Tuesday, 26 March 2013
Samuel, 22q11 and the holiday
We've just got back from a long weekend with the children - we booked a caravan through The Sun newspaper down in Devon. You can read my review of Park Holiday's Waterside park here.
I wanted to blog about the holiday from Samuel's perspective, just to give a little insight into the challenges we are faced with on a regular basis. For the majority of people going on holiday means planning, packing and travelling before the actual holiday begins. Then the aftermath of travelling home, the unpacking and the piles of washing.
A holiday for us is much the same, but we do have a few added issues to address along the way.
Firstly, the big question: When do we tell Samuel we are going on holiday?
The best idea is to not tell him at all. For an easy life it would be best to wait until the morning of travel before we tell Samuel we are going away, however, he is 10 years old and not blind or stupid. He can see the suitcases, he listens into conversations and understands most of what is being said, and actually, given that he is 10 years old I would like him to experience some excitement and to have things to look forward to. In reality we do tell Samuel that we are planning a holiday - and this is where the fun begins.
Once Samuel is aware of an impending trip the cogs in his brain start to churn and he bombards us with questions. He has little sense of time and therefore thinks that the holiday is the next day, if I try to explain that we are going on holiday in the summer holiday, he will still ask if this is next week. Samuel will also question every detail of the holiday, where we are staying, who is going, how long we will be away, where will we eat, where will he sleep. Even if I answer all of the questions he will ask me again, maybe not that day, but the next day, or the week after.
As the holiday approaches Samuel's excitement leads to obsession. He will wake at silly o'clock through the night to ask if it's time to go, even though we still have a week before we leave. The night before we go he is always difficult to settle (although he is difficult most nights at going to bed), the difference when we are going away is that he will wake extremely early, dressed and ready to go.
On the morning we were due to leave this time he woke at 5.00 am. He dressed himself without being asked and was hypo by 7.00 am. I spent the next 2 hours trying to keep him calm, otherwise the journey would have been a nightmare.
In fairness he wasn't too bad this time, although he did keep asking his questions throughout the drive. The weather was quite bad and the news on the radio was reporting of localised flooding. This concerned Samuel and he then became worried that we would get stuck in flood water.
Samuel also obsesses about food and much of the journey he kept asking when we would be having lunch, and if we would be eating dinner out. The questions about lunch and dinner continued throughout the holiday.
When we arrived at the caravan site Samuel was quite wound up and needed constant calming. He kept asking if we were going to our caravan, but we had a short wait as we had arrived too early to check in, so decided to take the children for some lunch while we waited. This was difficult for Samuel. He didn't want to wait, he was so keen to see our caravan that as a result he hardly ate his lunch.
Once we got into our caravan he was calmer, but then an accident involving Oliver injuring himself upset Samuel again. Oliver fell out of the caravan after opening the front door and getting caught by the wind, he hurt his nose to the extent that we thought he had broken it, so a trip to A&E was necessary. Samuel burst into tears and was inconsolable for a while. We needed to put our shoes and coats on to take Oliver to A&E but I was still trying to coax a very upset Samuel out of the bedroom. He did calm down after I spoke to him gently, and I managed to persuade him to get ready and get in the car to take Oliver to A&E.
Samuel's behaviour was exceptional on the way to the hospital, although he was very worried about his brother. Whilst at the hospital he was quiet and subdued, but as soon as we received the good news that Oliver was going to be fine and hadn't broken his nose, he cheered up. He was clearly relieved and kept hugging Gary and I saying how glad he was that Oliver was ok.
Bedtime was actually not too bad. Samuel now has medication to take at night and I will blog about this separately soon. He did stay up slightly later than his bedtime, but fell asleep almost immediately and did not wake in the night, he did wake up early each morning though.
Whilst out and about we had to take the usual precautions with Samuel, ensuring that he walks close to me when crossing roads or in car parks, as he gets easily distracted and wouldn't think twice about stepping out onto a road without looking. He also needs constant stimulation and if he gets bored his behaviour can start to dwindle.
The main part of the holiday went relatively well, but as we reached the end of the holiday Samuel's behaviour dipped and the usual arguments between Gary and Samuel began. When Samuel knows something is about to come to an end he seems reluctant to engage in any meaningful activities and tends to slump and become totally disinterested. He was also slinking back into laziness and it was more difficult to get him ready to go out near the end of our break.
Our journey home was manageable, and I think that was party due to the fact that the kids all fell asleep - and I even nodded a little in the car on the way home.
Of course, he was not keen on getting back into routine when we got back, and bedtime was difficult and as for getting him up for school this morning.....the usual drama!