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

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 ❤️


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.


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!


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.


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.


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


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! 💙


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


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.


Spellbinding. Better than The Curious Incident of The Dog


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.


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.


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

2019 Good Riddance – A Dad’s blog.

It’s been quite some time since my last blog, so long I can’t remember the last time I wrote one to be honest; quite a lot has happened in Reilly’s life, development and this has changed the dynamics of the house somewhat and had a profound effect on us all as a family.

The first 6 months of the year seemed to pass without too much incident in the grand scheme of things from Reilly’s point of view (I think), our boy rolled with his routine, he settled into his Monday to Friday routine of going in his school transport without too much issue, developed academically very well, he’s by all accounts a helpful, keen student even taking it on himself to collect the class register and participate in running 1 mile a day with few of his class mates and his teacher.

After school in the lighter nights Reilly is keen on playing out in the street, going swimming, going to Air box trampoline park, the Cinema (we tried numerous times but it’s just too overwhelming for him and he is off before the movie starts), Weetslade country park; Fridays are different we always get the bus, same X8, has to be a double decker so he can sit up stairs and get a good vantage point on his journey, straight off the bus at the Haymarket and into Greggs for a sprinkled donought and a bottle of Dr Pepper light then through M and S up the glass lift and depending on his mood its Fenwick’s toy department or HMV or both.

After shopping it’s like clockwork off to Subway for a Bacon sandwich and pop sitting in the front window watching the Buses pulling out of the station.

So good so far right?

During this period of relative stability as I have mentioned in previous posts I have wrote ordinary life goes on, bills have to be paid, work commitments have to be fulfilled, cars will still break down; even in times of really unsettled behaviours unfortunately the same applies.

The first 6 months of 2019 were tough for many reasons personally, like most in modern life we are spinning numerous plates and modern life is stressful enough and parents often neglect self-care; too busy earning money to pay the dreaded bills, keep the car on the road, the roof over the head, rushing between kids activities, probably sounds very familiar to most I would imagine.

I will try to explain the gradual decline that spiralled out of control that with self-care I could of I am sure handled it better, the problem is if you’re in a lifestyle that doesn’t include regular self-care you like me probably won’t see the signs of what is coming and you dig in and think it will pass.

Towards the end of 2018 we lost a dear friend, a really kind soul Glenn who suffered like myself with mental health issues; in January we lost another dear friend Eddie to cancer after a short period of diagnosis, both fine young men were far younger than myself and should have had the world at their feet and deserved to live full and happy lives.

At this point I am seriously considering morality, Reilly’s complexities potentially may or may not need to rely on a support network as he moves into adulthood; we have little in way of support as parents get older, health declines and he’s an energetic bundle as he should be as a young lad. The first thoughts of what happens if it’s me next creep into my head, who will look after him? Who can he rely on? At this point it’s a daily thought and I try to rationalise with myself that’s not going to happen everything will be ok…..

A short period of time later I lost another friend, Gavin the word character could have been invented for him; Gavin was slightly older and like myself a father and like Glenn and Eddie he should have had years life and happiness ahead of him.

Watching the pain, anguish and struggle of bereaved parents is unbearable; I know what they are going through the fights they face and as kind as peoples intentions are bar odd chinks of normality nothing stops the living hell of how final it is. I know because I am a bereaved parent.

The rationalising with myself is now becoming more frequent and my worries are becoming more and more real in my own mind….

Still trying to hold myself together the crushing news comes in a phone call my friend Anthony is in hospital, diagnosis pancreatic cancer; kind, funny, principled, slightly younger than myself and also a father.

Again the first thoughts are this is shit, just wrong, a very fit young man, regular half marathon runner, he should have his life, a long happy life. The battle in my head is now all consuming in fact its lost, well and truly lost at this point. I make an appointment to see my GP and continue as best as I can to function at work and as a parent.

Getting back to Reilly, at this time my head is a mess, I spend time with him and all I can think of is what will become of him, will he need support, will he have a career and who will care for him, protect him and support him? The day before I was at the GP’s I attended a concert at his school and all I could do was cry, not out of pride but fear, real fear for his future.

I left that concert and went home with stomach cramps, never slept and rang in sick the next morning, went to the GP’s unloaded on him and was as honest as I could be, top tip to any men if you don’t be honest you can’t get the correct help. I will be forever grateful to the GP and my friends who recognised the signs and offered unconditional help and support.

The severity of the cramps had been on and off for periods of months and In my lost battle in my thoughts I was terminally ill, the GP took what seemed like a dozen samples and reassured me it was stress related and proscribed a new course of anti-depressants, diazepam and signed me off work for 3 weeks.  Work were supportive thankfully, the next few weeks existed of wondering around the house and waiting for the kids to come in to have a sense of purpose.

Fast forward 2 weeks and results day at the GPs, I was physically sick before I went I was that convinced I was seriously ill. The GP got straight to the point and advised me I had neglected my own care in short, was suffering with stress/depression related illness and I was type 2 diabetic undiagnosed for considerable time. I have never been so relieved in my life as a result I have had to alter my lifestyle, take the medication, slowly build up my mental health and taking enjoyment out of my life and being a parent. I returned to work after 6 weeks and have nothing but praise for the way I was supported and treated since, it’s easy sometimes to forget who helped you when you needed it, but remember you should and repay them and stay loyal to them in the future.

Anthony was a dear friend and comrade, whether it was that daft message, a phone call, quick pint, a music session or a day out to the football there was never a dull moment.  His battle and outlook on life will stay with me forever, so brave and dignified.

My outlook on the future is still very much a case of uncertainty, I still question my morality and the what ifs creep in but I can shut them out and replace them with positive thoughts and behaviours; the truth is even neurotypical kid’s parents will have worries of their kids futures but unfortunately it’s not a level playing field with a child or a young adult with ASD is it?

For any readers who aren’t familiar with me I am very opposed to the current government and their savage cuts on social care, the NHS, education and the welfare state; I will openly challenge people in person or on any platform available. I make no apologies and stand by position, an example is £0 yes £0 extra funding for SEN schools from 2023, the current lot don’t want to educate my child never mind care for him if god forbid the what ifs ever became reality.

So when you think here he goes again banging on about Labour or Socialism or the likes you now have a deeper understanding of what makes me and my wife tick, I like you want an equal, fair and accepting society for my kid as you do yours; I don’t expect special treatment just a level playing field it’s not too much to ask. What isn’t ok is 1000’s of kids and families struggling out of education, unsupported, confused and suicidal in a world they don’t understand, parents struggling relying on charities and kindness as the magic money tree doesn’t stretch to our kids.

Recent political goings on don’t fill me with long term confidence so we have options to consider what is in our best interests as a family, for Reilly individually and what can we do to remove uncertainties and improve the outlook for families, ASD kids and as importantly young adults.

If we don’t take the lead who will? No one is my guess, bar our own community bubble of teachers, parents, families we are very much on our own in my opinion.

Ps. the second 6 months were an absolute disaster in terms of Reilly and his behaviours bless him but that’s another blog.

Finding the calm in chaos

I like to think I hold it together pretty well ordinarily. I’ve functioned on little sleep for years now and appreciate it more than you know when I clock up more than 5 hours. I decided to write this post because in the last couple of weeks I’ve really not felt myself at all and I know we can all feel like that so thought I would share, sharing’s caring and all that.

I’ve never made a secret that I rely on my anti-depressants to function. There is no shame in that. Considering that lack of sleep massively affects mood and anxiety is it any wonder. At the moment I am anxious about everything. Reilly is incredibly clingy for me, more so than usual. He doesn’t want to go to school, wont get in his transport and has spent every morning this week hiding uniform and trying to flush his shoes. He google images NO School, yet he loves it when he gets there and he shows me on the laptop and makes the letters DVD by contorting his fingers to spell it out. Can I blame him? Hell no. I’d rather stay in bed too, snuggling but sadly I just can’t and neither can he.

In these moments when he is pained to be separated it really hits home about his future. This drives further anxiety and the cycle continues. I have plenty of time to think about it. While he listens to the same 30 seconds of Peppa Pig at the Museum on repeat while turning the light on and off I think about it. His current melatonin is much to blame (just changed) it’s useless, which is something I will address properly with GP etc. I can GUARANTEE the cost of Reilly’s lack of sleep will cost the authorities more in the long run.

I’m missing important meetings and it makes me wonder is it time to stop and just be Reilly’s Mam for a bit. Full focus. Truth is I find that very daunting. I’m not a domestic goddess, I don’t thrive on a tidy home with kids lunchboxes neatly packed with healthy snacks. Not me never has been. Even if I had the time I probably wouldn’t do it. What I do have is patience by the bucket load but recently I think theres a hole in my bucket. My laidback manner is on edge and tetchy and I don’t like it. I’ve pulled out the big guns this week with a text from Santa and a xmas tree removal for gods sake. It’s not his fault. What I am angry at is me losing my grip on keeping it all together.

My work life has been incredibly busy. Life of Reilly has performed twice this week, the film is coming on an absolute treat and we inch closer to our hearts with goals charity ball next Sunday. Thank god my partners in crime Kelly and Alison are helping me where normally they wouldn’t need to. Another week or so and I can maybe breathe again.

This isn’t a woe is me post. I’ve kicked my own arse and pulled my own socks up a million times this week, its a plea for understanding. If I scurry past you in the shops its because i’m not in the place for chit chat, if I glance away when I do talk to you my mind is probably somewhere else, if your message sits unopened in my messenger know it’s not through malice.

I look forward to a cheerier blog post next week and in the meantime i’m ok with the fact that sometimes i’m not ok and you are not alone if you are feeling the same way. I’ve hard a hard week. Next week is something entirely new. Self care, priorities,being kinder to myself and less procrastination order of the day. xx