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.

Fun and Games

Joshua was allowed a lie in yesterday morning as we did not need to be at his wheelchair assessment until 10.30, so I left him in bed until 9 am. When I did wake him, he did not seem to appreciate that he had enjoyed an extra 90 minutes asleep and he was still slow to come round and to eat his Weetabix in bed. So we had a tussle to pull the duvet from his tight grasp as he giggled at his teenager game. He was happy in the car listening to loud music with his two favourite songs on repeat with the windows down , that was until he spotted McDonalds golden arches up ahead of him. When I drove past, it was 10,15 I told him, he began protesting – kicking the car and trying to escape his seat belt. So of course I made him a promise that I would take him there after our appointment, if he was good, by which time it would be nearer lunchtime.

We arrived at the wheelchair assessment centre, where there were just 4 disabled parking spaces which were all full. The rest of the street was double yellow lines and so I tucked my car into a disused entrance opposite and hoped for the best. Joshua walked with me into the wheelchair centre happily and sat down but the receptionist told me that I could get a parking ticket where I had left my car and as a space had come free by then, he offered to take care of Joshua while I moved my car. So I went outside and when I returned two minutes later, Joshua was standing at the back of reception kicking the door to the toilets, with a panicked receptionist looking hopefully at me. I explained that he was not good at waiting these days. So I then took over trying to distract him with the water fountain, writing on some forms and my phone, but nothing held his attention for very long.

Thankfully we were called into the assessment room, where two Occupational Therapists and the sales representative from a wheelchair manufacturer were waiting for us. Joshua sat down for a couple of seconds while he surveyed the scene, picking out the things that he wanted to fiddle with such as an OT’s pony tail, her glasses, her computer keyboard  and a stool on wheels. It was like an Aladdin’s den to him but I tried my best to answer their questions while pulling him away from anything that he could potentially break – I needed to be an octopus to keep up with him, while focusing on lap-straps, brakes, the size of wheels etc. I dreamt of the old days when in hospital appointments when he used to lay his head on my shoulder or lap, and go to sleep, blocking out the conversation about him. But those sleepy days have well and truly gone and now I need to be a juggler and a multi-tasker.

After 30 minutes of these fun and games, we were finished and Joshua meekly held onto his current wheelchair and helped me push it to the car. He settled in the front seat while I manhandled it into the boot. It is both awkward and heavy, but the rep gave me no reassurance that his new chair will be any lighter or neater, as it needs to be tough enough to resist his new stamping on the footplate habit. As promised I drove back to school via Donalds, where he was sweetness and light : waving at everyone and thanking me for taking him to one of his favourite destinations. So when I delivered him to school at midday, I warned them that he might not eat his packed lunch. he gave his teaching assistant a big bear hug, as he was clearly pleased to see her, and then he ran to his classroom to get settled on the settee, hardly even looking up as I left to head to work, even though I felt as though I had done a day’s work already. His school diary says that he was sleepy all day, so maybe he felt the same.

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.

The Incredible Hulk

Joshua was in an unusually bad mood yesterday but he was livelier than he had been all week. He started off happily enough, coming downstairs around 8 am with a smile on his face and his usual hug for me and he ate his Weetabix happily enough. As soon as he was dressed, he began kicking at the gate to go out, so I decided to take him to the office with me, as I needed to send myself an email that I would need later. As we drove passed Tesco, he began to kick the car, cross that I was not turning in for our normal Saturday morning jaunt. So after we had done my quick job at work, I decided to treat him to pick up a few bits and pieces at Tesco, and that made him happier, though we ran round and were in and out in 5 minutes.

While we were out my husband had packed up the car as we were heading away overnight, so I transferred Joshua into the front seat of our truck, which we use when we are transporting 5 dogs, and I went indoors to find coats and do a final check that we had everything. When I came back outside, he was kicking the car, inpatient to get going. So I transferred him from the front seat into the back, where he could do less damage, and we set off. During the journey, there was still some kicking and banging on my head rest, but he dozed off eventually too. Not that he deserved it, we stopped at Donalds for an early lunch and while he was happy to go in, he did not eat everything and he decided that he had had enough and tried to stand up and leave while we were still finishing our lunch.

We arrived at our cottage and he explored, then had a lie down on the settee – it is exhausting protesting all of the time. Unfortunately, it was not long before we were due out again, so he was not impressed when I tried to put his splints and boots back on. We met friends at a cafe and sat outside as the sun had come out, but we were sitting on picnic benches which had no back support so he was not very comfortable. We bought him a slice of cake to cheer him up but he refused to eat it at first and would only drink his orange juice. He kept smacking both me and his Dad during that cafe experience, hard enough to sting, and his eyes were blazing, I joked that he looked like The Incredible Hulk. He threw a china cup onto the ground, where it shattered, in protest. We wanted to look around the 1940’s weekend display , but he was less keen – stamping on his wheelchair footplate or pulling away and kicking when he was walking. Clearly Joshua was not impressed by our choice of weekend entertainment!

We took him back to the cottage, where he lay on his bed for a while – having timeout with the Live8 show – and that seemed to do the trick, his eyes were less angry when we were ready to go out again, for a pub tea this time for a friend’s birthday. I was expecting more of the same behaviour, and went armed with his ipad, but he behaved really well sitting between his parents and he ate , and enjoyed, all of his meal. He was back to normal, smiling and waving at everyone in the pub and enjoying Shrek as a distraction from the boring conversation. Afterwards we took the dogs a walk and he walked much, much further than I expected him to be able to manage, and with a big smile on his face. We got home at 10 ish and he slid willingingly into bed. I am just hoping that my smiling son wakes up today and not his alter-ego, The Incredible Hulk!

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.

Check Up

Joshua had a check up at the dentist yesterday before school and he was badly behaved in the waiting room : he refused to sit and wait, but was trying to get into the surgeries where all the action was. He kept pulling my glasses off and throwing them across the room. I took him to the toilet with me to pass the time  ,as unusually we were early, but as soon as we were inside the disabled cubicle, he began to kick first the metal heater which made a great sound of vibration and then the wooden door. So he was being quite a thug. When we returned to the waiting room I found us a seat around the corner from other patients, and I hooked my arm inside his and I sang to him to settle him down and made him laugh by blowing raspberries. Soon enough we were called through to the  special needs dentist, who knows him pretty well.

I was surprised that he cooperated enough to lie in the dentists chair and I held his hand down and she was able to see his teeth and gums. While we have been brushing with an electric brush, it is still hit and miss as to how thorough we can be as he will only tolerate it in his mouth for so long. She said that while his teeth had improved, his gums still looked sore and that he should also have his gums cleaned with a softer brush. She demonstrated and made his poor gums bleed, but he tolerated the procedure. He messed about again at reception as I made an appointment for another check up in three months time.

The dentist is not far from school so I delivered him there in about 5 minutes and he lead me to the stairs that lead to 6th form, there was no doubt that he knew where he was going. He rushed into his classroom making a grand entrance , shouting “I like you” and hugging his TA. He was clearly happy to be there and both pupils and staff seemed pleased to see him too, which I loved. I put his belongings in his locker and said goodbye, but he was busy squeezing his TA so perhaps did not hear me. When he realised that I was going, he chased after me to see “Bye Bye” and give me a hug too.

As I drove back to work, I followed a car with a bumper sticker on saying ‘ My child has autism’ on it and some smaller print beneath it that I needed to get closer to read. I was intrigued as to why you might want to tell other drivers that your child had autism and wondered if it was because the driver or child might show irratic behaviour perhaps. At a junction I got close enough to read the smaller text which said ” My child has autism – Questions are welcome but parenting advice is not!”, which I have never seen before. So this driver must have been bombarded with well-intentioned advice and had finally had enough. But I am not sure how welcome questions about autism might really be as you are struggling perhaps to encourage your anxious child back into your car!

I thought back to Joshua’s behaviour in the dentist waiting room and how nobody had made any comment, the odd stare perhaps, and a few sympathetic looks, but I am struggling now to think of a time when I have been given unwanted parenting advice. Perhaps that is because children with autism can look more ‘normal’ than Joshua – sorry I hate to use the word normal – and so they can simply appear to be naughty. But Joshua with his splints and built up boots perhaps looks as though he has special needs and certainly his learning difficulties are clear once he speaks, so that is perhaps I have been spared that advice and instead I have frequently received the head on one side, sympathetic smile, the pat on the arm or am told ‘well done’, all of which drive me mad but I have learnt to smile graciously,even though I am inwardly snarling.

Playing away

Joshua is not at home and I slept last night for almost 7 hours, which is pretty rare these days.I waved him off yesterday morning, with his overnight bag, and I told him that I will see him on Monday. I am pretty sure that he will not understand what that means but his respite stays are usually three nights long, so I am hoping that once he arrived there, he will settle into the weekend routine. I called last night and he was happy , but had grabbed a few naps and had rejected the meal that they had prepared and chose instead to eat 6 fish fingers and a slice of chocolate cake,  which doesn’t sound very balanced but it does sound delicious.

He had also shown some “cheeky” behaviour, which had involved trying to lift the female staff’s tops up! I had had to ask what ‘cheeky’ meant and it was an interesting choice of word. She told me that she was being diplomatic, but I replied that he was not being cheeky, rather he was inappropriate. They had started by trying to ignore him , as we had agreed, but he thought it was a game so was spoken to firmly about it.

This behaviour makes me sad : I want the staff there to like him, to want to be with him, and if he is behaving inappropriately then there is a risk that they will not. When he has smacked my arm, I have pleaded with him not to hurt the people who care for him. I have always been relieved that Joshua is popular and can win hearts with his hugs and twinkly eyed grin. I love that he is known for being cheeky, affectionate and smiley; I would hate for that impression of him to change to someone who has to be ‘managed’ and disciplined. So I am hopeful that last night was a one -off ,  that he was just ‘trying it on’ for his first night away and that today he will settle down. This is his penultimate weekend stay and so I would like this and the next one to go well, without incident, but to just be full of fun.

Behave yourself

I had some advice yesterday on how to handle Joshua’s behaviour, since he has started to smack my arm or kick out, typically when he is objecting to something or if he is craving attention I think. I had a telephone conversation with the Children’s learning Disability Team before Christmas and I was invited along to hear some ‘pointers’ on how best to handle this change in his behaviour. We are all agreed that he is trying to communicate something and he needs to be shown a more socially acceptable means of saying what he wants to say. when you are virtually non-verbal and do not sign, you have limited resources at your disposal to communicate with and objecting with a hit to the arm, might seem an obvious one.

Most of the strategies that the two learning Disability nurses showed me, were already in place with school, where I have already had a couple of meetings to discuss this change. I had been tolerating his smacking and kicking until it moved beyond just me, to include teaching assistants at school and Yorkshire Grandma on one occasion that I was working away. The nurses were full of praise for what I had been trying and for the support that school had shown us. They too suggested visual support to help Joshua to process what was happening ‘now’ and ‘next’ and equipped me with some pictures of things that we might do at home. I have said before, Joshua is all about the here and now and so I am not sure how he will handle the concept of ‘next’ but we will certainly be trying it out both at home and at school.

They also gave me a presentation on my reactions to his behaviour and I explained that wherever possible, I walk away from him once he has smacked me, to deliberately remove my attention. More often than not, he is delighted to see me back again after the ‘timeout’ and we can start dressing or undressing again, for example., without any more incidents. The nurses suggested that an egg timer could be introduced to show him the length of time that I will be gone for. Again, I can give that a try but I am really not sure if he understands the concept of passing time, but let’s see. It will at least ensure that I am consistent in how long I stay away for if I am timing it.  The timeout is not for him to think about what he has done particularly, as you are taught when they are tantruming toddlers, but more to show him that his response does not result in any attention, so it is not worth repeating.

They produced a star reward chart too, that he gets something he loves, like his guitar or Donald’s, after he has earned five good behaviour stars. I am not convinced that this is the best way forward with Joshua, as I doubt that he would grasp the reward concept and my priority is to get him to communicate in a more appropriate way, rather than getting him to conform necessarily. But I appreciate their thoughts on how best to tackle this stage in Joshua’s development. The timing seems right to intervene while it is at a low level and hopefully we can redirect him in time for him moving onto adult daycare, away from his ‘safe’ school environment where he is known and he is popular. A new respite or daycare provision will not have that history on him, to know that he did not always communicate with little kicks or smacks, and I am determined that he does not start off there, wherever there might be, on the wrong foot.

Pay Attention

Joshua employs a range of strategies to gain attention, some of them are positive and some are more negative, but his intention is still pretty clear. He expects to be the main focus at home, and to be fair he usually is, and he is starting to feel the same way at school too. He has used hand gestures for some time: even at primary school he gave his peers rough high 5s and I had to teach him to tone it down, for the sake of the smaller children, and we deveoped a ‘zoob’ which only involved a mini high 5 with just one finger and that lasted for a while. The trouble is that I am sure he enjoys the smack noise and the burn on his hand after the gesture, so I have been unable to wean him off it permanently.

Joshua has been through stages of waving and more recently, at pointing at someone to catch their eye, across a room for instance he would pick someone out. Last week  he began to adopt a proper wave again. As he pulled out of the drive in his taxi, he gave me a royal wave rather like the Queen. He also has a new hand gesture, when he turns his hand out, palm up, as though he is saying ‘ta-dah’, which I love. When I took him into school last week, he stood at reception as though he was a meeter and greeter, beaming at the pupils as they arrived at school. He seemed to be saying ‘welcome…Look at me!’ So it seems that we have raised a show off.

However he has more negative gestures too, perhaps when that attention-seeking is not rewarded with a response. His favourite at the moment seems to be a kick to the ankles. It is not a painful kick, not overly aggressive, but he is saying ‘Oiiii’ with it and it is insistent too, accompanied with a twinkle in his eye. I have been on the receiving end of several kicks lately and I read in his diary that he has employed the same technique on staff at school too.

So now we need to work out how to teach him to communicate in a more socially acceptable way and to realise that he cannot be the centre of attention in every situation and at all times. This promises to be an interesting journey…


Whirling Dervish

Joshua woke up yesterday full of mischief and his cheekiness carried on all day, right up until bedtime when unusually, it took  four attempts to get him to stay in bed. He was awake too early, before 7am, but that should have made him tired and subdued, not this whirling dervish that I had all day. He was so restless at home that I took him to the supermarket at 8.30, as he loves to push a trolley normally and that wears him out. While he pushed the trolley down the aisles, whenever we turned round to come back towards the doors, he abandoned the trolley and made a run for the doors, at high speed. He normally sits on the seats while I pack the shopping bags, but yesterday again set off at high speed, causing me to take off after him and abandon my shopping. He was giggling like mad when I caught up with him and brought him back, so he knew exactly what he was doing.

I wanted to visit a friend who has been unwell and she was working in her shop yesterday, so we paid her a visit. He immediately began to behave the same in her shop – throwing cushions off the settee, pulling clothes off hangers and heading for the stairs. Needless to say, we did not stay long in her boutique, just long enough to deliver a home made sweet treat and a hug.

We were en route to meet my sister at Donalds, and I had hoped that might calm him as he was very excited to get there and very excited to see his Aunt, he gave her a lot of cuddles, but then would grab at her glasses sayng ‘No Glasses!’ as he did it. We had to sit either side of him to wedge him into the bench seat and then he kept blocking his head in front of my sister’s ,so that we could not easily see each other! He refused to eat his burger, throwing some of it, but he was thirsty and drank more than usual. We only met for around an hour as I was not keen to drag him round any shops, as had been the original plan, in this mood, so we headed home again as, at least in the car, he has to sit still and the air conditioining kept us cool.  he did still manage to throw the remainder of his ornage juice all over me and the car, making us both sticky!

He rampaged around the house when we got back, sweeping and posing in front of the hall mirror with the telephone were his most constructive behaviours. Joshua enjoyed all of his evening meal and we had an early bath too. But he was not interested in lying on his bed watching ‘Lion King’ as he kept coming downstairs while I  was making my own meal.

I am not sure what triggered this busy behaviour but I have two theories :

  1. The heat made him uncomfortable and unable to relax
  2. I was home alone as my husband has gone to London to see friends and a concert,  so this was a request for attention as, Joshua was not going to be ignored yesterday.

I am enjoying the peace now while he is still asleep and I am wondering if we will have a repeat performance today, in which case I will be going back to work in the morning for a rest.