Access Linky: April 2018

a rusty key with #accesslinky written below

Happy Easter all!

Welcome to my blog link-up for sharing posts with ideas and experiences (good and bad!) of physical or sensory accessibility of buildings, places, spaces, products and/or activities!

Access Linky social media graphic

I don’t know where this year is going!? A whole school term gone and it’s April Already!

Linky Round Up:

In the round up from last time, Cerys writes about her fun day out Visiting Birmingham Art Gallery on Life and Other Stories Blog! Love the idea of the rainbow show!

Rainbow’s Are Too Beautiful shared a couple of her posts.  The first was a great summary of options for Moving up in Education for autistic young adults.  The next, particularly apt with it being World Autism Awareness Day tomorrow, she explains why she considers even just A few Autism Friendly Events very welcome!

Ordinary Hopes says Be Like Bob and support the Changing Places Toilet campaign! The campaign that many of us wonder why it has to exist at all? Shouldn’t equality legislation mean that everyone should have reasonable access to a suitable toilet in buildings that have toilets?

The Long Chain explains how It Ain’t Easy Being Green and that, despite all the best intentions in the world, there are many reasons some people can’t just ‘go plastic free’ as easily as others.

Inclusive Home

The linky will be open for 3 weeks!

  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 above 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 (use the hashtag #AccessLinky in your comment)!
  3. It would also be amazing if you could share your post (using the hashtag #AccessLinky) 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.

….and don’t forget to check in again next month (1st of the month) to read the round up, and link up again!

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!


10 things you may not know about inclusive homes

Accessible and inclusive design is my ‘thing’ and, as a housing architect, home design is also my ‘thing’ so this is a post about some things you might not know about accessible and inclusive home design!

So what is inclusive design?

The general principles of inclusive home design have been coming into legislation in some regions of England via the Lifetime Homes standards and more recently a version of the standards has been included in the building regulations (although the regs don’t say when and where they should be adhered to, so they are optional for developers unless individual planning authorities to set critera!).

What are Lifetime Homes?

“Lifetime Homes are ordinary homes designed to incorporate 16 Design Criteria that can be universally applied to new homes at minimal cost. Each design feature adds to the comfort and convenience of the home and supports the changing needs of individuals and families at different stages of life.

Lifetime Homes are all about flexibility and adaptability; they are not ‘special’, but are thoughtfully designed to create and encourage better living environments for everyone. From raising small children to coping with illness or dealing with reduced mobility in later life, Lifetime Homes make the ups and downs of daily living easier to manage.”

I believe we should all have these criteria in our minds when we are searching for a new home, or making alterations to our homes.  After all, we invest our hearts in our homes, so why wouldn’t we want to make sure they are as welcoming to all our friends and family as possible? And, as we invest our money (the biggest investment most of us will ever make!), let’s make sure we’re providing ourselves with a physical insurance policy, a house that can adapt smoothly to our future needs!

We just need the knowledge, the inspiration and the opportunities, to be able to make these choices for life long happy homes!

So to my top 10….

1. There are not enough!

Accessible homes are just not readily available.

Those who need an accessible home usually struggle to find anything suitable and many people need to adapt whatever they can find (this is practically impossible on the private rental market!).  It’s very rare to find a fully accessible property.  Even bungalows often have steps at the entrance and narrow doorways and corridors!

And even if you are to you build your own grand design, there are so very few great examples out there to inspire, that those who need accessibility features often end up feeling that it’s too clinical and people who don’t currently have access issues are just not encouraged to think inclusive, so unfortunately it’s just not at the top of the agenda.

I’d like us to change that! Let’s stop treating accessible and inclusive design as niche! I’d love to see great hints and examples of inclusive design in the magazines and the home design TV shows!

2. You don’t have to be old or disabled

….to benefit from an accessible home!

Many of us share access needs but many of us just ‘put up’ with the way things are, the way things have always been done.

Small children are only small for a limited period of time, so we don’t change our homes specifically for that period in our lives – but how much easier would it be if homes were pre-designed to be ‘wheel friendly’!?  For getting in and out with buggies, little ones crawling or bum shuffling, first steps with a baby walker, and later on perhaps bringing scooters and/or bikes through the house to the back garden?

But your house isn’t only for you to live in.  Most people want to be able to socialise, to invite friends, have people to stay.  What if you make friends with a disabled person? Could they come and visit? What if one of your close friends or relatives becomes disabled or starts to find getting around more tricky with age? Could they still come and visit, could they use the loo or stay overnight?  Without compromise or making them feel they are being too much trouble? If we have the choice, wouldn’t we want to be able to welcome all our friends and relatives (now and in the future) whatever their abilities? Why not designs homes to do just that!?

3. Ugly plastic grab rails

…are not a requirement!

Grab rails may be a necessity for some people, but they don’t have to be ugly! There are some lovely metal (and even timber!) versions around now.  Some that combine function with regular home accessories, like towel rails or shelving racks to integrate into the room design (edited to add: check out these ideas from Wheel Chic Home!).  You could even consider the design of furniture and fittings such that they’d provide a suitable stabilising surface.  A piece of cabinetry in the bathroom that would allow someone to steady themselves as they stand at the sink, or gets on and off the loo?

3. Good design principles

Like energy efficiency, access and inclusion should form the basis for good design, not an add on.  If something is integrated from the beginning it’s always going to be more economic to do, and it also means it will feel like a natural part of the whole, almost unnoticeable except to those who need it!

4. Open plan living

If the magazines and TV makeover shows are to be believed, we’re all aspiring to open plan living and wide spaces, and nothing makes wheelchair or walking frame turning circles easier than open space, and getting rid of walls and narrow corridors!

Inclusive homes most definitely can be Ideal Homes!

5. Downstairs shower room

Developer housing is full of teeny little downstairs loos and micro sized en-suite bathrooms – quantity over quality (in my opinion)! How about consolidating all the micro spaces and opting for a sensible sized downstairs shower room and sensible sized family bathroom independent of the bedrooms so they can be used by whoever needs it (and therefore accessible to disabled family members or guests!)? ……I reckon this would also be super handy for hosing down muddy children, dogs and gardeners!

6. Parking

…is important for many disabled people as public transport is not always doable.  Many disabled people need access to a car or easy access for taxi pick up and drop off.  If this is something you can integrate at your property, try to ensure there’s enough space around the car space for wheelchair access or to be able to fully open the car door to helps someone in or out – again this is beneficial for other uses (wrestling children into car seats, buggies, shopping, luggage etc!) if you don’t use a wheelchair yourself!

7. Thresholds and doorways

…can be a deal breaker when it comes to making your home visitable for disabled friends and family.  There is a sensible historic reason for front door steps.  Homes built with timber floors, are raised a certain height above the outdoor ground level, to prevent dampness and also water getting in in flash floods.  So, chances are, most older homes will have a door step (or several) and it can be a tricky problem to solve (depending on how much space you have for ramps).

If you can solve your door threshold when you are doing improvement work (or if you are building a new home!) then do it! Save yourself a potential headache in the future, and make it easier for any disabled visitors you have in the meantime!

9. It doesn’t have to be a bungalow!

Accessible homes can be detached houses, semis, terraces, flats on the ground floor or even flats on the upper level, as long as there’s step free access (i.e. ramps, level thresholds and/or a lift) and a room that can be accessed step free that could be used as a bedroom! In a house, perhaps you could double up uses – a play room, a home office (or even a living room if separate from the kitchen/dining area) that could become a guest room for a disabled visitor?

10. Future-proofing

As I mentioned above, our homes are probably the biggest single investment that we’ll ever make, so I think it’s only sensible that we think about future proofing them!  By that I mean make them sustainable in the broadest sense, invest our money sustainably so we don’t have to throw large amounts of money into them later! Think about energy efficiency, perhaps energy production, the materials that we use, but also how inclusive it is going to be!

If we design along the lines of lifetime homes principles we can make our homes become a physical insurance policy against illness or disabily in our own futures, as well as comfortable and flexible in the present!

This is a post for #SEND30DaysChallenge: Day 2: “10 things you don’t know about….”

(At this rate it’s going to take me years to complete this challenge!)

Spectrum Sunday
Keep Calm and Carry On Linking Sunday

Accessibility Stories 07.17

a rusty key with #accesslinky written below

Thank you so much to all the linker uppers last month!

Apologies for running a bit late this month. The end of term and start of the school summer holidays have made their impact on my time to blog! I suspect many of you will be in a similar boat!?

Round Up:

Talking of holidays, last month Rainbows Are Too Beautiful shared an absolutely lovely little movie by @bobscartoons in her regular Wonderful Wednesday feature.  Family holidays can be daunting at the best of times, but when you have access and sensory considerations to make too, it can become a mission and a half!

Picture of a rusty key saying: Share your accessibility stories #AccessLinky

There were also a number of posts on inclusion last time.  Both good and bad examples!

Rainbows are Too Beautiful writes a lovely message to say Thank You Little Girls after glimpsing some natural moments of acceptance and inclusion between her little boy and his classmates at his school assembly.

Raising My Autistic Son shared a post about her son’s experiences of trying to Access After School Activities and The World of Gorgeous Grace enthuses about the contrast she’s experienced in the holistic approach to inclusion after moving to a new area in her post: This is how to do Inclusion

However The Sensory Seeker speaks of a disappointing approach to inclusion at her son’s school in Not Being Different

Disabled parking, or blue badge parking, is a topic I keep meaning to write about myself, because there still seems to be a lot of misunderstanding about why it’s needed and what impact the lack of parking can have.  The Long Chain explains just what this means for her and her family in This is A Disabled Parking Bay

And finally, my fantastic campaigner friend Lorna has decided to dabble in the world of blogging! Her first post about changing places toilets Even our Hospital Doesn’t Have a Toilet That We Can Safely Use was published in the #HPEveryBody series on HuffPost UK! Please read and sign her petition for #ChangingPlaces Toilets at the end of the post!

I hope you’ll check in again next month to catch up with the blog posts in the round up, and bloggers I hope to see lots of you again this month and *meet* some new people too!

Inclusive Home

Info on how to join in below:

Linky Info:

I’ve switched over to Inlinkz for the linky this month as I think it’s a bit more user friendly, hope you think so too!

The 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, products and/or activities 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 under the badge image above 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 (use the hashtag #AccessLinky in your comment)!
  3. It would also be amazing if you could share your post (using the hashtag #AccessLinky) 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.

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:



Facebook: @SWANchildrenUK

Twitter: @SWAN_UK

Instagram: SWANchildrenUK


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

100 best disability blogs

Thank you so much to Stairlifts Reviews for including my blog in their 100 Best Blogs for Disabled People and Carers!

I’m in great company in this selection, with many of my own favourites, including: Down’s Side Up, Steph’s Two Girls, Special Needs Jungle, JBOT and Words I wheel By!

Some of the more well known charities & disability organisations (like Scope & Disabled Go) are also listed, as they have great blog posts, often by guest writers with personal stories or professional advice.

And many more (new to me) blogs to follow too!

Stairlifts Reviews 100 Best Disability Blogs

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.

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