Sunday, 30 October 2016

Travel with PDA

I'm not a fan of being down generally but I need to offload that it's been a difficult half term week here - travel was just one significant part of it. I'd planned nothing for the week ahead, as I felt both girls were exhausted after the first half of Autumn term. Eldest had started her new 'big' school and was happy but feeling slightly overwhelmed with it all, and youngest had put in a lot of effort to join in with her Year 5 class more of the time (see Writing Progress).

We received some terribly sad news just before the holidays started and it's been hard to get past that if I'm honest. The girls haven't been too affected by it, but for some reason Sasha found this whole week off school extremely hard, even though we didn't have much to do. It was an effort to persuade her to do anything, and we had one particularly tricky day where she was bored with what she loves doing - watching YouTube and playing electronic games. Every suggestion to do something else was met with a definite 'no' though. And the more I tried to suggest alternatives, the more irate she would get. It was a lose-lose situation.

As I felt the need to 'do' something with them outside of the house, I did agree to go to the Kidtropolis event in London on Tuesday. If you read my review of that (here) you'll see smiley pictures and what looks like the girls having lots of fun. Well, we did, and we didn't. The 'did' bits were fleeting at best. Of course that's the photos that I choose to take and show. As I think I've said before, pictures don't always tell the full story.

Steph and Sasha selfie on platform
Selfies followed by Snapchat as we waited for the next train... waiting can be fun, for ooh, up to 5 minutes max...

We travelled on three trains (well two and the DLR, not sure if that counts as a train?!) to get to the event, and only managed to stay there for less than an hour. Tamsin would have liked to stay longer but was very good about being dragged away from it before we had barely done anything. Sensory issues would have made the event all too much for Sasha even on a good day, I suspect, but she also struggled with the transport getting there. 

View from the front of the DLR
Riding the DLR - in the best seat, phew!

Any form of travelling has become more and more difficult over the years. Car journeys of up to 15 minutes are tolerated but any longer than that and we have to seriously consider if they are worth the stress. As both sets of grandparents live some distance away, we are sadly never able to visit as much as we'd like to. Visiting other friends can be even more difficult as unless it's somewhere we've been before, there's added stress for Sasha of being in a new environment.

Sasha has only ever been physically sick in a car once; she actually coped with it quite well at the time but she has never forgotten, and the thought it might happen again obviously plays on her mind. It's not just that though, it's motion sickness, and it's clear to see how unhappy and stressed it makes her. She can never fall asleep (unlike Tamsin, who can barely stay awake in a car!) but she gets to a point where she holds her head in her hands then doubles herself up.

Front seat of car not happy
About an hour in to a 2 hour car journey on motorways...
Front of car, doubled up
About an hour and 5 minutes in to a two hour car journey...
Whether it's Pathological Demand Avoidance or autism which makes what Sasha experiences different to the travel sickness which Tamsin has had in the past, I don't know. I do know that the anxiety levels are extreme; there's no joking her out of it or just saying 'it'll be OK'. She wears the travel wristbands and we've tried soothing potions on wrists, but if you've read previous blog posts of mine, you'll know that she doesn't take any medicine or pills. I'm not totally convinced they'd help if she did to be honest. This extreme anxiety is part of her disability, not a choice she is making.

In the car, we have to have her choice of music CD. Not just on long journeys, but every day. This tends to be very repetitive, and she will often need to repeat a particular track over and over to satisfy her need to hear the words properly. If anybody dares to speak, it's as if we have broken her concentration, and the track will need to be played again in its entirety. If her anxiety reaches a peak, she will turn the music off.

This is control. This plays a huge part in our life with PDA. We sit quietly in the car, not able to chat, make observations or play games in the way typical families do. We don't do small talk. Occasionally we'll forget the quiet rule and make a comment, only to be screamed at. It's not worth it. There was a period of time when we could play 'I Spy', but Sasha had to dictate what we were looking for and whose turn it was etc. We can't even do that any more though. I miss those games. 

So anyhow this weekend we made one of those rare journeys that we knew was worth the effort; to meet up with very special friends. I sat in the back with Tamsin, as we are instructed to do for any trip of distance, and very uncomfortable it is too for an adult. Even more so when you have to share the space with a new family member. 

Skeleton in back seat of car
Just your average family travelling up the motorway...

Meet Frevin, everybody. So called because Tamsin named him Fred but Sasha wanted Kevin. One win from this week - a compromise was suggested by Sasha! Frevin he shall be forever known as. 

Cat lying with skeleton
Lotus and Frevin. Best of mates.

Even the cat seems to have accepted him. Think we surprised a few people on the motorway though. 

See, I did my best to end on a good note. Happy Halloween everybody!

Spectrum Sunday

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Wednesday, 26 October 2016

Kidtropolis (Review)

As it's half term, I decided I should definitely try and persuade the girls that there's a whole exciting world outside our house, and so we headed off to Kidtropolis. It's fair to say that I had some misgivings about trying to attend such a big event with Sasha, but we had seen that the My Little Pony Friendship bus was going to be there and figured it was worth checking out.

The Kidtropolis event was held at London Excel - so the space was a very large exhibition hall. Their website will tell you the kind of activities going on - so much, from gaming stations to a rollerskate area, obstacle course, YouTuber shows, inflatable helter skelter, mini crazy golf, climbing wall and plenty of smaller toy stands with activities on.

Much to choose from you would think, but it appeared that the queues for the most fun things were so long that there were more children with long faces that happy ones... or maybe that was just the parents?!

 We wanted to go on the My Little Pony bus first but by the time we had got in through the door at five past two there was already a VERY long queue. I'm guessing they underestimated how many MLP fans there are out there! So we snapped a quick shot and decided to move on, right to the back of the hall where it would be quieter. That was where the Minecraft computers were - probably around 30 stations, but only 1 free as we walked up. We quickly spotted the Gamer Bus right next to that though, and as it appeared to have a short queue we thought we'd check it out. We must have made it there at the right time, as we only had to wait about 10 minutes before we were let on to explore the bus - the fact that there were support guys there keeping everyone informed about what would happen really helped. So the girls played Minecraft in there (honestly, it's not like they can't play it at home!!) and enjoyed it for 15-20 minutes.

  As we came out of the bus, there was a much bigger queue waiting to get on. We carried on walking round the hall and passed the stage at the back where some famous YouTuber was answering questions - on a very loud PA. There was also loud music playing for the roller disco. So it was at this point that Sasha decided she had had enough. We carried on walking round but she was really struggling with the noise - Tamsin would have loved to stay longer, and I'm sure if we'd made it to later in the day the queue for the MLP bus would have died down, but sadly too late for us.

Still. I made it out of the house with the girls, proved to them that there is a world outside these four walls, and reminded myself that big events are not a good idea for our youngest girl. For once, I don't think Tamsin would have missed out on much by not going.

Disclosure: we were gifted entry in exchange for a blog review. In all honesty I'm glad we didn't have to pay the price of entry, as for the little under an hour we were there it would definitely not have been good value! I do know of others who went and had a great day though, so, as with most things, it's worth trying and making your own mind up...
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Tuesday, 25 October 2016

Gel-a-Peel Design set (Review)

Sorry to use that C-word already, but as we are now on the run up to Christmas (61 sleeps), we will be bringing you a few gift ideas in the coming weeks - Gel-A-Peel is our first one.

Gel-a-peel design set

Tamsin tried this set out last week and I can confirm it kept her occupied for a good couple of hours. The kit contains 3 tubes of different colour gels, five designer tips, a tool to help clean and design, 16 different template designs, 2 hair clips and 2 earrings. Ours was the Sparkle kit with pinks and purples, but you can also get a neon version.

contents of gel-a-peel design set

The idea is that you squeeze the gel out onto the lines given on the templates to create all sorts of fashion accessories, from bracelets to earrings, brooches and hair clips. Or you can use the gels for any sort of general designs, the options are endless! Tamsin ended up with the following, with more gel left for another time:

Finished accessories from gel-a-peel design set

This is definitely a kit for those who like concentrating; you need to have quite a steady hand to do any sort of intricate design - although the designer nozzles do help a lot, and you can create star shapes or wavy designs quite easily for example. Practise makes perfect - the more you do it, the easier it gets. Patience is needed at the end too, as it can take several hours for a bracelet design to dry and be usable. Leaving overnight is probably preferable.

There is a sheet of acetate included to create your designs on, but Tamsin found this not so helpful as it had been folded in two and so wouldn't lie flat. Apparently if we'd have run it under warm water it would have recovered...She managed to improvise quite easily with a plastic food bag which did the job just as well.

These kits retail at around £14.99 which I feel is quite a fair price point, but my bargain hunter brain tells me you could look out for them in all the sales/offers which usually happen in the run up to Christmas... For lots of great design ideas, you can visit

Disclosure: we were sent this product for the purpose of this review; all thoughts and opinions are our own and we have retained full editorial control.
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Saturday, 22 October 2016

Testing for pupils with SEND

One of the joys (ahem) of being a parent of a child with Special Educational Needs and Disabilities (SEND) is visiting a Government Minister at Westminster and then getting an email through like the one I have tonight.

I am going to reproduce it here; for those in the know it'll probably make sense, for those not it may seem like double dutch. Which is kind of my point. It's not a short one, I'm sorry. Please just scroll on down to the bottom if you want the short version. Anyhow, here goes:


Information on government announcements over primary assessment, including the Rochford Review

The Secretary of State made an announcement about primary assessment yesterday that will be of interest to all those whose work affects pupils with SEND in primary schools. We set out details below, and would be grateful if you could forward this email please to anyone in your organisation with a particular interest in SEND. We have included further detail about the recommendations to the Government of the independent Rochford Review, including on the future of P Scales, on which we will consult early next year.

The full announcement can be accessed here: It includes the following text:
I am setting out steps to improve and simplify assessment arrangements. First, we have worked closely with the profession to improve the guidance for the moderation of teacher assessment. It is important that we have a consistent and reliable approach across England. This new guidance will be accompanied by mandatory training for local authority moderators. Second, the key stage 1 grammar, punctuation and spelling test will remain non-statutory for schools this year, with tests available for teachers to use if they choose. Third, we will not introduce statutory mathematics and reading resits on children’s arrival in year 7. Rather, we will focus on the steps needed to ensure a child catches up lost ground. High-quality resit papers will be made available for teachers to use if they wish, as part of their ongoing assessments. In addition, we will introduce a targeted package of support to make sure that struggling pupils are supported by teachers to catch up in year 7.
Whilst the steps set out above will make improvements in the current academic year, we also need to now set out a longer term, sustainable approach. Early in the new year we will launch a consultation on primary assessment and the implications for accountability. This will cover key issues, including the best starting point to measure the progress that children make in primary school, and the role and operation of teacher assessment. Whilst we take time to consult on assessment arrangements, the Early Years Foundation Stage Profile will remain in place for the 2017 to 2018 academic year.
Last year, the Government commissioned Diane Rochford to lead an expert review into the assessment of pupils working below the standard of the national curriculum tests and to make recommendations that ensure they have the opportunity to demonstrate attainment and progress at primary school. I am grateful for the work of Diane Rochford and her team and we are publishing their report today. Its recommendations will also form part of the consultation.
I look forward to engaging with parents, teachers and unions on these issues in the coming months.
Amongst the developments here that will be of particular relevance to pupils with SEND is the publication of the Rochford Review’s report. Further details of this are set out at the bottom of this e-mail.

The group’s recommendations to Government will be of interest to anyone involved in the use of P scales, so please do draw the issuing of the report and the Government’s intention to consult on the recommendations in it to the attention of relevant colleagues.

Please note that currently schools should continue to use the pre-key stage standards and P scales for the statutory assessment of pupils working below the standard of the national curriculum tests, pending decisions to be taken following the consultation early in the new year.

With thanks

0-25 SEND Unit
Department for Education

Publication of the report of the independent Rochford Review

In July 2015 the Minister for Schools established an independent review of statutory assessment arrangements for pupils working below the standard of national curriculum tests at key stages 1 and 2. The review group was chaired by Diane Rochford. The Rochford Review’s final report has now been published, and sets out the group’s recommendations to the Government. This follows the publication of the Rochford Review’s interim recommendations in December 2015.
The final report’s recommendations to Government include:
  • the removal of the statutory requirement to use P scales to assess pupils with SEND who are working below the standard
  • that the interim pre-key stage standards for pupils working below the standard of national curriculum tests are made permanent and extended to include all pupils engaged in subject-specific learning
  • that schools assess pupils’ development in all four areas of need outlined in the SEND Code of Practice, but statutory assessment for pupils who are not engaged in subject-specific learning should be limited to the area of cognition and learning
The recommendations are reproduced in full below.
We will consult on the report’s recommendations in early 2017, as part of a wider consultation on primary assessment. Final decisions will be made following that consultation. In the meantime schools should continue to use the pre-key stage standards and P scales for the statutory assessment of pupils working below the standard of the national curriculum tests.

The full recommendations contained in the report are as follows:

The review makes the following recommendations to government for the statutory assessment of pupils working below the standard of national curriculum tests at the end of key stages 1 and 2:
1.     The removal of the statutory requirement to assess pupils using P scales.
2.     The interim pre-key stage standards for pupils working below the standard of national curriculum tests are made permanent and extended to include all pupils engaged in subject-specific learning.
3.     Schools assess pupils’ development in all 4 areas of need outlined in the SEND Code of Practice, but statutory assessment for pupils who are not engaged in subject-specific learning should be limited to the area of cognition and learning.
4.     A statutory duty to assess pupils not engaged in subject-specific learning against the following 7 aspects of cognition and learning and report this to parents and carers:
·        responsiveness
·        curiosity
·        discovery
·        anticipation
·        persistence
·        initiation
·        investigation

5.     Following recommendation 4, schools should decide their own approach to making these assessments according to the curriculum they use and the needs of their pupils.
6.     Initial teacher training (ITT) and Continuing professional development (CPD) for staff in educational settings should reflect the need for teachers to have a greater understanding of assessing pupils working below the standard of national curriculum tests, including those pupils with SEND who are not engaged in subject-specific learning.
7.     Where there is demonstrable good practice in schools, those schools should actively share their expertise and practice with others. Schools in need of support should actively seek out and create links with those that can help to support them.
8.     Schools should work collaboratively to develop an understanding of good practice in assessing pupils working below the standard of national curriculum tests, particularly across different educational settings. Schools should support this by actively engaging in quality assurance, such as through school governance and peer review.
9.     There should be no requirement to submit assessment data on the 7 areas of cognition and learning to the DfE, but schools must be able to provide evidence to support a dialogue with parents and carers, inspectors, regional schools commissioners, local authorities, school governors and those engaged in peer review to ensure robust and effective accountability.
10.Further work should be done to consider the best way to support schools with assessing pupils with EAL.


See what I mean? It's a lot, isn't it? Especially at this time on a Friday night, right before half-term. I'm not altogether sure the wine is helping me decipher it. If you've got as far as reading this bit again, give yourself a pat on the back. And then sleep well and never think on it again - if it doesn't affect you, of course.

The thing is, it all sounds like good news, but I can't really be sure. Key stage 1 tests removed, and no resits in Year 7. There's a fair bit of that Edu-speak which I am just starting to get to grips with (I swore I'd never want to study again after my degree... I still don't want to).

Most of my readers would probably agree that the English school system seems to be in a total mess right now; too much testing at too young an age, of children in general. So when you add children with additional needs into the mix (and please, let's not forget about them, even though a recent Green paper tried to) the whole system appears unfit for purpose.

What I think I understand from the email above, is that there has been a realisation that these plans don't work for children with SEND. It sounds like they are putting the process on hold until further discussions have been had. Am I right? Someone please tell me I'm right.

When you have a child like ours, who is academically very able, but who has a spiky profile (seen commonly in autistic children) and who struggles with various areas of communication, processing and executive functions, testing is almost the last thing you want them to go through. Although on the other hand, testing would be good, to prove to those who don't see it that the mind is full of answers and imagination and all those other things which are under-estimated as a rule. Chance of getting our girl to sit any sort of test under same conditions as her peers (if at all) has been pretty much non-existent so far, so I'm not sure any of this will actually make a huge difference anyway....

Sasha is not, and is never likely to be, one of the masses. The school system should not be a 'one size fits all' type of place - children are individuals and everyone is unique. We should be building on strengths, not moulding sausages.

Of course testing is fine for the majority, and measuring progress is desirable for everybody, but it's how we go about it which matters. Sasha is a Year 5 pupil who is coming up to a major transition point in her life next year; it's so important we get this right for her. It doesn't help us or her when the goalposts are constantly moving. Any advice warmly welcomed.

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Monday, 17 October 2016

BAPS Blogging Awards

Exciting news - next year in May, the first ever BAPS blogging awards ceremony will be held in Birmingham.

BAPS stands for Bloody Awesome Parents awards, and covers all bloggers who are writing about a variety of issues, challenges and achievements in the SEND (Special Educational Needs and Disabilities) community. All busy people of course, so it's amazing any of us find time to sit and type in the first place!

I was 'right chuffed' (there's the Northern in me) to be asked to be a judge for these awards; I really care about the whole community and the amazing people in it. I'm sure the whole event will be emotional and heart warming, and a chance for many who don't often let their hair down to relax and be merry.

Even though I'm a judge, I can still be nominated for an award (just in case you were wondering!) but in all honesty I'm not holding my breath - I have no idea what category I'd put myself in, so I won't be disappointed if you don't vote for me.

The categories are:

  • Campaigning for Change
  • Promoting Positive Perception
  • SEND with a side dish of Humour
  • The truth about SEND
  • Newcomer
  • Practical Support for Families

Please do vote for someone in each category; there are so many great bloggers in this community and I know that being put forward for an award would mean so much to them. If you want some ideas, let me know - I've got loads, and have no idea how I'm going to whittle it down....

You can vote now by using this link:

Good Luck to everyone!

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Sunday, 16 October 2016

Siblings ~ October 2016

This month's Siblings photo is another quick snap - nearly the end of another year and I still haven't found the time to hone my photography skills... maybe in 2017 you'll see a vast improvement!

Steph's Two Girls Siblings October 2016

Eldest girl went on her first secondary school trip away this weekend - was just Friday morning to Saturday night, so only one night away. She had an amazing time, doing zip wires, abseiling, nightline, 3G swings and the like, but of course we all missed her. It was lovely to see the girls back together again and squashing each other laughing like only siblings can.

While we're on the siblings subject, I'm going to throw in an extra pic or two, as today is my younger brother's 40th birthday. So here's some oldies of us together (with my older brother) for you all to coo at....

The Me and Mine Project

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AEG Heat Pump Tumble Dryer T88595IS (Review)

I'll let you into a little secret; I've been wanting to try a new tumble dryer for a while now (ever since we were told our old one might catch fire...), so I was thrilled to be asked to review the AEG heat pump dryer model T88595IS.

AEG Tumble dryer T88585IS

It can be quite difficult to make decisions about large purchases before you bring them home, as you can't always tell what you won't like about it. You don't normally get to try them out and see how easy they are to use, or how well the functions work. So I put together a little video of the tumble dryer in action, explaining what it does and what I like about it. 

Not sure I'll be invited to work on a shopping channel any time soon, but at least it gives you some ideas if you're more of a fan of watching and listening rather than reading the info! I fully intended to be quite critical, as I wanted to show you anything that might have made me think it wasn't a good buy, but there was honestly nothing about this machine that I didn't like.

Top of the tick-list for me was the fact that it is very quiet - particularly good when you have to site the machine in your kitchen. This is down to the Heat Pump technology, which gives a gentler, lower temperature drying. This lower temperature also means that you don't burn your hands if you go in to retrieve clothes mid-cycle.

It may seem like a minor thing but I love how you can switch the buzzer on or off. Constant beeping from any machine drives me crazy personally, but I can imagine that others like it as a reminder that the machine needs to be unloaded. So it's good to have the option of on or off for something so basic. 

The window door and light so you can see what's inside are also winning features for me, as is the enclosed fluff filter. That avoids the clothes being covered in fluff as you pull them out of the machine - genius! The digital display is bright and simple to understand; The water compartment is easy to pull out, and selecting programmes is done via a dial, which avoids the need for lots of buttons.

In terms of programmes, there are several to choose from. You can have the clothes comes out as 'extra dry', 'cupboard dry' or 'iron dry' after picking cottons or synthetics. There's a 'silk' setting for drying hand washable silk, and a gentle drying 'wool' option for woollen items which carry the Woolmark handwash safe symbol. There's also settings for bed linen and duvets. 

Extra options include: Dry Plus where you can adjust how dry you'd like the clothes for each setting, Anti Crease where you can extend the intermittent tumble phase from 30 minutes to 90 minutes at the end of a cycle and Delay Start which enables the start of any programme to be delayed from 30 minutes to 20 hours. The steam function is a great addition and means you can refresh clothes with wrinkles, or which have gained extra unwanted smells (such as from cooking!). Easy to use; you just add the distilled water which is sent with the product. You also get a tube to be able to drain the water directly into a sink if you prefer.

The wording I've been given about the tumble action explains it much better than I can - 'the unique AbsoluteCareTM system in this tumble dryer adjusts the drum rotation speed or direction as well as temperatures, to tailor the drying process to different types of fabrics, allowing tumble drying of even very delicate items' and 'OptiSense saves time and energy, and prevents over-drying by adjusting the cycle to the size of the load'.

The tumble dryer is going to fit extremely well into our new house renovation - next job for me is to work on the latest update post showing what stage the builders are at now, but you can see how it was looking in September by visiting House Renovation Part 7.

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Thursday, 13 October 2016

Imagination with Skylanders Imaginators

Skylanders has been one of Sasha's particular interests over the past couple of years and she is hugely excited about the imminent release of the Skylanders Imaginators series.

In this picture, there are two elemental Traps (I think that's what she said...), the very colourful portal in the middle, a character Greg in yellow at bottom left, and Sasha as the character in pink at bottom right.

A few months ago, before we moved house and everything went a bit crazy, she treated me to some extra special pictures and her ideas of how the seventh version of Skylanders should look.

You may just notice the Wiggles and My Little Pony references.... wonder if Activision had plans for any hook-ups?!

This picture shows the super powers that this character (Greg) would have...

For her full explanation of it all, you should take a look at the video she wanted to make (an unusual occurrence for her to want to be in front of the camera for so long!):

If you read my recent post about writing progress you'll see that our girl has barely written anything for years. The words she wrote on these pictures were probably the most she'd done for a long time. Skylanders definitely fired up her imagination with the new Imaginators series and led her to this writing back in June, so thank you Activision!

I'm also so happy to be able to disprove that myth about all autistic children having no imagination....

Skylanders Superchargers
Sasha was delighted to receive a Superchargers pack after being ill in hospital

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Monday, 10 October 2016

Writing Progress

This week I have been blown away with the progress that Sasha has made. I've already posted a picture of page 1 of Sasha's story about the Ancient Greeks on my Facebook page.

Part 1 of a Greek God story

It didn't end here though. There were FOUR whole pages of A4 which Sasha worked on at various points during her school day.

I'm going to share a picture of part 2 with you; the rest I may save in case we decide to turn it into a novel in the future....

Part 2 of a Greek God story

To understand my excitement, you need to know that Sasha has barely written anything in school for the past four years or more, and pretty much nothing at home. We've figured that it's mostly because she is scared of how it looks (i.e. not perfect), or of getting spellings wrong; not because she doesn't know what to write or doesn't have the imagination. 

Of course, I knew she was capable of it and had that ability, I just didn't know if it would ever come out on paper. About this time last year, I attended a special event at her school. An initiative labelled 'Big Write' was taking place at school, and parents were invited in to share a morning writing with their children, learning about the methods they used.

I was in two minds as to whether to attend. Back then Sasha wasn't writing at all, and I couldn't really imagine what we would do in a hall surrounded by her peers who all seemed to be streets ahead in terms of putting pen to paper. Sasha was keen to join in though, so with some trepidation I agreed to join her there.

Parents were seated in the hall, next to their own child, and the teachers gave everyone practical tips on how to write, with examples of good adjectives and openers to use. Then they asked the children questions about different bits of text, giving them a microphone to answer into. I listened as Sasha's peers gave hugely mature and thoughtful answers about better phrasing and suggestions on more interesting paragraphs, Every time a question was asked, Sasha would stick her hand straight up. I squirmed a little as I honestly hoped they wouldn't choose her to answer in front of all the other children and adults; her talking isn't always clear or concise. I also worried that she'd get 'stage fright' and not actually be able to talk into the microphone at all.

This happened the first time they came to her; she wanted to answer but then passed the microphone to me out of fear. I was surprised when she then put up her hand to answer a different question, and I braced myself. The question was quite in depth, and I wasn't at all sure she knew what she would say if the teachers chose her.

What happened next amazed me. They passed the microphone to her and she answered brilliantly -eloquently, with great imagination and understanding. Meanwhile, I tried very unsuccessfully to hide, knowing the spotlight was on us both, as I had tears flooding down my face and I definitely didn't want her to be put off by them. They were tears of joy and pride, and of relief, but also tears of guilt as I silently berated myself for not believing it could happen. Of course we know that she is 'bright', but without written work it becomes quite difficult to explain or prove (I don't particularly like that word 'bright' or intelligent, but that's a whole other blog post). That day, she didn't write an awful lot in terms of what the other children were producing, but she did do what you can see in the below picture - and for her, that was a huge achievement back then.

Sentence of writing

We haven't seen much progress since, until this week when she apparently suddenly became prolific! The previous lack of writing is what had made me question whether Sasha would ever sit her SATs or GCSEs, and has been at the forefront of my mind as we start to consider secondary school for her. I'm under no illusion that 'traditional' GCSEs are the be-all and end-all, and I do understand that they still may not be possible for a whole host of reasons, but any writing is a huge step forward for our girl and I don't mind admitting I was as 'pleased as punch' to see this work this week.

More good news followed this weekend as Sasha had asked to do a trial at the drama club which her elder sister attends at a weekend. I had reservations around the fact that the session is 3 hours long and I figured it might be too much for Sasha in terms of attention. We turned up to try though I fully expected her to be bored after the first 20 minutes. Three hours of me sitting in the cafe later (and I hadn't even taken a book!), she came out extremely happy and wanting to go back every week! This is a huge step for us; until this term Sasha hasn't been able to attend any mainstream clubs without support. Just recently she has started at a cookery club after school which she is also loving and coping very well at, and now this drama club. Of course there's no guarantees, and either of these might stop working for a multitude of reasons, but we'll enjoy it while we can.

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Thursday, 6 October 2016

Challenging Behaviour and PDA

Girl showing Anxiety Overload
Anxiety Overload leads to 'freeze' rather than 'fight or flight' for our girl. Can easily be mistaken for general tiredness, laziness or stubbornness...

'Challenging behaviour' is a phrase which has been mentioned at quite a few of the events I've been to lately, and every time I hear it, I want to stand up and ask if anybody has considered Pathological Demand Avoidance (PDA) for those children.

To help others understand PDA, I often use this description from the PDA Society:

'The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. Many children avoid demands to some extent, but children with PDA do so to a far greater level than is considered usual. This is why it is called pathological.'

I'm planning to cover the second sentence above in a separate blog post but have left it in for now to explain the term. Some would have preferred PDA to be called Newson's Syndrome, as the 'pathological' seems to be often misunderstood, but demand avoidance alone doesn't explain the full extent of this condition. So Pathological Demand Avoidance is where we are at.

This basic chart shows that PDA is a sub-type of Autism Spectrum Disorder, in the same way that Asperger's Syndrome (AS) or classic autism are. There's a slight confusion over terms in society now, as the word 'autism' seems to have become an umbrella term for ASDs. So it may be said that 'PDA is a type of autism', but what is actually meant is that PDA is a type of ASD.

Graph showing where PDA sits relating to ASD

There are few children or adults with a straight forward PDA diagnosis so far, mainly because the term is relatively 'new' in medical terms. I say relatively, because this term has in fact been around since the 1980s when Elizabeth Newson published early research on PDA. If we compare that timescale to that of Asperger's Syndrome though, which was first diagnosed in 1944, but not recognised in diagnostic manuals until the 1990s, then we probably still have a few more years to go for wider recognition of PDA.

I strongly believe that there are more children out there who should be diagnosed with PDA, and that many of them would currently be classed as children with challenging behaviour. Some will have been given a diagnosis of ODD (Oppositional Defiant Disorder) and I discuss that more in a previous post (The Difference between ODD and PDA). 

The truth is that the more you try and make a child with PDA fit into the system, by following typical parenting or education strategies, the more likely they are to feel forced into behaviour which challenges. 

I'm not suggesting that every child classed as 'challenging' should have a PDA diagnosis, but I am convinced that more children have it than has yet been acknowledged. 

Of course, as with all types of Autism Spectrum Disorder, there's a spectrum (the clue is in the name). That doesn't mean that everyone of us is on that particular spectrum (I'm not a fan of the 'we're all a little bit autistic' phrase that I've heard before, and there's a great blog post over at Unstrange Mind which describes it perfectly) but it does mean that some children with PDA are able to hide their difficulties in school and work extra hard to conform when there. What that leads to though, is the pressure cooker effect - as soon as they are home, the lid flies off because they have to release that stress and anxiety somehow. For some, that can happen at the school gate on their way out; for others the comfort of home is what can enable them to feel comfortable enough to let rip.

I've always counted myself lucky that our girl is 'constant'. She doesn't mask at school, her struggles are obvious. She's not violent or aggressive when unhappy or anxious; instead of 'fight or flight' she tends to freeze. As a young child she would 'mushroom' - by that I mean crouch down on the floor and become as heavy as a sack of potatoes. These days she is more likely to stay sitting at her desk but with her head on the table, as a way of withdrawing from it all when it becomes too much. On the school days which have not gone so well for any reason, I have to go in and collect her from the classroom, where I will find her in this position. It always seems strange that she doesn't want to just run out of the school doors to get home where she knows everything will be OK and comforting, but it's as if she is rendered incapable of functioning properly.

The children who struggle with the build up of everyday demands and who lash out are seen as challenging. People wonder how to 'deal with' them. I'm a strong believer in 'all behaviour is a form of communication'. 

It's whatever has caused that behaviour in the first place which needs to be understood and worked on. 

In the case of PDA, there are different strategies to use which will be totally alien to most parents - going round my head is that famous line 'this is parenting, Jim, but not as we know it'. Typical parenting strategies involve showing the child that the parent is in control. With PDA, the child needs to feel like they are the ones in control - which involves some pretty exhausting forward planning and game playing (that those with PDA must never find out about....). I'll come back to strategies another time, as I could fill pages with them, but for some quick reading try the PDA Society suggestions, or the Autism West Midlands advice.

A man who has spent a lot of time with children and young adults who have behaviour which challenges is Dr. Ross Greene. His belief is that kids do well if they can. There are a lot of free resources on his website which I'd heartily recommend - start with the Walking Tour for Parents or for Educators. His strategies are not specifically for those with PDA, and many can benefit from them. As adults, I believe we need to look at the cause a bit more often and help find a solution, rather than opt for the generic carrot and stick approach which really doesn't work for a whole group of children.

If you know of a child with challenging behaviour (and please try to refrain from using that word 'naughty'), then maybe pass on information about PDA and Dr. Ross Greene to whoever works or lives with them. It might just change the life of the child and of all those involved with them. The PDA Society website is the first place I'd point them to, and for young children up to the end of primary school age there's a great booklet to download here. I'm always open to questions too!

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