From the other side

I recently asked my friend Dave if he would be interested in writing a guest blog for The Life of Reilly. He’s always been fascinated by Reilly, I’ve watched them bake, prepare food,set up tracks together and Dave is always looking for new ways to communicate and engage with him. I have never considered the other side. The guilt others can feel when they see their own friends struggling. This blog has had me in tears. ❤️

Being a parent can be tough. We can all agree to that. There are times of great joy and pride, especially in the early years when they begin walking, talking and doing all the funny things toddlers do. Even the ‘terrible twos’ and ‘awful fours’ didn’t detract from it too much for me. I was just revelling in being able to have simple conversations with my little boy and other than the regular tantrums he was generally really nice to be around.

The other end of the scale, of course, is the teenager. Where they talk to you in grunts and go all moody for the slightest reason. I can deal with that, as foster carers we’ve been dealing with moody teens for 20 years. You have a spat, go your separate ways and still end up having a decent conversation with them later… if you’re lucky.

The bit in between this is the most frustrating. The 5 to 10 year old phase. The bit where just the sound of their voice saying ‘Maaam!’ Or ‘Daaad!’ for the thousandth time that morning grates on you so much you keep thinking ‘Jesus Christ I wish he’d just shut up’

It’s more than that of course. It’s the communication itself that winds you up. The incessant whingeing, demanding, trying to get each other into trouble, being awkward, the backchatting… the list goes on…

I don’t mind admitting that quite often I’ve wished that, even just for just one day, he would just stop speaking.

But then… I’m the father of a neuro typical child and when he is quiet, I can enjoy that silence, knowing that he’ll be bending my ear again in a little while.

The amazing family at the heart of this blog have been there from the beginning. Clare, my wife, and Christine were pregnant at the same time and we worked together before and after the boys were both born. We socialised and holidayed as families and watched them grow and develop together… until they didn’t.

With heavy hearts we watched this family go through the realisation process and diagnosis of Autism for their son and with a sense of guilt, we watched our boy develop rapidly whilst Reilly just… didn’t.

Watching Reilly’s autism take shape was heartbreaking. His melt downs and challenging behaviours were one thing but the fact he is non verbal is the thing that has always affected me deeply. Watching him and his parents not being able to communicate is what makes me give my head a wobble when I get frustrated about the incessant kids voices around me. I know that Christine and Shane would give anything to have Reilly shout Mam or Dad just once never mind a hundred times. To have a simple conversation about what he wants for tea or where he wants to go but most importantly, to be able to ask him what is wrong when he gets upset.

In recent years things have changed. We moved out of the area and our working lives have gone in different directions which means we don’t get anywhere near the time together that we did or that we’d like but it does happen and it’s always a joy to have them around.

I’ve never found being with Reilly difficult. He’s different that’s all. Challenging at times but it’s never disturbed or frightened me. It’s never dissuaded me from trying to interact with him on the most meaningful level I can. I try every time I’m with him and mostly he seems to ignore me… and that’s ok.

Recently though, it’s been different. We know that he’s beginning to communicate in a multitude of different ways and every little win makes my heart swell for them…

Out of the blue last week, Reilly asked to come and see us and as always it was nice to have them here but what happened that day just blew me away.

Reilly went to our kitchen and I went with him as usual, just to see he’s ok and try to gauge what he might be after. He opened our food cupboard and our conversation went as follows.

Are you hungry?

Reilly made the sign for Please/Yes

Ok… what would you like?

He went to the other bench and tapped the bread. Now I know Reilly loves toast so…

Do you want some toast?

“Yes”

What would you like on it?

He opened the cupboard and pointed to the Nutella.

Ok, toast with Nutella?

“Yes”

I was already amazed but I wanted to see how far I could take this with him. He went to the table and took a seat.

Do you want thick bread Reilly?

“No” …spoken, not signed

Would you like butter on?

“No”

So I made him his toast and, after confirming with Christine on his current preference for shape and construction, I put it down to him.

He signed “thank you” and our conversation was done and I’ve never felt so overjoyed to talk to someone, to communicate, even on a simple level with someone I thought I might never be able to. This was a full blown conversation too. Question and answer, conclusion reached and he was happy.

I, however, was over the bloody moon.

We take communicating with our children for granted. We get frustrated at it at times but I never seriously wish my son would stop speaking… I know how hard it must be and I wouldn’t wish it on anyone.

Lessons

Today has taught me many things.

  • I’ll never go on holiday in a hotel with Reilly as long as I live.
  • I know what every floor in Hilton Gateshead looks like.
  • I know what every lift in Hilton looks like.
  • I know what every toilet in Hilton looks like.
  • For the amount of running I do I should be skinny.
  • I have shouted “don’t you go near Robs car” on more occasions than I care to mention.
  • My middle child Ellis is growing up too fast. First razor bought today.
  • That there are a lot of people who will let you down and disappoint you.
  • There are a lot of people who will cheer and champion you regardless.
  • That gluten free/dairy free pizza from dominos is not a replacement for an original Americano.
  • That mental health is more important than anything. ANYTHING.

Was fantastic to take Reilly to Brooke’s (Ellie in The Life of Reilly) party tonight. We stayed way longer than I thought we would he thoroughly enjoyed himself. I didn’t sit down once and must have looked like Flash Gordon in my yellow jacket trying to stop Reilly moving lights, knocking over fountains, getting in fountains.

We had to split as always Shane/Ellis to footy presentation and Me/Reilly to party. I’ve stressed non stop all day about taking him but so pleased I did.

The young girls at the party were so courteous. Standing in queues distresses him. They would let him in first little things make a huge difference.

Big shout to the IceCream Man. Interacting with Reilly like an absolute star. Love it when people make an effort with him.

All in all a great time, thoroughly exhausting but he loved it ❤️. Thankyou to everyone.

12 years

12 years ago after the birth of my second son I had a breakdown. It was the worst experience of my life. I had severe post natal depression and peri-natal OCD. Peri-natal OCD is possibly the cruelest form of a mental health problem I’ve come across. This isn’t lining baby bottles up or being tidy. This is trying to make a bottle and convince yourself that you haven’t filled it with salt (obvs haven’t but you check, you check again, one more check, you throw away – just in case, you start again). It’s exhausting. You have this teeny human to care for and all you can think about is the harm that they could come to (obsession) and spend your life making sure that doesn’t happen (compulsions).

This is not a combination I would wish upon anyone, not my worst enemy. I couldn’t travel alone on a bus into Newcastle, couldn’t nip to the shops or take my oldest to school. On the rare occasions I did venture outside I wouldn’t/couldn’t speak to anyone. It was the darkest place I’ve ever been to. I ended up moving home with my parents, only they knew the true extent to how bad I actually was, taking sleeping tablets 6 nights a week for some respite from my inner turmoil while anti depressants settles themselves in as my new sidekicks (still with me, couldn’t live without them). I could no longer work in finance and found myself with no job for the first time in my life. I felt I was a failure and the world would be a better place without me.

If you’d said to me then Christine hang on in there. You are going to make a difference. You’ll play a part in saving lives through the charity. You’ll produce theatre shows and a film. I’d have christened you barmier than I was. But look what’s happened! Granted I still take meds – no shame in that, I practise mindfulness and really try to keep on top of my mental health.

When I talk about being driven you have no idea how much I’m driven. I see these opportunities as second chances. I see them as my way to cover up some of the cracks in my own walls. Being driven fuelled with anxiety on most days is bloody hard. I hate anxiety, sometimes I want to get the kids off to school and then hide but I don’t I sometimes need some encouragement to keep it moving and I do my absolute best.

The Life of Reilly is cathartic for me. I love writing when I get the chance. I love to share our experiences and feel I’ve evolved over the last 3 years of writing. I hadn’t a clue when I wrote my first blog that it would be viewed all over the world. I get thanks from countries I’ve never heard of because they feel like they aren’t the only ones ballsing this parenting lark. I get it wrong. We all do but I do my best.

I will do everything in my power to ensure that the stage play travels. I will work my nuts off to make this film. Wherever possible it will include autistic people. Acting, crew, runners. Everything in my power to make it happen. There are important issues to raise and millions to educate but I need your help to do it.

If you can help with any aspect of the film be it donation of time, sponsorship, product placement, locations, expertise then please shout. We have some great fundraisers coming your way including a Midsummer Nights Dream Ball!!

Moral to this one is no matter how shitty you feel there is hope on the horizon. Keep your chin up, seek help, take the meds, speak to the counsellors just do what you’ve got to do when times are blue. Never be afraid to speak up.

Great things could be just around the corner xx

https://www.crowdfunder.co.uk/the-life-of-reilly-film

That’s a wrap!

Had such a good week. Since Sunday we’ve pretty much worked on The Life of Reilly short non stop. I feel pretty emotional about it and cannot wait to see the finished result.

Deciding to push ahead with making the film was a no brainer for me. This blog has provided much enlightenment and entertainment over the past 2 years if the feedback I’ve received is correct. We have a lot of eyes on The Life of Reilly and it just seemed such a great opportunity to spread our wings and reach a bigger audience.

I put my hands up now and say I had no idea how much work goes into making a film. After all what more can you need than the actors, a camera and someone in charge. Pffft I’ll tell you what you need. Locations, actors, scripts (John Hickman), cameras, lights, mics, sound equipment, smoke machines, props, cars, food, runners, directors, makeup, hair, green room, paperwork, drone, chaperone …. need I go on ? These people worked HARD. Local heartthrob Andy Mills played a blinder as the miserable taxi driver and Scott Ritchie in his dressing gown our nosey neighbour. Just brilliant. The actual neighbours on location too not one complaint about the madness over the last few days and even a borrow of someone’s front door. That’s Annitsford for you, all rooting for Reilly and helping us along the way.

Charlie Price from Manchester plays Reilly. He is the most adorable lad. Professional is an understatement. He knew about autism and was so keen to meet Reilly in real life. The days start early and are long, I found it difficult never mind being the ripe old age of 7. He loves it though. Loves meeting people and acting, he’s awesome just like his Mum Andrea. I believe things happen for a reason more often than not and I’m grateful this lovely family have come into my life. Andrea cried with me at some of the scenes and had really thought about the relationship between myself and Reilly. Charlie told her the first night that he loved her and she got upset that I’d never heard that, almost guilty. I’d love to hear it, I hope I do, maybe I won’t but I know it. It’s in every cuddle and stroke of my face.

Stephen Woods the director and his team Jamie, Chas, Ryan, Charlie, Jake, Cal, Marni, Chase & Sophie from Act2Cam have blown me away. I advised a lot on set and got to see them in action. The work that goes into getting these shots just right is incredible, it’s creative, it’s frustrating, it’s their passion. No second bests.

Now Alison Stanley who you will know from writing the stage play and playing Mam Joanne in The Life of Reilly has knocked it out the park. She has looked as rough as a badger for 3 days in her pjs, messy hair, no shoes or makeup. The polar opposite of how you see her on a normal day with her lovely nails and immaculate hair. Real minger this week. She’s spent hours sitting outside in no shoes or coat shooting scenes. She’s cried, she’s laughed, she became her character Joanne. It was awesome to watch. Alison has felt the frustration of having her own son failed exactly the same as some of the scenes she acted so well. She’s been there. She nailed it.

Crissy Rock what can I say. You amazing woman. You’ve made me laugh and cry. I’ve learned just how much more there is to this incredible lady. Talented with a massive heart can’t wait to meet up again.

It’s important to me that autistic people act and crew on this project and that is something we will be sticking with in the feature. The feature will see Reilly grow into a young man and we’ll see some of the difficulties thrown in his way, the failings and misunderstandings but you’ll also see the love of his family, his achievements, his awesomeness.

All I can do is thank everyone from the bottom of my heart for contributing to this project. We can make changes to attitudes by teaching empathy and understanding. A glimpse at what happens behind closed doors is sometimes all it takes. We’ve opened that door a little to you all.

I’m asked constantly what happens now. The film has to be edited and then we will have a premiere at the Tyneside Cinema with some guest speakers in June. We will enter it to short film festivals and more importantly we will use it to dangle the carrot for funding and hopefully commissioning a feature length. You will not find anyone more driven than Alphabetically Autistic (myself, Alison & Kelly) to make it happen.

I have special thanks to my little pal Lisa Bewick who signed up to let us have her home for 1 day originally and that turned into 4! Not many would have been as cool but thank god you’re Team Reilly and can see the bigger picture. Elaine and Stevie from The Bridge Inn Annitsford opened every morning before the birds were up to ale sure we had a green room and were fed and watered. Above and beyond, amazing food, amazing hospitality that won’t be forgotten xx and last but not least Ken & Pat who have looked after the real Reilly and brother Ellis xx

The Life of Reilly – Missed it? You missed out!

Yesterday was one of the best days I’ve ever had. You don’t hear that from me very often. The Life of Reilly play was on at The Northern Stage one of my favourite theatres. It was sold out completely and in hindsight we should have booked 2 nights.

Alison picked me up at 9am to take the props to the theatre. It’s not a big grand set, it’s actually an eclectic mix of household items pulled together to look like a well lived in family home with its assortment of discarded toys, washing and the odd bra.

I loved lurking around behind the scenes.  I did NOT love having to play Reilly’s part in the tech and rehearsals.  Standing under the spotlight reading out these lines to an empty theatre in my usual squeaky, irritating tone.  How do they do it?  Give me tonsilitus any day over acting.  I sat on a marshmallow teacake ready for the party scene, stood on another and trailed it around the perfectly painted pitch black floor. Page 28 of the script stuck to said marshmallow on shoe and followed us.  Awful.  I’ll stick to being bossy and irritating.  I did serve my purpose though and it was quite exciting despite epic cringe levels.

It’s old hat for Alison. Her last play Bedsock’s and Secrets about dementia was outstanding. It had a spell at the Edinburgh fringe as well as many theatre’s and was eventually snapped up by the NHS trust to be used as a training tool. She’s super-talented and has done an exceptional job here with The Life of Reilly – writing, producing and acting.  You know from the opening seconds that it’s been written by someone in the know and that just continues to gather substance throughout.  Real scenarios experienced by real people.  I have to admit I love the numerous ‘meetings’ between myself, Kelly and Alison discussing funny, heartbreaking, sad, happy; incredible things that have happened between us over a traditional breakfast (I’m sometimes Farmhouse because I’m greedy).  Autism Mama’s who get it, who live it and want you to get it too.

I love sitting in the audience watching peoples reactions to the play.  There is always tears, there is always some swearing (just a little bit), there is always laughter and there is always a standing ovation (I know it’s just the second time it’s been done shhhhhh).  The tech guys even had a tear at the back of the house.

Now i’m not being biased.  If I had seen this produced by any other company I would give it the best review and the highest star rating simply because the acting is brilliant, it is an accurate portrayal of many of our lives (see ‘Joanne’ politely discussing the school transport issue with the Council)  We’ve all done it.  The characters are lovable even the old bag Granny Mary and it educates most importantly.

Between acts 1 & 2 I talked to people to gather their thoughts.  They were blown away.  I talked to a lady sat on her own at the back who had bought the last ticket.  That lady was a GP on the Northern Stage’s mailing list and on seeing the content thought she SHOULD see it and I agree.  Every GP, teacher, police officer, nurse, therapist, social worker, teaching assistant, sibling, grandparent – you see where i’m going with this.

It’s a small cast and it works perfectly.

We have Kris Roberts who plays Reilly.  

Kris plays it so well you can feel his struggle and vulnerability as a child but his humour shines through in just the right places.

Alison Stanley plays Joanne Reilly’s Mam.  

Fierce, reads everything, challenges everyone and takes no shit.  Joanne is me, Joanne is every Mam that knows what an EHCP is, Joanne is every Mam that lies awake at night wondering what happens when she dies.

Steve Woods from Act2Cam plays Ged Reilly’s Dad.

Ex military turned doorman who fears he isn’t good enough and keeps his fears and emotions bottled in.  His parts break my heart in two.  If you know Steve you know why.

Marce Gaygaskell plays Granny Mary.  

Sarcastic, blunt without an ounce of empathy.  I find her parts hilarious and she has some of my favourite one liners.

Warren Simpson plays Clarkey Geds best friend and fellow doorman.

Tries his best and puts his foot in it everytime its open.  Prone to the odd swear word, a can of red stripe and a pizza.

and then there is Scott Ritchie.  

We auditioned for an actually autistic actor to play Reilly’s friend Craig, we did that because it makes sense and because well we scream for inclusion yet hadn’t included ourselves, the cast have learned from him and his opinion has been invaluable.  He did an amazing job of which he should be extremely proud.  I would not, could not have the courage to stand on that stage and lay bare how being autistic makes him feel.  How he feels it through the fibres in his clothes, on his skin, to the bones.  Scott even had some amazing video messages of encouragement from amazing actors Morven Christie, Richard Mylan, and Kacey Ainsworth.

I know Alison will be looking to work on more projects with actually autistic people – there’s some incredible talent there.

Their characters progress throughout the performance with understanding and acceptance that their lives are the same but different and you will love them all, including Granny Mary.

When the play ended there was a standing ovation which was truly deserved.  I feel like the audience really feel like they’ve been on the same journey.  To be fair a lot of the audience already have or are going through it now.

So we love it, the audience loves it, the guys at the Northern Stage loved it so it would be only fair that it happens all over again.  Please watch this space for the next date.  You will not be disappointed and I will guarantee you will learn something.

Autism isn’t going anywhere.  Why should autistic people have to take years to learn to adapt to fit in what is perceived to be typical. To surpress how they want to express for fear of  persecution because it’s not ‘normal’.  WTF is ‘normal’ anyway.  Understand it and be more accommodating as humans.

Proud to be a part of it all and thankful I have these people in my life.  xx

 

 

 

 

My Sons not Rainman

I came across this book while browsing twitter one night while lying in bed worrying about the future as you do, well I do.  I sometimes lie for hours scrolling through #autistic #autism #meltdowns making myself feel better with other peoples frustrations or jubilations.

I liked the title immediately.  If you have an autistic child you will be familiar with the fact that a lot of people expect your child to have a remarkable magic talent.  “What’s his thing?” “I bet he’s good with numbers” are the common ones.

Not all autistic people are Savant’s. Savant’s are people who have incredible abilities usually falling into a few different categories to name a few:

Musical abilities – being able to playback perfectly a piece of music after hearing it only once.

Artistic abilities – Stephen Wiltshire a prime example his ability to remember skylines and reproduce them in drawings is breathtaking.

Calendar Calculation – being able to produce the day of a week a date falls on thousands of years away.

Memory – Reilly has an awesome memory and shocked us all when he started to google  bus registration numbers and we realised they were actual buses he had been on or seen weeks even months before – but I don’t think he’s Raymond Babbitt. If he is I’ll meet you at Aspers!

The book written by comedian John Williams really struck a chord with me.  I related to everything he said but its so funny too.  My favourite part is his disability top trumps and that SEN parents can be arseholes too.  I don’t want to spoil it for you.  But I am guilty as charged – If your child had 4 hours sleep mine had 3.  I also lol’d at the school shoes and too short tracksuit bottoms I see this week in, week out.

It’s honest, it’s sad and its thoroughly enjoyable.  ‘The Boy’ as he is loving referred to has an amazing relationship with his father despite the many challenges they face over relationships, schools, behaviour, disability etc.

You can click on the link below for more information.  Myself and my Mam read this book on holiday and now my husband is half way through and loving it and sometimes not loving the stark similarities in our lives.  I thoroughly recommend it.

Absolute Shambles

I’ve seen in the media this week (link to Carrie Grant) that there have been discussions in South West London to no longer accept referrals for assessment and diagnosis of Autism Spectrum Disorders.  Even typing that sentence feels wrong.

I cannot get my head around this.  The only children who could be referred are those with an additional mental health condition the likes of ADHD or depression.

Reilly is autistic.  He isn’t ADHD, he isn’t depressed.  Where would that leave us.  No referral, no diagnosis, no help, no support, no special school place.

It has to be financial, I cannot think of any other reason but I can assure you that the knock on affect for these families will have severe repercussions.  We all know that early intervention is crucial.  You need to open doors quickly and access whatever help is available.  Reilly simply couldn’t be shoe horned into a mainstream school, I knew that before he attended his afternoon visit to nursery that they couldn’t handle him and I was right.

Reilly didn’t want to sit nice on the carpet with his milk in a carton that he couldn’t bare to touch and listen to stories. He wanted to be in playing with trains but thats only allowed if you have a band on and theres only three bands allowed at any time in each area, he didn’t get it.  He didn’t fit and I wasn’t going to make him.  And oh lord he’s still in nappies!!

We were lucky enough to have a Sure-Start nursery a bus ride away where the staff were amazing and helped me so much.  They were an emotional crutch to me at times. Times when I couldn’t leave him, times when it took me 2 hours to get him there instead of 20 minutes. Times when Id had 2 hours sleep and happy times when he ate the garlic bread.

Guess what happened to that Sure-Start Nursery?  It was closed.

This coincided with Reilly needing to start big school.  No diagnosis, no special school and an entitlement to 5 hours per week support.  I say again 5 hours per week.

With Reilly’s diagnosis he went to panel for them to decide where and how Reilly should be educated.  There were zero spaces available anywhere with any type of specialist provision available.  He would have to go into mainstream school to “prove a point” that he couldn’t remain there.  Imagine using your child to prove a point to get them the right education they are legally entitled to.  The poor teacher who chased Reilly for one week around the school between 1.30 and 3.15 must have been near a breakdown at the end of it.  We proved a point and then threatened action with the council.  Tadaaaa we were offered a place at an excellent school for Reilly, not the right school according to all of our professionals but better for him than mainstream at this point.  Reilly spent a year there and came on leaps and bounds he was then moved to his current school.  It’s exceptional.  It’s right for him and us.

Would he be here without a diagnosis?  Absolutely not.  Would I have had that breakdown that I teatered on the edge of so often – I can guarantee it.

So is it about money? Is this the start of privatisation?  There can’t be any other reason.  How many people can afford to go private for a diagnosis?  It’s absolutely terrifying.  Will it roll out further?

Our lives are hard enough, we need support just to lead semi normal lives.

Mental health services are being cut left, right and centre. Mental health problems on the rise and I can assure you it will get worse if these plans go ahead.