I’m taking part in the SWAN UK April Instagram Challenge in the run up to Undiagnosed Childrens Day 2017 on Friday 28th, to raise awareness that being undiagnosed is ‘a thing’, and that there is help and support out there!
SWAN UK is the only dedicated support network available in the UK for families of children with undiagnosed genetic conditions. They have been a lifeline to us, at a very isolating time, and continue to be a hugely supportive community which we are so glad to be a part of! (You can read a bit more about our undiagnosed story here.)
To join in with the instagram challenge, check out the @swanchildrenuk account and follow #undiagnosed to see all the posts!
Today (day 13) is “What’s in your bag?”
Whenever I’m out with the children I carry my Pink Lining changing bag, so it holds quite a lot! In fact I’ve been known to use it for going to (unrelated to children) meetings as it’s pretty good as a laptop bag too!
Other than my phone, the first thing in my bag is always my hand gel and antibacterial wipes. I have pretty hardcore OCD so I don’t go anywhere without them.
EJ’s rare condition comes with various symptoms (hypotonia, sensory processing issues and learning disabilities) which mean she needs to wear continence pads (nappies) at present and for the foreseeable future. At 6 years old she outgrew baby change tables long ago, but as she needs a changing bench (many people also need a hoist for transferring) she cannot access regular “disabled loos”. You may have noticed from previous blog posts, that I’m a big supporter of the campaign to provide toilets with greater accessibility! Changing Places Toilets being the recommended standard for larger buildings and venues in the British Standards (BS 8300), but they are still rarer in the UK (less than 1000) than the number of children (that SWAN UK would love to support) born with undiagnosed genetic conditions each year (6000!)!
Whether we find a changing places toilet or not (most often not – sometimes we’ll be offered a first aid room but we usually have to ‘make do’ a changing space in the back of our car as I cannot entertain the idea of laying EJ on the floor of a regular toilet, and neither can my back!), I still need to take changing bits and bobs (wipes, pads, spare clothes and a change mat). Picnic blankets or yoga mats are quite a popular choice for families who need a change mat, but I couldn’t be without a machine washable solution, so I jumped at the chance to trial a prototype of Care Designs by Bibetta’s slim neoprene mat! I love it, and we use it both at home and out and about, as it provides a soft cushioned surface and also waterproof and thermal separation from the floor/carpet/bench (which would wiped down first with antibacterial wipes of course!), and, as I may have already implied, is machine washable! It’s bigger than a baby change mat sure, but no bulkier than the average picnic blanket, and it fits nicely in my bag with room to spare, so it definitely ticks the boxes for me!
Another essential is a cup for EJ. Actually this is not quite as critical as it was in the past, as she’s come on loads and is able to drink (with help) from a sports type bottle or from a straw, and can even take some sips from an open beaker! However she has always found it difficult to drink thin liquids (dysphagia – I have just looked up the medical term!) and will easily choke, so it’s better that she drinks from a restricted flow cup. Since our favourite Tommy Tippee training cup was discontinued, we’ve tried various alternatives, and I’ve recently discovered the Miracle 360 cup by Munchkin which is my hands down new favourite! As the name would suggest, you can drink from any side of the cup, but it’s also non spill (which is fantastic as EJ has a tendency to drop her cup when she’s finished taking a drink!). It’s also made up of 3 simple parts with no hidden crevices for germs to breed, and is easily taken apart for washing!
There are always a few toys in the bag too, usually a cbeebies magazine, puzzle or duplo to occupy EW (essential if we stop at a cafe!) and a favourite chewy and/or jingly toy for EJ.
And finally, at this time of year I’ve got the added sun cream, sun hats and glasses!
(SWAN UK relies on grant funding and donations to support and connect families like ours, and keep undiagnosed and rare conditions on the radar of legislators! You can text SWAN11 £3 (or any amount up to £10) to 70070 to help them carry on the great work!)