Kindness Campers, please!
And the Courage to Be Better
Something happened in a vanlife group that’s been sitting heavy with me. I won’t name names; this isn’t about starting drama. But someone posted a photo of a stranger’s motorhome, mocked their parking choice, and framed it as concern for a nearby child who was in said photo.
It felt like a public shaming wrapped in community concern. And I think we need to talk about it.
A Personal Lens
I travel solo with my beautiful son, Leo. He has Down Syndrome, joyful, full of curiosity, and his extra chromosome means he sees the world a little differently. We don’t always get things right. We sometimes park a little wonky, rarely level and probably painful to watch, but that being said, we’re learning. We’re part of this community. And we do our best.
So when I see someone being ridiculed publicly, online for something that could have been sorted with a kind conversation, it hits home and it hits hard.
This Wasn’t About Football
Let’s be honest, this post wasn’t about a child or his football. The child had parents. If there had been a genuine issue, they could have handled it. The problem was the view. That the poster’s view was “spoiled.” That someone else dared to park in a way they wouldn’t have, and obscured the view they’d previously enjoyed.
And instead of a gentle word, they reached for their phone to photograph it.
The Real Risk Isn’t Speaking — It’s Shaming
The poster justified not approaching the person by saying they didn’t want to risk confrontation or damage to their van. But there’s a much greater risk in quietly taking photos of strangers and children, and posting them to ridicule in public forums.
What if the person in the photo was in that particular group? What if they see it? What if next time, Leo and I are the ones being photographed because Leo does something a bit different or unexpected, but harmless?
There’s a real safeguarding concern here, not from the people being judged, but from those behind the lens.
The Community I Do Believe In
I refuse to believe that this person is representative of vanlife. And I’m saying that with full confidence, because Leo and I have had nothing but kindness from fellow campers and travellers. We’ve had DMs, comments, waves, advice, even strangers popping over to say hello or offer help.
That’s the real community. That’s who we want to be around.
The Plea
We don’t need to be best friends at every pitch. But we can choose to be good humans. We can offer guidance instead of judgement. Kindness instead of callouts. And patience instead of passive-aggression.
Please tell me that person was the exception, not the rule, because Leo and I are trusting this community with more than just miles. We’re trusting it with moments and memories. We’d like to believe we’re in good company.
🧭 If this resonated with you, we’d love to hear your thoughts. Share a story, a moment of kindness, or a time you felt welcomed. Let’s show that this community really is made of good humans.
#TheWonkyCompass #vanlife #mumswonkythoughts #CookingCampfiresChromosomes #VanlifeWithHeart #kindness
When the Clock Strikes 16: The Legal Shift Every Parent Must Know!
What happens when your disabled child turns 16? If you think your rights as a parent continue, think again. This is the legal cliff edge no one warns you about…until it’s too late.
🎂 On your child’s 16th birthday, your legal rights to make decisions on their behalf start to fall away.
🎓 On their 18th birthday, they’re gone altogether, unless you’ve taken legal action.
Let me put it another way:
If your child needs ongoing support with medical treatment, finances, or day-to-day living, the moment they reach those magical milestone ages…
it’s not you that professionals are required to listen to anymore.
It’s the state.
It’s the school or college.
It’s the doctor, the nurse, the social worker, the hospital safeguarding lead.
And if your child doesn’t have the capacity to make those decisions for themselves?
Well, that doesn’t mean you get to step in.
Not unless you’ve jumped through the legal hoops.
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💼 What You Need To Do
If your young person has a learning disability, you may need to apply for something called a Deputyship Order through the Court of Protection.
This gives you the legal power to make decisions on their behalf about:
💰 Money and finances
🏥 Medical care
🧑⚖️ Education and welfare
🏡 Where they live and who supports them
If your child has capacity, you may be able to set up a Lasting Power of Attorney (LPA) instead, but this must be done with their full understanding and consent. Most children with moderate to severe learning disabilities won’t meet this threshold.
Either way: you must act early.
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🚨 Don’t Get Gazumped by Strangers
I use the word gazumped deliberately.
Because unless you have legal authority in place, when that decision room forms, whether it’s a hospital ward, a transition planning meeting, or a funding panel, you might be present, but you won’t be powerful.
Imagine watching people in that room override your knowledge of your child, people who have met them twice, or read a report, or think they know best.
And imagine having no legal leg to stand on, despite being the person who’s been wiping tears, administering meds, advocating for their rights, and lifting them, quite literally, every single day of their life.
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🌩️ I Chose to Be Ready
I’ve included an image with this blog, a bit of metaphor made painterly.
It’s me, Mum, towering with a quiet smile above a sea of professionals:
👨⚕️ A doctor with a stethoscope
👩🏫 A teacher with a lanyard
👨⚖️ A judge’s wig
🧑⚕️ A surgeon in scrubs
They’re all down there, debating, advising, deciding, but I’m above them, arms folded, because I did the work.
I knew what was coming.
I claimed the legal right to keep standing tall for Leo.
I didn’t wait until I was left outside the room.
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🧭 What You Can Do Right Now:
📞 Call Mencap or another support organisation
🧠 Read up on Deputyship and LPA options under the Mental Capacity Act
📝 Start gathering evidence (school reports, medical records, benefit letters)
🖨️ Download and complete the Court of Protection forms
💬 Talk to your GP and SENCO — you’ll need their backing
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✋ Don’t Wait
I say this with all the love and urgency I can muster:
You cannot afford to wait.
If your child is 15, you should already be moving.
If they’re 16, you’re in a narrow window.
If they’re 17 or over, you need to apply now.
Because while the rest of the world gets to clock off at 5pm, we don’t.
And our kids can’t afford for us to be silent, or powerless, when the big decisions come.
❤️
Leo Isn’t a Mistake. CRISPR Is Not the Fix.
Leo Isn’t a Mistake. CRISPR Is Not the Fix.
There’s a quiet horror that comes with reading headlines like:
“Scientists explore using CRISPR to remove Down syndrome postnatally.”
To some, it probably sounds like progress.
To me, as a mother to a child with Down syndrome, it feels like a punch in the gut.
Because the message isn’t subtle. It’s loud and clear:
“Your child shouldn’t exist.”
“This is a flaw we’re trying to fix.”
And let me tell you something:
Leo is not a flaw.
Leo is not broken.
Leo is not a mistake.
What is broken is a society that still measures people’s worth by how easy they are to raise, how closely they conform to a “norm,” or how efficiently they can be scanned, sorted, and erased.
Yes, I’ve been told to my face, in the street, by a complete stranger and in front of Leo:
“Did you find out too late to get rid of it?”
Yes, I’ve had people look at me with pity and say:
“Oh… is he your only one? I suppose that put you off having any more?”
And yes, I’ve seen those same kinds of people look stunned when Leo is wearing a school uniform,
as if he’s not entitled to an education.
Or when he picks up an iPad, reprograms the router, and outsmarts a full grown adult on their own device, before they’ve finished their tea.
Leo is sharp. He’s witty.He’s proud of who he is!
He’s clever with tech in a way most people wish they were.
And still, science is pouring time and money into figuring out how to erase people like him.
Let’s also confront this brutal truth:
Down syndrome is the only condition in the UK for which abortion is legally allowed up until birth.
Not 24 weeks.
Not third trimester.
Right up until the first contraction.
And what happens then? A 39-week baby, because that’s what it is, is quietly discarded.
I can’t even bring myself to imagine how.
Meanwhile, people with Down syndrome are living full, rich, brilliant lives.
Some drive cars.
Some are actors.
Some are professors, musicians, speakers, athletes, politicians, and work in pretty much every profession you can think of.
And many, like Leo, are smashing expectations laid down by professionals who clearly don’t know what they’re talking about, and who rely on outdated research from medical journals and textbooks of generations gone by.
I’m tired of the lazy assumption that children with Down syndrome are just sweet, harmless little mascots.
Yes, Leo brings joy.
But he also brings challenge, grit, defiance, and a determination that would make a Navy SEAL sweat.
I didn’t know Leo had Down syndrome until he was three days old.
He arrived two months early, tiny, poorly, but determined, and it took a while before anyone realised he had an extra chromosome.
But here’s the part that most people don’t know:
Only around 5% of conceptions involving Down syndrome survive to birth.
Let that sink in.
From the very first few cell divisions, most embryos are lost naturally or through selective termination.
So the fact that Leo is here, not just surviving, but thriving, is extraordinary in itself.
He’s beaten odds most people never even realise exist.
He is not here by accident.
He’s here because he fought for it.
And because I did too.
Two life-saving operations at birth.
Then he survived full open-heart surgery.
Then various illnesses and medically induced comas.
Then Covid.
He has fought for every inch of the life he has, and he earned his place in this world.
No gene editing tool, however precise, will ever convince me that he needs to be changed.
I don’t want “normal.”
I don’t want “corrected.”
I want Leo EXACTLY as he is.
And if the scientific community is truly invested in progress, it should start by learning how to value difference, instead of deleting it.
If you’re reading this and you’re shocked, good.
You should be.
Because behind every statistic is a child like Leo.
A person.
A life.
And none of them deserve to be seen as a problem that needs fixing.