Please Don’t Abuse The Sunflower Lanyard Scheme!

As an autism and SEN advocate, mum of an awesome autistic son, and autistic woman myself, I just want to say… please don’t ruin this scheme for everyone!

Note: it isn’t just the Sunflower Scheme being abused, but they’re the most well known.

Max’s sunflower lanyard has helped to reduce the number of rude stares he gets in public!

One notable thing that the pandemic has done is raise the profile of the wonderful Sunflower Lanyard scheme, giving it some great additional publicity and awareness. However, it could be argued that this extra publicity has actually had a detrimental effect on the credibility of the scheme, as it has become way too open to abuse – I’ll explain why soon enough.

What is the sunflower lanyard scheme?

The Sunflower Scheme was launched in 2016 in order to create a discreet, yet well publicised system whereby invisible disabilities were indicated to help people to avoid potentially awkward situations – for example, many young people with stoma bags have faced horrible comments for using disabled toilets, and people who have had amputations that are hidden under their clothes or by excellent prosthetics have been known to find themselves under attack for using disabled parking spaces even with a visible blue badge! It’s also great for people with less ‘visible’ disabilities like autism, Ehlers Danlos Syndrome, MS, etc.

(Shoutout to my fellow autism & EDS zebras!)

A great informative information about face masks & the lanyards

On the whole, this scheme has worked marvellously, with major supermarkets like Tesco becoming stockists.

With the introduction of face mask wearing due to the pandemic, the UK government declared there to be a list of a small demographic of people who are legally EXEMPT (much to the outrage of some people who simply don’t ‘get it’, sadly) from wearing masks – this tiny minority are mitigated by the very large number of people who are able to wear theirs.

The sunflower lanyard has been very valuable for people needing to do important errands but unable to wear a mask due to their disability, and the lanyard indicates this without any awkward questions (usually), whilst still being used by those who are able to wear theirs, but wanting to indicate their invisible disability for other reasons. I’m able to wear a mask, and I do, but those who seriously struggle find the lanyard such a lifeline.

However, with the pandemic came the problems…

People with genuine disabilities are becoming increasingly fed up, and wrongly targeted in public as awareness of the fact that people are abusing the scheme grows.

A small but insidious group of individuals have well and truly HIJACKED this brilliant scheme because fundamentally there is NO legal way that anyone can prove that you aren’t exempt when wearing one, technically no one is allowed to ask for proof of your disability! I’m in two minds about writing this at all because by doing so, I’m potentially giving people ideas but at the same time, this needs to be discussed more, I think, because it’s outrageous. It needs exposing. Here’s a good example of what I mean…

I’m not getting into the ins and outs, rights and wrongs of mask wearing rules, but abusing a scheme meant for disabled people is really pretty gross.

Whilst the scheme is marvellous, it’s too open to abuse, clearly.

The increased awareness of this scheme due to the Covid-19 pandemic has led to many online postings by anti-maskers where they’re bragging about getting their lanyard so that they can go about their life mask-free without being questioned, but this utterly undermines the entire purpose of the lanyards, and has now hugely impacted the credibility of the scheme because that seed of doubt has been planted in people’s minds.

Before covid, you could wear a sunflower lanyard and people wouldn’t question if you’re ‘faking it’ usually. Now, not as much the case, and they’re often eyed with suspicion.

It’s such a shame, isn’t it?

My personal view on the scheme is now one that I find disappointing but necessary… to avoid this abuse, proof of disability should be provided when applying, in my opinion. Usually, most of us would have some form of documentation available or be able to get a note from a GP. But is it too late? Has the damage already been done?

Fake versions and lanyards at inflated prices are also being flogged elsewhere online, another example of abuse of the scheme!

A spokesperson for Hidden Disabilities told Fabulous Digital:

“We are aware that sadly, some people are abusing the Hidden Disabilities Sunflower Lanyard Scheme by reselling our lanyards and other wearables at inflated prices for profit on sites such as Ebay and Amazon.
“We have registered with eBay as the verified retailer of the Hidden Disabilities Sunflower product and owners of the trademark and copyright to restrict the reselling of them.
“They have image recognition software that identifies a copyrighted item and blocks it from being sold. We monitor the reselling of our own products regularly and sellers are reported to Ebay for violation of their policies.
“It is worth noting that there are a number of official resellers that are charities reselling our products on these sites. To be an official reseller you would have been issued with a certification badge, so please keep an eye out for these as they are legitimately doing so.
“Amazon have today assured us that they are going to be removing all the listings currently on their site.
“We continue to work with both Amazon and eBay to resolve the situation.”

Blimey, that was a long one.

Long story short, if you’re not disabled and you’re abusing these schemes for your own agenda, you’re actually causing harm to the community of people who rely on them the most. You’re also… a massive dick.

Hopefully my next post is something a bit more positive and exciting, eh?

Katie. Xx

(Image credit to The Hidden Disabilities Sunflower Scheme)

Yes, My Child is STILL in a Pram – Quit Staring!

*Warning – passionate post ahead!*

Those who know me will know how INTENSELY this winds me up. Like, you know the sort of fury that comes tinged with genuine upset, that actually makes your chest ache and your head spin? The sheer injustice of it makes you want to turn around and scream ‘fuck off’ in public like a demented lunatic, because how dare they judge you and your child? They don’t even KNOW your situation.

A lot of SEN mums I’ve chatted with find this easy to ignore, whilst agreeing that it’s rude and irritating, but I’m a very sensitive person clearly because one dodgy stare absolutely ruins my whole day!

When random strangers stare at Max in his buggy it really hurts. Don’t get me started with the side eyes, the eye rolls, the tuts and the clucks… and the folk who turn and mutter snide comments to their companions. And OK, admittedly I’m probably assuming a lot of the stares are rude/uneducated, but still, it is RUDE to stare even if you have kind intent!

Even Max knows it’s rude to stare, guys!

But why does it bother me so much, really?

It hurts because I am well aware that there is a preconceived notion in society that a child should be walking independently in public well before the age of 4, especially when they’re as large as Max, who is now wearing clothes for the average 6 year old – he’s built like a brick shithouse and set to be a good 6 foot something – so of course, I feel right in thinking that a good portion of starers are going to wondering why such a large child is still in a pram. The jump to negative assumptions about me and my perfect, wonderful child is WHY it bothers me.

It doesn’t help that comments along those lines are rife on social media too, so it’s very clear that this is still a pervasive attitude that I can see for myself!

“Why is she not MAKING him walk? Jeez, how spoiled is he!”

What it all boils down to here, is assumptions.

The assumption that I’m too lazy to deal with the ‘tantrum’ and make him walk.
The assumption that Max is lazy and spoiled.
The assumption that, because Max doesn’t ‘look’ distinctly different to non autistic children, that he is on par with his peers and just being spoiled.
The assumption that he can actually deal with large amounts of strangers, traffic flying past, new sensory input bombarding him, whilst trying to pay attention to walking in a straight line and stay safe.
The assumption that the ensuing ‘tantrum’ is actually a bratty tantrum and not… an autistic meltdown due to severe sensory overload that has lead to several close calls with roads, car parks and crowds.

The truth is, a lot of children on the autistic spectrum actually need to be in a buggy or specialist buggy-wheelchair for very, very good reasons, even if they physically don’t ‘appear’ disabled or have physical problems. My child’s safety is more important than what you think is ‘normal’, fundamentally.

Imagine, in 2021 when the world of invisible disabilities is being championed and campaigned for, people can still stare and make rude assumptions about a child who has one.

If you ever see a large child still in a pram/buggy, they’re likely in one for a very good reason, even if this isn’t obvious. For us, it’s all down to safety and I’m not going to compromise on this just to stop strangers from being ignorant.

Luckily we can cope without a pram if he has 2 or more adults close by, or in places away from roads, crowds or other hazards, but we live in a built up area with a lot of traffic and I’d never forgive myself if he had an accident that could have been prevented by USING the buggy (and reins, when he actually lets me put them on him…).

I’m sure any parent, even those who don’t really understand autism, could relate to that… Right?

Don’t stare, be autism aware! Feel welcome to save and share – just don’t redact my credit like some cheeky people do please!

Love from Katie & Max. Xx

First Steps – I Think My Child is Awesomely Autistic

So you think your child is autistic or in some way neurodiverse… now what?

First of all, congrats! Welcome to the coolest crew ever. 😉

Simply put, your next step varies a lot depending on where you live, and who you already have involved. Different countries, and even different areas in the UK, will have different processes and protocols for getting your child assessed.

This list is as exhaustive as possible but if you have anything you think could be valuable to add, please do shout in the comments!

• Childcare settings – voice your concerns but bear in mind, they’re not qualified to tell you your child definitely is/isn’t and only have a limited view of your child each day BUT they can do observations and 1:1 to track and identify markers, missed milestones etc. Input from the SENCO (Special Educational Needs Coordinator) is always valuable!

A personal note – anyone who has done an ‘Understanding Autism’ course has done a course that is super outdated and which uses really dehumanising language, I don’t endorse it and personally I take info with a pinch of salt from anyone who thinks this course in any way truly represents autism!

• Health Visitor – the pandemic may mean you do this via Zoom, but they may want to do some additional observations over a period of time before referring you on, IF your local area does it that way! Because, as I said, it varies.

• GP – your GP may be able to directly refer you to the relevant person, paediatrician etc at your hospital nearby however this depends on area. Where I live, the hospital doesn’t accept GP referrals, it all goes via our community paediatrician who is based in a surgery in town. More convenient than driving to Derby, I think! Your GP may also be able to sort out an OT (Occupational Therapist) referral if your child needs equipment but like I said… it varies between areas.

• SALT – if your child has a speech delay too, very often SALT is the first port of call for identifying markers and getting valuable reports written that may contribute towards the diagnosis. This was certainly the case for us! Our Health Visitor did the initial SALT referral but I’ve heard that some areas do a self-referral system, and in others your nursery/school/other childcare setting can do the referral.

Short & sweet, and I’ll edit this post as my knowledge of processes grows!

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These days, the typical mummy blog is dressed up, carefully curated, and perfectly filtered – none of the nitty gritty, blurry photo bombs, screaming kids in the background and rushed ‘freezer bingo’ dinners that your average parent can probably relate to – particularly an SEN parent living in a WILD neurodiverse household!

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