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Monday, 28 September 2015

Baking update. Cupcake special!

It's been a while since I blogged about my second love (after my family) so I thought I'd better write a quick post now. The reason 'why' will become clear in the following days (she says with a HUGE grin on her face).

I don't know how many people know, other than those at school who've previously seen me stagger through the gates laden down, but I do love a bit of baking.

So I'm shamelessly pulling together a picture post of some of my efforts in the past, all of which can no doubt be improved upon. I try to do themed birthday cakes for the girls each year, but cupcakes are my true love. Personally I don't know how anyone can eat them with all that buttercream piled up on top, but I know they do. Either that or they just tell me they do so as not to hurt my feelings.....

Anyhow, I still need to work on my photography skills so apologies for the lack of style and arrangement, but here in no particular order are some of the cupcakes I've made:








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Thursday, 24 September 2015

PDA Society Conference; Truly Inspiring!

Wow, wow, wow. Yesterday the PDA Society held their first ever conference for parents and carers of children with Pathological Demand Avoidance (PDA).

Over 240 adults attended, from all walks of life, but with one thing in common; the desire to learn and understand more about Pathological Demand Avoidance. The hugely positive feedback received by the team all day during and after the event suggests that the objective was achieved, and in style!


Lucy (my roomie) and I arrived the day before the event to help out, but to be honest everything had been organised so brilliantly, from the individualised planner check-in sheets, to the table plans (genius to try and group families from the same geographical areas together!), and down to the lovely finishing touches such as ribbons at every place setting, that we knew there wouldn't be any major problems on the day.

The conference kicked off with a slide show of PDA family pictures along to the music track by Kelly Clarkson - 'what doesn't kill you makes you Stronger'. The theme of the conference was 'Stronger Together'. Committee members came up with the great idea to provide paper chains on all tables; attendees were then asked to write on them anything which made them stronger. Examples such as family members, or coffee and biscuits were given - hubby of Living Life Our Way blog writer suggested 'days like these' which I thought summed the day up beautifully.

Founder member of the PDA Society, Margo Duncan, took to the stage to introduce the first speaker; Phil Christie, the man who worked with Elizabeth Newson and who knows all there is to know about PDA. His speech theme was the 'State of the Nation' and he talked through a short history of how we have got to this conference, followed by discussing where PDA sits under the banner of Pervasive Development Disorders* (now known as Autism Spectrum Disorders, although this is not a term which is in the manuals) and then onto looking at diagnostic criteria for PDA (listed here on the PDA Society website). He noted how the National Autistic Society has recently updated its information, agreeing that PDA is best understood as one of the Autism Spectrum Disorders.
(*that diagram can be found in the list of extra resources here or on my last blog post discussing PDA and ODD)

He was followed by a very positive presentation on Resilience for Life by Dr Jo Clarke, who is apparently the only person in the UK who is trained and licensed to present The Explosive Child Strategies. I suspect she will be in huge demand for a long time to come! Other speakers included Jane Sherwin, who wrote the book My Daughter Is Not Naughty and Neville Starnes, producer of the Blue Millicent videos which have helped so many. Both of these individuals are experts in PDA; I heard so many comments saying each of them was inspiring and that sharing their stories has really helped others. A special shout-out (did I really just use those words?!) from me to Max who appeared on the Born Naughty programme recently; I applaud her loudly for also sharing her story very publicly and it was such a pleasure to meet her finally.

In between these speeches there were nine different workshops running during three different session times. They were: Resilience, De-escalation techniques, Education Law (thanks to the wonderful Evelyn Ashford), Sensory Issues, Siblings, Sleep, Working with schools (mainstream) and working with schools (specialist). From what I could see, nearly every session in every time slot was full, and I think thanks to some careful planning, most parents were able to see the ones they had the most interest in (resilience and de-escalation featuring highly at the top of people's lists!).

At the end of the day, the 'Stronger Together' paper chains were linked together and a second video was shown, showing comments from people who wanted to thank others who had helped them along their PDA journey. The paper chains were then sent over heads from the front to the back of the room; an inspired touch which I know lots of attendees will remember for a long time.


Well done to the venue (Park Inn by Radisson in Northampton) which was another great choice; plenty of tea, coffee and snacks, delicious hot and cold buffet and the hotel conference staff were all very willing to help set up exactly as needed as well as deal with last minute matters quickly.

All the committee names and those who helped to start the PDA Society (formerly PDA Contact Group) were mentioned in the video several times over, and all the speakers, but also others such as Jo Jones, Cathy May and ADD-vance, even CAHMS Doncaster which is pretty amazing! It's so good to hear that several professionals are already on board with PDA and after the conference I'm sure more will follow suit.

'It's so good to just be in a room with other parents who get it' is a phrase that has been repeated many times. It may sound dramatic but to not feel alone and to not have your parenting skills challenged but to have them accepted by so many others who understand and who are in the same position is actually life-changing.

The whole event was so inspirational, especially considering the PDA Society is entirely made up of parents who are volunteers and who share the stresses of having children with PDA. I think we should give the team a few days rest before they are asked to start planning the next one..... Special thanks to the committee members Paula, Debra, Tracy, Mark, Neville, Rebecca and Margo who all worked so hard to make this the truly amazing day that it was.



Linking up to the lovely Vic who I am sure will like this, over at #PoCoLo :)

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Sunday, 20 September 2015

Challenging Behaviour: ODD or PDA?

At our very first meeting with a paediatrician, the word 'oppositional' was used in reference to our younger daughter. 

Her diagnosis is written as:
1. Autistic Spectrum Disorder and 2. Oppositional behaviours/pathological demand avoidance behaviours.



Much as I loved our paediatrician for just 'getting it' (and by that I mean spotting the signs of autism straight away), and for giving us a quick diagnosis (not that I was pushing for one, it was all somewhat of a surprise to me), this diagnosis is what I would actually call sitting on the fence. Reasons for that are slightly complicated, but in a nutshell PDA is a relatively new diagnosis in medical terms and so not 'in the manuals' for diagnoses.

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.

We were 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.

Oppositional she 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, and the difference to us (having one older child who is also 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 (www.pdasociety.org.uk), 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 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. 
For PDA, I'd start with 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.

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 blog Understanding PDA 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.





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Thursday, 17 September 2015

It's Oh So Quiet.... sssshhhh!

I hardly dare say this... *I'm whispering in my head*... but things are going O-K. For now. I'll take OK for now.

Considering we have just sold our house and moved home, into a slightly smaller rental property, only a week after Back To School, things are ticking along rather nicely.

Yes, the house is a tip, and yes, some items are still lost in a box somewhere, and yes, we can't see as much of the floor as we'd like to, BUT all is relatively calm. The girls are loving the new musical doorbell and are generally happy.




I don't really like saying it out loud, as I'm sure I'll jinx everything. It's important to stop sometimes though and appreciate everything you have. I know how lucky we are, and I'm grateful.

I've been on the receiving end of a rant from another parent this week, because I couldn't offer her a space on my upcoming course to help parents of children with PDA. It's difficult to take, but I've had to let it go and shake it off (wondering if I can get any more songs in here) as I understand her desperation but know how much the other parents already signed up and all those on the wait list really need the support too. I'd love to help them all and will try my best.

The return to school has gone amazingly well. Sophie seems to have decided that Year 4 would be different, and better. I think it's helped massively that we have a very switched-on, experienced TA now working with her a fair amount of the time, and I'm also very pleased with the class teacher who is taking everything in her stride so far. Sophie will never be one of those children who can mask her difficulties and blend into the background, but she has made huge strides into controlling her emotions and knowing her own limits. 

A Circle of Friends has been set up for her now - will post more on this another time. It was lovely to hear that so many of her peers wanted to help her in this way and we'll be watching to see how this works going forward. It has thrown up some questions, in that the meetings about this will have probably made Sophie start to realise that she's different, but we haven't talked about that in any detail at home yet. Barely at all in fact, as we've been waiting for her questions on why she needs extra support etc but none have yet come.....

Year 4 have weekly swimming lessons and as Sophie loves the water, she has been super excited and looking forward to these all summer. Last week I went along to the first session, to be on hand in case the excitement and the reality didn't match up. We had done a fair amount of preparation, which definitely helped, and the TA stayed with her poolside which was also a big plus. I was probably pegged as an over-anxious parent, but to be honest I'd rather that than drop her in at the deep end (pun intended, excuse me)! It all went swimmingly well (sorry, can't help myself) until she came out and was very tired and hungry. She just about managed to get through that though and I'm sitting here waiting to see what the feedback from the second session today will be. My heart did a little leap this morning when she told me that I didn't need to go and be there this week; she is certainly striving for independence already and I'm very proud of her for trying!

So all in all, life is good. Apart from the fact that I don't have enough time to blog regularly, and I miss it! There's always so much more to say. 



Tomorrow is the annual Mad Blog Awards ceremony for bloggers, and whilst I am not up for an award, or having to do a flashmob this year, I've been invited along by the wonderful Raisie Bay and it's a chance for me to enjoy some 'grown-up' time. Woo hoo! Wonder if there'll be a surfboard this year, or a Giant Operation? Hoping the fab Dr.Ranj is going to show up again too... but the best bit is catching up with lots of other amazing bloggers. Bring it on.






Linking up with Small Steps Amazing Achievements over at Autism Mumma this week, as I am so proud of my girl for coping with all the changes which have been thrown at her recently. No mean feat for a child with autism.

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Friday, 4 September 2015

‪#‎SaveSyriasChildren‬

This is such a difficult post to write.

It's not very often that I see things in black and white. I'm much more of a colour sort of person. Meaning that I'm not opinionated, or political, and I do tend to see both sides of every story.

Joining in with this #SaveSyriasChildren campaign however, was very black and white to me. No reason not to. Anything we CAN do to help, WILL help.

Despite the fact it has been going on for quite some time, I don't think enough of us knew enough about Syria before this week. There is plenty of information in this article with quick facts, and please do also look at www.savethechildren.org.uk/save-syria-children.
The headline figure is that more than 15 million people are in need of assistance inside and outside Syria.

Nobody could fail to be moved by THAT photo though. This is where I see social media changing lives for the better. Visually impactful, the photo sticks in the mind.

We all know that any life drowned is one too many, but of course it hits home more when it's a child. A child who could do nothing to save themselves.

We can do something about it. There are hundreds of charities and small groups now collecting; money, warm clothes, blankets, toiletries, anything. 

Donate if you can, raise awareness if you can, both if you can. Whatever; just don't turn a blind eye and forget about it. We are all human. We all deserve to be on this planet and to be treated right, regardless of where we were born.

'It could have been me'







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Gameband + Minecraft Review

So I don't know about you, but our summer holidays have definitely had their fair share of Minecraft days sprinkled generously throughout (note: we had the usual UK summer weather to contend with).

Luckily, we found out fairly early on that there is a fab new product on the market, the Gameband + Minecraft, and we were offered the chance to review one. Oh yes pretty please, we said (or words to that effect).


Gameband Minecraft

The Gameband + Minecraft is a wearable device, which means it's a bit like having a USB drive on a wristband. It enables you to save Minecraft worlds built on your own computer and take them with you to play on other computers, maybe round at a friend's house (that's what kids these days do for entertainment apparently. I'm relieved to know it's not just mine who are hooked).

You simply plug the band into the USB port and if your friend has Minecraft loaded on their own computer then you can share your world design and both work on it at the same time. If you're at a house of non-Minecrafters then a) you need to educate them, which this band can help to do, and b) you can plug your band in to any Windows PC or a Mac, and still play on your own Minecraft world, even without the main programme. This means no more pain of holidays without Minecraft!


Minecraft Gameband

The Gameband + Minecraft saves your worlds as you work and also backs them up onto cloud servers at the same time. If you ever lost it, you can simply order a replacement which will have all your data saved ready to go again. 


Minecraft Gameband

That's not all it is though of course.. It's a watch and a fashion accessory (!) which can be personalised. It comes with the PixelFurnace app pre-loaded and the first thing our 10 year old girl wanted to do was programme the band to show her own design. You get a choice of four, which you can cycle through by pressing a button. Our girl also has her initials and a message about Miners flashing up, apart from the monster (?!) in this pic:


I love that she could easily follow the instructions to do that all by herself; it gave her a great sense of achievement. The band is made from durable plastic and stainless steel, and is scratch resistant and splashproof.

The Gameband + Minecraft is out now, retailing at £69.99, and available at Currys. For much more info on this fab product please do head over to www.gameband.com.


Disclosure: we were sent this product for the purpose of this review. All opinions expressed are honest and our own.




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