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!

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.

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.....!

Monday, 27 May 2013

Make Time 2 Play

There's a great initiative called Make Time 2 Play going on at the moment, administered by the British Toy and Hobby Association and supported by Play England. The campaign was actually started in 2007 and has been gaining momentum ever since. The idea is that we should all make time to play (clue is in the title, geddit?!) with our little ones, whether that's outdoors or indoors, with toys or with imagination - any old how will do! It's the time that counts.

Dr Gummer, a resident expert on www.ukmums.tv, explains why play is so important for kids and not just a reward or a waste of time:

In the past, little thought was given to the importance of play and how it contributed to the developing child, so it is natural that some parents see it as simply a fun activity, a reward, or even a waste of time.

However, the government, teachers and Ofsted have all realised that play helps children learn. Incorporating fun themes to children’s learning makes the experience more memorable for them and also less daunting so they will be more likely to do it again – bingo, they’re learning!

There is a difference between helping a child to learn and pushing a child to learn. Books such as “Einstein Never Used Flash Cards…” explain how children who are pressured early on do not fare any better than children who are allowed to take their time.

The advice is simple: children learn best through simple playtime which enhances problem solving skills, attention span, social development and creativity.

When it comes to play, what’s most important are the social skills children learn. Relationships are the bedrock of society and children who play develop mutually rewarding relationships learn to compromise, communicate and negotiate, all of which give them much better outlooks for future careers and mental health.

The mistake that many people make is to believe that because you don’t always know what the child is going to learn through play, they’re not learning anything.

Even the most frivolous activity is beneficial for children as it helps them understand themselves better – learning what makes you happy and what makes you laugh helps children cope with challenges and acts as a buffer against mental health issues such as depression and anxiety.

So remember – play is vital to a child’s healthy development and not just something to be done as a reward or an afterthought. 

I'm all for 'surreptitious' and incidental learning. Having a child with PDA means it's trickier than usual to make suggestions of 'fun' things to do, and even trickier to get any obvious 'work' done - so I know how important it is to fit the learning discreetly into our play times. I think it's working, so far!

Visit the site www.maketime2play.co.uk for more information and some great ideas on how to amuse yourselves this holiday - and in fact every day. Rain or shine, you can always put down that smartphone (ahem) and spend some quality time with the children. You know there's nothing they love better, if you're honest.


Monday, 20 May 2013

Our polite, sociable autistic girl makes a new friend......

'Why don't we build the puzzle using the three special steps?' were Sasha's opening words to a little girl in the waiting room who was happily playing with a puzzle on the floor by herself. Of course I knew that Sasha was referring to Special Agent Oso, but I'm not sure the girl was - maybe Oso is common 5 year old language these days though. 'First we have to sort the pieces - into flat outside and corner pieces, and inside pieces. Then we have to build the outside, then we fill in the inside'.

All sounded very logical and straight forward to me. I had warned Sasha as she jumped up to go and 'help' the girl that she should be good and not try and take charge. I was pleasantly surprised with her friendly, if somewhat 'Oso-fied' approach.

Luckily the little girl was receptive to this sudden interruption and to being helped in a bossy sort of way. Sasha set about helping the girl sort the pieces as suggested.

'I'd like to have a puzzle like that' said Sasha, 'would you like to give it to me for my birthday?'.
Thankfully, bearing in mind this girl had never set eyes on Sasha before today, she did reply positively and assured Sasha she would ask her Nan.

Sasha does have a sociable and friendly way about her. She somehow knows how to be polite - as I think I've mentioned before, I rarely have to remind her to say please and thank you. Let's hope it carries on into her teenage years! It's really difficult to explain, but it's almost as if, despite not understanding why she has to do it, she just senses that social niceties are the right way to go about things. If I'm honest, I think she's probably picked a lot of that up from Dora and Oso, so all praise them!

I watched furtively from a distance as the two girls worked really well together. I could tell that Sasha was trying really hard not to take over and be in control, and it was really lovely to see their heads together as they chatted away.

After a good ten minutes Sasha returned to me, with a grin on her face. 'Mummy was I being a good girl?' she asked with a grin. 'Yes, you were brilliant darling' I replied. Her response?

'So can we go to the chip shop now then?'

Saturday, 18 May 2013

Aquarelle Watercolour Paint Set Review - Superb!

Recently we were sent a fantastic new product to review - the Aquarelle Watercolour painting set by Ravensburger.

Inside the box were three different fairy pictures on watercolour card, a double-ended paintbrush, five mini bottles of paint, a mixing/palette tray and a pipette for the water. Also included was an instruction book which gave great detail about watercolour painting.


The pictures have special water repellent outlines on them which meant it was very easy to colour in small details, and the finished result was amazing. Tamsin absolutely loved this product and took great care with it. 



The box suggests it's aimed at girls aged 8-13, but I think it'd be fine for younger ones too (they'd probably just need watching with squeezing the paint drops out!).Also available in horses and dolphins designs, and I even think that boys may like the Safari version!

These retail at £9.99 which I think is a great price point for a gift - and I'm very tempted to try the slightly larger World Cities version myself!







Disclosure: 
We were sent the above product for the purpose of this review, but have not received payment. All the views expressed here are our own.

Wednesday, 15 May 2013

PDA (Pathological Demand Avoidance Syndrome) Awareness Day - do you know anyone like this?!

There's a fantastic new resource which has been released this week which I'd love you all to take a look at (my blog is even included on it, lucky me!) www.thepdaresource.com 

May 15th is PDA (Pathological Demand Avoidance) Awareness Day. I know, I know, there's loads of these 'awareness' days around just now, right? Well this one is the one closest to my heart, so read on if you care just a little...

Sasha got her diagnosis of autism aged 2 and a half. I blogged about that in my first few posts. Even back then, I didn't feel it fitted exactly. Sure it explained a lot, but there were certain traits of autism which Sasha didn't really show. She had delayed speech, and delayed 'playing' compared to Tamsin. Most things, such as role play, she did eventually do, but probably about 6 months later than Tamsin had. I joined a group of parents who all had girls with high-functioning autism, and as they described their girls, there was a lot that didn't resonate with me. I initially assumed it must be because Sasha wasn't high-functioning, and yet she was (and is) very bright - numbers and foreign languages were a speciality at a young age.

So after our diagnosis I did more research. I think all parents of Special Needs children carry on with the research and the learning - to us it's important to find out any new ways which we can help our children. I came across the definition of PDA, and I could tick virtually every point when thinking about Sasha.

According to the NAS (National Autistic Society) website, the main features of children with PDA are:
  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people rather than things.
You can read about this in a bit more detail (but nice simple language!) by clicking here. The bit that resonates most with me is:

 'People with PDA are often very sociable and can display degrees of empathy previously not thought to be consistent with autism. Sometimes it seems that they are able to understand other people at an intellectual level but not at an emotional one. However, despite their use of social niceties, their social interaction is very often flawed by their inability to see the bigger picture, their lack of boundaries and their desire to be in control of the situation. They often understand rules but don't feel they apply to themselves. As children, this can lead to playground peer group difficulties. One parent described how "to other children he will happily act as if he was their mother - 'have you washed your hands' or 'don't put your elbows on the table' - but he doesn't have a sense of needing to follow the same rules."'

The main issue for Sasha and us is always control. Sasha has a need to have things exactly as she wants them - and there's not always a logical reason for what she wants. Some of it can be explained with autistic traits, such as liking routine, or sensory issues (when she absolutely would not wear socks - for a whole year!), but at other times it's driven purely by the need for control. Her choice of music in the car, or wanting her sister to sleep in the same room as her, or having chocolate for breakfast - yes, we've given in to all of these demands. Simply because we had to.

It's really difficult to describe, and I am very aware of how it sounds as if Sasha is just being selfish, or naughty, but I can assure you that she is not. It's as if her will is being driven by something entirely different to our other daughter. It may sound odd, but I know I can always make Tamsin do anything we want her to - she will react to reward systems, or bribery, and she just knows and accepts that we are in charge. Sasha does not understand this. She shows virtually no respect for anyone in authority, but not in a rude or intentional way. If she has decided she is not going to go out, you really cannot make her. It was quite an isolating experience when she was younger - leaving the house to go anywhere other than swimming or Willows became virtually impossible, and toddler groups were a definite no-go, as she just was not prepared to follow rules.

Of course, if I had to leave the house for an urgent issue but Sasha didn't want to, such as to get Tamsin to hospital, then I do know I would be able to, even if it meant finding a physical strength I've never used before. There's not much point doing that to just go shopping for example, as the ensuing meltdown would most definitely ensure you didn't get any shopping done.

It's like permanently walking on eggshells. We've learnt how to manage that now, so it almost becomes second nature - but it does mean that Sasha is generally the one in control. A recent description of her agreed - 'Sasha has subtle control most of the time'. I tend not to make fixed plans as I'm never quite sure what mood Sasha will be in on any given day. We need a purpose and Sasha's agreement for a day out - a general meeting in the park could work, but we'd most likely only be there for 10 minutes before Sasha decides she's off. And once she has decided, there is no changing her mind.

Next month we have an appointment with a specialist team for children with high-functioning autism at GOSH (Great Ormond Street Hospital). I've asked for this extra in-depth referral and assessment not because we don't feel Sasha has autism (she does), but because we feel so many of the PDA characteristics can be applied to her. The main reason for asking for a more expert opinion is because the strategies needed to teach and encourage and develop children with PDA are so different to those used for children with 'just autism' - for example, routine and visual timetables help, but so does changing them and going with the flow (Sasha's flow, that is!!). It's important to be flexible and understanding with Sasha - personal relationships are so key. 

I am already bracing myself for the fact we may not end up with a PDA diagnosis for Sasha, as I know from PDA support groups that Sasha is in no way extreme and we are very lucky indeed that she is actually so happy and loving and curious. We don't experience extreme violence from her - but then maybe that is because we have got so good at managing our lives around her?! I have been strangely relieved to read other blogs featuring children like Sasha - a brilliant one I would recommend is Pathological Demand Avoidance an autistic spectrum disorder.

If you've got this far, thanks for reading. Life is definitely not all bad, but it would help Sasha if more people knew about, and could try to understand this condition, so please do share.

Monday, 13 May 2013

Do you think it's acceptable to put disabled children down like lambs?

I've had something on my mind for a few weeks now, on and off. Today I just haven't been able to shake it at all. It's not pleasant, and it is difficult not to get really upset or really irate about it, but I'm far too tired for either right now.

Hayley, mum to Natty, a gorgeous model with Downs Syndrome, has blogged about it more eloquently than I can over at Downs Side Up. Please read her blog for fuller details (and very cute pictures of Natty!), but in summary I can tell you that there is a Councillor in Cornwall called Colin Brewer, who has actually said that he believes there is a good argument for killing some disabled babies.

Yes, really. It beggars belief (if you'll pardon the phrase. A bit like 'gets my goat' which was in one of Tamsin's books tonight and I confessed I'd have to google to find out where the saying came from and why!). He followed it up with other stupidities in his interview which you can read here.

How can a man like this hold any position of authority? Sadly the truth is that he was voted back in. That means that there are others who don't believe there was anything wrong in what he said. Some of them probably think it was just a 'slip of the tongue', but more worrying are the others out there who actually do agree with him.

As mother of a disabled child (for although it is hidden, autism is still a disability, an 'inability' to lead a 'normal' life), I am more than saddened by this. I'm shocked, horrified and actually scared for Sasha's future. Right now, and hopefully for at least the next few years, we are surrounded by lovely, caring friends and family who provide Sasha with lots of love and support. It's possibly the case that there are those on the outskirts at school who are not so accepting, but honestly I've not heard of any yet. If there are, then I consider it my job to spread understanding and help them appreciate differences.

As Sasha grows older, we do hope she will become independent - but that brings extra worry, as it does for any child of course. We know already that Sasha is far more likely to become a target for bullying than your 'average' child. That will be from immature children though, who we can hopefully do something about. How do we manage bigots like this man?

The first step in my opinion, is to ensure he does not remain in office. He should be publicly stripped of any power, and held up as a terrible and UNACCEPTABLE example. For this, we need your help. People power is needed, and I'd like you please to comment on my post or Hayley's and share our posts and tweets as much as you can. Please help me make the future a safer one for my daughter - for all our children.

Sasha, thankfully, is too young to understand any of this yet. But there are plenty of older children with disabilities who may well have read of heard of these comments - how do you think they feel?

Just in case any new readers have popped by, I can tell you that Sasha is our 5 (soon-to-be-6) year old daughter who was diagnosed with autism at the age of 2 and a half. She is charming, funny, polite, caring, loving, cheerful, curious, energetic, entertaining and determined, and we most definitely are glad of her existence in this world.




Sunday, 12 May 2013

Swimming. With smiles and giggles. But how to move on?

I had a big smile on my face as I watched Sasha in her swimming lesson today. Largely because she was enjoying it so much. For the first time since she started over a year ago Sasha made a friend, a boy who was happy to chat and swim alongside her. It was lovely to see her interacting with another child close to her own age. They were laughing and racing each other to the other side of the pool.

I still couldn't relax though; I knew how close it was to all going wrong. If the little boy had said the wrong thing to her, or if he had managed to beat her to the other side, the game could have been up. Half way through the last width she did in fact stop as if she had decided that was enough. Luckily the teacher chose that exact moment to declare it was 'horsey' time (where they sit on the foam woggles) and off she went again, happy to do her favourite fun swim activity.

There were two new helpers in the pool today with the teacher. That's another reason for nail biting as far as I'm concerned. Sasha is so dependant on having a good relationship with anyone who wants to persuade her to follow their direction. They need to let her take the lead, and let her decide what she is going to do and when. Kind of counter-intuitive for a teacher, I guess. The young male teacher tried his best to get Sasha to comply, with a smile on his face, but she was not taking that from a 'newbie' and was on the verge of leaving the pool, until her main teacher whooshed over to save the day and laugh Sasha out of her impending tantrum. Phew, I relaxed again, for a millisecond. Sasha was in a cheeky mood today. Instead of joining in the circle time, when the children were floating on their backs, Sasha decided to be the centre of the circle, kick-splashing the teacher as much as she could. Had she been made to stop, it could have been the end of the lesson for her. She was definitely testing the boundaries, and I was tempted to watch through my fingers.

She started her swimming lessons, and in fact continued, for a fair few months with me in the pool with her. Can you imagine how awkward that was, to be the only non-teaching adult standing waist deep in the water? Not to mention cold... She refused to do the bits of the lesson she didn't enjoy (such as putting her face in the water, or actually trying to take her legs off the bottom of the pool). However we persevered, and she now accepts that I no longer get in the pool. Before we got to this point, I'll admit that I did wonder a few hundred times whether it was worth continuing with the lessons.

She has progressed so much now, thanks to the patience of the swim teacher. The difficult bit, as always, will be the next transition. How do we move her away from the teacher she is comfortable with, on to the deeper part of the pool where she can't stand up, where she would be out of her comfort zone?

The truth us, we can try, but in all honesty if she doesn't like it, she simply won't do it and we could be back to square one. We'll have to give it a go soon though - Sasha is by far the oldest in her class and I think a 6 year old in with the 3-4 year olds might be stretching the teacher a bit too much...!


After the lesson we retired to the changing rooms, where for the third week running Sasha found herself opposite a young boy getting changed. Sticking her hand out pointing, she laughed out loud. 'Ha ha ha mummy, look at that wiggly thing!'. Cue head down and a few whispers from me, amidst thoughts on what book I can now buy to explain the human body and male/female differences to her - but she followed up with questions about what she has, if it's not a willie?! What do you call a girl's not exactly comparable equivalent?! Answers on a postcard (or in the comments) please! 

I just hope that all the poor boys Sasha encounters in the meantime are not scarred for life..... Smiley

Friday, 10 May 2013

Moshi Monsters 5th Birthday Party at Moshi HQ

So. Long time no post, and I'm definitely missing my blog! The run up to May and June are always mega busy for me though, seeing as they are my girls' birthday months. There's parties and presents galore to organise.... and this year we've had a Holy Communion and Ballet Show thrown in the mix right at this time too! Plus of course I am now a working mum again (part-time, ahem) so time is tight all round sadly.

That said, I just wanted to quickly drop by and tell you all about how lucky we were last week. We were super excited to receive an invite to the Moshi Monsters 5th Birthday Party at their snazzy new HQ in London.

OK, so it meant a late afternoon train and tube trip into the big city on a Thursday after school (when Tamsin should really have been rehearsing for the aforementioned ballet show, sorry teachers!), and a late evening to bed, right in the middle of Holy Communion preparations, but we knew we couldn't turn this opportunity down.


So off we toddled with our invite, with plans to meet Daddy in town, and the girls were as good as gold for mummy all the way there.

Moshi HQ was host to a busy, exciting and at the same time very laid back party. Perfect for the children. We started off with amazing face painting, moved on to cupcake eating and milkshake drinking and followed up with playing with some micro Moshis and the new playsets. We grabbed Moshi balloons, hung out in the tree house room with Moshi beanbags to lounge on and had a quick interlude for meeting the larger than life Poppet and Katsuma dancing to the DJ. Tamsin then found the swirly slide (yes, really, in an office!), which goes down a floor to where the giant ball pit is - we almost lost the girls in there! Next we went back for some Moshi tattoos followed by more mini hot dogs which seemed to be constantly circling the room along with some other great snacks, and then we tried out the dark room to show off the UV face paint in its best light (or dark...). In there was an air hockey game, which Sasha would LOVE to have at home, so it would have been rude not to... Next we helped colour in the Moshi wall and signed the outline of a number 5, popped into a Moshi photo booth then watched the artists do quick-fire sketches of all the Moshlings. Finally we gazed at the fabulous 5th Birthday cake and raided the pick and mix sweetie table which had been laid on for all - oh and we picked up a box of popcorn for the trip home!



I'd forgive you for thinking I was crazy, taking our autistic girl along to such an event. I just want to highlight what a huge success this all was for us. On another day, in a different mood, it could have ended so differently. But this time we were lucky, and thrilled!

In a busy, bustling environment which was assaulting all of our senses, Sasha managed to remain calm and enjoy herself. She did ask to leave 3 or 4 times, but unusually we managed to quickly persuade her to stay each time. Her biggest achievement was waiting over 20 minutes towards the end of the party in a non-existent line (i.e. a group where other children constantly tried to push in - boy, did I have to be on my toes there!) for Miss Ballooniverse. Sasha REALLY wanted that balloon. She nearly gave up a couple of times, but amazingly persevered - there's not much that she ever wants that much! Miss Ballooniverse (see her Facebook page here) was indeed very talented, and both girls were delighted with their creations which we managed to get home in one piece without popping, yay!

So a huge thanks to Moshi Monsters and @SeventySeven for the party invite but also for creating a fab brand and products that my girls love.

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