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.
It’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.
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!
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!
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.
Meantime 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!
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
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:
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!
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.
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.
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.
Playgrounds 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:
- 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!