Holiday Blog

I haven’t blogged all summer, so this is a bit of a general roundup of what we have been up to.

Tenby

A drunken bunch of Welsh people in wonderful shirts and dresses, very pissed, dancing outside a pub opposite where we were having a drink on the way to pick up a curry on our first night in Tenby (we love Tenby!). One of them, a jolly looking chap with a very big tummy and a gorgeous flowery shirt staggered/danced up and down the street. Ava-Jane was fascinated and watched their every move. Then she turned to me and demanded “dance!” and pointed towards the revellers. They’re the fun people, take me there. Fo and Otto were like “oh nooo, don’t” – I hesitated a moment but AJ made it very clear she would not take no for an answer, she would be taken to the dance! 

And they were so lovely. They all immediately connected with her and Ava-Jane was the centre of attention. Someone gave her a pair of sunglasses and they all bopped to a ravey version of “Jolene”. One of the ladies in a gorgeous dress was celebrating her birthday and they were having a ball.

Ava-Jane does like a holiday and she loves the bustle of a place like Tenby.

Ava-Jane is becoming more wilful generally. For someone who is essentially non-verbal she is very good at getting her point across and she is increasingly able to make the point that she is not happy about whatever the situation might be, like any good teenager. For example, this evening she was programmed to go to bed while Otto and Ashley were going out. The truth be told, they were not going to do anything more glamorous than buying Otto a toothbrush from Tescos but Ava-Jane felt excluded and she made it very clear that she was not happy about this whatsoever. We did eventually get her to bed but I had to rig up her iPad so she could watch Strictly… Strictly is Ava-Jane’s safe space. She had a bit of a meltdown at the beach today so we pushed her back up the hill, back to the house, home for a bit of Strictly. She is having a sensory overload, loving it, but it knackers her out. 

The only truly good weather we have seen was for 2.5 hours exactly during the 2.5 hours it took England to beat Spain in the European Cup final, so we were locked up inside… but it was worth it!

Ava-Jane goes around greeting people as we wander the streets of Tenby, and whether it’s the Welsh character or because people are on holiday, the people seem to love being greeted by her.

She has a natural charisma and draws people in. 

Today we went to Folly Farm – an amusement park come zoo that was a lot more amusing and zoological than it had any right to be, hidden away in a Pembrokeshire backwater. We met a girl at the giraffe area who was studying giraffes at all hours of the day and who shared some nighttime giraffe footage. It turns out that these graceful, otherworldly, beasts go at it, hammer and tongs, by night. Not in a sexual way, I hasten to add; they basically try to knock seven shits out of each other, swinging their heads via their famously long necks in what looks like, nothing less than an outsized game of conkers.  

Ava-Jane did not witness this violence and loved getting up close and intimate with the giraffes. Ava-Jane can sign giraffe – she basically flings her arm in the air in a vague imitation of a giraffe’s neck. This does look very like her sign for elephant where she flings her arm in the air in a vague imitation of an elephant’s trunk. But as we had primed her that we were going to be seeing giraffes, “giraffes” was definitely what she was signing. There was a wheelchair accessible walkway (yay, oh yay!) to a viewing platform, where Ava-Jane could watch a giraffe munching on a bunch of leaves.

Ava-Jane’s wheelchair height often doesn’t really quite work on many occasions. Here she was just at the height of the thick top of the fence, which meant she couldn’t see a lot of the animals very easily. 

Even the most able-bodied amongst us spend a lot of our time at these kinds of animal reserves straining and craning our necks to maybe glimpse a solitary ear of a creature described on the information board in both English and Welsh as “shy and nocturnal”. Unsurprisingly, this shy and nocturnal beast isn’t making much of a showing mid-afternoon for a bunch of noisy holidaymakers even if one of them is in a wheelchair and has quite restricted viewing. 

So Ava-Jane didn’t get to see the dhole – the Asian hunting dog, but she did see lions and most importantly she did really get to see a giraffe up close. 

(Side note: But the dhole came to my assistance in a hard fought game of Scrabble, where I could turn HOLE into DHOLE to access a triple word square, where, somewhat ironically, I played DODO – the dhole is fast going the way of the dodo with its natural blah it at in Asia becoming depleted, surviving only in small outposts in places like Pembrokeshire.)

We reviewed the day as I put her to bed – it’s good to review the day with her to get her brain making associations – and we had lots of rooaaaar, for the lions, and lots of flinging her arm in the air, for the giraffes, but then she kept on going on about “hoo”… I didn’t know what that was and I still don’t. To successfully communicate with AJ, you basically need to know what she is talking about, or signing about, so when she throws you a curveball and talks (signs) about something unexpected, it can be somewhat discombobulating for you and frustrating for her. 

Ava-Jane isn’t very good at communication strategies, like any good Brit abroad, if you don’t understand her the first time, she will just repeat herself again and again and ever more loudly. But however many times she told me “hoo”, I didn’t know what she was going on about. More’s the pity for me, I am sure it would have been fun, whatever it was. 

She is a whole bunch of fun, my girl. Hanging out with her on holiday is ideal. The best of times with Ava-Jane is when time really is not of the essence. Fo, AJ, and I went for a walk yesterday. Fo peeled off and AJ and I kept going. We kept walking along the beach, I was barefoot, so we turned back, not because there was any time constraint but because there was a narrower band of pebbles for me to cross barefoot. 

Likewise, this morning AJ and I went shopping for a picnic lunch and we came back with a picnic lunch and some pastels de nata for breakfast and some meringues for whenever. Ava-Jane and I are not efficient shoppers. 

So, yes, if you have time to spare, investing it in spending time with AJ is a good investment. And you do need to invest time in her – she takes a little longer to react than other people. She loves saying hello to people but quite often she’ll only get round to saying hello to those lovely people who said hello to her a while ago and are long gone by the time she gets round to saying hello back. But what those lovely people don’t realise, because they are long gone, is that she kept saying hello to them well beyond them going. 

Godmother Amber came for a visit and took AJ for a properly long walk. We even met up with Laura from work and family on the beach. 

Ava-Jane away

Ava-Jane went off for her week away at the Oundle Mencap holiday. This is a great experience for her and she seems to have a most excellent time. It’s run by a bunch of enthusiastic young adults who seem to enjoy themselves immensely and as AJ is a bit of an old stager, she has become something of a star there and is greeted with much glee. Ava-Jane likes glee! 

When she is on her holiday, we really notice how Ava-Jane is the glue to the family. The week she is away, Fo, Otto and I sort of drift past each other, like ships in the night, without AJ to stick us together. I mean, it’s great but different.

Stemming from this, Fo and I have been discussing needing a shared hobby. While AJ is around, she is basically our shared hobby. But we might need something new if and when she moves on to different pastures. What do ageing couples take up when the kids have flown the nest? Ballroom dancing? Bridge???

Malaga

After a number of years holidaying at various points on the British coastline – Wales, Norfolk and even a lightning visit to Cornwall, I put my foot down and insisted that we go to the Mediterranean. Tenby is lovely and all but we have been three times and have had a least some drizzle each time and only on one day was it really warm enough to get AJ into the sea. Fo found us an adapted apartment along the coast from Málaga.

We hadn’t been abroad with her since before Covid and getting her on a plane was more of a challenge as she is bigger. Planes are really not set up for people in wheelchairs. Airports are pretty good and there’s lots of assistance to get you to the plane but then there’s the tricky bit of getting you from your wheelchair into your seat on the actual plane. They’ve got piddly little wheelchairs that fit down the aisles but no hoist to get you into these or out of them again. And, in any case, they don’t have any side bars, so Ava-Jane just flops out of the side. She has got a complicated harness that keeps her upright in her seat but you need to negotiate with the stewards and fellow passengers to allow you to rig it up. Inexplicably the EasyJet rulings for all of this going from Luton to Málaga were entirely different to the EasyJet rulings for all of this going from Málaga to Luton, so on the way back there was a bit of a brouhaha as our fellow passengers were moved around the plane to accommodate us. Luckily Otto rose to the challenge, picked his sister up, and carried her to her seat. Good chap!

There’s not an awful lot to report on about the holiday itself. We sat by the pool, sat on the beach, read books, ate a lot and drank a lot, which is just what we were after. We were accompanied by Fo’s sister Cags and family and our dear friends Tom, Sophie, and Pip from my time in Madrid came to see us so we had lots of great company for the eating and drinking. 

Fortunately I don’t pay enough for my WordPress blog to be able to post videos on this blog, which means I can’t post the video of my trying to paddle board standing up after a very boozy lunch. It probably doesn’t need saying but my recommendations would be not make your first attempt at paddle boarding after a very boozy lunch, fully clothed, while being filmed by nieces with access to TikTok. 

New diagnosis klaxon!

I am currently away on the return leg of a bit of a schlep of a trip starting in Lima, with a 16-hour lay over in Mexico City before a 10-hour flight to London. It has been a fairly full on trip and I had to give presentations that I was a little nervous about, so Fo held off from telling me about Ava-Jane’s latest diagnosis – Lennox–Gastaut syndrome… I mean how many syndromes can one person have? Fo told me not to Google it, so obviously I Googled it. Readers, don’t Google it! In summary, it’s complex, it’s rare, and it’s severe.

Truth be told, we knew that already. It’s not like we thought she had the common cold. Ava-Jane doesn’t generally do things the easy way. I feel a long way away from her and really quite fancy a hug. 

So expect to see some medical blog posts as we navigate this next stage. I think it’s going to involve implants and CBD (don’t mind if I do!). And I will probably have to mention politics, because blimey!