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Original poster

Using a sunflower lanyard on DS

62 replies

SpinningTops · 12/10/2024 14:54

DS is on the waiting list for an autism assessment.
He is difficult to manage when out but he has excellent language and to an outsider would probably look like a naughty child. I stay close to him at all times and try keep a hold of him but he will writhe out of a handhold immediately. He finds it difficult to follow a given instruction, he touches everything and we have meltdowns.

So should I use a sunflower lanyard? I'm fed up of feeling like a rubbish mum who has little control.

My main hesitations are that he doesn't have a diagnosis (but will probably be 2 more years until we reach that point)
And also I wouldn't want to meet people we know as we haven't told friends and feel it's not something we want to share at this point without having seen a professional.

OP posts:
LittleBrownBaby · 12/10/2024 15:37

As someone with little experience with ND children, I find the lanyards helpful when I see other families. For example I would offer for them to go ahead in a queue (not making it really obvious) or you would just try and be understanding or accommodating in any way you can. I think if it will help you and your family you should do it.

OrdsallChord · 12/10/2024 15:38

SpinningTops · 12/10/2024 14:58

Maybe not. I thought many would but perhaps that's just because I have relatives with one.

Not everyone will know, but lots of people will. So if you think it would be helpful for people to be aware, the lanyard will mean more people know than would without it.

QuirkyUmberDog · 12/10/2024 15:45

And anyway a lot of ‘undiagnosed’ ADHD is just bad parenting, so the lanyards will lose meaning.
Ear defenders and chew toys, carrying a weighted blanket are all more obvious signs the problem is real and being dealt with.
As the ‘it’s his ADHD’ brigade wouldn’t be using them.

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Superworm24 · 12/10/2024 15:57

The problem is that lots of people who are undiagnosed use them. I remember people moaning about them on SM during covid and many people were saying negative things. A manager of a shop said that she thought people using them were trying to queue jump etc. So I don't know if people would excuse the behaviour more or less?

Chakkakhan · 12/10/2024 16:01

SpinningTops · 12/10/2024 15:30

@Chakkakhan yes, I think this is one of my reasons for being hesitant. I would do it if far from home / no chance of bumping into people but it does feel like once someone we know sees it then we will have to explain / they will assume and I'm not sure we're ready for that before a diagnosis is received.

But then I feel it would help people understand his behaviour and be more tolerant.

I might get one and use it sparingly when he's struggling / having a hard time.

I reckon that’s a good plan.

Sadly, the problem is other people. If I see a kid having a meltdown, I just feel sympathy for the parents. Kids can be really difficult at times ND or not. and it’s a massive difference from a kid who is being rude or not being parented.

I’d say most people are more understanding than you’d think- they are just less vocal.

recently, a kid came up to our table in a cafe and started eating our leftovers…it took milliseconds for me to realise the kid was ND/or had learning difficulty because the behaviour wasn’t age appropriate. So we just politely stopped her eating it. Her parents were over in seconds and the dad was really embarrassed and felt he had to explain she was autistic.

i felt really awful for him, that he felt he had to explain himself. no- one was judging him but he was mortified. Are you feeling like that OP?

I’ve been in the same position myself, but it helps to just learn to ignore rude people and focus on the fact that most people understand.

Crazyeight · 12/10/2024 16:01

I probably wouldn't purely because my ds is 6 and up and until 6 months ago was as you describe. Then he must have gone through some kind of developmental leap and most of it has stopped. I still think he's probably autistic and he's on the list for an assessment but some of his behaviours were just standard 5-6 year old I think.

TigerRag · 12/10/2024 16:01

Superworm24 · 12/10/2024 15:57

The problem is that lots of people who are undiagnosed use them. I remember people moaning about them on SM during covid and many people were saying negative things. A manager of a shop said that she thought people using them were trying to queue jump etc. So I don't know if people would excuse the behaviour more or less?

I'm undiagnosed and will probably never get a diagnosis. My needs are still just as valid

(Not an ND diagnosis)

Heartofglass12345 · 12/10/2024 16:04

I think it will be useful if he is a wanderer, the one we have has a card on it where you can write any needs they may have and your phone number. You could always keep it for days out Smile

Superworm24 · 12/10/2024 16:04

TigerRag · 12/10/2024 16:01

I'm undiagnosed and will probably never get a diagnosis. My needs are still just as valid

(Not an ND diagnosis)

Edited
Show quote history

Maybe they are but there are people out there diagnosing themselves as ND after watching a few tiktoks. Like anything, it only takes a few to ruin it for everyone else.

ilovemoney · 12/10/2024 16:07

I have one for my non verbal 5 year old. She also has a learning disability. She looks normal but my concern is he might run off from you and it will help if he has the lanyard on. It has your contact details on there.

Detchi · 12/10/2024 16:15

Superworm24 · 12/10/2024 15:57

The problem is that lots of people who are undiagnosed use them. I remember people moaning about them on SM during covid and many people were saying negative things. A manager of a shop said that she thought people using them were trying to queue jump etc. So I don't know if people would excuse the behaviour more or less?

I would say some people abuse them, whether diagnosed or not.

I don't see that as a good reason for people not to continue to use them in good faith. If anything we need non-CFs wearing them to counteract any image issues!

ramonaquimby · 12/10/2024 16:21

I think it started off as a well intentioned scheme, but the lanyards are so ubiquitous now that they aren't so noticed. It's also unregulated so bought by those outside of target market.

Original poster
SpinningTops · 12/10/2024 16:23

Heartofglass12345 · 12/10/2024 16:04

I think it will be useful if he is a wanderer, the one we have has a card on it where you can write any needs they may have and your phone number. You could always keep it for days out Smile

He wears a bracelet thing with our number on just in case. He hasn't got lost yet because we watch him constantly but predict it will happen one day.

OP posts:
funkystars123 · 12/10/2024 16:23

Needmorelego · 12/10/2024 15:02

@GrazingLamb if used in places such as shops, cinemas, train stations, theme parks etc then the staff should be trained to know what it means.
@SpinningTops use one if you want to but the important thing to remember is don't give a f whether some random person thinks you're a bad mum - YOU'RE NOT 💐

This!!

Both my kids are autistic and I have spent far too much much time worrying about what other people think...

They are teenagers now age feel strongly that they don't want to wear sunflower anything as

'Why do I need to explain'???? And I agree...

I know it's hard but don't feel you have to explain in any way why your kid does things in a different way to others...

Original poster
SpinningTops · 12/10/2024 16:27

Thanks all. I generally don't care what others think. I have ridden out many a meltdown and carried a screaming child out of shops and through streets.

I think it's actually more the minor behaviour that I feel needs the explanation. The touching everything and the fact that someone will be with him at all times with their hand on a shoulder / hood whilst he tries to slip our grasp.

OP posts:
ByTealShaker · 12/10/2024 16:29

I feel you…

would he even wear one though? You can get little pin badges, but I suppose other people might not read the tiny writing. Not everyone knows what the sunflower lanyard is for either unfortunately. I get the stares too and it’s shit.

SeulementUneFois · 12/10/2024 16:36

SpinningTops · 12/10/2024 16:27

Thanks all. I generally don't care what others think. I have ridden out many a meltdown and carried a screaming child out of shops and through streets.

I think it's actually more the minor behaviour that I feel needs the explanation. The touching everything and the fact that someone will be with him at all times with their hand on a shoulder / hood whilst he tries to slip our grasp.

Can you try using reins for him OP?
That would help with him trying to get away from you.

MargaretThursday · 12/10/2024 16:38

I think generally people are more sympathetic than you feel they are, if that makes sense.
I mean, if I saw you I might glance over if it was noisy. I wouldn't think anything other than sympathy for you. Been there, done that as it were. But if you're feeling embarrassed and judged, you might well interpret the look as judging you.

I don't think I would use them for a few reasons (ds has ASD and ADHD, but was diagnosed later). One being that there is a feeling that they have been misused by people who haven't a diagnosis. I have no idea whether that is generally a thing, but I think that is often public perception.

FuzzyGoblin · 12/10/2024 16:42

I don’t think that many people realise or care what the lanyard stands for (or perhaps they don’t believe the child is neurodivergent). I have three autistic/ADHD children and two of them dislike the feeling of the lanyard from a sensory perspective so you might find you need to wear it on his behalf.

No33 · 12/10/2024 16:52

I only use them in the airport.

I do find people tend to seem kinder when wearing them.

Original poster
SpinningTops · 12/10/2024 16:54

He wouldn't tolerate reins. I have wondered about a wrist strap for when he's being flighty but again, he wouldn't accept it.

He is very bright and articulate and he would question it. Any kind of restraint would bring about a bit fight, he really doesn't like to feel penned in.

OP posts:
glittereyelash · 12/10/2024 16:55

My son has autism. Everywhere we go we bring a spare change of clothes, some sensory toys, ear defenders, a fly swatter(he's terrified of any flying bug), chocolate , a jam card and his lanyard. 9/10 times we dont need any of them but we just go prepared in case he gets overwhelmed or something unexpected happens.

x2boys · 12/10/2024 16:56

It's just a lanyard anyone can purchase, the original idea was a good one ,but I think they were overused during the.pandemic ,and I'm not sure people take much notce of them now ,but if you think it would help than try it.

Areolaborealis · 12/10/2024 16:59

I think a lot of people simply wouldn't notice the lanyard. I can't recall ever seeing one in use but maybe its just gone over my head with all the other signage and distractions.

XenoBitch · 12/10/2024 17:01

There is no harm in having one for him. The website you buy them from do smaller child lanyards, and you can get fidget toys to attach to them if that is something that would help your DS. You can opt to have a card with more details on, but that is up to you.

I don't agree with the PP saying that people without a diagnosis are "abusing" them. For starters, they are for all hidden disabilities, not just ND... and the wait to get a diagnosis for ND runs into years. You do not suddenly become disabled once you have had a diagnosis - you will have been before. Some people use them because they are partially sighted, deaf etc.

I have one, and use it for when I am feeling particularly vulnerable and might struggle to communicate. It just shows that I might need a bit more time and understanding.
My DP has one (with a card saying he is autistic), and has found that some people talk down to him like he is stupid. His choice to wear it though.

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