Friday, 17 October 2014

Who am I? What is PDA? What am I doing here?!

Just in case I have any new readers, and also for the benefit of all my lovely old (but young at heart) readers, I thought I should do a little update post.
Tamsin holding Sasha the month she was born.
I'm Steph, and I have two girls - Tamsin aged 9 and Sasha aged 7. Yes, over the years I have worried lots about whether I should have used their real names and put real information about them 'out there' on the big bad internet, but I guess it's a little late to try and remove it all now. So what you see is what you get. People can call me lots of things, but I hope you will always know that I am honest, and I try to be fair in everything I write.
Pre-diagnosis, in June 2008
Anyhow, I digress. I started the blog just after we got a diagnosis of ASD (Autistic Spectrum Disorder) for our younger girl. Sasha was just 2 and a half years old at the time, and so much was running through my head that I thought it best to write it all down. I also thought it would be a good idea to share with friends and family, to try and help them understand Sasha's behaviour seeing as they couldn't be here all the time.
Post diagnosis, in June 2009
The name of my blog may not have been particularly inspired (I didn't really know back then what I was getting myself into with the whole blogging community thing, else I might have given it a little more thought...!) but I knew that I wanted these ramblings to be about both my girls. Autism involves the whole family, and I've always been just as, if not more, concerned about the way it affects Tamsin's life too.

So Steph's Two Girls was born, over 4 and a half years ago now, and of course there are plenty of posts to show what has been going on in all that time. Suffice to say we've had ups and downs, but on the whole we have been very lucky and found our way through the Special Needs Jungle quite well (see what I did there, Tania?! ;)).
The girls sitting still together for a change!
Sasha attends the same mainstream school as her older sister. I applied for, and received a Statement of Special Educational Needs (SEN) for her just before she started Reception aged 4 years and 2 months. I managed that process back then with very little help; I had been told by local practitioners, just as so many other SEN parents wrongly are, that she 'wasn't bad enough' to get a Statement or any extra support in class. Last year, under a pilot scheme driven by big changes in the law (specifically the Children and Families Act), we agreed to change our statement to a new Education, Health and Care Plan. This is intended to discuss all the support which Sasha may need both at school and at home, and is a fairly lengthy process which can cause plenty of headaches. The law and language we have to learn as SEN parents deserves posts all of their own, so look out for those ones!

We initially had concerns just about Sasha's speech as it wasn't very clear, and she didn't seem to be developing sentences. It was then that we were referred on to a Paediatrician who gave us a diagnosis fairly quickly. Sasha's speech did develop but can still be a little unclear, especially if she gets upset, and she does sometimes have an unusual turn of phrase. An example of this was her sudden use of the phrase 'Take that, Punk' to an adult friend of ours in a jokey way this weekend - something she picked up from one of the Minecraft YouTubers. Another is when she replied 'oh, you mean snazzy?' when she was told she looked pretty and smart recently.

After much reading and research, we have come to the conclusion that Sasha has a particular sub-type of Autism called Pathological Demand Avoidance (PDA). Asperger's Syndrome and Classic Autism are two other sub-types.


The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.
People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, mainly because they need to control the interaction.
The main features of PDA (and how it differs from other sub-types of autism) 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.


Last year we asked for a referral to a specialist centre to see if PDA could be diagnosed, and we ended up at Great Ormond Street which you can read all about in my post GOSH - Centre of Excellence?. Their conclusion earlier this year after several tests and sessions was that Sasha has high-functioning Autism. However her avoidance and sensory issues mean she struggles to join in full-class activities; it takes her much longer than her peers to process instructions and she does lack social understanding of certain situations. A lot of her issues are driven by anxiety and the need to be in control. PDA is very different to ODD (Oppositional Defiant Disorder) and I'm aiming to write a post about that too very soon. Sasha's behaviour can be described as challenging in many ways, but fortunately for us she is never violent, and since we began using the PDA strategies and educated others on them, we have far fewer meltdowns. Sasha is generally happy and curious, which has helped get her through school so far.

Now though, the serious work has stepped up, and more is expected from life at school. Sasha needs support most of the time, but even with that support available she cannot always be persuaded or motivated to take part. Tests or exams are not ever likely to be achievable under 'standard' circumstances, and we are currently evaluating what type of school or education might suit Sasha best going forward. Sadly we haven't yet found anywhere that can truly meet her needs for secondary level, and so my search needs to continue.





On a personal level, whilst I haven't been able to return to full-time work due to the extra challenges, I have managed to spend a year working in the offices of a great local Autism and ADHD charity. I've moved on from that to help run Early Support training sessions for other parents who have children with disabilities, I sit on the local Parent Carer Steering Board and I work as a rep, attending at council meetings and presentations, telling my story as a parent and trying to influence outcomes for other parents locally. I'm also currently attending Brownies as a helper for Sasha. I hope to be able to spread the news about PDA a little more in the future too - so many families out there just need a little more understanding.

 


So there is never a dull moment, but I do occasionally reflect back on what a different path in life I have ended up travelling. If you made it to the end of my ramblings, thanks for reading and hope I haven't put you off coming back some other time - it's not all usually this serious, honest! Now I must get off here and stop browsing old photos....

Linking up to the wonderful #PoCoLo




Post Comment Love
read more "Who am I? What is PDA? What am I doing here?! "

Wednesday, 15 October 2014

Amazing Swim Achievement October #SSAA

This week I am very happy to be able to join in with the Small Steps Amazing Achievements linky being held over at the lovely Ethan's Escapades Blog.

We had a weekend away with friends to the new Center Parcs at Woburn Forest. Sasha has loved our previous visits to Center Parcs in Sherwood Forest; the swimming pool is always the main attraction. We weren't sure how she would take to the new place as it has slightly different facilities, but we needn't have worried; she took to it like a duck to water (pun intended!).


Sasha was always a water baby and loved being in the water for as long as possible when younger (still does!). We have tried some swimming lessons with her but with limited success as she has never been able to join in with group instructions. It got to a stage where all her peers had moved on without her and Sasha struggled to do what the teacher was asking - mostly out of fear of change, not fear of the water.

So along the way she has managed to teach herself to swim; small baby steps, at her own pace and when she was ready to push herself. We've been incredibly proud of how she has managed to do this, and relieved too.

This weekend she surpassed herself. She managed to put her whole face in the water (whilst holding her nose and wearing goggles), something she has never been able to do before. Even better, she then felt motivated enough to start swimming whilst doing that - our baby was swimming underwater!

It didn't stop there though; after just a gentle suggestion, she felt brave enough to let go of her nose, and before I knew it she was swimming underwater, a fair few strokes, without even holding her nose! Then she did it again.... and again and again. Now we've been made to promise we will taker her locally this weekend so she can try it again in a new setting. Amazing.

The secret to all of this? Leaving her to do it in her own time, and taking her to a place where she felt really comfortable (Center Parcs) and could enjoy a long stint in the pools three days running. Oh, and the fabulous slow moving Lazy River may have given her a little boost. Long Live the Lazy River I say! 



Meanwhile our other equally amazing but slightly bigger water baby was enjoying trying out the Aqua jetting - being pulled under the water by a motorised object. So glad they both love the water!

Also linking up to Loud and Proud over at Mama Owl's site - I am very proud!!

Mama Owl



Ethans Escapades
read more "Amazing Swim Achievement October #SSAA"

Sunday, 12 October 2014

{Siblings} October at Center Parcs

Every month, on the 10th, I've been snapping my two girls together for the wonderful #Siblings photo linky.


This weekend we were away having a fabulous time at the new Center Parcs, Woburn Forest, and these are my pics taken there. 









These siblings definitely love each other and we've made some gorgeous memories over the weekend - including Sasha swimming underwater for the very first time (in the lazy river, her favouritest place ever now) and Tamsin trying aqua jetting and being crowned a hero in the laser quest game.



dear beautiful

Although we were chosen as Center Parcs Family Bloggers recently, this trip to Woburn Forest was fully paid for by us and we weren't asked to write about this at all. We do love Center Parcs; they are places where Sasha feels very comfortable and so we are able to meet up and share happy times with our friends more easily than in unknown locations.
read more "{Siblings} October at Center Parcs"

Saturday, 11 October 2014

What makes you beautiful? What legacy are you leaving?

Dove: Legacy


When I first saw this video from Dove, I had tears in my eyes. What is it that makes you super emotional once you pass the age of 40?! Who am I kidding, I guess I've always been inclined to sprout a tear or two at the drop of a hat….

Some new research from Dove has shown that how women feel and talk about beauty has a profound effect on the self-esteem of girls around them. This video shows that young girls absorb the thoughts and feelings of family members, especially their mothers. It is important for us to be positive role models

I don’t think I've ever really stopped to think or talk about beauty for any length of time, but I was intrigued to know what our eldest girl has picked up from me. I decided to follow this Dove video up by exploring what Tamsin’s views on beauty were.

So without any discussion beforehand I asked Tamsin to write down her answers to the question ‘what makes you beautiful’, and this video below is the full unedited (although admittedly in her best ‘camera’ rather than natural voice!) clip of her reading them out:


Her list of what made her beautiful was: her hair, being kind, being very funny, how skinny she is, the way she'll always be there for someone if they need her, the clothes she wears, and how energetic she is (or lazy, her words!).

I'm definitely pleased that it wasn't all about appearance, and that she has picked up on some good attributes. I guess what has stuck in my mind most is the word ‘skinny’. It’s not a word I would ever use to describe anyone, along with ‘fat’. Over the past year I have heard Tamsin occasionally say that she is fat after coming home from school, so I've assumed it’s a topic the girls have discussed in the playground. 

I can't call myself slim; like plenty of other mums there is definitely a bit of extra weight hanging around after childbirth that I’d like to lose, but I’m not unhappy with my body and I don’t see it as a great problem. During my childhood I do remember my Mum attempting several different diets, but from that I learned that diets don't work all that well, they are more likely to have a yo-yo effect, and what you need to do is change your lifestyle. I've always been pretty happy with my lifestyle and am proud to say I've never followed any sort of diet, rigid or otherwise. Everything in moderation is ideal, although of course I am no saint!

At the same time as Tamsin, I was writing down my own answers to the same question, and my list was as follows: my smile, my eyes, the fact that I like to help others, my curves, my long legs and a good heart.

I have to admit that I struggled with knowing what to write; I don’t think many of us stop to appraise ourselves and it doesn't come naturally. My belief has long been that beauty is what is on the inside, not what shows on the outside. It is difficult to forget our vanity though and most of us are probably guilty of wanting to change our appearance in some way. I can certainly point out a few ‘problem areas’. I think most of them could be sorted if I could just have a suntan – it took me until the age of 40 to appreciate that I’m stuck with this skin bright white enough to light up a dark room. Tamsin has of course inherited this and I’m sure she’ll curse me more than once for it as she grows up!

Back to what really matters though - it's all about inner beauty for me. I'm older and wiser now, and I don't generally care about what people think of the way I look as long as I'm happy within myself. It's difficult to feel this way when you are a teenager though, so I just want to guide and support Tamsin through the difficult peer pressure times as best I can. She is beautiful, and I hope she continues to believe that about herself.

Dove have created an amazing website which includes masses of great information and some 1-1 workshops about self esteem. They have been written so that women can talk girls (aged 7-17) through certain situations and help improve their self-esteem. Please do go and check it out at www.selfesteem.dove.co.uk; there is so much useful information and advice.


This is a sponsored post; I rarely accept these but I feel this campaign is so important to highlight and will hopefully help me guide my own daughters through the difficult teenage years too.
read more "What makes you beautiful? What legacy are you leaving?"

Super Lottie doll #girlsuperhero

So recently I told you all about how happy the girls were to become Lottie Ambassadors. We love these dolls because of their size and wholesome appearance, and they are well suited to girls aged 3-9.

Well now Lottie has found another gap in the market - a Superhero for girls! I can't really remember any of these around since Cat Woman and Wonder Woman (showing my age there!), and certainly none of them in doll form, so I say it's about time.


Our 7 year old loves the idea of a Superhero but has not been overly taken with the traditional boy options, so this 'girls can be superheroes too' idea has definitely hit the spot for her. In fact since this pack arrived both girls have been playing happily with the original Lottie dressed up in the Superhero clothing, making up imaginative stories together. 


We were mightily impressed that this outfit was the winning design of a 6 year old from America; it looks just like her drawing (shown on the back of the pack). Love the motto too; I'd say it's very fitting for our family: 

‘Super Lottie has the power to be anything, to do anything, and to make the world a better place. She is unique and special in her own way’.

The clothing is sold in an accessories pack, which includes winged boots, a mask, cape and belt on the super shiny all-in-one.  




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.


read more "Super Lottie doll #girlsuperhero"

Friday, 10 October 2014

Pinkie Pie's Party

Recently we had one of those stressful days, one where I asked a question more than once in my head: 'why am I doing this?'


Throwing a surprise party for an inanimate object for the second time this year is something I never thought I'd be doing. The first was for Terry the turtle (a soft toy), about a month ago. This time it was Pinkie Pie's 5th birthday (not really, just in Sasha's head). I made it very clear that there wouldn't be a third time. I became mega snappy and stressy in the lead up to the big event (even more so than usual, ahem). However, as our family of four played musical chairs (cushions, to be precise) in our lounge I struggled to suppress the giggles at the insanity of it all.

Sasha's two small Pinkie Pie Ponies
My Little Pony is Sasha's latest craze (she doesn't get obsessed with things as such, but loves them for quite a while before moving on). As interests go, I think this one has been a good for her. The Ponies teach good morals and in particular all about good friendships, which is a subject which doesn't come as naturally to Sasha as it does to her peers. I'm sure she's learnt a lot of life skills, and songs, from the Ponies. I'm not quite sure how she came across them (ahem, YouTube), but in a way I'm quite pleased that it was independently, and not via her older sister.

It turned out that baking a special party cake was the least of my worries; after that I had the pass the parcel and the birthday presents to help wrap up. Then the bunting and general decorations to hang, and balloons to blow up. 

Last, but by no means least, was the birthday tea. All pink for Pinkie, of course. 
Playing musical cushions; the girls moving super fast!


I stopped short of buying another Pinata like the one we'd had at Terry's party, but apart from that this was pretty much close on a full blown party, minus the extra guests. Last time, before Terry's party I had had to quietly explain to Sasha that it wasn't possible to invite other children at very short notice to a made-up birthday party. She was disappointed, but luckily took it very well.



So why do I go along with these spontaneous, lovely, but time-consuming and very detailed ideas? 

Firstly, because if we didn't, the day would be ruined, as Sasha's level of upset is much beyond that I've seen from any other child. 

Secondly, I think it helps to let her use her imagination to develop social situations akin to real-life, even if they are somewhat staged. 

Finally, and most importantly, it makes Sasha happy. It's worth it all for this smile.











Post Comment Love
read more "Pinkie Pie's Party"

Thursday, 2 October 2014

Phonics fun with Biff, Chip and Kipper.. and Nintendo

Recently we were offered the chance to review Phonics fun with Biff, Chip and Kipper on our lovely Nintendo 2DS.


I don't know about the rest of you, but those crazy names are firmly stuck in my head after the Infant school years. Sasha can actually read quite well, but doesn't like to push herself forward too much and still prefers books she finds comfort in because she is familiar with them (the Dora books and Mr.Men range are still a firm favourite here).

So I thought it would be interesting to see if she could transfer the idea of reading onto her 2DS...

Phonics Fun with Biff, Chip and Kipper is more than just a reading book; it's a learning game and it comes in three different levels. We looked at Level 3, which is roughly aimed at ages 4-7.

Level 1 starts off with word sounds and Level 2 moves onto word formation. In level 3 you are presented with a shelf of books on a variety of subjects (so they are not all Biff, Chip and Kipper, a bonus there!) and the idea is that as you open each one and read, there are then mini activities to complete. Once completed, you earn a piece of a jigsaw puzzle, which is then intended to spur the children on to completing the next bit.

There's also the chance to practise handwriting, as words used in the story are revisited and tested. It can be a bit tricky for younger ones to have the patience to get their writing recognised, so I'd say frustrating for some but a good motivation for others to improve. There are also comprehension questions, and the chance to record your own voice - so plenty of variety to keep the children occupied.

Sadly Sasha didn't want to engage with this game, but I do put that down to her autism rather than anything else. The product itself looks really good; the only small niggle for me is that the writing in the books is a bit on the small side and I wouldn't want the children to be peering at a small screen for too long.

If it sounds like something your children might enjoy, do go and visit the Nintendo website for more details.

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.
read more "Phonics fun with Biff, Chip and Kipper.. and Nintendo"

Monday, 29 September 2014

We love Nintendo Tomodachi Life! (Review)

It's no secret that we are big Nintendo fans in this house; the girls love all of their games and as parents we are happy to admit to enjoying them too!

After our day out at Lollibop, where we spent some time exploring the Nintendo stand, Tamsin decided to use a chunk of her pocket money (which she had been saving) to purchase one of their newest offerings - Tomodachi Life.


'Tomodachi' means 'friend' in Japanese apparently, and this game is all about friends and watching them interact. You start off with your own Mii character, which you can customise by choosing eyes, hair colour, nose size, clothes and so on. You can also import Mii characters which you may have already created in other games, or take a photo of someone you know and this then generates a Mii itself - very clever!

The next step is to then give your Mii character a voice, and you can adjust the pitch, tone and accent settings for hilarious results. Personalities can also be dished out - 16 unique characteristics to be mixed and matched for anything from pushy and competitive to kind and honest. Here's one of Sasha's Mii creations - she likes candyfloss and crisps apparently.

The Mii characters then live on two islands which have a seemingly infinite array of activities to offer. Form bands and perform songs, go shopping for new clothes or have fun at a funfair, with or without your friends. The Mii characters can fall in love, decorate homes and even have babies - how exciting! You can also play mini games with your characters, so there's never a dull moment.

Honestly, I can say this is one of the best Nintendo games we have ever purchased for our 2DS (it's also available for 3DS of course). The girls go back to it time and time again, and never seem to tire of it. I'm tempted to have a go while they are asleep....


read more "We love Nintendo Tomodachi Life! (Review)"

Thursday, 25 September 2014

Can Supernanny fix everything?

Does 'traditional' parenting work? What would Supernanny Jo Frost make of this?

Yesterday parents were invited to a mass at school, to welcome the new starters. Sasha stayed in the room for around 30 minutes of the full hour which all the other children (and parents) stayed for. She started to get a bit stressed at the point where she, along with all her peers, was asked to go up to the front for a blessing with oil; she refused. Quietly and without causing a huge fuss though, so that is definitely progress. Can't say I blame her for not wanting to, and I'm sure there were a fair few other children who were nervous or who would rather not have gone up. 

What amazes me always when I now attend these kind of events, is how compliant all the other children are - including my eldest girl. It wouldn't have occurred to me to notice before, because it's exactly how I was as a child too. Almost sheep-like. The others stay sitting down, quietly, because they are told to, and because they are taught that is the way they should behave. Most of them don't want to be there any more than Sasha does. Yes, some squirm, and fidget, and I'm sure there are lots who simply don't listen. They understand though, that there are consequences if they don't behave. While I think Sasha has now progressed to the point where she can understand that she should be 'joining in', and she is starting to see that she is 'different' (which will bring its own mental health challenges), it doesn't make her any more capable of sitting quietly and following 'the rules'. 

I think I've said before how relieved I am that we have an older girl who has been parented in the 'traditional' manner, with rewards and consequences, and standard parenting 'rules'. Whilst I'm not in any way suggesting I have it nailed, or that I am a perfect parent, I hope people can see that she is (most of the time) a polite, well-behaved, well-balanced young girl. Being the older sibling has meant that Tamsin hasn't copied Sasha's behaviour thankfully, though it has of course been very difficult for her to understand and live with at times. It may sound crazy to say, but it feels like Tamsin is my saving grace, the reason why others listen to me, and why they, for the most part, believe me when I explain how it is. Tamsin is my proof that it isn't my fault, and that Sasha's behaviour can't be blamed on my approach to parenting.

I feel for all the parents of children with autism, and particularly those with PDA (Pathological Demand Avoidance), who don't have another child at home to compare the behaviour to. In that situation I'd have questioned myself and my abilities as a parent even more than all parents do as a matter of course. On top of that, professionals would no doubt have questioned my abilities too, sent me on 'better' parenting courses. It happens, to so many. 

The truth is that 'traditional' parenting techniques do not work with children like Sasha. Standard autism techniques don't often work either. It's a case of using different strategies, of always having a Plan B, and of being flexible.

Funnily enough, the argument that is often used as an excuse for being inflexible in a lot of other schools (not ours, thankfully, we have been so lucky) is that one child can't be allowed to do something different from the others, because then the other children will want to do that too and their behaviour will deteriorate.

Interestingly, we have not found that to be the case where Sasha is concerned. Her peers just seem to accept the fact that she is often not there, and that she doesn't always have to do the 'boring' things that they have to. Before too long, most of them will also understand that it is not always fun to be Sasha, and to have these difficulties, and they may end up feeling grateful that they can be part of the crowd.

Children are amazing. They are all individuals, but most of them are capable of following the rules and being part of the main pack where necessary and expected. Supernanny has worked her magic on many families; families where discipline has slowly disappeared or was never there in the first place for one reason or another. I honestly don't think she could make a difference here.

Sasha will face different challenges in life because of her autism/PDA. Supernanny can't fix her. She doesn't need fixing. Sasha is amazing too.



read more "Can Supernanny fix everything?"

Wednesday, 24 September 2014

MAD Blog Awards 2014: Bloggers FlashMob

You'll have already seen in my last post that I did something a little bit crazy last weekend, at the Mad Blog Awards 2014. Well here is the evidence - video footage of our Mummy Blogger FlashMob! See if you can spot me.



Huge thanks go to Harriet and Sophie and the other helpers from Stagecoach, who very patiently taught us the dance moves. I still think they were a little demonic optimistic with a fast song choice, and plenty of 'dancer' steps in there, but we just about pulled it off I guess. What do you think?!


Mummy Bloggers Flash mob
Woo hoo! The Flash Mob are over here!

It was such fun to be a part of, wish I could do it every weekend! Cannot wait to see what next year's 'challenge' is.....

Here are some more photos of the event, all taken by the wonderfully talented Tom Arber from Tom Arber Photography:


Mummy Bloggers Flash Mob

Mummy Bloggers Flash Mob

Mummy Bloggers Flash Mob


Mummy Bloggers Flash Mob

Mummy Bloggers Flash Mob

Mummy Bloggers Flash Mob

Downs Side Up and Steph's Two Girls
Me with the lovely Hayley from Downs Side Up

Dr.Ranj CBeebies
Me and the gorgeously smiley Dr.Ranj!

read more "MAD Blog Awards 2014: Bloggers FlashMob"