We are a family of four (Mum, Dad, 6 year old EJ and the 3 year old EW….plus two pointy rescue dogs).  Like most families, we have a selection of differing needs in our home (human and hound!), the most notable, in relation to accessibility, being that our 6 year old has an undiagnosed genetic condition which affects her overall development, including her mobility.

cover photo family image

When EJ was born we lived in a small one bedroom flat in London which we had lovingly refurbished. Unfortunately (after looking at many contortions of the plan to try and squeeze another bedroom into the small footprint) we had to accept that it was just too small for our growing family.  We couldn’t afford to buy a family home anywhere nearby, so when I was pregnant we made the decision to move out of the city altogether.

We were very lucky to find a ‘fixer upper’ in a village with a station on one of the mainline commuter routes to London.  Our (accidental!) tactic of housing hunting in the run up to Christmas definitely seemed to have given us an advantage! – not as much competition at that time of year and we found that the vendors were keen to get things agreed before the holidays! The house also needed a lot of TLC, which I guess may put a lot of people off!

We think the house was built as a fruit picker’s cottage at the turn of the 20th century.  Although it’s made of a local east anglian ‘block’ called clunch and rendered on the outside, the layout inside is of a fairly typical 3 bedroom semi-detached Victorian cottage.  It does have a funny little later side extension which means there is a bathroom upstairs without losing any bedroom space.  At the time we bought it, EJ was just a few months old and we had no idea about her condition or how it would affect our future.  If we had known, perhaps we would have made a few different choices about the house at the time, although getting a working heating system, re-wiring, new kitchen and bathroom and basic decorating took us to the limit of our budget, so it’s hard to see what else we would have done at that stage.

Three years on and we now find ourselves in a house that doesn’t really meet the needs of our family. EJ has very limited mobility. She bum shuffles and can walk a little distance with adult help or in her walking frame. Outside we use a specialist buggy/wheelchair but rarely bring it inside (partly as it’s nicer for EJ to shuffle around independently, but mainly) because we have an awkward threshold to step over at the front door and a very narrow corridor, plus more steps throughout the ground level, narrow doorways, and no storage for the wheelchair or her walking frame.  The wheelchair therefore lives in the car and the walking frame in the kitchen or at school. However the biggest issue is that we have to carry EJ up and down (our very steep!) stairs to bed.  Slim as she is now, she is only going to get heavier!

So we have two options: Move or Adapt!

Unfortunately there is an acute shortage of suitable accessible properties available on the market, and those that are available are either way over our budget or would need so much spent on them that it would take them over our budget – therefore moving is really not a viable option.

So we find ourselves looking again at the design of our home to see what alterations and adaptations can be done to best include EJ in as many aspects of family life as possible.

Thankfully there is some financial support in the Disabled Facilities Grant (DFG) available which will help us to fund many of the essential adaptations.  (The DFG is means tested for adaptation for adults, but not for children, and the advice and process can be very hit and miss, stressful and is very inconsistent from county to county – improving the process is one of my missions!)

For us it is key to ensure that anything we do now to improve accessibility will be as flexible as possible to allow for EJ (and the rest of the family)’s changing needs……….not to mention trying to keep the house feeling like a family home and not a healthcare setting!

Read more here….

supermarket logistics

We are very well serviced in our village as we are within walking distance of various grocery stores, a butchers, bakery, deli and chemist! However there’s only so much I can carry, as I always have at least one of the children with me, so I do tend to do at least one supermarket shop each week.

I know I really could order my shopping online, but I’ve never found it as convenient as it sounds, and anyway, I like going around the supermarket picking out exactly what I want, seeing the items, checking out the special offers, spotting new products and maybe stopping off for a coffee and maybe a piece of cake!

One of my favorite new ‘tech features’ is the scan as you shop system – which thankfully is available in both of the supermarkets close to us. It just makes things so much easier! Twinkle has low muscle tone and will flop sideways, forwards or hyperextend backwards, so she needs more supervision in the trolley seat than the average child. She doesn’t have danger awareness, so she doesn’t understand that she could fall out (- or that it would hurt!)!  So, especially at the end of a trip around the supermarket (as she’s getting tired and bored!), trying to go through the normal checkout is tricky – loading the conveyor and then reloading the trolley while keeping the children safe in the trolley.

Now that Twinkle is at pre-school part-time, I try to do our supermarket trips when I just have the wee dude with me. However that’s not always possible – especially in an ‘Eeek! There are no nappies left!’ emergency!

IMG_2371Getting around the shop with both children is a bit of a challenge. Twinkle (at 4.5) is really much too tall for the standard toddler trolley seats. She can’t walk, so we have several methods of getting around:

Twinkle’s Buggy:

Sometimes we go around with Noodle in a carrier on my back & Twinkle in her chair. This is fine (particularly if we’re also popping for a coffee!), but it means we can only pick up a basket full of essentials, so Noodle and I have to come back at a later date when Twinkle’s at pre-school. Unfortunately the wheelchair type trolleys don’t fit onto a child’s sized wheelchair/buggy.

Nappy cushions
Nappy cushions

Trolley (method 1):

Until recently I have been putting Noodle in a carrier on my back and Twinkle in the trolley seat (or both of them in the twin trolley if I can find one!). However she’s really much too tall and a bit top heavy/precarious in the toddler trolley seats. Also, I really don’t like her sitting in them for any length of time as it puts quite a lot of pressure on the backs of her thighs as her long legs dangle from the short seat. I try add a little more depth to the seat and padding to the edge with the padded fleece cover from her buggy and I also will go straight to the nappy aisle and stuff a of pack of nappies either side of her for some makeshift cushioning!   If I have been organized enough to remember it!, we can use her Firefly goto seat for much better support (which really helps, but we still have the same problems of height).

IMG_2689Fleece seat liner

Trolley (method 2):

To avoid the problem with the little toddler seat, I sometimes put Noodle in the seat and sit Twinkle in the actual basket of the trolley. I often see other preschoolers sitting in trolleys as I go around the supermarket, so it’s doesn’t feel like a completely crazy solution! The fleece cover from her buggy again can double up as padding so she’s not sitting and leaning on the wire directly, and (again!) I head straight for the nappy aisle for some ‘cushions’! It’s really not ideal, but I feel it actually provides her a more comfortable seat than the little toddler seat – however doesn’t leave me much space for shopping and I have to be careful what I put within reach!

There is another option…..

Firefly have developed a fab new adapted trolley with a supportive seat for a child with disabilities, based on their Goto seat (the Goto Shop). The height of the seat in the tolley is lower than the usual toddler seat, so you loose that precarious top heavy issue, and the depth and back of the seat are increased in size for a larger child who needs support.  It does reduce the capacity of the trolley but not so much as if you have a child actually sitting in the trolley as I often do!  Sainsbury’s supermarkets have taken up these trolleys in their stores, and we’ve come across them a few times (it’s amazing how excited you can get about a supermarket trolley!), but unfortunately there isn’t a Sainsbury’s store near us.

It would be fantastic if more retailers had at least one available in their stores!

I know that Tesco have a similar adapted trolley which is fantastic, however it doesn’t provide enough support and security for Twinkle so it only works for us when we bring our own Firefly Goto seat with us.

I had a nice chat with the duty manager at one of our other local supermarkets this week when I was in about the Firefly trolleys and he seemed really enthusiastic about the idea! So, fingers crossed for more availability…….watch this space!



playground fun

Feeling the vibrations, Robert Burns Museum, Ayr

I spotted a poster on our village notice board a few weeks ago for a consultation event about a new children’s playground for the village, and (being both a mum and an architect!) I couldn’t stop myself from going along and to see what it was all about!

It was a really well attended event and exciting to see lots of families engaging with the ideas being displayed!  Lots of drawing and children and parents filling out comments forms.

There were 4 concepts tabled by 4 different companies (Hags-SMPKompanPlaydale and Wicksteed).

The proposals all catered for a large age range (toddler to 12ish years old) and all of them had fun suggestions. I don’t think I really favoured any one particularly over the others – there were similarities and differences that made them all interesting in different ways.

Culzean Country Park, National Trust for Scotland
Culzean Country Park, National Trust for Scotland

Our request was (surprise surprise!) for the final design to consider inclusive play and equipment as much as possible!

I am passionate about EJ being able to join in activities with her friends and siblings (in her own way). However, I think it’s also so valuable for all children to have the opportunity to meet and interact with children with differences, because the more they do, the less ‘different’ disability becomes.

It would be fantastic if more playgrounds featured inclusive activities and equipment, that everyone can use. This approach is not just about enabling children with additional needs, but also allowing siblings and friends of varying ages, and even mum or dad to join in, and play together. Inclusive play also often equates to more imaginative play, as children find new ways to use equipment and join in with activities.

Cherry Hinton Park, CambridgePlaygrounds are really important to all children’s development (balance, body awarenes etc) but for children like EJ with sensory processing disorder, vestibular stimulation (things like swinging, spinning around, bouncing) is particularly important – it’s all fun therapy and learning!

I’m always on the lookout for places that EJ can join in with her brother and cousins.  I have a list of our favourite playground equipment on pinterest, that I try to spot when we are out and about and passing new places, and I’m also starting to gather ideas on my pinterest boards for fun (and lots of sensory) things to do in our own garden (some are more achievable than others! – unless I get Alan Titchmarsh’s team to come and sort us out!).

In the playground, we love:

Nene Valley Park, Peterborough
  • Swinging – who doesn’t love a swing! EJ is too tall now for a toddler swing so we particularly like the big basket type that she can lie in safely.
  • Spinning – there are lots of cool accessible roundabouts on the market now which are flush with the ground and that you can push a pram/buggy/wheelchair onto.
  • Bouncing – trampolines, rope bridges, nets (again, fun for everyone!)
  • Textures – EJ loves the feel of sand!
  • Scrambling – Things to crawl over and scramble about on (like mounds and tunnels)

My favourite new idea from the day was adding a saftey net below a rope pyramid climbing frame which EJ could lie or sit on and would be able to feel the bouncing and vibrations from other children climbing on the ropes – she would love that!

Meanwhile, 16 month old EW spend most his time monopolizing the little slide, so I guess he was trying to tell us his preferences lie there!

being undiagnosed

We are an average family of 4 (Mum, Dad, a 4 year old girl and a 1 year old boy, oh and two dogs!), apart from the fact that our gorgeous 4 year old girl has an undiagnosed condition.

Other than a hole in the heart and a bacterial infection at birth (both pretty common newborn problems) EJ’s condition wasn’t immediately apparent, only gradually coming to light as she began to collect other ‘symptoms’ and began to miss her developmental milestones.


It took a while for us to really twig that things were going to be different for us. In fact, being undiagnosed we still really don’t know how differently things will pan out in the future.  She has had all the normal tests the NHS can offer, chromosome anaysis, micro-array, MRI scan etc but no underlying reasons have been identified. EJ’s condition results in Global Development Delay and Sensory Processing Disorder.We now understand her condition affects of her overall sensory processing (visual, auditory, cognitive) which, along with hypotonia and is hyperflexiblity, has slowed her general development.

I have mixed feelings about the need for a definitive diagnosis (or not!).

In many ways being undiagnosed is a positive thing. We (and everyone else around her) have no preconceptions about how EJ will be in the future so we can just ‘get on’ with giving her the best chances we can for her to develop in her own way –

she is just our unique little girl

However there are also are lots of reasons why having a diagnosis IS important to us. A diagnosis could give us some vital information about potential health and development issues that could occur in the future which would help with future planning (including our house adaptations). It could allow us access to a support network of other children and families with the same issues and perhaps an exchange of ideas on particular therapy options, health issues, prognosis. Also from a totally administrative point of view, it would give us something to enter in the box marked ‘diagnosis’ in the miriad of forms we have to fill in to access therapy, education, funding and also give us a nice quick response to the quizzical looks from new people we meet….. ‘Undiagnosed Condition with Sensory Processing Disorder and Mobility Impairments’ is quite a mouthful!

EJ being undiagnosed has also meant that for a long time our journey was very confusing, and at times pretty lonely and isolating, as we didn’t ‘fit’ anywhere, not in mainstream and not in any particular special needs group…..that is until we found SWAN UK!

We were given a leaflet about SWAN by our genetics department as part of the package of information given to parents of children entering the DDD study (Deciphering Developmental Delays: an academic study looking into detailed DNA variations to try and diagnose rare genetic disorders). I popped straight online when I got home, joined the charity and found ourselves in the midst of a national network of families on the same (but often very different!) journey into the unknown! SWAN has given us a fantastic online community for chat and support…

in SWAN world being undiagnosed is the new normal….we fit!

grant application approved!

We’ve had some great news for our house project!

Our application for DFG (Disabled Facilities Grant) funding has been approved by the panel!

It comes with slightly mixed emotions, as the feedback was that the panel deemed it quite clear that Twinkle’s needs require us to make significant changes to our house, which will most likely take us over the maximum grant limit. Of course we know Twinkle has additional needs and has impaired mobility, but living day to day you sort of forget!  Our life with Twinkle is just ‘our normal’ and it does still take me aback on the occasions when, without much question, our little girl is slotted neatly into a ‘disabled’ category by others.

IMG_2754However this is very good news for us! Needing so much intervention means that the OT & surveyor are now in a position agree the proposals with us without having to return to panel. This, along with partial self funding, gives us more flexibility within the design and planning and able to pursue our preference for ground floor living for Twinkle, with full (and hopefully independent!) access throughout.

So it’s out with our fat pens and tracing paper to look at our options for getting the best from our house (for Twinkle and the whole family!)….!

inclusive products focus group

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

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

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

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

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

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

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



Our 3 favourite Ikea products are:

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

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

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


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

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

twinkle twinkle media star

Twinkle is a SWAN, she has a ‘Syndrome Without A Name’.

Despite having had all the tests the NHS is able to offer, we still don’t know the reason for her neurological condition. She has been entered into detailed academic study called Deciphering Developmental Disorders (DDD) by her geneticist. This is a very long process as each variation in the DNA is studied (we submitted our samples 18 months ago and still no news!)!

Eilidh, Elliot + Vaila

SWAN UK (the fantastic family support charity we are members of) were recently contacted to see if a family local to Cambridge, and on the DDD study, would participate in an interview about their situation.  We were interviewed by BBC Radio Cambridgeshire and BBC Look East a few weeks ago! The TV clip now on the BBC website (view here) includes a little clip of us and of another family, as the background for exciting developments in diagnosis for rare disorders coming out of the DDD study.  Congenica, based in Cambridge, are developing new software which will allow a much more detailed and efficient diagnostic test to be offered than is currently available.  This could be huge for families like ours!


bye bye outside loo

In the spirit of getting things moving in the right direction, we organised to have our ramshackle old outbuilding demolished……

image-6 image

A little bit sad as the outbuilding was a remnant from the original victorian orchard cottage, and would have been the original coal shed and outside loo (which had been replaced with a working modern loo at some point!).  Unfortunately the building had already been partially demolished so the larger fruit store was already gone and the remaining structure was crumbling beyond saving.

However it’s very exciting to actually be able to see the garden from the house now!

no one puts baby in the corner…

Well, sometimes they do as it’s the only space left! (spot the wee face!)

no one puts baby in a corner

With the arrival of Twinkle’s new walking frame, I decided I needed to rearrange things in the house in an attempt to get some floor area for her to practice walking in!

At the moment we have a step up into our living room and into our kitchen/dining room from the hall, so Twinkle wouldn’t easily be able to get from one to the other in her walker (we are optimistic that this will become a problem when she gets the hang of walking in it!).

Our living room is a little small and generally the floor is strewn with toys that little bro likes to distribute evenly around, so we’re going to stick to walking practice in the kitchen/dining room to start with.

It’s an open plan room with a breakfast bar separating the dining table from the kitchen, but with quite a big gap at the end of the breakfast bar, so there’s a nice wide strip of floor from the kitchen past the end of the breakfast bar and dining table, and also between the dining table and the breakfast bar ….. well ….. that would be the case if we didn’t also have to accommodate:

  • the walking frame itself (it’s not small!)
  • Twinkle’s high chair (a postural support chair with a big tray)
  • Wee Bro’s high chair
  • Twinkle’s standing frame with table (which to be honest she has really outgrown in size and development so I’m hoping the physio will agree and it can soon move on to a new home and help another little person…..and give us a little extra walking space!!!)
  • a travel cot which doubles as a playpen/safe space for either child when I’m cooking/washing up or dealing with the dogs and/or the other child
  • Plus, the dogs beds, which have been slotted under the end of the dining table (– which actually they quite like as it’s like a little den for them).

(this list doesn’t include puschairs – we have a special needs buggy, a double buggy & a mainstream single buggy – which live in the car most of the time as we struggle for space indoors)

So, the result is a game of 3D tetris each time we want to use a piece of equipment!

Storage for this additional equipment would be so useful for us, but aside from the clutter factor, the lack of floor space makes it a bit of a mission for us to actually use the walking frame properly. I know the same issue affects so many other families, whether a walking frame, a wheelchair or hoist (or a combination of all three!) – space and planning is key!

feasibility visit

We had a visit from the council Surveyor and Occupational Therapist at the beginning of last week, to talk through the feasibility of adapting our home to meet Twinkle’s needs, and how we might access some funding through the DFG (Disabled Facilities Grant).

The OT is our daughter’s usual OT (although quite newly assigned), so already knows a bit about her, however this was our first meeting with the surveyor. He was very nice, friendly and open to discussion on possibilities and solutions – I’m not sure whether the fact that myself and my husband are both architectural designers was a good thing or not from his perspective! – but it did mean we were able to give him our survey drawings and were able to make the most of the meeting for discussing our needs and ideas rather than him spending part of the time measuring up!

Quite understandably it is part of the surveyors role to come to the most cost effective solution to meet the needs of the person. As a general rule they will try to avoid proposals that involve extending if possible, as extending is always going to be more costly than working within the existing building. However, in many cases, it is difficult not to compromise the house for the rest of the family if you have to ‘steal’ space from the existing house. We think we’ll opt for a compromise between partially funding with the DFG and partially self funding (well with the help of the bank!) to get the best out of the house.

One thing that came out of the meeting (and that I’ve seen mentioned in lots of posts in support forums) is that there seems to be a lot of focus within the DFG process on installation of vertical lifts. This is obviously a lifeline in many situations, especially in cases where the persons disability is permanent or degenerative, but (as in our case, and maybe more often when it’s a child) we don’t feel it’s always appropriate.

In our situation we feel we have two main options:

If Twinkle continues to sleep upstairs we need to:

  • make the ground floor fully accessible (including level access at the front door, level floor throughout, open out under the stair for wheelchair turning and storage and widen doorways),
  • build an extension to the bathroom upstairs to make it accessible
  • install a vertical lift

If Twinkle’s bedroom moves downstairs we need to:

  • make the ground floor fully accessible (including level access at the front door, level floor throughout, open out under the stair for wheelchair turning and storage and widen doorways),
  • build an extension to the cloakroom/utility to make into an accessible wet room/bathroom
  • build rear a extension to replace the living room which will become Twinkle’s bedroom

In either case we’d need to do the same amount of work to the ground level to make it accessible and the same size extension to either the bathroom or cloakroom to achieve an accessible bathroom. The difference being either the installation of a lift or building a new living room extension.

Although having Twinkle sleep on a different level to the rest of the family feels a bit strange, we feel that, for various reasons (emotional, practical & economic), concentrating our adaptations on the ground floor is the right thing for us, both now and in the future.

We don’t want to design in pessimism. I think some of the professionals think we are wishful thinking when we say we don’t want to rule out Twinkle being able to get up the stairs herself in the future. At the moment she’s light enough to carry and we will continue to carry her until it’s not feasible. However she beginning to move around on the floor and can stand up with support, and in the last few weeks she has been starting to take some steps – so we think there’s every chance she might be able to manage the stairs one day. In fact she’s just as likely to be able to climb the stairs as she will be able to operate a lift safely on her own! So we feel that for us it would be a waste of money and resources that we’d much rather spend on making the ground floor fully accessible to Twinkle, allowing her to be able to make her own way (whether that’s crawling or walking or in a wheelchair) from her own room, into the communal family area and to the bathroom/wet room – enabling her to be as indpendent as possible!

starting the process

This is going to be a weekend of planning for us! The start of the process of adapting our house – exciting but daunting too!


Our house is a Victorian cottage of a fairly standard layout. It needed a lot of TLC when we first bought it (it had no central heating system, a fetching pink and avocado 
bathroom suite and no fitted kitchen!).  As a couple of architectural designers this suited us perfectly, as we love a project! However at the time Twinkle was just a few months old and we had no idea about her neurological condition or how that would affect our future.  If we did, we would have made some different choices in the design.

It has been an emotional journey to get to this point too. Twinkle’s condition only very gradually revealed itself to us and it has taken time for us get into the mindset that we do actually have a disabled daughter and that does and will continue to have an impact on how she, and the rest of the family, can use our home.

We therefore find ourselves looking at grant funding for making some adaptations to allow our little Twinkle to join in fully with family life:

Our lovely Occupational Therapist made her first assessment visit to the house a few weeks ago and we have a follow up visit, with both her and a building surveyor, on Monday. We are taking this weekend to arm ourselves with a strategy on how we’d like to progress the project.  We want to ensure that anything we do to improve accessibility now will be as flexible as possible for Twinkle’s ever changing needs (we are not ruling out the possibility that she may be able to get up the stairs under her own steam one day!) and we don’t want to scupper any further alteration options for our home in the future……….not to mention trying to keep things stylish (well as stylish as you can be with two small children and two dogs!)!