Our Home – the inclusive home

November 6, 2016November 20, 2016

October Celebrations!

It’s been a busy few weeks in our (sooner to be) inclusive home!

Not only was it the half term holiday from school and nursery (seems to have come around V quickly since the summer holidays!), we also had….

1 x wedding anniversary! = a yummy grown up meal out!

2 x children’s birthdays! = one outing with the grandparents to the beautiful gardens at Ickworth House National Trust and one halloween craft party with the kid’s cousins and the neighbour’s kids – eek!

2 x more family birthdays …. and…

…. my 2nd blog anniversary!

Quite how I managed to set up and publish my first post in such a busy fortnight two years ago I’ve absolutely no idea!!

By lovely coincidence we had surprise cause for extra celebration just before my blog anniversary our planning permission for the adaptations came through several days earlier than we expected the decision! Very exciting! We can get on and get started, after all we’ve only been talking about it for two years 😉

I know the disabled adaptations process can be slow, but I would like to make it very clear that in this instance it’s entirely our own fault that it’s taken this long! Day to day life, work, a minor disagreement on the shape of the roof of the extension (a result of having 2 designers in the house!) and getting distracted with other projects (including this blog – oops!) has sort of interrupted actually getting on with the drawings and submitting the application!

I’d like to do a more detailed project update blog post in the next week or so (now that we have the official go ahead!) but I’ll try not to let that distract me too much form the actual project!!

We MUST try and get those detailed drawings started asap and keep up the momentum to achieving our inclusive home!

August 24, 2015August 25, 2015

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……

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!).

Just 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.

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!

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.

However 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!)….!

November 21, 2014February 17, 2017

bye bye outside loo

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

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!

November 8, 2014November 21, 2014

no one puts baby in the corner…

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

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!

October 31, 2014May 31, 2015

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!

October 31, 2014February 17, 2017

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: https://www.gov.uk/disabled-facilities-grants/overview

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!)!