We haven’t been in Kansas any more for a long time, Toto. Some people call this place Holland, but that makes me feel a bit sad for the Dutch. As you most likely know, Boo, our gorgeous, cheeky, two-year-old, is our second child, but in so many ways, we are starting from scratch bringing him up. I remember being bamboozled the first time I put a nappy on his sister (back to front, of course). But Boo has seen me having to measure precisely the most absurdly fractional doses of meds, learn words like hypoxia and periventricular leukomalacia (and know what they mean), turn into an amateur physio and twice (please never again) administer oxygen.
It all seems very run-of-the-mill now (not the oxygen, mind you). But we are always finding new things to learn and challenges to overcome.
Holidaying SEN style is the latest in a long line of firsts for us. You see, up till now, we’ve mostly gotten away with it. Boo was pre-toddler age this time last year and no one expected him to do much other than be pushed about in a buggy. But now his buggy is an adapted one (a funky, if a bit industrial looking wheelchair by another name). He can’t sit in highchairs, access beaches easily, will wave and say hiya but won’t engage in toddler chat with other kids and grown-ups and we can’t manhandle the Bug over steps.
Accessibility has become critical to us all. This was the first holiday when we realised certain (in fact many) places and activities had to be off the agenda. That said we had lots of fun and did lots of things, some of which I hope to blog about soon. But for now, here are some of the many things I learned about SEN holidaying and which will certainly have a bearing on our arrangements for next year.
1. Of course, being me, I had a mad panic and made about 15 lists and spent a long day packing for all eventualities before we went away. What I have realised is that holidaying in this country where there are things called shops and where we can speak the language, the only things we couldn’t forget were Boo’s meds (inhalers and anti-seizure meds) and his DLA (Disability Living Allowance) letter to prove he wasn’t: a) big for his age; b) lazy; c) or that we weren’t tightfisted people trying to get into tourist attractions more cheaply by getting me in as his carer.
2. Plan, plan, plan. Don’t spent 3 months packing next year, woman, but do plan every big day out well by looking at the web and making calls if necessary to check access arrangements about parking, lifts etc. The day we turned up at Bodmin Jail on a rare non-planned day out and saw the no disabled access/no buggies sign was not a good one.
3. Accept that even when you plan, you can’t foresee everything. Like, for example, the fact that the disabled parking spaces in Polkerris are as narrow as a shoe box if nearer the village than many non-blue-badge spaces. My back still hasn’t forgiven me for that one
4. Don’t lose you sense of humour. The numerous ‘disabled must pay’ signs in Cornish car parks really annoyed me. I mean really annoyed me. I have no objection to paying for parking but the wording was appalling. Note to self: lighten up.
5. For the love of God, don’t forget battery back ups. The AC adaptor that plugs in Boo’s white noise machine (and without which he can’t sleep) got broken on our way down to Cornwall. Emergency bedtime dashes to about to close shops are stressful.
6. Don’t expect anyone to get a good night’s sleep or wake up in the same bed they tried to fall asleep in while away.
7. Teething nappies (see 6. above) and Lycra garments are sworn enemies. One evening I used 5 Ariel liquitabs and two rounds of vanish to end poo-gate. I am still traumatised by the experience.
8. Don’t fight it. I admit we spent little bits of the holiday trying to stick two fingers up to the limits Boo’s CP and buggy reliance put on him and us all. We sometimes just tried to do the kinds of things we would have done before he came along. Don’t get me wrong. I am all for full inclusion and access and I don’t accept that anything is off limits for him. He can and I will help him do anything he wants to do (within reason). But the timing and context has to be right. There’s just no sense trying to get down to the remotest parts of Heligan. He can see tropical plants and use rope bridges at other places, like The Eden Project, where he did both of those things. Remember, when he is enjoying himself we’re all enjoying ourselves.
9. That said, a holiday has to be for all of us, and that includes Boo’s fabulous big sister. She takes a lot of persuading to leave her brother to do anything, but she deserves to swim out to jetties in the sea and go crabbing and rock climbing. She’s an adventurous 6-year-old. Tag teaming it isn’t just OK. It’s essential.
10. Cut yourself done slack. I know. Those words are actually coming out on my computer screen. The temptation is to spend family time on holiday as therapy time (no appointments or normal life to get in the way). But holidaying with a child with physical disabilities and little of your regular kit (no standing frame, no walker, no seating system, for example) is hard enough work without trying to meet all your therapy goals. We just had the buggy with us (with an amazing Godsend of a tray we bought for it), his GoTo seat and his Upsee. We couldn’t have done anything without these things, but couldn’t do everything we normally do even with them all. And we took the opportunity to see new experiences for Boo and a change of scene as a kind of therapy. They were for me anyway.
So next year I will be better prepared, although I am sure there will be new challenges to meet too. The biggest will be finding accessible accommodation and some form of safe sleeping for giant Boo, who sure as heck won’t be in a travel cot then. And I’ll be sure to take more Vanish. Lots. More. Vanish.
Do you have any tips for SEN holidaying? I’d love to hear them.