Thursday, 28 May 2015

New London Nickelodeon Store opening May 2015

There should be a footnote to this post but I have decided to begin with it for reasons which I hope will become clear.

I'm very aware that there are those who may be confused, or even irritated when reading my blog on and off, because I can go from writing about how PDA (Pathological Demand Avoidance) affects our life and can hold us back, to talking about amazing holidays and trips out.

I never want to come across as 'poor me' or 'poor us' about our lives; we are very fortunate to have a great lifestyle and plenty of family and friends to support us. I know there are those that probably think I moan too much on the blog, and that my life sounds infinitely better than theirs, but oversharing and people not seeing the full story are definitely two of the biggest hazards of social media.

Family life can be very trying at the best of times, especially when you have young ones, or if you choose to have a larger family. That said, PDA is a different level; extremely difficult to live with, and a totally different kettle of fish to the kind of life you can lead with neurotypical children (I know, because I have one of those).

As my previous post will show you, I've spent a few days during this lovely half term sitting indoors, trying to persuade my two girls outside. It just doesn't happen when I want it to, we can't go out and join meet-ups with other families very easily.

So why, on earth, you might ask, would I accept an invitation to go and check out the brand new Nickelodeon store which is opening in London's Leicester Square tomorrow?


I've asked myself that a couple of times to be honest. Especially right now, when I know I'll have to be up early in the morning to get the girls there by train. Especially when Sasha doesn't enjoy travelling anywhere more than 10 minutes away. AND it's going to be raining. Sasha hates the rain. Sigh.

Nickelodeon though. Sasha is a long-time fan of Nick Jnr, even though we've never had Sky or any other form of cable TV in our house. Dora The Explorer has been a huge influence on our life; the teacher of Spanish and politeness to Sasha. The latest addiction is Paw Patrol, and we can of course thank You Tube for the introduction to them. They have plenty more characters such as Spongebob and the Teenage Mutant Ninja Turtles, and I know the shop will be mega (or 'beast' to use the new 'in' word according to 10 year olds :D ). I do actually like the way these programmes teach children good morals and behaviour, and I know Sasha has learnt a lot of social skills from them, those that she doesn't pick up so easily in general life.

The store is going to be amazing; it's based over two floors and will no doubt be crammed with merchandise Sasha will love. We're not allowed to buy anything tomorrow, but that's fine as long as I pre-warn her. That wouldn't have been the case a couple of years ago, but she has now learned that some things you have to wait for. There is a great schedule planned of fun and games for the children, and VIP guests including a life-size Dora to welcome us in. Sasha is not a fan of characters dressed up; she is still scared of them in the same way two year olds tend to be. The noise of the younger children all getting excited, and the general sensory overload will no doubt be very tricky for her. We were also invited to a lovely breakfast/brunch beforehand, but I know that sitting down to eat is not something Sasha does happily (waiting and food being two key problem areas!) so sadly I will have to miss out on that experience which would be pleasant if it was just me and my older NT girl.

However, I am going to try tomorrow, in the hope that we will manage an exciting trip out of the house for at least one day this holiday. I will no doubt be dragged around at top speed in an effort to get home again, I probably won't get chance to chat to the other lovely bloggers there, and I may have to resort to trying to find a quiet corner to watch the ipad with headphones (and get all those judgemental stares) for our youngest, but that's life. 

We are very lucky to be offered the chance, and I'm extremely grateful to the PR company who have chosen us to join in despite our girl's differences - that is definitely inclusion in my book. Even if it doesn't work well, it is worth a try. Staying in permanently is not an option, and whilst it may be harder for me to leave the house tomorrow than I'd like, I'm very well aware that others don't get this chance at all.

I write this blog to help spread understanding for our girl, but also to help all those other families who struggle with PDA everyday. Please keep in mind that we are not living with an extreme case of PDA, but others may be, and what they may need most of all is your support.

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Wednesday, 27 May 2015

Is it easier to just stay in?

Today is one of those days when PDA really sucks.

Sorry, I just couldn't think of a better way of describing it.

It's half term, it's a gorgeous sunny day, and I know there's a meet up going on at a National Trust property. I'd have loved to get out of the house and just 'do stuff' like other average families can do. Picnic, running through the woods, all that easy carefree kind of stuff. I could do that with our eldest girl.

Instead, I've spent nearly 2 hours trying to persuade our youngest to leave the house. Today, it hasn't worked. Eldest is not bothered because she verges towards lazy and would happily sit on the sofa all day unless we tell her we're doing otherwise. Then she might have a good moan about it, but she will go out, and do as we please, and generally find the fun.

Youngest PDA girl just doesn't work like that. As she gets older, I think she struggles more to remember the fun we have had when we've been out. I show her photos, but if she's in 'that mood' (by that, I mean that her PDA characteristics are showing strongly), then she won't even entertain looking at the photos anyway.

Of course I could MAKE her go out, as some people have suggested (although sometimes, now she is bigger, it would be a struggle to force her in the car if she didn't want to). The thing is, 9 times out of 10 there'd be no point, because she'd be so unhappy when we got to wherever we were going that she would insist we left straight away. She wouldn't 'cheer up' or just carry on walking next to us grumpily, she'd resist at the top of her voice and not go anywhere. 

It's important for me to carry on trying, as exhausting as it is, or else we really would end up staying at home ALL the time. Home is a safe place, that's where she is comfortable. It would drive me out of my mind.

So I have to pick and choose my battles, focus on just one or two outings a week, and be resigned to going with the (very slow) flow the rest of the time. We have managed some great days out, and happy family times. Life's not so bad, it's just not how it would have been.

(sorry I won't be seeing you today Mammasaurus​, Being Mrs C​ and Actually Mummy​)
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This is our PDA story (week 14)

Welcome to week 14 of 'This is our PDA story'. This series tries to explore the many aspects of living with PDA (Pathological Demand Avoidance).

PDA is one type of Autism Spectrum Disorder, ASD (now also called Autism Spectrum Condition, ASC). It may seem to be a 'relatively' new diagnosis, but it was actually first realised in the 1980s, over 30 years ago. There's more information about the history of PDA on the PDA Society's website (www.pdasociety.org.uk)

This week may not be an easy read, but I think it's important that others understand how difficult living with this condition is for some families. It is sadly not the only story like this I've heard over the past 6 years since our own diagnosis. Too many people are sturggling to go on, and they need help and support - but there is so little of that out there.
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When no.1 was born we lived abroad. She was challenging from the start - dodgy scan at 23 weeks, born premature at 34 weeks, wanted constant 1 to 1 interaction, didn't sleep much. I always considered her to be challenging in a good way; all that constant attention seemed to make her incredibly intelligent. By 2 she knew all the letters of the alphabet, could count to 20 and know what it meant and spoke in 10 word sentences. Then we had to suddenly move country, leaving our insulated life behind. She seemed to turn from a permanently happy little person into one that screamed a lot lying on the floor refusing to move. No.2 arrived. No.1 never really liked her. I couldn't leave them in the same room together. But life jogged on.

I started trying to get help for her in 2009, age 6, when she started talking about wanting to be dead. That was 1st CAMHS referral. I was sent on parenting course. No.3 baby arrived in 2011. 2nd CAMHS referral in 2011 resulted in bereavement counselling for no.1. 3rd CAMHS referral started in 2013. By this time I had no faith in CAMHS. They had already spent 4 years telling me it was all my fault - lack of boundaries, lack of consequences, you know the script.

In Oct 2013 I 1st approached social services for help. By this time active school refusal had begun. She was 10. Unluckily, the allocated social worker seemed to be stuck on proving that all behaviour was a result of my inadequate parenting. The SW told lies, was manipulative, threatened me with removing the children etc etc. The on-going trauma of multi-professional meetings began at school in Feb 2014. I was very honest from the start but all my words were not listened to or dis-believed. I started fighting for help and support, requesting the assessments that one needs in order to be considered eligible for help. The SW refused. Her line manager refused. I asked my MP for help. He didn't help. I enlisted an advocate. His excellent letters were dis-regarded. No.1 had been receiving DLA from Feb 2014, but social services refused to believe that she was indeed disabled.

At last, in June 2014 no.1 was transferred to a specialist CAMHS team and as a result, was diagnosed with ASD. Not an accurate diagnosis, but hey-ho, now at least I thought I would start getting help. Silly me.

The required social services assessments were at last completed in December 2014. Hurray, I thought, now I can get some help. Silly me. The indicative budget is just enough to cover 3 months of nannies. I need to use nannies so I can get out of the house to collect the wee ones from school/nursery and take them to her activities. So I wrote a realistic care plan and that is currently awaiting a response.

There has been 1 minor success. Social services have at last agreed to change my internal glass doors to toughened glass. I 1st asked them to do this (reasonable home adaptations) in March 2014. I wonder if it was the 4 days in and out of hospital (no.1 'escaped' twice) and the operation on the lacerations on her hand (the result of shoving your hand through a glass door) that has prompted the agreement of social services to actually spend some money? The doors are due to be changed in 2 weeks time. I won't hold my breath.

So here we are in April 2015. I still get no financial, practical or emotional help. Perhaps it will kick in soon, but I have my doubts. No.1 will not 'engage' with any professional, though she did do her very best from October -December 2014. That receptive time has gone now. She will not let any professional into the house. She threatens suicide and she means it. She will not let me talk to anyone on the phone. I have to wait until I'm out of the house to make any calls. She is in a permanent state of high alert; my little meerkat. Mind you, not so little. She is taller and heavier than me.

I must add, no.1 in some ways, is doing very well. She currently does one organised activity most days of the week. Obviously, a great deal of time and planning surrounds each excursion, not to mention the expense. (in order to access any activity no.1 requires a quiet house beforehand and on return, therefore siblings must be cared for elsewhere). Sometimes no.1 is happy. Her siblings get very little time with me anymore. It is very hard.

I would dearly love a real, live, human being to talk to, in the flesh. My day will come.
 


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As always, please do leave any comments of support below as they are much appreciated, and really help to let the writer know they are not alone, and not being judged.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:




Week 9 

Week 8 

Week 7

Week 6

Week 5

Week 4

Week 3

Week 2

Week 1 


Please do also visit the website for The PDA Society, www.pdasociety.org.uk, where there is much more information, and also www.thepdaresource.com.


Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.
read more "This is our PDA story (week 14)"

Friday, 15 May 2015

Pathological Demand Avoidance Awareness Day and Born Naughty?

May 15th was National Pathological Demand Avoidance Day. That's a bit of a mouthful, isn't it?! Let's just call it PDA day for short, shall we?!

A programme called Born Naughty? was broadcast on Channel 4. This was a hugely important moment for me. As I understood it, the 'professionals' (some like to call them practitioners) on the show would diagnose 9 year old Honey with Pathological Demand Avoidance, a certain type of autism which I'm hoping regular readers of my blog will by now know all about.

There were complaints about the title of the show, as many feel that children such as ours are not 'born naughty' but are in fact born with a hidden disability. They have a different way of thinking and living, and much higher anxiety levels when faced with everyday demands when compared to the majority of their peers. The title was of course created in order to cause a stir, but it is important to notice the question mark. The question is to get us all thinking whether any child is 'born naughty' or whether parenting and conditions have a large effect on how a child develops.

The predictable media storm broke out on Twitter during the show, largely due to a certain individual, who obviously needs help herself, outpouring vitriolic comments about not only the general parenting involved, but also the weight of the child. I'm not going to dwell on that evil-ness (is that a word?!), though of course many others have. For me, the old phrase 'no publicity is bad publicity' runs around my head and I see this show as a watershed moment, a chance to have PDA confirmed as a real condition, that many have to live with every day. I've heard accounts from people I've met of how their children have been wild and out of control, threatening with knives or wanting to kill themselves.

It's been over 30 years since the first studies and recognition of PDA, and yet so many practitioners are still too sceptical or scared to diagnose it. We need more people to listen and to understand that this is not bad parenting, it is not being naughty. An early diagnosis and then using the correct strategies can make all the difference to a family. Although we haven't had a formal diagnosis for our girl, I am relieved that I had that 'lightbulb moment' early on and we adpated our lives before it all got way too stressful. We have been extremely lucky that everyone agrees with us and uses the best strategies. 

I realise that I am likely to spend the rest of my life fighting the ignorant people out there such as those showcased on Twitter last night. Actually, I won't fight, I will take the words of an inspirational blogger friend of mine, Hayley from Downs Side Up - what we all need to do is 'gently change perceptions from within hearts'. If I can achieve only half of what Hayley has, I will be proud. I'll never give up though; I will do it all for my gorgeous girl.



PDA is a type of autism. Children diagnosed with PDA are autistic; they are not naughty but they 'can't help won't'. This phrase is a perfect way of describing how difficult they find it to comply with everyday demands, even those that may bring them joy (such as 'put your shoes on, we're off to Disney').

The first port of call for anyone who thinks they recognise signs of PDA, in either their own children or those they teach at school, should be The PDA Society. Please check out their website at www.pdasociety.org.uk.

For further views on last night's programme, please try these blogs by other writers with experience of PDA too. Don't judge until you have lived it yourself.

chloe-and-me.blogspot.co.uk

weebitsomething.blogspot.co.uk/2015/02/a-new-excuse-for-parenting-failure.html

aspernauts.wordpress.com/2015/05/15/15th-of-may-is-pda-awareness-day

dinkyandme.wordpress.com/2015/05/15/pda-awareness-day-and-dinkys-annual-review-shows-that-awareness-is-sorely-needed

understandingpda.com/tag/katie-hopkins

whatitmeanstofeel.wordpress.com/2015/05/14/on-born-naughty-damaging-misconceptions-and-katie-fucking-hopkins

rossmountney.wordpress.com/2015/05/15/born-naughty

Did you watch the show yourself? What did you think? Any thoughts on that certain individual and her madness?!



Post Comment Love
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Wednesday, 13 May 2015

This is our PDA story (week 13): Born Naughty?

Welcome to week 13 of 'This is our PDA story'. 
So here is a different kind of entry to the series this week. I'm hoping I'm not too late to tell you all about the television programme which is due to be aired on Channel 4 tonight.

It's called 'Born Naughty?', it's on Thursday evening at 8pm and you can check it out on their website  www.channel4.com/programmes/born-naughty.

Of course the title brings with it much controversy. The programmes in this series being aired by Channel 4 are intended to show the viewers families who are living with children with challenging behaviour, and to see if the behaviour is caused by their environment, living conditions and parenting, or whether the children really can't help it. 

The first programme from what I understand, tells the story of nine year old Honey who has waved knives at her parents and threatened her classmates. Sadly I have heard many stories of children like this, shocking as it may sound. Many of these children should probably be diagnosed with PDA (Pathological Demand Avoidance), but sadly so few health professionals have heard of this condition which is a particular type of autism. 

It's very important to me to spread awareness and make sure families like this receive the right support. In most cases, that is not a question of imposing stricter routines and punishment, as you may believe if you have only ever had to parent in a traditional manner.

Sasha was born autistic. She was born with PDA. It is not the way that I parent which makes her like that. I can parent our older girl in the traditional manner and it works fine for her, but not for Sasha. 

I'm not saying I'm the perfect parent, or that I always get it right, and I'm sure there are times that I do 'give in' to Sasha too easily. There are also times when Sasha is naughty. She's not perfect either! I tried to do the traditional parenting with her, just as I had with our eldest. It didn't work, and it wasn't because I didn't try those methods for long enough. Believe me, my life would be much easier if I could follow those methods; I wouldn't choose to make life this difficult.

Of course I understand why other people don't 'get it' - they don't have to live with it. I'd hope that they could be more open-minded and realise that they don't have all the answers though, and that not every child needs a 'good smack'. I'm quite glad I won't be able to tune in to Twitter at home tonight, as I know how many judgemental comments there will be from those who don't understand and who aren't prepared to listen. Shame on them.

I would dearly love to see comments here on my blog from anyone who watches the show and who has questions or thoughts either way. It's a lot to take in - believe me, I know! 




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PDA is one type of Autism Spectrum Disorder, ASD (now also called Autism Spectrum Condition, ASC). It may seem to be a 'relatively' new diagnosis, but it was actually first realised in the 1980s, over 30 years ago. There's more information about the history of PDA on the PDA Society's website.  

For lots more informationn, support and good strategies to follow for children with PDA, please do check out the main website:
www.pdasociety.org.uk

Linking up with Let's Talk Mommy:

Let's Talk Mommy
read more "This is our PDA story (week 13): Born Naughty?"