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Sunday, 23 June 2013

Pathological Demand Avoidance Mind Map

Just a quick one to share this great diagram on PDA (Pathological Demand Avoidance) which I came across. A fab resource for teachers, it gives some great ideas on how to approach Sasha in the classroom (but a lot of this applies at home too....!):

Also take a look at www.pdaresource.com if you're interested in learning more - lots of great links on there!
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Wednesday, 19 June 2013

Bin Weevils Bling Collector Tin Review

We were delighted to receive a Bin Weevils Bling Collector Tin to review recently.

What? You don't know what one of those is? Well let me enlighten you:


If you look further down, you can see what was inside this shiny tin. Eight super special figures, which includes a 'blinged' Tink and Clott and six crystallized Bin Bot characters. Plus 6 clear Bin Bot plinths and a sheet of glitter stickers.

Still none the wiser?! Well Bin Weevils are a great online game, a bit like (she whispers, arch enemies, don't say I mentioned it) Moshi Monsters. But different of course. It's a 3D online virtual world, where children adopt a Bin Weevil which they can then decorate, play games with, build a nest for and so on. It's free up to a certain point - like with Moshi, you can buy monthly membership to enable more features. Tamsin had previously enjoyed playing on the computer game, so she was delighted to receive this tin of 'real' (instead of 'virtual'!) play pieces. For some reason, she particularly liked the fact that the figures seem to go a little bit 'gooey' when dipped in water!

There are other playsets available which would extend play - this tin retails for around £9.99 and would make a great gift for any fan.

We were sent the above toy for the purpose of this review, but have not received payment. All the views expressed here are our own.
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Monday, 17 June 2013

Birthdays, Cakes and Great Ormond Street

May and June are always slow blogging months for me, mainly because I have so much going on in 'real' life that I struggle to find time for the computer! I do miss it though, so I thought on the eve of my 41st Birthday (yes, I am that old, really, I know I don't look a day over 35, thank you....) that I would do a quick update of what's being going on.

In a nutshell, birthdays. Oh and a Holy Communion, work, half term holidays, OT (Occupational Therapy) appointments and a couple of other bits and bobs too. 'Busy, busy, busy, always busy, lots to do', to coin a Sasha catchphrase.

So I thought I'd just drop in a couple of pictures to pass the time.... A snapshot of the proof of a lovely family Holy Communion picture, along with our gorgeous Angel:

My two birthday cakes for the girls this year. Tamsin's 8th birthday cake in May, a One Direction Disco Ball cake, done to her very specific blueprint:
One Direction Disco Ball Cake
One Direction Disco Ball Cake

Followed by a bright yellow Numberjacks 6 cake for Sasha yesterday (which was going to be a chocolate hedgehog until a week ago - luckily she gave me just enough time when she changed the brief!):

Numberjacks 6 Six Cake
And look away if you're squeamish... roughly what the scar on my thumb will look like after not being quite careful enough with the knife whilst sculpting the cake. Do not do this at home:
So I wonder what gorgeous creation I'll get for my birthday tomorrow?! 
Actually, my girls are like me on the cake front - I don't particularly like eating them, I just enjoy decorating them. Shame I do enjoy most other bad foods though, waistline never seems to go down....

Tomorrow we are off to GOSH/Great Ormond Street (yes, birthday treat for me!), to see the team who specialise in High Functioning Autism. I'm a little nervous, despite requesting the appointment ourselves and having to wait 5 months for it, as I'm not quite sure what to expect. It's two and a half hours, and it'll be a lot of talking and questions to answer, for us and for Sasha. Let's hope she likes them and agrees to stay longer than 10 minutes!

Part of me is hoping that they will agree with my thoughts that Sasha has PDA (Pathological Demand Avoidance), as to have a professional put that in writing will just help smooth her transitions a little more. On the other hand it won't really change who Sasha is and the fact that people really have to get to know her and not just treat her as any other child, or indeed as they may treat any other child with autism. 

There's that old saying: 'if you've met one child with autism, you've met one child with autism'. Sure, there are some common traits, but I see few between Sasha and other autistic children I know, and few between Sasha and other NT children I know (like our older daughter!). However I do know she has some truly amazing traits and we love her to pieces - never a dull moment around here, that's for sure!
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Friday, 7 June 2013

Paultons Park part 2 - Queue Assist Policy.

So what really happened at Paultons Park? Well, you can read my previous post, and all of that did indeed happen, and it was a fab day out.

However, with a child with autism, and specifically for our girl with PDA (Pathological Demand Avoidance - read about that in a nutshell here), there's a lot more that goes on behind the scenes than just the 'usual'. Before even leaving the house, there's more planning than there would be if we were just taking our elder 'diagnosis-free' child for a day out. We have to be very clear in advance about what we expect to happen on the day - how long the car journey is, how long we will stay in the Park, which rides Sasha is tall enough to go on etc. We no longer use a visual timetable for her, and it's nice to be able to be a bit more flexible, but it still helps to show her pictures of where we are going or the website (Paultons Park has a great one - https://paultonspark.co.uk/). We try and prepare her for all eventualities and certainties - lots of people, noise, long queues and a limit to the spending are all mentioned of course.

Paultons Park has a great, exemplary policy for disabled visitors. They have a 'Queue Assist' scheme. As quoted on their website:
"We recognise that certain guests require additional assistance in order to fully be able to enjoy their visit to the Park. Apart from all the facilities mentioned above we also offer a special concession to guests who may have difficulties in queueing. This may be due to difficulties in understanding the concept of queueing, having problems with everyday social interaction, have a limited capacity to follow instructions or to understand the emotional feelings of others or may become agitated or distressed having to wait for extended periods of time. We are also able to offer this concession to guests who are wheelchair dependent. Queue assist does not apply to catering or retail queues."
This Queue Assist policy gives disabled people the ability to go to the exit point of a ride and not have to wait in line. For us, this is a lifeline, and enables us to enjoy a family day out together when it may otherwise go pear-shaped very quickly.

You see, I don't know if I've mentioned it, and I don't want to harp on about it or make it sound like I'm complaining, because I most definitely am not. Sasha does have a disability - it's just that it's a hidden disability. She struggles to understand the social rules that all of us other 'muggles' somehow pick up and learn in childhood without much teaching going on. Of course I've explained to her about queues, and she can see that everyone else stands in them, but generally there are other outside influences which make queueing very difficult for her. It can create huge anxiety, and yet she's not really aware of why she becomes anxious; nor can she put into words and explain to us what is happening. Too many people, too much noise, but generally just the waiting around.... and yet I will admit that on some days she can cope with all of these things, somehow block them out. She just can't manage that every time.

Sasha doesn't understand several social concepts, such as a teacher or her elders being in charge - Sasha lives in Sasha's world, where she needs to have control of what happens and when. It's not selfishness, although it can seem like it; it's really just anxiety and lack of understanding and awareness on her part.

This impacts us in other ways as a family. We do often ask Tamsin to let Sasha have that control, and make decisions on where we go and what we do when, in order to avoid the meltdowns and the inevitability of a spoilt day for everyone. We try to be fair to Tamsin, and in order to do this and give her some freedom we will often split into two halves as a family so that both girls can have their fun. Tamsin would actually stay with us and wait while Sasha went on rides of her choosing, but conversely Sasha would not generally be happy to wait around and watch Tamsin having fun. Patience is a very hard thing to teach to someone who cannot understand the reward it may bring.

For us, the reality of not having the Queue Assist pass would mean a much shorter day out, with us having to leave after Sasha had a meltdown about trying to wait in a queue. So I thank Paultons Park for having this policy and enabling us to have a fab family day out.

However, I do feel bad about it. Particularly at Paultons, where Sasha's key interest is Peppa Pig - all those rides are of course aimed at toddlers. Toddlers who also generally are not know for their patience, and who are likely to kick up a fuss at the waiting, and being bored. There are those parents who get annoyed by what they see as 'queue jumping' rather than 'queue assisting', and there are those who will show that displeasure with 'looks' or even with words. A lot of this issue is down to awareness - I'm guessing a lot of 'normal' parents have not heard about this fab policy, so have no idea why I suddenly appear with my gorgeous smiley daughter who looks 'normal' and get to go on before them. I can sympathise with that - I also would have had no clue about this policy before I needed to, and may have been equally confused (although I never would have confronted anyone about it!). Sadly there are those, who even once informed about this policy, would still be 'sniffy' and disgruntled about it.

The thing is, those toddlers in the queues, whilst they may complain, and whinge and cry about having to wait, WILL still wait 9 times out of 10. That there is the difference. They are learning an important social lesson while they wait. We've tried that with Sasha, but it just doesn't work. That's because she has autism, not because we are rubbish parents. I would be SO happy if I could just go and wait in line, with both Tamsin and Sasha, and have a 'normal' day out.

When we first entered Peppa Pig World, Sasha was completely overwhelmed by the people, the queues, the noise and the choice. We nearly didn't go on any rides - she ran between them, saying yes but then no several times, whilst Tamsin just wanted a go on anything. We queued for George's Dinosaur ride, but as we read the rules and realised Sasha would have to ride along, rather than with me as she has done previously, Sasha crumbled and wanted to leave the line. Thankfully, later in the day we were able to come back to it and Sasha did brave it alone and enjoy, as you can see:


Although it can be difficult, we don't just take advantage and give up trying to teach Sasha about queueing. For the first ride we went on, the queue was probably around 5-10 minutes long. So I waited in line with Sasha and Tamsin, and she was distracted by putting on sun cream and by trying to take in all of the other rides nearby. Ironically, as we waited, the ride operator spotted Sasha's armband (she was quite calm and happy!) and came over to tell us we could skip to the front if we wanted! Only slightly embarrassing, but it was very attentive and sweet of him to notice and to care. I explained quietly that we were trying to teach her waiting, and he left us to it - thankfully Sasha wasn't aware of the conversation! I can see how confusing that is also though - if she can wait some of the time, why not all of the time, right? Well, we just have to pick our moments. Unless you can come and spend 48 hours with her to understand, you just have to take my word for it. 

An example. The next day, we took Sasha somewhere of her choosing, that she had been to before, and was happy to go to - Dinosaur Crazy Golf.

It cost us £25 as a family to get in, and we had a lovely time, right up until hole 6 of 18. At that point, for some explicable reason, Sasha dropped to her knees on the tee off point, and refused to join in any more. We don't know why - could have been the sound effects, could have been the queues in front and the waiting around, it could have been the weather. All I know is that I had to carry her round the rest of the golf course while Daddy and Tamsin battled on valiantly. It was tempting to go and ask for a refund, but I don't think they'd have understood that. I don't really understand it! But I do know, that you can't make her do anything she doesn't want to do. I can also tell you, we don't 'queue jump' lightly, with the aim of getting something out of the system. We do it because we need to, for all our sakes.
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Paultons Park and Peppa Pig World Fun

How was your half term holiday? We had a lovely week off, although it already seems like a distant memory now we're back in full swing on the school runs. 

I'm going to split our story of a fabulous day out at Paultons Park (Peppa Pig World!) into two posts, and see if you can spot the different angles I'm coming from.

We drove down to Southampton on the Sunday of half term. I'd wanted to combine it with an overnight stay (the girls just love a hotel room!) but Mr C wasn't so keen. Luckily it only took us just over an hour and a half to drive there as we didn't encounter any traffic problems, phew! Sasha is not a happy traveller in the car if it involves a journey longer than 20 minutes. We know we are extremely lucky that she has not yet been physically sick in the car, but the travel does make her very sick - you can see the colour drain from her, and she becomes what I call 'quietly distressed'. I know that sounds like a contradiction but I see how upsetting it is for her - she wants to leave the car, but knows she can't. Fortunately the 'reward' at the end of the drive is often just enough to get her through the travel without trying to open the car door and leave (yes, we still have the child lock on for her; you never can tell when she might change her mind!).

So anyhow we arrived just in time for the park opening at 10am, and were delighted to see there wasn't yet much of a queue. We had bought tickets online in advance - cheaper and the queues to get in with a pre-printed ticket are generally smaller.

We headed straight to the Peppa Pig World section of the park and saw that there were already some fairly long queues for rides. We realised though that they were nothing how they'd look like towards midday, so we took our chance and went on Grandpa Pig's boat ride first of all, followed by a quick trip in Peppa Pig's car. 

After that, it was already getting busy and Sasha had only one thing on her mind - the Muddy Puddles Splash Park! So I toddled off there with her whilst Tamsin and Daddy went to find a few of the 'bigger' rides nearby to have fun on - Tamsin loves the Viking Ship and the Jumping Bean. 

Sasha played happily in the water for a good 40 minutes, until she decided abruptly she had had enough of that. We joined back up with Daddy and Tamsin and went to explore the rest of the park - the big Skyswinger ride is one of the few 'grown-up' rides that Sasha really loves (can you zoom in to spot her big grin?!).

Along the way we played in playgrounds and sandpits - always seems strange on a big day out when they choose to do something which they could otherwise do at home for free, but it certainly makes them happy!
Tamsin loves the bigger thrill rides such as the rollercoasters, and the Edge, so Sasha had a very quick go on a bouncy castle while Tamsin did that. Then we drove some racing cars round a track (Tamsin with Daddy, Sasha with Mummy) and I think both girls agreed that Mummy was the better driver.

Next we spent some time in the main big splash park - well, when I say we, I mean the girls went in and got wet whilst we had the chance to sit down and rest our feet for a short spell. After that we headed back to Peppa Pig World to go on the rides we hadn't been on at the beginning of the day, and we were still there at Park closing time.

Sasha declared that we would have to go back for another visit soon to have a go on the remaining Peppa Pig rides that we didn't quite manage, and we all left happily, despite having been stripped of a few extra pounds in the Peppa shop on the way out (balloons and soft toys, Daddy's favourites...). Leaving the car park was also pain-free, no big queues for that, and we were lucky with the drive home too. So all-in-all a fab family fun day out. Top Marks to Paultons Park for a fab clean park with good facilities and friendly, helpful staff. Am guessing we'll be back soon.....!

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