The Right Eyes

Today, Little Bear has been seen by another psychologist. This came about because the last time we saw an Educational Psychologist, I became very irate and had to resist the strong urge to tell him he didn’t know his arse from his elbow. You may remember this ranty post which tells you all about it: Conversations

Thankfully, the Bear’s school were none too impressed either and volunteered to pay for a private psychologist to ensure a non-biased, useful report. I know that I have moaned at times, about the school, but things have come a long way. I feel a real gratitude towards them that they genuinely care, about Little Bear and us, and that they are willing to be creative and do things differently if that’s what’s required. In these times of dwindling budgets, I’m well aware that many schools wouldn’t have funded such an assessment.

It isn’t just that, but by inviting a knowledgeable stranger into the school, they were laying themselves bare to observation and potential criticism. They took that risk because they want to do the best they can for our son and they are willing to make changes to their practice if advised. There is something about us having these shared vulnerabilities and this shared desire to ensure he reaches his full potential and is as happy as he can be, that makes me a little emotional. I think (I hope) that we have reached that much longed for status of Having A Good Working Relationship. And also Mutual Respect. I hope so, because I do feel like giving them a collective hug.

So, having got the right professional across the threshold, how was it?

Other than the times someone from our post-adoption support service has come into school meetings, this was the first time that somebody with an evident knowledge of trauma and attachment has observed Little Bear and seen what I see. There is a palpable relief in that. It isn’t in my mind; I haven’t concocted his needs; I’m not exaggerating. A knowledgeable stranger has come in and is sitting at the table I have sat at many times before and is observing things and recommending things that I have previously talked about, at that very table. She’s more convincing than me because she’s a psychologist and she certainly couldn’t be accused of being a neurotic mother, but even so, it makes me feel a little vindicated.

It’s refreshing. It’s also reassuring and hopeful. It means that instead of things being okay for Little Bear, maybe there is hope of them being the best they could be. I probably haven’t aimed that high for a while – just hoping we could avoid abject failure. School are willing and keen and they like the Psychologist and she is passionate and full of useful ideas. Surely this is the most hopeful our status has been so far?

I complained in my blog about the incompetent Ed Psych, that I knew more about trauma than he did and I’m sure that’s true. (Incidentally, today’s Psychologist said almost the polar opposite of everything he said. One has to laugh). I’ve written about  Being an Expert Parent and how our children necessitate us being so. I have always been a little reluctant about it though, so when a professional appears who is undoubtedly more knowledgeable than me and more experienced than me and I can learn from them, it’s brilliant. There is a surprising relief in it, that allows me to relax a bit, so I can attend the meeting as a Mum, not some sort of parent/professional hybrid trying to do several things at once. It makes me realise how exhausting navigating such meetings can be and how much of my emotional energy is eaten up week to week, trying to make sure Little Bear has what he needs in every area of his life, unwittingly filling the gaps left by others lacking in knowledge. Perhaps I can relax a little about his education now because between the psychologist and the school, I think they’ve got this.

It also highlights how rarely I’m in a situation with a professional who is knowledgeable enough to give advice about Little Bear’s needs. This shouldn’t be the case – that a professional who is trauma-informed is a rarity. Any professional coming to advise on children with developmental trauma should be suitably trained and aware. It is wrong that we find ourselves in a situation where the only way of getting that expertise is to pay for it, especially as childhood trauma is so prevalent.

Anyhow, with the right eyes on Little Bear, what did we learn?

There are some real positives about how things are currently being done. The Psychologist commented how lovely it was that Little Bear’s teacher and his TA are both willing to be physically affectionate with him and allow him to snuggle close to them. His teacher (a man), calls him ‘mate’ a lot and gives him reassuring pats on the back or arm. In this day and age where figures of authority have to be so careful about touching children, and some establishments have become so wary that they don’t touch children at all instead keeping some kind of unnatural and cold distance, it is heartening that the Bear’s school feel able to react to him naturally and to provide him with the physical comfort/connection he needs.

There are also real positives in terms of a multi-sensory curriculum and learning being fun. Little Bear is largely happy in the classroom and his trusting relationship with both members of staff is evident to a new onlooker. These things are reassuring.

What is more concerning is that Little Bear was not observed to be regulated at any point during the morning-long observation. I’m not surprised though. We achieve periods of regulation at home but that’s because we work really hard at it and we have spent three and half years getting tuned in and figuring out what works. I can see that without a trained eye, it would be difficult to figure out the underlying causes (often linked to Interoception in my opinion). I am still very much trying to untangle Little Bear’s sensory needs and that is with Sensory Integration training under my belt and a lot of time to puzzle. I can fully understand how, without the training or the experience, school would struggle to interpret and manage these aspects of Little Bear’s needs. The good thing is that today’s visit has brought them better understanding and the report will bring many practical suggestions for ‘sensory snacks’ to hopefully improve regulation across the day. I’m excited to read the ideas and maybe steal some for home too.

Little Bear was also observed to be anxious, hyper-vigilant and attachment-seeking in the classroom. Staff were observed to be inconsistent in making Little Bear adhere to the rules and at times punished possible self-regulatory behaviour. The big take home message for school was to ask themselves, ‘what is Little Bear showing us with this behaviour?’ ‘What is he showing us he needs?’ ‘What can we do to make him more comfortable/reduce his anxiety?’ instead of saying, ‘how can we stamp out this unwanted behaviour?’

The take home messages for me were more questions to ask of myself: ‘Are we doing enough to meet Little Bear’s sensory needs?’; ‘Should I get somebody else to assess him in this area?’; ‘Do we make appropriate accommodations for his sensory needs, particularly at mealtimes?’ I do find myself saying “sit down properly” a lot more than I probably should.

We talked a lot about difficulties with executive function and employing strategies to support that, such as visual supports, timers and short sharp bursts of learning, interspersed with sensory snacks. We talked about positive feedback, a proper meet and greet, a better transition for the end of lunchtime and closer supervision if unstructured play is leading to difficulties.

One of the main reasons we initially sought psychological input was due to the upcoming need to re-apply for funding for Little Bear. Today’s Psychologist was strongly of the opinion that Little Bear’s supportive adult should not be removed from him – he needs her support to get going with tasks and frequent check-ins to help him complete them. He cannot learn without adult support currently – an opinion we also hold strongly and one of the key reasons I got so frustrated with the LA Ed Psych who thought we should be working towards independence. The fact that today’s Psychologist independently and without any vested interest, drew this opinion is a great outcome and will hopefully add significant weight to our case for funding. I would love to say I’m not worried about that but I am because there are a few wider things also happening, relating to staffing at school and some problems with our back-up plan, should the funding application be rejected. There is always something to worry about it seems, but, today, I’m going to bed hopeful that now Little Bear has been seen through the right eyes, we might be on the right track to him getting the right support.

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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.

 

Promises, Promises

Here’s a little scenario that happened in our house this week:

Me: It’s bedtime, Little Bear

LB: Aw, can’t I have a bath?

Me: I think we’ve left it a bit late for a bath – you’ve been busy eating your pudding, haven’t you?

LB: Yeah, but I reaaallly want a bath (Hangs off me, bats his big brown eyes at me, pulls his best super cute puppy dog face)

Me: I’m just a bit worried that because it’s late, you’ll find it hard to get out the bath when I ask you to…

LB: I won’t! I PROMISE. I’ll get out straightaway, when you ask me.

Me: Are you sure?

LB: Yes, I PROMISE. Straightaway.

Me: Hmm. Ok then, as long as you’re sure you can do that…

Did he get out the bath, folks, when I asked him to? No. No, he did not. He went under the water to pretend he couldn’t hear me. I gave a countdown (‘we’ll need to get out in 5’ etc.), I reminded him of his promise just before the moment it would be needed, just in case he’d conveniently forgotten. So, he could hear me and he hadn’t forgotten, yet neither did he exit the bath. Once I’d let all the water out and he finally decided he was out of options, he did get out and began calling me names/ telling me he hated me and that I was making him annoyed. It was all rather ironic really, given I had stretched his bedtime for him, made a concession for him and he had reneged on his promise. I mean, yeah, he was totally justified in getting annoyed with me (can you hear me rolling my eyes?!).

Anyway, more fool me, because I should know by now that Little Bear can’t keep his promises. I’ve been pondering on this since and have had a few chats on Twitter about it, as I do (it’s such a good barometer of what is adoption shenanigans and what is just plain shenanigans). There are two things in my mind: why can’t he keep promises and why do I keep giving him the chance to make them in the first place?

My immediate thought about why he can’t stick to them is because at the point of making them, he is fully present and intent on doing what he says he will (I don’t believe he ever sets out to purposefully dupe me) but as he struggles with regulation, when it comes to the point of following through, he isn’t able to control himself enough yet to do so. I imagine there are times he knows he’s letting himself down but can’t help but do it anyway.

Then there is the theory that perhaps it’s an act of self-sabotage. Perhaps he doesn’t feel he deserves a nice bath or a peaceful bedtime and kind of deliberately puts a spanner in the works. This is a sad state of affairs if it’s true. I have tried wondering aloud along similar lines but I can’t tell whether it resonates or not – I suspect it doesn’t because he usually gets quite tearful if we get our wondering right and he certainly wasn’t tearful on this occasion – just combative.

I suppose another theory is that it could be an anxiety-based behaviour. Perhaps the end of the bath triggers something in his mind about the beginning of bedtime and the fact that sleep is soon and sometimes he has bad dreams. Perhaps he is attempting to stave that off by causing an escalation.

Another feeling of mine is that sometimes Little Bear remembers a situation similar to the one he is in and recalls a situation or behaviour that has happened before and for whatever reason is moved to recreate it. We’d certainly had a similarly difficult bath time a week or so before and the following evening from the incident described above also featured a sudden switching and similar behaviour. I can’t really explain why this would happen but there are certainly times when I feel it does.

There could also be an argument for saying that because I had voiced my concern about what could happen in the situation (me trying to be open and honest etc.) I had somehow created a self-fulfilling prophecy. There is certainly a truth in the more Little Bear knows you want him to do something, the less able he seems to do it. He’s pretty oppositional like that.

As if I hadn’t already muddied the waters with enough theories, I have more. Could this behaviour be linked to poor situational understanding/ poor cause and effect? I feel as though I don’t have many of these challenges with Big Bear because it is obvious to him that if he messes me around in this way, I won’t give him similar concessions in the future. However, this type of A + B = C thinking seems challenging for many adopted children. Perhaps Little Bear doesn’t realise he is cutting off his nose to spite his face, as it were? I have started asking him what he thinks might happen if he does such and such, at times. The confounding this is that he is often able to tell me what a logical consequence might be. I can’t tell whether he isn’t bothered so just does the thing anyway or whether there is a disconnect between knowing in theory and changing his behaviour in practise.

A final theory is that demands of any kind make him anxious because they feel as though they are clawing at his need for control (see Control where I’ve written all about that). Someone on Twitter mentioned Pathological Demand Avoidance to me (PDA for short, a sub-diagnosis of Autism) and it is something I’ve turned over in my mind before because Little Bear is undeniably demand avoidant. However, whenever I check out the diagnostic criteria I don’t feel he meets them. There are elements that ring true but I don’t believe Little Bear lies anywhere on the Autistic Spectrum. As with any child who has experienced developmental trauma, I always think it’s essential to consider the impact of that first and foremost. I would love to see a document like the Coventry Grid though, which instead of drawing out the similarities and differences between ASD and attachment, drew out the similarities and differences between PDA and demand avoidance within an attachment/trauma presentation. I think I might e-mail Heather Moran and see what she thinks (why not?).

One of the reasons I don’t feel Little Bear has PDA is because his ability to manage demands fluctuates enormously. Sometimes he can do everything you ask without difficulty. At other times every tiny request is difficult for him. I think a child with true PDA would be much more consistent in their demand avoidance. Little Bear’s behaviour tends to be pretty unpredictable. I know there would be other days when we could have had exactly the same bath time scenario and he would have got out of the bath the second I asked him, like an angel. What is difficult is predicting which days would be like that. If Little Bear is having a day where every demand is a battle, I would never have even considered entering into a promise-based scenario. I would have made sure the rules were really firm and clear and it would have been an early bed.

However, on the particular day in question, everything had been going well. Little Bear had done well at school, eaten his tea, come off his I pad and come upstairs as requested. The stars appeared in alignment so I was sucked in by the promise of a promise. The switch from co-operative to oppositional happened in a nano-second. I have to say that I find this type of scenario difficult. Because I don’t see it coming and because I have already given ground, it is extremely difficult not to feel taken advantage of and really rather annoyed. I coped much better the second night when I was able to anticipate the behaviour I might be confronted with in advance.

So why do I do it? Why do I allow him to get into a making promises situation if I know he might not be able to stick to it? I’ve asked myself this question a lot. Part of it is because I find myself keeping the rules much stricter for Little Bear than for Big Bear and that can feel mean. I let Big Bear stay up late sometimes or negotiate on what order he’s going to do certain tasks in because he has proved over and over that I can trust him to do that. I’d be quick to reign things back in again if I thought he was exploiting me but I have very little need to. However, because Little Bear has more difficulty sticking to promises and has reneged on many, I am less inclined in the first place to give him a chance. I suspect that is with good reason and that with firm, immovable boundaries and rules, he feels safer and happier. I also don’t like putting him in situations with a high risk of failure because in general, that doesn’t do anything helpful for his self-esteem.

There is something about me not trusting him to have a go though: I don’t want him to think I don’t trust him and don’t believe he’s capable of keeping promises. I know that he can (given the right set of circumstances) and I would like him to have a go from time to time and feel successful at it because otherwise he will surely grow up thinking he is a person who can’t stick to their word. He certainly finds it harder, given the myriad possible reasons I’ve cited above, but I don’t believe it’s impossible, and like anything else, I’m sure he’ll get there in the end.

 

 

*Also, how complicated is this adoptive parenting lark? One tiny scenario, a gazillion possible explanations. Maybe he just didn’t feel like getting out the bath?

A Thursday with Little Bear (aged 6 and a half)

Back in May of 2016, when Little Bear was just over 4, I wrote an account of a day we had spent together (you can read it here: A Friday with Little Bear ). Today I was struck by the idea that it might be interesting to do it again – to reflect the progress he has made as well as the types of challenges we experience now he’s a bit older. I’m not 100% sure of the wisdom of this but here we go:

I was woken at about 8am by Grizzly’s alarm and a throbbing headache. The rest of the house was silent. When Grizzly got up (he was working at home) I could hear him speaking to Little Bear who had been up a while but had entertained himself with his I pad. We had a slow start because its half term.

When the boys had had quite enough screen time, I attempted to complete Little Bear’s holiday homework with him. Apparently he is supposed to write a whole side of A4 about what he’s been up to in the break, being sure to include conjunctions, adverbs and expanded noun phrases. In order to make the task slightly less ridiculous for him, I first read him his new social story about making mistakes and then we had a chat and I drew some pictures/ wrote some key words to make the task more visual. It looked like this:

 We began the writing task using the visual to support us. Little Bear did well for the first sentence then quickly lost concentration during the second. He wasn’t keen to say the sentences out loud first which meant he wrote things that didn’t make sense. He quickly became annoyed and threw his pencil across the room. He was able to using a breathing technique when I pointed at his social story and we did manage to complete the second sentence. After that, it seemed wise to take a break.

Little Bear got himself a snack and lay down on the sofa and put the TV on. He stayed there quite a long time while I got ready and did a few jobs. I explained we were going out soon and gave a ten minute then five minute then every minute for about five minutes warnings. When it was time to go, Little Bear refused to turn off the TV or get off the sofa. After some persuasion/ negotiation he switched it off but refused to go for a wee or put on his shoes. I helped him with the shoe part so that we might actually leave the house today.

When he finally got outside, he didn’t want to get into the car.

In the car, Little Bear tried to tell us which songs we were and were not allowed to listen to. I made sure we took turns to choose a song.

When we arrived in town, we met my parents. Little Bear ran over to greet them and measured himself against my mum who has not been blessed with tallness. “I’m bigger than your mum’s boobs now!” he yelled, loud enough for half the town to hear. I don’t even bother to blush or check if anyone is looking any more.

We went into a clothes shop because the boys needed some tracky bottoms and they quite like looking at clothes for themselves sometimes. Little Bear chose some tops with those sequin designs that brush forwards and backwards which kept him busy for a couple of minutes. He was soon running around the store and trying to engage one of us in hide and seek. My Dad took him to the toilet while we paid. We met them at a restaurant but Little Bear had found a piano and my Dad was having some difficulty getting him to come away from it. When he did manage to extricate him, Little Bear found a triangle of landscaping to run up and down and round and round. I said he could have one more circuit then we’d go into the restaurant. He had one more then tried to negotiate for 5 more. He would only come when I started to go into the restaurant.

I had brought an activity book which kept Little Bear fairly busy while we waited for food though he mainly stuck stickers to himself, not the pages. He sat and ate surprisingly well but as soon as the last bite was in his mouth he was up out of his seat and heading for the door. He wasn’t pleased when I asked him to come back and explained not everyone had finished yet. Little Bear began hanging on the back of his chair and jumping around. I took him to the loo for a change of scenery and little walk. On the way back to the table he tried to push me then tried to jump onto me while we were close to people’s tables. I had to crouch down and explain to him (again) how we should/shouldn’t behave in a restaurant. He told me he hated me rather loudly. He sat on me while I was crouching which nearly knocked us both over backwards. I managed to persuade him to wait until we got to the table and then he could sit on my knee. He did and I asked him if he wanted a squeeze. He did and this calmed him a little. We also did some pushing with his hands pushing down on mine. I do try to use a bit of calming sensory input when we’re out and about – sometimes it works, sometimes it doesn’t. This time it bought us a few more minutes for the others to finish their drinks/ pay the bill.

Little Bear didn’t want to put on his coat and shouted at me again. When we got outside, he ran around his triangle again and seemed much happier.

Next stop was the shoe shop. Little Bear loves going there, but only if it ends in new shoes. I kept explaining that it would depend what the lady said and his feet might not have grown –forewarned is sort of forearmed but I rather suspected there would be some fallout if shoes were not needed. Thankfully, they were. Little Bear told the lady he is a year older than his is (purposefully) and did try to control the situation by taking hold of her tablet/moving her seat around/ not letting her put the shoes on his feet. I had to remind him that it was her shop and she was in charge. He tolerated this and did say please and thank you. There was a time when he wouldn’t have spoken to her at all so overall, I was pleased with how it had gone.

We went in two more shops. Little Bear wanted something in each one. He didn’t tolerate me saying ‘no’ too well and told me he hated me a few more times. Outside he saw a balloon on a stick someone had stuck into a flower bed. I asked him not to touch it. He pulled it out of the soil and waved it about. I explained it was dirty and not to touch it. He waved it about some more. I told him to put it back. He waved it about. I got a bit cross and told him off. Little Bear tried to run off. As I took hold of his hand to stop him, he hit me then pressed his nails into my hand as hard as he could.

We went into the library because there was supposed to be an activity on. There wasn’t. Little Bear found a lion statue and sat on it. I explained it wasn’t for sitting on and asked him to get off. He did but shortly got back on. I asked him to get off. He said, “But that baby over there is sitting on one.” I explained the baby was small and he was big and needed to get off. He got off then three seconds later got back on again. I re-iterated the need for good listening and asked him to get off. He did but the next thing I knew he was sitting on it again and a librarian was telling him off.

I told him we were going because the activity wasn’t on so we’d go for some pudding instead. Little Bear didn’t want to leave. There were negotiations. When we were finally going in the right direction, Little Bear saw the security barrier and began climbing it. Every time we are there he does that and every time I explain why I don’t want him to do that. I got a bit stern. Little Bear hit me.

We went past the pet shop and I had to stop Little Bear getting inside a rabbit hutch. Then he fell into step with Big Bear and suddenly hollered, “King Kong’s got massive balls” at the top of his lungs. My patience was really beginning to wear thin at this point.

We went for a drink in a café that has toys. Little Bear was entertained for a while and the grown-ups managed some civilised conversation. After a while, Little Bear announced he wanted to play the piano again. I told him the piano was finished and we were going home. He didn’t want to go home. He began jumping and swinging on the back of his chair. I suggested we go for a wee then home. Little Bear hit me and ran off. When I found him he wouldn’t come. He told me he hated me and it was the worst day ever and I was the worst mum in the whole world. I took him to the loo then when I got back from going myself, my Dad was having a word with him about not kicking the café wall. There were issues leaving the café/ getting his coat on etc.

We finally got into the car. My parents decided they would come to our house for a short time so we both left the same car park to go to the same place but they were slightly ahead of us. “Take over them,” Little Bear demanded. “I can’t,” I said, explaining it wasn’t the right kind of road. He continued asking me to do this and when I wouldn’t got quite upset. “But they will get there before us,” he said, “if you don’t want me to be upset, take over them!” The tears were coming now so I had to calmly explain that it didn’t matter who got there first and that it was my main job as the driver to keep us safe, which meant no overtaking on little roads. I tried to distract him with some singing. Little Bear evidently began to reflect on his behaviour in town and started saying I shouldn’t have bought him any shoes. I tried to empathise that it must be hard if he felt he didn’t deserve them but that even though he hadn’t been totally sensible in town, that could have been because he was tired and despite any behaviour, I still felt he deserved to have new shoes which fitted his feet and I was glad I had bought them for him.

“I bet Grandpa doesn’t even know the way to our house anyway!” he said.

At home, Little Bear asked me if he was allowed to go on his I pad. “Yes”, I said. “Phew,” he said, “That was close, I think I nearly wasn’t.” He sat down with his brother and peace was restored.

At tea time he couldn’t sit still and did everything other than eat.

After tea he played Lego at the table, a game with his Dad and brother and then we played a game altogether. It was lovely. Little Bear understood all the rules and was really sensible. He didn’t mind when he didn’t win.

Little Bear was not especially co-operative for bedtime – I could hear Grizzly having to repeat instructions and giving warnings but when he finally got into bed, he read the whole of his school book because he wanted to, all 20 pages. He shouted for Big Bear and I and we made a big fuss.

Grizzly settled him and came down. We could hear kicking the bed noises and intermittent shouting noises but then he quietened down.

*

In the two years since I last wrote out a day, everything has changed yet nothing has changed. Being out is still harder than being in (in some ways). There are still times when my patience is sorely tested (and surely anybody’s would be?). We are still more visible/ louder/ more inappropriately behaved than other families. There is progress though: regulation is better on the whole and self-regulation is creeping in. There is heaps more verbal communication. Little Bear’s interaction with strangers is more appropriate and his situational understanding is generally good now. He does know what the expectations are, even if he can’t quite manage to stick to them. Little Bear’s anxiety is more obvious because he can express it verbally now – it is less likely to get misinterpreted as bad behaviour. Little Bear can reflect on situations afterwards and can feel very remorseful, in a way that he didn’t used to.

There are good bits and there are bad bits. I don’t worry too much about the less than good bits – they’re par for the course and we’ve got pretty good at taking most things in our stride.*

No matter the behaviour, he’s still gorgeous, just as he is.

 

 

 

*Just off to lie in a darkened room

 

 

 

 

 

Working on Interoception

Back in March I wrote this blog: Interoception   At the time, I promised I would have a go at working on interoception with Little Bear at home and I would report back about how we got on. Another random Twitter chat has prompted me to do that this week so here we are!

I began Mission Interoception by buying this book because I struggled to find any practical information on the internet:

It is quite informative but it is also very expensive for what it is. I was expecting a sturdy text book for the £24 I paid, not a thin novel sized book which I was able to read in one sitting. Although the content is quite helpful, I didn’t find it revelatory. The basic premise of interoception remains the same as I thought before: we need to get children more tuned-in to things that are happening inside of them. In order to do that, we need to get them thinking and talking about what’s inside. A key part of interoceptive therapy seems to be describing how different parts of the body are feeling and this is where we ran into a bit of trouble. Little Bear has well-documented speech and language difficulties and it soon became clear that coming up with lots of different adjectives to describe parts of his body he doesn’t really know are there is fairly challenging. In fairness, if I make myself think of how to describe my stomach for example, when I’m hungry, I’m not sure how many adjectives I can really come up with either. Working on interoception has several pre-requisites I’ve discovered and good language skills are one.

The book gives quite a few different activities to do but they are essentially all just different ways of making a child think about a specific body part (a grown up points at different bits with a light sabre/ you draw a picture of your child & point at different bits of the picture etc.). As with most things, I picked the bits I liked the most or thought would be the most fun or the most practical and we had a go.

The book suggests that a good starting activity is to draw around your child (who will be lying on a large piece of paper – wallpaper or lining paper is ideal), get them to help you mark their different organs on their body map and then talk to them about how different ones feel in turn. We enjoyed the drawing around each other part – I roped Big Bear in too to make it a bit more fun:

 It was at the stage of marking the organs on the map that I realised there was another pre-requisite skill that we were slightly lacking. Your child kind of needs to know what’s inside of them. Not complex anatomy but stomach, lungs, heart, brain, bladder, bowel are all fairly crucial to this. Little Bear seemed to find the drawing around each other part quite overstimulating so between that and not really knowing about the organs, he quickly lost attention for the task. If you were hoping for the kind of blog post where everything goes swimmingly and I resolve my child’s difficulties overnight, you have come to the wrong place.

My conclusion after this was to shelve direct work on interoception for a while so that we could fill in some anatomy blanks. Little Bear’s birthday was around this time and always wanting to get something a bit educational in amongst the fun stuff I had got him this:

 I found this a much better way to think about insides with Little Bear. The model is good because you can take the transparent plastic ‘skin’ off then ‘dissect’ the man with the tools provided. There is a labelled sheet with blank spaces for you to match the 3D organs up with their pictures. It felt quite a bit more rock’n’roll than drawing on the paper which meant it grabbed my boys’ attention more and they engaged with it better. Over time I linked the items they were removing from the unfortunate plastic man to their own body parts. Sometimes I would hold a bit up and ask if anyone knew where it was on their own bodies. We began to talk about what the bits did and how they worked. We re-visited this task every so often to re-inforce the information.

 Alongside this, the book I bought advocates working on interoception ‘on the fly’ i.e. just at random while out and about, not solely during an interoception task. It also suggests trying to apply interoceptive learning at points of dysregulation, though it points out this is difficult. I realised I was guilty of identifying out loud that Little Bear was hungry or needed the toilet but I wasn’t really arming him with the skills to identify this himself. I tried to add in a bit of interoception on the fly at these points. For example, I might say, “We need to get up now; its breakfast time. How is your tummy feeling?” Little Bear might struggle with the vocabulary so I would sometimes give him a choice of possible descriptions e.g. is it full or empty? If his tummy rumbled, that was brilliant and an opportunity I tried to seize. The first time I tried it, I said, “What was that noise?” and Little Bear very earnestly replied that it was a bear. I suspect he knew full-well what it was but it is possible, with my interoception hat on, that he couldn’t identify that the noise was coming from inside of him.

Over the last months I have tried to tune him into these little signals, as well as things like how his behaviour changes when he needs the loo or is hungry. I describe the changes I see to him and try to get him to feel them e.g. “You are talking really fast and jiggling up and down. I wonder if that could be because you need the toilet? How is your bladder/bowel feeling?” I might put my finger on his tummy to help him focus on the right place.

I think the most significant thing we can now (sometimes) manage is getting Little Bear to pause, even for a few seconds, to consider his body. I can’t pretend it works every time or that when he pauses he can read the signals but certainly sometimes he is now able to stop and try to tune in. This doesn’t sound like much but I think that interoception is something that takes a long time to change. We are chipping away at it and maybe in a year’s time I’ll notice bigger changes.

One thing that has changed is that Little Bear has become aware of his heart and how fast his heart is beating. We haven’t targeted this directly so I do think it’s a sign of improved overall interoception. The fact that Little Bear is able to lie still and be quiet enough to notice his own heart beat feels like a positive step in the right direction. He can use his breathing to slow it down and notices when it speeds up, neither of which he could do before. He seems to have gained this awareness by himself, perhaps as a result of being more aware of where his heart is and what it does. I have seized on this where possible to link the changes in his heart rate with his feelings/emotions, especially when he feels angry. I have explained why I encourage him to do his ‘Ronaldo breathing’ at these points.

A couple of times, Little Bear has been getting grumpy and heading for meltdown when he has managed to say, “Mum, I think I’m grumpy because I’m hungry”. This is brilliant and obviously I have fed him straight away. It’s far from consistent though and I would say that the majority of the time it is still down to Grizzly or I to interpret his behaviour to figure out things like hunger or needing the loo.

With regards toileting, this is the area we have had least success with in terms of interoception. The majority of the time Little Bear doesn’t seem to know he needs a wee until he is wet and then sometimes he isn’t always aware. This is the area that would make the biggest difference to him but I wonder if there is a hierarchy within interoception, with some body parts being more difficult to tune into than others.

Overall, I would say we are making progress but it is slow and steady. I guess it might be quicker if I chose to focus all my efforts on interoception for a 6 week period and did a little every day. It is hard to give it that level of focus though when we have so many other areas that also require our attention.

On a related but slightly tangential note, I have noticed significant improvements in Little Bear’s sensory seeking behaviours recently. I suspect it is since he has had his Our Gym Bar Invention. Initially he used it all the time, for lengthy periods – mainly hanging upside down – but he rarely uses it now. I wonder whether he has had sufficient proprioceptive and vestibular stimulation that he has been able to re-organise those brain systems. It was particularly noticeable during the summer holidays because there were quite a lot of days when he didn’t do any vigorous exercise, just walking, and he was absolutely fine. That could never have happened even a few months ago. Every day he needed a good run around or swim or bike ride or to climb something or we would have been in for trouble. I can genuinely say that has changed which fills me with hope that sensory diets do work. We still see dysregulation but it’s less physical than it was.

My belief is that interoceptive work will be effective too but it’s a long game. Perhaps if I’m still blogging in a year’s time I could give you another update then.

 

 

 

 

 

 

 

 

 

Negative Role Models

Yesterday I did a stupid thing. I took the boys to a party. I know that doesn’t initially sound particularly foolhardy but it was. A party on a Friday night, after a week of school, with a class full of exhausted 6 year olds is undeniably a bad idea. When it also involves staying out beyond Little Bear’s bedtime it is an even worse plan. What was I thinking? Fool.

The thing is that we have become notorious party avoiders. We say no to them all. We have reached a place of comfortably attending family parties or gatherings at people’s house when we know them well but parties involving Little Bear’s classmates are tantamount to torture for me. I hate them every single time. However, now and again, the parent guilt takes over and I feel I ought to let Little Bear try again. Last night was one such occasion. It was an outdoor party involving pond dipping and den building so I thought it might be ok. Surely it would be less stressful than 30 children fuelled up with sugar and charging manically around a village hall, trying to beat three shades of purple out of each other? Surely? Please…

I have to clarify that the reason I can’t bear these parties is not necessarily down to Little Bear and his behaviour. There have been times when the party situation has got too stimulating for him and he has ended up dysregulated and out of control. I have not enjoyed those times, feeling exposed and stressed. I am fairly keen to avoid putting him into those situations, hence carefully choosing which parties might be do-able and actively avoiding the others. However, over time, I’m realising that Little Bears ability to cope is improving and largely he does very well. It is his classmates and their interaction with Little Bear that really winds me up.

Unfortunately (for them) I do not seem to be very tolerant of the less than angelic behaviour of other people’s children. I am well aware of the limitations of Little Bear’s behaviour. I am not somebody who thinks their child is perfectly behaved when they are clearly not. I think if anything I’m a bit too aware of the times he doesn’t comply or doesn’t stay sat down and is running around or swinging from something when he shouldn’t be. However, I am also only too aware that Little Bear has very real and justifiable reasons behind his behaviour. Neglect, sensory needs, communication needs and difficulties with behavioural and emotional regulation all play their part. Whilst I have a good understanding of his needs and the reasons behind them, I do not allow us to become complacent or allow inappropriate behaviours to continue due to his background. I know that we still need to work on the areas he struggles with; we need to work on them much more than if he hadn’t had an adverse start in life. Obviously I try to approach his behaviour therapeutically and we work at a pace that Little Bear is capable of working at. If he isn’t able to sit still for as long as his peers, so be it. All I ask is he tries his best and I try my best to support him.

Little Bear, with our support, has consequently worked extremely hard. We have provided strategies, empathy, consistent boundaries, heaps of praise and encouragement, orchestrated situations to experience success, done a lot of wondering and tried to meet Little Bear in his inner world to forge a way forward together. Little Bear has listened, talked, reflected and worked his tiny little backside off to overcome his impulsive urges, to learn to regulate himself and to behave as best he can. He tries harder than most children have to every day and I knew, before we even arrived, that a party on a Friday night would be extremely testing for him.

It therefore really pisses me off when other children try to purposefully lead him astray; when they do not appear to try to behave as best they can and to be honest, are downright rude and obnoxious.

Some parents just dropped off their little darlings, something I wouldn’t consider doing because I know Little Bear needs close supervision and it wouldn’t be fair on him not to provide it. It resulted in a group of 12 or so kids going pond dipping with a ranger and a few of us parents who had been unwittingly conned into trying to keep control/ preventing anyone from drowning.

When I explain to someone else’s child that pond dipping has finished and the Ranger wants them to put the net down, I don’t expect them to step over the barrier anyway and tell me to “get wrecked”. I don’t expect them to put a crisp packet in the pond when I’ve explained why they shouldn’t. But what really blooming annoys me more than anything is that whilst Little Bear is toiling under the weight of expectation to behave appropriately, his peers, who have not experienced the traumatic start in life he has, are not acting as the good role models he really needs. In fact, the very last thing Little Bear needs is the modelling of rude and out of control behaviour.

As we navigated the walk to den-building, along the side of a huge expanse of open water, the ranger was specific in giving two rules: no running and stay behind him. His communication was very clear and he checked back with the children to make sure they had understood. I knew Little Bear would struggle not to run because in an open space running is his default. However, try he did. Another little boy, I’ll call him Callum, decided he did want to run. He wanted to run in circles around Little Bear and jostle him. When Little Bear still did not run, he smacked him on the bottom. Wanting to nip things in the bud I asked Little Bear to come to me. “But I haven’t done anything wrong”, he said looking crestfallen. “No, you haven’t”, I reassured him. “You are being very sensible but Callum is not. If you stay near Callum you might get into trouble but if you stay here you can show the other children how to behave”. Little Bear, miraculously, walked sensibly beside me and I praised him regularly. How ironic, given all his challenges, that he was now being a role model.

Callum continued to run about. At one point he came behind Little Bear and threatened to smack him again, even though I was about a foot away, glaring right at him.

I continued to get increasingly irate as certain children back-chatted the grown-ups, ignored instructions and generally did whatever they fancied, including running up and down the tops of picnic benches or breaking bits off trees. Towards the end, an informal football game broke out amongst some of the boys. I could tell it was getting a little out of hand and was keen to leave but Big Bear was in the other group of children and not back from pond dipping yet, so I had to just keep a close eye instead. I noticed that every time it was Little Bear’s turn for a throw-in, Callum tried to take the ball off him, to the point of wrestling him to the ground. Little Bear is tough and was not keen to let go. Callum continued to target and goad him. Little Bear got more and more annoyed with it and began to retaliate. When he got angry, Callum laughed and provoked him more.

Part of me wanted Little Bear to punch Callum in the face because he was surely asking for it but Little Bear did not because he has worked really hard at not solving problems with his hands. We have taught him to behave better than that but what I was observing suggested his more restrained behaviour was putting him at a social disadvantage, something which I couldn’t stomach. After another incident of targeted ball-wrestling (and I could tell it was uncalled for because some of the other children began to speak up for Little Bear), I snapped. Why should Little Bear have to contend with this? He is working really hard, despite enormous provocation, to behave himself on a Friday night, after a hard week at school, after his bedtime. Callum, however, who has no excuse whatsoever for his behaviour is blatantly doing whatever he likes and as his parents are notably absent, I take it upon myself to have a little word. Little Bear was doing his bit in trying his utmost to regulate his behaviour and I would do mine in showing him I have his back, no matter what.

I’m not sure Callum enjoyed the conversation but he certainly started behaving better.

Rightly or wrongly I used the behaviour of some of the children as a talking point on the way home. I talked about how some of the other children had not behaved well and specified what they had done wrong. I told Little Bear how proud I was of him for not being sucked into that behaviour himself and empathised with how hard it must have been for him to resist. I feel he has endured enough time being labelled as the ‘naughty one’ in class and it is important for his self-esteem that he succeeds as being the ‘better behaved one’ where he can.

Although we were able to turn a negative into a positive on this occasion, I think we are back to party avoiding. I just don’t see the enjoyment of putting Little Bear into such a negative and challenging environment with such poor role models. It certainly doesn’t do my blood pressure any good either. I just hope that at school, the rules and the teachers keep these things a bit more in check.

Some of the other parents who know me a little have come to anticipate my rising stress levels at parties and find it quite amusing. I suspect they wonder why I can’t be more laid-back about it and just let kids be kids, but I can’t. We have worked too hard. Little Bear has had to overcome so much and I cannot stand by and allow him to be purposefully undermined and exploited by those who are wilier. Bruce Perry says, “Research has consistently found that surrounding a child with other troubled peers only tends to escalate bad behaviour”. Whilst I don’t believe these children are ‘troubled’ they are certainly not good role models and I am not keen on Little Bear being surrounded by them at the present time. I would much prefer to fill his life with positive role models who he can learn from and aspire to being like; the kind of children that he is slowly but surely maturing into himself.

Unwanted Changes

Things have been going really well for a few weeks here. That way where you begin to think you might have cracked it and that having no specific difficulties is the new normal way of life. I wasn’t getting complacent about it; if anything it was making me feel a bit uncomfortable and suspicious, not because I want to have difficulties but because it seemed a bit too good to be true. About a day after having that thought, some problems predictably began to arise. I don’t think it is anything major at this stage, hopefully not, but we are at the point of thinking Little Bear’s behaviour might be escalating and we are keeping a close eye on what’s going on.

There are two issues, both school based. At the start of the school year we had some School Worries and then various things happened to resolve them (see Alleviating School Worries). Since then there have been niggles but generally an upward trajectory with Little Bear and Mrs C, his TA, getting to know one another better. Over the past two months or so I would say they have got into their groove. Little Bear feels safe with Mrs. C; he listens to her and accepts her authority. Mrs. C has come to understand Little Bear and what he needs and how to help him. Consequently Little Bear’s behaviour has been very settled and he has made fabulous progress. We have been very pleased with how everything has been going.

Unfortunately, Mrs. C is now experiencing some personal issues; a member of her family is very poorly and understandably she needs to take time out to care for them. She is still coming in most days but sometimes only helping Little Bear for an hour before leaving. Obviously I know it can’t be helped and I really feel for her, having been through it all last year with Supergran, but at the same time, with my parent hat on, I’m a bit gutted. Consistency is so important for children who struggle with attachment and trauma. It has taken a long time for this relationship to be properly established and just as things have settled seems an unlucky time for disruption to happen. Mrs. C is Little Bear’s safety net at school now. He knows she is there to help him and without her I suspect he is a little lost.

We are lucky in that Little Bear has made good progress and can now cope with a bit less support and still get some work done, where he couldn’t have managed to earlier in the term and would have become very disruptive. However, we are all too aware that things can escalate quickly when much needed support is taken away. We are keeping an extra close eye on how Little Bear is and checking in with his teacher more frequently.

The school are not currently covering Mrs C’s time when she isn’t there as it likely to be a short term situation but we are concerned that they may need to if Little Bear shows us he isn’t coping.

When I picked Little Bear up yesterday he appeared dyregulated and really struggled to listen on the way home. He did daft things like hide in someone else’s front garden and tried to put a Hula Hoop in his ear that he would not normally do these days. Could this deterioration in behaviour be a sign he isn’t coping quite so well as we thought?

Well, it could, but equally it could be due to the other school issue that we are also concerned about. For some reason that I can’t fathom, the school have changed the entire dinner menu. They have changed it on the premise of it becoming healthier. In practise, they have removed all carbohydrates. Cauliflower rice or celeriac mash anyone?

I’m all for healthy eating and children having their vegetables, of course I am, but I do think this menu has gone about three steps too far. Little Bear loved buying some toast at break time and I always encouraged it because he gets very hungry and I felt it was regulating for him. I am sure there is some evidence about children who have experienced trauma needing more fuel because they expend so much energy trying to stay within their window of tolerance (if anyone knows what I’m on about please point me in the right direction). I also think Little Bear has to work harder due to his Developmental Language Disorder, another reason to keep his energy levels up.

Anyway, needless to say he can’t buy toast anymore because bread is the food of the devil or some such nonsense.

The lunchtime menu now has one choice only so I guess you eat it or you don’t. Previously there were always two choices and personally I feel there still should be – aren’t children allowed to have preferences? My feeling about the food now is that it would probably be delicious for me, a grown up with developed taste buds, who is conscious of my waistline but either I have failed as a parent or my children are lacking in some way as they are very unlikely to eat it. I don’t know many children who would eat harissa lamb or Greek salad or greek yoghurt and berries for every pudding, to be honest. Apparently they have done it on purpose to get the children tasting more things.

The thing is I feel as though they have misunderstood the function of a school lunch. In my eyes yes, it should be as healthy and fresh as possible, but it should be appealing to most children because the most important thing is that they eat it, fill their tummies and are able to approach the afternoon well-regulated and able to concentrate. I think that pushing boundaries and trying things can happen at home or during special events at school but the last thing I want is for Little Bear to push his posh nosh round his plate, not eat any of it and spend the afternoon swinging from the lampshades. Being well-fed is crucial for Little Bear’s behaviour regulation. If he is hungry he will not be able to control himself and he certainly won’t be able to learn.

I feel as though the school has inadvertently created a very exclusive menu which will inevitably exclude many children. There has been no consideration for children who may have restricted diets due to underlying conditions such as Autism or children who have had limited life experiences. Before Little Bear came to us, he didn’t eat any vegetables and perhaps only one or two fruits. The fact that he will happily eat a range now feels like a success to me; I don’t feel the need to push him beyond his comfort zone and I don’t appreciate the inference that my child (or my parenting) is somehow lacking by him not wanting to eat anything on the exclusive school menu. I feel as though it has somehow become an elitist basis on which to separate the parents – those who have succeeded in getting their children to eat like grown-ups and those who haven’t. Bring back jacket potatoes and roast dinners I say, are they really that detrimental to our children’s health?

As an aside, the children are no longer allowed to bring a cake in when it’s their birthday either which I find very sad. I know we are meant to be concerned about childhood obesity but neither of my boys sits still and Little Bear has a six pack to be jealous of. I think he can eat a slice of cake now and again without any of us getting too concerned.

Anyway, menu-related rant aside, I am mainly concerned about Little Bear’s wellbeing and him pushing his friends about and trying to shove crisps into his ears could well be due to hangry-ness. Little Bear not eating his lunch could well be a disaster and could easily lead to an escalation in his behaviour. I am trying to keep a close check on whether he is eating at school, though it is proving difficult as, according to him, yesterday’s lunch was soup and porridge which even by the new menu’s standard seems unlikely.

I know change is unavoidable but on this occasion I really wish they’d left things well alone. For our children, those who have been through enough already, small things can be big things and medium-sized things like not having your trusted adult or being expected to survive a day without carbs can be enough to upset their wagons completely. Here’s hoping this is just a small bump in the road and not the next dip on the rollercoaster.

Sensory trial and error

One of the biggest priorities at our house these days is helping Little Bear with his regulation. It has always been an issue but I think because other things have settled down, it has come more to the fore. I have been experimenting with various sensory hacks to see what works and which ones we can use routinely to improve things in our daily lives. Here are some things we have recently tried and how we have got on:

Regulation at the table

Little Bear has always struggled with sitting still. He’s fine on a sofa and can sit for quite a while but finds sitting at the kitchen table for mealtimes particularly tricky. He is better on our wooden bench than on any of the chairs but still tends to kneel up and change position a lot and get down a lot. I have been trying to engage Little Bear in his own regulation more so I recently asked him why he moves about so much. I had no idea if he’d have enough insight to be able to tell me but it seemed worth a try. He said he didn’t like being too low down. We then experimented with putting various items on the bench to make him higher and a bit more comfortable. Several were no good or too unstable but in the end we settled on a beanbag. We can tuck it through the gap in the back of the bench so it stays in place and Little Bear has given it his seal of approval.

I have to say it has been pretty miraculous in its efficacy. Little Bear is certainly able to sit still for much longer with it and doesn’t change his position half as much. Crucially Little Bear prefers it and goes looking for it if I have taken it off the bench for any reason. My feeling is that children will show us when we are getting the sensory input right for them and this hack is ticking all the boxes. I have been considering a wiggle and sit cushion for a while but I don’t think we need one, the beanbag is perfect.

Regulation when out and about

This is the biggest challenge for us and one I would really like to come up with a solution for. We generally notice Little Bear’s difficulties with regulation when we go on a day trip somewhere or go somewhere new. I guess there might be an element of anxiety underlying the behaviour and we certainly feel Interoception has an impact. We are continuing to work on that but it is not a quick fix and I don’t think we are ready to feedback about how it’s all going just yet (but I will when we’ve made more headway). In the meantime, we have been experimenting with things that help in the instant of dysregulation, while we are waiting for longer term solutions to work.

If we are having a dysregulated day out, Little Bear continually seeks movement, which can be unsafe depending where we are. Often we let him run where we can or swing or climb to his heart’s content. I realised on a recent day out though that all the movement doesn’t actually seem to help, if anything, it gets Little Bear more and more dysregulated. Therefore I hypothesised; we needed to add in more calming elements, rather than encouraging the seeking elements.

I remembered that we used to use a rucksack for that purpose so we have re-introduced it. On the first attempt it didn’t go particularly well as the straps were a bit loose and kept coming down Little Bear’s shoulders which annoyed him. The next time we tried a different bag which has a little chest clip to keep it in place. It was a mixed outcome. We could certainly tell the difference in Little Bear’s behaviour – the weighted bag did calm him and stopped the running and swinging almost completely. I would say this was a fabulous outcome apart from one crucial factor: Little Bear doesn’t like wearing it. I don’t want him to think it’s a punishment of some sort and the fact he doesn’t like it makes me think we haven’t quite got it right sensory-wise. I suppose we need to experiment with the weight of the bag; how long he wears it for etc. I know that when I was taught about weighted blankets, the rule of thumb was always to remove them after 20 minutes as otherwise the body modulates to the weight being there and the effects cease. However I have played around a bit with just letting Little Bear wear the bag for a bit then taking it off but I feel as though the effect goes with the bag and as soon as it goes, he’s back to seeking movement again.

I also wonder if there is another way to give him ongoing proprioceptive input that doesn’t involve wearing a bag? I know you can get pressure jackets but I feel as though he would be too hot. Please make suggestions if you have any as we are certainly in the market for trying something else.

Regulation at bedtime

Little Bear has one of those heavy cuddly toys that is filled with sand, I think it’s a large newt and I have been experimenting with that lying on him to help him calm at bedtime. Again I would say it works a little but then he chucks it on the floor!

In the winter if Little Bear can’t get to sleep, we have a heavy knitted blanket that he sometimes likes me to put over the duvet on top of him which works well. It is generally the sensory approaches that Little Bear is collaborative in that work the best. He will tell me when he does or doesn’t want the blanket and I assume that relates to when he does or doesn’t need it.

I have noticed recently that he has a big fluffy blanket on his bed at the moment and he likes to get all cosy inside that, especially if he hasn’t got his top on. I feel as though it would be quite an unpleasant sensation but it obviously works for him. Looking at how children self-soothe can be a key way of discovering sensory hacks that work. Little Bear still has comfort blankets in bed. They are muslin squares and it is the label that he likes – he strokes his lips with it which seems to soothe and calm him. I can’t think of anything worse and he often tests it out on me knowing full-well that it will make me squeal in discomfort. I suppose it’s a good way into talking about how everyone’s sensory needs are different!

I am now wondering whether proprioception is the best avenue for calming for Little Bear or whether the right kind of tactile stimulation would work better for him. How would we go about providing that whilst walking around a zoo or museum I wonder?

This has definitely been a post with more questions than answers (apart from beanbags, they are an answer) so I apologise for that but if anyone has any clever solutions I’d love to hear them.

Our Gym Bar Invention

You know your child has some sensory needs when you have one of these in your house:

 

 It is not exactly an off-the-shelf product; it is several products that we have combined to create a gym for Little Bear. The basic product is a Pull Up Mate pull-up bar. We got that first because Little Bear was spending quite a lot of time hanging from things. There are not many things in your average household that are safe to hang from though and he tended to resort to the side of his cabin bed which we weren’t too keen on. We decided a free-standing pull-up bar would be safer and we chose this one because it seemed the sturdiest available.

The bar is height-adjustable and we started off with it being half the size it is in the pictures. Little Bear loved it and soon came up with several different moves: hanging, swinging, doing roly-polys in the air, hanging vertically upside down, hanging from the bar like a sloth and moving hand over hand along it, from one side of it to the other. I guess all the moves were giving him both proprioceptive and vestibular feedback, which he seeks.

The only thing I had to be careful of was that Little Bear couldn’t identify when he was getting tired or had satisfied his sensory needs and would just keeping swinging and hanging for ages and ages, tipping himself into over-stimulated territory (see Interoception for more on why this might have been happening). To begin with he would get more and more excited and he would need one of us to tell him to stop and do something else. I do think that has improved with time though and although we do still need to step-in, Little Bear is getting better at identifying when he needs to stop. He is also calmer when he is on the gym and is now using it more functionally to regulate himself. We’ve noticed that when he is generally dysregulated, there are fewer times when he prowls about the house looking for trouble. Now, he tends to go to his gym instead which is certainly preferable.

When it was Little Bear’s birthday we didn’t really know what to get him so we ended up getting some additional bits and bobs to make his gym more exciting. In order for that to work we had to make it full height. We have added a rope ladder, which could be tied onto the bottom bar but Little Bear likes it loose; two hoops and a swing.

 It is fair to say it made his day and was a better present for him than a traditional toy. He quickly invented some new moves including climbing up the frame itself in a star fish shape and then jumping to hold onto the top bar. I frequently have to close my eyes because he does things you would never think possible and even Grizzly gets a bit of a fright sometimes. However he is very lithe and strong and these things seem to come naturally. He is very good at having enough points of contact and at landing safely.

Little Bear also likes to climb up and through the ladder; to do roly-polys on the hoops; turn himself upside down from the hoops and create sequences of moves from one piece of apparatus to another. He often challenges the rest of us to copy his moves but none of us are capable!

When other children visit they are very attracted to the gym too but it is definitely quite over-stimulating for Little Bear if there is more than just him on it (its fine if Big Bear plays).

Another crucial addition with the birthday package was the crash mat, for obvious reasons! It’s one of the fold up gym ones – there is a lot of choice on Amazon. Little Bear also likes this as a place to have a little lie down, I found him there watching TV the other day.

The only other safety factor to consider is the weight of the child using the gym. The pull-up bar itself is suitable for adults up to 110kg but obviously it isn’t really designed for people swinging around on it. Little Bear doesn’t weigh much so it copes with him fine but it does tip a little if Big Bear goes on the swing or ladder. We are going to add some tent weights to the bottom bars for a bit of extra stability but in general I do think the whole thing is more suited to someone on the lighter end of the scale.

Although it looks like a thing of torture and is not what you would expect to find in someone’s conservatory, we are very pleased with it as a purchase. It wouldn’t be for everyone and it does take up quite a bit of space but I wanted to share what can be done. We had been looking at these types of thing (see below) but they are huge and I don’t really know who could accommodate one in their house whereas our smaller DIY attempt works well for Little Bear and would be equally as good outside during the summer.

The whole process has made us realise how talented Little Bear is in the gymnastic department. He doesn’t currently attend lessons as he would struggle with waiting to take his turn and with listening. I’d be interested to hear if anyone has tried 1:1 gym lessons or anything similar that we should consider.

 

 

Pets, Children & Why We’re Not Getting a Dog

We keep thinking about getting a dog. We have favourite dog breeds and have even thought about dog names. We are not getting one though, unless I actually want to have a nervous breakdown, which I don’t, so we are not getting one. Not in the foreseeable future anyhow.

It is not as though we haven’t got any pets. We have two cats, outside fish, inside fish and up until fairly recently we had three hens (they got old, don’t worry, it isn’t a grizzly fox story).

The cats are good pets for Little Bear. The cats are quite straightforward with clear boundaries; if they are happy they show you with purring, if they’re not they show you with a scratch. They literally never get over-excited, I don’t think cats can be bothered, and if Little Bear is too rough or over-exuberant with them, they either walk away or give him a nip. Obviously I don’t want him to be nipped or scratched but it is a natural consequence of not treating the cat properly and has led to him being very gentle with them. He has learned that if he is nice to the cats, they will reward him with cuddles and sleep on his bed. Whenever that happens I always tell Little Bear how much they love him, otherwise they wouldn’t want to be in his bedroom or on his bed and that makes him feel good.

Little Bear has started to get involved with feeding them and knows when they’re hungry. He is also good at keeping them company on the way to the vets. He is less pleased when the little cat goes on a killing spree and brings all sorts of half-maimed creatures into the house but he has helped to catch a live mouse on more than one occasion and has also tidied up dead birds (I don’t make him do that, obviously, but he likes to help). The cats have taught both boys a lot about life, nature and responsibility.

The fish are quite entertaining to look at but I have to admit they are the least exciting of all our pets for children. Little Bear enjoyed building the pond though and enjoyed keeping it ice-free over the cold spell we just had. He likes to feed the inside and outside fish and helps to clean out the tank. Pets definitely provide opportunities for helping and feeling successful.

Our hens have been our most fear-inducing pets, though only ever in other people’s children, not in our own. It has always been a bit of a surprise to folk when they have come across them in our back garden as we live in a typical cul-de-sac, with a not-very-big garden and you don’t really expect to find them there. We have fenced off part of the garden at the side and the hens are generally free range in that bit. Children have to go in there to get to the trampoline though which is what causes the consternation.

We already had the hens when Little Bear came home and he was pretty interested in them from the beginning. I have some lovely photos of him holding one of them and also him inside the hen house with them all outside! I was pretty impressed with him that at the age of three he was brave enough to get hold off one (they were friendly but you did risk a whip from a wing if you didn’t hold them firmly enough). The look on his little face of pride and happiness is just lovely.

Little Bear has learned quite a lot from the hens. When he first arrived I don’t think he’d ever seen an egg before and he certainly didn’t know that hens lay them. The first time he was left alone with the freshly laid eggs, he threw them all on the ground and trampled them. I often talk about the incident in my workshops and I genuinely think it was because he didn’t understand the context. He didn’t understand that the hens had laid the eggs, that we could take them inside and cook them or that we could eat them. I think he just thought “they look interesting” and explored them on a sensory level.

Funnily enough Little Bear is a good little helper in the kitchen these days and whenever we are baking or making pancakes, he is always in charge of the egg part.

Little Bear has always enjoyed a practical task and would often help Grizzly to hose out the hen house or to re-fill the feed or water or just give the hens some treats. Our last hen, Yoko, recently became poorly and it was obvious she was going to die. It was during the Beast From The East so we brought her inside and she sat in a washing up bowl by the back door for several days while we gave her ‘end of life care’ (the poor thing had lost her ability to move about). Both boys were good at sitting with her and stroking her. Big Bear even suggested she might want to watch You-Tube on his I Pad!

I think that having her inside and letting her go naturally was helpful for the boys who could get a bit used to what was happening and were not shocked when she did die (though the three of us did stand there for quite some time staring at her, trying to decide whether she was breathing or not. It’s harder to tell than you’d think!).

Having pets has certainly brought another dimension to our lives and I do think the boys have gained from it. They have developed empathy, caring and the practical ability to look after something.

I could see us with a dog: I could see the boys would get a lot from one too. Only we just can’t get one. It’s a bad idea.

Little Bear LOVES dogs. I don’t think I’ve ever met a child who loves dogs quite as much as him. When he was smaller he would just run at them, whether he knew them or not and would be desperate to get his hands on them. We have had A LOT of chats about not knowing whether dogs are friendly or not and that you must ask their owner first before you can touch them. Little Bear has learned the rule well but it has not stopped him from gate-crashing stranger’s picnics to make a furry friend or trying to wrestle a lead from someone so he can walk their dog. Once, we were in the country park near to home and I happened to turn around just at the instant Little Bear had over exuberantly scooped up a Dachshund and was dangling it face first above the ground, the poor thing no doubt scared out of its wits. Another time we met a Chow Chow on the high street and within three seconds of being acquainted with it, Little Bear popped his hand in its mouth, probably as he was intrigued by its dark tongue. Dark tongue or no, you can’t go round sticking your hand into random dog’s mouths.

My brother has a dog. She is only about a year old, massive and EXTREMELY bouncy. She is a Tigger of a dog. She is very friendly and has no malice in her whatsoever. She never growls and loves the children. However, and it’s a big however, she has some issues with regulation. She basically can’t regulate herself and hence can be poor at listening, unruly and very, very excitable.

Before we go to see the dog, Little Bear and I always have a little chat. I remind him that if he runs and jumps at her, she will jump up at him. I remind him that if he wants her to be calm, he needs to be quiet and calm and move about slowly. Little Bear knows all this and can tell me the rules. I believe he has every intention of sticking to them.

When we arrive, the dog will be beside herself because some new people have appeared and not only that but some of them are tiny people and that’s way more exciting. Her tail will be wagging with such vigour that she’s knocking things over and she will be being held by her grown-ups to stop her from jumping at everyone’s faces. As she is considerably bigger than Little Bear on her hind legs there is a very real possibility that she will knock him flying. Little Bear doesn’t mind one jot and is just as keen to get to her. What usually ensues is a tangle of human and dog, lots of licks and possibly an accidental scratch.

Already, Little Bear has forgotten the rules. Then mayhem breaks out. The more times the dog licks him or stands on him or knocks him over, the more excited Little Bear gets. The more excited and loud and fast Little Bear gets, the more excited the dog gets so the more she leaps about like a lamb and the more Little Bear laughs and falls over, the more the dog tries to bury under him and the more it tickles and the more he laughs. The dog and the boy reach fever pitch within the first 5 minutes of meeting each other.

Now, if that lasted for half an hour and then everybody calmed down I could deal with it. But it doesn’t. You wouldn’t think it humanly possibly but Little Bear at least, remains at fever pitch the entire time he is with the dog. We once managed 24 whole hours at my brother’s house before Grizzly and I couldn’t bear the dysregulation any longer. People say, “but they’d get used to each other, they’d calm down after a bit” but they wouldn’t. Little Bear doesn’t get any calmer and Grizzly and I find it really hard because what everyone is seeing is Little Bear at his worst. He is completely out of control. He has lost his ability to listen and he cannot be controlled either by us or by himself. He is as dysregulated as he can get. It means that when we try to get everyone to sit quietly and watch TV or let the dog have a nap, Little Bear is not physically capable at that moment in time of leaving her alone or of being quiet or of sitting still. It means he seems very disobedient and is constantly told off.

Having written about Interoception recently, I do wonder if that is the root cause. I read that part of being under-responsive to interoceptive feedback is that you don’t know when you’re getting over-excited or when you need a break. Little Bear certainly doesn’t when he is with the dog and last time, he was absolutely exhausted when we got him home, having come down from his adrenaline-fuelled high.

Obviously if we did get a dog Little Bear would love it but you can see why it feels risky. We would do our research and get a calm breed but a puppy is a puppy and all will be excitable to some degree. We wouldn’t be able to rely on Little Bear sticking to any sort of rule about leaving the dog alone for five minutes or not playing with it roughly and I do wonder how on earth we’d be able to train it properly in those circumstances. The very worst outcome for Little Bear would be us getting a dog then having to send it back, something we are, for obvious reasons, keen to avoid.

It feels a little mean, saying our child can’t have the thing he would love most in the world but until his regulation is improved, it’s too risky. I know there is a lot written about the benefits of dogs for adopted children but I wondered whether anyone else experiences the issues we do?

I think we’ll stick to cats and hens for now. Easter is just around the corner, the perfect time to welcome some new chicks…