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Thursday, 15 March 2018

Siblings {March 2018}

It's been a pretty exciting month here, in the run up to Sasha starting at her new school. Tamsin has been excited for her too, and it's been lovely to see the support from her big sis.
Stephs Two Girls March 2018

Today was the day, and I was of course super happy to be able to snap a pic (or two) of my two school girls together! For some reason my trusty iPhone let me down a bit this month though; the picture quality seems particularly bad, but the smiles more than make up for it I think. Roll on the warm weather when we can get back to lovely sunny photos outside though!

Last month was all about Tamsin's fab performance in the Gang Show and this month is all about Sasha's return to school, which I'm pleased to report she has managed with style. Today went really well and afterwards Sasha told me quite a lot about her day - she particularly enjoyed the school dinner of potatoes, chicken and jelly, just like what she used to eat at her old school! 

So a great start today, keeping my fingers tightly crossed that I have two school girls for a long while to come....

The Siblings Project - Dear Beautiful

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Wednesday, 14 March 2018

Our PDA Story {Week 30}

So we are already up to Week 30 in the 'Our PDA Story' series, I can hardly believe it. This series started over two years ago and is all about sharing experiences of other families living with Pathological Demand Avoidance. For other families, it's good to know you are not alone in having to find a different kind of way around life.

My blog was started over eight years ago when our youngest girl received a diagnosis of autism spectrum disorder; after several months of research and getting to know our girl, we realised it was a sub-type called Pathological Demand Avoidance (PDA) which she had.

The writer of this post today also has a girl with PDA; the ratio of girls to boys with PDA is estimated to be one girl for every boy (unlike classic autism, which is said to be one girl for every four boys). As has been the case most of the writers in this series, I can draw many parallels between our lives, but as always there are some differences too. 

Danielle is a relative newcomer to the blogging world and sharing her story but she does have her own blog page at www.pdaparenting.com which I'd love you to go and visit - and check out the bottom of the post for how you can help PDA recognition by voting for her in the BAPS Blog Awards!


To talk about what it’s like to live with a child with PDA is a very difficult thing to do - you almost need to live a day with us to fully understand how it controls every aspect of your life.

To watch your child crumble away in front of your very eyes, regressing by a mental barrier that prevents them from engaging in almost everything, well it’s heartbreaking to say the least.  

To explain that they avoid demands sounds as if they just don’t like the word no.   But when you live with someone whose response system shuts down and they cannot perform daily tasks like drinking and going to the toilet, then you begin to understand why it is described as pathological.

It stops my child from doing absolutely everything that she wants to do - a suggestion of the park and she completely freezes or erupts into a violent meltdown.

She told me, aged four, that she hated her brain and she shouldn’t have been born.

Her words are better than mine to start our story.

My daughter was an extremely happy baby and a joy to be around - she had an infectious laugh that drew in the world around her.  Early on she exhibited a need to control but this was manageable.

We did things normal families do like going to play groups and visits to the zoo - I had another baby and it felt like parenting came naturally to me.

Life felt good.

As time passed on meltdowns would happen if was time to get ready and if it was time to leave home.  I can remember the battles we had if it was time to stop something she was doing - on occasion she even urinated on the floor or forced herself to vomit on the transition.

However, I kind of manoeuvred through these incidents and the good moments outweighed the bad.

She was just strong willed everyone kept telling me - but I felt there was more.  I kept going with Jo Frost style parenting hoping I would see some improvements over time but it made things worse.

Everything changed when my daughter started reception and we were catapulted into crisis almost instantly.

The early distress signs that she was anxious and autistic were overlooked and my parenting was blamed.  

I had raised concerns on numerous occasions regarding her emotional and social understanding, yet this had been disregarded (something I later found out was breaking the SEN code of practice).  The assumption was that she was ‘naughty’ and I was told by the teacher that I was overcompensating.

We hit a block wall with this placement and moved schools, which followed by an email from the headteacher, “good luck curbing her behaviour traits!”  We had been so misunderstood and my confidence in parenting took a massive knock.

A new placement started and the honeymoon period only lasted two weeks.  We were back to disruptive behaviours (but on a grander scale), exclusions and school refusals.

Unbeknownst to me, communication had happened between the two schools and we were rumoured to be a problematic family.   Instead of being a fresh start, we were almost destined to fail.

A few weeks into the move and the reception teacher and TA tried their very best with limited resources and PDA’er was put onto a reduced timetable - she was only allowed in at lunch!

I was told by senior management that she could not be in school as they did not have the resources to cover her - eventually she was allowed in whilst my mum was supporting voluntarily as her 1:1 helper.  If at all my mum left the site then we would get a phone call home to collect her (often undocumented as an informal exclusion).

We had entered a continuum of school refusals, violent outbursts, exclusions and re-integration meetings.  We all crashed and could not see a way out. Her coping strategies ultimately meant that she could come back home to me – a place she wanted to be and in her red mist she would attack staff/children or damage property.  Her ‘fight or flight’ response system was continuously being used and finally she succeeded in absconding from school on many occasions.

I suggested the word autism but it was dismissed by mostly everyone.  She made good eye contact and had persuasive communication and was just viewed as a child with poor behaviour.

Finally I came across the profile of PDA (Pathological Demand Avoidance) and I had the light bulb moment that so many parents talk of.  It was as if the words were written to describe her personally - I realised it was down to anxiety that was leading her need to control.  I always knew she just wasn’t choosing to be defiant.

A referral was made for an EP (Educational Psychologist) to observe her at school.  This was also refused.

Like so many times though this journey we have to fight and fight to access any appropriate services.

Eventually, a report was written to advise school of her needs, but with no understanding of a PDA profile, it was not fit for purpose.

With no education happening and a school wrongly saying they could only help when she had a diagnosis, I began to persistently call to see a paediatrician.

This paid off and after many complaints we were given an emergency appointment.

Enough evidence was gathered following this for her to be diagnosed as having an Autism Spectrum Disorder (ASD).  After much negotiation the words ‘with Significant Demand Avoidance’ were added to the diagnosis.

The diagnosis did not change anything and the school environment could not adapt enough to include her needs.

The daily exclusions took a toll on my daughter’s self-esteem; she would cry at home “I just want to be good mummy.”

So much trauma occurred around going to school that it had a massive effect on my her mental health - she eventually had a breakdown aged just five years old.

I can't even write those words without thinking that I must be writing about someone else’s life.

How did that even happen?

She had been so misunderstood and failed by an entire system that should have been there to support her that she turned not only on herself but on those around her.

The day I got her admitted to hospital was shortly after her telling me she wanted to die and attempting to find dangerous ways to harm her life.

Our whole family hit crisis point and our marriage collapsed - we were so broken.

I was crying inside, we had just needed help, but it was too late.   It will be shocking to know that this was then used as a reason behind her behaviour.

The school and the local authority began ‘actively’ encouraging me to elect to home educate her or to put her in a behavioural unit.

I stood my ground - this was discrimination and neglect.

A month later she was then permanently excluded from school.

My whole life crashed at that very moment and I felt so disconnected to the rest of society.

So I built up the courage to fight back and took the exclusion to an Independent Review Panel.  It was an arduous battle but worth every moment to see that statement lifted from her school record.

We are in the process now of reintegrating into mainstream school and it is such slow and tiny steps.   But this is a placement where she is wanted and it is the best chance we have to rectify the damage of the past.  It may or may not be successful, there are no guarantees. The fact that she is being warmly welcomed and the desire to help break down those barriers to succeed is extremely liberating.

The willingness to work collaboratively between parent and school is being shown in such an inspiring way that I hope other schools will adopt this inclusive ethos.  The role of the senior leadership team is pivotal in this process and this team are restoring my faith in what currently is a very fragmented educational system.

Parenting a child with PDA is so extreme - it affects the whole family.   

There have been days when I don’t know how I was still left standing.  

The times when I needed to run and the darker moments when the urge gets so strong to throw my head against a wall.  I don’t know why that happens and it makes me petrified of the impact on my own mental health.

The blog I write has been my catharsis; it leads to snippets of hope again.

Connecting and supporting gives me a purpose again.  It keeps me grounded.

I hope that anyone reading this will share our story - it may offer some hope to another parent and it may just prevent another child from being so misunderstood.

Thank you for reading!


Danielle's brilliant blog is over at www.pdaparenting.com, and if you've enjoyed reading this, it would be great if you could cast a vote for her in the BAPS Awards (Bloody Awesome Parents - for more info see my post here). She is a finalist in the newcomer section and it would be brilliant to see a fellow mum who writes about PDA gain some recognition, both for her blog and for PDA! You can vote here but please do it before the 16th March: BAPS Newcomer 2018
Thanks for taking the time to read. It definitely helps if this post is shared further; in groups, on Facebook or Twitter, any way you choose. Just one more person reading who may not have otherwise seen it will help spread understanding, and it's surprising how many people have still not heard about Pathological Demand Avoidance. 

Please do leave comments below as the writers are brave sharing their stories and definitely appreciate support; for more reading about Pathological Demand Avoidance, please see my blog post 'Challenging Behaviour and PDA'. 

PDA can sometimes be mistaken for ODD (Oppositional Defiance Disorder); this post of mine explains the difference between PDA and ODD

To read more examples of living with PDA, visit This is our PDA story. This includes experiences of parents of girls, boys, young and old, and also includes some from other adults diagnosed with PDA. 

If you feel up to sharing your experiences with my readers to help spread understanding (this can be anonymously), please email me at stephstwogirls@gmail.com. 

The PDA Society website is full of useful information and resources, and more good information can also be found on the PDA Resource

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 and I will be there helping out. Please do stop me and say hello if you are there!

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Tuesday, 13 March 2018

Drama club trial

Last Saturday, I got to enjoy the highs and lows of sitting in a coffee shop.
coffee in coffee shop

Yes, I know that sounds a little odd. Lots of people would not register going to a coffee shop as an exciting event, but for me, it is extremely unusual. Thirteen years ago, when our eldest was born, I did visit some local ones a handful of times, but over the years it has become a very rare activity indeed.

I’d love to say I was relaxing in that coffee shop at the weekend, but having just walked out of the building where I’d left Sasha, I was slightly on edge. She was trying a new drama club session. It’s a fully inclusive group, which of course means that it’s generally only children with additional needs who turn up.

Sasha was full of beans, bouncing around and eager to join in. There were other children there who were not so keen and I really felt for the mum whose children would not let go of her. I remembered when my eldest girl was younger and not confident or comfortable enough to let go of my hand. It never really happened with Sasha; the clinging wasn't there, but neither was the ability or desire to sit and pay attention to a group leader. All sorts of toddler groups which we had tried and enjoyed with our eldest dwindled to nothing.

This was not a toddler group however, it was drama aimed at slightly older children. There was a variety of ages and needs in the room; Sasha started off in a good mood, full of fun, playing tag with some younger boys. When she wanted the game to end and they didn’t however, she got frustrated with the one young boy who still wanted to follow her and be close to her, asking him to 'just leave me alone!'. Luckily the session leaders were very good and picked up on that quickly. They had a variety of strategies to make sure everyone was interested and that they joined in for as much of the time as possible. I had total admiration for how hard they were working!

I stood at the back of the room at first, watching what was going on and trying to gauge whether Sasha was enjoying it. I was surprised at how enthusiastic she was, given that our journey there had been slightly fraught. This drama group is in the next big town along from ours, an 18 minute drive away. After ten minutes of driving there, Sasha started to get very stressed and upset and declared it was too far - ‘it’s not taking 10 minutes, it’s 20 hours!’. She wasn’t convinced she wanted to carry on with our journey, and I had to gently persuade her on the grounds that if the drama class was fun, it would be worth it.

So I was surprised, but happy that everything seemed to be going so well, and when Sasha told me I could leave, I waited a bit longer, until she practically begged me to go. The room they were in was a basement room with no chairs around either inside or outside the building, and that's how I ended up in a coffee shop across the road.

Whilst enjoying my tea, I nervously wondered how it was going. Whilst I thought Sasha would enjoy the drama side of it all, I did think that the variety of characters in the room all calling out and doing their own thing might cause her some concern.

I wandered back over to collect Sasha at the end of the session and as the door opened, my heart sank. Sasha was on the floor, in what I call her 'mushroom' position. Head down, very hot, and with tears in her eyes, it was clear she had been there for a little while. She was upset that she hadn't been allowed to leave at the point at which it stopped being fun for her.

She insisted that it wasn't the other children, or the teachers, or anything that anyone had done, and that she really didn't know why she had got upset and angry. She just knew it wasn't fun any more, something had flipped and that was it. Game over. The day was finished off by somebody piling into the back of my car on the way home - luckily not much damage done, but it was a bit of a shock.

Sometimes, no matter how much we try and prepare Sasha for new experiences, and no matter how much information about her we give to other people, it still doesn't work. There's hardly ever a time where she would agree to go back and try again - I wrote recently about the trampolining sessions which were an exception to this.

This is another path in our lives which has a closed door now, and I feel sad. It's so difficult to persuade Sasha out of the house for any activities and it would have been a big positive for her to feel part of another group on a weekly basis.

What I can take from the weekend though, is the positive way in which Sasha reacted to the car accident. She was already upset about the drama session not working anyway, but she didn't get as distressed about the bump as I might have imagined she would. She listened to me and stayed fairly calm, which was a big relief.

Maybe the time for trying something new just wasn't right; in fact I know it wasn't ideal, it's just the way things worked out this time. Tomorrow will be her first full morning at her new school and we have all been experiencing extra tension from this long drawn-out process of late. Sasha has become noticeably more edgy, with bigger mood swings, and this is probably being driven by her 'nervous-citement' about getting back into a school after eight months at home.

Or, it could be puberty hormones. Or a mixture. Oh joy. Keep your fingers tightly crossed for us please, that this school placement works!

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Sunday, 11 March 2018

Mother's Day in a PDA way

Thinking of Mums everywhere today on this year's Mothers Day. 
mothers day breakfast on tray

I felt so amazingly lucky and grateful to be presented with some breakfast in bed this morning; made by our older daughter, who also did a special shopping trip to buy me lots of thoughtful little gifts. She chose a giant card for me, and signed it from both her and her little sister, because she knew that's what I would want. That's the kind of thing a special sibling does. 
Pancake pop

Twelve is a good age it would seem; a time when you really appreciate having a thoughtful girl who has browsed Pinterest for a fab idea - check out these pancake pops! They were yummy!

Meanwhile, the card which Sasha's Dad bought for her to give me remains unsigned on the desk in her room. Maybe she thought she'd do it at some point, I'm not sure. This is in no way a complaint about that; I only point it out because it highlights the struggles with seemingly simple everyday demands which our youngest has. This is a key part of Pathological Demand Avoidance.

I suspect there are many other parents of PDA children across the country who have not received a card today; sadly most likely many who have not been made to feel special in any way, and who have had to do the usual firefighting.
Unsigned Mothers Day card

Luckily, I know how much Sasha loves me, so I'm not offended by the fact she won't write me a card. I mean, obviously it would be nice if she did, and in fact she has, on the odd occasion over the years. There's never a guarantee though, and even though her Dad tried his best in all those specific PDA strategy kind of ways to get her to sign it, she just couldn't. So any family and friends, take note, it's nothing personal! I think Tamsin deserves a big pat on the back for always being the one to sign for both of them, and I made a point of thanking her for that today.

Surprising then, that today Sasha did actually manage to do more handwriting than she's done in the past 8 months - on this weekly schedule, which she decided herself she wanted to do. 
Sasha's handwritten weekly scheduleThis is all part of her 'new grown-up school girl' plans, and whilst my instinct tells me it will never last, you just never know with Sasha. She worked hard on this schedule today, and also on a separate picture, using stencils which she had just rediscovered - novelty factor often pays off with PDA! The girls are teenage girls, one grumpy like all teenagers (!) and the other shy... both with names and back stories. We can squash that myth about all autistic children not having any imagination right here.
Sasha's picture of two teenage girls

I did gently suggest at one point that maybe she could use the letter stencil for my card, but as that was my idea and not hers, it was resolutely shrugged off. 

Another part of the 'big girl' plans involves Sasha sitting down with us all to eat tea. For many families, this is a given, but for us I could count on my hands the number of times this has happened over the years. So when Sasha suggested this was what she wanted to do, you can probably imagine my delight... and fear! Sounds like an easy thing to achieve, but given that Sasha has a very rigid diet and she eats every meal much earlier than the rest of us (lunch for her tends to be around 10am, 1130 at the latest on a good day, and tea is usually between 4 and 5pm), then I could see some challenges ahead. 

Anyhow, Sasha decided this new change would start with this evening's Mother's Day meal. Dad, big sis and I routinely have a roast for Sunday tea, so today's plans were the same - how lovely that Sasha would sit down and join us, even if that was to be with her standard oven chips and sliced turkey! 

We all sat down, at our table, no devices.. and that was where the 'fun' began. Sasha asked what everyone wanted to talk about and then proceeded to lead the conversation about what she wanted, and every time someone else tried to speak, Sasha would insist she hadn't finished speaking and we should all be quiet. And so it went on. 

Sasha was obviously in high spirits, but also on the edge, and if, for example, we suggested that she didn't bang her knife and fork together quite so loudly, she would flip to saying 'right, that's it!' and almost storming off because we weren't wanting her to do what she wanted to do. Cue backtracking from us, and the usual tip-toeing on eggshells to try and keep everything on an even keel. Luckily, big Sis played along and helped us keep her on that tightrope. By the end of the meal, Sasha had eaten pretty much nothing (less than she usually would have!) and she reached a peak, retiring to her room to calm down again. I wasn't sure whether I was laughing or crying, but it was probably a bit of both if I'm honest. I tell you, never a dull moment around here! 

So that's how Mother's Day played out for us. I've been thinking a lot today about how lucky I am, and I know we couldn't have got half as far as we have without the amazing love and support from my mum and my mother-in-law. So thank you both masses. 

I'd like to send huge hugs to all those who no longer have a mum around. Also to those who never felt they had a mum worth having as they grew up (not everyone is cut out for this job, sadly). To all those who are now single mums, and whose children didn't have a Dad around to try and help them write a card today, and to all those Dads who have had to take over a mum role. To all mums of children with additional needs, extra loving hugs, and the biggest hugs of all go to those mums who have lost children; I truly can't imagine that pain and just wish I could make it better for you. Thinking of you all.

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Friday, 9 March 2018

New school excitement

Right now as I type this, I'm sitting calmly at my computer desk. Internally, I'm running around waving my arms wildly in the air with a huge grin on my face.

It's been a great week. It's not as if an awful lot has been happening... just one big event which has made it special.
Sasha in her school uniform

Sasha finally got to spend some time in her new school. We were supposed to visit last week but snow meant the school closed for two days. Sasha was hugely disappointed to miss out on her chance to go, and the days following were tense as we waited to find out when we could re-arrange the visit for.

Thankfully, the message came through on Monday that Thursday would be the day that Sasha could go in to spend some time with her new teacher and classmates. Wednesday night came, and Sasha was just a 'teensy' bit excited....

On Thursday, a cheery voice boomed 'morning!' from somewhere outside my bedroom door. Dragged into consciousness, my first thought was that I'd overslept and a friend had somehow gained entry to come and wake me up. I rolled over and pressed the button for the clock; 7:00 exactly. Sasha was up and dressed in her new uniform; we were due in school at 10 am and it's a ten minute drive away.... 

Sasha admitted to being slightly nervous but also excited - 'nervous-cited' is a phrase she has invented for this. I took her to school and watched apprehensively as she was collected to be taken to her classroom. The plan was for half an hour in class and then a small experience of playtime if she wanted to. I took the opportunity to go for a little stroll down the surrounding country lanes.

When I returned I was given a thumbs up and told that Sasha wanted to stay for the whole of playtime, which was welcome news (even if it did make me slightly late for my next appointment). Sasha reappeared at 11 am with a huge grin on her face, saying that she loved it all. I was extremely proud of how she coped with the fact that it was a re-arranged world book day and all the other children were in costumes (we weren't told this was happening). She was just so happy to be in her uniform, to feel part of school.

I had to cover up most of the following video in order to hide the school logo badge, but I couldn't resist sharing it as I think it clearly passes on the message about how happy she is...

When we got home, Sasha explained that she had been 'worried about the 'social' but it went much better than I thought. I could relate to them and get on with them pretty well and quickly.' She was very chatty about her experience, explaining that as she arrived, the class were 'just edging into drama, and using their imaginations and costumes from world book day to try and create a story.' This kind of thing is right up Sasha's street luckily and I imagine she didn't hold back with her own ideas!

So it was a very successful trial session, and we've now been given a date of next Wednesday for Sasha to start properly. She'll begin with mornings and lunchtime only for a week and then hopefully get up to full days for the week before Easter.

I will admit that I'd be lying if I said I think it will be plain sailing from here on because it went so well yesterday... there will no doubt be a honeymoon period and there is much to learn on all sides to try and continue with this success. But it's a great start and I'll be staying optimistic for now!

The added bonus this week is the changes which we've seen in Sasha. As I posted on my Facebook page earlier in the week, she ate a whole strawberry. This is big news for us as it's very rare for Sasha to try new foods. Last night she decided to be more 'grown-up', and she took herself off to bed alone (partially because I was out for an evening with friends and Dad was on duty, but still). She also brushed her teeth before bed, which is unheard of! Then this morning she was up early and dressed fully (in her own clothes, not school uniform) and all day I've been hearing little snippets of how she wants things to change around here.

She's decided that we are all going to eat tea at the table together, and that will be our chance to discuss what has gone on during the day in school. She's stated that she is going to do a lot less gaming and watching YouTube; two activities which have meant a lot to her over the past eight months and which I don't suspect will be that easy for her to give up. However I will say that I'm loving the new school Sasha so far. Long may it continue!

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