Saturday, 28 May 2016

Hospital update

For those who aren't following on Facebook (and why ever not?!, the news is that I've been in hospital with Sasha since last Saturday night. A whole week. She was sick and puffy the day I took her in, after 3 weeks of being poorly with what we thought was a chest virus (see my previous post Little things can lead to breakdowns).
Sasha in hospital bed

So here's a good news update; Sasha has finally begun to show some improvement.

I've been putting off writing this update because a) the doctors didn't get back to us until 6pm today anyway and b) it wasn't with the news I wanted to hear. Sigh.

So, to cut a long story short... No actually scrap that, there's no easy way to cut this short. I need to do a quick recap. We came to the Royal Brompton on Thursday because Watford hospital had discovered 4 leaky valves in Sasha's heart. After thorough scans here, 3 were found to be minor and one moderate. Heart function otherwise seemed OK though so doctors fairly quickly deduced the general problem, causing the leaky valve, was elsewhere in the body.

Pneumonia had originally been thought to be the cause of the effusion (excess fluid in space around the lungs - hark at me, medical terms expert now) in Sasha's chest. However they subsequently ruled that out, but were quite baffled by the way Sasha was presenting - no real fevers or general illness (other than the vomit on the first day, Saturday, when I took her to out of hours doc then got sent on to A&E). The puffiness under her eyes was the biggest indicator that something was up.

Via a few other suggestions, including Nephrotic Syndrome, and after many tests and scans, they have narrowed it down to the kidneys, and some sort of vicious Strep virus was mentioned. As they are heart and lung specialists here, they had to get in touch with the GOSH renal team, who helpfully didn't answer their phone all day. Finally they did, and the solution for now is to transfer us back to Watford tomorrow for 'a few days' (=they've not decided how long yet) while she takes some kidney medicine so they can monitor her and test her bloods daily over there. They also need to check her blood pressure which had been creeping up, and her oxygen levels which were too low last night.

So we're still not heading home, oh joy. Haven't broached this with Sasha yet; she seemed to accept we would be spending another night here. I suspect if she wakes up feeling better tomorrow then she'll be fairly distraught at another trip in ambulance which is not back home.

On the silver lining side, they have said no more IV antibiotics (though I don't trust doctors not to change their minds, it's happened before...) and I have now managed to get our gorgeous, challenging little daughter, who wouldn't take any medicine at all, to swallow both liquid and tablet medicines over the last week. Just got to hope she realises the importance of continuing that once we get home... I mean, I don't want to be threatening hospital again!

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Monday, 16 May 2016

Siblings ~ May 2016

At the second I snapped this, I knew it would be the Siblings photo for this month. Taken yesterday, on the 15th (the allotted day for these monthly photos), at approximately 7am.

We had travelled to visit family for a celebration on Saturday and were staying in a nearby hotel for that one night. The fire alarm in the hotel woke us all from our deep slumber at 620am, and we spent 40 minutes in the car park whilst the lovely firemen arrived to check the hotel out.

Bizarrely, I'd had a premonition that this would happen, just before going to sleep, and I'd checked the back of the door for the fire exit route. That's my top tip for if you're ever staying away in a hotel!

On reflection, it was interesting to see how the girls reacted to this unexpected occurrence. Our eldest was quite panicky - we're not sure where or when it started but she's had a fear of fire for a long time. She wanted to leave in her pyjamas, carrying as much as she possibly could. That included my necklace from the bedside table, which she knows I love and which she decided I wouldn't be able to live without, bless her. Tamsin did manage to pull herself together enough to then be able to help me with our youngest girl.

Sasha, who is autistic, was more visibly upset and started crying, quite quietly. She wasn't panicked as such, but had no idea what to do and she was scared. I managed to dress her and get her out fairly quickly though, and luckily grabbed my bag with my car keys in as we left the room so we didn't have to stand around in the cold.

It hadn't been a hugely successful weekend all round, to be fair. The three hour car journey at the start was too much for Sasha, despite the fact we let her sit in the front of the car to try and alleviate the travel sickness. I think sometimes people don't believe me, or don't understand when I try to explain about Sasha's distress at travelling in the car (by train is hardly any better), so I did take this photo of her when we stopped at the services. Tears were rolling down her cheeks and her face was all blotchy. She was ripping a tissue into tiny shreds. You can see the stress and anxiety, and it's not nice. Can someone please invent a real tardis?!

Sasha couldn't face entering the church for the First Holy Communion (which was just as well, as it was packed to the rafters and would have been a nightmare for her!). Her Dad had to take her to calm down in the hotel, then she joined us at my brother's house for the party after. By that point she was too tired and hungry to be sociable though, and none of the food seemed right for her, so she struggled to be with everyone else and just wanted me to stay with her in a quiet room. I eventually suggested she go back to the hotel with her Dad for an hour, just so that I was able to talk to my family! Meanwhile, Tamsin was having a whale of a time playing nicely with the other nine children who were there. Which is great, and how it should be, but does of course highlight how much is difficult for Sasha. When she returned from the hotel, she was constantly at my side, asking if we could leave again. There's no let up really.

My reason for sharing this is mainly to document how challenging social occasions can be for, and with, a child with Pathological Demand Avoidance. I see our eldest girl having fun, and I see the difference. I'm not sure everybody does. It's not Sasha being naughty, and it's not us being too lenient with our parenting. Of course there are 'good' days for Sasha, but as she gets older they seem to be happening less often, despite our best interests.

The Me and Mine Project
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Sunday, 15 May 2016

The difference between PDA and ODD

Our daughter was diagnosed by a paediatrician at the young age of two and a half. Her actual diagnosis is written as: 1. Autistic Spectrum Disorder and 2. Oppositional behaviours/pathological demand avoidance behaviours.

After a few months of searching for general information on autism, we experienced our 'lightbulb moment' when we stumbled across Pathological Demand Avoidance (PDA). We could tick almost all of the diagnostic criteria for our girl; the language delay with catch-up seemed particularly relevant. She was passive, resisted demands, led by a need to control, sociable and comfortable with role-play. The last two characteristics are not often associated with classic autism or Aspergers, and that is where we saw (and still see) the most difference.

PDA is an ASC. ODD is not.

She was lucky, I feel, to escape the suggestion of Oppositional Defiant Disorder as a diagnosis. It wouldn't have been right, but it would have been an obvious choice given that the word oppositional was being used. When training now, I am often asked 'what is the difference between PDA and ODD?

Oppositional our girl may have been, but she definitely wasn't defiant. She also wasn't naughty. There may not have seemed to be a rhyme or reason for her refusal to do the most basic of tasks when younger, but we soon learned that there was. She didn't refuse to wear socks just because she wanted to be awkward, or just because we'd asked her to; it was a sensory issue. She didn't get irrationally distressed when we walked a different way to nursery just to annoy us; her fear of not being in control and not knowing what was happening was the cause of that.

In fact, we've come to learn that many of her refusals are sensory led. Others are anxiety driven; going to new places or the fear of being sick in the car prevent us from getting her out as much as we'd like. Of course many children have these worries, but they are not autistic. The difference we could see (as we have one older girl who is not autistic) was the extreme distress which it would, and does, cause our younger girl, and the long-lasting knock-on effects if we choose to force the issue.

So back to my original question: what is the difference between ODD (Oppositional Defiant Disorder) and PDA (Pathological Demand Avoidance)?

This diagram below, made by the PDA Society (, shows that PDA falls within the circle of Autistic Spectrum Disorders, whereas ODD does not. There are other common co-morbid conditions in the green circle which likewise do not require an Autistic Spectrum Disorder diagnosis to be valid.

A child (or adult) can be given an ODD diagnosis without an autism diagnosis; however every child/adult diagnosed with PDA is autistic. There are various tests for Austistic Spectrum Disorder/Condition which can be found elsewhere online; the National Autistic Society is the best place to start looking for information on those.

Children with ODD are often described as having 'emotional and behavioural difficulties', or 'conduct problems'. They may have experienced difficult social environments and use behaviour as a means of attention, an outpouring for their anger or to hide their lack of self-worth. One difference often quoted between those with ODD or PDA is that children with ODD are less keen on embarrassing themselves in front of their peers; they are keen to fit in and can socialise in a typical way. Children with PDA on the other hand, are more likely to have unpredictable outbursts, even in front of their peers, and they tend to try and control all social interaction without understanding why their peers do not like it and then shun them.

It is possible to be autistic (whether that's Asperger Syndrome or Classic Autism) and have a co-morbid diagnosis of ODD. It is probably true to say that demand avoidance is there for most children with autism, especially when they are resistant to changes in routine. Children with PDA may enjoy some routine as it can lessen anxiety, but they are also keen to have control of their environment and so can be largely unpredictable. 'Jekyll and Hyde' personality is often mentioned in conjunction with PDA.

The diagram below shows the family of pervasive development disorders specifically, in a different way:
ODD is not mentioned above as this diagram is purely information on autistic spectrum disorders, which we have established ODD is not (ODD may be present in children/adults without ASD). There is crossover possible between most of these diagnoses however; you could for example, have a child diagnosed with Asperger Syndrome who shows PDA traits. It would be unlikely I feel (though certainly not impossible), to have a child diagnosed with PDA and ODD.

My worry is that some children are labelled ODD unnecessarily. There is a huge difference in the strategies which can be used successfully with either diagnosis and that's why I'd urge all parents to read up about all these conditions and what strategies there are.

My post Strategies for PDA gives a starting point, and I'd also suggest you check out Strategies listed on the PDA Society page, or Behavioural Strategies produced by Autism West Midlands. 

For ODD, take a look at Contact A Family's page. There is also a fantastic Facebook page called the Autism Discussion Page where many different strategies are suggested for varying situations and I thoroughly recommend it. There's also a good summary over on the Good Schools Guide website.

The term 'can't help won't' is often used to describe PDA. Traditional parenting methods, such as rewards and consequences, are not generally effective over a sustained period. They may work once or twice if all other conditions are favourable, but not when the need to avoid demands is strong. Maybe if you've tried the ODD strategies and they are not working, take a look at the PDA ones, or vice versa.

There's a more detailed post over on the PDA Guidance for those who crave further reading on this subject, and another post there which includes mention of Conduct Disorder.

This is a topic which is likely to continue to draw much further discussion over the coming years as it is not a clear cut area. I think you need to remember that parents are experts, and no-one knows your own child as well as you. Go with your gut instinct and what works for your child and your family. The diagnosis DOES matter as it can back up your choice of strategies and a diagnosis will help educate others, but what is immediately more important is making sure that all those around your child are using helpful and consistent strategies.

To follow me on my other social media channels, you can find me here:

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Pathological Demand Avoidance (PDA). What does it mean?

Last month, the lovely James (Dad to two autistic boys), who blogs at Stories about Autism, asked me if I'd write something to fit in with the variety of posts about autism he was publishing during Autism Awareness Month in April. I wrote about how Pathological Demand Avoidance has changed the way I parent.

Over the course of the past six years, I've learnt a lot about autism. I still don't know it all, and probably never will. Before our girl got her diagnosis though, I knew nothing about autism.

So I understand why other parents don't understand.

Why they judge me for the way I parent our girl.

Why they don't see the underlying cause of her behaviour. They can't see her hidden disability. Most of them don't know that she has a certain type of autism called Pathological Demand Avoidance (PDA for short).

Even if they do know, they don't realise what it means to live with this. My job, as her mother, is to explain to others what her difficulties and differences are, so that she is not judged unfairly.

PDA is an anxiety-driven need to be in control and to avoid everyday demands made by others. The more demands, the more anxiety.

Children with PDA tend to be constantly at the tipping point; the fear of expectation can often be enough to push them over the edge to a meltdown.

What we have had to do for our girl, is to remove as many demands as possible. Every day. So we don't impose adult-led routines on her - she doesn't have to brush her teeth if she doesn't want to, our bedtimes can be a bit flexible, and we don't force her to join in social occasions which she would find difficult.

We use PDA strategies to get through every day. We give choices, but not too many, and we don't use trigger demand words such as 'can't' or 'must' or 'need'.

We allow her the chance to say no, but we rarely say no to her - not outright at any rate. We get around it with phrases such as 'that's not a good idea/not going to work right now but maybe another time/maybe xyz would be work instead?'. We recognise her need for quiet time and we don't force the issue of homework - in her mind, work should be done at school.

We realise we are lucky though. Our PDA girl has an older sister, and we've never needed to parent her in this way. Traditional parenting, rewards, consequences, they all work for our eldest girl.

That's why we know that it's different for our youngest. That she has different challenges in life.

Others may think we are 'giving in' to her demanding behaviour, but we see it as helping reduce her anxiety. We wouldn't do it if we didn't need to.

Yes, it's hard work. It's mentally exhausting, trying to stay one step ahead, and thinking always in terms of Plan A, B, C and Z. It can be very isolating, not being able to take part in social occasions with others. It can be very stressful, barely being able to leave the house at all with her some weekends. It can be scary, wondering how we are going to get her to achieve to the best of her potential.

Treated with respect and understanding though, our girl manages to shine despite her anxiety and her difficulties. 

Thanks to the flexible attitudes of school staff, and plenty of sensory breaks, she manages to crawl her way through the school day and progress with her learning. I'm sure that she is leaving a huge impression on each and every person who she comes into contact with. Her classmates have been amazing and accepted her for who she is; I'm sure they will turn out to be better, more tolerant adults because of her.

She is different, not less. 

Every day is a challenge, and every day is one more chance to educate others, to make society a more accepting place.

May 15th is Pathological Demand Avoidance awareness day. For more detailed information on PDA, please visit and

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Tuesday, 10 May 2016

Little things can lead to breakdowns

She wouldn't get in the car.

She wouldn't get in the car, to go to the appointment with the nurse that I had made earlier that day.

That was all it took. All it took, for me to have a complete breakdown. In Sasha's own small, scared and tired words: 'I've never seen an adult cry that much before, mummy. I've never seen anyone cry that much.'

Nobody had died. I felt awful for not managing to hold the tears back until I wasn't in the same room as her. I just couldn't though. I don't really know where they came from; somewhere deep down, within. I couldn't stop them.

I don't recall ever crying that much, or in that way. I'm not generally prone to crying at all and can probably count on one hand the times I have (apart from the teenage years possibly, when everything seems much worse). When our beloved cat was run over at the start of this year I did cry. I cried lots, for a whole day, on and off, until my eyes were sore. That was different though. This time was chest-heaving, primitive in some sort of way.

It obviously wasn't just the car incident that prompted this. There's always a bigger story, isn't there? Little things build up to big things, and can ultimately lead to breakdowns. There doesn't always have to be one big obvious event which justifies the pain.

I'd called our surgery to ask for a doctor's appointment because our youngest girl was poorly. She'd started with a cough and cold on a Wednesday and had got progressively worse over the bank holiday weekend. By the following Wednesday the cough was more persistent, her temperature had been extremely high on and off and she had stopped eating food (although was luckily still drinking). Four days of not eating, and I was getting kind of scared to be honest. It's no exaggeration to say I could see the weight had dropped off her and her bones were prominent. So by the Thursday I was desperate to have her checked over, to make sure she didn't need antibiotics.

The last time she had been this poorly was four years ago, and that had ended up with the doctor diagnosing pneumonia and her having to go to A&E (read about that here) and have a drip put in to administer the drugs. Sasha doesn't do medicine, at all. I've talked about this before on my blog, in my post Poorly girl won't take medicine. We've been through a whole spectrum (excuse the pun) of ideas of how to get her to take medicine, but with no luck. She has a very limited diet and drinks only water, so there's no way of hiding the taste or smell from her. Now she's older, I think she would like to swallow a tablet, but can't bring herself to do it - she got as far as licking one, but that didn't help of course. It would almost be funny if it wasn't so serious.

Image is of Sasha four years ago, when she ended up in hospital because of pnemonia. It took five nurses to hold her down back then to get the cannula inserted.
So it came to the time for her appointment with the nurse, but we needed to go via school to pick up her older sister slightly early to make it there in time. I left plenty of time so she wasn't rushed, and I got her dressed upstairs as she got out of bed. By the the time we made it downstairs, she sat on the stairs and refused to move, saying she felt dizzy and she couldn't get in the car. I tried to help her up but she got very distressed and eventually crawled to the sofa where she could lie down after removing her clothes.

At nearly nine years old, she is quite tall, and despite having lost some weight, she is too heavy for me to carry properly even if she is willing. So there was no way I could get her in the car. I had to frantically try and call friends to find someone who could collect our eldest from school (as school weren't answering, she had no idea what was going on) and I was also trying to call the surgery to let them know that we wouldn't be making it in time for the appointment, but that I still needed her checking out. At this point our youngest was saying she would rather be taken in an ambulance to hospital - and that's despite her remembering what happened there the last time. So I figured she was extremely poorly.

The receptionists at the surgery were the straw that broke the camel's back. They discussed between themselves what they should say to me whilst forgetting to mute the phone - 'what is she expecting?' was just one of the comments I wasn't meant to hear. No understanding, at all. Even though they should have heard in my wobbly voice that I was feeling helpless and at breaking point, they weren't at all sympathetic, or helpful.

I eventually got a call back from the nurse, and a suggestion in a not particularly friendly tone that I should make it in to the surgery whenever possible, as long as it was before 6pm. Amazingly, I did manage to persuade Sasha into the car once her sister was home, but I honestly think that was only because she was so shocked at seeing me so upset. She was checked over and it appeared it was 'just' a particularly bad cough virus with very high temperatures, so I was relieved to not have to go to hospital but still concerned for her. Sasha is still recovering now; this was no run-of-the-mill cough and cold.

I'm not writing this for sympathy. Maybe in part to get it off my chest, yes, I'll own up to that. But also to highlight that every day is stressful when you have a child with this type of autism, PDA (Pathological Demand Avoidance). It doesn't help to label us as neurotic, over-protective mums. I still believe I'm extra lucky that I have an older girl who can be parented with standard methods, so I can see the difference myself. I'm acutely aware though that there are so many others out there who are being judged, unfairly, every day. Please, don't judge, do listen to parents/carers, and read between the lines. Many of them may be at that tipping point.

I will continue to write my blog to try and educate others about the daily challenges of living like this. I will also be popping into our old surgery with some much needed information for all the staff there.

For more information on autism please do visit and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit

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Monday, 9 May 2016

Bissell Revolution carpet cleaner Review

If you have some carpets that could do with a deep clean, there's a great carpet cleaner from Bissell called the Revolution which will do the job nicely without you having to rent a heavy machine from your local supermarket or pay for a company to come round and do it for you. The Bissell Revolution is lightweight and manouverable, and your carpets will dry in around an hour.

It's the sort of job that does need to be done every so often, especially if you have pets, or if you are renting your property. I gave the Bissell Revolution a trial on the carpets over at our new house (which we've not moved into yet - update on our house renovating coming soon!). The carpets there have been down for a good few years (I'm guessing, from the style of them), so it was about time. Just look at the colour (in the bottom half of the cleaner) of what came back out of this carpet!

The first thing I can say about this machine is that it is definitely lightweight and easy to push (half the weight of the leading rental machine, apparently). It's also extremely easy to fill and empty - the top section pulls up easily so you can fill it with clean water, and then it gently pushes back down. The bottom section tips forward so you can remove it easily; it's cleverly sealed so you don't spill any dirty water.

The machine comes supplied with cleaning fluid, and it's so simple to add - screw the top off, push it into the hole on the top of the machine, and squeeze. There are fill lines so you know how much to add. You can choose between deep clean or express for when you're in a hurry, and there is a hose attachment for doing the stairs or awkward-to-reach places.

I was definitely very impressed with the Bissell Revolution and wouldn't hesitate to recommend it to others. You can find more info on their Facebook page, or tweet Bissell with any questions!

Disclosure: We were sent the above product for the purpose of this review, but have not received payment. All the views expressed here are our own.

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Tuesday, 3 May 2016

Snowbility and Trespass review

Back at the start of the year, I was lucky to be offered some ski lessons with an organisation called Snowbility, and the chance to review a ski jacket from Trespass. The local Carers group had arranged the skiing for a group of carers and it was a great opportunity to go along and spend some time with others in similar positions whilst learning a new skill.

It was also the perfect time to try out my new ski jacket from Trespass. I'd heard of this great brand before, but I honestly wasn't aware they do such a wide range of ski wear and accessories. Not only that, but they do a huge range of camping equipment, bags, accessories, other clothing including fitness wear, and a good range for children too. The website is and it is very easy to navigate - simple headers with categories which make sense, and lovely big images for each product with a brilliant zoom facility so you can really see what you are getting.

They have plenty of women's ski jackets; My coat was the Slender Womens DLX jacket in a hot pink colour; if we do get around to taking the children skiing then I'll be happy to know that I'm easy for them to spot!

The coat is made from Tres-Tex stretch fabric which makes it flexible and comfy to wear, and quite soft to touch. It is fully windproof and has waterproof taped seams and a snowbreak under the hem - very useful if you are going to fall over in the snow (who, me?!). It has a layer of internal down padding and is lined with quilted panels, and the whole finish is of a very high quality.

There are three generous zipped waterproof pockets on the outside, plus another smaller one on the sleeve, and more on the inside - one zipped, one easy access netted. You can never have too many pockets in my opinion! It also has adjustable cuffs, a drawcord hem and an adjustable, zip-off hood. So many great features. I'm sure it helped me ski better.... early days, still got a lot to learn to improve technique, but at least I didn't fall over!

I'd heartily recommend that you go and check out the website, especially if you're thinking of camping this summer, as Trespass definitely have lots to offer. Standard delivery is free if you purchase over £50 of goods, and exchanges or returns to store are also free.

Snowbility is an organisation which was established to make a difference to individuals with additional needs, via snow sports sessions. At their base in The Snow Centre in Hemel Hempstead, they offer tailor-made, one-to-one sessions on the slopes and they aim is 'achieving potential through sport'. Thanks to their unique outlook and experience, particularly with those on the autistic spectrum, but also other disabilities, they are able to help with self-esteem, social communication skills and confidence. They were brilliant with our group of carers and I'm looking forward to taking the girls to see them soon. For more information, please do visit their website

Disclosure: We were sent the above product for the purpose of this review, but have not received payment. All the views expressed here are our own.

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Sunday, 1 May 2016

Shortlisted for a Blogging Award

Wow, I've been shortlisted in the BritMums Brilliance in Blogging Awards and I think I'm still a little bit in shock. Thank you so much to anybody who voted for me, love you all. So sorry I have to ask for a follow-up vote (or even your first vote if you didn't get round to it last time, it's not too late to join in now!)...


What made this awards announcement extra special for me, was that I've been placed in the Inspire category. My blog wasn't started with the aim of inspiring anybody; all I hoped for originally was a little more understanding of Sasha, and her condition, in the hope that it would help our little family.

I've been writing this blog for six years now, and in that time it has grown and developed just as we have as a family. My main focus is still to educate the world about Pathological Demand Avoidance (PDA), in order to help other families who live with this every day. People have approached me independently for advice and to say thank you for talking about it, and that means so much. Helping the families also helps the children of course, and that knowledge is what keeps me going. If I can persuade just one person, parent or professional, to 'change their lenses', then I feel I've achieved something (please, click that link, it's so worth it!).

The Inspire category is full of amazing ladies who have obviously all touched other people's lives in some way, and I'm proud to be on that list alongside them. They mostly have tens of thousands of followers on social media though and I really am 'small fry' in comparison. I'm not that hot on design and technology, and I never feel like I have a spare moment in any day, so I have to make the most of what I've got in terms of blogging. I've always felt like I'm writing about a very small, niche subject, which not everyone agrees with, and all I can do is gently persuade others that this is real. This is our life. My gut feeling is that there are so many more families who could be helped if they just knew about PDA.

This has been one of the hardest blog posts I've ever had to write; if it was on a bit of paper I'd have scrunched it up and thrown it away a hundred times. Although I do know that I won't win the category, a part of me would like to have that chance to make a brief acceptance speech; to explain why I write now, to have the chance to get PDA even more on everyone's radar, but most importantly to be able to say Thank You to everyone who has supported me, and Sasha, along the way. I already feel like a winner though; to have even made it onto the shortlist is a huge achievement for me. So thank you all for reading and voting.

Ten blogs have been chosen in the Inspire category for these BiBs awards and they now need to be whittled down to a Top Five before the evening of the Awards.
It would mean so very much to me to get into that Top Five, so please, if you can spare just a minute, please click on the badge below which will take you a page where you then click on 'vote for shortlisted blogs', then it's just your name to enter, scroll down to the Inspire heading and click on the dot where it says Steph's Two Girls.


Voting closes at midnight on the 18th May; apologies in advance for the times I will have to repeat this message for any busy people who intend to 'do it later' (as so often happens with me!).
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