{Navigation Bar}

Tuesday, 29 November 2016

This is Our PDA Story (week 20)

Welcome to week 20 of my 'This Is Our PDA Story' series, where I've been introducing posts all about living with Pathological Demand Avoidance. PDA is a type of Autism Spectrum Disorder which is characterised by high anxiety levels and a struggle to meet everyday demands. You can find more detail on my page 'What is PDA?'. 

This week I'm very pleased to be able to bring you the words of an adult living with PDA. I like to imagine a bright future for our girl, and hope she will be able to understand herself better, so it helps to learn from the experiences of others. 

--------------------------------------------------------------------------------


I discovered pathological demand avoidance shortly after getting an Asperger's diagnosis aged 27. I had looked into PDA previously when searching for help with managing eldest's (Polar bear) behaviour, but for some reason I discounted it. Probably because the way I read it made it sound deliberate whereas I knew deep down Polar bear's behaviour wasn't deliberate. He was so much like me that I could understand sometimes why he acted the way he did, I just didn't know how to help. Then I watched Born Naughty and the boy on there resembled my Polar bear so much that I went back and googled everything to do with PDA. It was then that the penny dropped, what I was reading was describing us both. 

It's been little over a year since then and I know so much about PDA yet so little, everyday I'm discovering something new. I've learnt so much about myself, it's like rediscovering what it is to be human. I know why I struggle with even basic things and why, despite being Autistic, I love trying and discovering new things. I quickly joined a bunch of PDA Facebook groups and for the first time in my life I felt like I was among kin. I felt like I truly belonged. How can there be so many of us out there and yet still feel so alone our whole lives, only feeling truly at home after meeting online. I wanted to help spread awareness and understanding of PDA. I wanted others to know we were here and that they aren't alone. I wanted to help people. So I started blogging. Even if I only helped one person I felt that was enough, but I seemed to have helped many, and that makes me so happy, I feel like I have found my purpose in life.

Being a PDAer isn't easy, for years I just pushed all the anxiety and hurt aside and got on with things as best I could. I fought myself everyday to do what seemed to be a walk in the park for others. It seemed to me that I was just lazy or unmotivated, that I deliberately sabotaged myself. It's taken a lot of understanding and forgiveness to accept that it wasn't that I wasn't trying hard enough, it's that I didn't have the ability to do those things. 

For me, everything is hard. I make out like something is easy simply because, when compared against my more difficult days, it is easy, but when compared against other people's hard days, it's really, really not. I like to stress to people learning about PDA that anything and everything can be perceived as a demand. I say perceived because that's how our brains work, they see everything as a demand, as something to be feared and avoided. It doesn't matter how much I reason that there's nothing to be scared of, my brain is beyond my ability to control. That's why I avoid even the things I love. I've had to reduce my dreams to match what I'm actually capable of, rather than what I really want. They say you can accomplish anything if you try hard enough, well, for me, the harder I try the more likely it is never to happen. It seems I can accomplish anything if I don't try at all, that works much better for me. 

I did try to get a PDA diagnosis but as usual was told they 'don't diagnose it'. Maybe one day I'll get the label that accurately describes me, but for know I'm happy learning all the weird and brilliant ways my mind works. I'm glad I have the ability to relate to my kids and help them understand themselves. There may be days when I cry that I wish I was normal but in reality, I couldn't imagine being any other way. I'm happy being who I am, PDA and all.

Riko Ryuki

You can read more about PDA on my blog: dragonriko.wordpress.com. You can read more about me and my family on my blog  parentingthepdaway.wordpress.com 

----------------------------------------------------------------------------------------------

For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk, or The PDA Resource

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can see other examples of life with PDA.



















   Week 1  



Cuddle Fairy

One Messy Mama

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "This is Our PDA Story (week 20)"

Friday, 25 November 2016

SEND STARS 3

It's time for week three of my feature called 'SEND STARS', where I introduce you to some amazing bloggers and give you a little insight into their lives.

SEND stands for Special Educational Needs and Disabilities and you'll notice that all the writers in weeks to come have SEND in common. They are STARS because they are parents or carers of, or work with, children with SEND, and they are sharing their personal stories or campaigning for change in the form of a blog.

The blogs lead to a greater understanding of challenges faced by these children but I love the fact that the amazing personality of each individual child is being highlighted along the way too. Those with SEND in their lives tend to be very busy - extra appointments, letters to write, meetings to attend, law to learn and the rest, so it's a wonder any of them find time to write at all. I do hope you'll pop over to their blogs or leave them a comment of support below (or do both!) to thank them for being brave and sharing their stories.

So here we go with week 3... 



*********


Who are you and how old are you? 
Hi I’m the 35 year old, slightly crazy, blogger behind ‘Mummy Times Two.’ I love snuggly blankets, books (I’m an English teacher in my real life), and spending time with my children.

Who else is in your family and what are their ages? 
I live with the Other Half (who’s two years older than me, but don’t tell him I told you that), nine year old Number One and seven month old Number Two. We live in the Yorkshire Dales, in the middle of nowhere, which is just how we all love it.

Which members of your family have SEND (Special Educational Needs and Disabilities) or additional needs, and what are those needs? 
I have dyslexia and dyspraxia, which meant that for a long time I struggled to learn to drive. In fact three driving instructors gave up on me – I can’t really blame them I did keep driving on the wrong side of the road! I got there in the end though and have the philosophy that you can do anything and everything if you try hard enough for long enough. 
Number One has a diagnosis of Asperger’s Syndrome, she struggles a lot with anxiety, and often misses out on doing things she would love to
do because of it. She’s incredibly bright and if you ever get a quiz question about Harry Potter, she is the ‘phone a friend’ you need. 
Number Two also has some difficulties though at this stage we’re not
sure why and what the extent of his difficulties will be. For a long time he struggled to use his left arm, and he still doesn’t use it in the same way as his right one. He also struggles to swallow at times, and chokes a lot. We’re trying to figure out how much of this is related to his silent reflux and whether any of it is because of an underlying problem. He’s the most stubborn baby I’ve ever met though and lets nothing get in his way; he loves to crawl especially if it’s to get a remote control!

Is there an official diagnosis and if so, what is it, at what age was it given and by who?
I was diagnosed with Dyspraxia at 15 and Dyslexia at 18. I’d always covered up my difficulties by working extra hard at home. It was only when my little brother was assessed that my mum started asking questions about me.
Number One was given a private diagnosis when she was two and a half, and an NHS diagnosis just before her third birthday. I’m an English teacher working in a specialist unit for students with Autism, so we were very lucky in that I knew the process which made it less of a battle. 
Number Two was diagnosed with Silent Reflux at four and a half months, as for the rest we’re waiting to see what the future will hold.

If no diagnosis yet, have you seen any professionals with your concerns?
Number Two has seen three consultants, a speech therapist (for feeding issues), two physiotherapists, a soft tissue specialist and had a week at the Bobath Centre. Our time at the Bobath Centre was amazing, he caught up on a lot of the time he had missed and we came home feeling much more confident about how to help him.

Can you list the job roles of everyone you've been involved with on your SEND journey so far?
Oh goodness, that would be quite a list between the three of us! I’m going to say something slightly different though if that’s ok? I come across many professionals in both my work life and my life as a parent, and what has always stunned me, is that as a teacher (even if I have only known a child a couple of months) my opinion is respected, taken onboard and acted on. Whereas as a parent I’m often treated as though I’m slightly crazy and a little neurotic. Professionals need to realise that parents know the child the best, not other professionals. Once they realize this, the system will improve. (Sorry rant over!)

Are your children in school (if so, what type of school) or home educated? 
Number One is in a mainstream primary school and has never qualified for any additional help. It’s caused quite a few problems in the last few years, with her anxiety casing her to lose sight in one of her eyes for several months. She moved schools two years ago though to a tiny village school which has made a massive difference. They care about her, understand her and have made her part of their community. Secondary school I fear will be a different story… apparently she’s looking forward to going as long as there are less than 100 children there!

What would you like others outside the SEND community to know about your child's condition? 
I’d like people to know that my daughter is the kindest, most sensitive, most loving person you could ever hope to meet. That said, she’s perfectly capable of making a very unflattering comment. If she thinks something doesn’t suit you she will tell you. In her head, she’s helping. After all, why would she let you go out looking ridiculous? So please, if someone makes a comment, that doesn’t sound quite right, don’t assume they are trying to be mean, in their own way they could well be trying to help.

Tell us a fact or funny story about you or your life which is totally unrelated to SEND.....
I’m not very good with alcohol, in fact after one glass I’m pretty much done. I went to university in Cambridge, and after one particularly eventful night (one and a half glasses), I cycled home with my friends singing chick chick chick chick chicken. It’s perhaps a good thing I don’t get let out much…


********
You can catch up on this lovely blog over at www.mummytimestwo.com. Please show some social media love by following any of these pages too: mummytimestwo on Facebook, 2ndtimeMama on Twitter and mummy_times_two on Instagram.


------------------------------------------------------------------------

Have you voted in the BAPS yet? 
The deadline for getting your votes in is midnight today (Fri 25th November).
 Please head over to 


and place your votes now, before you forget! 

If you're unsure of who to vote for, there's a great SEND list here which details lots of the bloggers - if your name isn't on it and you'd like it to be, please do get in touch.






Follow me at:

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "SEND STARS 3"

Wednesday, 23 November 2016

BAPS Blog Awards ~ Vote Now!

Have I mentioned that the first ever blogging awards (BAPS - stands for Bloody Awesome Parents) for those writing about special needs will take place next year?

BAPS Blog Awards Steph's Two Girls

It's going to be a super ceremony and a chance for those who 'don't get out much' to let their hair down and party all night. I'm so chuffed to have been asked to be a judge at these awards - this whole community of special people (who don't want to be called special) have meant a lot to me over the last few years and I will be delighted to see many recognised for their hard work. From those who write the big, viral posts, to those who cautiously post about special needs once in a while because they don't want it to take over their lives, everyone is important and appreciated.

Tickets for the event are available for anyone to buy and include entry to the awards, drinks reception, the Awards ceremony, a 3 course meal and after dinner entertainment. Parent, carers and nominee tickets also include entry to a blogging workshop earlier that day.

The categories for nominating are:

The Truth about SEND (sharing the reality of life with SEND)

Newcomer (less than 12 months old)

Campaigning for Change

Promoting Positive Perception

SEND with a side dish of Humour

Practical Support for Families (for an organisation, network or group offering support to families - find out more about BRAs here)


The deadline for getting your votes in is this Friday 25th November at midnight. 

If you're unsure of who to vote for, there's a great SEND list here which details lots of the bloggers - if your name isn't on it and you'd like it to be, please do get in touch.

To all those lovely people who have already voted, please give yourselves a big pat on the back and a huge thank you from us.




p.s. the photo is a tongue-in-cheek effort for a lovely guy who I know will have had loads of votes already...


Follow me at:
Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "BAPS Blog Awards ~ Vote Now!"

Tuesday, 22 November 2016

This Is Our PDA Story (week 19)

Welcome to week 19 of my series called 'This Is Our PDA Story', where you can read about a variety of experiences of living with Pathological Demand Avoidance. PDA is a type of Autism Spectrum Disorder which is characterised by high anxiety levels and a struggle to meet everyday demands. For more information please read 'What is PDA?' or visit the PDA Society webpage. There's more great information at The PDA Resource.


For information, in case anyone still thinks autism is less common in girls, the current estimated split between boys and girls with PDA is 50/50 as opposed to the split for classic autism or Aspergers which is estimated to be 1 girl to every 4 boys.

This week's blogger wished to remain anonymous but has written a letter to other parents in the hope that she can explain more about her daughter. 



------------------------------------------------------------------------------------------------------

Dear parents in the playground. 

It's hard being the new kid at school & the new parent in the playground.


I've always considered myself a warm and welcoming person and naively expect the same in others. Often in new situations it takes confidence to build up a rapport with people you see for only a small window of time each day but after 6 months of standing alone, I guess my efforts have largely gone unnoticed or even unwelcome perhaps.

I apologise for making you feel awkward by standing near you in the hope you may catch my friendly gaze and match it with warmth. Not knowing you, I can't guess you don't want to small talk with a random parent of 'that kid'.

'That kid' who your children talk about at home is my kid. She is bright and beautiful with a generous spirit and feisty, inquisitive nature. She speaks her mind and is a strong leader with interesting ideas. She is creative and sassy with style and flair. She is all these things and more if you could just take the time to adjust your lens.


She is at present still undiagnosed by doctors although a diagnosis of PDA or high functioning autism with demand avoidance is probable. She has no physical disabilities. Physically she is healthy. Perhaps if she had disability aids such as a wheelchair or a walking frame, they might give you a clue to the challenges she faces every day. If she had a life threatening physical illness you may even sympathise or pity her unfortunate situation. 


She has a communication and emotional developmental delay that doctors are unable to pinpoint. This makes her every waking hour either a challenge or a triumph and as a family we walk with her on her journey every step of the way. We support her in every imaginable way and we too struggle to comprehend the inner turmoil she faces daily.


It can make her angry, frustrated and frightened with everyday situations that you and I perhaps take for granted. Interactions for her can be debilitating in certain situations because of this she can appear moody, distant, stubborn or rude. Whilst she knows this behaviour is unacceptable and antisocial, she finds it so difficult to stop once the red mist descends. She is working on it and so are we to support her. 

We moved schools as she was being bullied because of this. You won't know this because she has put up walls and defences to protect her fragile heart. You won't understand that when she is being hostile it's because she put up with far more than she could. She was pretending to be strong for far too long and she is just angry with the worlds unjust nature. I'm sure that if your child is as warm and caring as you are, she will get through this difficult period.


I'm sure you don't intend to leave me out of conversations or activities just as your children are with my child. You're all not silently judging the parent with the angry child who is working out different coping strategies to deal with the uncertainty of her fledgling friendships. Being a kid is trickier than we remember. Being a parent is also trickier than we like to discuss. 


I just wanted to talk. About how the weather is. About the latest school activity. A warm smile. A happy nod.

Anything.

I promise I won't fall apart and cry if you ask me how I am today. I'm great at pretending to be strong. 

Just like my daughter. 



-------------------------------------------------------------------------------------------------------


Please offer any comments of support below as the original writer will still be able to view them. Thanks.


For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk, or The PDA Resource

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can get a flavour of life with PDA.




















   Week 1  



Cuddle Fairy

One Messy Mama



Follow me at:

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "This Is Our PDA Story (week 19)"

Monday, 21 November 2016

Anki OVERDRIVE Racing cars game (Review)

If you're a fan of racing car games, there's a great product out called Anki OVERDRIVE. It's a bit like a cross between Scalextric, Mario Kart and Lego. Sasha is a huge Mario Kart fan and it's fair to say that I'm a bit rubbish at it - she beats me every time! I wondered what she would make of this game and so I went to check it out.





Anki OVERDRIVE has been described as 'the world's most intelligent battle-racing game'. The way the game works is that you control the racing cars via an app on your phone/tablet. The supercars are self-aware robots driven by Artificial Intelligence, and they each have their own arsenal of weapons which you can control with your mobile device (can be iOS or Android). As the game is software driven, the player has access to continuous free software updates, with new physical kit being developed regularly.



There are several different game modes that you can choose from, and it's suitable from 1 to 4 players. If just one child wants to play, they can play against the computer. When fired, the weapons can speed your car up or slow your opponent down. The more you play, the more points you get and the better weapons you can build up. The cars all have their own characters and can be personalised in different ways.



The track itself is magnetic and slots together quickly and easily but also securely, so no breaks to interrupt play. It lies very flat and all of this means that it's very portable if you wanted to take it away anywhere with you for instant fun over the Christmas period.



The starter pack includes 10 pieces of track, a riser/bridge, 2 supercars and a charging station for the cars. The suggested retail is around £149.99 but there's already offers on if you search around. The latest release for the game is the Supertrucks (as pictured above) which are of course mighty, and you can also buy extra bits of track, such as straights, curves, crossroads, launch kits and the like.

Very exciting and easy to pick up; I'm pretty sure it will be on many Christmas lists for both small and big kids...


Disclosure: we were given expenses for attending an event to see the Anki OVERDRIVE in action. All opinions written here are our own.

You can follow me at:
Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "Anki OVERDRIVE Racing cars game (Review)"