{Navigation Bar}

Wednesday, 21 March 2018

Our PDA Story {week 31}

Time for week 31 in the series 'Our PDA Story' where experiences from other people living with Pathological Demand Avoidance, or who care for others with PDA, are shared.

I'm delighted to be able to bring you the perspective of another adult living with PDA this week. This writer has a very successful Facebook page called Sally Cat's PDA Page where she shares helpful memes describing PDA in more detail. 

Her post looks at a specific process and the difficulties with that for those with PDA - air travel. It can be particularly tricky for many with autism and although we have travelled on planes fairly regularly with Sasha since she was little, it has got more difficult as she has got older. We are now at a stage where she is refusing to fly because her dislike and fear of it is at an all-time high. If you read on, this post explains in a lot more detail what makes it so difficult.


PDA Airport Stresses and Some Helpful (and Less Helpful) Accommodations

As an adult PDAer with sensory issues, I find air travel extremely stressful. I am stressed by the demand to arrive at a certain time; to jump through various security hoops in the correct order and meekly accommodating their arbitrary demands (cope with the bright lighting and echoing sound; join the queue; obediently shuffle along with it following the cordoned path; take off your shoes; have no liquids bigger than 100ml; these must be placed in clear plastic resealable bags; have your boarding card ready; accept that you cannot now go outside; have your passport ready; wait for an uncertain amount of time in a crowded departure lounge, etc, etc). And then, because we do not have a high income, we can’t afford to pay extra for seats near the front of the plane and I suffer intense claustrophobic stress struggling to get to our middle-of-the-plane cramped seating and then, worse still, waiting to get off again. Confinement for me is an intolerable demand. I have to be free. Leaving planes I barge past people hurtling along as fast as I can to break away from the crowds around me. 

I’ve realised that this behaviour is actually meltdown. I react the same in crowded shopping centres. We carry only cabin baggage not just to save money, but to avoid the additional confinement of having to wait interminably for hold baggage to appear on the carousel. Any increase in airport confinement time increases the stress. Factor in our now six-year-old PDA diagnosed daughter who also has sensory issues and you can see why I have sought to find ways to reduce these pressures when we fly. 

We flew with KLM from Bristol to Toulouse via Amsterdam to visit my partner’s parents in February last year. I emailed KLM and Bristol Airport (I avoid phone calls) and arranged for us to have Special Assistance which would fast track us through security and allocated seats by the back doors of the plane for each of the four journeys. This sounded like a helpful accommodation until we experienced it. We were required to wait at the Special Assistance point until we were walked through security. This caused us to be more rather than less confined. 

Worse, we were required to be first on the plane and last off. Sitting by the back doors did feel less claustrophobic for the first flight, but was extremely unhelpful for the second one (Amsterdam to Toulouse) because they only opened the front doors so we were trapped at the back of the crowd with my anxiety going through the roof (Unfortunately not literally, or we’d have been able to exit more quickly via the hole it had made!) Once we finally escaped the plane I was confronted by a keen looking man standing next to an empty wheelchair scanning the departing passengers for that Special Assistance traveller. There was no way I was going to subject myself to sitting in a wheelchair and foregoing even more personal control (and dignity) so I pretended not to notice him and marched swiftly past. I made the decision not to use their Special assistance for our homeward journey and found it less stressful as a result. 

Our next flight was to Naples from Stansted with easyJet in April this year (2017). I found out that Stansted have an autism wristband service similar to Manchester’s award winning one and emailed them and easyJet to enquire. This system actually proved very helpful to us. There was confusion about where to pick the wristbands up from (counterintuitively, the Special Assistance desk did not keep them) but beyond this the system was fantastic. The wristbands permit the wearer and their group to use the fast track queue unaccompanied. EasyJet had also allocated us free of charge seats second row from the front. This was marvellous. So much less claustrophobic and we had a fairly stress-free travel experience. We even found belatedly that we’d been allocated free Speedy Boarding for our homebound trip, but hadn’t known to use it. Overall, very impressed with Stansted and easyJet’s positive accommodations for PDA autism. 

Our last trip unfortunately ended less happily. We flew from Bristol to Belfast with easyJet in August. Emailing easyJet proved stressful because they took a long time replying and then, once they did reply, informed me they’d booked us Special Assistance with no mention of autism wristbands, Speedy Boarding or free allocated seats up front. I emailed back citing our earlier Bristol and Stansted experiences and was relieved and grateful when easyJet responded that they had signed us up for Bristols autism neckband fast tracking service, Speedy Boarding and free allocated seats three rows from the front (if you don’t ask you don’t get!). This was all well and good and we had a pleasant outbound journey. 

It all fell apart on our return. My demand avoidance had put me off enquiring about fast tracking through Belfast Airport and I’d assumed normal queuing wouldn’t be too bad as it is a small airport. We’d had no major stresses travelling back via Toulouse and Naples. However, alas, how wrong had I been! The cordoned snaking queue to security lasted a whole hour. I felt hot and stressed and claustrophobic and anxious and trapped and overloaded to the extreme. To make matters worse, I was singled out for a spot search in which the security guards herded me into one of those giant scanners where they can view you as if naked. I was prodded and ordered to hold my arms up and angle my feet just so. This is a pathological demand avoidance hell scenario, especially as PDA comes with high social anxiety and being scrutinised naked was not good for my chi! I was desperate to eat something. I’d been so anxious before setting out for the airport that I’d thrown up my breakfast and I suffer dizziness if I don’t eat. Breaking past security we came to a large canteen cafe area (replete with echoing sound and glaring lights). I was in minor meltdown by now and barged my way to a small vacant table where I dumped off my cabin bag. My man then made an innocent but unfortunate error of judgement. He told me that he’d leave me sitting there while he went and got teas and food for him and our daughter. 

Now, I never WANT to meltdown and I try to stay calm and rational because this is how I want to be, but meltdown is not a choice. I recently heard described as akin to having an epileptic fit and I agree with this analogy. I cannot control what happens when I meltdown. All I can do is try to avoid the triggers. Unfortunately at that moment, I had already been subjected to prolonged and severe triggers (confinement, sensory overload, etc) and now I was confronted with three more triggers: 1) not being given choice (my partner had told me he was getting food first), 2) being confined to wait with our bags and, 3) uncertainty over how long I would have to wait for them to return. Intolerance of uncertainty has recently been shown to be higher even than anxiety for PDA children and I certainly relate to this. Nearly every meltdown I have is triggered by being kept waiting for an uncertain amount of time; the longer I wait the more my stress builds. I try to rationalise the situation and stay calm, but the stress still mounts. 

I am very sorry to say that I was a complete bitch to my young daughter and partner by the time they appeared with their food and a tea for me. I don’t have physically aggressive meltdowns, but nothing nice comes out of my mouth. It honestly feels like I’ve been possessed by a demon. I watch myself in horror as I say one nasty, cutting, hurtful thing after another. I hate myself, but I cannot control it. It is a vile thing for all of us involved. My daughter started crying, though she tried to mask it. I was able to break through my meltdown to tell her I love her. I was embarrassed and short of words for a long time afterwards, but kept telling my daughter how much I loved her. On the plane (and our Speedy Boarding had failed us somewhat in that we got stuck in a crowd unable to get upfront to use it for sometime) our daughter told me that she liked being on aeroplanes but doesn’t like airports because they are too noisy with too many people. I can only say I agree with her on that. 

Next time we fly, I will make sure we have fast tracking outbound and return. I am very grateful to easyJet and the airports we’ve used for often generous the autism accommodations they have implemented and I am happy to see that these accommodations are fine tuning and increasing. I’m thinking of traveling somewhere by ferry instead of plane when we go abroad next year, but next time we do fly, I am hoping we’ll have a much less stressful experience. 


Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA.

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA.

PDA can often be mistaken for ODD (Oppositional Defiance Disorder) but there's a definite difference; more information here: the difference between PDA and ODD.

A variety of experiences of living with PDA can be read using the link This is our PDA story

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

The PDA Society webpage has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website. 

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 which I will be helping with - hope to see some of you there! 

Pathological Demand Avoidance Society website

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "Our PDA Story {week 31}"

Tuesday, 20 March 2018

What autism means to me

With World Autism Awareness Week fast approaching (26th March - 2nd April, expect a flurry of posts), I thought I'd take a moment to reflect on some of what autism has meant to me over the years. I've been writing this blog for over eight years now and it's always interesting to look back and see how far we have come and what we have learnt. 
Stephs Two Girls when much younger
An old photo; just because it's cute!

Please do humour me as I jump right in with some random thoughts of what autism means to me...


To really get to know anyone, you have to listen to them. There's a real skill to listening properly, rather than letting it go in one ear and out the other. I'll admit that there are times, such as earlier when Sasha spent twenty minutes pacing up and down the room, talking at me in detail about a new Kirby anime series which she'd like to produce for the fans, when my hearing rather than listening kicks in. I think Sasha probably knows (although I can't guarantee it) that if she were to quiz me on it all at the end of the session then I possibly wouldn't come top of the class. As long as I don't interrupt her flow though, she's happy; she just needs to get those thoughts out of her head. If you listen, and understand that, it goes a long way to forming the basis of a trusting relationship.


For a long time now, Sasha has automatically sat in the front seat of the car whenever we go anywhere. Whether it's a short or a long journey, she needs to be up front, which means that both her older sister and me, her mum, are relegated to back seat positions when the whole family is on board. This is mainly because Sasha gets stressed about any form of travel, but also because she needs to control the music. Music is very important to Sasha. Patience is very important too. As in, it's important that we are patient. Sasha needs to hear the music which makes her feel calm, and she needs to listen to the words. That means no talking in the car. No random conversations, no pointing out places or signs of interest, nothing. Unless Sasha is leading a conversation (pretty rare, in a car), then talking is frowned upon. We have to listen to the music she chooses, and we have to accept that she may have a need to listen to the same song four times in a row to get it clear in her mind.

Patience is not one of Sasha's strengths however. Waiting for anything is the hardest thing in the world, and there are few things that she will wait happily for. The anticipation, or the boredom, are too much for her, and it causes a huge anxiety overload.


That feeling of not fitting in. When Sasha was much younger, even before she was diagnosed, I'd try to take her along to Tumble Tots, Dinky Dancers, baby signing or Monkey Music, or indeed any other number of organised toddler groups which I had enjoyed with our eldest girl. It became clear very quickly that this kind of 'organised fun' just wasn't going to work for our youngest. She seemed to ignore anyone who was pretending to be group leader, choosing to run up and down the hall noisily instead, or stand up and shout at inopportune moments (lots of them). 

The groups didn't work. My little girl was a square peg who just didn't fit into that round hole. The words 'you can't blend in when you were born to stand out' have rung true ever since. In practice though, what it meant was that I spent more and more time at home, and had less chance to form new friendships with other mums of children the same age. It was also difficult to keep up with the friends I'd already made when our eldest was first born, given that I struggled to leave the house.

Fast forward eight years and it was clear that the isolation was something our autistic daughter felt keenly too. Despite being surrounded by lovely children at school who had been in her class for over five years, and who were on the whole very understanding, Sasha reached a point where she knew she didn't fit in. She felt isolated because she knew she was different. I'll always admire her bravery in admitting this and deciding it was time to try a new path.

New tribes.

My first recommendation for any parent having just received a diagnosis of autism for their child is to find other parents and carers of autistic children. Strange as it may sound, parents hold the key to support. Generally, you'd expect support to come from 'professionals' or practitioners as I prefer to call them, but you quickly learn that their time is limited, and in some cases sadly so is their knowledge. The best information is shared by other parents. Parents who you didn't know before a diagnosis, but who suddenly seem to appear out of the woodwork. Parents who are also struggling through, but who still have a desire to help others, to make that path easier. Whether it's online or locally (I recommend both if you can), these parents will be a lifeline. If you're really lucky, you will find some who you can share both the good and the bad times with, some who you can relax and recover with, and some to share the Prosecco with. They are worth their weight in gold.


I may call myself an expert in my own child, but I'm a long way off being an expert in autism. There is so much to read and discover on the internet; I'm still learning every day. I think every parent or carer of an autistic child will tell you that they have a pile of books somewhere - a pile of autism books that is. They might be by the side of the bed, gathering dust or may be neatly categorised in the family library. Sometimes, they have been given away to family, friends and schools, in the hope that someone new will read and understand. There's a never ending list of good ones to read, but at some point the pile will seem too high and too much to tackle. When this happens, it's time to take a break from the immersion in all things autism for a while, to rediscover yourself and what life is all about. The books aren't always the answer, but there are plenty of good answers in the books, when you are ready for them.


There's a blog post on the way next week about the film Wonder, but here I'm using it to mean 'amazement'. As in, there has been so much to be amazed about along the way. When your eyes are opened, there's so much to learn and autism is a vast topic. I'm amazed by how much Sasha does achieve, when she clearly finds the world around her confusing and unpleasant a lot of the time. I'm amazed by how much other neurotypical children learn 'by osmosis' - by that I mean all those social rules, that are never explicitly taught, but which they somehow pick up along the way. I'm amazed at the strength of lots of parents of children with additional needs who carry on regardless and do some pretty extraordinary things

Pathological Demand Avoidance.

What, you didn't really expect me not to mention this in a post about autism awareness did you?! I came across an old post of mine recently, in which I talk about our 'lightbulb moment'. This is a phrase you will often hear used by parents of autistic children who just don't seem to fit the typical description of autism. After receiving the diagnosis of autism for Sasha, I met other parents of autistic children, but none of their children seemed to react to things in the same way that Sasha did. Of course, every child is different, and each one of those autistic children will have been unique, but it felt as if our girl had less in common with them than was assumed by the over-riding 'autism' term. 

That's when I scoured the internet for information and first came across the term PDD-NOS (Pervasive Development Disorder Not Otherwise Specified) or Atypical Autism. This was used to describe people who didn't seem to fit neatly into one of the other categories of autism (classic autism or Asperger's Syndrome); it seemed to be more popular as a diagnosis in America however. This discovery somehow led me on to reading about Pathological Demand Avoidance, and suddenly the description of the characteristics of someone with PDA seemed to fit our girl like a glove.

Finding the PDA Society and all the info available about PDA helped reassure me that we were going down the right path in terms of strategies for our whole family. That's why I'm so keen to get the word out to other parents, and next month on 18th April, I will be helping out at the PDA conference and hoping that others will help share the news on the day. Overall my aim is for Autism Awareness and acceptance to increase every day of the year, not just for one week.

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "What autism means to me"

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

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "Siblings {March 2018}"

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!

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "Our PDA Story {Week 30}"

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!

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "Drama club trial"