When your child has a disability that has made potty training an impossibility, you are left with a growing dilemma - finding nappies that fit your child.
Nipping down to the supermarket just isn't an option because they only go up to a certain size when they would expect most children to be out of nappies while the ones you buy online carry a price premium.
One mum decided to do something about it. Laura Rutherford had already dried appealing to Tesco on their Facebook page and despite much support from other uses Tesco didn't seem to hear. So Laura has made a Titian on changed at all and would really like you to support it. Today on Special Needs Jungle she tells us her story.
A few months ago, aside from our close family and friends, no one really knew that our beautiful boy Brody was disabled. That we have had two years of hospital appointments, therapies, various testing and a year of petrifying seizures. Not for any reason other than we just get on with life, which has its ups and downs like everybody, but on the whole is great. We’re a fantastic team – even if I do say so myself!
However, thanks to my frustration that supermarkets don’t sell larger nappies for children with additional support needs, I think everyone may now know our story.
Brody has Global Development Delay, which means he is significantly delayed in all areas. Speech and understanding is his biggest delay, he can’t talk at all – frustrating for him and us. Like many kids with GDD, he also has hypermobility, hypotonia and epilepsy. We haven’t yet had a diagnosis for him – he is our SWAN. We’ve taken part in the DDD study, but haven’t yet heard back. Did you know that 6000 children are born every year with a genetic condition that is likely to remain undiagnosed? Possibly not - unless you’re the parent of a disabled child AKA a Google expert!
Anyway…nappies! Brody is a tall boy and has just turned 4. He wears the largest nappies available in supermarkets, 6+, but they are not going to fit him for much longer. I am aware that there are Pull Ups, which are slightly larger, but they are designed for kids in the process of potty training. Hence there is less in a pack and the absorbency isn’t as good. They’re not adequate for a child who is doubly incontinent.
My only option - aside from trying out cloth nappies, which isn’t really for me - is buying nappies online and this just isn’t convenient. It’s my opinion - and that of many others in my situation - that they are also really overpriced. They have that special needs price tag. You know, the one where they add lots of £££’s on top because hey, life isn’t difficult enough for you?
Brody is about to be referred to the continence service and hopefully, once we’ve waited a while (my friend has been waiting six months so far) we will receive a set amount of nappies per day. This is a fantastic service and very much needed there is no doubt. However, it is also massively inconsistent depending on where you live in the UK. Referral age, eligibility, waiting times and the number of nappies you receive, differs hugely. This leaves parents with no option but to buy online and they are forced to spend over the odds.
I know people don’t think about these things unless they are in our situation, but how is this justifiable? Don’t get me started on public toilets (shout out to Changing Places for fighting our corner there!).
At the end of November 2015, I tried to make this point on Tesco’s Facebook page. 2,882 likes, 1,108 shares and 681 comments later and I didn’t feel like they were really listening. I was told that their buyers had received the request but there were no immediate plans to sell bigger nappies.
As a result, still fuelled by the unfairness of it all, I created a Change Petition asking all of the supermarkets to consider manufacturing or selling larger nappies. As I write, I have 7,240 signatures. That’s a lot of people, but unfortunately, I think it will take a lot more for them to take notice. There are thousands of people either in my situation, or who know people who face this dilemma. I’m fortunate that despite the waiting time, Brody will get referred to the continence service at 4. A lot of other people aren’t as lucky.
There is such a demand for this product. It’s a kick in the teeth to parents of disabled children that you can’t find the products you need easily and at a reasonable price. It’s a simple thing that would make such a big difference. Supermarkets have the opportunity to lead the way and cater to a huge community that is often disregarded. This is about inclusion.
If you feel the same way, please sign my petition and ask your friends to sign it too. I think like many things, we will need to fight for this. We’re a large, amazing community – let’s shout together and make them listen! You can find my petition here. Thanks so much for your support.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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