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.

 

 

 

 

 

 

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Play

Talking is Crucial

We’ve had a flurry of activity here over the past week or so, with various people visiting us and several sleeping over at different points. Each person has come with their own story, most of which have made our day to day challenges pale into insignificance. Their stories are not mine to share of course, so I won’t, but reflecting on it all has left a few thoughts whirling about.

Firstly, talking is crucial. It is crucial in a very basic form: the form where it allows you to have your needs met. We know this as a family, having adopted Little Bear at a point when he couldn’t communicate well and there was more he couldn’t tell us than he could. We know it but sometimes a situation arises that reminds you. One of our guests was a family friend who happens to have learning difficulties. Her speech and language skills are very limited and even in the short time she stayed, we could see a snapshot of the challenges she faces every day. She couldn’t always tell us what she wanted to eat; she couldn’t tell us what she wanted to watch on TV; she couldn’t tell us why she did or didn’t want to do certain things. It must be incredibly frustrating, especially as she can understand much more than she can express (you can’t help but notice these things as a speech and language therapist and incidentally, be a little desperate to solve them).

I certainly feel as though life would be different for her were she able to say everything she is capable of, whether that was verbally or in another way. I also felt it must have been really scary for her, to come and stay somewhere she hadn’t stayed before, knowing she might not be able to get all her needs/ wants met. Imagine how vulnerable that would make you feel. I suppose some people might think that due to her learning difficulties she doesn’t think about these things but I know she knows her communication is different. I think she’s embarrassed about it and is certainly more reticent if there are a lot of people around or people she doesn’t know well. More words began to sneak out as she settled but there was still a huge disparity between the ones she comprehended and those she was able to verbalise at the point she wanted to say them.

I can’t help but think of the what-ifs. What if she’d had more/better speech and language therapy when she was younger? What if she did now? Is it too late? Is it ever too late? Should something alternative have been put in place? What should it be? Why wasn’t more offered? Did people think it was ok because of her learning needs? What if a young child presenting as she did when she was young was under speech and language therapy now? What potential would be seen in them? Would outcomes be different? I like to think so but given what we know of speech and language therapy services since Bercow10 (see Ensuring Children’s Speech and Language Needs Are Met: A Call to Action) I wonder…

Surely we should be striving for the most a person can do, whoever they are, instead of settling for the least we can get away with.

On another note, it was interesting to observe Little Bear with this person. Firstly it really highlighted the progress he has made with his communication. He is a competent communicator now; he can say everything he wants to say and mostly with clarity. It’s not to say that his speech and language skills are perfect, because they are not, but in general, if you popped him into a group of people he didn’t know well, he’d be ok communication-wise. I don’t mean to draw a comparison, because that’s wholly inappropriate, but the realisation that Little Bear has reached that point was a bit of a surprise. I worried for so long that he wouldn’t reach it that this little revelation is very welcome.

Along with this revelation came an uncomfortable truth. Little Bear is now able to use his communication skills for both positive and negative purposes and though he was mostly great with the lady I’m talking about, there was one point when he was tired and cottoned on to the fact that he was verbally wilier and could use his words to wind her up. It was weird to observe because I have seen it so many times directed towards Little Bear, from wilier peers. I tried to intervene to stop him as I could tell he was upsetting her but as he was on that trajectory where he couldn’t stop himself he carried on regardless and I decided to take him out of the situation and up to bed.

The incident had a weird, double-edged irony: I was sad to observe it and sad for the lady’s communicative limitations whilst being simultaneously disappointed that Little Bear would do it yet also noting it was indicative of his developmental progression. We talked afterwards about it and Little Bear could remember times when he wasn’t able to say what he wanted and times when he had to resort to other methods of getting his messages across, such as hitting out and I think he understood why he shouldn’t have exploited her communication difficulties as he had. He was sorry afterwards.

Although it feels like an important moment to reflect on, I don’t want to make it more significant than it was. Overall both boys were fabulous and just took all the issues of the past week in their stride. They are both very empathetic and I’m extremely proud of the kind, understanding, non-judgemental young men they are becoming.

At one point the lady I keep talking about gave Little Bear a bear hug that was a little squeezier than he might have liked. Initially he got a bit upset and took himself out of the room. When I went to him he started with the usual “I hate said person/ she hurt me/ she did it on purpose/ I hate her now” rhetoric but we had a little chat and I left him to calm down. The next thing I knew he was coming over to her, offering another hug but asking her to be more gentle. Again, I could see the progress he had made. Previously he wouldn’t have been able to put his communication skills to such good effect, would not have calmed so quickly and would have given said person a wide birth/cold shoulder for a lengthy period. I think the approach he took showed real maturity and I felt a glow of pride.

Our week also taught me that it is not just talking at the fundamental level of getting our most basic needs met that is crucial. Talking is also crucial to keeping us mentally well. Other guests we had were carrying other issues and when I say carrying them, I mean lugging about a massive sack of stress, hurt and grief wherever they go. The difference, I think, between that massive sack dragging you further down or you being able to get on with your life despite it, seems to be your ability to talk about it. The person who internalises or who does not have an available/ safe outlet for their worries and feelings is in danger. I know that sounds a little dramatic but I genuinely believe it’s true. There is a lot on social media at the moment about suicide prevention and all the statistics around the issue. It’s worrying.

Talking helps people take things out of their massive sack. Issues can become less, opinions can be sought, advice given, soothing words or hugs dispensed. Talking doesn’t make things go away but sometimes it can give perspective, space or a fresh view point. Things tend to multiply or expand or metastasise when left in the sack. Talking can curb things, keep them in check, prevent them taking on a life of their own.

On face value, one of our guests maybe seemed to have a lot of issues. They told me a lot of things. They seem to have a lot to worry about. However, I know that another of our guests, who said nothing, also has a huge sack of issues. It’s the one who said nothing that worries me. The one who talks spills the contents of their sack at regular opportunities and I’m glad they do. They have hard things to cope with but they’ll be ok. The other one, the one who doesn’t talk, I worry about them. I don’t know if they have that safe outlet, that trusted person, that someone who will just listen. I don’t know and I think their lack of being able to talk, even though they have the communication skills they need, is a red flag. I suspect it is not being viewed as such by people around them – they do not appear upset, they aren’t saying upset things ergo they must be fine.

Whilst talking is crucial, so is listening and both are required for mental wellness. I know many people who think they are good at listening but few who genuinely are. The best kind of listening is not just done with the ears; it is about observation, reading between the lines, hearing the unsaid. It is the ability, or maybe the willingness, to see beyond what is presented. I suppose it is about connection. I suspect not everyone thinks they have the time.

I also suspect that people don’t always think the same level of observation and alertness to emotional wellbeing is required for children; that somehow children are just fine. They aren’t and the ways they manage, or don’t manage, their feelings and worries and grief will follow them into adulthood and shape their future selves. This whole talking thing needs to start as soon as possible.

Sometimes I wonder if I’ve got too wrapped up in adoption and the issues it brings. None of the people who have been here this week are care-experienced. They are not adopted yet they have experienced trauma. I guess I’ve been reminded that we don’t know what sacks people might be lugging with them; these cumbersome burdens are often invisible. The emphasis is on us, as fellow human beings, to be alert, to look beyond appearances, to actively observe and skip the snap- judgements. Talking is crucial but so is hearing the unspoken.

It has been a funny old week.

 

 

 

Talking is Crucial

Dinner Winner

I have decided while I Am Writing to post some shorter blog posts for a few weeks about some products we have bought recently.

This week’s product is the Dinner Winner plate made by Fred.

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 Meal times have always been a bit tricky here, ever since we first met Little Bear. I suspect his development was disrupted around the weaning stage and when he first arrived I probably should have gone back to basics with introducing solids and different textures. He was over three at that point though and I was pretty distracted by many a pressing behaviour challenge. I did do purees for him and I have fed him on and off since.

Little Bear is six now and at mealtimes, especially tea time when he’s tired, he tends to mess with anything and everything but doesn’t focus his energy on eating. He will clamber over the bench, fiddle with his cutlery etc. but not touch his food. It has always driven us a bit mad but we have tried to be patient and to feed him if that’s what he needs.

I wasn’t looking for another solution but a few weeks ago I was flicking through a therapy magazine and came across these Dinner Winner plates. I immediately felt it would be worth a try because it is essentially a visual support for eating your meal. It evidently struck a chord with the speech therapist in me: it’s such a clever and practical idea and I couldn’t believe I hadn’t seen one before. We found you could buy them on Amazon and one was with us the next day.

There are lots of designs but I chose the superhero one as I felt Little Bear would like that one and it was a bit more grown up.

On the first day, the plate worked like a miracle. Little Bear LOVED it, especially the fact that there is a compartment with a lid for you to open at the end of your meal and hopefully find a treat. I explained to him that you start at the beginning and eat one compartment at a time. There was a risk Little Bear wouldn’t care about the order but he took that aspect very seriously and finished his dinner in record time. I don’t want him to rush but tea it is usually a very lengthy affair so this was a clear improvement.

The second day was similarly wonderful. After that, the novelty wore off a bit. However, I can honestly say that though the plate hasn’t delivered a miracle it has certainly improved things significantly. I think Little Bear is much less prompt-dependent now. Previously I had to prompt every mouthful or load his fork for him but now he does often feed himself the whole meal, without prompts, just with a bit of dithering between compartments. I now wonder whether seeing a whole plate of food was overwhelming for Little Bear and he was having difficulty breaking the task of eating into parts. The plate has done that for him and one compartment at a time is not overwhelming. Also, when one has gone, counting the remaining compartments gives a natural countdown to being finished which seems to help Little Bear with seeing an end to the task. Sometimes we are winning at dinner.

I don’t think the treat at the end would be appropriate for all children, depending on their issues with eating but it does work for Little Bear. One chocolate button seems to be motivation enough.

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On a practical level the plate requires a bit more preparation from me. I tend to serve his food onto a normal plate to check I’m giving him the right quantity and then I need to chop it up and divide it between the compartments. It is a bit more faffy but I feel as though it is worth it. The first meal he had on it was baked potato which obviously had to be modified a bit more than usual!

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Overall I think it’s a fabulous piece of design and a really clever use of visual support. I would definitely recommend it and this is not one of those blog posts someone has paid me to write!

As an added bonus, Little Bear practises his reading on the words written in the compartments. It’s a big thumbs up from me and my little dude.

 

Dinner Winner

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:

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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:

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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

Communication Difficulties: Update

Over the lifetime of my blog I have talked about Little Bear’s communication difficulties quite a bit: first of all in Living with Speech and Language Difficulties then later in A bit of a rantAnother try at SaLT and SaLT, EP & an Assembly. In the most recent posts I have focussed on our quest for formal speech and language therapy rather than Little Bear’s communication needs per se. As therapy has been going pretty well, I thought it was time for a look back at the development of Little Bear’s communication and how priorities have changed over time.

When Little Bear first arrived his primary communication need was to develop his listening and attention skills. Little Bear simply wasn’t tuned in to language – he ignored it in pretty much the same way you would ignore background noise. He didn’t see the point of it and sadly I don’t really think he thought it bore any relevance to him. Little Bear’s listening skills were poor which impacted on his ability to understand language and on our ability to get him to co-operate.

I can remember wandering around a beach with him during Introductions. In my typical SaLT fashion I talked to him as we wandered. I pointed things out and named what we saw. Little Bear found this completely alien and tried to shrug me off like a nuisance insect. I think he even took to shushing me. Equally he did not respond to his name or any other command. Getting him to behave and keeping him safe was incredibly difficult without the use of language.

Over time we worked on this, mainly by keeping listening fun to start with – lots of drawing his attention to passing noisy things such as aeroplanes or dogs or sirens. I definitely found that in order to engage Little Bear with listening, we had to start with non-language tasks. We were probably quite silly and playful too, which helped.

As Little Bear’s listening skills improved a bit, we were able to work on his comprehension at the same time. Probably as a result of the listening and attention issues, Little Bear’s understanding of language was certainly delayed for his age. We noticed that he often said “what?” and needed us to repeat things for him, sometimes several times. We all reduced our language from the beginning to help him understand as there was a clear pattern that the more complex the vocabulary or the longer the instruction/ explanation the more Little Bear struggled.

Little Bear’s vocabulary was very poor for a 3 and a half year old so we did lots and lots of modelling which has developed both his understanding and his expressive language. I think if I had to pick one strategy that has been the most effective I would say modelling. There are several reasons. Firstly you don’t need any equipment to model language – you can do it anywhere and completely spontaneously which makes it very practical within busy family life. You can easily work to your child’s level – either just modelling back their sentence without errors or by adding in an extra word to extend their sentence length. I would often have a couple of targets in mind at any one time e.g. for Little Bear to understand the concepts of same/different, so would model those concepts each time an opportunity arose in play or just when out and about.

You can use modelling to develop any aspect of communication – initially I used it mostly for vocabulary and sentence building. I have moved on to using it for grammar and speech sound accuracy. I don’t think I would have predicted that it would be as effective as it has been: Little Bear’s progress has been huge. The great thing is that it is a very positive approach and at no point has it felt like I’ve been nagging or correcting Little Bear. In fact he got so used to me using the strategy that if I didn’t model back his sentence after him he thought I wasn’t listening properly and would repeat himself until I did! This is in stark contrast to the boy who didn’t want me to talk to him at the beach.

Little Bear’s comprehension is now patchy on formal assessment. His understanding of basic concepts such as hot/cold, first/last, same/different is within the expected range. His understanding of different sentence types is at the low end of average and his understanding of complex sentences continues to be below expectations. However, in everyday life we have noticed leaps of progress.

I recall one day driving past some electrical cables that had come down in a storm. My natural instinct was to point them out and tell Little Bear about them but I remember stopping myself because I knew that he had no idea what electricity was and I wouldn’t be able to find a way to explain it that he would be able to follow. These days his wider understanding of life is growing all the time. I recently mentioned London in passing and he said “they had a nasty fire there, people died” and another time we were looking at a map and I said “that country is America” and Little Bear piped up “is that where Dobald (Donald) Trump is building his wall?”. He is full of surprises these days and it’s brilliant to see his understanding of complex concepts developing all the time.

Little Bear’s ability to express himself on arrival was also poor. I remember him saying “you came back” on the second day of Intros and this being quite a momentous sentence. On the third day he said “you came back again” which was poignant and sad and lots of things but also the longest sentence I heard him say for a while afterwards.

I don’t think it is any coincidence that Little Bear’s behaviour was as it was. His lack of ability to ask questions, negotiate, explain himself and talk himself out of situations certainly lead to a high level of frustration and anger and the unavoidable need for some very expressive behaviour.

For a long time Little Bear expressed himself through pointing and enthusiastic use of “that”. He had some stock sentences that all followed the same structure: I go running, I go playing, I go sleeping. He used the words he did have creatively to get his points across e.g.“bik” (big) meant lots, tall, deep, full, massive.

Little Bear’s expressive language now comes out as being within the expected range on the Renfrew Action Picture Test. I don’t honestly think this is an entirely accurate representation of his abilities but he does use lengthy compound sentences and I have noticed that being able to do so has helped him in many ways. Just today he had his IPad in the car and I heard a crash as though he had thrown it on the floor. “Did you throw that?” I asked him, “No Mum, I tried to put it on the seat but you went too fast and it slipped on the floor”. I have no idea if this was true but I had to credit him with the good explanation. Previously I might have wrongly assumed he had chucked it and he might have got into trouble and not been able to defend himself. Having improved language skills has definitely helped with behaviour in more ways than one.

A big indicator of Little Bear’s progress with his speech and language skills is that now he is having formal SaLT our agreed priority is his speech sound system. It is generally agreed that language should be the main priority with speech being more of a secondary skill. Our decision to focus on his speech is due to his language skills being good enough and his speech now being the biggest barrier to his communication. It is funny how priorities have changed.

Little Bear’s speech was pretty much unintelligible at the start. Then we tuned in and as he didn’t have many words it didn’t take long for us to be able to translate. That was all well and good until his vocabulary sky rocketed and then we were back to having no idea what he was trying to say again.

Using mainly the modelling strategy we have targeted voiced/ voiceless confusion (“beas” for ‘peas’), articulation of ‘l’ (there was a little more than modelling involved in that one but not much), production of l clusters (pl, cl, sl, fl etc) and some random inconsistent/ storage errors e.g. “gog” for ‘dog’, “nogat” for ‘yoghurt’, “mu-ey” for ‘money’, “di” for ‘dummy’ etc. However, despite all that, at the start of SALT, Little Bear was still fairly unintelligible to the therapist at the age of 4 and a half. It transpired that his vowels were jumbled which was resulting in very unusual sounding speech – his teacher had even asked me if he was foreign.

At this point, although I am a SALT and had worked on lots of aspects of Little Bear’s communication myself, I was glad and relieved to have another therapist on board. Vowels are complex, they are in all words and I couldn’t really see the wood for the trees. I was pleased to have somebody to defer to for clinical decision making. She didn’t really know where to start either so after identifying which vowels were going wrong, we pretty much just plumped for one to have a go at. It was ‘eye’ as in pie, pipe, kite, nine, five etc (for non-SaLTs think about how they sound, not how they are spelled). It turned out that Little Bear could make this sound and he could say it correctly after a consonant e.g. pie but as soon as a consonant was added after it (pipe) the vowel distorted. In this example it became “pap”. Little Bear could hear the difference between pipe and pap which helped.

Once we had figured this out and done one session of therapy, Little Bear had cracked it and was spontaneously generalising the sound. We were both unprepared for it to be that quick. I was also surprised by how often that vowel crops up in English and therefore what a difference working on it made to his intelligibility.

We have since worked on ‘ow’ as in house, mouse, brown which were coming out as has, mas, bran. Little Bear acquired ‘ow’ in much the same way as ‘eye’. We then tried ‘err’ for no particular reason other than because it was another he couldn’t say but for some reason that one just isn’t coming so we have switched to ‘ay’ as in pay, plate, eight. Little Bear can say it in words but is not generalising it as yet. I am now getting a bit tangled up with which vowels I need to model for him!

The formal therapy is pretty good though it is not completely plain-sailing.

I had thought it would be helpful for me to keep in touch with the therapist via e-mail between appointments so I could keep her updated and take away the need for her to change her session plan on our arrival – this happens most weeks due to Little Bear’s unexpected/erratic rate of progress. However, apparently this would be against policy which seems odd to me. I frequently used to use e-mail to keep in touch with parents and think this is a missed opportunity.

Also, it turns out that Little Bear is now entitled to therapy in school because he has top-up funding. However as his speech requires specialist input from a therapist only, he has been deemed more appropriate for clinic therapy. I suggested that maybe the funding could be used to train school staff to work on his language targets alongside this. Apparently it cannot be done because the school team and the clinic team are separate and you cannot be on two lists at the same time. Whilst I get this, I can’t help feeling frustrated at the lack of flexibility and feeling a little like he’s missing out on his entitlement. A system with two rigid lists does not have children and their individual needs at the centre of it.

Either way, Little Bear continues to make fabulous progress and for that I am extremely thankful.

Communication Difficulties: Update

SaLT, EP & an Assembly

It has been a busy week at Bear HQ for meetings with professionals and thinking about Little Bear’s needs. On Wednesday we had our second session with his Speech and Language Therapist (SaLT); on Thursday Grizzly and I met with school and the Educational Psychologist (EP) and today Little Bear had an assembly and his first taste of public speaking. Each event has been thought provoking in its own way.

SaLT Session 2:

This week’s session consisted of further assessment and rapport building. The Therapist is continuing to impress me. This week she gave me the assessment findings from the previous week as she said she would. I find it is all very well professionals promising things but it is the actually doing them that earns brownie points.

The results are interesting, with scores ranging from the 5th to 75th percentiles. For those not familiar with percentiles, a score at the 5th percentile means that if you took 100 children the same age as Little Bear, he would score better than only 5 of them but at the 75th percentile, he is scoring better than ¾ of them. It is an unusual and atypical scoring profile. You would usually expect children to have a cluster of scores round about the same level across all of their skills. As all of these scores relate to his comprehension (understanding) of language it is even more unusual but nevertheless it is as I had expected for him.

Little Bear scored well on his understanding of basic concepts such as hot/cold, same/different, in/on/under. We have worked on these concepts so I would expect his knowledge to be fairly good. The longer or more complex an instruction became, the more difficult Little Bear found it to follow. Instructions containing more complex concepts such as before/after and ‘all except’ were also tricky for him. This fits with our feeling that he can understand a lot more than he used to but that we still need to simplify our language and that the more complex an idea is, the more repetition Little Bear needs.

His grasp of different sentence structures was at the lower end of the expected range and was impacted by his lack of awareness of pronouns.

Despite all that, the scores do also reflect positive progress as at first assessment (when he was seen briefly by a private provider in his pre-school) all his scores were at the 1st percentile. That shows me that his attention and ability to be assessed has improved as well as SaLT input having being effective. Working on language really does make measurable differences in performance. It will be  interesting to see how his scores change over time, especially now that he is having formal therapy alongside the things we do at home.

The Therapist gained more brownie points as she had evidently reflected on Little Bear since our last session. She had noted the unusual quality of his speech and had suspected his vowel sounds might be distorted. This is not a typical pattern of errors and is not a part of “normal development” i.e. most children make speech errors when they are first learning to speak. The errors usually follow a pattern e.g. back sounds such as ‘k’ are made at the front of the mouth instead sounding like ‘t’. This is an expected part of development and it usually rights itself as children develop. However, making vowel distortions is not a typical developmental process. In fact it is fairly rare and neither Little Bear’s Therapist nor myself have ever tackled it in therapy before. Little Bear’s Therapist could have pretended to me that she did know what to do and could have just made up some therapy as she went along. However, she identified that she needed to know more and discussed Little Bear with a colleague who specialises in hearing impairment and would be more knowledgeable about vowels. Consequently she now has a more targeted assessment that she is going to try next week. I find this honesty and seeking of support reassuring. It is important to know when you don’t know. In my view, it makes her more competent, not less. There is nothing worse than somebody who doesn’t know that they don’t know (“unconscious incompetence”) and just blunders on anyway.

The other thing this conversation did for me was provide me with relief that finally another professional (who isn’t me) has identified that Little Bear does not have run of the mill SaLT difficulties and that between his spiky language profile and his dodgy vowels, he does have a Speech and Language Disorder not a straightforward language delay. For any SaLT’s reading, she has not used the new terminology of “Developmental Language Disorder” yet, a term which I do think applies. It will be interesting to see whether she does as we go forwards.

Meeting the EP again

We first met the EP a few weeks ago when we had a consultation meeting. You can read about it here: Seeing the Educational Psychologist

Since then he has spent a morning in class with Little Bear. He observed and played with him and took him out of class for some formal assessment. His teacher told me on the day that Little Bear had been exceptionally well behaved and she wasn’t sure the EP would have seen all the things we had been worried about.

Interestingly the first point that he raised at our feedback meeting was that he had noted Little Bear playing well and interacting appropriately but mostly minding his own business. He had observed on a number of occasions that some of the other boys were quick to blame him for various things when in fact he hadn’t done anything wrong at all. We have had our suspicions about scapegoating and other children exploiting Little Bear’s difficulties with communication but it is different to have that confirmed by a neutral professional. Obviously it is completely wrong and worrying because nobody wants their child to be victimised. I am glad that school are aware of it but I do understand their difficulty in policing everything that happens as they can’t be everywhere or see everything. We shall be keeping a very close eye though.

In general, the EP was pleased with Little Bear’s social and play development. He had carried out some assessment and that showed Little Bear’s non-verbal (cognitive) scores to be around the 10th percentile (below average) and his verbal score to be around the 38th (within the average range). This result is completely at odds with my hunch which is that Little Bear has good cognitive skills and significantly poorer speech and language skills. I think there are a few reasons why it may have come out this way:

  • We have worked A LOT on language and Little Bear has made a lot of progress. We have probably worked on the types of activity that were used in the verbal assessment but not on the ones in the non-verbal bit so he was essentially more practised at the verbal one
  • The verbal assessment used won’t be as accurate as anything used by the SaLT
  • It is difficult to truly separate verbal and non-verbal abilities when so many activities intrinsically rely on language knowledge. The EP talked about picture matching activities such as bird with nest and dog with ? This type of task relies on a child’s knowledge of vocabulary and the meaning of words (semantics). It relies on them having good semantic links between words, something I suspect Little Bear doesn’t have. He does have a lot of words now but I suspect they are stored in a jumble, not nice and orderly and therefore it is hard for him to find the ones that should go together. I feel this says more about his language ability than his cognitive function.

Although the EP is lovely and I have found him very useful, this just highlighted to me how pernicious language difficulties are and how difficult it is to get even very educated professionals to truly understand the impact of them. I am so grateful that I finally have another SaLT on side who really does GET IT. I hope.

The rest of the meeting was taken up with reviewing the strategies already put in place. I was very pleased that school were able to give detailed feedback so are evidently using the strategies and they seem to be working well.

We also discussed transition to year 1. Thankfully Little Bear’s teacher is going to move up with him which assuages a lot of our concerns but it is the jump from EYFS provision to more formal learning that is worrying us all. Little Bear is certainly not ready to sit at a desk all day or to complete learning tasks independently. School are absolutely brilliant at providing him with the specific intervention he needs but we have all agreed to apply for funding in the hope that this will secure ALL the right things next year, when a TA in the classroom is not a given. Next week’s job will be completing all the paperwork…

Assembly:

During the Easter break we were tasked with helping Little Bear learn his words for today’s assembly. I was a bit concerned as only a couple of months ago, Little Bear struggled to hold 3 numbers in his auditory memory long enough to repeat them back to me. Learning words was not going to be easy for him. Yet today he stood up in front of the whole school and a load of parents, walked sensibly to the microphone and speaking loudly, without any sort of prompt, said all of his words: “Every day we are running or walking a mile and its keeping us fit and healthy”. I don’t think everyone understood what he was saying but I don’t care because it was a phenomenal achievement for him.

I have just picked him up from school and he has the dreaded take home book. I absentmindedly flicked through it when he handed it to me and was shocked to see pages of children’s handwriting. “Oh God, look at this” I said, waving it under my friend’s nose. “Don’t worry” he tried to reassure me “they’ve had that for a week”. I didn’t like to tell him that it wouldn’t matter how long we had it for, Little Bear still wouldn’t be able to write more than a copied or dictated very tiny sentence. It is SO hard not to compare and not to feel disheartened. However, I know that my gorgeous little dude is working as hard as he can with every fibre of his being and in his language disordered world, learning 16 words off by heart is incredible. Writing or no writing, he’s still incredible.

 

SaLT, EP & an Assembly