Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
A Trip to the Beach
We’ve recently returned from a family holiday. It felt so special that it was just us, no carers or enablers, just us, with grandma along for extra fun and another pair of hands. The trouble is, the very thing that makes it feel so precious (no one but family) can make it exhausting as well; no respite or night care for seven whole days and nights.
We stayed in the UK as we are too scared to travel abroad due to seizures and unpredictable behaviour (one day we would love to). We were near beautiful beaches and had a week of almost wall to wall sunshine. What a treat.
We went to the beach every day, but not for long each time. It’s hard to explain how challenging it is for us to go to a beach. It should be so simple, you turn up, lay out a ‘camp’, adults sit, watch the kids, kids dig and then you all paddle / swim.
By the end of the week we’d managed to get our beach routine and technique perfected.
Our little girl, Taz (not her real name) who is nine and almost as fast as a whippet, requires athletic supervision on the beach. By this I mean running. There was a team of four of us looking after her; me, my husband, my mum and our older daughter. The typical routine, which lasted about an hour to two hours maximum each day, went something like this:
1. Arrive at beac
2. Remove Taz from her buggy
3. Fastest runner (husband) chases after Taz who has immediately bolted across the beach at high speed. A key part of this role involves apologising to the families whose sand sculptures she has blasted through and whose ‘camps’ she has destroyed. Responses vary.
4. Remaining three in the party hoick the beach tent, buggy, buckets spades etc. about 20 metres on to the beach (no more as getting off the beach is a challenge).
5. Work begins to catch Taz and change her into beach wear (normally including a wetsuit as she likes to swim in the sea but hates the cold). Compliance varies depending on mood.
6. We all quickly change while one person continues running after Taz who has resumed her sprinting.
7. Catch up with and fit a life jacket type thing to Taz.
8. Head into sea – team Taz all plunge into the cold water super-fast so we are ready to receive her as we bring her in. She enters water and clings on to chosen adult, climbing up them and digging nails (that are overdue a trim) into their neck while she acclimatises.
9. Taz acclimatises. Is delighted.
10. Team Taz are cold, need to exit water. A wetsuit clad Taz is less keen and wants to keep ‘swiminin’.
11. Cold, salty rigamarole trying to encourage exit to beach.
12. Taz exits sea. Runs.
13. Few more laps of the beach. More sandcastles narrowly avoided.
14. Taz sits and digs for 6 minutes (we grab a quick photo). Taz runs again.
15. Time to go. Taz runs.
16. Team Taz drag all the stuff off beach while designated chaser attempts to kettle Taz in the right direction by sideways dancing around her with arms spread reminiscent of herding sheep.
17. Taz allows herself to be lifted into her buggy.
18. We ascend extreme hill.
19. Repeat x 7 days.
Beach trips are extremely hard for us but the look on Taz’s face as she tears freely around the sand, and the joy on both girls faces as they swim in the sea together makes the extra exertion worth it.
This time last year Taz was going through an awful time with her epilepsy which saw her hospitalised six times with seizures. Just one moment of recognising how well she is doing right now is enough to keep me running.
I need a spa break now though.
