky that I have friends who get it. They were shocked themselves to read our help list. I have other parents who get it on hand to talk. What about those who don’t have that?. Those who are single parents/carers/grandparents who don’t have that understanding ear it when this whole COVID thing subsides someone to go for a coffee with. I’ve got that should I need it. I NEED to talk when things aren’t going well but not to just anyone. There is nothing more soul destroying than pouring your heart out to someone, who through no fault of their own haven’t a clue. Sometimes you need that deadpan honesty, empathy and often humour that can only be given by those who truly know. While feeling like this I thought it was time to talk to you all about the new service Life of Reilly is working on. Buddies. We need volunteers who get it. Someone you can call, text, ring, Skype, meet when you need it most. Of course buddies will he matched too. They’ll be checked and receive some training. Community buds is in early planning and we would look to provide people, age appropriate to allow some respite in terms of accompanying a young adult to the cinema etc enabling parents a couple of hours break or someone to help you with an appointment or shopping. Peer to peer support is proven to work. With services stretched and waiting lists long it’s time to get proactive. I’ll update you all soon.

For now I’m trying to kick in some self care and follow advice given by my peers. Thankyou to those who have helped us this last week.

Love this kid. We find it hard, he finds it so much harder. He’s incredible. We got you Reilly xx

CBeebies Land and Hotel at Alton Towers

Throughout lockdown Reilly has googled CBeebies Hotel numerous times daily. I would sit with him watching reviews of the hotel on Youtube and he’d show me the numbers of the rooms he wanted to stay in. Because we have literally done nothing for the lat few months we decided we would book 1 night as a treat.

CBeebies Hotel is located at Alton Towers so a good 3.5 hour drive for us in Newcastle. When given the right motivation Reilly is great in the car so that didn’t worry us too much so we logged on to book his favourite room, a room that would truly submerse you in all ‘In the night garden’ has to offer. Not exactly what I would choose but for little ones (or not so little ones in Reilly’s case) its great . For me personally it’s too expensive. A suite costs £348 per night thats without park tickets. The room we went for was £248 per night. I would expect to pay that for a 5 star spa break! but this was Reilly’s treat and I begrudgingly booked it because he had his heart set on it. You can get a cheaper room for £188 which is nice and bright if you are desperate to stay at that hotel.

When booking I informed them that Reilly was autistic, this entitles you to a free carers pass for the park. It cost us £70 for 2 adults and a child for 2 days. We got our tickets from the reception desk at the hotel. If anyone from Cbeebies/Alton Towers reads this please consider issuing the carers wristband at the same time. It will make life so much easier as you have to queue inside the park at the box office to obtain the carers wristband. To truly make it smoother this would solve a headache for families and carers.

The hotel is so bright and colourful, the COVID arrangements were really good and it felt really safe. There is entertainment on in the hotel and a screen in reception tells you when certain characters will take to the little stage area. Next door is the Alton Towers Hotel and then Splash Landings with its waterpark. The adventure golf course is here too so all very close. Our hotel stay included a round of golf but we couldn’t get Reilly to go much to our disappointment. The Star Gazing pods are also near the hotel. Like little huts I should imagine great in the summer if you plan on being in the park the whole day.

Reillys face was an absolute picture when he saw our room. He immediately put his pyjamas on and settled in the top bunk of Iggle Piggles boat. It took us a good hour to try and talk him round into venturing out and into the park. Reilly’s understanding of social distancing is zero. The one family in the lift at a time was troublesome as when the lift arrives that’s fair game to Reilly. He doesn’t care who is in it or whether its going up, down or sideways. So this did prompt some spectacular star fish moments while we waited for the lift to return. There’s a little shop in reception selling cbeebies merch and some important things like chocolate and icecreams etc. We were booked into The Windmill restaurant at 7.30pm and got a chance to have a peek when Reilly gave us the slip and legged it through set up in the restaurant. Very bright and colourful again like the rest of the hotel.

It was pouring down when we arrived but as Reilly loves the rain and we weren’t bothered we headed to the park. CBeebies land is situated right beside the entrance to Alton Towers so not far to walk if you are parked in the express parking (issued by hotel). Main parking with COVID restrictions is a good 10 minute walk. The Park had temperature checks on entering and there were hand sanitisers and markers for distance throughout.

I’ve watched so many youtube videos of late I knew exactly what was in there and I did expect Reilly to have a bash at most things. I wasn’t prepared for him going on Iggle Piggles boat ride once then asking to go back to the hotel. We think may be he was scared we weren’t going back there and was probably anxious. After much coaxing and failed bribery attempts we made our way back. Such a shame as there are some cute things in there. Postman Pats Van ride, Octonauts rollercoaster, Go Jetters Planes, Live performaces, Tree Foo Toms monorail and others.

Back at the hotel it became a game of cat and mouse. Reilly wanted to be in the other rooms to have a look regardless who was in them. He was tall enough to take the chain off the door and we had to be onguard when in the room. We made our way down to the restaurant for our tea and quickly discovered that Reilly wouldn’t be sitting in there. The staff were great and organised everything for us up in the room. Food was absolutely delicious and not what I expected.

It was 12am before Reilly started to show signs of maybe falling asleep. We started off with me in the bottom bunk, Reilly in the top and Shane in the double bed. After 15,000 trips up and down the ladder from Reilly we swapped about and I took the double bed with Reilly and Shane squashed into the bottom bunk. Reilly actually slept!

Reilly definately did not want to leave. He even offered to get in the bath as a way to stall leaving. Again he wouldn’t go in the dining room so Shane went and got takeout from the restaurant and we ate in the room. Breakfast was great no complaints about the food at all.

After much screaming etc we packed up our stuff and did manage to get him in the car and we parked at the entrance to Alton Towers. A sunnier day means more people, there were droves of people making their way to the entrance from the main car park. For us it was like groundhog day. Reilly went to the same ride only to find a big queue. There was no queue the day before so we hadn’t collected our wristband to access via the disability queue. I sharp legged it back around to the box offices to obtain it. While I was gone Reilly had been up to his usual antics. He just doesnt queue. We try and show him it just doesnt register. He wants to be first, this isnt something new. He’s 9 now and he did stand out. The rest of the littleys in the queue were excited for Iggle Piggles boat too, I get that but some of the parents, the looks, the judgement. WTF do you think you are? We are wearing our sunflower lanyard, you know this isn’t typical so would it kill you to just turn the other way?

When I returned with the wristband and Shane brought Reilly out of the queue to the side entrance I heard tuts. I saw the eye rolls. I even sensed jealousy. Jealousy? because we put you back 2 minutes on a ride. You want to walk in our shoes? Follow me and I’ll kick mine off for you and you can use my fast pass lets see how you enjoy your day. It put me in a strange mood. I hate people sometimes. We are doing our absolute best. Why shouldn’t Reilly get to enjoy the same as other kids? Yes he’s 9 and on a ride with 3 year olds. He could be 15 or 25 and doesn’t need your judgement.

We tried our best to have a walk around and see the big roller coasters etc in Alton Towers but Reilly was having none of it and we admitted defeat and set about the big drive home.

Haggerston Castle with Spectrum Holidays

Last weekend we visited the Autism friendly caravan at Haggerston Castle through Spectrum Holidays.

The whole experience was made so much easier for us through the detail that Sophia and Malcolm put into making sure you are well prepared. We were sent our own personalised countdown to holiday chart and social stories prior to our stay. I used these daily on the run up to our arrival. Reilly knee he could plan packing his little case and he was familiar with his new surroundings. Super helpful.

We were given a choice of theming for bedrooms. Reilly chose Toy Story and Lego. Two of his faves.

The caravan is located near the Fairways Golf /adventure golf. Far enough away from the main hustle of the clubhouse etc but an easy 5 minute walk past the lake. It’s on a corner with lots of surrounding grass and a small park. Less than a minute away behind the caravan is a larger park with zip line etc.

The caravan has 3 bedrooms, 2 twins and a lovely double with en-suite toilet. Every room has TV/DVDs and consoles (I asked for consoles to be removed prior to our arrival as Reilly is a bad tempered bugger and rages when he doesn’t win). The lounge also has a pullout sofa bed so plenty of room.

It has everything you could need. Sanitizer outside the caravan and inside with cleaning products in abundance.

The first thing I saw when we entered was box on the table, a Spectrum Pack which contained lots of sensory and helpful items and also full pecs boards and sets. Priceless. Planning and visuals are king for our families and these made mine time a whole lot easier.

There is also a sensory wall with bubble lights, fibre optic rope etc with remotes to change colours. A lovely addition and something Reilly really enjoyed experimenting with. Underneath the two seater sofa there is a toy box filled with all kinds to help keep them amused.

The living room has a large TV with Sky and fire stick and the wi-fi is excellent! The french doors lead into an enclosed (for the runners) deck with seating area.

Reilly as per usual was very keen to check out the onsite chippy. We wandered up past the boats and Reilly had a mini meltdown because they weren’t open yet. A couple of karate kicks at the gates and I managed to carpet carry him away.

Now in a time when covid has everyone feeling uneasy I must admit the social distancing was good on site. The really well equipped shop had someone on the door counting people in. Shop also had FreeFrom range which was a welcome blessing for me!

There is a Burger King much to Reilly’s delight as he hadn’t had one since March, a Papa Johns and the sites restaurant in the main complex. Both offering a delivery to your caravan or click and collect. You can book a table at the restaurant or Tower Bar too. All done easily through the Haven app. There’s an owners lounge and Fairways cafe too.

Local restaurants will also deliver. Asda will deliver your shopping to the caravan too so no need to pack the car to the rafters.

The amusement arcade had social distance measures in place with every other machine turned off.

On the Saturday the boating lake, karts and land train were up and running. The 3 lads Alex, Tom and Dylan saved my bacon by allowing Reilly on at a point after it was closed. A quick explanation of Reilly’s extreme reaction and they were happy to help.

I drove into Spittal 10 mins down the road for a bit of nostalgia. We holidayed there when I was little and I’ve many fond memories of my brother Neil there. If you fancy a beach day that’s there too.

All in all we did have a great time, the caravan cannot be faulted and I thoroughly recommend the first class service Spectrum Holidays gave us. They themselves have an autistic child so they get it. They know what is important to us as families.

As the site opens up with the ease of lockdown the enormous pool, entertainment, golf, mini golf, soft play, Spa, woodland ariel activity course, animals etc will make for a brilliant break. Busy or relaxed you can have either. Every member of staff I talked to were great. Special mention for the young lady with the pink hair who offered so much help.

Reilly was typical Reilly home or away and there is never a dull moment! He took the pool being closed remarkably well to my huge surprise 😂 I stood shaking in my boots expecting an uproar while he peered through the window but managed to lure him away with promise of a DVD from the shop and a kinder egg.

Photo credit: Haven

True to form Woody and Buzz somehow made it to the boot of my car which I found while unpacking so I’ll need to send them in an adventure back up North 😂.

Huge thankyou to Sophia, Malcolm and Luca. You’ve done a great job and wish you every success. Xx

For more info and booking https://www.spectrum-holidays.com/accommodation/haggerston-caravan-new/

My house is not like your house

Where to even begin. We’ve been in that long I’m not sure which week it is maybe 8 or 9. I’ve not updated much lately as to be quite honest I’m exhausted – mentally, physically, emotionally. There’s not much left to give.

This isn’t a blog to gain sympathy because be in no doubt my struggles are multiplied ten fold for Reilly. He may not be worry what the latest Covid-19 stats are but he is fuelled by gut wrenching anxiety every single day. An anxiety that will see him self harm in numerous different ways to attempt to control it and my heart breaks for him.

This morning I buckled under pressure and cried. Not done it in ages. Weeks of sleep deprivation and stress have taken their toll. Any support I had to make daily life manageable gone in a heartbeat. 24/7 hypervigilance in its place.

Initially the break from his normal school life was a welcome one for Reilly once he was over his illness. Seeing no school on his calendar for weeks ahead is probably like seeing Christmas everyday for him. He became more relaxed and more vocal. As we skip forward a few weeks I see a different little boy and I’m at a loss how to help him.

I feel like I’m on a hamster wheel, a road to nowhere, sinking ship or any other example you’d like to throw in there. My OCD is raging. Everything we are taught about OCD tells us to challenge the fear. If it’s germs touch it, if it’s heights climb it and so on. To be in such worrying times when those practices aren’t practical it becomes very difficult to handle.

My six week long headache is now normality and it takes everything in me to muster the energy to go round in the eternal circles of destruction in my home daily. Destruction to me, probably artwork to Reilly with his impromptu painting of anything, fort building, recycling chaos that he thrives on.

We’ve managed one beach trip and he signed home the whole time. He’s happiest scratting about in our recycle bins. Once the door is locked for the night he creates piles for the next morning emptying bottles, packets, removing labels from tins and places them at the front door. I’ve seen him on many occasions searching for keys at 3am to move the bin an inch to the right after watching it out the window and growing more anxious.

I turn my washer on, he turns it off . Is it the noise? Who knows. But I feel like I am achieving nothing but that’s not right I’m achieving far more than I realise. As parents we are going beyond anything we thought we could achieve. There’s no bike rides, picnics, sleeping, movie nights, art classes, puppet making for us. Just survival one day to the next and it’s hard!

I had my wobble this morning. I messaged the girls and said you know what I’m not ok. That in itself is a huge step instead of we’re fine, it’s fine and in return I received support and reminders that I can do this.

I miss Alex still living at his Dads and let’s not forget another teen here who has also been isolated for as many weeks with no respite from any of us which can often be harder work than any of the above.

Difficult times for the kids and us. Try not to judge us we need all the help and support we can get ❤️

COVID-19

Snappy title eh!

Standing at our upstairs window tonight clapping for our front line workers made me feel so emotional. I’ve felt pretty numb over the last couple of weeks. Had moments in everyday of sheer panic. Heart pounding, shakey legged panic, not sleeping and pins and needles from head to toe. I remind myself it’s normal to feel this anxious and to question Where’s this going, how many will die. Will the world ever recover from it? I’ve used meditation, grounding techniques and distraction such as games on my phone and reading.

Reilly is blissfully unaware, as he should be. His brother Ellis had a conversation with me yesterday I asked if he was worried his answer was not for himself but for family at risk yes he was scared. Alex flew in from Japan in the middle of our isolation period and I haven’t seen him yet. This breaks my heart but it was sensible and necessary.

Reilly started 2 weeks ago with a sore throat, 2 days later a temperature of 39.1 and a cough. No sneezing, no runny nose and no energy. Did he have it? Who knows. But we took the precautions regardless. I have health OCD. I constantly look for reassurance that I’m not ill. So times are testing. My heart bleeds for those stuck in that loop of intrusive, checking and washing.

I was filled with dread at the thought of him being at home out of routine and as the days went on and the carnage at supermarkets started to unravel it became all too real. He only eats a handful of foods. If those foods aren’t available he’d go without. One quick Facebook post resulted in 10 margarita pizzas and 4 loaves of bread within a couple of hours!

He has loved not having to get dressed and I’ve seen a much more relaxed Reilly. We’ve had moments I’m sure you understand where he’s showed me on his iPad he wants to go to cinema or trampolining and I’ve done my best to distract but all in all he’s been great. I’ve watched the same 40 seconds of Dinos and Discoveries hundreds of times but if he’s happy I’ll take that – I’m not upsetting the apple cart right now.

The posts I see on social media make my blood run cold. You know the ones that say remember if your child catches it they must go in an ambulance alone. You know that one. I keep playing it over in my mind. We aren’t at that level of non verbal communication. I can’t do this. The thought makes me physically sick. Imagine trying to fathom that one.

So 2 weeks of indoors has seen me browse a fair bit of social media. It has brought to the forefront the worst of humanity and on the other hand some of the best. I’ve seen stupidity that I never thought was possible. Lack of regard for others and for life in general has been abundant. I’ve screamed at my phone at videos of covidiots ramming into supermarkets and stock piling god knows what and just not taking it seriously.

I’ve made a conscious decision to try and just keep me and mine in order. I can’t control the rest. I’m worried about money, mortgages and jobs like everyone else, I worry about friends and family so I look for humour wherever I can. For now I’m trying to be positive. Decorating with the paint that’s been there 6 months and writing, sorting accounts, making artwork etc in preparation of normality whenever that may be.

Stay safe. Stay in. Call people out on shitty behaviour. Help others and keep the faith ❤️

Thankyou to all the people out there working and supporting others.

Remarkable!

Yesterday I had the absolute pleasure of attending the Sunshine Funds Glass Slipper awards at the Hilton Hotel in Gateshead. I’d been nominated under the category Remarkable Woman which is incredible! I love everything North East and we all know I love to see women succeeding and being honoured. The Life of Reilly isn’t just a blog, a play, a film as many may think. It is a movement. A movement that needs louder voices and more feet on the floor and we will forever shout it.

The Life of Reilly is peer to peer support, it is mental health improvement and counselling, it’s education, it’s comradeship, it’s fierce advocacy and most of all it is essential.

The blog for me as I have always said is a cathartic. Sometimes I need to write. Sometimes I need other people to say us too, me too, I hear you, I got you. I haven’t written as often as I’d like recently because sometimes I’m struggling too.

I am surrounded by and work with remarkable women all the time, that’s not just those who work in the industry and support our kids, that’s those who are keeping their heads just above the water, treading water is exhausting, functioning is sometimes exhausting yet here we are because there is no greater drive than our exceptional children.

I am truly grateful to anyone who nominated me and to those who deemed me a winner, the room was packed with winners. Thankyou to Lynn and the staff at Hilton for their brilliant hosting, to Dr Joanna Berry whom I fangirl all of the time for her talk on kindness, to Lowes Financial for sponsoring my category and to Siobhan and the Sunshine Fund themselves for holding such an inspiring event.

Here’s to the growth of The Life of Reilly, to change and to my partners Kelly & Alison. I look forward to keeping my circle of remarkable women close.

As always I celebrated my win with a nice pot of tea. Shout out to the men too 🙂 x

10 Reasons to come see the life of reilly

Don’t just take my word for it. There are hundreds who will back up my claim that this play is groundbreaking. A must see for everyone!

1

A thought provoking, funny, emotional, educational and honest insight into real family life with autism. I laughed and I cried, I listened and I learnt. This is a must see for all, highly recommended.

2

This is not a play aimed at parents of autistic children. This is not a play highlighting the concerns, traumas, battles and challenges they face on a daily basis. This is not a play that makes you realise you’re not the only one serving up beige food. This is a play for the whole of society. A play that will make you realise that autistic people are the same as everyone else, just different. This is a play that will make you belly laugh, a play that will make you weep, a play that will make you realise how intolerant our society has become. This is a play that you must see, watch it with open eyes, an open heart and above all an open mind.

3

Watching similarities of your own personal story being played out in front of you with such honesty and rawness made this play unforgettable. The humour and simplicity of what parents face on a daily basis was demonstrated throughout and it gave a magnificent insight into the wonderful world of Autism. Great for raising awareness and showing the reality of what happens behind closed doors xx a must see x

4

A must see for everyone! Such an in-depth insight into the world of autism from point of diagnosis to dealing with the daily struggles of meltdowns and routines not to mention the completely unhelpful opinions of people on the outside! The play is an emotional but accurate account highlighting the need for acceptance and empathy. Absolutely incredible and really keeps you gripped from start to finish. Well done to the writers and cast, I cannot wait to see the film! 💙

5

Incredible performance last night by all the cast. My son Fletcher has ASD and we can completely relate to the issues raised in the play. I only wish all my friends and family could have been there to see how incredibly hard it is for children and young people with ASD and their families. The fight continues #understanding #support

6

This play pulls no punches in telling how Autism impacts on everyday life for all concerned. The joys…..of which there are many the heartache, the frustration, the lack of understanding, the struggle for services….I don’t know how they achieved to convey all of this with humour, pathos and sensitivity. I would recommend this play to everyone. I’ll be going to see it again.

7

Spellbinding. Better than The Curious Incident of The Dog

8

What can I say? As a step-Mum of a boy with Asperger’s, this play had me weeping both with its raw honesty and its humour. It’s a must see production… but bring a tissue! Well done to all, it’s so rare to see such an accurate portrayal of life for a family on the spectrum.

9

I absolutely loved this! They represented the autistic spectrum with dignity, and humour, whilst showing the challenges of living in a world that insists on conformity.

10

This was a such a powerful story, I know people dealing with similar realities and their description matched the journey I was taken into by this amazing project. Very strong collaboration and performances too. This deserves to be watched and shared!

Next show is 7th Feb at Northen Stage tickets available here