Fun Times - When sensory seekers grow up

When Andrew was much younger, it quickly became clear that he sits firmly at the sensory-seeking end of the spectrum. Loud music, flashing lights, fresh air, and hard textures were his comfort zone — not soft fluffiness or quiet corners. So we embraced it. His bedroom sparkled with disco lights, the lounge glowed with a bubble tube, and our ears adjusted to a symphony of noisy toys. I’m fairly sure he owns every VTech Toot-Toot car ever made — including two ‘Go Go’ cars from the USA and a German-singing forklift truck. Soft play was a regular fixture, and trampolining became a weekly ritual 

But small boys grow into bigger ones. And meeting their sensory needs becomes a more ambitious endeavour. Andrew, it turns out, is now an adrenaline junkie. 😎

These days, holidays are planned around theme parks and thrill-based activities. Last year, thanks to a Family Fund grant that allowed us to purchase a Merlin Pass, we camped near the Thames and pre-booked two visits to Thorpe Park and one to Legoland. By sheer luck, our second Thorpe Park trip coincided with the public launch of its newest hypercoaster, Hyperia. We showed Andrew’s disability pass to a staff member and were ushered into the accessibility queue - bypassing hundreds who’d been waiting since opening. Andrew? He loved every second. I think he ticked off every ride in the park that day.

So why am I writing this now? Because we’ve just returned from this year’s thrill-seeking adventure: ZipWorld in North Wales. We tackled the ziplines at Penrhyn Quarry (Titan 2) and Llechwedd (Velocity), and I can’t praise the staff enough. They were welcoming, thoughtful, and absolutely committed to making sure Andrew had the best possible experience. 

Of course, we may be making a rod for our own backs. As Andrew grows older and taller, his sensory appetite grows too. Meanwhile, we’re getting older - and theme park rides take a little longer to recover from. I hope we’ll stay fit and adventurous for many years yet, so we can keep sharing these experiences with him. But Andrew will outlive us, and one day we’ll need to find carers who are not only willing, but excited to take him on these kinds of outings.

Because for Andrew, sensory joy isn’t just a preference - it’s a lifeline.

Oh my goodness, the blog is still live!

Well that was a little surprise - I thought about blogging or vlogging about Andrew's transition to adulthood and it's taken a few weeks to remember the name of the original blog - and it's still live (and my password still works!) But it's been almost ten years so where to start?

Andrew is still autistic. Still deaf. Still a double-spectrum child. But his diagnosis is now PMLD - profound and multiple learning disabilities - alongside autism and deafness. And he's just turned sixteen. Where have the years gone? (I blame Covid for stealing more than one year!)

I obviously need to catch you all up. So posts going forwards will be a mix of news and reflections from the last ten years, and updates on our progress towards adulthood. Things like navigating the move from DLA to PIP, does he need credits-only ESA, what about the annual learning disability health checks, accessing his Child Trust Fund, why do HMRC and DWP both need to know that he's staying in school ...

One thing I have learned during the last ten years is that, to successfully parent a child with special educational needs, you have to be very good at life admin.