Demand Avoidance

I have been pondering this blog for a while and, ironically, avoiding it. There are a few reasons why: it requires research which takes time; I may have had more than my fill, of late, of demand avoidance and I’m not sure how kind it is to myself to spend even more time thinking and writing about it. But hey ho, here I am writing about it because there’s no time like the present and it will, at least, feel current and relevant.

I thought this would end up as a compare and contrast between PDA – Pathological Demand Avoidance – and demand avoidance as part of an attachment profile and potentially some mention of ODD (Oppositional Defiance Disorder), with me arguing that although Little Bear is pretty demand avoidant, I don’t believe he has PDA. However, after reviewing the literature, I feel comfortable to say that PDA and demand avoidance with a trauma history are different conditions and I do think this is acknowledged by some knowledgeable professionals, even if not widely (See this piece of research PDA and differential diagnosis ). I should point out that PDA is not officially recognised as a condition in the DSM or ICD diagnostic manuals but there is a growing belief that it does accurately describe the needs of a specific group of individuals (See PDA Society for more info).

Assuming it does exist, I think what would be really useful would be a Coventry Grid type document (comes up on Google if you are interested)  that drew out the differences between demand avoidance in PDA versus demand avoidance in a trauma background. The difficulty is that this is extremely difficult to draw out. One key factors seem to be the case history – are there trauma/neglect/attachment issues in a child’s background or not? Parents of children who match the diagnosis of PDA are rightly worried about it being branded an attachment disorder because there is a direct insinuation that they have neglected or abused their children. I can see how this could be problematic. However, I do think that where there is identified trauma in a child’s background, such as in Little Bear’s, this should immediately bring into question a diagnosis of PDA. Similarly, I would also say that trauma in a child’s background should bring into question an Autism diagnosis. I’m not saying that an adopted child couldn’t have PDA or Autism: a small percentage could. However, I am saying that where there is trauma in a child’s background, the impact of this should be considered first and foremost.

The second key factor appears to be whether a child who is demand avoidant matches the criteria for Autism. If they do, they are more likely to fit the PDA profile. However, there is also literature out there to contradict this – see Gillberg Research .

I can’t really work out where ODD fits in, because Little Bear appears to fit the profile for that too (ODD is recognised and does have DSM & ICD criteria) but my hunch, again, is that it wouldn’t be right to diagnose him with it.

The group I am interested in are those such as Little Bear, who do not meet the criteria for Autism and do have trauma in their background and are markedly demand avoidant. What is going on with their demand avoidance and how should it best be managed?

A useful place to start seems to be the Extreme Demand Avoidance Questionnaire (EDA-Q) – a questionnaire which has been designed for research purposes and is not diagnostic, but could be useful in picking apart the nature of behaviours we experience. You can find it here: EDA-Q

I have filled it in for Little Bear. As you can see, he scores 38 points which doesn’t reach the threshold for a PDA diagnosis (the threshold is 50 or over) , though it does say that those scoring lower may still meet the criteria as individuals can be impacted differently. I’m a little unclear as to how this type of decision would be informed. Either way, I don’t think he has PDA, yet he certainly does have a higher than average propensity towards demand avoidance. For context, Big Bear scored 6 on the same questionnaire.

These are the descriptors in which he scored the most highly:

• Is driven by the need to be in charge
• If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick).
• Has difficulty complying with demands unless they are carefully presented.
• Has bouts of extreme emotional responses to small events (e.g. crying/giggling, becoming furious).

I have previously written about his need for Control which fits in with the first and second point. In reference to the third bullet point, sometimes demands that are made in a reverse psychology kind of way (‘I bet you can’t do x or y’ or ‘I really hope you aren’t going to eat my apple’), or a challenge kind of way (‘I’ll time you to do x’) go better than a straight forward ‘do it, or else’ kind of way. The fact that I have thought of alternative ways to phrase demands suggests this is something we have to do quite often. In reference to the fourth point, at the moment, something as small as asking Little Bear to go to the toilet and then, God forbid, actually wash his hands afterwards, is enough to unleash fury.

It is also interesting which statements he didn’t score on. I am assuming that in order to gain a high enough score to meet diagnostic levels for PDA, a child would generally score highly across all descriptors. Could it be the areas where children without PDA don’t score that are important diagnostic indicators for differential diagnosis?

Little Bear didn’t score on the following:

• Finds everyday pressures (e.g. having to go on a school trip/ visit dentist) intolerably stressful.
• Takes on roles or characters (from TV/real life) and ‘acts them out’.
• Makes an effort to maintain his/her reputation with peers.
• Prefers to interact with others in an adopted role, or communicate through props/toys.
• S/he was passive and difficult to engage as an infant.

I’m not sure if it’s just the examples used in the point about finding everyday pressures intolerable, but Little Bear loves a school trip and his behaviour was exemplary the last time we went to the dentist so I’ve scored it as zero. I would say that he can find new situations or places anxiety provoking and that might lead to more dyregulation. However, I wouldn’t say that necessarily correlates with greater demand avoidance in those situations. It might, or it might not – I suspect it is more complex than just where we are at the time.

If the descriptor were to mean every day, seemingly inconsequential demands, such as eating, toileting or getting dressed, I would have scored it much higher.

The bits about taking on a role or communicating through props don’t resonate here. Little Bear has good imaginative skills and sometimes there are difficulties separating Fantasy versus Reality but I wouldn’t say he uses them as a means of communication or specifically to avoid demands. I think this is where social mimicry as part of an Autism diagnosis comes into play.

In terms of how Little Bear presents himself to his peers, he certainly doesn’t try to comply with them but not us. I would say he takes a blanket approach to demand avoidance and if anything, there is a slight bias towards doing what familiar adults say. The less attached he is to a person, the less likely he is to co-operate with them, be they child or adult.

In all honesty, I don’t know if he was passive as an infant, as we didn’t know him then, but I cannot for one minute believe that he was!

The other items on the questionnaire that I have scored as ‘somewhat true’ or ‘mostly true’ are mainly not scored more highly because the behaviours come and go or because they used to be a problem but we have seen improvements. I have read that children with PDA can fluctuate in their demand avoidance – becoming much more co-operative when they are comfortable and relaxed. I would say this is true for Little Bear too. If he’s struggling in general, the demand avoidance will be much more pronounced. It is to the point where we have had months of co-operation – where I could just say, “Please put your shoes on”, as I would to any other child and Little Bear would do it with a smile – and then times like we are currently experiencing where every tiny request feels like a battle and can all too easily lead to escalation.

I have gone on the hunt for information about demand avoidance in developmental trauma to explain why this would happen but it’s thin on the ground. The Beacon House information about trauma does say this:

• Boundary setting can trigger a big reaction or noncompliance in child (where there are Attachment insecurities)
• Prolonged meltdowns over small things (as a part of difficulties with Emotional Regulation)
• Rule breaking at school
• Unresponsive to day to day requests (often seen as non-compliance) (as a part of Behavioural Dysregulation)

I guess those things sort of add up to the levels of demand avoidance that we see but I’d be really interested in knowing how other children who have experienced developmental trauma score on the EDA-Q and how their scores are distributed across the descriptors. I can’t help feeling we don’t have enough information about this and at the moment and it would be difficult for clinicians to make informed differential diagnoses between PDA or ODD and demand avoidance caused by developmental trauma.

If anyone knows of any other sources of information I’ve missed, please get in touch.

The one thing that I can unequivocally say is that parenting a child with demand avoidance is a little tricky (I’m totally under-egging it) and that finding ways to manage and manage it, has us scratching our heads. I am very much still working on it but here are some things that sometimes work at our house:

• Know your own triggers. It is very, very difficult to be calm when a child won’t do anything you say. I having to be conscious of the fact that this could cause me to snap and that I need to very deliberately react in a different way. I find this is much easier to do if you plan your response in advance, rather than just reacting when you are taken by surprise.
• At the moment, the plan which feels most effective is not shouting and moving away from, not towards Little Bear. He needs the space and I am less likely to react negatively a bit further back, busying myself with something else. This more casual approach seems to help things simmer down. Little Bear tried to saw the table with a dinner knife the other day, in a bid to avoid eating his tea, but I barely turned around. I did calmly tell him that it was his choice whether he carried on doing it or not, but if he did, I would take the money from his pocket money to fix it. It wasn’t in a threat way – just a pointing out a logical consequence way to help him with his decision.
• Self-care. I know people mock the concept but maintaining patience and calm in the face of zero co-operation is exhausting. We must look after ourselves (I’m talking to myself as much as anyone after a friend gave me a stern telling off!)
• Allow much longer to get ready to go somewhere than you’d think necessary. This allows your small person to spend time avoiding and doing everything but getting ready while you gently steer them through the necessary tasks. Time pressure won’t help anyone.
• Reduce the demands. There are certain tasks that have to be done but can you help by dressing or feeding or helping in another way? Other tasks, which are not essential, could be omitted for that day.
• Often it is verbal demands that Little Bear can’t tolerate. Sometimes we manage to acknowledge this in advance of what is likely to be a tricky situation for him e.g. bedtime and are able to collaborate on a solution. We’ve found that things like having all the equipment Little Bear needs for a task laid out for him e.g. toothpaste already on the brush, pyjamas laid on the floor etc. means he can complete the whole routine himself without us needing to make any verbal demands. Visual supports like a tick chart or timetable can also work.
• As mentioned above, careful wording of a command can help e.g. reverse psychology or a challenge. Unfortunately two good choices no longer works for us, because Little Bear has figured out he can just agree to neither.

 

I should point out that underlying the demand avoidance is likely to be anxiety of some kind – whether it be a fear of losing control or some other internal precipitant – so we should be mindful of this and manage the behaviour as kindly as we can.

I have to be honest and say that I am a little torn over demand avoidant behaviour. Half of me is extremely therapeutic about it and willing to be patient and accommodating. The other half of me thinks that one cannot successfully navigate life never doing what one is asked (employers and the Police certainly aren’t too keen on it) so perhaps there is some mileage in being encouraged to push through the difficulty barrier of wanting to avoid demands. I insisted, the other day, that Little Bear did carry out his reading before he went on an exciting day out. I insisted very quietly and patiently and had been specific on how many pages I expected (hardly any) but such was the strength of his need to avoid the demand that he would have given up his day out just to avoid the reading. We persevered and when he finally did the reading, we were able to praise him and make a big fuss for pushing through something we knew he was finding difficult. He was pleased with himself and had a lovely day out.

Isn’t this how resilience is built? By people believing you can do things you think you can’t and supporting you to achieve them anyway? Life for Little Bear is going to be extremely difficult if he can’t cope with the smallest of demands so I don’t see that lowering our expectations to zero will be of much long term use to him. I suppose, like everything, it’s a fine balance between being therapeutic and building life skills and we continue to hobble along the line.

 

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TP, or not TP, that is the question

We’re having a bit of a weird week of it here at Adoption: The Bear Facts. Little Bear is not feeling good. It could be the hot weather but we rather suspect it is more than that. We think it is likely to be the anticipation of moving classes at the end of next week and with it, more of the Fear of Loss that I talked about last week. This time he is fearing the loss of his teacher, whom he has had for two years and who is really the only teacher he has ever known at big school. He is very, very fond of her and they have a lovely relationship. I know she is very fond of him too. I suspect she doesn’t often get the opportunity to make such a difference and see such an unprecedented level of progress in one of her pupils. This transition is a Big Deal all round.

The magnitude of the deal is being expressed through the medium of Little Bear’s behaviour. It is a little shocking after several months of relative calm and my parenting has certainly been tested. As such, I have been pondering on Therapeutic Parenting and how TP I really am.

Here’s a confession: I talk about being a therapeutic parent now and again but when I’m saying it, I’m often wondering if I actually am a bone fide therapeutic parent or, in fact, just a parent. That probably sounds a little ridiculous but I often feel that TP is a Holy Grail of adoptive parenting that can rarely be reached and can also be used as a larch branch with which to beat ourselves. I am certainly not somebody who often refers to ‘how to guides’ on TP, preferring to make things up as I go along. I’m not sure whether I mean ‘wing it’ or ‘follow my well-informed instincts’ but either way, my process of (therapeutic) parenting is fairly organic.

It is also fair to say that some days feel more therapeutic than others. Sometimes being therapeutic is a little less practical than other methods, which can lead to less of it being done. For example, the school morning routine has taken something of a dip here recently. In the dim, distant past, Little Bear used to need a lot of help with getting ready. All the demands were too much so I used to need to help him with dressing, teeth-brushing etc. However, he has made lots of progress and for quite some time now he has been able to complete the whole morning routine himself, with just a few prompts or reminders from me. That was, until Wednesday.

Wednesday’s routine did not go well. Little Bear was completely uncooperative, growly and intent on doing everything other than getting ready. I could see, after a quick thought or two, that there had been signs of decline earlier in the week. It was evident Little Bear wasn’t coping and I knew that the solution was to reduce the demands on him. However, that is not as easy or practical as it sounds when you have a finely timed routine, need to make two packed lunches because you weren’t organised the night before, haven’t eaten your own breakfast or got dressed yet and barely have time for those things, let alone any other things. As it is not socially acceptable to do the school run in your nightie, I made a quick decision that I didn’t have time to do it the therapeutic way. That sounds pretty bad in black and white but part of me thinks such is life. We do have deadlines and timeframes and sometimes Mums have to nag.

On Thursday I was a little more organised and Grizzly was working at home and I was more prepared for the possibility that extra help might be needed. However, I find having to do TP the very first second I wake up pretty challenging. I am not a morning person. Little Bear woke up in a foul mood. This is rare and doesn’t bode well. Little Bear got his I pad, got back into his bed and wouldn’t get out. Having dragged myself out of bed despite my internal protestations, I gave him lots of chances; pleasantly then more sternly. I was further irked by him shushing me every time I spoke. I did not react therapeutically. I expressed my crossness, though I managed not to shout and I banned his I Pad because without the bloody thing he would actually have got up. Little Bear continued not complying and I asked Grizzly to take over while muttering something about throttling him.

This is why I cannot possibly write a guide to therapeutic parenting.

However, after a moment’s peace and a few bites of breakfast, I was able to take some deep breaths and get a bit more TP. I observed out loud that he didn’t seem to be feeling too good today and wondered what that might be about. I don’t think I got my wonderings right and he was still grumpy. He demanded I feed him. It was not a particularly polite request but after modelling a nicer version just for him to hear, I did feed him. I also dressed him and put his sun cream on for him, all the while ignoring anything rude and trying to soothe him with my tone, pace and words. He went to see Ronaldo, his hen, who flapped her wings in his face and hurt him. I cuddled him, wiped his tears and made him laugh saying she thought his toes were worms.

I think my conclusion from that is sometimes the best way of being therapeutic is knowing when to step away and let someone else handle it. The bit when I kept my temper went pretty well as Little Bear got ready for school with very little demand on him and we successfully dropped him off without issue. Was I TP though? Or just parenting patiently?

I braced myself for school pick-up, rather suspecting the day wouldn’t have gone well. It hadn’t. Apparently Little Bear had thrown another child’s water bottle and smashed it and got into trouble for giving a different child a shove. I didn’t raise any of this with him, just telling him I had chatted with his teacher to see if he was ok because I was a bit worried about him. Little Bear asked me to watch him on the climbing wall and I did. Then I said it was time to go home. Little Bear wanted to do the climbing wall again. I re-iterated that it was home time and began to walk across the playground. Little Bear scream-growled and called me a name. I chose to ignore that and continued walking, knowing he would follow.

The first part of the walk home was fine. Little Bear announced we were going to play football when we got home. Big Bear said he wasn’t playing. I said I didn’t think any of us should as it was far too hot and a cold drink and a little rest would be a better plan. Little Bear began shushing me. By far the hardest part of trying to be therapeutic is overcoming your instincts to go mad when directly provoked. It took some effort but I ignored the shushing and tried the empathising route. Little Bear stuck his fingers in his ears and walked ahead. Whilst this pushed my buttons, I made myself take a deep breath and not get sucked in.

At home, Little Bear was still cross. He announced that if I spoke to him he would tell me to ‘shut up’. Usually, if he tries to threaten me like this, I call him out on it and explain about why threatening people isn’t nice. However, this evening I was just able to stop myself. This behaviour wasn’t really about being coercive; I think it was about needing some peace and his rather rudimentary way of asking me to be quiet. It can be so hard in the heat of the moment to look beyond the behaviour at what might be causing it but that is something that I seem to be getting a little better at with time.

I decided to go for the killing it with kindness approach; rallying around with a cold drink and snack. I suppose once-upon-a-lack-of-TP-knowledge I might have thought this was rewarding bad behaviour.

I left Little Bear with the TV and sat outside with Big Bear for a few minutes. “He isn’t having a good day is he Mum?” Big Bear asked. No, I agreed, he isn’t. I explained I thought it was because he was worried about the transition to the next class.

Later, at tea time, I tried to find out a bit more from Little Bear about what had happened in his day. As usual it was high tales, plot-twists and publishable fiction. Trying a different tack, I asked him how his friends were feeling about going to year 2. “They’re upset about it,” he said, “They really love Mrs Current Teacher and don’t want to leave her”. Aha. We explored the situation a little more, through the feelings of his ‘friends’. I have no idea if this is a known TP technique but it was up the sleeve and seemed to work.

At this point, Big Bear joined in and I was struck by the fact it shouldn’t be called Therapeutic Parenting because the whole family do it. Maybe it should be Therapeutic Family-ing. I sat back in admiration as Big Bear reassured him how close current teacher’s classroom would still be; how cool future teacher is; how Little Bear (or his friends) could still go and visit current teacher if they wanted to and how current teacher would miss him too. He told him it would all be ok and cuddled him.

Big Bear has never read a book on TP, he probably hasn’t even heard of it, yet sometimes he is more instinctively therapeutic than Grizzly and I stuck together.

It felt like a good time to talk to Little Bear about giving his teacher a present. I have been agonising over what to get as I really want to get it right for them both. I am extremely grateful to her for her pivotal role in his learning so far so want to give her a token of our appreciation that feels right for what she has done. I also want Little Bear to have some involvement and ownership in at least part of the gift. Whilst it certainly seems possible to overthink a present, I have finally decided that Little Bear should draw a picture of him and his teacher and we will get crafty with a mount and frame it. I put this idea to Little Bear over tea. He was pretty bought in and wanted to get started immediately. After tea, he sat and concentrated hard and put lots of effort into his drawing. The idea that his teacher will have something he has done to keep and will think of him every time she looks at it seems to be helping him.

I have to admit that by the end of the day I felt like I might have done some therapeutic stuff. We certainly managed to end on a better note than we had started with.

Days like yesterday can be challenging. There are extra things to think about; you need to be on your toes; you need to override your natural reactions. You need to have your wits about you and you need to try as best you can to get into your child’s mind. Usually, when I’m not rushing around in my nightie, I try to do these things. However, I struggle to do them well first thing in the morning, when I have PMS and at other random points when my resilience dips. I occasionally mutter under my breath, give rash consequences and sometimes raise my voice. Is that TP? Or not TP?

I genuinely don’t know. I just know that I’m trying my best and to be TP 24/7 would take a Herculean effort. Can we change the acronym to Trying-your-best Parenting? Cos I think I’ve got that sewn up at least.

 

 

Speech Therapy Works

As a Speech and Language Therapist it shouldn’t really be a revelation to me that speech and language therapy works. Obviously I have always believed in it otherwise I wouldn’t have stayed with it as a career for over 14 years. It’s just that trusting something works because you understand the theory behind it and actually experiencing something on a practical level, within your own home, with your child, is quite different.

Obviously I have experienced success in my professional life, but that has been within the confines of a large caseload and various time and resource pressures. In the latter part of my NHS career, as a more senior clinician, my main role was assessment and report-writing. I rarely did any therapy as we had a structure where skilled assistants carried out care plans under our supervision. It meant I didn’t get to know children as well as I’d have liked and I didn’t get to share in their small steps of progress week by week. I re-assessed and reviewed progress, seeing improved assessment scores but that isn’t the same as cultivating progression yourself.

Now that I’m an independent therapist I’m really enjoying being able to properly get to know the children I work with. I’m completely invested in their therapy and am just as pleased when they move forwards or overcome something as I am when Little Bear does. I do see (and feel) therapy working now.

However, what we have experienced at home has taken my belief in speech and language therapy to a whole other level.

I was recently running a communication workshop (for adopters, prospective adopters & professionals) when somebody asked me a question that made me realise the examples I talk about in it, from Little Bear’s communication profile, paint a bleak picture. The picture is totally accurate and reflective of his communication skills when we first met him, aged 3 and a half. The picture, detailing significant difficulties with attention and listening, comprehension, expressive language and speech sound disorder was bleak. At the time I was fairly overwhelmed by his level of need and the magnitude of the task ahead of us.

Here is a very brief summary of Little Bear’s presentation then:

Little Bear was not tuned into language at all and did not respond to verbal instruction, including his own name. His comprehension was better than it appeared but significantly delayed for his age. Little Bear had a very small vocabulary that didn’t meet his needs. He did not have words for common, everyday objects such as cow, train, television, food items etc. Little Bear couldn’t answer ‘what’s your name’, his only size word was ‘big’, he couldn’t name colours or count and he couldn’t put more than about 3 or 4 words together. The words that Little Bear did have were unintelligible. Little Bear was extremely frustrated and he was often left with no other option but to express himself with his behaviour.

I quickly realised this wasn’t a straightforward language delay and that Little Bear’s needs met the criteria for Developmental Language Disorder

At the time I had no idea what the prognosis would be but I suspected it wasn’t rosy and that speech and language therapy would be a big part of our lives for years to come. It was hard to know where to start and easy to become overwhelmed by priorities. There were times I really questioned my faith in what I was doing and wondered if we’d ever get to where we were hoping to go.

I did not expect, in my wildest dreams, that 2 and a half years later a speech and language therapist would observe Little Bear in his mainstream classroom and say there was no discernible difference in language skills between himself and his peers and deem him ready for discharge. Yes, his attention and listening skills still mark him out and there are some minor speech errors but his comprehension and expressive language skills are now within the expected range for his age.

This near miraculous improvement is due wholly to one thing: speech and language therapy.

Admittedly our circumstances are unusual: most children with DLD do not have a parent who is a speech and language therapist and able to provide targeted intervention on tap 24/7. Little Bear has essentially undergone an intensive 2 and a half year block of therapy. Strategies have been used by the whole family and are an automatic part of the way we talk with Little Bear, not something we use for just a couple of minutes each day. The key strategies have included: using environmental sounds to capture Little Bear’s interest as a way in to listening to language; reducing our language; modelling of vocabulary, sentence structures and sound patterns; repetition; showing, explaining & checking understanding of complex concepts or new words as well as seizing every possible communication opportunity. We have done some direct work on auditory memory, phonological awareness (initial sounds, syllables, rhyme, blending sounds together) and speech sounds.

I suppose at any one time I have always had a current communication aim in mind, whether it has been a specific language concept or speech sound and I have found ways to weave this into play or our usual day to day lives. I have very rarely, if at all, asked Little Bear to sit at a table and ‘do speech therapy’, it has been a much more holistic and inbuilt approach than that.

Little Bear has also been seen by an NHS speech and language therapist throughout the past 10 months or so. She has taken the lead on sorting out Little Bear’s disordered vowels which have been complex to assess and set goals for. Generally she has started us off with a sound or activity and we have carried it on between sessions.

The NHS therapist has also set language goals for school and has provided them with programmes to carry out, which they have done.

All of these strategies, techniques and approaches have worked. Their effectiveness is inarguable. Yes, the sum total of the input Little Bear has had is massive and yes, me being a speech and language therapist does make things different. However, I truly believe that a similar impact could be gained by providing parents with good quality, strategy based communication training alongside regular sessions with a speech and language therapist, who could do the assessing and target setting bits, as well as providing resources and guidance. Similarly, if speech and language techniques can be embedded into teaching and used holistically as part of the curriculum (not here and there for 10 minutes) that too can be highly effective and impactful.

Little Bear is living and breathing proof of the efficacy of speech and language intervention. Prior to treatment when I’m almost certain that no strategies were in place, he made negligible progress. In fact, on entering pre-school shortly after coming home, Little Bear was assessed as having a delay of more than 2 years in all areas of his development, with speech and language and numeracy being the most delayed areas. Within 2.5 years of therapy, that gap has closed (meaning that Little Bear has essentially made 4.5 years’ worth of progress) and his comprehension and expression now measure within age expectations on standardised assessment.

Speech and Language Therapy works.

Whilst his progress has been phenomenal, I should point out that speech therapy is not a panacea. Little Bear still has DLD and I suspect it will impact him to a greater or lesser degree into adulthood but what therapy has done for him is allowed him to reach his communication potential, despite having DLD. Little Bear still finds it difficult to learn new vocabulary and to figure out the sound patterns in new words but we know what to do and the strategies work. The approaches that we have built into our daily lives will continue as Little Bear is still going to need them and it is imperative we continue to strive for that meeting of full potential. As the demands of the curriculum increase, we might find we need to access formal therapy again and that would be okay too.

I feel extremely proud of Little Bear’s progress and find myself constantly marvelling at the things he can say now. Last week he took part in his second school assembly. He learned more than double the words he managed last time and was able to recite them in front of the school without any prompts at all. The naughty streak in me did notice that other children in his class had to read their lines or forgot them completely (I don’t mean that badly, it’s just he has never been able to keep up with them before, let alone outshine anyone and he’s more than earned his moment of glory). Not only that but he sat really well throughout, no teacher attached to his side like previously, and he spoke loudly and clearly. Several people came to me afterwards to comment on how well he had done, the difference being so stark in comparison to previous public appearances.

I am truly grateful to speech and language therapy for not only giving me a career I love but for unlocking my son.

 

 

I think I had better make some changes to my workshop too. Although people need to see the bleak picture, they also need to see the sunshine over the rainbow picture that can be gained by using the strategies and applying them diligently. Little Bear’s prognosis appeared extremely poor so his progress really is a beacon of hope.

 

 

Jigsaws

I know this seems a slightly strange blog topic but Little Bear has taken a real interest in jigsaws recently and in doing so I have learned a lot about how he learns and how he needs to be taught.

Up until very recently Little Bear has not shown an interest in activities that require sitting still and concentrating, such as jigsaws. He has had lots of other needs in terms of developing his play skills so I haven’t been too concerned. Having a bigger brother who does sometimes (not a lot as he too doesn’t like sitting still) do these types of activity has helped Little Bear a lot though. If Big Bear is doing something, Little Bear generally wants to do it too. As I have got really strict with screen time and have been encouraging Big Bear to find other things to occupy himself one evening he did sit down and start doing a jigsaw. Of course Little Bear was in hot pursuit and got one out for himself too.

I had to intervene as I knew that the one he had chosen was too difficult. We swapped it for a very simple one with 4 large pieces. At that stage, it was too much to ask of him that he try to complete it on his own. Little Bear put the first two pieces he found together, couldn’t make them fit immediately, growled and chucked them across the room. It would have been easy to abandon ship at this point. However, I was feeling particularly resilient that day and decided to persevere. “Come on, you can do it” I cajoled, shifting the pieces about so that two that went together were close to one another. Little Bear managed to put them together with a surreptitious jiggle of the bits from me. I made a big thing of how clever he was. Could he stick another piece on I wondered aloud.

I began to get concerned because he didn’t seem at all able to see that we were making a picture and with only two pieces left there weren’t many options. He would try to put a straight edge into a hole or a corner piece into the middle. Each time he perceived himself to be failing at the task (which happened every few seconds), he would lose his temper and throw the pieces and sometimes break the ones we had already done if I wasn’t quite fast enough. Rather than losing my temper (which would be easy to do if feeling frazzled) it made me even more determined that he should feel success and complete the task. I think at one point he got up to wander off and give up. It was hard to know how far to push him but I knew that he wouldn’t think he could do jigsaws unless he actually did one so I pretty much made him come back and finish it off. I gave a lot of help and short of actually putting the pieces in place for him, heavily scaffolded the task. All the while a part of me wondered if I was placing too much pressure on him as perhaps he actually wasn’t capable of doing it?

However, jigsaw finally completed, we were able to high five, applaud and do lots of bows. Big Bear is always fabulous in these situations and spontaneously joined in with the praise. Now that the marathon of completing one 4 piece jigsaw was over I thought we could tidy up and go to bed. However, to my surprise Little Bear had other ideas. He wanted to do another jigsaw. So off we went again. It wasn’t much easier the second time and Little Bear certainly wasn’t a natural at ‘seeing’ the picture and matching bits together. I thought back to the discussions we’d had with the Educational Psychologist in which he said that Little Bear’s language scores were in advance of his visual skills, a statement that at the time I had felt must be wrong. However, was this the type of thing he meant? I had to agree that what I was seeing was concerning and that without a significant amount of adult support, Little Bear would not be able to complete even a very simple jigsaw at the age of 5.

We persevered and geed on by his previous success Little Bear was pretty determined to complete the next one. That is not to say that he didn’t lose his temper or become easily frustrated but with encouragement and a calm approach and I have to admit, an element of me refusing to allow him to fail at it, we completed another and another and about 5 more. In the end I had to call time on it and put him to bed.

I was astonished when in the morning he wanted to do more still. He got out every jigsaw we own one by one and we painstakingly completed each of them until the playroom floor was covered. I tried to teach him strategies to make it easier e.g. that one has a straight bit. It is an edge. It goes at the side. Or that was has two straight bits. It is a corner. I pointed at similarities between pieces. Look, that one has purple on it too or the cat’s tail is missing, I wonder where it is.

I repeated myself a lot. No matter how much I said it, the task didn’t seem to be getting any easier for Little Bear, not least I suspect because ‘edge’ and ‘corner’ were new words for his vocabulary. But I had to admire his persistence. I don’t think there are many children who would want to keep going and going at something they are finding so hard. I kept the praise level high and despite Little Bear repeatedly saying “I’m rubbish at jigsaws” I tried hard to re-frame that thought and help to show him otherwise. Once the floor was almost entirely covered, he began to admit that he might be The Jigsaw Master.

This was just a couple of weeks ago. Little Bear still likes to get the jigsaws out but now he can complete a 30 piece jigsaw on his own.

Nothing about this situation is as I would have predicted it and it has taught me several things:

Firstly, when Little Bear doesn’t appear to be able to do things, is it because he really can’t or because he doesn’t believe he can? I rather suspect that he often gives up at the first hint of failure as his default position is to assume that he can’t. This leads me to think that sometimes putting a bit more pressure on him to complete a task the first time he encounters it is the right thing to do to show him that he can (with a high level of support of course).

However, it is hard to know which tasks to target and whether it is realistic to expect him to achieve them. Taking a hard approach to tasks that he might not be able to complete would be really damaging.

Secondly, I do feel there was an element of Little Bear having difficulties learning the task. I don’t think he was ever going to spontaneously figure jigsaws out by himself. However, it has shown that with specific teaching he can learn and he can generalise his skills pretty quickly. He needs specific teaching of strategies e.g. he couldn’t notice the similarities between pieces so I had to verbalise things that seemed obvious. Once he has been taught these strategies and there has been a lot of repetition of them, he can apply them well. I suspect this is due to differences in his neural pathways, caused by years of neglect. However, just because he can’t learn something the usual way, doesn’t mean we can’t find a way around it and create a new neural pathway for him.

Thirdly, because of the first and second point, Little Bear can’t really be expected to try new tasks by himself. He needs a grown up by his side to keep him regulated, focused and to give him heaps of positive feedback. I really hope we get the EHCP funding we have applied for as this is the very reason why he needs it.

I have found at home that if I get the support wrong the first time we try a task that can be the end of his engagement with it forever, so good support for new tasks is essential.

I am genuinely shocked at his progress with jigsaws and at what he can do now. The fact that he was so motivated to succeed, despite all the barriers, is nothing short of inspirational. He allowed countless repetitions of the task over the course of a few days which will undoubtedly have cemented his skills much more quickly. He even sat and helped with a huge jigsaw of the world that the 4 of us were working on the other day. It was hard for grown-ups but he now believes he can do jigsaws so wasn’t unduly phased. He did brilliantly and Big Bear got bored before he did.

I am now thinking about what other tasks we could tackle in this way. We have managed it with Maxi Hama beads – we had the same “I can’t do it”, “you do it for me” situation the first time we tried those but by the end of the morning he was pushing my hand away saying “I do it myself”.

I have also noticed that once Little Bear has mastered a task his attention span suddenly increases beyond recognition. His teacher called me in the other day as she was shocked that he had sat on the rug in a corner of the classroom for a whole hour by himself doing jigsaws. They had all been muddled up and he had painstakingly sorted and completed them. She had never seen him concentrate for more than 10 minutes on anything and didn’t know that he could.

This weekend, Little Bear spent several hours making Hama bead creations until he had used every single bead and I had to make a hasty Amazon purchase.

Evidently confidence is playing a huge role in Little Bear’s ability to learn. Little Bear, you really need to believe in yourself as much as I do because what you have achieved so far is nothing short of astounding.

And thank you to the humble jigsaw, who knew I could learn so much from you?!