2017 positivity

2017 best nine

It’s so easy to get so absorbed in the nitty gritty of the day to day, that you can miss seeing all the little achievements and milestones that you’ve reached.  2017 was not all cupcakes and rainbows of course, but I thought I’d take a look back at some of the big the positives from the past year, and I’m pleasantly surprised at how much I wanted to try and fit into this post!

2017 best nine
My own choices for instagram #2017bestnine

2017 started with a lot of talk about accessible toilets, thanks in the main to the amazing Anne Wafula Strike for speaking out about a horrible experience she had on the train.

changing places selfie with BBC Look East reporter & cameramanThis media attention lead to our family being featured in a little film with our local BBC new channel, which I wrote about here, and throughout the year changing places toilets were in the news on various occasions, thanks to the clever ideas of fellow campaigners! Most recently Hadley’s Hero’s amazing #LooAdvent making The Last Leg and being featured on the Jeremy Vine show on BBC Radio 2!

This year I’ve been trying to learn as much as I can about the origins of the changing places toilet standards, the research they’re based on, meeting various (official & unofficial!) campaigners and the processes for contributing to legislation changes.

This included contributing to a number of different government consultations, something I’ve never done before, but really interesting to have potential to help influence policy & standards!   The main ones this year being an inquiry by the Women & Equalities Committee which enabled me to contribute to the discussion on both accessible housing and changing places toilets (my two favourite themes!) – I even got a little mention in both those sections of the Disability and the Built Environment Inquiry Report, so it was definitely worth doing!

The other main accessibility consultation of the year being on the draft of BS 8300, the British Standard document which deals with accessibility of the built environment.  I’m afraid I was a little underwhelmed by the accessible toilets section and still feel that it reads as though some disabled people are Slightly Invisible when it comes to inclusion.

2017 saw us also actually encountering our first 3 (!) real life changing places toilets!: Grand Arcade multi-storey car park in Cambridge, Mid-Suffolk Leisure Centre in Stowmarket and Kirroughtree Visitor Centre in Galloway Forest Park – We actually travelled over an hour off our route home from Ayrshire to Cambridgeshire to visit Kirroughtree, as we wanted a family friendly car break, with facilities we could ALL use!  Very exciting and liberating for us, but when I try and put it into context with how many toilets (that other people can use) that we may have encountered in all the other places we visited throughout the year (can’t even begin to count!?) it’s a little soul destroying that we are still where we are.

Another exciting dabble in how legislation works, was to find that my MP (Heidi Allen)’s amendment to the Neighbourhood Planning Bill regarding accessible housing had been adopted into the legislation! I had popped along to her surgery at the end of last year to ask about ways we could improve accessible housing provision and she had been really interested and pursued the idea, having previously met with Papworth Trust, and the following week was meeting Habinteg (both influential in accessible housing research and standards) – it was really interesting to see how these things unfold and although things could always be further reaching – I want to give a huge thanks to Heidi Allen for pushing accessible housing up the agenda in housing legislation!

Cambridge Home Show programmeI also want to give a huge thanks to Jennifer of the Cambridge Home and Garden Show for being so supportive of the concept of inclusive design and featuring it within the first show of it’s kind in Cambridge! I’m not sure how good I job I managed to do (speaking is not really in my comfort zone!) but I gave a little talk about the benefits of inclusive design for everyone! I would love to be involved in the show again in the future, and may look towards taking a stand at this or other similar events to give advice to householders on how they could maximise the potential accessibility of their homes to make them welcoming to all of their family and friends!

Badge with DFG Champion graphicAnother housing thing I went along to this year was a DFG Champions Roadshow, run by Foundations HIA, to help link up professionals keen to improve the DFG (Disabled Facilities Grant) process.  It was interesting to see all the work going on behind the scenes and the efforts going on to improve things all the time.  As someone slightly on the edge of the process it was really nice to be welcomed into the Champions, and my ideas and experiences welcome in the debate.  Some of the info from the roadshow I attended, and the others that have been held can be viewed on the Foundations website.

A massive surprise early last year was that I was nominated in the inaugural BAPs Awards, in the Campaigning For Change category! The awards ceremony (hosted by the fabulous Sally Phillips!) was a fantastic night and it was so lovely to meet so many amazing people all out there making the world a more understanding and inclusive place!

At the end of the summer, as a family, we attended Parallel London for the first time! It was awesome! A properly inclusive event and family festival! The motto for taking part in the races was, “start together, finish whenever”! We took part in the sensory 1K designed by the brilliant Joanna Grace (@jo3grace) and J and I walked the last 50m!  It was extra touching that Joanna welcomed J over the finish line (see the bottom left image in best nine pic above)!  Parallel London is definitely on our ‘things to do list’ again in 2018, I couldn’t recommend it enough!

In the summer we finally bit the bullet and decided to invest in a new car.  A Wheelchair Accessible Vehicle (a WAV), but if we were going to buy get a bigger vehicle we decided to go the whole way and make it work for us in as many ways as possible…. so not just a WAV, but a CamperWAV!  We’ve only managed to stay away one weekend in it so far, but have lots of adventures planned for this year, and it’s been invaluable for other reasons too! (Check out the CamperWAV tab above to find out more!)

And finally we had some amazing family experiences over the year, from lovely days out and holidays to milestones reached by my little lovelies! The biggest being J mastering pulling herself up to stand all by herself and the biggest for her little bro was finally braving putting his face in the water at swimming lessons!

So as we step into 2018, I’m looking forward to progress with my campaigning and lobbying for better accessible toilet standards & to reaching a wider audience with the concept of inclusive home design!  We have finally had some concerted time to get our own ‘inclusive home’ plans back on track and hope to be able to get on with the actual construction work to our house in the Spring/Summer!

Here’s to a more inclusive and accessible 2018!

Happy New Year!


SWAN UK is so much more than just a chat forum!

EJ playing with some foil balloons

A post for Undiagnosed Children’s Day 2017

When J was born 6 years ago, our blissful newborn baby bubble was burst in a matter of days, by an echocardiogram, a skull x-ray and some chromosome blood tests before we even left the hospital.  This was the beginning of a very confusing time and a long list of hospital appointments and tests, over many months and years, as each came back ‘in the normal range’, ‘clear’ or ‘negative’.

J’s main ‘symptoms’ (impossible to see in antenatal scans or in a newborn baby) are developmental and sensory disabilites, which gradually became more and more apparent as she grew older, but, especially as J was our first child, it was hard to tell if early symptoms (reflux, low muscle tone, heart murmur etc), were anything to be concerned about. As the tests seemed to say otherwise, we often felt like neurotic first time parents and, living in limbo, without a diagnosis felt very isolating. You can read a little bit more about that time in my post Monkeys & Swans

We felt like the only people in this position, and didn’t really feel like we fitted in regular parenting groups, but without a name for J’s condition, I didn’t know where to look for somewhere we would feel we belonged.  If only I’d thought to google ‘Syndrome’s Without A Name’ or ‘Undiagnosed’ earlier in our journey as SWAN UK (Syndrome’s Without A Name), the only dedicated support network available in the UK for families of children with undiagnosed genetic conditions, was there all along!

We found SWAN UK just over 4 years ago, when J was a little over 2 years old and I can’t really explain how much of relief it was to find we were not alone.  That there were people who ‘got it’. And that there were people we could turn to for advice and support.  It truly was a lifeline of sorts.

I know Facebook has a bit of a bad press sometimes, and it can be a bit, ‘look at me and my perfect life‘, but it does also provide those who, for whatever reason, struggle to connect with others in real life a fantastic and easy to access medium to make those connections further afield.

SWAN was not my first dabble into support goups and internet forums.  Before J and W came along, my husband and I went through an emotional few years of recurrent miscarriage and I found refuge in an amazing bunch of women in a miscarriage support forum on Babycentre website.  Many of us have met up in real life and are still in touch now via Facebook.  I guess it’s a similar scenario in that, although miscarriage is extremely common, people don’t really talk about it and you can feel so alone.

But what I also want to highlight today is that SWAN UK is not just another forum.  Not just a webpage or a just a Facebook page.  It’s all of those things, plus there’s so much more going on behind the scenes that help to support families like ours!

The main aims of SWAN UK are:

Develop and support a community of families of children affected by undiagnosed genetic conditions.

Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.

Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.

So what this looks like to me (and this is just me as a parent member, I know there’s lots more I don’t know!) is:

An amazingly supportive facebook group/forum with families from all across the UK!  The group is really warm and friendly, and as it’s moderated by SWAN, and a host of volunteer parent reps, it’s not a group that suffers from confrontation or competitive parenting (like some other groups I’ve joined in the past and pretty quickly left again!).  There’s usually someone around 24/7, so there’s pretty much always a listening ear.  It’s a great place to come for advice, support and gentle ‘cyber’ hugs when you need them, as well as an place with encyclopaedic knowledge for asking totally practical advice such as types of equipment, filling out forms!  There are also separate smaller regional groups, so people closer together can arrange informal meet ups and chat about specific issues in their areas.  As well as allowing you to break the geographical barriers, another benefit of being online is that you can get involved as much, or as little, as you like, and are perhaps are more comfortable to speak openly with in a ‘virtual’ community than you’d be in real life.  The groups are all ‘secret’ so membership cannot be searched for by anyone not in the group either, so you have anonymity if you want or need it.

EJ playing with some foil balloonsIn addition to the forums, SWAN also organise and fund lots of family get togethers throughout the country! We’ve been to the zoo, a maize maze, to a soft play party and on a train ride over the time we’ve been members!  I’ve loved meeting some of the other localish families in real life, lovely to meet the children, and them to meet each other, and I think as W grows older, meeting the siblings of other undiagnosed children will also become really important for him.

Balloons!  This may sound a bit superficial, but I can’t tell you how lovely it is to receive a lovely gift of balloons, knowing our SWAN family is thinking of us and providing lots of fun! Who doesn’t love a balloon!?  SWAN try to send balloons out to children in hospital, going through a particularly rough time and occasionally randomly just to make a child smile!  As you can see in the picture, the balloons we received went down very well!

SWAN UK do a lot of work with professionals too, to raise awareness within the disciplines that families will come into contact with on their childhood journey, from Midwives and Health Visitors to GPs and NHS decision makers about the added complexities families face without a diagnosis, and pressing for better co-ordinateion of health care and social care.  Some key successes they’ve been integral in, in this area are the appointment of a specialist undiagnosed nurse specialist at Great Ormond Street and a specialist Rare Disease unit at Birmingham Children’s Hospital!

Houses of ParliamentSWAN UK, and their parent organisation Genetic Alliance, are also working with the government on policy around research, resources, services, treatment etc of rare genetic and undiagnosed conditions.  Genetics is such a new and fast moving science there’s so much happening that could make such a difference! I got to see a little bit of this work first hand last year, when SWAN UK parent reps and bloggers were invited to attend the first report of a new APPG (All Party Parliamentary Group)!  So amazing to see Genetic Alliance and SWAN influencing at all levels to help improve services for our families and really interesting to see parliament at work too!

So the reason I’m writing this today is it’s Undiagnosed Children’s Day!  A day to make a group effort to let the world know about the work SWAN UK do! They already support 2000 families of children with undiagnosed conditions but, as 6000 children are born every year with no diagnosis, there are many more they could be supporting!

List from SWAN UK website showing how various amounts of money can be spentSWAN UK are asking us to be detectives today and help find those families (like ours) who could benefit! Help us spread the word!

If you know someone you think might benefit from joining the swan community please do pass this on, and if you have a child with an undiagnosed condition please do join the community! It may sound overly gushy, but SWAN UK really is like a big friendly (and non-judgemental!) family and I don’t know where we’d be without their support! You can sit in the background quietly, or get stuck into chat in the forum, either way SWAN is there to support you and they are out their advocating for all of us!

SWAN UK relies on grant funding and donations and this list shows where some of this money is needed. If you can please help them keep up the great work for families like ours!


Find SWAN at:

Website: www.undiagnosed.org.uk

Email: info@undiagnosed.org.uk

Facebook: @SWANchildrenUK

Twitter: @SWAN_UK

Instagram: SWANchildrenUK


Spectrum Sunday
Keep Calm and Carry On Linking Sunday
Mummy Times Two

Mother’s Day Interview

On the run up to Mother’s Day, the fab Mum on a Mission has organised an interview exchange among a group of  fellow SEND bloggers!

So, I would love to give a warm welcome to Beth of Little Lydia, whose interview is posted below…..

Plum tree blossom

Introduce yourself

Hi I’m Beth, I’m the wife of David. I’m also the mother of 2 crazy girls.

My eldest (I’m not allowed to call little any more) is called Caitlin, she’s 8 and is AWESOME! She is into anything and everything. Last weeks favorites were trampolining, painting and coding games. This week its Lego and crochet (did I mention it’s only Monday).

My youngest is little Lydia, she’s now 16 months but I think this is forever going to be her name. Lydia was born with a condition called Dandy Walker syndrome, apparently its extremely rare.

A couple of Neurosurgeons from Cardiff felt that they could play God with Lydia’s life and she had surgery at 10 days old, as a result she developed meningitis and sepsis. This then led to hydrocephalus which couldn’t be managed for months. She was airlifted to Liverpool after making the front page of our local newspaper to have corrective life saving surgery and in one operation had a huge cardiac arrest which in turn has caused significant cerebral palsy. We have since been told the first operation was probably not the right thing for her.

This last 16 months has been a complete whirlwind of highs and lows, life and nearly death. HOWEVER Lydia is at home as I type this she is grunting at her Dad because he’s watching football and he has ignored her for more than a few minutes – how rude! She’s definitely communicating and is full of life. We LOVE having her home and being together. She’s our miracle, a gift from God and we wouldn’t have her any other way (apart from being free of all the medical issues).

What piece of advice would you give to another Mum in the same circumstances as you?

If I had to give one piece of advice it would be to never give up, don’t let anyone feel that they know your child better than you. If anyone wants to do tests in any shape or form don’t be afraid to ask what they are doing and for what reason. You are your child’s biggest and only advocate. No one will stand up for them like you and if you know something isn’t right don’t ever feel like you are being bossy or an inconvenience.

Doctors and nurses have a duty of care but that doesn’t mean they DO CARE for your child. I’m not being disrespectful but for so long I was made to feel that because Lydia had complex needs and they were experts in their field that they knew what was best for her when in fact they didn’t, I did.

It took me a long time to get my head around all the medical terms, it felt really intimidating and isolating. I read loads especially about Dandy walker syndrome, I still read loads but I also know Lydia really well now. I know her patterns and behaviors and when we go into hospital its me giving instruction about what I think is wrong.

If you aren’t being listened to ask for a second opinion. It is illegal to refuse a second or a thousandth opinion.

What’s the best piece of advice another Mum has given you?

The best piece of advice another mum has given to me, has to be from a good friend of mine. She is an amazing mother. Her kids are some of the kindest and best behaved children I’ve met and she has 5 of them! She said never be afraid of saying no, either to your children or other parents or even grandparents. Providing its done out of love and for the best reasons. If you think something isn’t right for your child say no and stick to it. Also don’t be afraid of what others think if you do say no, they are your children.

I saw her saying no to one of her children once. I cant even remember what it was over but she said it very calmly but directly. He shrugged and walked off. NO FUSS… NO TANTRUM!!! I was like…. How did you get him to do that…? Gob-smacked! She replied so calmly and graciously – he knows when I say no, I stick to it. Fair enough it works, it took some doing and sticking by. Accompanied by a ton of guilt and crocodile tears. It’s not always a tantrum free zone because, lets face it kids are kids. But Caitlin now accepts (generally tantrum free) if we say no its no, regardless of who is present. #winning!

What one thing did your mum always used to say to you which you have found yourself repeating since becoming a Mum?

My mum always used to say and still does, just take one day at a time. I say this A LOT now.

Who would play you in a movie of your life?

I would love to say Rachel McAdams, I love her.

What are your plans for Mother’s Day this year?

My plans and prayers for mothers day this year are to be hospital free and the whole family to be in good health. Anything outside of that is a huge blessing to us.

If you could go back to the beginning, what would you tell yourself as a new Mum or as a Mum of a newly diagnosed child?

If I could go back to the beginning of my journey as a mum, I would tell myself to stop worrying so much on what others think about anything. That their opinion doesn’t count for anything.

I would tell myself to give me a break, it’s ok to have a nap and not be dressed and made up all day every day, its ok for the kids not to have a room FULL of toys and stuff because all they want is time. Precious time.

I would tell myself that a fancy house, a fancy job and fancy clothes don’t count for anything when your child’s health is at risk. Enjoy the little things.

What is the biggest battle you’ve faced as a Mum?

The biggest battle I’ve faced as a mother is getting others to listen and respect my daughter Lydia.

She is a person not a neurological condition. Not a mistake. Not a regret. She’s a person in her own right, with her own mind and her own personality which we are to respect and accept.

zzI have had to see her on life support more times than one should. I’ve also seen her have a cardiac arrest, which no mother should ever have to witness. She has been through way more than the average child or human has ever been through and she deserves the right to be acknowledged, appreciated and loved as Lydia. Perfect the way she is.

If you were PM for the day what would you change to make life easier for Mums of disabled children?

If I was PM for the day, I would scrap the age limit on DLA mobility. You either need a car for mobility purposes or you don’t. There shouldn’t be an age limit.

We currently don’t own a car, we have to borrow my parents to get back and forth to appointments, which is at least three times a week. I have to push Lydia to the car, take her out of her wheelchair still attached to oxygen wires on the wheelchair and a feeding pump, again wires attached to her face that lead into a bag that feeds her. Then position her properly – she cant support her head properly by herself yet. Then take the suction machine from the wheelchair and place it into the car followed by her feeding backpack and oxygen backpack. Clip her in her seat, before taking the wheelchair to the back of the car and having a full on fight to take it into 3 parts which is not only complicated but extremely heavy, especially in the pouring rain! After all that I then have the delight of a free but frequent game of tetris to fit it in the boot in a certain order or the boot wont close. All because Lydia is small enough to carry without needing mobility!

I would also like to see changing places pretty much every where!

I would make it legal for specialist doctors and consultants to perform surgeries on children privately in the UK without all the red tape. Some children need expertise from world specialized consultants but are too poorly or vulnerable to travel to the needed care. Therefore provided said consultant has all the right certification and the parents were willing to pay privately then that consultant should be able to perform or treat the child as needed within the UK.

What’s the best thing about being a Mum?

The best thing about being a mum is witnessing all the firsts.

The first bath, the first time leaving hospital, the first smile.

Caitlin’s 8 now and it still doesn’t get old. She managed to skate the length of our garden all by herself a few weeks ago. It was amazing, she was so chuffed with herself and I was so happy that we stuck it out with her.

It really is a great day whenever one of the girls get a first. It makes all the hard work worth it by a million times.

Funniest moment as a mum?

My funniest moment as a mum… that is impossible to say I live with a comedian of a husband and the kids follow suit. They are very much Daddy’s girls. Caitlin has great one liners, which are hilarious. Even listening to her laughing makes me howl with laughter. Lydia pulls the funniest of faces and pretends to sleep if she doesn’t want to partake in conversation with you.  A particularly funny time was at Christmas when I let Caitlin decorate the tree and found Lydia covered in silver tinsel and a big bow on her head happy as Larry!

Who are your favourite Mum bloggers?

I don’t have a particular favorite mummy blogger. I read a range of blogs depending on my mood and where the kids are at.

I do have a keen interest in reading blogs about accessible places and what works for both of my girls.

Also if I’m struggling with a particular thing I might go to pinterest and see what other mums have to say about it. I find that others mums and their experiences (especially medical ones) have a much deeper understanding and better handle on giving great advise compared to a person in a paid role with no real hands on experience.

What is your life motto?

“The Lord is in control. This is exactly where he wants me to be right now”

Finally, if you won the lottery today, what’s the first think you would buy?

I would buy a car and adaptations for my home.

After that I would spend the rest of the money on research into a cure for Hydrocephalus. It’s a very complex condition with no research in the UK. 400,000 neurosurgeries a year are for shunts to manage hydrocephalus. Shunts only have a 50% success rate and many people have to keep having repeat neurosurgery because there is currently no cure.

I would like to change that, not just for Lydia but for all people.

You can find Beth’s blog, and follow her on social media, here: 

Blog URL: www.littlelydiablog.wordpress.com
Facebook: littlelydia.co.uk
Instagram: Bethsworld101
Pinterest: bethsworld101

Accessibility Stories 02.17

A rusty key with title "Accessibility Stories 2017 Linky"

Thank you so much to all those who linked up last month!

Round Up from last Month

At this time of year many of us are thinking about booking our summer holidays, however for families with physical and sensory access needs, staying away from  home can be stressful! It was lovely to read this positive holiday experience by Rainbows Are Too Beautiful.  Particularly interesting for us as both my kids love being outside, especially EJ who thrives on the immersive sensory experience nature provides (the light and shade, the feel of wind and rain, the differences in sounds, smells and even tastes) so a forest holiday would be ideal for us, and a holiday home with a safe outside space would be perfect!

A rusty key with title "Accessibility Stories 2017 Linky"A few of the posts last month were about how just getting out of the house can be a mission, never mind going on holiday!  In this aptly named post, Project Get Out of the House, Orange This Way determines to start a new #wheelygood resource for Devon and Cornwall to help visitors and locals alike to find wheel friendly places & activities!  In Where Were the Good People, Ordinary Hopes asks why people stand by and allow others to struggle, and even become victims of bullying behaviour, sometimes in circumstances where a little thoughtfulness or a kind gesture could easily make all the difference.  While on the other hand, Raising a Superhero tells of a lovely Christmas outing where inclusion was at the heart of the experience and is definitely an Afternoon Tea with Father Christmas I’ll be looking up next festive season!

Accessible toilets is a favourite theme, well, when I say favourite theme I agree with Ordinary hopes in her post Petitioning for What?, in that we shouldn’t even need it to be a theme for discussion (…please do sign the petition though!)!  However on reading this update by Mum on a Mission about her an ongoing correspondence with Cineworld it’s pretty clear that we do need to continue to lobby for greater clarity of standards, as the big service providers still seem to believe the guidance doesn’t apply to them!

On the positive side for loos, it was great to read this fantastic guest post by Brody, Me and GDD about changing places toilets on Mumsnet, with loads of fantastic comments, many from people who hadn’t heard of the campaign before – it’s always brilliant to reach and gain support from people not directly affected by the issues!

Linky Info

This linky will be open for 2 weeks, please do share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces and products below…. And do check in again next month to read the round up! Guidelines:

  1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box under the badge image below and add it into your blog post while in ‘text’ mode of your blog editor) or add a text link back to my site so that people can find the linky and read the other blog entries;
  2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences!
  3. It would also be amazing if you could share your post (using the hashtag #AccessibilityStories and/or the shorter #AccessStories) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
  4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.

Accessibility Stories 01.17

A rusty key with title "Accessibility Stories 2017 Linky"

Happy New Year!

A rusty key with title "Accessibility Stories 2017 Linky"

Welcome to the first #AccessibilityStories of 2017!

Apologies for the lack of linky last month, too much going on at Christmas I’m afraid!

My lovely campaigner friend at Ordinary Hopes linked up a couple of posts to my last linky, in November, which are particularly topical as this year has begun with quite a flurry of media interest in accessible toilets!

The first is a Christmas post, The C Word, highlighting how the lack of suitable toilet facilities, meant that her family couldn’t participate in many of the festive activities that many others take for granted.

The second, Struggling to Care, a poignant post setting out what really makes caring for a loved one difficult.

This linky will be open for 2 weeks, please do share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces and products below….

And do check in again next month to read the round up!


  1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box below and add it into your blog post while in ‘text’ mode of your blog editor) or a text link back to my site so people can find the linky and read the other blog entries;
  2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences!
  3. It would also be amazing if you could share your post (using the hashtag #AccessibilityStories) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
  4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.

Let’s stop obsessing about shoes!

EJ's purple school shoes

EJ is delighted to get back to school after the summer holidays! She has no formal communication (or at least not that we understand……yet!?) but it was clear from the excited bouncing in her chair and her lovely big grin that she knew exactly where she was and was raring to get back to a routine, fun activities and way more stimulation than I’ve managed to provide here at home! She loves school!

EJ outside school with a big smileEJ is now in Year 1 at a special school.  Eighteen months ago we agonised over the decision on which school would be best for her.  Where possible I’d always choose inclusion.  However on visiting several schools, including our lovely mainstream village schools and several special schools we could see straight away that her school would be the perfect fit!

EJ’s school has a uniform.  I like the idea of school uniform.  It gives a sense of identity and belonging to the children, and makes organising an outfit in the morning so much easier for me!  EJ’s uniform is a nice balance of comfort and practicality and (I think) as smart as a school kid ever really needs to be.  Soft polo shirts, sweatshirt or cardigan and trousers (which in EJ’s case are generally jersey fabric or leggings).  They have an official branded clothing, or you can wear regular shop bought items in the school colours.  I guess at a special school they have to be pretty relaxed.  The children have such a variety of disabilities, sensory needs and medical conditions that clothing has to be comfortable and adaptable for school activities and to allow for independent and assisted personal care.

The same goes for shoes, black is the generally preferred colour, but as long as the shoes are practical for school activities we’ve found the school are happy, which for EJ is just as well as we struggle to find the right shoes for her in any colour!

Last year, when EJ was starting reception, I scoured the shoe shops and trawled the internet looking for suitable black shoes.  EJ used to wear AFOs (Ankle Foot Orthosis), splints, which made finding shoes pretty tricky.  The best we found were double velcro fastening sandshoes which allowed you to open the shoe right up to get the base of the splint into the shoe.  She now has orthotic insoles which raise her heel slightly within the shoe, so for this reason, and to give her some ankle support, she needs to wear ankle boots, preferably with two velcro straps to get the insole into the shoe correctly and obtain a good fit around her ankle.  EJ also has very small, and very the narrow feet (off the Clarks chart narrow!).

EJ's purple school shoesThe best we could do last year was dark pearlised purple boots and she has started this term in navy and pink sandals! (Incase anyone reading has the same sort of shoe fit issues as EJ, the brands we have found that work best for EJ are Ricosta and Richter – neither of which are cheap!)

This is probably a whole other post (rant), but the “girls” school shoes selection is flooded with pumps, mary jane and the occasional brogue style shoe.  Next to nothing with any ankle support.  Surely it’s not just children with “official” orthopaedic issues that would benefit from ankle supportive shoes?  I’ve seen a few options in the “boys” selections (although still not many in the school styles), and although I’m not swayed by the girl/boy marketing, the problem is boys styles are always wider fit, and just don’t fit EJ.  I’m very excited to have come across one black ankle boot this year online from mainstream brand Startrite, so I’ve ordered them today and I hope they will be narrow enough (they do have some patent leather detailing and some decoration though, so I’m not sure if they would pass a strict school uniform test…!).

So what if circumstances had been a little different, if  EJ’s academic learning was more consistent with a mainstream approach and we had chosen to send her to a mainstream school?

It made me really sad to read various stories in the news (like this one in the Guardian) about various state schools sending kids home for not wearing exactly the right clothes or shoes.  As I say, I like the idea of a uniform, but I don’t understand why it would need to be so strict that kids can’t wear something comfortable?

Lots of the comments on these articles made me equally as sad, things like:

  • “Kids need to learn about sticking to rules”!

But our kids aren’t in the army! They are learning all sorts of things at school, rules of all different kinds, their lives timetabled from the age of 5, why does a specific sort of trouser fabric or shoe style need to be a part of that?  Some kids like to challenge rules too.  Conformity isn’t the only right way, seeing things differently, being creative can be a valuable asset in life and work! Why get bogged down in a stand off about shoes when you could be supporting the next generation of great innovators!?

  • “Kids need to learn about the real world. I don’t have a choice about my work uniform”

Well, (1) that’s just one small aspect of the real world and work uniforms aren’t worn in all jobs and (2) most people do have some sort of choice in that, it’s part of the deal of that job contract. Kids at school don’t have a choice, they have to go to school and, until 6th form, that school was was most likely chosen for them by their parents or the Local Authority!

For several reasons I think an overly strict school uniform can be exclusive, rather than inclusive and levelling (the very reasons generally cited for having a uniform in the first place):

1. Sensory issues

Many kids have tactile sensory issues, sensory processing issues, ASD…. and have aversions to particular clothing (labels, stiff collars, scratch fabric, waistbands, restrictive shoes….). Children constantly distracted by their clothes are not going to be able to focus properly.  Isn’t it more important to make sure our kids are ready and receptive to learn to the best of their abilities than obsess over the specifics of what they are wearing?

2. Physical

The traditional school uniform is just not practical for many children with physical impairments.  Long skirts, stiff waistbands, stiff collar and tie, blazer.  In EJ’s case, she spends much of her day in her wheelchair or using mobility aids.  She needs help with personal care and help to transfer from her chair, either with adult support to stand or using a hoist.  She wears stretch fabric trousers, elastic waistbands and loose polo shirts so that she’s comfortable. Flexible clothing also makes dressing and undressing easier, currently for the adults assisting her, but in the future easier for her to do independently.

3. Highlighting difference

Some comments on these school uniform articles highlighting the issues for children with special needs and disabilities, were countered with replies like “oh, well that’s different, I’m sure the school would make exception” –  I think this is the attitude that makes me most uncomfortable! Disabled children, and children with other differences from their contemporaries, are already singled out, maybe visibly so or by a hidden condition (a learning disability, sensory issue, gender dysmorphia….).  All kids have enough going on trying to feel part of their school community without a big flashing arrow pointing them out as an exception.  Do they really need to be made to stand out more because they can’t wear clothing or shoes that don’t match the strict regularity of their contemporaries?  Perhaps even making the other kids resent them.  Will some kids just go along with the ‘rules’ in order to try and fit in, and as a result be uncomfortable and distracted throughout their school day? How will that help their learning?  And what of those who don’t have an “official’ diagnosis? Those who’re just fidgety and uncomfortable being restricted in shirt and tie, why shouldn’t they get to wear something more comfortable?

If we really want the uniform to act as an visible leveller then shouldn’t all kids be given the same flexibility?

I guess this is a request to all schools to think about how their policies affect ALL kids (and also to retailers to provide uniforms for all needs too – especially supportive shoes for girls!) and to think about making their school uniform policy inclusive, as a small step in helping make the school community and therefore future society more inclusive.

Spectrum Sunday



slipping through the cracks

A post for Undiagnosed Children’s Day, 29th April 2016….

The very nature of an undiagnosed condition (a Syndrome Without A Name) is that it is not the same as any other that’s been identified.

Of course, every single one of us is different (whether deemed to have any physical or mental health condition, disability or not). And people who are diagnosed with a syndrome can be affected by it in very different ways (in the case of rare disease there may be very little known about the condition at all!), so diagnosis rarely gives a full picture.

And perhaps there are disadvantages to being ‘labelled’? Largely around preconceptions and conclusions that are leapt to about how YOU may be affected – when in reality there’s likely to be a huge variation from person to person.

However there are advantages in diagnosis too, which I’d say outweigh the disadvantages no matter how rare the condition, not least because it can help to stop you slipping through the cracks.

EJ as a new babyMy antenatal tests gave no indications that EJ would be anything other than ‘a normal healthy baby girl’ – a commonly used phrase, and one that pregnant women are so eager to hear.

In the past perhaps I hadn’t really considered the implications of the phrase, how it separates ‘normal’ from, from what? abnormal? different? unique?!

As a phrase it now it tends to make me wince, because….

What is ‘normal’?

Indeed, what is ‘healthy’!?

When EJ was born, a few ‘issues’ rang some bells with the neonatal paediatrician and he ordered chromosomal blood tests while we were on the maternity ward.  These came back ‘within the normal range’ so we were sent home reassured there was nothing ‘wrong’ with our new little baby bundle.

I can totally see how at this stage, with no evidence to suggest EJ wasn’t going to follow the typical child development path, it wouldn’t necessarily have been appropriate (or indeed helpful!) to launch into the full complexity of genetics and confuse a couple of tired and anxious new parents.  However there was obviously in inkling there…..

…..and very gradually EJ began to collect more symptoms, including missing most of the typical development milestones, and her differences became more & more noticeable the older she got, and she began to stand out from the baby crowd.

The added complexity for us was that we moved NHS trust when EJ was 6 months old, so we had to start afresh with a new set of health professionals. Our GP notes of course would follow, but not instantly, and apparently notes and test results from hospitals don’t, they have to be requested specifically!

Thankfully we found our new GP surgery to be fantastically supportive and EJ was referred to our new hospital without fuss.

We then embarked on a very confusing journey of test after test, normal results, clear scans and more normal results.  Being passed from one department to another, in and out of hospital clinics and community services.

EJ sitting unaided at 18 months
EJ sitting unaided at 18 months

EJs symptoms (even her heart defect) could be related to ‘normal’ paediatric issues, so rather than being joined up, as they would more likely have been had she been diagnosed, were left feeling confused, even neurotic and paranoid about reading too much into things.  We didn’t really know what questions to ask or even who to ask…..

We were also left feeling guilty and worried that perhaps we had done something wrong? Being asked by every new clinic the same questions about her history, even going over and over how my pregnancy had gone – did I drink or smoke or take drugs in pregnancy? – is all pretty guilt inducing! We’ve even been asked several times if me and her dad are related! – I know these questions have to be asked, but perhaps once is enough….? Perhaps a clear crib sheet at the front of medical notes!?

And all the while (we had a lot to take in, so unless things were spelled out it may have washed over us!) I don’t remember anybody saying (given her symptoms) that it was pretty likely that EJ did have some form genetic disorder no matter what the results of the tests.  In fact I’m not even sure how many of the non medical professionals involved were aware that living with an undiagnosed condition is such a common state of being, sometimes not just a stage while you wait for meaningful test results (6000 children a year are born with an undiagnosed condition!)….I’d even hazard a guess that some may have suspected it was all in our minds…. as they (like us!), would have expected something to have come up in some of the tests EJ’d had.

The health, social care and early years education system can be complicated and confusing enough for anyone, but I think where having a child with an undiagnosed condition differs from those with known syndromes, even rare ones, is that without a ‘name’ you feel like you are constantly trying to convince people that there really is ‘a thing’.  Whether that’s a thing (as for EJ) affecting her sensory processing and in turn her development, or a thing linking a group of medical problems together. Many, like us, feel isolated, perhaps not feeling like you qualify to join ‘additional’ needs groups (but can’t relate properly with mainstream), don’t qualify for help, and that perhaps you are a fraud for taking up valuable NHS time?!

Many undiagnosed children have extremely complex medical needs, many from birth or even before they were born, so unlike EJ will have been ‘in the system’ from the beginning – but, from what I understand, this doesn’t necessarily mean care is better co-ordinated.  For many, one medical symptom will dominate, and that medical specialty might take the lead in fire-fighting that need, but they are not necessarily the right team to be investigating the cause and leading on the overall care of the child.

I really don’t mean any of this to sound critical of any of the individual people, teams or clinics involved, or indeed the NHS or social care. Far from it! Overall we have had wonderful care!  We really do understand the massive strain and funding constraints on the NHS and social care, and the limitations of working within a framework of approved techniques, medications and therapies.  However that’s not to say there couldn’t be big improvements in coordination of the care, particularly for patients with undiagnosed conditions.  More coordination could also bring more efficiency (and less frustration!) for all involved, freeing up those in the caring and medical roles to ditch some of the admin and get on with what they want to do, providing support, treatment, therapy etc

With many known syndromes there are often typical symptoms and treatments, and you’d be put in touch with key teams, relevant tests carried out and early intervention therapies begun from the start with a coordinating specialist overseeing the care.

With a rare condition a plan is less likely to be in place, but at least there is a focus, something tangible even if still confusing.  There is likely to be medical research going on, some interested specialists (which can never be the case for undiagnosed patients as they are all so different, we are all hanging around hoping to grasp at the coat tails of some identified condition).

Being diagnosed also gives you the opportunity to meet and engage with other families in a similar position, however few of them there are.  It’s such a human need to be able to share experiences with others who understand – which is why SWAN UK is so important to us undiagnosed families, because although we are all so very different, we do share challenges and the confusion of the unknown.

EJ now 5, practicing standing with dad
EJ now 5, practicing standing with Dad

EJ’s long list of symptoms don’t really help give a full picture of her condition since they can be attributed to many other known syndromes and ‘normal childhood issues’ which means that we don’t know what the future might hold.  In many ways I find this liberating, as there are no preconceptions about what her life and achievements will be.  However it also raises difficult questions – Will she walk (what adaptations will we need to make in our home)? Will she talk (will we ever be able to communicate)? Will she be able to live independently (how much support or not will she need – what happens when me and her dad are gone!?)? Will she develop any associated health problems? Will she have a shorter life expectancy (actually I don’t think I want to know the answer to this last question!)!!!?

Genetics is just so bloomin’ complicated!  We’re just at the tip of the iceberg in this area of medical research and, in the meantime, a long way to go to make sure it is acknowledged across the board that even if the tests don’t find an answer, it doesn’t mean there’s not a genetic glitch hiding somewhere, and that the family affected still needs the same level of help, support, treatment and therapies as those who are diagnosed with known conditions.

Last Undiagnosed Children’s Day a very exciting announcement was made for a new Roald Dahl SWAN nurse post at Great Ormond Street Hospital (there’s a great clip on this link of an interview with the super campaigner behind Just Bring The Chocolate about the new position).  And also since then two new specialist nurse positions at Birmingham children’s hospital for a rare disease specialist nurse and a genetics specialist nurse!  We in the SWAN community are holding our breath hoping these new roles will show the NHS just how much of a difference these coordinating speciast roles can make  – and hoping they can be replicated at all the children’s hospitals and major teaching hospitals….. no pressure new recruits!

In parallel it’s so important that awareness is spread generally, and among frontline professionals that will come into contact with new parents (midwifes, health visitors, SENCos etc), that being undiagnosed is actually a ‘thing’ and that there is help and support out there in the form of SWAN UK!

This blog post forms part of an amazing series by SWAN parent bloggers for Undiagnosed Children’s Day 2016.  Check them out via the blog hop link below!

And if you can, please support the work of SWAN UK via their website 

inclusive products focus group

I’m just beginning to catch up with myself again after the festive period and finally finish of some posts I’ve been meaning to do for ages!

One of the first things I did when I decided to get back onto the design horse, and begin writing this blog, was to fill out a Scope questionnaire I found online, which turned out to be an information gathering exercise for a potentially very exciting collaboration with Ikea! At the end of the questionnaire was a little box to fill in if you were interested in coming along to a focus group – yes please!

IMG_2314So, before the chaotic pre-Christmas period (and with the babysitting help of Twinkle’s lovely grandparents), I dug out my oyster card  and took the train down to that London with all the commuters (including my husband who does it everyday so wasn’t quite as excited as me!)! Funny stepping back into the London rat race for the day, and just as glamorous as I remember as I disappeared underground, missed all the sights and Christmas displays and headed off up to Ikea Wembly.

The focus group was a small group of fellow parents with a range of experiences of children of different ages and a wide range of abilities/disabilities, organized by lovely group from Scope.

The collaboration has come about as Ikea are investigating the development of their product range, including products they would like to appeal to the special needs market as well as mainstream. I love this inclusive approach. So many things that are ‘special needs’ are actually just good products that would also suit younger children, older people, families etc, either as they are or with a bit of a tweak or perhaps with the addition of an accessory.

The focus group discussed the outcomes from the survey, which broadly fell into 3 categories: eating, playing, sleeping and the varying issues we all have around those themes, products that have helped usand products we felt are missing from the general market place. We all had a stroll around the store and picked out things we liked, or thought could be improved or adapted.

Ikea already have a pretty progressive approach to design and certainly our little family have numerous Ikea products which although are ‘mainstream’ fullfill our ‘special needs’.



Our 3 favourite Ikea products are:

Play Kitchen: This is fab as not only is it a stylish little piece of furniture at a very reasonable price, it also performs as a very handy prop for standing practice, with 3 different height adjustments to allow good standing positioning.

Spinning Egg chair: A big favourite in the sensory processing world for enabling vestibular stimulation, said to help with processing in various ways. This was Twinkle’s Christmas present from Santa!

High Chair: The Antilop is an amazingly simple, extremely affordable, easy to clean high chair which can be accessorized with a little inflatable cushion insert to give extra postural support to a younger baby, or an older baby with low tone! This was invaluable for us before we got a specialist postural support chair for Twinkle.


I know Ikea is a marmite place….I fall into the love it category! Functional, affordable and stylish furniture and accessories – what’s not to love? (Although I’m told the ‘ikea experience’ is not for everyone!) I really hope they carry this project forward as I think this inclusive approach is fantastic and will really allow families with special needs to access products more easily, affordably and that look good in the home, just like any other family.

PS. It may sound like it, but this is not a sponsored post!