Sunday, 29 June 2014

Center Parcs' June Blogger Challenge - on yer bikes!

The Tots 100 blogger challenge this month was to embrace Center Parcs' favourite mode of transport by going on a family bike ride. I knew it would be a challenge of rather large proportions, but I wasn't going to let that stop me dragging encouraging my brood out to the garage and strapping on their helmets.

Truth be told, I've been on a bike maybe errr... four times since giving birth. One of those was today. It's definitely not because I don't love cycling; I do, it's just that I always have so many other things to do inside the house and I find myself easily distracted by blogging.

So anyhow, I looked upon this as a great opportunity to get out and get fit, whilst laughing and joking with my beautiful family. I was inspired by the tip

'If your little ones are new to cycling, confidence and practice is key. I’ve found that concentrating on gliding, rather than peddling, helps children to balance in the early stages. Taking them to a park is a great, safe place to get them started on two wheels'

Sasha has not yet progressed on from stabilisers at the age of 7, largely due to her autism and her fear of failure, and of new things, and general fear all round. Tamsin, our 9 year old, recently had a new bike as her birthday present, but sadly Daddy did buy it just a little size or two too big for her, and so she's not quite as confident as she once was.

I'd had in mind to go round the local park, and try to set Sasha off free-wheeling down a gentle slope. She was having none of it though, and refused to give up her mini bike with stabilisers or to go further than the local park. Tamsin wobbled off successfully on big bike and soon picked up speed. She *may* have fallen off in order to stop, but I didn't see that bit thankfully. No harm done to her or the bike anyway. As I pushed Sasha along on the bike that is way too small for her, trying to wheel my own bike at the same time (Mr C was off supervising Tamsin), Sasha and I did manage a little chat, and she did vocalise her anxiety at not being able to balance. She talked about how she wanted to learn cycling so much but that she was scared. That was actually a great step forward for me, the fact that she could explain why she was refusing to do something, so I think we did actually achieve something today! I think we're going to need a little more building up to the big event (am thinking get her out on bike, blindfold her then take stabilisers off... do you think that'll work?!).

By the time we made it to the local playground Sasha had grumpily given up on the bike, and insisted on returning home for the scooter. Luckily we hadn't gone far.... so we swapped said bike for scooter and as you can see from the picture, she was instantly happier. I know that Center Parcs is also a great place for scooting, so I'm more than happy to let her carry on being confident on that for a while yet! Meanwhile Tamsin continued to grow in confidence on her big bike and I'm now looking forward to a lovely mummy-daughter bike trip. Via a coffee shop.
Happy at last! Oh what fun we had.... why are there no stylish bike helmets?!

This is my entry to the Center Parcs and Tots100 June challenge. If I'm chosen, we would like to visit Elveden Forest. 

Although in all honesty we would travel anywhere to any one of their sites!!!!
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Tuesday, 24 June 2014

#Britmumslive. What was it all about?

You may have heard, or seen (apologies for the non-stop Instagram feed), that this weekend I attended a big blogging conference called #Britmumslive. Around 700 bloggers, who cover all sorts of topics from food to travel, and parenting to beauty, met up at a lovely venue in London Town to listen, learn and be inspired.

So what did I learn?

1. Grass skirts are not a good look.

2. Deckchairs are a long way down and it's quite difficult to get back out of them.

3. I will regularly make myself look silly in the name of winning a competition.

4. Spending time with friends and meeting new people is amazing.

5. I'm a sucker for a personalised marketing ploy

6. I definitely need to brush up on my photography skills - and next time, take MORE photos!

Oh OK, it's true there was a little bit of serious stuff too... in fact, quite a lot. Sessions on topics such as better photography, SEO information, techie tips and how to write more eloquently (can you tell I missed that one?!). There was legal advice and a session on Google+ which was so packed I couldn't squeeze in!

Emma Freud kicked the event off with a very witty talk about how much she has achieved for Comic Relief. She is the tiara-wearing queen and must have loved looking out on the sea of bloggers wearing tiaras in her honour. 

My '#bestmoment' was definitely at the start of day 2, listening to Ben who writes the blog 'Life As A Widower'. It's a heart-wrenching story, but Ben is an amazing man who just seems to be able to tell it how it is, and he helps lift that taboo on talking about grief. It made me want to cherish every moment with my girls and remember to ask them what makes them happy so much more often.

Emotions were also running high as we listened to the inspirational Hayley from Downs Side Up (who is one of the most gorgeous people I know!) and Chris from Thinly Spread among others telling us their success stories about how they have made huge changes in the world.
#TeamHonk won a very well deserved award. Those three ladies inspired a whole army of bloggers to make a big change, by working together. We listened to some amazing bloggers read out their own keynote blog posts (I was so proud of my great friend @claireyfairey); there were a lot more tears.

I'm in awe of how such a big conference was put together and run so smoothly by the Britmums team (the Butterflies were fabulous, as ever). 

To me though, as always, it was all about the people. I absolutely loved meeting up with others in this great big blogging community and can't wait to do it all again!

Now it's back to the day job..... 😉
read more "#Britmumslive. What was it all about?"

Thursday, 19 June 2014

Britmums Live. Bloggers together again!

Britmums Live. Or should that be #britmumslive? *Squeals!* 

Tomorrow I'll be heading into London to meet up with lots of lovely other folk who all write blogs too. There'll be tea and talking and cake and goody bags (hopefully - I forgot to pick mine up the last time!). Maybe even a half-naked waiter or two (pretty please?!).
I'm Steph, and I started writing this blog in January 2010 - can hardly believe it's been four and half years now. Every May and June I struggle to post anything as our in-house birthday/party season kicks off, but I always want to come back to my blog. My head is always full of posts I'd like to write, but I rarely have the time. Even this morning I intended to get straight onto writing this post, but like a moth to a flame I couldn't help but read and comment on some of the other fab writers out there on the world-wide internet thingy.

So anyhow, back to Britmums. It's an event where hundreds of bloggers get together to share advice, learn how to improve and network with writers and brands. I've been to this annual event once before, in 2012. I wrote the following before attending that time, and when I read it back I felt it was still relevant now:

I'm excited. But I'm also nervous. And a teeny bit anxious.

Britmums Live! My first ever blogging conference. In less than 2 months time. What have I done? What have I signed myself up for? Will there be enough tea and cake?

It's true, that's what I'm really thinking. I've just watched the lovely video by the ever-so-friendly butterflies (see here for 2014 ones), and all I can think of is that there aren't enough of them to go round, and no doubt I'll be at the back of the queue, and they'll all have flitted off helping others by the time I get to the front. Herrumph. Oh well, as long as they leave the cake behind I guess I'll cope.

I'm not really a big-time blogger. More like a small-fry actually. No awards or even nominations for little old me. I'm still at that stage where I'm not sure if I want to be big. A pat on the back and the acceptance which comes with awards and recognition generally would of course be lovely. Blog comments are the best thing in the world - I don't think I'd ever have enough of knowing that people are out there reading and actually listening to what I have to say. I just don't really have the confidence to promote myself. I'm still a shy little girl; I don't know if you ever grow out of it. 

I started my blog for personal reasons, a diary for me and for my family to explain what was going on in our lives once we found out we had joined the 'Special Needs' community. I doubt I'd have ever started blogging if it wasn't for that - it's not as if I'd had time to twiddle my thumbs since giving birth the first time.

So in a way it feels right to me to keep it small, and personal - not that you can really call that worldwide web t'internet thingy personal. On the other hand I've always been an honest and open type of person, and I feel the need to share for both my sake and for the sake of understanding - spreading the word about autism is what I hope for. Maybe it'll get bigger, in time.

So anyhow, back to Britmums Live. What can I expect? By the sounds of it, lots of other 'novices' who would also like to meet people. What happens if they're all talking to each other when I get there? What on earth am I going to wear? Is my self-esteem really this low?!

I'm wondering now why I signed up in the first place.... oh yes, I remember, first and foremost it was to meet my old school chum who I've not seen for 29 years (cripes!), and then it was to hear some amazing ladies speak, and to learn anything from those other established bloggers on the list whose words I love reading. Maybe I won't be doing that much talking after all......

So that's it in a nutshell. I still have no idea what to wear and I'll be packing last minute as always. Panic and excitement are setting in.

Even though I've been blogging for a while, and I've now been to four or five events where I've met some fantastic people, I'm still nervous. I know more people now to say 'hello' to, but I don't think I'll ever be comfortable with butting into others' conversations, or with walking up to complete strangers and saying 'hi'.
Above is a picture of me and my two girls - my reasons for blogging, my reasons for living. 
So if you see me, and you're a bit braver than me, please do stop me and say hello because I'd love to meet some new bloggers to chat with! To the 'old' bloggers I do know, can't wait to see you again!! *Squeals!* *runs off to find a tiara!*

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Tuesday, 10 June 2014

Siblings {June}

It may be a little late in the evening, but I'm determined to join in this month's Siblings photo linky on the right day for once!

We popped into town to buy Sasha some new shoes after school, and there were a few hugs and giggles in the shop - a relatively painless process overall amazingly!

As per usual, I couldn't pick just one photo of the girls from today, so I'm giving you the usual collage too. These are all the out-takes, including the three taken whilst waiting to cross the road and the girls were obviously getting a bit giddy....

Once back home, I persuaded them outside especially for a photo as the skies were so blue and I knew they'd make a great backdrop... sadly the good moods were short-lived out there as tiredness kicked in, so just the one shot worth adding:

dear beautiful
Thanks to all the lovely ladies running this fab linky!

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GOSH - Centre of Excellence for High Functioning Autism?

I'm going to have to admit to being 'a bit' disappointed.

Nearly a year ago now, we made our first visit to the Social Communications Disorder team at Great Ormond Street Hospital (GOSH). Our paediatrician made a referral there for Sasha in February 2013 after we had asked for a more detailed diagnosis. We did this because we felt the term 'autism' doesn't describe her fully. We've always agreed with the diagnosis that Sasha is on the autistic spectrum, but as I've written about many times before, we do feel that she shows all of the signs of Pathological Demand Avoidance (PDA). So we hoped to get an opinion on PDA from some experts.

We had actually asked for a referral to the Elizabeth Newson Centre, where the experts in PDA reside, but as that is not in our county (it's located in Nottingham) the health practitioners were unable to refer us there (for cost reasons). They did however agree to send the referral to the National Centre for High Functioning Autism at Great Ormond Street, and luckily the team there, who work on complex cases, agreed to consider our girl.

Initially I was very pleased that we might get that detailed information we were looking for, and I was riding on the crest of a wave. About a week before our appointment I read more about the GOSH centre online and kind of fell off that wave as I realised they were unlikely to give us a PDA diagnosis. The clinic there now only diagnoses with the umbrella term 'Autistic Spectrum Disorder' (ASD) as per the DSM-5 medical regulations. 

I still hoped that the reports might give us, and others, more of an insight into Sasha and her characteristics. I have still not come across another family with a young girl like ours - there are hundreds of parents on the PDA Facebook group who I am in contact with, but a large majority of those children seem to present more like a child with Asperger's would - that is to say, they have quite advanced language skills, and can generally manage to follow rules at school (although with difficulty, and it does cause them huge anxiety). Sasha displays the same avoidant behaviours at school as she does for us at home.

Last June the whole family including our eldest girl had an initial meeting at GOSH, in a small stuffy room, and we were all asked lots of questions about how life with Sasha had been. They tried to talk to Sasha directly, but she wouldn't respond to them at all; I knew this to be sheer anxiety from the unusual situation rather than petulance. 

More than a few months later (actually seven months, due to staffing issues in the department), we returned for the in-depth testing. I've written about that day in great detail in Great Ormond Street Visit: suffice to say, it wasn't a huge success. Mr C and I were interviewed ourselves in a different room that day and our responses fed into a certain type of assessment. 

Sasha wasn't keen on returning to the hospital a couple of months later, but we bribed encouraged her with the promise of chips afterwards. On that visit she did actually manage a full hour of a Speech and Language assessment, albeit with us parents in the room aiding and abetting her. The Speech Therapist was very pleased with the results, and stated that her Language Memory score placed her in the top 12% of typically developing children of her age where English is their only language.

We did make one more visit with her at the end of March this year, when the psychologists tried to complete some more of the original cognitive tests. Mr C and I remained in the room once more, but it wasn't a great day (again) and the doctors decided we should have the feedback based on the available test results. 

So just before Easter we received our verbal feedback. As suspected, the team were not able to diagnose anything other than Autistic Spectrum Disorder, but they did suggest that Sasha would fit under the 'banner' High Functioning Autism. They talked us through the scores for the tests she did complete, and touched on those she didn't, without really agreeing that the lack of completion was due to demand avoidance. They did admit that 'most' children they see are at least willing to try the tests, even if they are not able. Not so for our girl.

Today, almost a year after we were first at GOSH, and after some repeated chasing of the paperwork, we have received the final written reports. I would share with you what they say, but there are 26 pages in total. A lot of those words however, are our own words describing Sasha - so in short, they are telling us what we already know. The tests results are just numbers which wouldn't mean a lot to you, but I can say that her Perceptual Reasoning skills are within the superior range (she would score equal to or higher than 94 out of 100 children of the same age group), her Verbal Comprehension abilities are in the average range, her Working Memory is within average/low average range, her Processing Speed is low average, significantly slower than her cognitive ability, and she finds Executive Functioning very challenging.

The most telling sentence of the whole report however states 'it was not possible to calculate a FSIQ (full-scale IQ) for Sasha'. So where the above abilities lie in average-low average ranges, I think it's true to say that assumptions were made in these areas, because our girl avoided answering all the questions. We can't put a number on how intelligent she actually is, because she finds it too difficult to co-operate.

Does it really matter? Do I care how 'intelligent' Sasha is? Is it any 'better' for her to be high-functioning than if she had a learning disability? No. Just different. At the end of the day, she is not going to be like Stephen Hawkins or Bill Gates. She'll still just be Sasha. But receiving her education in the best possible way, suited to her needs, IS important to me, and right now I need help in figuring out what, how and where that is.

The reports from GOSH have given me new figures and phrases, but their suggested strategies to use for our girl are mostly those already being used or discussed by both us at home and by school. 

So what now? None of this changes how she 'is' of course, and we knew it wouldn't, but I guess we were hoping for... something. What? Something more tangible, some direct help? Some views which would help reinforce our own and confirm that she needs a different way of learning? Maybe. We're not ungrateful for the reports, but we have reached the conclusion that our GOSH visits were a lot of effort for very little reward for Sasha.

I'll carry on looking for that unthinkable dream; some help in finding what is best for our youngest girl. I hope she can reach for the stars.

For more reading, here's all the posts detailing our referral and trips to Great Ormond Street in date order:

1. PDA Pathological Demand Avoidance

2. Birthdays Cakes and Great Ormond Street

3. PDA Pathological Demand Avoidance have you heard of it?

4. Great Ormond Street Visit: High Functioning Autism or PDA?
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Friday, 6 June 2014

Alphabet Project: C is for Carefree and D is for Dandelion

Oooh, you know how I can't resist a good photo linky, but I never have enough time to blog as much as I'd like to? Well, yes, I'm playing catch-up again. 

The lovely Charly over on PODcast blog has set us a great #alphabetphoto linky challenge and this week it's D... last week was C and I didn't quite get around to it, so I'm putting both together now!
My C is for Carefree

and D is for Dandelion

Both pictures taken on the same gorgeous day in a park near my hometown. Look out for E coming next week!!

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Thursday, 5 June 2014

Could you design your own Mario Kart?!

So did you know that Mario Kart 8 for the Wii U has now been released? Much excitement here last weekend as we received a parcel to open.....

...and it was straight down to playing the new game of course! The verdict? A lot of new controls to learn, but once you've got the hang of them the game is 'kart-mazing' (groan). You can now build your own amazing machine on screen, and there are new racers to choose from. Daddy and Tamsin completed a questionnaire to find out which character they were most like - Daddy got Waluigi and Tamsin got Princess Peach! You'll have to play the game to find out more about them.

Mario Kart 8 new design by Tamsin
Mario Kart 8 new design by Tamsin
As Nintendo Family Bloggers, we were set a challenge to design our very own Mario Kart. Tamsin loved having this challenge, and she beavered away with some pens producing a very detailed picture in miniature... so I asked her to re-do it slightly larger and this is the result:
Mario Kart 8 new track design by Tamsin

There are loads of new race trackes in Mario Kart 8 and we were also challenged to design a new track. Tamsin's was a very wibbly wobbly affair:

What I loved most though, was how animated she became when describing all the different features and functions of her kart to me - so I made her present it all over again to camera so we could show you! My favourite bit is probably the seat which can lie right back flat into lazy mode.....

We were sent some paints and colour pens to inspire our new kart designs, along with a copy of Mario Kart 8 for us to review. All the views expressed here are our own.

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Tuesday, 3 June 2014

The Girls: #BahlsenBakeOff Film Stars

This half term we were excited to get the chance to take part in the #BahlsenBakeOff. A lovely hamper arrived with Choco Leibniz biscuits (my favourite!) and Zoo biscuits, aprons and hats, and a couple of recipe books.

The idea was that we should film our baking activities in the kitchen, in any way we chose. My two were keen on having a go as the stars - but separately, mind you; both wanted the limelight! So I've ended up with two videos to show you. Amazingly, although our youngest, Sasha, didn't see or hear Tamsin do her 'presenting', and we didn't discuss at all what went on, the two videos ended up remarkably similar! See what you think below (they're not very long, I promise):

Tamsin did a small amount of planning with a rough preparation of some script to get her going (actually I think she improved as she improvised more) and we had only three 'out-takes'. 

Our mini Naked Chef Sasha, on the other hand, waltzed into the kitchen and did it all in one go! Hmmmm, so which Nick Jnr characters get involved in YouTube cookery clips I'm wondering?! 'Remember, cooking chocolate is a grown-up thing to do!'

The delights of the #BahlsenBakeOff

Linking this up with the lovely Raisie Bay blog - finally, I've had time to blog about my Kids In The Kitchen!

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