April 2015 – the inclusive home

April 23, 2015April 8, 2021

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

April 6, 2015May 1, 2016

campaigns

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!

April 5, 2015August 15, 2021

adaptations

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.

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!

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!

Getting 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.

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).

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!