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.

The Silent Treatment

When your child is virtually non-verbal then you have to play detective in order to work out what he is trying to communicate, but yesterday Joshua made his feelings pretty clear. I had booked him a haircut at 4.30 as he has thick, unruly hair, like both of his parents, and it was getting too long and getting in his eyes.  In the past, haircutting has been very traumatic and  it took three of us to hold him still for the stylist to access his locks. But over the years, the same hairdresser has worked with us to gain his trust and confidence and that hard work is really paying off now.

So I decided from school that it was better not to go home first as Joshua likes to kick off his boots and relax when he gets in, so it would have been a struggle to get him out again after just 30 minutes at home. So instead I drove to his favourite ‘Donalds from school to buy him the treat before his hair-ordeal, warning him en route what would be happening later. As we approached the fast food restaurant, he began grinning and pointing, he knew exactly what was about to happen. Although he was slightly put off that we were not going inside, but that we used the Drive in facility but he enjoyed his fish finger Happy Meal in the car. He devoured it hungrily and it certainly made him happy.

We arrived in our home town at 4.20 so walked slowly to the salon, as Joshua scowled as we drove past the end of our lane and headed into town instead. He restlessly paced around the salon in his cape while he waited for his hairdresser to finish with her previous client, but fortunately Joshua is very vain and so being surrounded by mirrors kept him amused. As she approached with first clippers and then scissors, he sat well, clutching the salon telephone in his good hand and with his head bowed. It was only when she reached his fringe that I needed to assist by holding his head up and a colleague held his hand, to prevent him from swiping her scissored hand away.

Once completed Joshua ran his hands through his new haircut, admired himself in the miorror, whipped off his cape and began  sweeping up the hair on the floor. He even uttered a quiet ” thank you”. This calm teenager was a million miles away from the screaming little boy who had to be thrown out of a barber shop with half a style and who we had to use clippers on at home , sitting on my knee on a kitchen chair in the utility room. Joshua made small objections last night but nothing extreme and so the years of patient perseverence have really paid off and I am eternally grateful. She sprayed him with after-shave as he was leaving so he smelt and looked gorgeous and there was real relief all round.

Stepping Out

Joshua is communicating in a variety of ways lately and one is with his large feet; he has big feet anyway, same as his dad’s, but then he has NHS splints and built up black leather boots on top of them so they are even larger. They are actually not as heavy as they look but even so Joshua has bulky feet and he votes with them, often.

As soon as Joshua comes home from school, he sits on the settee and sticks his feet out ready to get his boots and splints off. They must be horrid to wear all day, particularly in the summer when the plastic splints must sweat. But his boots are useful for communicating with too: I wrote last week that we heard his door kicking during a meeting in school last week but he also used the same  approach to tell me that he was ready to go out on saturday morning, with an insistent and determined kick to our front door, once he was dressed and ready. I was told off last Tuesday when his meal was not ready on time, he came into the kitchen to inspect proress with cooking, then gave me a couple of kicks to the ankles to express his disapointment, as it was not the service that he receives when yorkshire Grandma meets him from school! If he does not want to walk somewhere, then he plants his feet solidly on the ground and somehow manages not to be moveable, that is a very effective objection too.

Joshua also uses his feet as a tool for entertainment, by sticking a foot out at the last minute to trip you up as you walk past him. That is a deliberate and hilarious joke for Joshua, as he loves some slap stick humour.He does it subtly so that at first you do not realise that he is tripping you up, you think that it is your fault, so he is sneaky with it. Joshua’s feet are also part of his bedtime routine too : after his bath,he will sit on the side of his bed in his pyjamas and hold his feet out one by one. I massage moisturiser into them and give him a foot rub and do his leg stretches, to loosen his tight hamstrings. He relaxes during this process and his eyes go dreamy, so it is a great precursor to bed.

So Joshua’s feet play an important role in his life and he uses them in many different ways. I am going to try to get him some chiropody so that we take better care of them too, although I am not sure how he would respond to that, we will see……

I Your’s

Mostly last week while away together, Joshua said ‘I like you’ as his favourite phrase and it was hard to get him to say much else, although we did have occasional mentions of ‘Joshie’. But when we got home and I was removing his bulky boots, he said my favourite phrase of his : he stared into my eyes and he uttered ” I yours” and my heart swelled, ‘ Oh yes I agreed, you are mine’ and I gave him a big squeeze and I have not heard him say it again since, so it was deliberate choice to say that then, and not random repitition. I have taken it to mean that he knows where and to whom he belongs and that is very special, in a world where we are really not sure what precisely he knows and understands.

We have always maintained that he understands so much more than he can express and he demonstrates that, daily. He had taken to going to the back of the kitchen door and pulling at his apron hanging on a hook there, to indicate that he is hungry as he wears that at mealtimes. He holds his feet out, on demand, to have his socks put on in the morning and to have his boots removed when he comes home from school. I had warned him that it was back to school yesterday, his first full day there for over two weeks, and he raced outside to board the taxi on coming downstairs, without  a backward glance.

So he undertstands much of what we mean but I do not understand all of what is going on in his head. He will have been delighted to see everyone at school again, but instead of positivity in his home/school diary, I read with sadness that he had “hit and kicked two members of staff today”, so something was not right with my gentle giant. I am not sure how to respond to that news : do I apologise? try to explain the inexplicable? Make excuses for him? I am really not sure. I would normally say that he hits out – and he does smack me occasionally – to gain attention, but the diary says that this was not the case. I love to read that he is happy at school but this diary entry suggests that all was not right yesterday and I am trying to second-guess what he was trying to communicate in this behaviour. I am hoping that it was a one -off and that he moves back to his high-5s or hugs or onto something else next, as he knows that hitting and kicking is not acceptable.

A People Person

I am always really touched when total strangers show an interest in Joshua and his story and two did yesterday : I was working in London yesterday afternoon and I met a new client, we had communicated by email before and had spoken on the telephone but had never met. We met in a cafe , for my project briefing, and I learned quite a lot about her life and her family situation through facts that she volunteered as well as due to questions that I asked. She is a french lady , who married an Englishman, and they have a grown up daughter who now lives and works in London. We both are professional market researchers and so we are both expert at asking questions to find out key information and soon she was asking me too about my family situation…

I told her about Joshua, she already knew about his epilepsy as I had had to move a telephone call once when I had to dash to his rescue, but she expertly found out about his medical history and how that impacts on his daily life. She was skilled as I found myself opening up to her and she did the same to me; telling me how she might be looking for a career change and how her daughter had asked to finish her education in the UK, when she was just 15 and she left her parents living in France while she came here to study. It is a key skill to appear to be interested , without seeming to be too nosey, and that is something that after 25+ years of asking questions professionally, that we both had in common.

But after our work we shared a taxi to the station, she jumped out en route to head off a different direction and I carried on to Kings Cross. So the taxi driver and I began chatting, generally at first about navigating around and driving in London. I explained that I knew the walk from Kings Cross to Great Ormond Street well from all of the appointments with Joshua. He was also  a proficient poser of questions and he asked about his surgery and whether or not it had been successful. We had quite a chat on the way to the station and as I alighted, he wished my son all the very best in the future.

I was made emotional by this stranger’s interest and kindness. I will never see him again but he took some time out of his day to find out more about our lives and he actually listened too – many people ask because they feel that they should, but they do not really listen to the response . It struck me, for the first time, that taxi drivers and market researchers have something in common, they are both people businesses and you probably have to like people in order to be good at the job. While he can be a decent driver without chatting to his customers, and some people might prefer that, I cannot do my job well without liking people and wanting to find out more from them.

Manners maketh Man

Joshua used a key phrase all weekend, which I loved everytime he said it : he kept saying “Thank you!”. He used it regularly in context when I gave him something and so it felt as though:

  • He was being super-polite, which I always love
  • He appreciated, at some level, what I was doing for him rather than taking it all for granted
  • It was some form of conversation exchange – he would thank me and I would reply ” You’re welcome!” and he would beam and giggle
  • It felt so much more meaningful than some of his other phrases like ” no glasses” or  ” no pants”!

I kept trying to video him saying ‘Thank You’ so that I would have a record to share with others and also, to have a record to keep for myself in case this week was a one off and he reverts to something different next week.

I love to hear his voice, to be honest, whatever he says but this is special. Joshua talked before his epilepsy took hold : he said his first spontaneous sentence in the car and I had to pull over to celebrate it, when a little voice from the back seat said ” I like dolphins!” I spun around and told him that I loved dolphins too. I also remember the first time he spoke to another child : we had rushed lunch to get to a local ‘Mother & Toddler’ group and as we got out of the car I saw his orange ‘spaghetti smile’ and commented on it to him. As we entered the village hall, Joshua sought out his friend, Molly, and ran up to her and said ” Look at my face!” and of course I cried and cried with pride.

Then the demon epilepsy took his voice away, he became mute for years and gradually he has acquired some language back and his vocabulary has expanded over the last 18 months . I talk a lot and so I worried endlessly when he lost his vocal ability as to me, communication is key and he did not have the manual dexterity to manage sign language. Even when he was mute,however, Joshua was always able to make himself understood somehow, but this phase of talking makes me very happy, as he can express his personality so much more easily through language, rather than just pointing to what he wanted.

Given that Joshua had language, then lost it and has now clawed some back, I never take for granted that he will always have this skill : I try to enjoy it while it is here and to record it for posterity, as it is often hard to remember what he was like. I have a video of an excited 3 year old Joshua bouncing and skipping around the deck of a ferry on the desktop of my laptop and for the entire video of two minutes, he is talking constantly and I watch it every week, to remind myself of what young Joshua was like and what he was capable of. 17 year old Joshua does not yet have that level of language, but he is adding more vocabulary everyday or so it seems. Onwards and upwards my son!

Speak my Language

I recognised how far that we had come in terms of relating to young people with disabilities , when we were out for lunch last week in a garden centre. Both my husband and I noticed a young man with an Ability Dog – a gorgeous chocolate labrador called Sheriff. It was not clear what the young man’s disabilitiy was but he sat down at the table  close to us, waiting for the rest of his family to order and collect their food from the counter. I kept catching the dog’s eye and he only had to look at you and burst into a happy tail-wag. They made a happy, companionable scene together.

After we had eaten our lunch, my husband went up to their table to say hello to Sheriff and the family and he was asking about this Ability dog, both the yong man and his Mum answered the questions and I too went to have a chat afterwards, then we introduced Joshua to Sheriff. Now probably the dog gave him confidence, but 15 years ago, my husband would not have approached this family. When we first looked around Special Schools ten years ago, My husband was very uncomfortable around children with special needs, he did not know how to react and the experience upset him too. But now here he is having an unecessary conversation with an autistic teenager, he high-5s and dances with Joshua’s peers at his Special School disco and he has read stories to a class mate of Joshua’s, while he sat on his knee when they came to our house once. He has certainly come a long way, probably due to experience over the years.I was always more comfortable with children with disabilities but was wary of teenagers and young people, as I did not know how to be. In fact when I first volunteered at school, I confessed this discomfort to the Head, so she threw me in at the deep end and assigned me to a class of seniors who were 16+ and I learned how to adapt.

It is always interesting to me that the people who engage with Joshua when we are out and about, usually admit to having some link with disability – a sister with cerebral palsy, a brother with Downs , teaching in a special school or prehaps working with adults with learning disabilities. Those who do not have that connection, possibly find it more awkward to know how to respond and stay away. From my perspective, if you met Joshua in the streeet and wanted to engage him, these are tips that I would give you :

  • Eye contact and a smile is key, these are Joshua’s visual clues that you want to engage. Then see if he responds, he almost definitely will, as he is scanning most of the time for someone to engage with. It is helpful if you are on his level if he is in his wheelchair as eye contact is essential so that he knows you are addressing him
  • Speak to him directly – there is no need to ask my permission – he will either acknowledge you or not, if he is not in the mood
  • Speak clearly, do not confuse him with too many words and actually allow him the time to process what you are saying and process his response. Too many people are uncomfortable, so talk too quickly and they hate silence, so they fill it with their own words Joshua needs more time than most to process and to formulate his reply
  • Laughter and humour is a big part of Joshua’s communication, so he would love to feel like he was in on the joke or a tease
  • Joshua might repeat what you have said, while he is processing it. There may well be alot of repitition in your ‘conversation’ but let there be give and take, you should both take your turns at speaking and listening.
  • Joshua may well say something random in is attempt to communicate, do not read too much into that, it may just be his word of the moment and could be unrelated to what you have just asked.  At the moment he is saying “tummy” and lifting his tshirt to flash his belly at people. We have been trying to discourage that so it would be important not to encourage him by reacting too much, we try to ignore that behaviour. But it could equally be ” no way!”

It is difficult I know, but you need to comminicate with Joshua at his cognitive ability: Joshua is a tall, slim, handsome 17 year old now but he has the brain of a toddler. So most of these communication tips would work equally well for a toddler. I am not suggesting that you enage in ‘babytalk’ with him but you need to reflect that although he looks like a teenager, if you want to communicate with him successfully, you need to reognise his special differences and reflect that. But I promise you, if you were fortunate enough to meet Joshua in the streets, when he was in a fun mood, he would lift your spirits ,so it is worth investing some time into getting that interaction right.