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.

 

Adopted Children & Eating Issues

A really interesting chat broke out on Twitter earlier this week between several adopters. It was one of those chats where you realise that all your children do something that hitherto you didn’t really identify as being an ‘adoption thing’ but actually, now everyone is doing it, it must be. The thing we were talking about was eating. We have quite a few behavioural issues around food here but this chat was more about the mechanical side of things: disruptions to the process of taking a bite of food, chewing it and swallowing it. The chat really began around children holding food in their mouths for much longer than average, something which seems to be common in many adoptive households. We also noticed that many of our children overstuff their mouths and choke more often than you’d expect.

The big question was why? We had a healthy debate and several of us stuck our oar in. As with most complex issues my first reaction was to blog it out so here is my summary of the main factors:

The reason for holding food in their mouth could be a sensory one. It could be that a child is under-sensitive to sensory information in their mouth and can’t ‘feel’ the food there very easily. If this is the case it is likely they would be better at eating/chewing/swallowing food which has a more extreme taste or texture or temperature. Spicy foods or those with a lot of crunch or those which are sharp or bitter will provide the mouth with more sensory information than bland foods, helping a child to ‘know’ it’s in their mouth. The difficulty here of course, is that you child will have their own taste preferences and these will influence the range of food they will eat. I think this category could apply to Little Bear but he really doesn’t like spicy foods. He does like a good crunch though, especially from a crisp, but won’t tolerate it from a raw carrot. He has no difficulty dispensing with cold ice cream!

The converse of this point could also be true: some children are over-sensitive to sensory information in their mouth. These children are often sensitive to different textures finding some pretty disgusting. It’s possible that these children hold food in their mouths because it is preferable to them than swallowing it. Other signs of this could be spitting food out or an active gag reflex.

Often children need to get used to a bigger range of textures before being asked to eat the consistencies of food that bother them. Because of how the sensory system is wired, the next best place after the mouth to explore texture is with the hands (and if they can’t manage this, then with the feet). In typical development, young infants naturally put their hands in their food and explore it. This is an essential developmental step and some older children need support to revisit it to help with eating issues. Sometimes the foods they struggle to tolerate can be played with and explored manually before them being brought close to the lips then perhaps just touching them with their tongue tip. This should be a gradual process (weeks not hours) and needs to be managed sensitively. It should be done with a child, not to them. You can also lessen sensitivity through general tactile work – exploring different materials etc. It doesn’t necessarily have to be done with food though that does work well.

I suspect there is a third sensory category when it comes to eating which would be ‘sensory seeking’. I don’t think you would see food being held in the mouth with this aetiology but you might see over-stuffing as a child tries to get the most sensory input they can. I think you would see a constant need to eat and perhaps wanting to eat stronger flavours/ more extreme textures/ more extreme temperatures. It wouldn’t be a huge leap to think that children who seek oral sensory input would also chew/suck non-food items, though I think it is possible to seek oral stimulation without the food side of things.

However, there are other possible issues at play. What about experience? As most of our children were not with us when they were babies, we have very little information about their weaning. We don’t know if they were allowed to experience the getting messy-putting-their-hands-in-their-food stage. We don’t know what range of tastes they were given or even if the types of food they were weaned on were appropriate for an infant. We don’t know whether that may have led to sensitivities and a greater likelihood of gagging. We don’t know whether they went hungry or whether they were force-fed. All these options could cause potential eating issues now.

We do know though that tastes develop based on experience – the more times you try a food, the more likely you are to like it. We also know that there are ‘windows of opportunity’ within the weaning phase and if children are not exposed to tastes at these points, the window can close.

I strongly suspect that Little Bear hadn’t tried a wide range of foods before he came home. He certainly wasn’t too familiar with vegetables. If children haven’t been exposed to many different tastes and textures, they won’t eat a wide range. Things that are new to them will seem alien and it is likely their first reaction will be of dislike. They are likely to pass these foods around their mouth/ spit them out etc.

Research suggests that rather than assuming they definitely don’t like that food, we should keep offering it to them. Obviously you have to be extremely careful with making children eat foods they don’t want so this is pretty tricky. We used to do a lot of hiding vegetables – in sauces or soups and Little Bear happily took them that way. I also used a bit of good old bribery (some of you won’t like this) e.g. you can have pudding when you’ve tried one bite of x/y/z vegetable. We’ve had good success with this and I’m really proud of the range of vegetables Little Bear will choose to eat now.

The other aspect of experience that is important is that our muscles develop alongside the foods we eat. If we just eat sloppy or dissolvable textures all the time, our chewing muscles won’t develop. Many children who have experienced neglect have low muscle tone in general. Some have such low tone that their face can appear droopy and they need specific stimulation of those muscles to improve the tone, often completely altering their appearance.

I suspect that Little Bear was mainly given a mushy diet in foster care and didn’t experience a range of textures like fish or meat. I have noticed that he is more likely to hold chewier items in his mouth and this could be because his muscles are underdeveloped and chewing is actually really hard work for him. I chatted this through with a friend who is experienced in children’s eating and drinking difficulties a while ago and she suggested building texture up gradually. You can’t expect a child to go from eating Weetabix one week to steak the next. There needs to be a gradual build-up of chewiness. I think this has led to an improvement here. Little Bear will now happily polish off a range of fish, sausages, bacon or chicken (if it’s soft enough). He will eat beef but it is still noticeably effortful for him, it stays in his mouth a long time and can result in it being spat out.

My friend also pointed out that if you aren’t experienced in chewing (or sometimes this just happens randomly) you don’t develop the side to side movements of your tongue that you need to push food from one side to the other as part of the chewing process. She said you can develop this outside of eating by playing games that involve trying to touch a specific item in a specific place with your tongue or just the teeth on one side. I used to add a little game onto the end of tooth-brushing involving Little Bear playing ‘tag’ with his tongue and the brush.

Although I don’t want to get into the behavioural side of things too much, it is also pertinent to consider a child’s general presentation. Do they have difficulties with attention control and concentration in general? Little Bear does. Could it be that he gets distracted mid-chew and forgets he has food in his mouth? I do tend to give him frequent prompts and reminders to keep chewing. I also need to remind him that his mouth is full so he shouldn’t put the next mouthful in yet.

So far, that is quite a lot of possible factors that could be affecting our children’s eating. However, I haven’t really mentioned swallowing/choking and the factors above don’t really explain why some children who were removed from neglectful situations very early or even at birth still go on to have these types of difficulties. Could something be going on in utero?

It’s certainly possible because the bit of the brain that is most developed when a baby is born is the brainstem. This is also the bit that controls basic functions such as eating and drinking. The cortex and higher brain regions mostly develop after birth and are consequently very susceptible to environmental damage such as lack of stimulation. Because the brainstem develops during pregnancy, one assumes it is more susceptible to damage from things that happen in utero than any other bit of the brain. We know that recreational drugs, including nicotine and caffeine, as well as alcohol and stress hormones such as cortisol cross the placenta and impact an un-born baby. I have struggled to find specific research about particular pollutants affecting the eating and drinking areas of the brain but it isn’t a huge leap to imagine it’s possible. Is there something different about the structure or connections in our children’s brains that lead to the types of mechanical eating difficulties we are seeing? Perhaps.

At these points I like to reassure myself with the concept of brain plasticity – the ability the brain has to build new connections and new pathways; to learn to do things it couldn’t do before. I read that the brainstem is less plastic than the cortex but it is still capable of plasticity. Maybe change in the areas it controls is more difficult to achieve and may take longer but I like to think it’s possible.

It seems our random Twitter chat has led us unwittingly into a fairly complex area. My feeling is that this little corner of behaviour is under-researched and I suspect I have raised more questions than answers. If anybody knows of any articles that could tell us more, please send them my way. In the meantime this one was sent to me and I think it’s well worth a read: Article about the impact of trauma on the developing brain

 

 

 

*I probably need to point out that all children are different and will all have been impacted in different ways and to greater or lesser extents by their experiences to date. The reasons given here are just some of the possible reasons and may or may not apply to your child. They are also my personal thoughts and based on my reading only.

 

 

Play

The other day I noticed both Bears playing together in a way I hadn’t observed before. Little Bear had built a new Lego set, an air ambulance, and had somehow managed to convince his brother to play with him. Not only that but he had convinced him to include his new Lego set, a superhero ship with Ant Man in it, and the two of them were caught up in some sort of imaginary world that involved Lego men living in an Egyptian sarcophagus, daring rescues and the occasional mention of a ninja. The game moved around the house, obviously, because helicopters and spaceships do fly and baddies will insist upon moving their lairs.

It felt noteworthy for a couple of reasons. Big Bear has hitherto been very cautious about his possessions around Little Bear, generally keeping new or precious things safely stowed in his bedroom with its securely lockable door. There are now days when he leaves the door open (a MUCH bigger deal than you would imagine and one we are pretending not to have noticed for fear he will shut it again) and days when he is more relaxed about his stuff. The fact that he had just built something new and was willing to play with it in the same game as Little Bear really showed how far the Bears have come in terms of trust and respect for one another.

I wondered why they hadn’t played similar games before with Little Bear’s toys (he’s only too happy to share with his brother) but realised it was because until very recently, this year anyway, Little Bear couldn’t have played those games. He wouldn’t have been able to follow the storyline or formulate appropriate dialogue to be able to join in, however much he might have wanted to. The leaps he has made (and continues to make) with his language development have unlocked a whole new world for him in terms of imaginary play. Not only that, but his ability to concentrate and to engage in more complex games has really developed too.

It has got me reflecting about play in general and the changes we have seen over the nearly three years Little Bear has been with us. I’m going to talk about play in developmental stages. There are various ways play development can be categorised but I’m thinking mainly about symbolic play/ imaginative play rather than social play. There are several different terms for each of the stages that can be found in literature on the subject but this is the version I personally find the most useful.

Exploratory play

This is the first stage of play to develop (in typical development) when infants pick things up, drop them, chew on them, throw them, bang them together. Children are exploring tastes, textures, weights, sounds, wetness/dryness etc. They tend to be fascinated by anything and everything, not necessarily things you traditionally consider to be toys. It’s their first attempts at engaging with the world around them and they want to experience everything.

I suspect that many children who have adverse starts in life don’t have enough experience at this stage. If you spend too long in a cot or pushchair or highchair without any stimuli, you won’t be able to explore the world around you in the way you should. Being neglected at this stage robs a child of the experience they need to assimilate their senses. It is hard to learn to differentiate between hard/soft, wet/dry, hot/cold, rough/gentle if you don’t have any experience of feeling/touching things. I suspect that many sensory integration needs have their root in neglect at this stage.

When we met Little Bear, aged 3 and a half, much of his free play happened at this level. We spent a lot of time splashing in water and digging in sand. I also spent a lot of time telling him not to throw things or touch things that I would have expected him to know not to touch. There is the time he tried to lick a snake, the time he played in the toilet water and the time he smashed all the hens’ newly laid eggs. I genuinely believe Little Bear was still trying to assimilate all the sensory information he was getting from his environment and can only assume he hadn’t had enough time exploring (safely) when he was younger.

I had to make conscious efforts to offer him plenty of opportunities to engage in tactile sensory activities whilst teaching him some boundaries to keep him safe.

Water, the sand pit, kinetic sand, play doh, baking, not concerning ourselves with cutlery and turning a blind eye to him laying down prostrate and ‘swimming’ in gravel were the key, alongside exposing Little Bear to a wide range of ‘normal’ play experiences.

Pretend play with real objects/ oneself

The next stage of play is when children begin to show an understanding of what everyday objects are used for e.g. they might pretend to drink from an empty cup or babble into a pretend phone.

The thing about children who have been neglected is that their development is pretty patchy and though Little Bear had gaps at the exploratory stage, he did know what everyday objects were for and could pretend in this way already. He was certainly partial to a phone, even though his language skills wouldn’t allow him to have much of a conversation.

Large doll play

It isn’t usually long before children begin to relate everyday objects to each other and to their other toys. This is when they start to ‘feed’ their teddies or get them dressed.

We are pretty partial to a teddies tea party in our house and I can remember Little Bear being a bit bewildered the first time we got plates and food out for his cuddly animals. He soon picked up the idea though, often dolling out real biscuits for the animals and taking the opportunity to have some himself.

I found this stage useful for modelling behaviours and exploring some of Little Bear’s behaviours in a less direct way. Sometimes I would make the animals do things he had done or that we were finding tricky and it was interesting to observe how he dealt with them (he often took the role of parent). We also did it in a way that took the heat off Little Bear. Sometimes it was his rabbit who had been shouting or throwing things or saying rude words and we would ask Little Bear to have a word with them and teach them how to be sensible. He loved this responsibility and getting the rabbit to behave often mysteriously led to improvements in Little Bear’s own behaviour.

I’m not sure whether the last paragraph is more about developing play or exploiting the stages of play but still. Occasionally it worked the other way and Little Bear would express a fear or a worry through the voice of his animals, which was useful too.

Sequences of pretend play

Over time children begin to put several bits of play together so they might play with their toy kitchen and act out making dinner, feeding it to their doll then washing up.

I would say we were working at this stage alongside the previous one and exploratory play when we first met Little Bear and for the first months afterwards. That is the thing with child development; it is often not neat and linear, but skills overlap and appear at different rates. I think that children who have had difficult starts are more likely to have a muddled developmental profile and I can honestly say we could go from working at a 6-12 month level in the morning to approx. a 3 year level in the afternoon then back to an 18 month level again. It was hard to keep up with but imperative to match Little Bear’s level as best we could. There is no point trying to work to chronological levels when your child needs something much different. Little Bear would not have been able to reach the places he has reached had we not filled in the gaps.

The main sequences of play we engaged in a lot involved Little Bear pretending to be a superhero. We did a lot of dressing up, building dens and pretending we were in peril. He seemed to love it and it was great for extending his world knowledge and vocabulary.

Small World Play

At this stage children transfer their play skills into miniature representatives of the types of games they have already been playing. They might start playing with a farm or Duplo or Playmobil and doing some basic pretending.

I know we weren’t ready to play at this level when Little Bear first arrived. I distinctly remember trying to introduce him to Duplo but he lost his temper within the first nanosecond because he couldn’t get the man to sit in the bus as he wanted. You would certainly expect a typically developing three year old to be able to play at this level but it would take months of exploratory play, building resilience and bigger, more physical play for us to be ready to try again.

I think it has been the development of Little Bear’s attention span and his resilience to persevere through knockbacks and failed attempts that has allowed him to engage in small world play and crucially, enjoy it. I find it uniquely pleasing to observe.

Little Bear has always had a good imagination, that was clear from day 1, but it is only at some point in this past year (he’s 6 now) that everything has come together to allow him to explore it in his play. Play stages and language development are very much aligned so it shouldn’t really be a surprise that it is the point at which he has gained linguistic competence that he has also developed complex play abilities.

Play develops from here on in, becoming more complex, with longer, more detailed scenarios panning out. The Lego game that I observed the boys playing at the start of this post epitomised the progress Little Bear has made – playing a small world game, with tiny fiddly pieces that require a heap of resilience, making up an imagined scenario, adding appropriate dialogue and crucially negotiating and listening to his brother so that they could both be in the same imagined place, at the same time, contributing to the same scenario. It is standard kid stuff on face value but it is so complex and requires so many pre-requisite skills that it really is a feat of development.

I should really give Lego its own special mention before I finish because we love Lego in our house and also because it alone is a good indicator of how Little Bear is doing.

Big Bear had a premature love for Lego, getting into it from age 2.5 and loving it ever since. Given Little Bear’s disordered/ delayed development he wasn’t going to get into it anywhere near as young. I think he was about 5 when he could first start to tolerate building a simple model with a high level of adult support. I remember worrying because he really struggled to scan the tray to find pieces he needed let alone being able to follow the instructions. As with everything, we have practised and persevered and Little Bear has developed his skills quickly (once he overcame the initially difficulty). This week he chose to spend his holiday money on a sizeable Lego model of a dragon. It has an 8-14 age recommendation and he has done brilliantly, followed the instructions well and built the majority of it himself with just a little adult support.

What are my conclusions? Well, Little Bear is something of a legend but that is often my conclusion. Play has played a crucial role in his development and is very much intertwined with language development. Play has to happen in developmental order. You can’t skip bits willy-nilly; whichever stage a child is at, that is where you need to meet them. Development doesn’t happen overnight; stages take as long as they take. Developmental delay is never hopeless. Progress can and does happen and we should be aspirational for our children, no matter their start in life.

 

 

 

 

 

 

Be Prepared

I’m no Boy Scout but, as an adopter, I do think it might be worthwhile nicking their motto. When you look up its meaning, Wikipedia says it means “you are always in a state of readiness in mind and body to do you duty”. Now, although I do not consider adoptive parenthood to be my ‘duty’, I have committed myself to it and do find myself in a constant state of readiness. I couldn’t tell you what I’m ready for necessarily (often a lie down in a darkened room) but I do tend to expect the unexpected.

I wouldn’t say that Little Bear is unpredictable. Well, I sort of would. He’s predictable in that I know the full range of behaviours he might display and I know him well enough to anticipate how events or states might impact him. I can often predict what he might do next or what he might say or how he might react. However, what none of us can really be sure of is what kind of day it is likely to be when he wakes up in the morning. I’m starting to realise that there can be quite a variance. Also, no matter how well we know Little Bear, he will always have the ability to occasionally throw in a curve ball or say or do something out of the blue. As well as this, even though I can often anticipate his behaviour, it is still the sort of behaviour you should be ready for. For example, if your child is a runner, you can’t go round being surprised when they run off. You won’t expect them to run off every second either but you will always have at the back of your mind that they might. You’ll be prepared to grab them or sprint after them, just in case.

On Sunday, I had a lovely afternoon with Little Bear. Big Bear had gone on a playdate then out for tea and to the cinema with Grizzly. Little Bear and I stayed at home. We got the Lego out and sat in the playroom for ages building things and pretending. Little Bear was calm and played happily with the same game for an hour or so. When I could tell he was tiring, I made him some tea and let him have it in front of the TV for a rest and also because his brother had gone to the cinema. Afterwards I ran him a bath and we had a big game of floating racing cars. He read his school book then I read to him. He chose Green Eggs and Ham and realised after a few pages that he could actually read that too. He kept saying “no, I can read this one Mum” in a slightly surprised tone and continued to prove his point until he had read the last 30 pages or so. He was an absolute joy. We had a lovely time. It felt like quality time. I felt he had benefitted from us being on our own. All was good. I really enjoyed him.

On Monday morning, I was lulled into a false sense of security. My prediction of Monday was based on Sunday’s rose tinted lenses. This was foolhardy. I should have been more prepared.

Monday wasn’t a really bad day but it was very different day. I’m pretty sure that Little Bear didn’t stop talking. At all. All day. I’ve read somewhere about ‘verbal scribble’ which is a very apt description. Little Bear verbally scribbled all the live long day. We went to the park. We wanted to walk. Little Bear wanted to play football. We played football then we walked. He didn’t want to walk. We were ready to leave for lunch. He didn’t want to leave or get out the tree. We went for lunch. He didn’t want lunch; he wanted to go to the park. You get the picture? Everything was a bit of a battle and he REALLY wanted to do a lot of things. Each time we did the thing, he REALLY wanted to do another thing. It was as though nothing satisfied him and he was constantly seeking life’s secret elixir, without any success. It was a tiring, trying of patience kind of day. It also involved loudness, constant interrupting, difficulty sitting still and a need to be fed otherwise eating wasn’t going to happen either.

I should have been prepared for the presence of dysregulation because it’s an omnipresent possibility. I’m not sure why I wasn’t but it’s certainly nicer to begin the day assuming you are going to enjoy your child rather than count down the minutes until bedtime.

Based on how Monday went, I wasn’t too excited about today. Grizzly was going to be at work and I was mostly going to be having 1:1 time with Little Bear.

This morning, he surprised me with one of those unexpected, out of the blue curveballs: a life story chat at 7am. There is nothing like a mention of birth siblings to wake you from a sleepy stupor and get your ‘be prepared to answer whatever array of questions might be coming your way hat’ on.

Life story work is one area I can’t really predict with Little Bear because it happens so infrequently. Months go by with no mention at all and then all of a sudden, bang, a big question when you least expect it. However, because we are adopters and because we know he might do this now and again, it is in the backs of our minds and we are sort of prepared for it in an expecting the unexpected kind of way. So today started with perusing of the life story book and the fishing out of some photos. I think the chat went okay. Little Bear seemed satisfied with his information and I didn’t go away deriding myself for having said the complete wrong thing.

We dropped Big Bear off at my Mum’s for his grandparent time and headed into town together. Having not had particularly high expectations of the event, I was relieved that we had a lovely time again. I suspect that 1:1 is much needed for Little Bear and hence he generally copes better in those situations. He needed new shoes which put a spring in his step; I tactically fed him toast at the right time (and a hot chocolate in an espresso cup which is quite possibly the cutest drink a child could have); we stuck stickers; we coloured; we stroked a rabbit; we went to the library. It was lovely and I really enjoyed him. Little Bear climbed a few things and tried to swing on a few things and found it hard to sit still. But I knew he would: I was prepared.

Sometimes situations arise that with the best will in the world you can’t anticipate and they can lead you to question what you really are prepared for. When we got to the library, rhyme time was on. I didn’t know this; it was a coincidence. In this instance, rhyme time was full of parents and very small children – babies and young toddlers. The group were singing nursery rhymes and listening to stories. Little Bear was rooted to the spot, transfixed. Initially I didn’t pay him much attention, encouraging him to look through the books. When I realised he was in a bit of a trance, I watched him, watching them for a few seconds. He looked shy, curious and a little mesmerised. Having just read The Boy Who Was Raised as a Dog by Bruce Perry, it was fresh in my mind that children who have been neglected have often missed out on early rhythmic interactions and the singing of lullabies and nursery rhymes. It was also fresh in my mind that older children still need to experience these things in order to heal their trauma.

I looked at him looking at them and tried to weigh up the situation. He was twice or even three times the size of most of the other children. I had no idea whether you were meant to officially join the group or pay. I wasn’t really prepared for this situation. However, I concluded that the bottom line was that Little Bear, whether in the body of a lanky 6 year old or not, was developmentally well matched to the group and as uncomfortable as that felt, I would need to suck it up. “Do you want to join in?” I whispered. The answer was basically yes, so long as I came with him. I crouched beside him, to make us slightly less conspicuous, as he sat on a chair in the group.

Little Bear loved it. He was completely entranced by the songs and sat really well. He couldn’t have managed to join in when he was 3 or 4 and probably not even 5, but at 6, it was just perfect for him. Having missed out on all those early experiences and having had such significant language difficulties, Little Bear doesn’t actually know any songs. Some sound familiar to him but he doesn’t know the words well enough to sing along. That doesn’t stop him trying and results in a tuneful hum with some louder words thrown in for good measure. I watched him side-on, feeling a little embarrassed but making myself get over it, while he sat straight-backed, earnestly joining in, wide-eyed and trying his very best. I loved Little Bear so much in that instant that my heart hurt a little bit. I wasn’t prepared for the situation but I am prepared to do whatever I can to help him.

The next second his hand was going up to suggest a rhyme. I was intrigued by what he would say and slow to anticipate what was inevitably coming next. Little Bear suggested ‘jingle bells’ and broke into song and he was about two lines in when I woke from my daydream and realised this wasn’t going to be the clean version. Yep, Uncle Billy and all that…

The Scouts are right: be prepared. You don’t quite know what might be coming next.

 

 

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.

Interoception

When I went on Sensory Integration training (admittedly about ten years ago) we were taught that there are seven senses: all the ones you usually think of (taste, touch, sight, smell, hearing) plus proprioception and the vestibular system.

Proprioception is the sense of knowing where your body is in space and is stimulated by things like deep pressure, heavy work and vibration.

The vestibular system is in your inner ear and is the sense that helps you battle gravity. It is stimulated by movement, especially spinning or being upside down, and is the sense that causes travel sickness. If anybody has experienced Labyrinthitis they will have experienced their vestibular system on overdrive! Grizzly had it so badly that he literally didn’t know whether he was the right way up or not and couldn’t get out bed for several weeks or even move his head.

I think about Sensory Integration (SI) quite a lot when it comes to Little Bear and I’ve previously written about it a little in Too fast, too hard, too loud. The basic premise of SI is that everybody has a sensory system and we are integrating sensory stimulation all of the time. Everybody’s system is different and what we can cope with/ what we need in terms of sensory stimulation in order to be comfortable in our bodies will differ too. Little Bear certainly seeks proprioceptive and vestibular input which has led to us having a free standing pull up bar in the playroom so he can climb and hang as he needs, instead of seeking similar input in a more dangerous fashion (like clipping his belt loop to the bed and hanging from there. Full marks for ingenuity but a little too dangerous for my liking).

However, a couple of articles have caught my eye recently which have suggested my SI knowledge is a bit out of date. Current thinking is that there are in fact 8 senses: all the ones I mentioned plus something called Interoception. I have done some digging to figure out what it is and why it might be important for our children and thought it may be useful to share.

Interoception is a bit like proprioception but from the inside. It is the sense of knowing how things are within our bodies. It includes things like being aware of our heart beat and whether it has sped up or slowed down; being aware of our digestive system – are we hungry/are we full/do we feel sick; is our temperature ok – are we too cold or too hot; awareness of blood sugar – are we getting shaky and a bit low on fuel; awareness of our bowel and bladder – are they full/ do they need emptying; do we have pain anywhere.

I’m imagining it like there is a telephone system between our internal organs and our brain. The lines of communication need to be kept open so that if our heart is beating faster, it can “ring” the brain which can then take measures either to ignore that or suggest for you to sit down and rest for a bit. Or you might have a full bladder. The bladder would call and tell the brain to make you aware you needed a wee and you would go to the toilet. It’s all good and very effective when working properly but there are lots of things that can get in the way.

Studies of infants have suggested that interoception develops very early, perhaps in the first few months of life and might be stimulated by things such as their parent stroking their cheek or rubbing their back – which are pleasant sensations that might ease internal states. One study showed that being stroked on the face led to a decrease in heart rate in 9 month olds. I read something else which stated that infants “associate interoceptive signals of warmth and satiety with their caregiver’s face, which in turn drives attachment behaviour”.

From the limited evidence, you can see that a child who has been neglected (hasn’t received physical comfort) or who has had multiple caregivers (seen many carers faces), might not develop typical interoceptive skills. There is already evidence to say that children who have suffered physical abuse grow up to have altered pain sensations. One article I read suggested that investigating the impact of adverse childhood experiences on interoception is a big area which requires loads more research.

Even if we don’t fully understand all the reasons why a child may end up with a faulty interoception system, we do know that they can and that they may be under-responsive, over-responsive or seeking of interoceptive input. Being over-reactive to bodily signals such as heart rate, butterflies and muscle tension has been associated with anxiety and depression. I suppose that is the equivalent in my analogy of the brain being phoned constantly for every internal twinge or tickle instead of just for the big ones.

Being seeking or under-responsive to feelings of a full tummy has been linked to eating disorders. In this example the brain isn’t getting the call when the tummy is full or the brain starts to panic when there aren’t calls so stimulates the body to continue eating. Something about the feeling of fullness is desirable. I think the converse could also happen – being empty being the more desirable feeling.

If children struggle with interoception, they can find it difficult to know whether it is something inside or outside of them that is causing discomfort, leading to dysregulation or an unusual response. I think hunger is a really good example as Little Bear definitely struggles to identify when he’s hungry (hangry!) and will tend to get irritable and aggressive with anything and everything rather than identifying his tummy is empty and that he needs to eat.

Some researchers think that interoception could underpin many psychopathologies and could be a lot more crucial than we yet realise. One thing they do agree on is that being able to recognise and respond to your internal states (interoceptive feedback) is a crucial skill for recognising your own emotions, learning and good decision-making. Poor interoception tends to be linked to risk-taking behaviours such as drug-taking, promiscuity and alcohol abuse in later life. Could this be because these things tend to heighten sensation, giving the brain the feedback it needs but doesn’t usually get?

As emotions such as anger, nervousness, and excitement have a physical impact on the body, as well a neurological one, we can see how interoception also has an involvement with our emotional development. In fact interoception is crucial in helping us to identify which emotions we are feeling from the signals our bodies are giving us.

It turns out that interoception is a much more complex and wide-ranging sense than you would initially think.

So what about Little Bear? What I have learned that is of use to him?

Well, according to SPD Star “it’s only when all of the other senses are regulated and in check that our body is quiet enough to listen to what those internal signals are telling our brain”. In other words, most children who experience SI challenges are likely to experience some interoceptive differences and they won’t be resolved until their other sensory needs are being met. Let’s hope that hanging bar is doing its job then.

I have identified that when it comes to the interoceptive sense, Little Bear is under-reactive. I have already mentioned that he would neglect to eat without adult support but perhaps the biggest thing I’ve learned is that he is probably under-reactive in the bowel/bladder department too. I have talked about his Continence Issues previously but this information shines a new light on them. It seems very likely that the phone line between Little Bear’s bowel/ bladder and brain is a bit faulty. When the bowel/bladder start to fill up, the message does not immediately get passed to his brain. It is only when they are full to capacity and the red warning light should be going off that Little Bear’s brain gets the signal to tell him to go to the loo. By that stage he often needs to run and sometimes he inevitably doesn’t make it. The theory certainly fits with the behaviour we observe.

I like this as a way of explaining why he’s not consistently dry, it makes sense. As with most aspects of SI it also means there is hope and that with the right approach he should be able to make progress.

I have found it more difficult to find specific advice about how exactly to work on interoception, other than to speak to an OT or get a sensory diet written. However, what I have gleaned is that you basically want to get the brain more tuned into the signals from the organs/ muscles and Mindfulness is mentioned quite a bit in the literature. I guess that makes sense – quietening everything down so that you can hear the internal whispers that you would otherwise miss. Once you are more tuned into those signals, your brain should get better at listening out for them.

Some of the things we already do at home seem to be appropriate for improving this sense. Things like when Little Bear is hungry, I will draw his attention to the rumbling sounds from his tummy and explain what they mean. Sometimes he will say he has tummy ache and I’ll know from the coincident hyperactivity that he needs the toilet. Since reading about interoception I am getting more conscious of not just herding him to the loo but trying to encourage him to feel that tummy ache and identifying it as the feeling of needing the toilet and explaining that when you feel that sensation, you know you need the loo. This sort of cause and effect doesn’t always come naturally to our children anyway and sometimes they do need us to state things that seem obvious to us (it isn’t obvious to them otherwise they would be able to act on the sensations).

Apparently regularly prompting a child to go to the loo helps them to get used to the sensation of an empty bladder and to experience the contrast with a full bladder which should help to develop their interoception over time. Using technology such as vibrating watches is a helpful way of keeping on top of their interoceptive challenges a bit more independently, as well as teaching them strategies such as going to the toilet during every break whether they think they need it or not.

As with most things adoption related, this isn’t a quick fix. It takes time and getting other sensory needs under control first.

I can see improvements in Little Bear’s interoception system though. He was certainly under-responsive to pain when we first met him and though he still has a high pain threshold (a few more than average phone calls from the injured area to the brain before a response happens) he does now respond to knocks and bumps in a much more typical way. He will cry and come for a rub where previously he could have banged his head on a solid object and not even broken step or let out a yelp. The toileting and hunger issues have improved too, but in a stepwise fashion, where we still have some steps to go.

Interestingly, while being hyper-aware of your own heart rate can go hand in hand with anxiety, some children enjoy the sensation of a heavily beating heart and actively seek this – driving them to exercise – and consequently they become very fit. I’m not sure if this applies to Little Bear but I’m not sure that it doesn’t either as he certainly likes running about/ bouncing/ hanging etc. and is developing into an impressive sportsman.

As with most differences, a differently developed interoception system brings its challenges but also its unexpected silver linings.

 

 

*If you want to know more about interoception, this is a particularly comprehensive article:

https://www.sciencedirect.com/science/article/pii/S187892931630127X

 

**This blog is based on my own reading. If you think I’ve missed something or not quite explained something properly please let me know.

 

 

 

 

Fantasy versus Reality

Little Bear has been everywhere, man. He really has. He has been to America, Spain, the Eiffel Tower, Australia, the jungle. He has even been to Paradise. Any country you can name, he has been there.

And the things he has got up to! He’s wrestled sharks, ridden elephants, punched President Trump in the face and even witnessed the death of Princess Diana. Many people have tried to harm him along the way but he’s killed them; or punched them in the face at the very least. He’s very strong. SUPER strong. In fact, probably stronger than Batman or maybe even the Hulk. And he’s got guns. A whole arsenal of them. He’s taken out many a good man.

And he has two Fathers, but sometimes one is dead. His Father is also VERY strong. He can do ANYTHING. He has fast cars. He’s encountered a plethora of sharks, tigers and poisonous spiders himself.

Oh, and did you know Little Bear has a special car? One that can fly to heaven and bring people back from the dead! He quite often pops there and back in the day apparently. And all those songs you hear on the radio? Little Bear sang those. And all the sportsmen on the television? Little Bear.

As for that school he attends! Well, there are frequently brawls in the classroom and the teacher seems a right one for throwing the first punch. Sometimes the Head teacher joins in. Sometimes they do PE on roof. And they hardly ever feed them lunch.

Apparently.

According to Little Bear, anyway.

I wouldn’t describe it as lying, because Little Bear thinks these things are really true. I think I would describe it as a very fertile and fantastical imagination. Most of the time, Little Bear’s high tales are very entertaining and I’m sure that when he is a little more adept at writing, he will be able to conjure up some amazing stories. Perhaps he will be an author, or film-writer; he certainly has the creativity for it.

It does have its drawbacks though. It is virtually impossible to know when he’s telling the truth, especially as he seems so good at convincing himself that things that haven’t happened really have. Due to that he can get genuinely annoyed with you for saying something isn’t true (even though it very clearly is not) as he is so bought into the idea. We can’t rely on reading his responses because his own position of what he thinks happened is so skewed.

Most of the time, I don’t attempt to call him out on his stories. The only parallel I can draw (and please bear with me as it is a bit dubious) is that if somebody had confusion (Dementia) and kept forgetting things, you wouldn’t continually tell them they were wrong and draw attention to the forgetting and the repeating. You would just go along with them so as not to upset them. There would be no real benefit to either of you to insist upon correcting them.

It feels the same with Little Bear and his fantastical tales. What does it matter if he claims to have met the Queen or have been on a midnight adventure with a friendly lion? It doesn’t matter and there is no harm in it. To be honest, we mostly find him hilarious and he often takes us by surprise with a new, even wilder tale. The story-telling is part of his charm and we wouldn’t want to discourage it.

However, it is essential that, as he gets older, he does learn to know the difference between truth and lies and that he can be relied upon to tell the truth (even if he still likes some fantastical escapism). There are times therefore that I do call him out and label what he has said as a lie. This tends to be when he has said something that sounds more like an accusation or relates directly to one of us. For example, he does have a tendency to say that people have hit him when they blatantly haven’t. I could sit with him and a grandparent or Grizzly the whole time and despite me having seen everything, he might still claim that somebody present hit him. It’s not generally malicious, more that things just come out of his mouth and sometimes he can be purposefully provocative.

At these times I will call out the lie. I will say “you shouldn’t say that Little Bear, because it didn’t really happen. It is a lie.” I generally go on to explain what the possible consequences of telling the lie could be e.g. the person you are saying hit you could get into a lot of trouble with the Police. Occasionally, over recent weeks, when he has a made a wild claim and I have asked him whether it is true or not, he has sometimes admitted it is a lie, which is reassuring and shows he is starting to develop some awareness.

Obviously I have no idea if this is the right way of handling it, I’m just following my instincts (AKA making it up as I go along).

I have to admit that I have also duped him into telling me he’s lying sometimes by convincing him that our noses really do grow like Pinocchio’s when we tell an untruth. I have no idea what possessed me, it’s a very un-me thing to have done, but I’m reluctant to reveal the truth just yet as sometimes Little Bear will make a bold claim then a few seconds later say, “has my nose grown?”. Then I know I’ve got him. It’s the only time I can be certain he’s lying. It’s quite useful for situations such as ‘have you washed your hands after the toilet?’ where you really do need to know the right answer.

Don’t worry, the irony of me lying to him about his nose having grown is not lost on me in a blog about lying! I have to be a little bit wily though otherwise I would be constantly outwitted by a five year old.

We have discussed this issue with school and with PAS. Not because we are really worried about it but because school obviously experience it too – apparently Little Bear’s account of our summer holiday began with the boys enjoying the sea in their wet suits and ended with some sort of killer shark massacre.

The conclusion we have drawn is that Little Bear is in a developmental phase that would usually happen earlier. A quick bit of research suggests that typically developing 2 and 3 year olds lie frequently and spend a lot of time exploring the boundaries of fantasy/ reality. Most studies seem to suggest that around 3 is a pivotal age for being able to separate your imagination from real life.

Little Bear has such a spiky profile that it is quite possible that this is the level he is functioning at for this particular aspect of his development. We do wonder though how much this has been impacted by his language difficulties and whether he would have been able to move into this phase earlier had he have had a wider vocabulary at his fingertips. His language skills have leapt forwards again recently; perhaps this has allowed all those thoughts and ideas that have been in his brain for a long time to finally get out?

Often, when he is telling his tales, I am not worrying too much about the content but am marvelling at his fantastic turn of phrase and narrative structure. Only a Speech Therapist would say that, obviously, but nevertheless, I stand by it as a year ago, when he started school, Little Bear really struggled with those reading books without words that require you to make up one sentence to describe what is happening. And here he is, using words like ‘return’ and ‘sadly’ and ‘supposed’ and structuring a whole story that is cohesive and makes sense. It’s incredible really.

Whilst I do think this is likely to be a developmental phase, I came across something else today that really resonated. I was reading the Coventry Grid*, a resource developed by Heather Moran, to pull out the differences between the presentation of children with Autism and those with attachment difficulties. In the ‘mind-reading’ section, there is a subheading of ‘problems distinguishing between fact and fiction’. Here are the descriptors for children with attachment difficulties:

 

I’m sure you can see why it resonated. Who knew that this type of presentation could be another result of a neglectful start? Adverse Childhood Experiences (ACEs) have so much to answer for I’m finding; their effects being so pernicious and wide-ranging.

It also amazes me how much there is to learn about our children and despite reading a lot and thinking about Little Bear a lot and writing about him a lot, I am still learning new things and continuing to grow in my understanding of his behaviour.

 

 

*The Coventry Grid is an excellent resource that I would highly recommend. You can find it easily on Google.

I don’t actually spend all my days reading sensible things; I was working at the time. I was interrupted by a giant anteater appearing from my computer screen though. It sipped my tea with its long snake-like tongue before engaging me in a sword fight. I won.

 

Has my nose just growed?

 

Developmental Language Disorder

As both a Speech and Language Therapist and Mum to a boy with Developmental Language Disorder (DLD) this is a subject close to my heart. This week is DLD Awareness Week and tomorrow, the 22^nd September 2017 is DLD Awareness Day. Through this blog I want to make a small contribution to raising awareness of this poorly understood condition.

Although DLD has been recognised as a condition for a long time, its name is new. The condition has previously been known as Language Disorder or Specific Language Impairment (SLI) but everybody used the labels differently and the lack of consistency wasn’t helping with making people aware of it. There is currently an awareness raising campaign taking place which is brilliant. There are more children in the UK who meet the criteria for DLD than there are children with Autism but nobody has heard of the former. This equates to 2 to 3 children in every class with a condition that is poorly understood and under-identified. I’m not quite sure what us Speech and Language Therapists have been doing wrong but I’m pleased that there is now a big push to raise the public’s awareness.

As part of the campaign a video has been made. You can watch it here: https://www.youtube.com/user/RALLIcampaign

You can also tweet about it using the hashtags: #DLD123 #DevLangDis

There are 3 key messages that are the focus of the awareness raising campaign:

1. DLD means that a child (or adult) has difficulties with understanding and/or using language
2. DLD is a HIDDEN condition but is surprisingly common.
3. Support can make a huge difference to children with DLD

In order to bring these messages to life, I would like to share some of my son (Little Bear)’s journey.

1. In simple terms, Little Bear experiences difficulties with both understanding and using language. This visual produced by Susan Ebbels is helpful in giving more detail:

Little Bear experiences (or has experienced) difficulties with every area in the peach circle including Phonology. If you want to know more about his journey, the specific types of difficulty he has overcome and some of the things we have done to help him, you can read about it in these previous posts:  Living with Speech and Language Difficulties , Speech & Language & School, A bit of a rant, SaLT, EP & an Assembly, Communication Difficulties: Update

As part of the awareness campaign, the diagnostic criteria for DLD have been clarified. Crucially, for us, early neglect is not an exclusionary factor. This fits with my growing hunch that Little Bear was always going to have DLD but that his early adverse life experiences have served to deepen his difficulties.

2. DLD is a HIDDEN difficulty but it does show itself if you know what to look for. It is crucial that teachers in particular are able to see beyond ‘challenging behaviours’. A world in which you cannot understand much of what is happening around you and you are unable to verbalise your thoughts, fears and ideas is scary and frustrating. It is no wonder that many children with DLD express themselves through their behaviour. In general people need to get better at looking beyond behaviour – what are the child’s reasons for behaving as they are? In our case (and many other cases up and down the country) trauma could be at play too.

Children with DLD may not put up their hand in class, they might struggle to complete their work and their learning may not be progressing as you would expect. They may struggle in particular with literacy.

If you speak to somebody who is taking a bit longer to answer you or who doesn’t seem to be following your conversation or who is confusing to listen to, they might have DLD. Give them more time. Don’t worry about having a big pause – they might need that time to think. Try to keep your language clear. It doesn’t matter about flowery language – cut to the chase. Say what you mean. Your conversation will get much easier.

Children with DLD are not un-intelligent. Little Bear has the potential to learn many things but the way they are explained to him is crucial. He can struggle with too much or very complex language but if you can explain a complex concept to him in an accessible way, he will understand it. We have recently had chats about hurricanes, electricity and endangered animals and he is a sponge for knowledge if it is presented in a DLD friendly way.

3. The best message from our story is that support really does make a massive difference. A diagnosis of DLD is not hopeless. Despite having been neglected for the first 3 years of his life and having very poor language stimulation during that time, Little Bear’s language skills have gone from strength to strength with the right input. It is never too late to put support in place.

Of course Little Bear’s difficulties are ongoing but he is progressing all the time. He has gone from using 3 to 4 word sentences to full, compound, complex sentences.

His vocabulary has grown from a miniscule hand full of words to a wide and fairly ordered plethora. Although words do still have difficulty getting stored correctly and sometimes jumble together (Numicorn for unicorn (Numicon + Unicorn) or chicken yoghurts (nuggets + yoghurt)), Little Bear is getting better all the time at being able to analyse the parts of words and can mostly imitate them correctly now.

Little Bear’s grammar is not bad, though the order can be jumbled. We usually have one target on the go at a time. At the moment we are working on ‘bigger than’ instead of ‘bigger of’ which Little Bear is grasping and using appropriately.

Little Bear’s speech has gone from being completely unintelligible to just a few vowel and more common errors such as ‘v’ for ‘th’.

His awareness of the sound patterns in words has gone from non-existent to being able to say the first sound to being able to blend sounds together to being able to read.

This level of progress in a two year period is fairly transformational. He doesn’t sound like the same child any more.

The progress has meant that making friends is much easier and things like being able to sing are becoming a possibility (it is still a challenge but Little Bear tries very hard and repetition of songs is really helping him). Little Bear has learned lines and spoken in a class assembly. He can speak on the phone and family members can understand him and have a proper chat.

 

Little Bear’s DLD will be ongoing. It will probably affect him into adulthood but this doesn’t keep me awake at night because I have seen the progress he can make with support. I have every intention of keeping the support going and although DLD will always be a part of him, it needn’t stop him. With the right support, he will be able to reach his full potential.

 

 

Please share, use the hashtags and watch the video. We need to put DLD on the map. Perhaps you know someone who experiences it?

Parenting in Public

The actual title of this post should be ‘Parenting a Child with Behavioural Difficulties in Public’ but it’s kind of unwieldy and somewhat lacking in zing. It is what I mean though as ordinary parenting in the public eye is not especially challenging, in my experience.

As we are now coming to the end of week 6 of the summer holidays I have been spending more time than usual out and about with Little Bear in public. We have been to all sorts of places: shops, museums, LEGOLAND, the beach, restaurants, the zoo, parks. Sometimes it all goes swimmingly and there is nothing significant to report but at other times I end up feeling more conspicuous than I would really like.

I think it is partly because Little Bear’s behaviour is at a developmentally lower level than his chronological age. Whilst this is common amongst children who have experienced developmental trauma it can nevertheless look incongruous to the untrained eye. I’m wondering if it has become more pronounced because Little Bear has had a growth spurt and for the first time since he has been with us he is requiring clothes larger than his age. He is a tall 5 and half year old who frequently engages in behaviour more typical of a pre-schooler. Today, for example, we went to the garden centre and he spent a happy 10 minutes going from water feature to water feature putting his hands in and splashing about in them. I can remember Big Bear doing exactly the same thing but he was probably a couple of years younger.

Ditto pointing obviously at people who look different and/ or commenting loudly within their earshot: Look he’s got a bald patch!

Why’s your tooth broken? (Whilst staring at close range into an elderly lady’s mouth when sharing a hand dryer. Thank goodness for unclear speech).

Why does that lady have her belly out mummy?” (Bellowing and blatantly pointing at someone about 3 feet away).

I don’t know son, but perhaps she should ask herself that.

While these developmentally younger behaviours do draw some attention and can be mildly embarrassing, it is the more unusual or more unexpected behaviours that I usually find harder to style out.

Sometimes a waitress or passer-by might be friendly towards Little Bear. They might comment on his outfit or try to chat to him about something and, one assumes due to his attachment difficulties and mistrust of strangers, he can be downright rude. He might not answer them or he might scowl or he might say something like “go away”. I find myself being extra friendly or making some sort of excuse for him.

Little Bear can behave similarly with other children and sometimes he seems to square up to them or tries to stare them out.

Conversely he can be over friendly and will approach people and even lean on them or touch them despite not knowing them. He frequently approaches people if they have babies with them and will try to push the pram. Today he somehow got another Mum whom we didn’t know to push him on the swing (I had turned for a couple of seconds to greet our actual friend).

Little Bear is also quite hyperactive and inquisitive. This tends to lead to a lot of touching of things he shouldn’t, climbing on things he shouldn’t and general wildness. Today I have had to coax him out of a dog basket that he had pulled off the shelf and curled into in the middle of a thoroughfare and also lift him down from a wire gazebo which he had scaled and was hanging from the top of. He hangs off counters in restaurants and cafes and if there is any sort of railing he will be doing roly-polies on it (there is one inside Asda that he is particularly attracted to).

Though he tries his best to stay seated when we go out for meals it is very difficult for him and he does get up and move about. Sometimes he gets under the table. On one occasion he commando crawled under a public toilet door – Big Bear thought it was brilliant and all I could think about was how many germs he had touched en route.

During our holiday we stopped at Services that had a quiet Starbucks and he spent the first ten minutes crawling laps around a long bench seat in there while we tried to maintain a sense of decorum (and tried to pretend he wasn’t with us).

He often runs inside shops and restaurants and might try to pick something up that he shouldn’t e.g. in Sainsbury’s he might start kicking a ball around the aisles if he sees one for sale.

Sometimes Little Bear has public outbursts. Today, whilst in a busy queue at the ice cream kiosk at the park, Little Bear lost his temper because they had run out of the ice cream he wanted. He wouldn’t choose anything different and purposefully ran over his brother’s foot with his bike. When I told him to get off the bike, he kicked it, the wall and attempted to kick me. I could practically feel the anticipation and judgement of the other parents around me, tense with wonder at how I would surely punish him. I guess they were probably quite disappointed when I didn’t (you try juggling a cup of tea, an ice cream, a balance bike and a dysregulated child. Also, I could have lectured them in the pointlessness of punishing a dysregulated child but my hands were quite full).

Now, here is the crucial bit, clearly I do not think that any of this is acceptable behaviour. I was brought up to be polite and well-mannered and try to instil that in my children too. Of course I would prefer it if they would both sit still, be quiet, react politely and not draw excessive attention to us.

If I’m being really honest, when Little Bear first arrived and his behaviour was at the more extreme end of things, I frequently felt like stopping members of the public to say “don’t judge me, he’s adopted. I didn’t make him like this!” (Don’t worry, I never did and I do know it isn’t an appropriate way to handle things!).

In an ideal world my child wouldn’t pelt up and down pubs, make loads of noise or throw things. However, in an ideal world, my little boy wouldn’t have been neglected. He wouldn’t have an uphill struggle ahead of him and his development would not have been adversely affected by his start in life.

I can’t set ideal parenting standards for Little Bear (at the moment) because good parenting does not involve setting your child up to fail. I cannot ask him to sit still throughout a meal, be friendly and polite at all times, always walk and never run and never touch anything. I can’t ask that of him because I know that he is already trying his best and he can’t do it.

I have had to re-evaluate what is absolutely essential behaviour-wise and what is less so. I have had to decide which things I can turn a blind eye to and which things I will tackle. I can’t tackle everything at once because I would be telling him off every minute of the day and that is no good for anybody. For now I have a zero tolerance approach to violence and we try our best to follow instructions the majority of the time. Other issues are for later.

My parenting style with Little Bear can be summed up by “don’t sweat the small stuff” and “pick your battles”.

The only problem is that Mr and Mrs Public are not versed in this approach and actually often do want to sweat the small stuff. Last week, Little Bear got told off twice by strangers. The first time it was because he had lifted a glass lid in a café to show me which donut he wanted. The waitress walked past and sharply said “that is made of glass! It is not for you to touch!” The second time was because he was climbing on a wooden railing inside a family pub and the waiter sternly told him to get down from there.

As I was present on both of these occasions and the person in question saw fit to tell Little Bear off anyway, I can only assume that they felt my parenting was lacking. Were I to have the time or inclination to concern myself with this, I would probably be quite offended. However, thanks to Little Bear, I don’t bother sweating the small stuff either.

I can feel a bubble of something brewing though. One or two interventions from strangers I can take. A stare or glare here or there I can ignore. Maybe even a tut could be disregarded. I know that people are judging Little Bear against their standards of behaviour and finding him lacking. I know that consequently they see my parenting as lacking. I have grown a thicker skin and am mostly adept at shrugging it off. I am confident on the path I am taking and I have the benefit of understanding his behaviour, what could be causing it and also seeing the incredible progress Little Bear has made.

However, I know there is a line when it comes to strangers telling off my children and should someone see fit to cross it, I would not be able to hold back. Don’t be so bloody judgemental, I would want to say, you don’t know his background; you don’t know what he has been through. Don’t judge my parenting. Try walking a few steps in my shoes and then see how you feel.

My inner momma bear is poised, ears pricked up. Ready. Little Bear is my cub. He is my noisy, energetic, curious, infuriating mischief of a cub but he’s my cub and he’s trying his best and I will not hesitate to leap to his defence if provoked.

Consider yourselves warned Mr and Mrs Public. Consider yourselves warned.

Reports

It is school report time here at Bear HQ and once again it has got me all reflective. This time last year in Achievement I wrote about how standardised assessments and age-related expectations are not going to be the right way to measure Little Bear’s achievements.

Back at the start of his time in Reception class I had a bit of a wobble about how much was expected of him and how unrealistic it would be to ask him to meet those expectations by the end of the academic year (you can read about that in Little Bear Starts School). The expectations that are in place do not take into account a neglectful first several years of a child’s life or the significantly lower starting point that they are beginning from. After all, it would be impossible to expect a child to go from not being able to count to knowing all their number bonds to 20 in one year; or expecting a child who cannot write their name when they start school to be writing little narratives by the end of term. You wouldn’t expect a child with significant speech processing difficulties to be able to read fluently in one year or a child who is extremely resistant to adult direction to be fully compliant every day.

We did not expect Little Bear to meet the expectations as it was an impossible ask. I am not surprised therefore that he hasn’t met them. However, it would seem that I do have a little bit of an issue with the way the information has been shared.

The Bear’s school have switched to new-fan-dangled online reports. I understand why: OFSTED must love it and it must be much more time-efficient for teachers. However, call me old-fashioned, but I would much prefer an actual piece of paper (you can’t even easily print our ones out to keep for future posterity). There are lots of tabs along the top and you have to click on each to get different information.

The very first tab is a summary of where your child is at compared to expectations. On the left there is a scale with the following descriptors: well above expected, above expected, at expected level, below expected and well below expected. The core subjects are along the bottom and your child’s level is shown through coloured traffic lights. For Little Bear that means a row of red lights across the ‘below expected level’ line. They may as well flash and sound an alarm alerting you to your child’s lack of achievement.

Grizzly and I had a chat about this and he thinks I’m being oversensitive. He thinks it makes perfect statistical sense to do it this way otherwise what are you comparing your child to? My issue is that I don’t understand the point of comparing him to targets which we have already established to be unobtainable. Surely that is setting him up to fail? What I would like to see is a comparison between where he was at when he started the year and where he is at now. I don’t care where he is at compared to average Joe Blogs, that information won’t make any of us feel good. I understand that what I’m asking for is probably a complete data nightmare but in theory it would be a much more positive report because it would show the massive progress that he HAS made not what he hasn’t.

I asked Grizzly how he would feel if Little Bear were scoring right across the “well below expected range” or how he would feel if every report we ever get for Little Bear shows him to be in this “below expected” range. He’s much more pragmatic about these things than me and said well if that is where he’s at it’s where he’s at. Which is of course completely true but I can’t help feeling that this way of displaying data makes getting a report for a child with any level of additional needs a fairly negative experience. It certainly felt different to opening Big Bears and seeing his neat row of green lights.

The rest of the tabs offend me less. There is one with the teacher’s comment, one about behaviour and ones where you can see a list of targets your child is working on and which descriptors they have already met. I do find it a bit odd that the focus is on Maths and English and little else. What if your child excels at PE? Or Art? Or Music? There isn’t anywhere in either boy’s report where that can be reflected which could potentially add to the negativity for a child like Little Bear who struggles most with the core subjects.

Anyway, having come back to look at the reports again, I can see that maybe my opinion of Little Bear’s as a whole has been tainted by the red lights. The comments from his teacher are lovely and do mention “superb progress” and that he “has worked extremely hard”. It says he is polite and respectful to grown-ups but his attitude to his peers “needs to improve”. It says that he is happy and settled but that he does test boundaries and is still learning to remain focussed.

All of the above is true but what it doesn’t really reflect is just how spectacularly wrong this year could have gone and in comparison how fabulously he has done. That version might go something like this:

Although Little Bear does not always listen and sometimes hits his friends, he has had less than 20 red cards, he has not been sent to the Headmaster and has avoided getting himself excluded, all of which were real possibilities in September. The fact that he is described as being polite and well-mannered is nothing short of an actual miracle. He could easily have bitten/ scratched/ kicked or thrown something or told his teacher how stupid she is each and every day of term time. The control and self-restraint he has developed is fantastic.

On beginning school Little Bear could not count to 4 for the love of God and we were driving ourselves mad chanting the numbers over and over. He can now count easily to 10, forwards and backwards and is just a tiny bit more practise away from making it to 20. He can recognise all the number shapes to about 13 and is managing some very basic adding and taking away.

In September Little Bear was pretty much unintelligible to people outside of the family. He could just about recognise his name written down but couldn’t recognise any other words. He knew maybe 5 letter shapes. He couldn’t tell you if words rhymed or what sound they began with. He most definitely couldn’t blend sounds together. Now, he recognises all the letter shapes, which he learned surprisingly quickly. After a lot of hard work and perseverance he has mastered blending which is no mean feat and can read at a basic level. He has even gone up one reading level on to Red books which he is extremely proud of. Considering the fact that Little Bear was attending a Special Needs nursery before he moved here and the likelihood of literacy in his future was slim to none, his progress has been phenomenal.

At the start of term Little Bear could hold his pen well and could scribble but his pictures didn’t look like people and he couldn’t write at all. He can now write his name and draw a picture of himself with most of the right body parts. He can form letters really well and can copy from a grown-ups model. He can make some attempts at independent writing.

Little Bear is happy and settled at school. He has learned all the routines. He loves show and tell and is now confident enough in his communication to stand up and talk in detail in front of the class. He has taken part in assemblies and school trips and has behaved appropriately.

The year could have been a complete disaster. Little Bear could have been like a fish out of water. His behaviour could have been out of control. He could have struggled with all the learning and not made any progress.

Instead, I feel he has achieved above and beyond any expectations we could have had for him. If there were a chart for progress, he would have a row of bright green lights in the “well above expectations” row. Instead the row of red lights he does have seems to figuratively piss all over his bonfire. I am not finding some of the other parents’ bragging about how advanced their children are particularly helpful either.

Anyway, I shall brush myself off, endeavour to develop a slightly thicker skin and focus on what I know really matters: Little Bear has had an extremely successful first year at school. We have secured the funding we need to build on his progress next year and I have no doubt he will continue to exceed the limited expectations his early life tried to saddle him with.