Day 9 of Holidays

Joshua does not get to choose much for himself in his life : I decide what he will eat for his meals, where he will go and what he will wear for instance. I try to give him choices between two alternatives but more often than not, I make decisions for him. But yesterday morning we went out on a walk together and I let him determine what we did. My husband had cycled to a vintage car show  and we left the dogs at home,so there was just the two of us to please.

We stepped out of the gate and Joshua could choose whether to go right , up the hill to the high street or left, downhill towards the beach? He chose the easier option of downhill so off we went, me holding on tight as it was steep and he was almost running down.  Joshua selected a left turn at the bottom of the hill and we headed towards the pier, I had planned to go to the regatta to see what was going on on the seafront, but Joshua had other ideas: he dragged me onto the pier. Once inside I let go of his hand and let him lead the way; he wove through the various slot machines and computer games, halting briefly by the ten pin bowling to watch the familiar sounds – he goes bowling with school. But then he headed onwards again to the cafe where we ate tea last week and he went to sit down at the same table, but unfortunately it was occupied and I intervened, and moved him along by one table. He crossed his legs as if to say he was staying, so I ordered myself a mug of tea and him a bowl of chips and an orange juice, which came quickly and he tucked in.

He decided when he had had enough and took off back towards the amusements. I could see that it was now pouring so I was in no hurry to move him on. He hovered by a baseball game where for 50 pence, you got 45 seconds of throwing two basketballs into a hoop. So I found a pound coin and he enjoyed two games. At first, he wanted to throw the ball outwards, towards the amusements but he soon learned that the game was to aim at the basket and he even got a few in the target. He was enjoying the game so much, that I changed a £5 note and he had another ten games!. It was so lovely to find something that he was enjoying and focused on and something that he had chosen, that we had a great time.

After the money was gone, he wandered towards the exit but saw the rain and changed his mind. Instead he turned around and he went into the bar where we had stopped for a drink the other night – he may have been looking for his Dad. But I bought us an orange juice between us and we sat by the window looking out at the sea. He had a few sips but was not really interested in the drink, so we left and we walked back up the hill to the house. He stopped just once when we were almost back, but I was able to persuade him that we were almost home. Once back, he curled up on the settee and we were both satisfied with our morning’s entertainment. I was thrilled that he had made his own choices and played on the pier amusements, like other teenagers do.

Day 3 of Holidays

After our long drive here, I like to have a day when we do not get back in the car, but we walk around and yesterday was that day. It was drizzling on my early dog walk but it was still warm, and once the rain stopped, the day got hotter and hotter. Joshua obliged beautifully by enjoying another late lie in, which enabled me to cut the grass. It was always the first thing that Mum did as soon as she arrived, she would unpack the car and would get the lawnmower out, so it was making me uncomfortable knowing that I had left it for a full day! It looked so much better once the grass was cut as it hoovered up the fallen twigs too, so it looked cared for again. Joshua woke up only once the work was done, which is a good trick.

The highlight of the day only came in the evening, when we had taken a walk down to the pier as he enjoys the noise, lights and young people at the amusements there. Again, it is the first time for years that he has walked there, rather than us taking the wheelchair and once the beach and pier were in sight, he raced there, pulling us along in his enthusiasm to get there. He loved walking through the slot machines and I even found two 2 pence coins in my purse, which we wrecklessly  blew on the penny falls machine, winning 6 pence, which of course we ploughed back into the machine, but we had fun in the process. We walked along the wooden pier where our appetites were awakened by the tasty smells of a cafe there, so we did a detour for egg and chips for tea, which were surprisingly tasty.

Joshua got restless while his Dad was still eating, so I took him down to the end of the pier where he spotted the dodgems with three kids bumping away. He was fascinated and pulled to get into a bumper car too. I explained that we would go and get Dad and he was unimpressed as we walked back to the cafe to fetch him. It was quite an operation getting both of their long legs into the dodgem but they managed it and I paid the £2 fee and off they whizzed. They went round and round, with Joshua beaming all the way around. He had known what he wanted and by the look on his face, it had lived up to his expectations. They spun round and round the track on their own, thankfully nobody else was there as he might not have appreciated being banged, and he was grinning all of the time. It was such fun to see him enjoy a ride like that with his Dad, as usually he rejects anything in a fairground. But mainly I loved how adamant he was over what he wanted to do, our passive, compliant son has been replaced by a walking, determined teenager who is able to make choices and stick to them, until he gets his way. It is about time!

Dance like nobody is watching

While we were on our short break last weekend, I was on the deck of the ferry while my husband was watching the England Word Cup match. I sat on the warm deck to read my book, feeling as though I was on a cruise! I heard some excited shouting from the deck above me and when I looked up, I saw a young man with Downs Syndrome. He was having a brilliant time being buffeted by the wind, he was leaning into the breeze and pretending to be blown away by it. I sat watching him for ages, he was so happy and absorbed in his windy game and he had no inhibitions at all about the noise that he was generating, but I enjoyed the happy sounds.

His father was close by, but not too near so as to cramp his son’s style. I admired that approach and it reflects how I tend to be with Joshua too – he needs his independence and to have what he finds fun, even if it is not the traditional view of what teenagers typically do. I try to stand back when Joshua is dancing or exploring in public, he cannot be left totally alone due to his seizure activity and his lack of sense of danger, but I do tend to keep at a safe distance, so that he can feel safe but also gain some sense of independence, no matter how small. I have now found peace with other people’s staring or reaction to Joshua bouncing in front of a busker or waving at strangers in a cafe. If it makes him happy and does not harm anyone, in fact those two things actually benefit others, then carry on Joshua and fill your boots, I say!

As we get older, typically we worry more about what others think of us and our behaviour, as a result, becomes more inhibited and less natural. This boy on the deck was loving the sensory experience of leaning into the gusty wind, he was having fun and not caring what anyone else thought of him. I think that he had the right idea and I wish many more of us would feel free enough to ‘dance as though nobody is watching’ as I was able to share his joy, just by watching him.