kidz to adultz

Wasp mascot at Kidz Exhibition

Last week we had a ‘family day out’ to the Kidz to Adultz in the Middle exhibition ( #K2A ) at the Ricoh Arena, in Coventry, run by Disabled Living.

Wasp mascot at Kidz ExhibitionIt’s a bit of a trek for us (about 1.5/2 hours), but there just isn’t anything else quite like it closer to home (…..if only there was a Kidz East – hint hint!!).

It’s a little like an Ideal Home show for mobility and independent living equipment, gadgets, accessories & services! – an opportunity to see (and try!) a whole load of equipment and products that you can normally only trawl though google to find (from sensory toys to motability cars).  There are also stands from loads of support and funding organisations and charities, and clubs doing demos of activities to try out (wheelchair basketball, music groups….).

It’s the 3rd year we’ve been.

On our first visit, Twinkle was just 3 years old and we were just beginning to grasp the extents of her disabilities and getting a feel for what support she would need.  That 1st visit was really just a reccy, we didn’t know what to expect or what we’d get out of the day.  It was a bit overwhelming at that stage and we were pretty unfocussed, but we did find it really informative and it opened our eyes to the range of products and services available.  This year and last we were more prepared and went along with a few specific priorities, in addition to a general wander around to pick up new info and ideas.

This year our focus seemed to be ‘getting out and about’: off-road wheelchair/buggies, walking aids and bikes.

Twinkle does already have a walking aid, but she has a tendency to lean into any support that she’s given and so she likes to swing & hang in the harness of the one she has, and hop along rather than step.  I’m not sure we found an ideal alternative at the show, but we did get a better idea of the variety of options, and tried one that seemed a better style for her, so we’ve arranged for the supplier to come and meet her physio and see where we go from there.  This is something that may be funded for her (on loan) by the Local Authority, to replace the one she has, for use at home and school.

EJ does also already have a buggy on loan from wheelchair services, and has in fact just been reassessed for a new wheelchair (which we hope to have in a few weeks time!).  Her new wheelchair should be great for day to day use, giving her the correct postural support and designed for use in a wheelchair accessible vehicle, however it’s not something that we can use ‘off pavement’ for walks on uneven paths in the woods – and EJ LOVES going to the woods and being in the natural (sensory) world.  We are therefore interested in seeing what options are available for a ‘recreational’ chair.  The Rolls Royce of all-terrain chairs seems to be the Delichon, and we did love it! Especially as it can also be used as a tagalong with a bike (so it hits 2 of our 3 targets!)…. but it’s a little (erm…a lot!) on the pricey side (!!!).  It was fantastic to actually see it, for EJ to try it, and for us to push it, and will give us food for thought about whether it’s something we want to pursue for her.

And that brings me onto bikes.  I had a lovely chat with the lady at the Cycling Projects stand.  A fab charity who support various centres across the UK to run cycling sessions for people with special needs and disabilities.  As a family we love cycling and we currently have a mainstream family trike (a Zigo Leader).  However EJ will be outgrowing the trike in a year or two and, as we’d love to continue to cycle as a family and also (if possible) cycle to commute with EJ to school, we are starting to gather ideas about what biking options we have for the future. Cycling Projects have a wealth of knowledge about adapted bikes and gave me some new ideas to research, plus suggested I get in touch with their local partner centre to try some of their bikes and help us fine tune our specification – something I’ll definitely be following up!

It was lovely to meet in person some contacts at various stands that I’ve come across and ‘met’ online, with who share my passion about finding, designing and/or developing inclusive & accessible products with style!  I’m hoping to keep in touch with, and perhaps meet up with, a few of them over the coming months.

Wheelchair with buggy board and seat for sibling

We also swung past, said hello, had a quick photo op and acquired a balloon from our lovely friends at SWAN UK – the fantastic support charity for families of children with undiagnosed conditions (like our Twinkle!).

I did however manage to miss all the seminars – including one on adapted housing that I’d really hoped to attend! Too much to see, combined with keeping two small children from getting too bored makes time fly!

In order that me and EJ & EWs Dad could split up at times (and incase I did actually manage to go to the seminars and leave Dad and the kids in the main hall) we brought our buggy board for EW.  The buggy board is one of my ‘finds’ from posting something like “How do you getting about with child in a wheelchair and a younger sibling?” to the goldmine of information that is an internet forum of parents of disabled children! I had loads of great suggestions (including baby and toddler carriers which are another of our go to options), but we loved this buggy board.  It’s a Junior X Rider which has a little removable seat attachment and an adjustable connector which allows it to fit to different styles of wheelchair/buggy.  We had quite a number of looks and several people came over an asked us about it – reinforcing to me that there’s definitely a need for spreading the word about good inclusive and accessible products!

A tiring but definitely a worthwhile day out!


I’m a little bit late with this one, as usual, but what’s a couple of months between friends eh?! – it’s still a very important message to get out and the Changing Places campaign, which the #barefootchallenge is all about highlighting, is very much alive!

So this is a post all about toilets, which, let’s face it, are a necessary thing in everyone’s lives! But for our little girl (and many, many other children & adults) the right kind of toilet facilities are just not normally available.

Twinkle is now 5.5 years old and is not able to use a toilet, so she wears nappies/pads.  Twinkle cannot stand without support so, for the time being, she has to be changed lying down.  Although very slim for her age, she’s also very tall and outgrew the little baby change tables long ago.  Since then, we’ve been very limited on where she can be changed comfortably, hygienically and with at least some amount of dignity.

The usual options for her are:

  1. Lie down on a public toilet floor. A room that (even the wheelchair accessible ones) don’t have space for a wheelchair, a person lying down and a carer all at once without squashing up against toilet bowls or sanitary bins.  (I myself have OCD so the very idea of putting my little girl in this position, quite frankly, freaks me out!)
  2. Perch precariously on the baby change table (which we sometime still manage to do, some are bigger than others),
  3. Change in the car (which we quite often resort to doing!) or
  4. Limit the time we are out and about to avoid changing at all.

# Bare Foot ChallengeThe #barefootchallenge was started on Twitter (@barefootoffical) by a fellow mum to raise awareness of the inadequacy of current facilities.

The challenge being:

Can you bring yourself to put your own bare feet on a public toilet floor?

If you struggle with that, imagine having to lie down on one like many children and adults with disabilities have to!?

As you can see from my challenge picture, my answer was NO!  I had to do my challenge in my own loo!

The easy solution to this issue is for more large public buildings and venues to install a Changing Places toilet! A facility with more space for carers, a height adjustable changing bench and a hoist.

I am ashamed to admit, until Twinkle started to outgrow the standard baby change facilities it hadn’t really occurred to me that alternatives to the standard disabled toilets were needed.  I hadn’t heard of Changing Places toilets.  This is pretty shocking because until I had children I worked in architectural practice.  I worked in housing so I knew a whole raft of other care design standards (e.g. lifetime homes, wheelchair design guide….), but not changing places. I know it’s a relatively new standard (to solve a very old problem!) but I would have thought I would at least have heard of it even if not used it in my projects?! Which makes me wonder how many of my fellow architects know of it, and know just how much a difference it could make?

Changing Places toilets do get a brief mention in the Building Regulations, but disappointingly (despite the Disability Discrimination Act (1995) and the more recent Equalities Act (2010)) they’re still not a requirement in any category of building,  just a recommendation:

“In large building developments, separate facilities for baby changing and an enlarged unisex toilet incorporating an adult changing table are desirable. Facilities incorporating adult changing tables are more commonly known as Changing Places Toilets and further guidance is available from the Changing Places Campaign website (www.changing- or by reference to guidance in section 12.7 and Annex G of BS 8300.” – Building Regs M Vol 2 (M3 5.6)

I’d say this is a pretty fundamental piece of inclusion lacking from legislation.

Thankfully the Changing Places campaign is starting to gather momentum, and they have recently launched a fantastic new map showing the locations of UK Changing Places.  It even has a journey planner element (a very useful feature!).  The map also sadly highlights  just how few and far between these facilities are (although I’m secretly hoping there are more than shown, and just not registered…?).  For example our own visitor/tourist hotspot city, Cambridge, only has 2 changing places listed! One of which is at the hospital – a location that the average day-tripper or holiday maker doesn’t normally intend to put on their destination list!

A friend at the Firefly Friends community forum, for parents of children with special needs, has also launched a campaign parallel to the Changing Places campaign – Space to Change.  Space to Change was set up to try and encourage other smaller venues, who maybe don’t have the funds or the space to install a fully compliant changing places facility, to at least improve what they have and provide more accessibility for a greater range of needs.  Perhaps install a fixed bench in a larger WC cubicle which would at least provide a more comfortable & hygienic space to lie down, and also make the transfer from wheelchair much easier than the floor!

So! Would you stand on a public toilet floor in your bare feet or lie down on the floor?

If not, then please spread the word about the need for Changing Places toilets!


Edited (30.03.16) to add:

And you can add your name to this petition calling for Changing Places to be requirement and not just recommendation!



A couple of weekends ago was a big first for me! I spent a whole day and an entire night in a new city without my family! And everyone was ok – not just ok, we all enjoyed it – woo hoo!

Papers from SWAN Bloggers workshopIt was a fab weekend.  The first (hopefully of more to come!) workshop of SWAN UK parent bloggers.  We were there primarily to discuss the upcoming Undiagnosed Children’s Day (UCD), on 29th April, but also to talk about all things blog and social media and how to spread the word about living without a diagnosis, how that affects children, their families, access to health services, education and social care.  With the very lovely bonus that I got to meet a bunch of amazing, determined, funny, normal and unique blogging women! – in real 3D life! – and those of us staying overnight took the opportunity to go out for a lovely meal, a chat (and of course a few glasses of vino blanco!)!

It was so funny to be out and about without my little ones, while talking a lot about them! I had to stop my auto-pilot manoeuvre, when sitting down at the table, to move all the cutlery and glasses out of Twinkle’s reach!

The workshop was really great, the fab SWAN coordinators were totally on it, and as well coming up with lots of exciting ideas for UCD that we can work on collectively, it has left me energised and ready to get writing more for my own blog and given me ideas that I can transfer to some of my own ‘campaigns’!

An aside to the day for me was that, after noticing a flurry of people asking about house adaptations on the SWAN parent forum, I put it out there to the bloggers attending the workshop that I’d be happy to have a chat over lunch or dinner about accessible design and the grant process. It’s pretty telling about the state of the DFG (Disabilities Facilities Grant) process, that out of the 11 people due to attend the workshop (excluding me, another designer & the SWAN reps!), FIVE (yes 5!, almost 50%!) of them I’ve either talked to in the past, or they wanted to talk to me on the day about adaptations!

I would love to be able to give more helpful advice about the actual grant process, but much as I’ve tried to actually understand the system, the more I read, or am told, the more confusing it seems to get!  The first thing seems to be that although there is a core national critera, each county appears to have different ‘rules’ about the detail, and finding those rules…..hmm, Franz Kafka springs to mind!

Laptop showing house planOur own experience has, so far, been good.  Our OT has been great and the slow progress is mostly our own fault as we have opted to take control of the reigns, do our own drawings, planning application and to administer the construction work.  However this is my ‘day job’ (or was until I had the kids!), so I’m confident about doing this.  Most people don’t have past experience of building projects and have to rely on the advice & services given by the local authority, which as I say, seems to differ greatly from county to county and doesn’t appear (ever?) to include any architectural design advice!

Many of my friends are telling me that the advice they have been given may improve accessibility in specific ways, but also compromises their homes in other, more fundamental ways.  With the grant (understandably) being a limited sum, it so often doesn’t cover the work required, so people are having to look into borrowing more, to do work that will help in some ways but will ‘devalue’ their houses, leaving them stretched financially and potentially in a worse position if they have to sell and move home.  A few have just opted out completely and are struggling on with no accessibility improvements.

I’m re-energised to try and get a message to those who can make a difference in this process.  A more cohesive grant process is needed, a more holistic attitude to the house and family and a long term sustainable view.

I’m compiling a to do list to start ‘shouting’ more loudly about this issue.  Of course, if there were more homes built to inclusive design and accessibility standards, people would have the option to move house, but there’s not – there’s really little or no choice in most areas!

First on my list I think is to start gathering case studies and survey experiences to try and demonstrate where and why improvements are needed!

So….who want’s to tell me their story!?

and the little one said…

View of our original hack of an Ikea Kura bed with wooden stair gates infilling the open side

We have just had a bed reshuffle in the house and everyone seems to be much more comfortable and settled – hurrah!

Twinkle has sensory issues and it often takes her a long time to settle at night, particularly on a busy day of sensory overload.  When she began rolling around proficiently (at around 18 months) she began to wriggle around her bed before dropping off to sleep and began get herself stuck horizontally across her cot. Then (as now) she still need the security of a full length bed guard to prevent her from rolling out.  We discussed her needs with her OT at that time, but as she was still only little and many of her contemporaries also still sleeping in a cot, we decided against a specialist bed in favour of the biggest cotbed we could find (by Boori)!

However, now at 5 years old, EJ still needs the same security of a bed guard but is a bit too tall for the cotbed and getting too heavy to be lifting up and over the side.

We also have her 2 year old little bro to think about, who was still sleeping in the original little cot (well he was supposed to be sleeping in there, but he hated it and usually ended up sleeping in the spare bed with me!).  He has been in the queue for some time to move into the big cotbed as soon as we found a better solution for Twinkle.

Again we looked around at some of the specialist beds available.  It’s so difficult to know what’s best as Twinkle’s future needs are not really clear, but we still feel (for the moment) that most special needs beds provide far more functions than EJ really needs.  We have found with bed choices, like many things, there are little or no solutions in between the standard mainstream offering or the full electric high/low and profiling specialist beds (which of course also come with a very weighty price tag!).

So we decided to try an Ikea hack!

IMG_4071 IMG_4073

We bought an Ikea bed a few months ago.  A reversible (high or low) bed with a good frame which looked like it should allow us to add some side guards in some way.  We mulled it over for a while and considered lots of different options until one day I looked at our stair gate and thought, that’s it!

So the ‘ingredients’ for our hack are:

  • 1 x Ikea Kura reversible bed (I think the idea could work the bottom of a set of bunk beds or a sturdy 4 poster type bed too)
  • 2 x Baby Dan adjustable wooden stair gates
  • 1 x Wooden post

We built up the bed following the standard instructions (we love a flat pack in our house! – like grown up lego).  The bed comes with one solid end, so between the two corner walls and this solid panel, there is only one long open side left to deal with.

We got a length of wood (in the same dimensions as the bed frame) and cut it down to fix it in the centre of the long opening to form a little column in the middle of the frame.  This gave us two ‘door’ openings to fit our two stair gates into.  Fortuitously the height of the gates is just right to fit into the openings without leaving too large a gap at the top or bottom to get a head stuck in!  (For balustrades gaps should be no wider than 100mm.)  In fact the gate sits low enough at the bottom so that the mattress overlaps any gap there.

Twinkle moved into her new bed at half term and so far it’s been great!  She has so much more space and having two gates that can be opened individually or together, means it feels much more open and accessible than the cotbed was – not to mention so much easier on my back when helping her in and out!

We have accessorised it with an old crib mattress as a padded headboard and have used one of our guest bed cubes from the Futon Company to provide a padded surface side stop any bumps against the wall.

The only negatives are that the top of the bed frame is quite low, so although it’s great for framing the stairgate, it’s just at the right height for an adult to bang their head on!

Also, the bed is a little high off the ground just now for Twinkle to reach the floor from sitting on the edge.  She can’t get herself in and out on her own yet, but it would be nice to be able to practice climbing in and out, so we may need to add a little step or platform.

It provides just the level of protection that Twinkle needs, i.e. prevents accidental rolling out of the bed.  I think if she begins to pull herself up to standing or trying to escape we’ll need to rethink.  However since it’s a standard bed we figure, if it doesn’t work in the long term, EW can have it as a cabin bed when he’s bigger and we can revisit our options for Twinkle.

IMG_4078Meantime the little dude is loving his new cotbed.  We have taken one side off and found yet another use for our other cube bed, wedged between the cotbed and the chimney breast, as a half bed guard for EW (I’m going to have to do a 101 uses for a cube bed post at some point!).  He’s loving the freedom of being able to get in and out of his own bed and is actually sleeping in it most of the time!

= More sleep for me! Hurrah!

there’s a lot we don’t know about genetics!

(An open letter to Heidi Allen MP & Daniel Zeichner MP)

Dear Heidi Allen & Daniel Zeichner

All party parliamentary group on rare, genetic and undiagnosed conditions

Today I’m joining with a group of bloggers to write to our MPs to ask them to  join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions.

IMG_3307This is Twinkle, my gorgeous, happy 4.5 year old little girl who just happens to have a genetic condition that all the standard NHS tests (and we have had a lot!) have so far been unable to identify.

I just don’t know where all the time has gone since our perfect little bundle was born and our ideal newborn baby bubble was quickly burst by an echocardiogram, a skull x-ray and some chromosome blood tests.  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’.

Living without a diagnosis can be very isolating, and especially as Twinkle was our first child, it was hard to tell if symptoms, or more accurately thing’s she wasn’t able to do, were anything to be concerned about. As the tests seemed to say otherwise, we often felt like neurotic first time parents.

It wasn’t until we were entered on the DDD study (Deciphering Developmental Disorders) and found the SWAN UK community (when our little girl was around 18 months old) that we  really acknowledged we were not a typical family.

Twinkle has a long list of symptoms all of which can also be attributed to many other conditions so they don’t really help give a full picture of her condition and mean that we do not know what the future might hold (in some ways liberating, as there are no preconceptions) but can also be very difficult – Will she walk? Will she talk? Will she be able to live independently? Will she develop any associated health problems? Will she have a shorter life!!!?

It’s quite likely you will have a number of constituents affected by a rare, genetic or undiagnosed conditions. It is thought that about 50% of children with learning disabilities and 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties.

Rare and genetic conditions are a significant cause of illness – 1 in 17 people will be affected by a rare condition at some point in their life and 4 in 100 babies in the UK are born with a genetic condition. It is estimated that 6,000 children are born a year with a genetic condition that will remain undiagnosed.  SWAN UK made this lovely little film for undiagnosed children’s day earlier this year to helps to spread awareness of just how common this is:

It would seem that we just don’t know how much we don’t know about genetics!  There is such a long long way to go 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 condition there, and that the family affected still needs the same level of help, support, treatment and therapies as those who are diagnosed with known conditions.

I am writing to you both as my constituency MP, and the MP of the constituency where my little girl will be attending special school.  As we fall the remit of both of your constituencies for different aspects of Twinkle’s care I felt it was important to write to both of you, and of course having MPs of different parties involved in these groups is so important!

The key aims of the APPG will be to increase awareness of rare, genetic and undiagnosed conditions in parliament and help to ensure that patients and their families, families like ours, who are affected by these conditions, have access to appropriate care and support.

Having had our brief 3 seconds of fame at the end of last year! (We and another local family were interviewed as a families potentially affected by a new genetic test being developed here in Cambridge).  I know that Cambridge is very much a centre of excellence in the area of genetic research and very possibly the source of amazing discoveries in the future which will help families like ours! It’s seems to me that this is not just a subject close to our family and our SWAN UK & RARE DISEASE UK community’s heart but also a subject right up Cambridge’s street! I do hope you feel the same and will consider joining the APPG.

The charity Genetic Alliance UK will be providing secretariat to the APPG, so please get in touch with them by emailing or by calling 020 7704 3141, and they can provide you with additional information.

I very much look forward to hearing from you.

Yours sincerely,
Vaila & the Morrison family

some temporary replanning

Now that Twinkle is mastering the bunny hop shuffle and her cheeky little bro has found his feet (and is running, jumping & climbing!), between them and our two dogs, our day to day logistics have become pretty stressful!  It feels like herding cats a lot of the time!

The dogs can be a bit excitable (as can the toddler!) so they spent most of their time in our kitchen/dining room and the children in the living room.  However there was always chaos when bringing the children into the dining room to eat (dogs and children everywhere) and quite a lot of lifting and carrying as, although Twinkle is shuffling around, she isn’t able to follow instruction/direction and we have a few steps between the two rooms.

So I decided to see if space planning could make a difference……

IMG_3755 IMG_3735

So last weekend we did a big reshuffle and moved the dogs beds, our dining table and officy type stuff into our front room and turned the kitchen/dining room into a kitchen/family room (please excuse the piles of junk on tables and shelves as the finer points of the reshuffle are not quite complete!).

IMG_3745Just over a week later and I don’t like it, I love it!

It’s made simple things so much easier.  I’ve managed to get dishes and cooking done while the kids have been happily playing together (well, maybe more like next to each other). I can leave food on plates on the worktop, and have even reinstated my fruit bowl! (Previously as soon as I turned my back or stepped out of the room one of the dogs would pinch any and all food!).

I suspect we won’t get so much use out of our dining table for a while, as the kids have a little table and chairs in the kitchen/family room to eat at, but it will make a good layout space for all my filing until we have dinner guests (not very often!), and until it moves to it’s new home after our alteration work is done.


are home design magazines accessible?

No, not directly anyway.

But, with a little shift in focus, I think they could quite easily be more inclusive.

I tend to buy a home design/refurbishment/style magazine each month. Not always the same one, I like a bit of variety!

This month (July 2015) I decided to do a little bit of homework and grabbed a selection of them. My perception was that there wouldn’t be much mention of inclusive design or accessibility, but I’d never really scrutinized them before and thought it would be an interesting exercise to be more analytical about it. And so, I decided to read my selection (Grand Designs, Homebuilding & Renovating, House Beautiful and Living Etc) word by word from cover to cover to see how many direct (and indirect) references I could find….

My criteria was: Use of the words (or variations of): disability, accessibility, inclusive/universal/design for all, flexibility and/or any articles which made reference to future needs, varying abilities etc. So my results were….

A pretty resounding: NIL 

This mini study was obviously with a very small sample group so I could be doing a disservice to the magazines I selected, however…

IMG_3587In the 4 magazines the only time I saw the word ‘accessible‘, it was in relation to the colour blue!

I spotted the word ‘disabled’ in one article (hurrah!), but it was just one sentence about how self building was something everyone can do, and unfortunately there was no expansion of the statement to explain the benefits that self-building held for those with a disability.

No use of the word inclusive at all (that I could find).

However there were a few articles that referred to flexibility for future use (mostly in the context of growing families.  I feel a little bit of extra content could easily have extended that concept to include families or individuals with other needs).

Another article mentioned multi-generational living. It’s an area which I find really interesting from an inclusive perspective, except that in this particular article it was used in the context of the older generation not selling up, and therefore causing a stagnation of the housing market.  (I’m not really clear how multi-generation living would cause a problem in this way as, it seems to me, to be a positive way to inhabit larger homes!?) – A slightly odd take on it I felt, but at least it was mentioned!

Also an ad for a new kit home (House Beautiful) covered multi-generational living.  This was one of the 3 show homes built at the Ideal Home Show. By far my favourite as it looked to me as if it probably complies (or comes close to) Lifetime Homes standards.

However although there were no direct references to inclusion, there were lots of articles and at least one or two lovely projects featured (in each magazine) that contained many aspects relevant to inclusive design. Lots of projects with big open plan living spaces, many ‘single level homes’ (bungalows!), some 2/3 storey homes with a downstairs loo (some large enough for a shower!) and a couple that also featured a separate room that I thought might be suitable to convert to a bedroom (if needed by a family member or overnight guest that couldn’t use the stairs)!

It would have been lovely to see these inclusive aspects highlighted and celebrated in the articles. An ideal opportunity to prompt people to think about their own future needs, and to think about how they could make their home more welcoming to disabled or elderly friends or family.  Not to mention giving some inspirational examples to people who are actively seeking to make their home more accessible!

And purely from a sale’s point of view…there’s whole market out there that isn’t being catered for (e.g. this gov article about the ‘purple pound’ on the high st)!



design that cares

It’s Carers week 2015 in the UK so I thought I’d write a little bit about us and about the difference a ‘care friendly’ home would make.

We are all on different journeys to become carers, for some it is a sudden occurrence (through accident or sudden illness), but for most (I think?) it’s a very gradual thing.

IMG_3402We didn’t know EJ was going to have additional needs when she was born, her neurological condition only gradually revealed itself to us.  She’s now 4.5 and is non-verbal with very limited communication and understanding, is mobile in a sort of bunny hop/bumshuffle fashion, can stand and take a few steps with support but is a long way from walking (if she ever does?). I still feel a bit weird about the term carer as it applies to me – I’m a mum, and being a mum to any child is being a carer – isn’t it? However I can see that the older EJ gets, the more I will fit into the role of parent carer. My days continue to involve a lot of guessing what she needs/wants, nappy changing, help with eating, lifting, oh and hugs!  Lots of hugs!

In my ideal world we’d already live in an accessible home, or at least one built to inclusive design standards like lifetime homes. When we bought our house it was more a matter of finding something we could actually afford in an area that my husband could commute to work from! The house we have is the only one we found that fitted those categories (it only fitted the affordability category as it needed quite a lot of TLC!) – but, it is not accessible.

We, like so many others, are ‘making do’ in an unsuitable house (for other people’s stories see Leonard Cheshire’s #Hometruths campaign).

We could move – but there is a real lack of accessible housing on the private sale market and almost zero on the private rental market.

We could join the council housing/housing association list – but again there’s a distinct lack of available properties and therefore any that come up are in extremely high demand.

Or finally, (and this is the route we are going down) we could adapt. (We are very grateful that there is some financial support for this in the form of the Disabled Facilities Grant, but it is a long process and, of course, is a limited sum – so to meet Twinkle’s needs our project will involve partially self funding – ie borrowing more!).

None of our options would be a quick fix, and most would involve a large amount of upheaval, stress and cost – something that people finding themselves needing care or in a caring role can little afford – and for that reason, many just struggle on continuing to try and ‘manage’ with what they have.

Unfortunately the house building industry often seems to pigeonhole design very much as ‘wheelchair friendly’ or ‘normal’. But what is ‘normal’!?

If you think about it, everyone begins life ‘disabled’! We’re not born walking, most of us begin life ‘on wheels’! Many of us will also end life with reduced mobility (not to mention the whole spectrum of conditions between cradle and grave that could affect our use and enjoyment of our homes (sight, hearing, dementia…..). To me it just seems wasteful and unsustainable not to design homes to allow for this transition as easily as possible!

Some councils, have adopted a standard called Lifetime Homes for new houses. It is meant as exactly that. It doesn’t have to be fully wheelchair accessible from the start, but that the fundamentals of the design should consider a whole lifetime’s needs. The house, and access to it, follow a checklist of features that would make life much easier for a disabled or elderly resident or visitor (and therefore also for those caring for them). The design should also take into account how it could be adapted in the future if needed (e.g. where lifts or hoists could be positioned for the greatest benefit and least impact on the rest of the family).

I would love to see this standard adopted nationally for new housing. It would ease so much pressure (both mental and physical!) for people if their home accommodated them easily, no matter their ability, without having to go through disruptive changes at a difficult time in their lives (not to mention helping free up space in hospitals if people can more easily return to their own homes!).

But the scope shouldn’t just be new houses! Like us, most people live in a ‘2nd hand house’! What I’d like to see is more inspiration and information out in the mainstream media about the benefits of inclusive and accessible design for everyone. There is the occasional article in the mags or a feature on home design TV shows, and (of course!) there is the gold standard – DIYSOS Big Build – who do amazing work! However generally these features tend to include a disabled family member. How often is there any mention of accessibility or inclusion otherwise? So often when these TV shows start off, the family is young and able, with no children (or pregnant, so many of them are pregnant!), building a home for their new family life – how fab would it be to discuss inclusive design in this context – a home that’s easily adaptable for whatever life throws at you?!

We need a change in perception! We need to get people thinking about how their home can be comfortable for the long haul? Consider flexibility for the future!

I understand that it may seem a bit depressing to be talking about degenerative health when you embark on a new and exciting house project, but inclusive design is not just about illness, disability and old age. Inclusion is about multi-generations. It’s about children, people with bikes to store, being able to get big furniture into the house without taking out a door frame! It’s about well considered planning. You only have to watch a few episodes of Grand Designs or read a few interiors and house design magazines and to see that people are aspiring to lovely wide open plan spaces, level garden decks etc – lots of things that are completely compatible with inclusive design. Nothing makes achieving wheelchair turning circles easier than minimizing narrow corridors and gaining more open plan living space! Lifetime homes/design for all needs is just an extension of what people are already moving towards. With an extra layer of thought added:  Where would a vertical lift go if one was needed in the future? Would a room downstairs be able to become a bedroom? What about wheelchair storage areas (also useful for bikes, buggies, kids trikes/scooters) or the downstairs loo big enough to fit a wet floor shower (- and how useful for hosing down muddy kids and dogs too!)?

We are all willing to take out insurances to protect our fincances when we buy a home, so why not consider our future needs in our home when making a big investment like an extension and/or refurbishment? I think people would be open to consider these ideas were they made aware of the the benefits and offered inspiration!

I think a lot can be learned from the way that improvements in energy efficiency performance has moved up the agenda in recent years. An Eco home is now a sellable feature so why shouldn’t inclusive sit proudly alongside eco on that estate agents brochure!?

Spectrum Sunday
Mummy Times Two

an ideal home?

On my quest to get up to date with what’s going on in the design world, and try to work out the amount of crossover there is between the homestyle and homebuilding sector and the independent living world, I’ve been googling, tweeting, browsing magazines and have gone along to a few shows/exhibitions. I had hoped to get to a few more (unfortunately the pesky issue of childcare foiled me there!) so I had planned this post as a comparison of some of the home shows and independent living shows, however as I did make it down to London Olympia for the last weekend of the Ideal Home Show, I’ll have to concentrate on that trip!


I was running late (as usual!), and almost managed to go to the wrong venue (Earls Court – oops!), but I made it just in time to catch the start of George (Amazing Spaces) Clarke’s talk! I really like George Clarke’s programmes, Amazing Spaces and Shed of the Year are particularly enjoyable, I think because they are so tangible to people – it’s so easy to imagine yourself getting stuck into a small project like the ones featured! In fact every time I watch Amazing Spaces, I end up on google looking for small caravans to refurbish (and I’m really not joking! – a bespoke adapted caravan would make holidays so much easier with Twinkle because sorting out a safe bedspace can be a major issue for us on overnight trips!)!

I love these sorts of exhibitions! There’s always loads see, but they can be pretty overwhelming unless you have a specific focus.

I think my favorite area this year was the garden zone, probably because it is most current in my mind – we are planning to sort out our own forest garden and would love to add a lot of sensory aspects. I’m also a little obsessed with inclusive playgrounds so I’m always looking out for interesting landscaping ideas, sensory elements and interesting textures.

As well as updating myself on design trends and picking up ideas for our project, the big reason for me going to the exhibition was to see how (if?) inclusive and/or accessible design was addressed. I’m afraid to say it really wasn’t much at all (I’m so sorry to pick on you, Ideal Homes, but as I didn’t make it to Grand Designs Live or the Homebuilding & Renovating Show, I don’t know how they compared).

There were very long queues for the full scale show homes (built in the middle of the hall!) but I felt I must look around the ‘Future proof home’ thinking it would be the one for me. Info on the route round was a bit lacking, the people in front of me were expecting futureproofing to mean technology and (of course!) I was thinking futureproofing meant design for life, but in actual fact it was environmental sustainability (we had to ask one of the members of staff at the end of the route!). For more information I was directed to the company who had a stand just outside. From an environmental point of view it was really fantastic, almost passivhaus standard which is exactly the right direction we should be going as far as I’m concerned from an energy point of view. However there was no specific reference to inclusive design or accessibility as part of the futureproofing. I got the impression that it was not something they’d really considered as ‘a thing’. Yes, of course they’d design for wheelchair access if the client asked, as each house would be bespoke, but for a product that is such a huge investment shouldn’t we be encouraging homeowners to consider their future needs? I get that growing old or considering ill health is not completely in the spirit of aspiration for an ‘ideal’ future, but people are willing to discuss insurances and invest in pensions for the future, so why wouldn’t they want to think about designing their house to adapt for their lifetime? – If they could be shown how inspirational design could make that a reality!?

The House Beautiful showhome was a different story. I have to say the actual aesthetic of the house was not completely to my taste (sorry guys!) but the important thing is that the internal planning has been well considered. The driver for them was to design for multi-generational living, and it followed that the resulting layouts are accessible and adaptable and look as if they follow most, if not all, of the Lifetime Homes principles. The bloke at the stand that I spoke hadn’t heard of Lifetime Homes, and it wasn’t mentioned on the literature, but if the plans do comply I think they ought to be celebrating that and using it as a positive sellable asset in the marketing of their new homes!

A few people I spoke to around the hall seemed interested but I didn’t feel it was something that was really on the agenda and one guy quoted some odd (very low) figures to me about the number of people who ‘need’ inclusive housing. On the spot I couldn’t recall any figures myself so I made a mental note to research the stats! (Edited to add this link to the government website giving some disability facts and figures).  However my point was, inclusive design isn’t just for people who ‘need’ it, it’s not just for the stereotype disabled person, it can just make life easier for everyone e.g. parents with prams and wriggling toddlers. When I put that to him, he said ‘well our parent’s managed’ – erm!? Don’t we want more from an Ideal Home than just managing? Shouldn’t our homes be designed to make life easier for all the family? Young, old and disabled or not?

As I was leaving the hall, I stopped at the map by the entrance and had another scan through the exhibitors to see if I’d missed the big accessible design area….but no, nothing obvious. A couple of the (very lovely and very helpful) staff asked if they could help and I asked them if they could think of anything. Neither of them could. I also asked them if they’d had many disabled visitors, and they said yes they had!

So Ideal Homes (and all other homestyle and homebuilding media), in planning your future shows I’d like to ask you to:

Please think about the disabled visitors you have that want to be inspired!

Please think about the vsitors who have disabled or elderly relatives and friends who could make their homes more accessible and welcoming!

There is a huge market out there that you are missing out on!



The mumtrepreneurs at Cheeky Chompers are extending their range of Neckerchew* products to include larger sizes for older children and adults with special needs!

We hadn’t used these baby Neckerchews before – I’m not quite sure how we missed them as Twinkle has been wearing dribble bibs since she was a little baby!

All bibs are definitely not equal in the dribble catching stakes. The basic cotton baby bib soaks through really quickly and usually result in a damp t-shirt so a little pointless for our needs!

I have found a number of different dribble bib brands that have been good for us (some of them are available in larger sizes for older children and adults too). The best ones have an absorbent layer of fabric over an non absorbent layer so that the moisture doesn’t wick through to clothes. A nice thing about the Neckerchew is that they’ve gone one stage further with a 3rd layer which makes the ‘back’ of the bib co-ordinate with the front rather than leaving the fleecy backing material visible, this also means you can use it either way around giving you 2 colour/pattern options.

The unique aspect of the Neckerchew is that it’s also got an integrated chew on the point of the bib. As a baby product I’m guessing this was originally conceived as a teething chew, but as the Cheeky Chompers have quite rightly identified, it is something that goes beyond teething. Many children (and adults) chew things for sensory feedback, often to help them concentrate – in fact many of us do to a degree, just think how many people nibble their nails or chew the end of a pen when they are thinking!

Twinkle has sensory processing issues, and she mouths and chews a lot of the time, which often results in extra dribble! The idea of having something she can chew actually attached to the dribble catching device is very appealing!

As this is our first Neckerchew, Twinkle hasn’t quite taken to the chew element yet. But I can see it being a big success, particularly when she realizes she can chew hands free without dropping her chew.

Another added bonus of the chew bit is that it weights the end of the neckerchief, so if it’s not being chewed, it sits nice and flat on her chest, rather than rolling up or even flipping up and covering Twinkle’s face (there have been many times the poor we lamb has had a bib blown up in her face when we’re out in her buggy and I’ve not noticed until we stop!).

These larger neckerchews are more expensive than the dribble bibs we’ve been using previously, but of course they do have the extra chew element and are double sided.  There is a good range of colour and patterns options, they have popper adjustments for different neck sizes and the larger sizes do allow for good coverage for an older child.

I can definitely see us ordering a few more (it’s always nice to have a selection of bibs to choose from to match Twinkle’s wardrobe!)

*I received a Neckerchew from Cheeky Chompers for this review but the views are my own

monkeys and swans

For Undiagnosed Children’s Day 2015

We said goodbye to EJ’s standing frame last week (the monkey – imaginatively named after the big plywood monkeys which sandwiched her). EJ is getting much stronger at standing up herself, so we prefer to practice dynamic standing with her, supporting her to play at her little kitchen or trying to encourage her to cruise. She has also ‘graduated’ into a gait trainer/walking frame (although at the moment she mostly sits down in it!) and has begun taking a few steps at a time.


EJ hasn’t been using the monkey for a while, so it has been kicking around our kitchen tripping me up and generally getting in the way (they are not small things!). I was really looking forward to it being taken away, help another little person, and give us some much needed space back (the gait trainer is also not a small thing!). However, as I was giving it a wipe down, and checking all the bits were there ready to be picked up, I got a bit emotional!

EJ’s condition is not something that we knew about when she was born.

All her antenatal tests were all ‘normal range’. There were a few hairy moments during labour and her birth and in the first few weeks, some of which prompted the paediatrician to order some chromosomal tests before we left the hospital in the first week, but they came back ‘all clear’ – oh ok!? – she was just a typical new baby then?

We were first time parents, so had nothing to compare our experience with, but gradually things didn’t feel as they should.

EJ began missing the milestones in the little red book and falling behind her little baby peers. It was noted at her first couple of checks but we were told it was probably nothing, they all develop differently (true), she is just a little delayed and a little floppy (I guess….?), it could be her her reflux (oh! that make sense), it could be the hole in her heart making her body work harder (so when that’s repaired……?)…..

But she’s falling further behind – ok – more tests (more ‘normal’ results)…….

It was all very vague and confusing….

She was medically ‘normal range’ but she wasn’t following the charts, she wasn’t keeping up with her peers and she didn’t have the muscle control she should have by now. It was never made clear that actually it was quite common for children with genetic conditions to get an all clear on the tests currently available (approx 6000 a year in fact!). Nobody said to us (given her symptoms) that it was highly likely she had some form genetic disorder no matter what the results of the tests. We were left feeling confused, even neurotic and paranoid, with nowhere to go to ask. The doctors were all great individually, and of course asked us if we had any questions, but we didn’t really know what the questions were!

It was when EJ was around a year old that we began to gather a selection of different specialists, referrals to therapists, and there were talks of developmental delays and low muscle tone, more tests (all with normal results). No use of the term disabled…… (so she’d catch up – right?)

The monkey arrived when EJ was about 21/22 months (shortly after she had begun to sit up unaided at 18 months). It was the first proper ‘disability aid’ that we had. Looking back now I suppose it was a symbolic moment in time. A tangible, physical object that marked our change in perception of how things were and how things were going to be for us. The way our lives were moving in a different direction to that we’d imagined.

EJ did have additional needs. She didn’t fit the baby book formula.

We continued going to mainstream toddler groups (and still do go when we can, as I think inclusion is very important for both EJ and for the other children) but until now we had been trying to fit in, conform, but we were really on a very different road. We couldn’t join in with the usual new parent chat (weaning, crawling, first words etc).

Sometimes you just need to be with people who ‘get you’.

It was another 9 months or so after the monkey arrived in our house that our geneticist suggested entering J into the DDD (Deciphering Developmental Delay) academic study. With the DDD pack there was a leaflet about a charity supporting families of children with undiagnosed conditions – SWAN UK (Syndromes Without A Name).

I went home, joined SWAN UK, and we found our fit!  We found people who ‘got us’!

Our first few years would have been so much easier if we’d had that support, that wealth of knowledge and experience, that place to ask random questions, that comfort of knowing we were not the only ones.

We are all on such different, yet exactly the same, journey into the unknown – we are all swans families!


Friday 24th April is the 3rd Undiagnosed Children’s Day raising awareness – hopefully reaching parents who need SWANs support and putting a call out to the medical professionals who can point new families in the direction of such a much needed resource at such a vulnerable time in their lives.

SWAN UK is funded by a lottery grant until May 2016…..but we, and so many families, need it’s continuing support and so many new families starting that scary journey need SWAN to be there for them.

This post is part of the Undiagnosed Children’s Day BLOG HOP


As you can probably tell from the title of the website, I am passionate about inclusive design!

Inclusive design is design for everyone, not just for wheelchair users, not just for old people, it’s for everyone – from cradle to grave and all stages in between – it’s for you!

Of course everyone’s needs are different, so good design should allow for those differences, provide alternatives, be flexible. If you are young, fit, able bodied it’s easy to be oblivious to how our buildings and environment can put up barriers for some, but break your leg or even try pushing a pram or pulling trolley suitcase around and suddenly things can seem very different.

(This document by CABE is a good summary of the principles of Inclusive Design in the built environment: Principles of Inclusive Design)

As an architect I’ve always considered accessibility as an essential factor in good design, however becoming a mum to a daughter with limited mobility has given me a new perspective on this and highlighted to me more gaps in the process and failures in design.

Although an inclusive approach to design is becoming much more the norm in the public realm and publicly accessible buildings, and also more in new-build housing (although of course there’s a long way to go!), existing housing seems to be off the radar. As the majority of people live in existing houses, it means that many people are living in homes inappropriate to their needs (highlighted currently by the Leonard Cheshire #hometruths campaign). People are either making do, or are forced to join the housing lists for council/social housing (putting extra pressure on an already overwhelmed system), or have to make house adaptations, (many applying for a Disabled Facilities Grant, DFG, putting pressure on county council funding budgets).

We have an enormous way to go to make our spaces and places truly accessible and the very fact that we have to differentiate ‘accessible design’ and ‘inclusive design’ from simply ‘design’ means that the issue of inclusion is not a given.

As designers we have a crucial role to play in producing places, spaces and homes which welcome people of all abilities and there needs to be a greater emphasis on the consideration of future uses and houses which can adapt to future needs.

I have a few ‘campaign’ ideas of my own, where I believe the design and building industry could generate some positive change:

  • Better access to holistic design advice in the Disabilities Facilities Grant process;
  • Promoting the inclusive design approach (perhaps a lifetime homes type checklist) for all refurbishment & extension projects in existing homes – try to get everyone thinking about improvements to accessibility in the same way as they would think about improvements to energy performance.
  • Inspirational inclusive design ideas and features in the mainstream home style and home improvements media;
  • Accessiblity ratings system for finding a home to buy or rent (there is a rating system for finding accessible holiday lets, so why not one for finding a home to live in!?).

I’d love to hear from anyone working on initiatives in these areas or with other ideas to make accessibiilty ‘mainstream’ and inspirational!