Shop Rage

I wrote recently about how demanding Joshua was when I had visitors who took my attention off him for a short while, but yesterday during our weekly visit to Tesco, Joshua pushed his behaviour further. He had been excited to get his boots on and go out and had shouted ‘thank you’ when we got to the supermarket, as he usually enjoys these shopping trips. We had pushed a trolley in from the car park but almost as soon as we were through the entrance, he began to misbehave.  As we negotiated the trolley down the busy fruit and vegetable aisle, he was pulling it against the direction we were going and I was anxious that he was going to crash into someone. We were only on that first aisle when he kicked me with his big boots, right on my ankle bone and made me wince with pain. By the second aisle he was smacking me hard on the chest, so that I had a red mark  and it stung. I stopped the trolley and told him firmly to stop hurting me, but he smiled his cheeky smile as though it was all a fun game, and gave me a big hug as though to apologise. So we continued on with our shopping list, which was longer than usual, so that might have been the problem.

He continued to misbehave and to smack me as we moved through the store, so much so that I was very grateful to get to the checkout and I vowed not to bring him for a while as it had proved to be both painful and very hard work He sat nicely on the seats at the ends of the till while I unpacked the trolley and re-packed my bags. For a moment I thought how much I was looking forward to next respite weekend without him and then I immediately felt bad for thinking that way, as I know I will miss him. Just before I was finished bag packing and before I had paid, he jumped up from the seats, started to come towards me, then decided it would be more fun to run away, towards the exit. So I put down my shopping and dashed after him, bringing him back to our till, where the kind lady behind me was loading my remaining shopping into my trolley. She explained that she was the daughter in law of our neighbour and she could see that I had my hands full that morning. I was quick to tell her that he was not always this bad, that he usually enjoyed our weekend shopping trips, and she kindly replied that ‘we all have bad days’, so it did not feel as though she was judging either of us.

A meek, helpful Joshua helped me to push the full trolley outside to the car and he obliged beautifully getting into his seat and waiting while I loaded the bags into the boot.We both had a quiet sit and contemplation, before I drove us home again. Once home, I took Joshua’s boots off and he went into his den for some quiet time, while I unpacked the shopping. He resorted to his relaxation which was to enjoy his music DVD and I resorted to mine, so I went into the garden to pick some apples and blackberries, and I set about making a crumble to reset my equilibrium.

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Shopping Trip

Now that Joshua is walking everywhere, he is able to express where he does and does not want to go, which is more challenging for sure. He has never been keen on looking round shops, though a quick visit to Tesco is always a fun part of our Saturday routine. Yesterday afternoon, my husband announced that he wanted to go to a mobile phone shop and my heart sank, as I knew it was not Joshua’s kind of outing. He was dozing on the settee when we were ready to leave, so that did not bode well and he nodded off again in the car en route, so he was certainly sleepy.

He woke when we arrived and was happy enough to walk between us, hand in hand. There was a comfortable settee for him to sit on in the mobile phone shop, but he only stayed there for a minute or so, he began to try to distract the staff who were talking to us – flashing his bare stomach, holding his hand over my mouth to stop me from talking and finally kicking my shins. So I relented and agreed to walk him around the pedestrianised town centre, leaving my husband behind. Joshua strode out happily, seeming to know where he wanted to go and then he dragged me into a Costa! There was a large queue and service seemed to be slow, so I sat him down at a table for four and took my place in he queue, where I watched him like a hawk. He sat beuatifully for about 2 minutes, sitting up tall, waving at people and smiling but then he was bored…

He spotted me in the queue so he rushed over to hug me and I told him to go and sit back down. To my surprise, he walked back towards our chosen table, but got distracted en route and began to stroke a lady’s hair in the adjacent table. I rushed over , apologised and sat him down again and took my place once more. He got up almost immediately and this time spotted a young girl’s ponytail and made a beeline for it, so I ran and caught him and brought him to a table next to the queue and I opened the orange juice that I had selected for him, hoping that would encourage him to sit still. By this time he had quite an audience and one customer helpfully told me that he was fed up of waiting and I agreed ‘we all are!’

Eventually I got to the front of the queue and placed my order of two teas and a slice of chocolate cake.  A man who’s job it was to clear tables, kindly offered to bring my order over on a tray, while I settled Joshua down for the millionth time. Once we were seated together,and aided by a chunk of cake, Joshua sat well and tucked in and I savoured my tea and got my breath back from all the chasing. During all of this time, my husband was still in the phone shop sorting paperwork. Once Joshua had eaten his cake and drained his juice, he stood up, ready to leave so that was my cue to drink up and get moving, as the chase was on again!

We found my husband still in the phone shop and he was ready to browse in other shops, while Joshua and I on the other hand, had had enough and were ready to head home. While I love the independent, mobile Joshua, I have to admit that shopping with him safely contained in his wheelchair was a much more relaxing shopping trip. He now votes very much with his feet and his big, black NHS boots.

Supermarket Sweep

Last Sunday I had missed my supermarket -shopping companion when Joshua was in respite but today, to make up for that, I took him to Tesco twice! The first time we had gone along with our shopping list as usual and as it was a sunny day, I had dressed him in his new cargo shorts from Tesco and I had admired how smart he looked in them. It is only when I followed him to the car, that I saw that they still had the security tag on the waist band! So on the way into the store, we had queued at the Customer Service desk to prove that we had bought, rather than stolen, them and to ask them to remove it for us. Sadly there was a queue and Joshua was eager to begin his trolley shop, so it made him frustrated in the queue and he began to kick my shins to move me on. When we finally got to the desk,  the staff explained that the tag could not be removed unless he was not wearing the shorts so I would need to bring them back another time. So now I was frustrated too as I had wasted our time.

Joshua did not really recover from that false start and he was hard work to control around the shop – kicking me and the trolley, running away, touching fellow shoppers and then lying down on the floor of the cereal aisle – he felt pretty sheepish after that, and jumped up quickly. He sat on the seating provided at the end of the till while I packed and paid for the two bags of shopping and helped me to push the trolley back to the car. A till supervisor let me know that Joshua had a security tag on his shorts and that he would set the alarm off. I was shattered by the time I got home to unpack the shopping and began to make lunch.

I decided to go back to Tesco, close to closing time, so that they might remember us and the shorts, which they did immediately and they removed the security tag, quickly. We had a couple more things to buy, so we whizzed around the store in top speed and Joshua sat beautifully while I paid. This time he had not had enough and so as we moved to leave, he sat on another bench and waved at customers as they left the shop. He mostly got a wave back and that made him happy and we were almost the last customers to leave the shop at 4 pm.

As a reward for better behaviour, on the way home, we took the dogs in the park for a run around. I  let Joshua choose which direction to walk in, he was in charge , as so often he is dragged around, but yesterday it did not matter that we walked in circles.  He loved running freely and throwing sticks for the dogs, then we headed home. My Tesco visit last weekend might have been more leisurely, but it was not as much fun either – apart from the shin kicks – and having my shopping mate with me, is the norm, thankfully, not the other way around.

Lazy Sunday Afternoon

After a busy time last week, with hospital visiting, travelling and two mornings at his new respite provision, Joshua and I were both ready for a quiet, lazy day yesterday to re-charge our batteries. My husband was recovering from jet lag too, so we were a sleepy family yesterday. I made a birthday cake for a friend and we took it around and sang yesterday morning, while she opened her parcels, so that was a fun morning. On the way home, we stopped off at Aldi for our Sunday supermarket shop as I knew he would not want to go out again once he got home. It was more challenging than Tesco as the aisles were tighter and the smaller store was fuller, so I had to control the trolley more than I usually do or else we would have been involved in several collisions. As usual I am not allowed any browsing time, so rash choices were made and thrown into the trolley as we breezed up and down the aisles at speed. The main issue was the long queue to pay and the lack of seating near the tills, which Joshua really missed, so he had to stay with me in the queue, which was challenging but we managed it. While packing my bag, I had to be one-handed as the other was keeping Joshua from dashing out of the automatic doors into the busy car park, so I felt rather like a juggler. We managed and he happily pushed the trolley back to the car for unloading.

Once home, he wanted to kick off his big boots and relax in den on his settee and watch Robbie Williams. He dozed on and off all afternoon, but ate all of his lunch which was surprising after the large slice of chocolate birthday cake that he had already tucked away that morning.  He did not wish to go anywhere else all day and fortunately, we had no further plans ,so he could get his own way pretty much.

He has a day with Yorkshire Grandma today which he will enjoy. Last week with her he voted with his feet : he refused to get out of the car when she took him to the lake to feed the ducks, it was clearly not what he wanted to do that day. She had not had a refusal really before and she sent me a text to tell me that he would not get out of the car. I  replied to tell her that it was not what he wanted to do then and to try another activity and he had no hesitation in getting out of the car when she pulled up outside one of his favourite cafes. I love that he is expressing an opinion and making choices these days, the days of the passive, compliant Joshua seem to be behind us now. While it can be more difficult to entertain him, at least now we now know what he is happy to do.

He will have another longer day at his new adult respite provision on Tuesday, so that we can build on last week’s success and hopefully he will be less shy with them this week as he builds up his confidence. Then from Thursday, we have some family time off together for the long Easter weekend and we will have a few days away together, before he heads back to school for the Summer term, unbelievably. It is a short term , so he will soon be on May half term holidays and then they slide towards the long summer off, in a blink. Then Joshua’s last year of school looms before us and having resolved the respite problem now, we need to build ourselves up to  some visits to local daycare providers… There is yet more transition on the horizon!

Voting with his feet

Yesterday Joshua used his feet to communicate very effectively on several different occasions: It began at 7.30 when he used his feet to get out of bed and come downstairs to find breakfast and some attention, which was a positive and independent way of communicating what he wanted. It was successful too, within minutes of arriving downstairs, he had a bowl of steaming porridge in front of him. After eating, he tucked his feet up on the settee in his Den and dozed in front of the Show, as it was still too early for a  weekend wake-up.

Joshua next used his feet to plant himself on the bathroom floor, refusing to get into the shower as he voted for a bath instead. But as the plug was broken, he had no choice and we manhandled him into the shower cubicle, which is never as bad as he expects. But he emerged, clean but grumpy to have been overruled. Once dressed, Joshua was ready to go out and so he stood at the front door. kicking at it, expressing his readiness to leave. We obliged and were all soon in the car on our way to our nearest market town. However, shopping was not the outing that Joshua had in mind and he again made his feelings very clear, by stamping loudly on the footplate of his wheelchair. It was already floppy when we assembled the chair, so it seems as though he had perhaps been protesting this same way last week at school. I pushed him around this way through the market and passed some shops, asking him to stop and also crossing his leg across the other but he was soon stamping again.

He only stopped stamping when he was doing activities that he approved of : he stopped to eat fish and  chips and he enjoyed the drink that we had in a pub before we turned for home, so eating and drinking were acceptable, while shopping was intolerable. We took the dogs for a short walk before we came home and we asked Joshua to use his feet to walk,, rather than riding in his wheelchair. He strode out enthusiastically at first but soone began to flag, and he made as if to sit down on the muddy grass, again using his feet to protest. But I used distraction to encourage him to continue, by passing him a stick to throw for Ruby and Kevin. It worked and he forgot about sitting down and enjoyed the dog game. When our puppy barked bravely at oncoming dogs, Joshua made a loud belly-laugh, finding the noise to be hilarious and it enabled him to keep going for the rest of the walk.

When we got home, Joshua sat on the settee and held his feet out and undid the velcro straps on his boots, indicating that he was ready to take his big boots off again and to replace them with his slipper socks, and of course I obliged by helping him to get comfortable. Joshua’s feet were very expressive all day long, but he has to realise that some of his behaviour is wrong. He cannot just stamp to get his own way, but needs to learn that there is a more effective way. His boots are large.heavy and loud, but finding a better way to protest would make me proud. Perhaps next time we will start with food, so that then he will shop in a better mood.

Shop til you Drop

I read on social media that yesterday was ‘Purple Tuesday’, when shops on the high street would be ‘autism and dementia friendly’ – there would be an hour  during the day when these types of customers would be made particularly welcome, like the autism friendly cinema screenings that I have seen advertised too, but we have never participated in. But I have a few issues about Purple Tuesday :

  • It was not well advertised or promoted, so how many shops participated and how many families were aware of this ‘golden hour’ for their Christmas shopping, presumably? I certainly fell over it in the evening, when it was too late, so hard did retailers try to promote this service that they were offering. I still do not know when the magical hour was, but presumably it was when Joshua’s peers who might have benefitted, were at school.
  •  How much shopping can realistically be achieved in an hour, when you have dementia or autism? I have seen both conditions at close quarters and both can become preoccupied with a very small detail and get stuck in a loop, so much so that it can take an hour just to get over a threshold. Does this really exist as an hour a year for shopping in a quiet, helpful environment? Surely if they are serious about helping,and it is more than just a retail gimmick, it needs to be offered as a weekly or monthly hour, to gather some momentum.
  • I understand that for some on the autistic spectrum and for certain dementia suffereres, the busy-ness and noise of shops is simply too overwhelming and that they cannot cope with more than five minutes in that environment. For them,and their carers, this would be an appealing concept perhaps. But this idea also makes me uncomfortable if I am honest : here is your hour for shopping, now stay away from the shops the rest of the time, as we gave you an hour. It could also be interpreted as a patronising attempt at segregation and you know that I feel stronly about inclusion.I want Joshua to be part of the real world, it is good for him to mix with ‘normal’ people and it is good for them to encounter him too, so I do not like the principle of offering a Disability Retail Hour for our situation. Joshua hates shopping, not due to the crowds and noise I don’t think – he loves people – but he just finds it boring and if I am honest, I dislike shopping too, so thank goodness for online shopping!
  • If I assume that the founders of Purple Tuesday’s motives were purely to support the needs of sufferers of dementia and autism, then I applaude their initiative and perhaps it will grow in popularity as more people become aware of it. But I hope that the staff in participating stores were given training in how to support customers with dementia or autism , as to be done properly, it would need to offer more than just  a less busy retail environment.

I will watch out for more such initiatives, but for us, this did not represent a solution to encourage Joshua to spend more time shopping. He has his own funds and if there is something that he wants or needs, then he will get it. But I will usually make an online purchase for him. A special disability hour is not magically going to make Joshua into an independent shopper.