Tuesday, 17 July 2018

School Life with PDA ~ July Update

Thanks to a few busy weeks/months, it's been a while since I managed to write an update of our life with PDA on this blog. I do tend to do more regular updates over on my blog Facebook page, so I'd love it if you could join me over there at www.facebook.com/stephstwogirls.

Sasha started at her new special school just before Easter this year. The past few weeks have been increasingly difficult and culminated in a meeting about attendance last Friday. There's a few factors which were contributing to the struggles, not least the heat, which Sasha has found very difficult to deal with. We've always assumed she has a higher body temperature than most children to start with- this winter she didn't wear a winter coat at all!
Sasha at school desk with fan

So the heat is pretty unbearable for her, and that, coupled with those days in the run up to the end of term where schools veer away from the standard routines and start to introduce things such as fetes, sports days and picnics, have all taken their toll. I wasn't at all sure that I'd manage to get Sasha to school this week, but thankfully last Friday afternoon her amazing teacher talked her through a schedule for the week ahead, and that seems to have helped massively. It could also have something to do with the fact that Sasha was given some control over what went on the schedule (within reason of course!). On Monday morning Sasha told me that this week wouldn't involve any work at all, and I groaned inwardly, because I knew that if that was a misunderstanding on Sasha's part, then I'd be in for a difficult time after school that day. 

All went well though thankfully and Sasha's class teacher sent me the above photo of Sasha staying cool in class via a great new communication app which the school are using, called Class Dojo. Technology has definitely made some great improvements to our lives! I know that Sasha is looking forward to watching the movie 'Inside Out' this week at school; this is one of only four or five films which Sasha has ever sat through so it was a lucky choice by school! Three years ago, we wrote our Inside Out review; it gripped her back then but I'm wondering if the emotions will mean even more to Sasha now.

There have been some huge successes from Sasha's new school and I'm going to try to cover them in a separate post very soon. Although there have been some changes to routine for Sasha in these last few weeks of term, it's nothing compared to the amount which would have been going on for her if she had made it to the end of her mainstream junior school. Sasha is 11 now, and would be in year 6 officially, but she moved straight into a mixed key stage 3 (years 7-9) class at her new school. Which is great, as it means no big transition for her in September. Her old classmates have been through SATS (which Sasha has skipped, thankfully!) and are now going through lots of 'lasts' - assemblies, school shows, day trips, discos, masses and other random parties. I read a fab post from a great friend of mine whose writing I adore this morning, and it made me almost cry with laughter and relief that I wasn't going through that. Do read 'the end of term endurance event'.


One of the old school mums dropped a Yearbook round for Sasha today. The Yearbook is something done annually at that school - a photobook full of pictures of all the children from Sasha's year group (two classes, so sixty children). Pictures taken over the past seven years of both infant and junior schools, and a mini portrait plus questionnaire for each child. I wasn't sure how Sasha would receive it (or if she'd be mad at me for sending in photos of her) so I casually left it on the sofa where she usually sits for when she came in after school rather than hand it directly to her.

Unexpectedly, it brought tears to her eyes. She read every single page of it and declared that it was 'cute' and made her 'emotional'. I've asked her a few times before if she wanted to go back in this term to say goodbye, but she finds a lot of attention difficult to deal with so she rejected the idea, despite 'kind of' wanting to go in. This feels like a nice way to say goodbye to her old school, some kind of closure. I wasn't expecting the emotion from her, and of course it made me blub too, but it was lovely to see in a way. She spent so much time with those children and they really did look out for her. This photo below was her classmates giving her a group hug in the park last summer, a few weeks after Sasha had left school because she felt unable to cope there any more. Even without my nostalgic rose-coloured spectacles I can say it was a great school for Sasha; we held on there for as long as we could but Sasha's time to move on just came a bit sooner than it did for her classmates.
old friends giving sasha a group hug

At the weekend just gone Sasha was invited to the party of a girl from her new class. Despite the fact there were activities she loved and was looking forward to there (a bouncy castle in particular!) and a few friendly faces which she knew from school, Sasha was unable to engage in the party at all. We left at her request after just 15 minutes and she spent all that time by my side, or hiding behind me. She told me that she felt 'socially awkward', embarrassed when people looked at her, and that she felt others were judging her. Her anxiety levels were so high and it made me quite sad. My brother gets married in two weeks' time... let's just say I'm 'slightly' nervous about how that big day with lots of family is going to go for Sasha!

Sasha realises now that she is struggling with any kind of friendships, largely because she needs to be in control of everything and everyone. Even though she can see this is a problem, she feels unable to change how she is. I suspect we are going to have to work hard (in a way that she won't realise) over the next year to try and equip her with some skills to manage relationships better.

The past few days have reminded me that this life is like a roller coaster ride which we've never been on before. We don't know when the dips are coming, how deep they are, or when they'll go back up, Hopefully we will always be returned to starting level at least, and if we're lucky we'll reach some great highs along the way.





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Wednesday, 11 July 2018

Our PDA Story {Week 38}

Over a period of about four years, I've been publishing posts in my blog series 'Our PDA Story'. The idea behind it was to share real life experiences of other people and families living with Pathological Demand Avoidance.

I'm grateful to those who have chosen to share their stories via my blog; it can be a brave thing to do and I know that not everyone is able to, for various reasons. However I also know, from messages received, that the posts in this series have given other families renewed energy and hope in times of need. Sometimes just knowing that you are not alone is all it takes to gain a little more confidence to have faith in your own parenting and to have the strength to stand up and fight for your own child.

The guest blogger this week also has a girl with PDA like us; some of the story is very familiar to us but as with other guest posters, her child is not exactly the same as ours. This writer does have her own blog which she started fairly recently; you can find it over at PDA Bubble. Her Facebook page is at  www.facebook.com/pdabubble



**********

With the experience of hindsight I realise that L was a difficult baby. She is my first and only so I had nothing to compare her to. Everything seemed to happen in a blur of tiredness. Six weeks premature, hospitals, reflux, unable to settle at night, refusing feeds.. Babies are hard work I kept hearing so I kept my head down and ploughed on. I had planned to return to work when she was 10 months and luckily my work had a nursery on site which seemed ideal. 

The first couple of weeks went really well as we got used to the new routine and I was lulled into a false sense of security. Her sleeping was still horrendous, she didn't sleep through for the first time until she was 23 months but I was functioning as a working parent. Gradually the reports at pick up went from 'fine' to 'she was a bit upset today'. She would get very upset if another child had cried or if someone else tried to play too close to her. Eventually it was suggested to move her up to the next age room early so there wouldn't be so many crying babies upsetting her. 

Again this went well to begin with but gradually the reports turned more negative. She wouldn't eat much. She would sleep for extended periods - I'm sure to avoid socialising - she would withdraw into the corner of the room and lie on a beanbag or she would gravitate outside when she could as there was more space. I had meetings and the consensus was that I needed to be firmer with meal times and bed times. I blamed myself. She would make herself sick in the car on the way to work and struggle and kick in her seat all the way home. A few times I had a call to collect her as she had a high temperature and once in the car and leaving work she would stop crying and start laughing 'ha ha fooled you!'. 

I began to worry about her and felt awful leaving her each day so eventually I reduced my hours at work. I thought it might help if she was there less but it didn't and whilst the nursery encouraged me to increase her days again for the best everything in me was starting to resent her being there as much as she clearly was. We decided to go our separate ways when they explained that 'they couldn't cope with her level of need and maybe a nanny would be more suitable'. Autism or any medical explanation had never been suggested so I internalised all the feelings of sadness and failure and blamed my parenting again. 

I needed to work to retain a piece of me so my mum offered to look after L two days a week and I changed jobs to accommodate this. She preferred being at nannies but it wasn't plain sailing and she often pined for me all day but would become aggressive to me and/or my mum when I came home from work then rage all the way home before falling asleep in the car then waking up once we got home and raging again before eventually going back to sleep. 

I knew that she needed to keep trying to mix and socialise with others so I thought building her up gradually might help. We would go to a park or a toddler group once or twice a week but they would be a disaster. She would either cling to me or point or drag me away arms flailing at my face. After one particularly bad experience I left after 10 minutes with hot tears falling down my face. One of the other mums must has seen my distress and spoke to a member of staff as I had a call later that afternoon from the receptionist asking if everything was ok. Another blur of appointments, health visitors, SLTs, Paediatricians, OTs, Dieticians and a horrible suspended period of limbo until we had a diagnosis of ASD amongst other things. 

She was slowly integrated into a playgroup setting who were fantastic with her and me, supporting us both and even coming along to the CDAC assessment to see what went on as she was the first who had been assessed so early. Playgroup had gone ok the first year so we kept her there for her nursery year as we didn't think she would cope with the upheaval of change. The playgroup had rightly got busier as they were doing such a fabulous job but the second year was more traumatic for L as new younger children were arriving who cried alot and scared her. She would hide in the toilets or stick to her one to one like glue. However with her diagnosis I was hopeful that school would be a fresh start with everyone on the same page and my experience and knowledge of L better.

Reception has nearly finished and generally it has gone well. To her teachers she is progressing and settled. However they don't see everything that happens behind the scenes. From the 45 minute meltdowns in the car park because being at school all day has taken everything out of her to waking six times in the night, constantly grinding her teeth, anxious about whether there is assembly in the morning. From waking up at 4:30am but still being late because the demands placed on her to get ready and go to school are too overwhelming today, to the toileting accidents which occur on a daily basis. However, I am her expert now and over time am learning more about her and what works best. I am more confident in my requests and able to fight for things which I feel she needs. I don't know what the road ahead holds but we are on it together every step of the way.

********** 


Thanks for taking the time to read. Comments are much appreciated, and sharing on social media could 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

There's a chance PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a distinct difference. My explanation can be found here in my post the difference between PDA and ODD

A variety of other experiences of living with PDA can be read using the link Our PDA story series

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



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Tuesday, 10 July 2018

Holiday travel with Pathological Demand Avoidance (type of Autism)

Holidays and travel can be particularly tricky for families living with children with Pathological Demand Avoidance.

I've seen a couple of posts on social media recently about travelling with children with autism, most specifically around airport assistance. A lot of that information is very relevant and helpful to those with PDA, so I wanted to share it along with some of our own experiences. I thought it was worth offering some quick tips to help with holidays too, although I'm very aware that I am by no means an expert. I stand by the saying that every autistic child is unique, and there is no 'one size fits all' strategy. Each child will find different aspects of life and travel challenging, but it could be that one of these tips prompts an idea or a different way of doing things.
Stephs two girls pulling faces in Spain
Having fun in Spain in 2011
I have been lucky enough to be able to enjoy overseas holidays on a fairly regular basis; my own father was in the Merchant Navy and so as a child I got to travel far and wide around the world. As an adult I craved the slightly warmer weather guaranteed abroad and I loved visiting new places so I made sure I could travel further away at least once a year. I always appreciated this opportunity to see the world and so wanted to carry it on with my own children. 

Our holiday travel experiences


It's funny how lots of the pictures I have of Sasha on our early holidays show her pulling a face like this:
Sasha looking grumpy in the sea
France - the sea wasn't quite this brown in reality!

However there were smiley ones too, especially when she was swimming - she's always been a water baby:
Sasha looking happy in pool aged 2

None of our holidays have felt easy, or relaxed, but then you don't expect them to be when you're with a toddler. I think we always thought the holidays would improve as the girls got older, but that's not been the case.

We first took the girls abroad in the summer before Sasha was diagnosed with autism. That holiday was to France, and we travelled with our own car via the Eurotunnel. Although we didn't suspect autism at that point, the travelling certainly wasn't easy; Sasha screamed herself sick when strapped in her car seat for the last 15 minutes as we exited the train. We had a planned stop overnight in a hotel in a small French town which we had never been to before (and are unlikely to return to!). I vividly remember pushing Sasha on the pavements in the stroller to try and settle her at bedtime, and her directing me by pointing along roads away from the main stretch. I found it slightly amusing but also puzzling that she seemed to know where she wanted to be even though we'd never been there before. Looking back, I think both these 'happenings' could have been flags for Pathological Demand Avoidance if I had known about it at that point.

We continued taking a holiday abroad every year after that, but we switched to flying so we could go further afield. Although I don't remember the first time we flew with Sasha, I probably was a little nervous. More so because I remembered only too well being in floods of tears the first time I flew (alone) with our eldest girl, as she had that terrible pressure pain in her ears and screamed for the whole half an hour of landing! So I was probably expecting similar from Sasha. When it all seemed to go well, I was relieved.

Further trips via airports had mixed results, but one thing which did really help was when we realised that there were systems in place for helping autistic passengers. Most of the UK airports now have guides and systems such as fast track routes to avoid the stresses of waiting in long security lines and busy places; airports abroad can be very hit and miss with their help.

There's a great up-to-date list of which airport offers what in terms of assistance over on the Airport Parking & Hotels website. For more specific info, look at these online guides produced by some of the bigger airports:

Manchester airport
Gatwick airport
Birmingham airport
Heathrow airport
Stansted airport
Luton airport

We carried on holidaying abroad with friends up until the point when we were lucky enough to book a dream big trip to Disney Florida three years ago.
stephstwogirls in front of Disney castle

The Disney holiday wasn't exactly a roaring success (which I won't go into here but you can read my post 'The Magic of Disney') and it was also a turning point in the planes and flying situation. It was the first time that Sasha reached for, and read, the safety card from the back of the seat in front, and I could see her mind working overtime as she looked at the images of the face masks and chutes from the plane. She wasn't great at conversation (still isn't) but managed to ask 'Why? Why would you need that?' and when I tried to explain in fairly innocuous, non-stressful language, I could see her brain cogs turning even more. She didn't move from her seat once for the whole 7 hour flight; her anxiety about travel and the 'what ifs' had clearly kicked in. 

We did of course manage to get her on the plane back home from Florida, but she was adamant that she wouldn't fly again. The following year we booked to stay near Paris, so that we had the option of car and ferry or train travel, but as it happened Sasha went into hospital and so we had to cancel our holiday. For the next year, I was keen on travelling a bit further to ensure we were guaranteed that sun at May half term time, so we looked at the south of France and convinced her that she would be OK with flying. I did a lot of research and made sure our travel times to and from the airport either side were kept to a minimum, as Sasha also finds any long car journeys stressful. We stayed at the Eurocamp Le Brasilia site and enjoyed a week's holiday before having to fly home. Sadly, there was a thunderstorm as we were due to leave France, which meant our plane was delayed coming in (waiting is never good for Sasha) and we were almost delayed again after boarding the plane and waiting to take off. The storm also played into Sasha's fears about natural disasters and flooding. That trip home was not so much fun, I'll be honest!

Since then, Sasha's fears about lots of things have been worsening, and flying is not something she was open to the idea of. We booked for France again this year (still clinging on to the dream to be abroad!), travelling by car and Eurotunnel. I'm currently at the second stage of planning, which leads me on to my first bit of advice. 

Holidays Tip number 1: Prepare


Sounds obvious, I know, but I thought I'd put some examples behind this. Tanya from Mummy Barrow was so kind to interrupt her recent day trip to send me some videos of what it is like to actually drive onto the Eurotunnel train in a car. These clips have already helped Sasha massively to get an idea of what must be a particularly strange concept to a lot of young children (and some adults!) - a car, on a train?! Our eldest was lucky enough to go on a school trip to France at Easter and so we have extra ones of her coach boarding too. We'll show them to Sasha again the day before we leave just to refresh her mind.

visual timetable for daily activity
When Sasha was younger, we would put together visual boards (actually just laminated sheets of A4 paper) with plenty of pictures about our holidays. The car we would travel in, followed by airport check in desks, baggage carousels, security x-ray machines, plane seats, hire cars, apartment and pool etc - as much as we could, to prepare her for what was ahead. I've trawled our computer but sadly can't find the exact ones we used - but imagine the above, which was a daily plan we had, but with holiday related images on such as the ones below:
Images to do with travel

Visual images still help massively so although we don't go in for quite as much detail now, there's still pictures to show - after all, we all like to see where we're going to, don't we?! Emily from This Little Boy of Mine blog actually visited the same places in France that we are going to, earlier this year, and very helpfully sent some of her family snaps over - everything helps!

So knowing what to expect really helps, and running through timelines for travel and calendar dates if you have any activities or day trips planned when there is also worth its weight in gold.


Holidays Tip number 2: Don't expect too much!


Following on from the comment about day trips.... I think there's social 'norm' expectations which are all about having fun on holiday and doing things you wouldn't otherwise do, whether that's watersports, sightseeing or building sandcastles. These don't necessarily suit all our children, so it's about finding and planning what's right for them. 

Over the years, we've learnt that we've needed to drop our ideals as parents. What we would like to be doing on holiday (sunbathing on a beach with an ice cold drink) is a distant memory and we just focus on what is right for the girls. If that means a week away without exploring further than five minutes from our accommodation, then that's what we do. We live in hope that their idea of fun and ours might meet at some point in the future! Tamsin is much closer to this than Sasha is likely to be for a while yet. This kind of experience could match that of many families of course, but I think the point is that for those with children with additional needs, this might happen much later or not at all. Time will tell. In the meantime, we've realised that to have a good holiday ourselves, the girls need to be having a good holiday. So it's a case of letting go where necessary.

Holidays Tip number 3: Arrange some 'me time'


Holidays are the nations way of relaxing and regrouping; switching off from the daily humdrum of life at home. This is almost impossible to do when you are on tenterhooks, walking on eggshells, waiting for the next thing to go wrong - as so many of us living with PDA generally are.

If you're going to regain energy, you need to be able to switch off too. Kids clubs are not impossible for all children with PDA, but I'd hazard a guess at unlikely for most. For some, you should take the option to leave your child with your partner/their 'other' parent, even if that has to be with strict rules and strategies (for the parent/partner to follow, not the child!). I feel for single parents travelling with younger children and wish I could help - in this case I'd suggest doing whatever it takes to find your peace, as long as the children are happy, whether that's long siestas or leaving them with an ipad for longer than you otherwise would. You're on holiday, you're not allowed to feel guilty about it!
Stephs two girls happy on a beach
Fun times on the beach.. wouldn't happen these days!

So that's our holidays in a nutshell. If anyone has travelled via the Eurotunnel with an autistic child and has any top tips or photos of the services area, please do let me know!

stephs two girls happy by pool
Told you - always happy with a pool!




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Monday, 9 July 2018

Harry Potter Goblet of Fire at Warner Brothers Studios

Any Harry Potter fans out there?! If you are, and you've not yet made it to the Warner Brothers Studio Tour in Watford (near London), I can totally recommend booking as soon as you can. Even the website is fantastic - check out www.wbstudiotour.co.uk.
harry potter and goblet of fire tv image

Our eldest girl is a huge fan and knows the Harry Potter books inside out. Sasha has not read or watched any of the films, but still enjoys visiting - and that's high praise from someone who struggles to leave the house very often, and who doesn't like being in places with lots of people!
eldest girl in front of harry potter map which says I solemnly swear i am up to no good

We've been for the Studio Tour four times now and have loved it every time (see my Sweets and Treats review and our Mother's Day trip). Every time we go, there is something new to see but we also always find more bits and pieces of interest which we didn't see during our last visit - this place is just so vast, and informative.
Goblet of Fire and costumes in Harry Potter Warner Brothers studios London

The latest theme is all about the Goblet of Fire, with a special feature running until 23rd September 2018. There are props which have never been seen here before, including, of course, the Goblet of Fire, which spits out burnt parchment bits just like in the film. You'll never guess who it predicts will win the Triwizard Tournament?! New costumes and props are to be found in the Great Hall too.
Triwizard tournament cup Harry Potter


We loved the Prefects' Bathroom Taps which have multicoloured running water, and the corresponding miniature model. 
multicoloured prefects bathroom taps harry potter

model of prefects bathroom taps harry potter


Sasha dashed through the whole place at her usual breakneck speed so we had to work hard to slow her down and enable our eldest girl to see all the detail she wanted. 
Sasha in front of Hogwarts Express Harry Potter

Forbidden Forest spiders

Steph's Two Girls in front of Privet Drive

floating letters in Privet Drive


There is so much to see and do though that with a fair amount of backwards and forwards we managed to keep Sasha there for a good couple of hours. We enjoyed the Forbidden Forest, Privet Drive and Platform 9 3/4 along with Sasha's other favourite, the computer animated dancing screens:



Sasha dancing in front of the knight bus at harry potter warner brothers studios

I'm not quite sure what everyone else was thinking of Sasha's display in front of the Knight Bus, but it's the kind of place where nobody seems to bat an eyelid because they are all too engrossed and having so much fun themselves!
sasha overlooking giant hogwarts model

tamsin waving her wand at giant hogwarts model

I honestly can't recommend this place enough; you can have as much time as you like to wander through the exhibits and it can easily take several hours if you're a huge fan, so it is well worth the entry price. Warner Brothers Studio Tour is also very accessible and helpful to disabled visitors, so top marks from me there too. A fab day out.



Disclosure: we were given free tickets for an evening event to explore this new feature, with no commitment to write any review. However we loved it so much we want to share it with you!



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