Ears Are Really Useful Things

August 2014 046This is not the post I had intended to make this week but, as is often the case, something happened. Ears: I’ve mentioned these before as Dylan has a habit of trying to remove them (other people’s not his own) when he is anxious. I hadn’t realised until this week, however, how useful ears can be.

Dylan is strategic about ear attacks. He wraps his arm around the back of my head to prevent me from moving it then digs his nails into my ear from behind. This gives him purchase on it, allowing him to twist and pull as if to wrench the ear from my head. Quite often, the tip of my ear gets caught in the process. I try to keep Dylan’s fingernails short given this behaviour but even when just cut they are scratchy and often break an ear’s thin skin. My left ear usually comes off worse and has been infected a couple of times since the behaviour emerged a year ago.

wet leaf fall 007I cannot begin to describe how painful this is. There is something very delicate about the back of the ear where the fleshy part meets the skull. I try to keep my humour by calling myself Van Barrett and enjoying the opportunity the ear attacks afford for being creative with a scarf (bandage-style around my head). Sometimes the behaviour disappears for a while. Recently, for example, I have felt brave enough to wear earrings again and to not bother with a scarf. A couple of nights ago, however, I sustained a bad attack. Recording it in Dylan’s log before I went to bed, I noted it had been nearly a month since the previous incident. I have no idea why Dylan pulls ears but am increasingly of the view that there is no single trigger. I continue to think sugar may be implicated in this and I know that Dylan had some ‘banned’ items earlier in the week. I’m also persuaded, however, that the behaviour is a response to anxiety which, for Dylan, can have multiple causes.

This week’s incident happened at 9pm on Friday night. Dylan was in his room watching Thomas the Tank Engine and I was downstairs almost dosing through the Master Chef final. Suddenly things kicked off and the next hour was trauma and distress. When Dylan calmed, eventually, he wanted me to hold him tightly, putting pressure on his ears while he lay on the sofa. Once again I wondered whether his attacks on people’s ears are because his own are hurting. Dylan won’t let the GP near them to look but I made a mental note to myself to raise this, again, when Dylan sees the GP for his Cardiff Health Check in a couple of weeks.

Master Chef was still playing to itself. Dylan doesn’t usually watch TV but he is interested in food and the programme seemed to take his attention and soothe him. I needed to put TCP on my ears and arms but because of the smell of it I waited until I’d calmed Dylan enough to get him into his bath and bed. I could hear him shouting – not in a distressed way, but urgently and with a need – for long hours afterwards.

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IMG_0029 (2)In some ways I wasn’t surprised by the incident. At last, I thought to myself, here it comes: the reaction. For the last two weeks Dylan has been transitioning into the residential home where he is to live. The transition plan is gentle but has still involved Dylan being away from home overnight more than he is used to. Dylan’s time has been divided between his day centre and residential home and as staff from both settings have joined up, people have appeared out of context. On days when Dylan has been at the residential setting, his usual routine has been interrupted. However much care you take, and whatever support you put in place, this is an unsettling time.

And yet so far Dylan has been calm. Everyone has commented on how well Dylan is coping. Alert and happy, he seems to be taking the changes and new experiences in his stride. Already he has achieved things I wouldn’t have contemplated: working in the community shop run by the residential home, for example, and riding solo on the TransPennine trail. When I was told that Dylan had ridden a trike I was alarmed; but Dylan always went on the back of a tandem when we cycled, I said. He doesn’t know how to steer and brake, I explained. The manager sent me this photograph in response: what more reassurance could I need than that smile? But even with Dylan’s achievements there will be anxiety and perhaps the incident this weekend was a sign of this.

books-etc-002Speaking of signs, these may have something to do with the ear attack. Signs (and symbols even more so) are important to Dylan. One of the things I did last year, at the height of Dylan’s anxiety, was to set up a weekly board at home. Although he had managed without one previously I thought it might help Dylan make sense of life which, at that point, followed a complex pattern. It was probably one of the best practical things I’ve done for Dylan. Since then we have established a bedtime routine of talking through what will happen the next day using the symbols. When Dylan removes the next day’s symbols from his board, it is a sign that he has understood the shape of tomorrow. When Dylan started attending his day centre full time and had clearer routines, he was able to put the symbols for the week on the board himself on Sunday evenings. This not only helped Dylan make sense of his week, it created a sense of participation and ownership.

July 15 transition 003Because of their importance in Dylan’s life I encouraged Dylan to take his symbols when he went to his new home for the first time a couple of weeks ago. That week Dylan was travelling between settings. Although he is usually very careful with his things, somehow the symbols went missing. I have hunted through pockets and bags and asked at Dylan’s day centre and residential home but they appear to have vanished completely. As well as symbols and pictures of activities I wasn’t sure Dylan recognised the symbol for, there were laminated photos of key people and places in Dylan’s life. Where, I wondered, was my photograph now? At least I will be smiling, still, I told myself.

While I’ve been trying to locate Dylan’s lost symbols he has been getting quietly agitated. ‘Lost it’ he had said to me earlier in the evening on the night of the ear attack. Standing in front of his empty board he drew circles in the air with his upturned palms (the makaton sign for ‘where’). ‘Lost it’. I made a note to myself: get some new symbols for Dylan. I can’t do this easily myself as I don’t have the necessary software. It’s expensive and parents tend to rely on schools and care settings to produce and laminate such resources. Actually, this has always been frustrating and unsatisfactory and if I had our time again I would probably invest in a widgets package, a photocopier, a guillotine and a laminating machine for the home (in fact I might do that yet).

Interestingly Dylan has added 'skating' on Friday (his usual routine) and some day of the week symbols (not correct order but a good attempt).

Dylan has added ‘skating’ on Friday (his usual activity) and some day symbols (not in the correct order but a good attempt).

After the ear incident I spent a restless night. There was a chance, I decided, that Dylan’s distress was linked to anxiety about the lost symbols as much as to transition itself. So the next morning I made some pictures I thought Dylan might accept as an interim measure: replacement photos and some pictures-for-symbols as well as internet-sourced photos of activities on his programme for the week ahead. The first sign that Dylan was stirring that morning was his voice up the stairs to the attic where I was cutting and sticking: ‘Lost it. Lost it.’ I showed him the pictures I had made. I thought I detected some tension leave Dylan’s body. I fastened the pictures to his board and talked him through his week. I saw him smile for Castle on Monday and Seaside on Friday. Perhaps, I told myself, this is all that was needed.

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When I drove Dylan back to the care home that evening he announced ‘lost it’ as we drove up the drive. Once in the home Dylan took my hand and led me (and a care worker) confidently to the office, saying ‘symbol’. He clearly knew what he wanted and where they were kept. The care worker fetched a box of rebus and Dylan sat contentedly going through the symbols, picking out familiar ones and finding duplicates of some he had lost. I loved the way Dylan pored over the symbols, running them through his hands and pouncing on the ones he liked. It was, I thought to myself, the way I might browse a dictionary or thesaurus.

When I left him later Dylan still seemed a little troubled that he couldn’t find his lost symbols but appeared much happier. The care home are in the process of making Dylan a communication board and we showed this to Dylan, telling him it would be ready very soon. I’m not so naive as to think it will eliminate Dylan’s anxiety enough to stop the ear tearing; if this were the case it wouldn’t have been happening at home. However, not having symbols when you are going through a transition period must be awful. I would hate it if someone took my words away from me at such a time. So I’ve vowed not to leave Dylan without his symbols again, however briefly; I need to set up a portable as well as a fixed system so there is no risk of Dylan losing his only set.

I have a lingering anxiety though. What if Dylan isn’t referring to the symbols when he says ‘lost it’ but rather to what they represent? Might he be trying to communicate to me that he is anxious that he is losing his home and his mooey? What if he is telling me that he’s anxious about losing his day centre? The latter is, of course, the case: he is going to lose it. I have been wondering when and how and what to tell Dylan about the changes. Reluctant to trigger anxiety in him and create difficulties during transition, I have avoided telling Dylan what will happen beyond the day and week we are living. But if Dylan is using the term ‘lost it’ to express the loss of something more abstract than a two inch symbol, perhaps it is time for me to be brave too. On my list of things to do: produce that social story I’ve been writing for him in my head.

So although it was challenging Friday night’s ear attack led me to some useful learning. Firstly, I need to try again to get Dylan’s inner ear examined. Secondly, I learned something about communication: that Dylan’s symbols are important to him at a fundamental level and that he may actually be processing experience at a more sophisticated level than I realise. I need to sort out visual communication systems for Dylan as a matter or priority. But the incident was also useful in alerting WP_20150508_16_19_08_Prome to something entirely incidental. Recently I have been irritated by my spectacles which have felt increasingly uncomfortable. Twice I have visited my optician to complain that they are badly fitted and require adjustment. Both times the receptionists have politely fiddled with them for me in an effort to oblige. Last week when I complained again, however, the receptionist told me that she really could not see what the problem was: they were correctly fitted. Perhaps, she suggested, I just had to get used to them?

Bathing my ears in TCP this weekend I realised why my spectacles have felt so uncomfortable; the backs of my ears are chronically sore from the repeated attacks on them. The arms of my glasses, where they hook over my ears, must be pressing so as to create discomfort. I’m not sure what I can do about this but the realisation will, at least, stop me harassing the optician. And now I know that ears are really useful things: the thought that I need them for seeing as well as for hearing amuses me. Contact lenses would be a solution I suppose if I could bear the thought. I almost prefer the idea of a pince-nez or lorgnette. They would probably style well with a head scarf.

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The piece I had planned to write (which I referred to in my previous post) is coming soon…

11 thoughts on “Ears Are Really Useful Things

  1. Liz, this is endlessly fascinating. As ever. Particularly in a week where I heard the so-called Autistic Gardener on the radio, and visited my barely communicating son in his new care home. In his first week he had been introduced to pottery, Tai Chi, and painting furniture for resale. A place full of activity and warmth and enthusiasm, and which,I have to say, of course , is a place for the learning disabled with epilepsy, and autism an add-on, as it were. I do not believe that Kanner would have diagnosed the gardener as autistic. I fear that the label has become a catch- all for anyone who is ‘different’; and has achieved an unintended notoriety since the NAS was formed in 1962. I do not believe any more that the AG, and Danny, and Tim, are on one seamless spectrum, and it is time the concept was abandoned and substituted with clusters or constellations of behaviours, rooted in brain disorders. This is not a new idea. ‘Constellation’ or cluster theory has been around for some time and only the power of the autism lobby , the massive investment in the use of the ‘autistic’ language, and men like the AG are keeping the word in the public domain . We should all be fearful when numbers can be quoted as pervasive as 1 in 68. It reminds me of sick joke by the late Lenny Bruce that when he was in Nassau (the Bahamas) everybody had cancer.

    Autism is, I venture the thought, is no longer about handicap or disability, it is about ‘difference’. It is not about the scandal of Winterbourne Priory, but about The Chelsea Garden Show.

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    • I don’t know about my piece being fascinating, Michael, but your comment certainly is. I agree with you about the spectrum that has become so broad it is useless. I don’t doubt that there is a spectrum of need and that some of us have characteristics reminiscent of ‘autism’. I certainly do. Because I know ‘autism’ through Dylan, however, I wouldn’t dream of using it as a label for myself or for ‘The AG’ – as I agree Kanner would not. I watched one episode of the show; there is no useful link between the participants and my son. I don’t think I’m alone among parents of very severely autistic children in saying that the application of the term so broadly does nothing to support Dylan and quite possibly detracts from the reality of his needs and neurology. I have written about cluster theory previously and am quite persuaded that this is a more useful approach. Certainly it is a sharper lens with which to understand Dylan. I think the issue is, pursuing such a line of thought is considered to be taking a ‘medical approach’ (nonsense, but that is what is assumed) whereas ‘Autism’ fits better within the ‘social model’ of disability. There is a longer piece to be written here about the politics of autism – don’t get me started! Liz p.s. delighted to hear about the activities on offer in the new home – it sounds very positive indeed.

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  2. Hi, Liz. Thanx for your post, again! It makes me think about lots of things related to my ‘little one’. But I should confess I am not comfortable with the situation you are dealing with. You really have to be brave (again) to make the things work. I hope you can.

    Best regards

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    • Thanks Eder – and for your concern. Please don’t worry. I am well-supported now that Dylan’s specialist place has been approved. There have been some difficult times over the last 12 months though. It is hard to write about but I want to be honest about what it can be like caring for someone with a learning disability and the anxieties associated with being autistic, non-verbal and at what is a difficult age. I go on hoping that Dylan will come through this and that those of us caring for him will come to understand him better and learn how to support him. I suppose my biggest anxiety is that there is a medical explanation for Dylan’s episodes (during which times Dylan is quite unlike his ‘usual’ self) which I haven’t been able to get to the bottom of given Dylan’s complex needs. Yes. I think that is what troubles me most… Thank you for reading!

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  3. I hope the situation gets better with Dylan’s upcoming transition, Liz. I like the photos of Van Barrett. 🙂 I bet you could get creative with your eye glass frames if they are hurting you terribly. They make frames that are straighter armed, sans hooks, they may help. Or maybe even wrapping some soft cushiony athletic tape around the ends may help? or hollowing out an earplug and affixing it around the hook of your frames? Something to soften or dampen those contact hot spots when they flare up? Just some thoughts. Or can you buy lidocaine ointment in the UK? It’s a painreliever that may deaden the pain sensation.
    x, c-

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    • Christy these are wonderful, practical suggestions thank you. I have never heard of lidocaine but will ask at the pharmacy. Good idea. I have seen those straight-armed glasses (usually on men sans hair as well as sans hooks!). They might be good. Before I realised why my glasses were hurting I had taken to wearing an old pair some days as they didn’t hurt as badly – now I realise it’s because they’re lighter and don’t rub the same way. Not varifocal however:-( I will try cushioning as you suggest – maybe attach cotton wool for comfort. I will feel as if I am becoming my dad (whose glasses are often held together by bits of tape)! I have just rung to see how Dylan is and he is fine apparently – hopefully the anxiety, if that’s what it is, has passed for now… Lx

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  4. wow i wonder what else he can do by himself!?! i’m excited to see!
    i wonder sometimes if the visual schedule they attach to OUR serenity
    seeing us focusing so much on it
    that they find it a need to do not for them but for us
    (though i know visual schedules DO seem to work much better)

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    • Yes it’s great isn’t it 🙂 He did tip the trike over later apparently but that’s OK – it’s important to fall by yourself too 🙂 I’m going to make a list of all the things I have been in the habit of doing for D (as mothers do – probably not entirely about autism or learning disability!) and see if he can get involved in those things at his new home. So although I’m not sure how useful the concept ‘independence’ is, D can at least be independent of me with time. I used to think the visual schedule was for me too, as you suggest, but have been really struck in the last week by how much it is D’s currency. Perhaps that’s partly to help him figure out the changes and he won’t need it so much as he settles. Perhaps I’ll make one for myself this week and see if it keeps me calm 🙂

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  5. Morning Liz ! Exciting and ‘interesting’ times for you and Dylan. I really hope your ears heal up, and maybe the person to see is the dispensing optician rather than the receptionist or try a different optician, we find the small independents are often better than the large chains but that is anecdotal. One can always go to an optician who hasn’t made the glasses and ask their advice, most of them are happy to help as they hope you will come back at a future date. Some sports shops sell the Chums cotton retainers, one of their styles might work to cushion the ends of your glasses possibly, though they do alter the fit.

    Your writing about needing laminating machines and photocopiers reminds me so vividly of my teaching days and having to create and make endless supplies of flashcards and materials and the hours and hours of thought and physical making it took. Maybe it would be something one could get funding for? A community/collective/workshop that could be usefully part of the activities done in a community or group home or maybe by a network of caregivers who are at home a lot as ‘a cottage industry’ and maybe costs could be reduced that way, with the internet it should be possible to do? idle thoughts on my part probably. Or maybe it is already done somewhere out there? I will investigate. Then if one had sets of cards logged to individual’s, if they did get lost, it would be easier to create replacements. It is so heartening to think that new experiences are opening up for Dylan, I love the photo of him on the trike, just lovely 🙂

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    • Hello Joanna! Yes, interesting times for us. It sounds from what M says that things are going well for your family too 🙂 Thank you for your useful advice. Last night I taped cotton wool around the end of my glasses. I must admit I lost my nerve about wearing them to work like that this morning! However, it did occur to me that someone must surely manufacture cushioned tips so your reference to Chums is very welcome – don’t know of these but I shall go and look. And if it is all still too painful I shall go back and ask to speak to my optician rather than the desk people, as you suggest…

      Yes, the making of resources reminds me too much of teaching to really enjoy, I suspect. I have spent hours and hours in the past making things for teaching purposes. Perhaps that’s why I’ve never really got myself as organised as I might have for Dylan. I am confident that the home will now take the majority of this work over – once Dylan is based there rather than dividing his time between places it should be much easier. I spoke to the manager today and they are going to add photos to Dylan’s programme, as I did at the weekend as an emergency measure, on a regular basis. So as is often the case a challenge has turned into an opportunity…

      I just love your idea of a collective for parents. As you say, this might be already available in some areas but I’m not aware of one where I live. What a great model though – a room with resources available for printing, making, sharing – a sort of workshop-cum-library where you could produce/swap/borrow symbols and resources. I suspect that parents of younger children are using electronic devices increasingly however – ipads with communication systems on for example. I’ve tried with Dylan but he seems to want the physical symbols to hold in his hand. Perhaps at 21 he is already too old to be a digi-kid 🙂

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