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.

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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.

 

Growing Pains

Last night on ‘The A Word’, Joe was upset about his carer having to leave and he reacted badly in his school classroom by having a tantrum and ‘flinging a few chairs about in the classroom’ and his parents were called into see the Headteacher. They then had a debate about how much Joe actually understood and felt but his Mum made a remark that I have often heard and said myself : Joe’s behaviour might be sweet now, but when he is older, what then? When he is not cute anymore and no-one can handle him when he is 16 and still flinging chairs to express himself, what then?

That is a  very real reflection as our children grow up into adulthood; Their little quirks or coping  stategies are not so tolerable. Joshua always bounced up and down as a young child, he was never still, and that was one of the things that made him stand out from his peers. I can remember in a special needs playgroups when Joshua was a toddler, we all sat around in a circle singing action songs, with Joshua bouncing continually. I had thought he was happy but the leader had called me aside at the end of the session, to tell me that his behaviour ‘was not right’ and it indicated to her that he had a problem. Given that he was in a special needs playgroup, that seemed to me , then and now, an odd thing to say, even though I am sure she had our best interests at heart.

But we frequently said, that he could get away with bouncing as a toddler and even at primary school, but we were fearful of having an adolescent, or even adult, son who jumped up and down in public places. Then it would not just be seen as exuberant behaviour, then it would be regarded as being anti-social and no longer ‘cute’ enthusiasm.

Fortunately for us, Joshua does not have behaviour problems and is not normally destructive – other than when he had a reaction to one anti epileptic drug that he was given and that was a frightening insight into the world that many parents face with a chid who is violent and aggressive. Fortunately it was so alien to Joshua’s placid character that we were able to identify the source of the violence and remove the drug quickly and the problem went away, but I am aware that not every parent is that fortunate.

But equally Joshua’s open affection to strangers, by grabbing them for a hug or for attention, might well have been sweet when he was a toddler, but now that he is a 5’10” teenager,  it is more probematic. Most strangers recognise Joshua’s intention to be friendly, but not all and some look genuinely horrified as he approaches. Although I am concerned by ‘stranger danger’, I am not prepared to lose that affectionate side of his personality and to tell him off for that behaviour. I tend to make  a joke of it and say ‘Put her down Joshua, not everybody wants a hug!’ as my standard response, but it is a challenge to know how that might develop as he becomes an adult.