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.

Advertisements
Unwanted Changes

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.

IMG_1077

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.

 

 

 

 

Interoception

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:

FullSizeRender (11)

 

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?

 

Fantasy versus Reality

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 22nd 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:

FullSizeRender (10)

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?

Developmental Language Disorder

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.

Parenting in Public

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.

Reports

Jigsaws

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

Jigsaws