Jurassic Fantastic!

I made it! I got through the holiday. I started the week very nervous, I do hate coming out of my comfort zone, staying in a strange place, sleeping in a strange bed, coping with strange food. OK it was only Dorset but it was still stressful. The apartment was very nice, although I flooded the bathroom a few times. The bed I felt was a little rickety but I had a very nice room which was very good. I suppose the thing about holidays for me is being able to lose myself in interesting things and not constantly thinking stressful and nervous thoughts. And you know what this holiday achieved it! I do feel safe when my parents are around but it’s also been great to get back to my own flat and my own bed – that feels safe in a different way.

I think the highlight of the trip was finding myself on a windy morning at 9.30 on a Sunday on a guided fossil tour. We had a brief talk on fossils and what to look for and then headed for the beach at Charmouth. I was promised I would find a fossil however dad and I had to rely on mum to find a small Ammonite. We searched for about an hour and half with Mum’s find as our only success. Me, I tried to have a conversation with one of the guides about the stratigraphy of the cliff face in the hope of learning about different events which laid down layers of sediment. Although she was brilliant on the fossils, she seemed a little confused about this – but it is amazing how far GCSE geography and reading National Geographic can get you. I must say the whole trip was great and we then went for a lovely Sunday lunch after wards in a small hotel which was also hosting a get together of the local vintage Porsche owners! Fabulous cars but it did make parking a bit stressful!

One of my true passions in life is anything BC – Greeks, Romans, Mesopotamia, and everything Stone, Iron, and Bronze Age. Thus I found myself surrounded by sheep at the top of an Iron Age hillfort on a Monday. I was really surprised that Maiden Castle didn’t have a visitor centre or loo, but the actual site was amazing. Really I should be an archaeologist but can’t because of my OCD, but I do love History, usually Ancient History with an occasional dip into Romanov ruled Russia.

We also met up with some friends of my parents from Uni days, one of whom is my Godmother and believe it or not we went to a Swannery. Now you may say Rachel you and bird droppings don’t really go together but I actually had a really good time. And this was another of those times when I managed to lose myself completely in an activity. In fact, here’s a photo of me totally absorbed in cygnet watching. I refused to help at feeding time but there were loads of newly-hatched cygnets and the swans were very tame so you could get right up close. I felt a little contaminated after it all but I thought I coped really well. One bonus I almost forget is that I got in free cos my dad said I had autism. Well done dad, rock on autism!!! Always worth asking and it helps to raise awareness. I must say I was worried about conversation with our friends and saying the wrong thing but I think I did ok. My parents reassured me I did.

It was very nice being with my parents for a week although I know that my constant anxiety does wear them down a bit. In the end the holiday flew by. I managed the anxiety well, although “the fear” was never far from my mind. I get very anxious about eating in case I choke. This means I eat really fast to get through it. I did manage quite a few meals out which I was very impressed with myself for. We didn’t rush round trying to fit everything in, we took it very gently. I listened to a lot of music on the ipod which was useful to distract from stress. All in all though, a good holiday had by all. We’ve actually started to think about next year!!!!

Are Holidays meant to be This Stressful??!!??


Man, life can get hectic!!! Last week I had psychiatrist, GP and Clozapine clinic, all topped off with a family get together. I was very anxious about all of them especially the family get together. The event was on the Sunday so I spent most of Friday and Saturday in a headachy nauseous frame of mind. But mum bundled me into the car and off we went. It was an hour’s drive and thank god for ipods. I enjoyed a Kiss live album as we sped along. For me though it is not the actual being with relations that scares me it is my usual fear that I will choke on my food and therefore vomit. I even fear my own cookery but going out is very stressful. I always tell myself to chew well so it is easier to swallow. The stress of it all made me very tired and today, the day after, I’m shattered. Stress like everyone knows is very tiring and draining but constantly fearing one will vomit any minute is particularly wearing. And, as I may have said, even doing something very familiar, like going to do my shopping on a Monday, is still frightening for me. It’s as if I’m facing it for the first time over and over. I’m very proud of myself for managing last week but very aware that I always need a lot of time to recover and it’s important to recognise that and not be hard on myself.

But it was nice seeing family and we had a good time but I do find social interaction tough. There were a few moments when I’m thinking “mum and dad save me”. Fortunately I managed ok and chatted about where I’m going on holiday at the end of this week. Yes, that’s the next thing to gear myself up for! I’m absolutely petrified about this holiday although I also look forward to it! Not sure how to explain that! I’m so scared about me getting ill or my parents getting ill so that everything will be spoilt. I feel beside myself around the whole thing. In some ways I shouldn’t be so frightened because we normally have a great time. But I have a problem rationalising like that. For me it is a blank slate again, the first time, as it were, and I feel a sense of doom. Last year in Salcombe was great and I really relaxed and enjoyed it. Hopefully once I’m in the car on the way with my trusty ipod, I can look at the scenery as it passes by and my sense of dread will fade. My parents are also very reassuring but do push me a bit to do things. We will go out for a few meals on this holiday if I’m up to it. As I’ve described earlier this is challenging but as my mum says that I must try to keep doing things otherwise your world shrinks that little bit more.

I shall therefore put my best foot forward and hopefully enjoy a really great holiday with my parents – let you know in a few weeks!!!!

Easter Frolics!

Oh! Sweet Easter. Lambs in the field, the end of the daffodils, the smell of lunch cooking on Easter Sunday, and of course being with family. I’m not sure whether I’ve mentioned this but I have a nine year old niece. The week before Easter my parents had her for the entire week doing fun things. Now I do find children very difficult in lots of ways. They are unpredictable, unmanageable and germ magnets. I must confess I tend to avoid them as much as possible from birth through to adolescence. So having a niece is very challenging although I do love her loads. In fact when she was born I was going through a very hard time and she gave me a reason to cling on. The problem is basically I can’t relate to people my own age let alone a child. I have little understanding or capacity to play so that’s out. I can do board games which as a family we do all enjoy. But because I find children difficult I’ve told everyone please don’t leave me alone with her although sometimes this does accidently happen and this scares me. Mum did an Easter egg hunt round the house and we also took my niece to a hunt at a local National Trust property. Last year the hunt was a doddle, this year it took me, grandma, grandad and my sister-in-law a good time to work out the clues. The actual word to spell out was Narcissus so we had to explain about the myth to my niece. In many ways it was a very middle-class hunt, I think you needed a degree to solve it. On the plus side I got some nice Easter eggs which I will be enjoying over the next week.

Of course now is the bank holiday season which messes up routine big time. It is Monday! Why am I at my parents? Oh yes bank holiday. It throws the whole week out and now I’m starting to think about my holiday which is a major cause of stress. I do like the idea of holidays and my parents always take me to nice places. We hire a cottage and do sightseeing of local places of interest and we have a few meals out, one being fish and chips. But I do get stressed. In some ways I’m lucky cos we all take a lot to do – dad a bit of light work on his laptop with a good wi-fi connection, mum reads loads of books and I listen to music. It is an adult holiday with autism thrown in.

Anyway enjoy your long weekends and try and fit in as much washing you can get in on Tuesday having missed, well for me, bedding washing day on Monday – oh the confusion, oh the anarchy! Still there seems to be a lot to look forward to as summer approaches. So “keep calm and rock on”.

Zen and the Art of Dentistry

What a week! I have been building up and worrying about this week ever since I realised everything that I needed to do in it. I had a haircut, went to Clozapine clinic, went to the GP, had therapy and the biggest of all, the DENTIST. I always worry about the hairdresser in case I get a bout of nausea half way through, Clozapine clinic is manageable. I sit in a separate area because I find the smell a bit stressful and as with all waiting rooms I find the germ potential mind – blowingly enormous. The GP was my usual begging session – “are you sure there is nothing you can do about my anxiety?” I ended up with hand cream to use as soap so my hands aren’t so dry. This will involve a new hand wash regime, trying to convince myself my hands are clean not using soap. It could be very anxiety provoking. The doctor said the cream had antiseptic qualities so hopefully I can trick myself into thinking my hands are clean.

The biggest of big things was the dentist. I think I may have mentioned a trip a few months ago, well this one was the big one – having a crown fitted. I managed drilling, having a mould made and having a temporary filling cover. As you can imagine I was scared but between the dentist and my mother we made it through. We put Madonna’s greatest hits on the CD player and I just lay back and prayed I would be ok. The good thing about my dentist is she explains everything so I know what is happening step by step and feel comfortable with it. She was gentle, considerate and told me if I wanted to stop any time just let her know. She showed me all the instruments she was going to use and gave me a trial run of what the impression-taking would be like – without the gunge but it did give me an idea of how it would feel in my mouth. She also told me how long everything would take and gave me a running commentary on what was happening at each stage and what would happen next. I also find the music helps. I know Madonna so well that instead of thinking “man, I’ve got someone with a whooping great drill in my mouth”, I concentrate on the words and of course pray. I think the dentist is very difficult for people on the spectrum cos the whole experience is rather overwhelming and overloading with different experiences coming at you one after the other and finding a dentist who understands and has possibly done some homework about autism is vital. When my tooth first started to hurt I wasn’t seeing the dentist I see now. He said it would have to come out but since seeing my parents’ dentist she’s saved the tooth and made the dental experience just a little easier.

To cheer everybody up after thinking about the dentist here is a photo of me – you’ll have to trust me on this because I’m in my fantastic motorbike gear and so unrecognisable! I am 20 and living in Glasgow. I will tell you more about my biking adventures soon.

Why and How

Image courtesy of Royal Academy of Arts, Photographer Roy Matthews

So far the website has been the home of Rachel’s blog. It appears that her mother is now muscling in!

I decided to write because I wanted to talk about the “Why and How” event at the Royal Academy yesterday. March 18 ) One word would do, actually – brilliant! – but I think it would be good to be more expansive!  Ellen Li and I were part of a panel talking about female autism. Do have a look at the Royal Academy website to find out more about the event and also to find out more about how the Academy creates opportunities for access for a wide range of people who might otherwise be excluded.

I know that the RA had received a large number of submissions and so it was a huge privilege to be selected. My friend Susan Potter who, by a very circuitous route, alighted on Ellen as the illustrator for “A girl like Tilly” way back in 2014,  put in the proposal and to my delight and surprise it was accepted. In the light of the huge interest in the subject that there clearly was among the delegates it was an appropriate decision. It touches many, many more lives than has been previously thought, as was evidenced by the personal experiences some delegates spoke movingly about.

I will say more shortly about the panel session. It came at the end of an amazing day that Molly Bretton and her colleagues had organised. A fascinating list of delegates, many from museums and galleries, worlds I am certainly not familiar with. An extremely interesting introductory session by staff at St Joseph’s Specialist School and College kicked off the programme. We heard inspirational case studies of young students with complex needs who had responded in remarkable ways to a collaborative approach between the Art Therapist, Artist in Residence and the Art teacher. I especially related to the overall goal which is to promote emotional wellbeing through the creative arts. This links with my “day job” as a CAMH Learning and Development Consultant providing training in mental health to schools and colleges in Cambridgeshire. I think that we have a responsibility to create school environments in which all our children and young people can learn how to look after their mental health and emotional wellbeing. A huge part of that is to equip them with the life skills/ resilience to cope with life’s challenges, including the ordinary ups and downs and distress which we all experience.

I then attended a workshop called Autism, sensory processing, wellbeing and clay (run by Tatjana Zeljic). This was totally out of my comfort zone which is actually why I chose to go – only realising on the day that the panel session itself was taking me well beyond my usual boundaries! Each of us had a rather- to my mind at least- intimidating ball of clay sitting in front of us and the invitation was to initially create something of one’s own, then to work in a group.

I don’t really like getting messy and I wondered if I would cope. Rings off fingers and just get on with it! The texture was strange and I found myself just moulding it without a clue in my head what to make. The young woman next to me wisely advised me not to overthink it! I quite reluctantly decided to stop just kneading it around like a Bake Off contestant. And what did I make- well, something resembling a bowl of fruit. I’m not sure if anyone else could actually recognise it as such.

What was incredibly enjoyable was the chatter round the table. People who had just met for the first time! Whether there’s something about a hands on activity that encourages interaction is an interesting thought. As a result the group activity was brilliant. One person already had an owl, someone else a cat – yes, you know where this is leading —! Soon we had a boat, a runcible spoon (what exactly IS that?), honey pots plus hive and bee, money in an actual five pound note and a pig “with a ring at the end of his nose”. Great fun, impressive that we had collectively remembered the poem and we were all set to embark on any other nursery rhyme you could mention.

So we were wide open to interpretations! The feel of the clay putting us in touch with our childhoods etc! Overall not a bad place to go back to for most of us but an awareness therefore of those for whom it might be intimidating. The facilitator was skilled and containing and talked very interestingly at the beginning about the use of clay in a therapeutic environment “to enhance creative engagement and wellbeing”.

The workshops were, in general, offering experiences of the sensory world. I guiltily crept out of my second one in order to make contact with family at home and buy a gift for my daughter- about more later.This is an opportunity to apologise to the super facilitator and I, of course, heard glowing reports of the session which made me feel slightly miffed with myself! But even by then I was beginning to feel a bit “overloaded”. I don’t think that the day was actually set up with the intention that we would all experience sensory overload but that’s certainly where I felt I was heading at one stage and it was pretty uncomfortable. Experiencing that almost constantly must be overwhelming – indeed we know it is. An extremely helpful piece of experiential learning

My second and last workshop of the day was Music and movement for children on the autistic spectrum (run by Athina Stamou). When I arrived lots of people were already lounging around on bean bags but, fortunately for those of us with dodgy backs, chairs were also available. This was the second time that day in which I realised I had walked into something fairly intimidating for me. There was talk of dance and activities. Ballet lover though I may be, I do not regard myself as a natural dancer – aforesaid dodgy back is also an issue!

But, the session hooked me in and soon I was weaving around, responding to the – extremely enjoyable – guitar music, beautifully played. And, guess what, it was great fun! The excellent facilitator had given a short presentation with very impressive evaluations indicative of how well the dance/ music, sorry –telling interventions had worked with a group of primary age children in main stream schools some of whom were on the autistic spectrum. It enabled them to feel more included and engaged and also encouraged speech in a non – verbal child. Very impressive.

The question at this stage taking shape in my mind was “How to follow that?” The workshops had been so good, so stimulating and thought provoking and I was feeling concerned about how people would now engage with a session in which they were all sitting in rows. I also feared that many might have decided to start making their way home after a long and inevitably tiring day.

But I think that there was huge curiosity about our subject. It’s also pretty high profile right now.

Our title was Making the invisible visible. Susan had taken “A girl like Tilly” as the inspiration with the collaborative process between me and Ellen very much in mind. How did we combine text and illustration to bring a little girl’s inner life alive on the page. One of our key aims in the book had been to portray Tilly’s feelings and how she struggles to communicate and understand them. This is indeed a fascinating topic and certainly one on which we could have talked for ages. In the event, and not surprisingly, the delegates chose to focus on learning more about how autism presents in females. We had asked Sarah Wild, Headteacher at Limpsfield Grange School to join the panel and her experience and knowledge were hugely helpful- as well as her enthusiasm and sense of humour! Susan guided us through with superb chairing.

As well as sharing my thoughts about the day, I really want to say more about the “real Tilly” , my daughter Rachel, which I didn’t do in the session,  and the reason for writing the book. The original plan was for her to be on the panel with us and she had expressed great enthusiasm about the event. My husband and I talked with her about how we could make the trip to London manageable for her. On past visits the underground and trains had been challenging. She had talked with Susan and Ellen and been entranced by Ellen’s portfolio of spreads for “Tilly” showing how ideas had evolved over time. There is no doubt that Rachel would have done a great job. She is very bright, articulate and funny. She is also passionate about widening understanding of female autism. But the practicalities were just too overwhelming and, I think, the anxiety about how long it would take her to recover and be able to manage her daily life again after such an upheaval. I believe that’s an underestimated and misunderstood aspect of the experience of those on the spectrum. It can take a very long time to get back on an even keel. She felt very upset and that she was letting people down. But, on the day, she felt very present to us all.

Of interest to me was that over the previous weeks the true context for the book had slowly dawned on me. I had always said that “I sat down to write an angry letter and it turned into a book” but why was I thinking of doing that on this particular November night three years ago?

What I slowly understood was that we – Rachel, her father and I – were caught up in a crisis. Rachel had been in supported accommodation for two years. In fact this was the second place she had lived in since leaving hospital after a stay of some eighteen months through 2006 into 2007 and the expectation/ plan was that she would now move on into independent living. This was an alarming prospect for all of us. What would the accommodation be like, where, what kind of care package? How on earth could we take this young woman, with a history of serious self- injury and multiple suicide attempts, to her own home after a visit to us and leave her?

At the same time, the boiler in the accommodation had recently broken down and there seemed to be little sense of urgency about getting it repaired, despite the fact that residents were without heating and hot water during a very cold November. The staff were doing their best with a housing association that didn’t seem particularly interested. Rachel was able to stay with us while repairs were being carried out and, in fact, her room was soon habitable again. But others weren’t and lots of very vulnerable people with serious mental health issues were left to cope, not having friends and family to go to.

David and I decided that this was unacceptable. There seemed to be an attitude that these vulnerable people were of no account. This struck a chord in terms of our own experience, trying, sometimes, in vain, to make people understand Rachel’s difficulties – and indeed our own- and to get support. So we engaged in yet another battle and wrote letters, made phone calls etc. Many parents will know that these battles are unending. They go with the territory.

Hence, angry letters being habit forming, there I sat prepared to write another one. This was going to be a tirade against the unfairness of the world that had allowed my daughter to be undiagnosed/misdiagnosed (eg. Borderline Personality Disorder) for so long and the resulting misery she had experienced.

But, it transformed into a book! My memory is that initially I started writing a kind of family biography, but it morphed fairly quickly into a children’s book, a text that definitely needed illustrations for it to be accessible. And not just to children. I felt from the beginning that this was for adults,families and professionals too. And the name Tilly? Well, that also came out of no- where. Apparently it means “Strong in battle” in German. How good is that!

I use the word “transformed”, advisedly. For me it means “hope and positive change”, being strongly associated with one of the places I love best in the world, the Royal Opera House, truly a place of transformations. My special favourite is when the Christmas tree grows and grows ever larger in The Nutcracker, the nursery comes alive and Clara learns about falling in love for the first time. What a magical journey it is.

I have often said that the book felt meant to be. So many things have fallen into place so easily; finding the wonderful Ellen, being accepted by Jessica Kingsley. But it’s also worth saying that it’s often been a painful process, taking me and my husband back into dark times, the sense of wasted time, lost opportunities, guilt that we might not have pressed hard enough, written too few angry letters.

Also, I would describe ourselves as a private family; we try to manage stuff on our own. This may or may not have been a good thing for us/ Rachel but it was therefore a very big step to take Rachel’s story out into the world. Who knew what the reaction would be?

But, above all, still with transformations in mind, the reason for carrying on with the book was to give meaning to Rachel’s life, to transform her experience in some way. Sadly she finds it very hard to find positive achievements in her life. Her experience at secondary school, the total lack of support and understanding had made her feel a failure despite other positives such as being in  a punk band with her brother, her horse riding and fencing. When we moved to Glasgow in 1995 she gained three As in her Highers and went on to obtain a place at Glasgow University which she was unable to take up because of her deteriorating mental health – in particular her OCD. How can you cope with study when there are only certain times in the day when you can pick up books, use a computer etc. And yet she showed incredible will power and determination to make something of her life, always with the hope that things would change. She did ride a motorbike, she did some very creative voluntary work, she enjoyed going out with her lovely, committed befriender. And people warm to her, become very fond of her because she has such an endearing personality and her intelligence shines through. Most of all how can we convince her that she has fought and conquered demons which many people would have been defeated by?

Rachel was clearly a puzzle to the doctors and nurses who increasingly, became part of her life both in Glasgow and then in Cambridge because of the escalating self- harm and suicide attempts. Looking back I realise that they were trying to construct a narrative to fit the way in which Rachel was presenting. A diagnosis of Borderline Personality Disorder seemed to be the closest they could get – however her background, family circumstances both past and current really weren’t congruent with that. Our and Rachel’s frustration built up over the apparent lack of proper understanding and failure of all treatment interventions.

Then, six years ago a perceptive music therapist wondered whether Rachel might be on the autistic spectrum. She was assessed and the consultant had no doubts given the developmental history.

Has having the diagnosis made a difference? Well, for us as a family it provided a narrative that totally made sense of our experience. Rachel will need to speak for herself in terms of what it has meant for her. The wilderness we lived in for so long is shared by so many girls, women and their families. The study of autism has been so male centric – and to some extent still is, although, at last, the call for proper research is out there. As the girls at Limpsfield  school say, “We are different from the boys” and that is what schools, colleges, professionals in all settings have to get their heads round.

And making a difference is what “Tilly” is all about. Offering Rachel a different narrative about herself, that her story can help others. Helping me to realise that yet another angry letter can only achieve so much. (And acknowledging how much sadness and grief lies beneath the anger) So much better to aim to make a real difference, reaching a wider audience. And we are already finding out anecdotally that it does, bringing comfort and reassurance, kindness and compassion into difficult lives.

Thank you so much to Molly and her colleagues at the RA for providing the opportunity to share our knowledge, experience and hopes for the future.

–    Helen 

Anxiety, Stress and the End of the Universe

“Oh, the anxiety and how it troubles me”. Yep you guessed it, my anxiety has got worse. It started to deteriorate about Christmas and now I’m having trouble eating, swallowing and sleeping. I have been begging for help but everyone just says it’s normal for Autism. I also suffer from terrible depression and that has been getting worse too. I feel very alone and desperate clinging to any ray of hope to ease this awful feeling. Anxiety isn’t new to me I’ve had it lingering around chronically since the age of nine. The thing is of course which is worse autism or anxiety? How would life be if one had one and not the other? I can’t answer, all I know is I’m desperate for relief.

As a consequence to this I did not go to the thing for Tilly at the Royal Academy. I opted out about a week and half before the day having realised that my present bout of anxiety was too high to enable me to do it. As you can imagine the whole thing was very distressing, feeling like I’d let everyone down and of course I was curious about the event and wanted to experience it. I don’t think this is the last we’ll see of Tilly at such events so maybe I’ll be able to go to one of those. From my mum’s report the actual day at the Royal Academy went well. She said she enjoyed the workshops she attended and networked. She is now quite an expert on “female” autism and how it affects one. She was very good when I said I couldn’t go to the event and instead encouraged me and dad to have an afternoon at a National Trust property near Bury St Edmunds which has a very nice tea room. We did an hour’s walk and saw lots of lambs which cheered me since I was rather down about missing the Royal Academy. So all in all we all had good days if not the ones we intended.

Apart from the Royal Academy event and chronic anxiety life has been ticking over quietly. I’ve played a little golf, listened to lots of music and continue to read “the hitchhikers guide to the galaxy” – I’m on book three at the moment. Some of it is so surreal it is a bit complex but it is such a great story, so well written and very funny. Also I went to Build a Bear with the National Autistic Society where I bought two new bears. One is a horse called Kennedy and the other a sort of street cred bear who I’ve called Montana. My flat is getting rather full of cds,  Bears and souvenirs  people bring me back from holidays and that’s not mentioning my fridge door which is covered with fridge magnets, mainly from holidays my parents have taken in the last 6 years.

Anyway “onwards”. I know I must keep going even through the hard times. Let’s hope we can find some relief from what can be a “living hell”.

Why and How conference 2017

Saturday 18th March 2017
10am — 6pm

The Royal Academy of Arts are holding their annual Why and How conference. This year it will be about Engaging children with special educational needs in creative experiences and making art.

This conference will provide a space for attendees to consider approaches and develop ideas around the nature and value of cultural and artistic engagement for children with special educational needs and disabilities (SEND).

It will be a day of talks, workshops, networking and discussion sessions to explore, stretch and question creative approaches to engaging children with SEND with particular focus given to this year’s key themes, mental health and well being, autism, evaluation/legacy.

More information >

We’re thrilled to be involved  and we’re looking forward to learning and sharing ideas on the day!

“Busy, busy.”


Yes, it has been ‘busy, busy’. The last week and a bit have been full of challenges. I have often been very anxious. But I have come through which I think personally is a great achievement. The problem is that if only I could say to myself I did that so I know I can do it again. The trouble is it doesn’t work that way for me. Everyday feels like starting over again. My niece came to stay with grandma and grandad (ie my parents) for half term so I did a bit of auntying. Now I’m not really that great at it and find the whole thing very challenging, and I did beat her at tenpin bowling twice. I also managed burgers at a local restaurant without choking so that was confidence building. And I did play some nice games with her like Monopoly.

As many of you may have heard “Tilly” is going to the Royal Academy of Arts in March for the SEND conference “Why and How” and I have agreed to take part in a panel discussion live. Why I said yes I don’t know – but I do think it is really important to talk about female autism – but the whole thing is just huge. Not only do I have to appear, I’m also doing two nights in a hotel and eating out. My parents are coming, my mum will be with me, so I will be looked after. Also, in this most hectic week I’ve had our organiser Susan and the illustrator Ellen get together in my flat for a discussion on what we were planning to do at the Royal Academy and also Ellen brought along some of the first pictures she drew for “Tilly” and it was absolutely fascinating to see the process up to the finished book. We are now busy emailing each other with ideas. I’m just going with the flow and hope I don’t sound too nervous and dull on the day.

And if this wasn’t enough I also fitted in a trip to the dentist – I need a crown. I find visits to the dentist especially nerve-wracking, because I hate things in my mouth as well as the taste and smell. Fortunately I have a kind and understanding one. But the big highlight of the week was the trip to see “Rumours of Fleetwood Mac”, the best Fleetwood Mac tribute band out there. This my sixth occasion of seeing them and although the set list hardly changes year on year I’d still say they are a quality night out. It probably helps that I’m a huge Fleetwood Mac fan who has studied the band so my knowledge is really great. I did once about 13 years ago see the real Fleetwood Mac in London with my cousin and I must say it was brilliant but “Rumours of” fill a gap if the real band is not touring. I do find going out in the evening very stressful and I had my usual toilet “do I need to go/do I not need to go” the whole way through, but my National Autistic society carer Anthea was very good and got me through it. We even took a picture of me at the venue to send to my mum and here it is.

Things are calmer now. I got back on golf course on Tuesday and Friday. We did the usual shopping and cleaning. There is word of a trip to “Build a Bear” for a treat, I’m still looking for Montana and Kennedy!! To go with Madison and Dakota-Brie my other cheerleaders. Anyway as I said Busy, Busy but just about surviving!!