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!