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!



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!)….!

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!)!