DLD & Education

Today there has been a web chat run by @DLDandMe all about the impact having a language disorder has on a child’s education. It is part of their wider work to raise awareness of Developmental Language Disorder  (DLD) and to spread the word to a broader audience, about what DLD is, how to recognise it etc. I joined in a little, although late, but I thought it might be useful to share more detail about this topic, from our own personal experience.

As most readers already know, I am both a speech and language therapist and Mum to our seven year old son – LB – who has DLD. There is a complication to our story, which is that LB experienced early neglect and didn’t come into our lives until he was three and half. It is pretty impossible to pick apart the different impacts of neglect and DLD, with both having made their mark. However, it was clear from fairly early on that the communication difficulties LB experienced were more significant than delay alone and where progress was quite quick in some areas, speech and language has always proved more challenging for him. As much as possible in this post, I’m going to focus on the specific ways DLD has affected LB’s educational progress, notwithstanding the separate effects trauma has had.

LB’s DLD impacted on all areas of his communication development when we first met him – including his ability to understand language (comprehension), his auditory memory, his ability to use words and make sentences (expressive language), his ability to listen and pay attention, his ability to speak clearly and his social communication. When I talk about his presentation back then, in workshops and the like, I can see that it shocks people. And it was shocking, because LB’s language system just couldn’t do what he needed it to – not one part of the complicated whole functioned as it should have. He was very much trapped inside of himself and he wasn’t left with many options other than to express himself through his behaviour.

In the early stages of his pre-school education, this impacted him in a myriad different ways. He was certainly delayed in learning concept words such as his colours, size words, same/different etc. which meant he just couldn’t follow much of the teaching or express answers to what nursery staff would likely consider easy or every day questions. That said, with specific teaching of one concept at a time and plenty of reinforcement in everyday activities and play, LB was able to close the gap pretty quickly. It isn’t that LB can’t learn, because he has developed phenomenally quickly, it’s just that he couldn’t pick these concepts up from the ether, as children with typical language skills would. He required specific teaching, repetition and showing, to get them to stick.

Obviously, struggling with comprehension made it even harder for LB to learn new things. There must have been much of what went on in Nursery that he couldn’t follow. This no doubt exacerbated his difficulties with listening and attention, because it is extremely hard work for anybody to focus on language they don’t comprehend. Imagine having to listen to French or Urdu or Finnish or any other language you aren’t familiar with, for large swathes of each day. It would be exhausting and it wouldn’t take long until you stopped listening. Therefore, in some ways, LB’s DLD exacerbated his DLD. He certainly coped better on a 1:1 and thankfully we were able to provide him with this because I was on adoption leave and he just went to pre-school for a few sessions (and now he has TA support). Keeping distraction levels down and matching our language to the level LB could cope with, was imperative. It meant we could keep language accessible for him most of the time and choose which concepts or structures we wanted to stretch him with. I guess this is where my professional background came in – I suspect creating these ideal learning conditions would be much more difficult for a child whose parents are new to the idea of DLD and whose pre-school setting don’t get it.

Certainly as LB’s comprehension developed, so too did his ability to learn. I know it sounds a bit ridiculous but he did appear to be growing cleverer. I maintain that had he have had a cognitive assessment at the beginning, and one a couple of years later, he would have climbed the percentiles. This is because learning and education is generally acquired through the currency of language. As he acquired more words, he knew what more things were. He was able to express how things work. He was able to enquire and find more information out. The more language you have, the better you become at gaining it. Initially, we just couldn’t have talked about complex ideas such as electricity or natural disasters or endangered animals or health conditions. LB didn’t have the vocabulary to access a discussion or explanation about such things so he essentially wasn’t able to learn about them. It was only when he had gained sufficient depth and breadth of vocabulary and could listen to and follow longer structures, that he was able to develop his knowledge of the world around him. And when this did happen, it was amazing to witness the world opening up to him.

Vocabulary acquisition was a huge ongoing challenge for LB (and me) for a long time. Initially, even though we used lots and lots of modelling strategies, he didn’t seem to be growing a larger vocabulary. Again, like with other aspects of his language system, the more he heard a word used and the more times he managed to store a new one, the better his language processing system got. He has certainly got quicker at acquiring new words, even if this continues to be hard for him. Evidently LB’s language processing system (the bit of our brains that hears words, de-codes them, decides what sounds are in them, and their meaning, and stores them in an organised way, ready to be spoken) was not well-developed. It was laborious for him to use it, meaning that getting his vocabulary as big as he needed it to be must have been an exhausting task for him.

Where LB would once have needed to hear a word used around him for several months, with a high level of repetition, before being able to store and use it, he can now store a new word almost immediately. This has had a huge impact on his ability to be able to keep up with the curriculum. Each new topic brings a cornucopia of new words, which children are expected to immediately absorb in order to follow teaching. If you can’t understand the new words, it’s extremely difficult to follow the new lessons.

Although speedier, LB’s processing system remains inaccurate – he struggles to de-code words so that, without help, he might store ‘Corvette’ as “courgette” or ‘submarine’ as “subramine”. He is aware of this so often requests help – just having someone break a word down into bite-size syllables is a huge help to him and allows him to store a new word correctly. At school he has word webs for new words and is building up a personalised dictionary with his TA.

Despite all the hurdles, LB’s comprehension skills have caught up. He seems able to access the vast majority of teaching in his year 2 classroom without too much difficulty. He does cope better with multi-sensory teaching and visual supports (such as narrative grids, Mind Maps etc.), not least because they help to hold his attention. When LB is tired, his skills in this area do diminish a little and he might need a bit more repetition but overall I think his progress underlines what the right speech and language therapy input can achieve for children with DLD.

LB’s difficulties with auditory memory have impacted in several ways – most notably on his ability to blend sounds together and to learn listed information. Literacy acquisition was always going to be a challenge for LB, as his speech continued to be unintelligible well into year 1, with vowel distortions, and his sound awareness skills (identifying the first sound in words, rhyme, syllables etc) were poor. Even the pre-reading task of describing what’s happening in a picture was ridiculously difficult, because LB didn’t have the sentence structures or vocabulary he needed in his expressive language – something else we taught specifically.

We worked hard on sound awareness in a stepwise manner – identifying the first sound of short words then longer words, then the last sound of short words etc., alongside attending speech and language therapy. Again, I feel that good phonological awareness skills are something LB wouldn’t have been able to acquire organically, but he was very much capable of achieving on a 1:1 basis with a personalised approach.

We stumbled at the point of blending sounds together – a critical final step before literacy could be gained. The difficulty it turned out, after a bit of ‘diagnostic therapy’ (again, thank goodness for my career) was the blasted auditory memory which was struggling to hold three sounds, let alone stick them together. Once more, practise paid off and eventually LB could blend. Which, having already learned his letter shapes – pretty easily, it was a visual task – meant he could read. Progress has been steady since that point, with him progressing through the reading levels as you’d expect. In my opinion, a good phonics approach is essential for a child with DLD. It was a challenge to establish that strong foundation but once it was in place, it served LB well. He is not yet meeting the expectations of the curriculum but his reading is good; he understands text and he can apply his phonic skills to decipher most words. Crucially, he loves books and listening to stories. Keeping things as fun and engaging as possible is another essential tool in encouraging a child with DLD.

However, LB is not yet ready to apply his phonic skills to writing, finding this laborious. The addition of SPAG requirements such as including a noun phrase, or adverbial, pretty much renders writing the very worst aspect of school life for LB and, in my humble opinion, totally takes the fun and imagination out of it for all children.

It is hard to get LB’s teachers to understand just how many demands writing places on the language system of child with DLD. My hunch is that when his reading skills are better still and he’s had more specific phonics teaching, his ability to spell will improve. I suspect that expressing himself on paper, with appropriate grammar, will always have its challenges.

The other area auditory memory difficulties have impacted is LB’s ability to learn listed or sequential information such as the days of the weeks, months and, perhaps most crucially, how to count. Learning the numbers to ten proved extraordinarily challenging for LB so that when he started school, aged 4 and half, he couldn’t count to three in the correct order. The knock on effect of this was that Maths was pretty much impossible. How can you do sums when you haven’t the basic language for it? When “4” or “732” are just as meaningless and unquantifiable? This certainly held LB back and for the first year, perhaps two, of his education, his literacy skills appeared better than his numeracy ones, which lagged significantly behind. However, all the repetition and visual representation eventually paid off and LB learned to count to 10. And then 20. Very soon after that, probably because he could use his logic and ability to see patterns, he could get to 100. Once he had the language, Maths wasn’t so hard at all. In fact, it looks as though LB will meet the expected levels of the National Curriculum for the first time this year, which is no mean feat, given his starting point. Now that he has the language, even the reasoning SATS paper is accessible to him, despite the problems being presented in word form.

Having DLD has made every aspect of LB’s education more challenging for him. However, with the right support, LB has proved over and over again, what children with DLD can achieve and how crucial getting that support in place is. Language underlies all learning and we ignore that at the peril of children with DLD.

 

 

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DLD Awareness Day 2018

It’s been a hefty week for blog-fodder with both National Adoption Week 2018  and International Developmental Language Disorder Awareness Day (Friday 19^th October) landing at the same time – two events I am always keen to talk about.

This year’s theme for DLD day is the ‘ABCs of DLD’. The ‘A’ represents assessing our understanding of DLD. If you want to test how much you know, you can take this handy  Quiz

When I reflect on what I know about it, my professional experience as a speech and language therapist has mainly been usurped by my experiences at home, parenting my son who has DLD. He is currently 6 years old and in Year 2 at school. He has been discharged from speech and language therapy because his scores for both comprehension and expression of language now measure within the expected range for his age. A key thing I have learned is that with the correct intervention, children with DLD can make incredible progress and can catch up (see Speech Therapy Works  for more detail).

Although Little Bear has made unbelievable progress, he does still have DLD. He largely copes well day to day but there are specific times when I notice a difference in how his language system works compared to other people. One time is when he tries to learn a new word or a new name. Little Bear requires much more repetition of unfamiliar vocabulary and often needs me to break new words down into syllables so he can learn them in manageable chunks. He is very good at learning and retaining new words now but the processing part of his speech system isn’t as smooth as it should be and he would struggle to store new words without some specific teaching. If he doesn’t have help to ensure he understands what a word means and what all the bits of it are, he might struggle to say that word correctly e.g. ‘Emily’ recently came out as “Elle-uh-me” and ‘Joseph’ as “Jo-Fitz” or he might mis-store the word e.g. when Little Bear puts on a tall pointy hat, he says he’s being a ‘lizard’ (he means wizard) or he tells me to find things on the ‘window sledge’. Little Bear also uses ‘about’ instead of ‘without’ so will say, “It’s hard to sit on this chair about falling off it.”

Little Bear has good awareness and he knows he’s making the sound errors (he isn’t always aware of the naming errors). He often looks to me at these points to do a bit of speech therapy on the fly to help him. Children with DLD are not un-intelligent. They can learn and retain information like other children, as long as the information is presented to them in an accessible way and/or suitable strategies are employed to help them.

Little Bear’s DLD is also noticeable when he is tired or when he is faced with too much auditory information. He still copes better if large chunks of information are broken down for him and in a conversation it helps him if you are willing to repeat some parts of what you’ve said. He does generally understand the concepts you are talking about and any explanations you give to help him but he can need a little longer to process them, more pauses and sometimes a second chance to listen to the information. If words sound very similar, Little Bear can struggle to differentiate between them e.g. fourteen vs forty, which can impact on his understanding of what he’s heard.

Most of the time, Little Bear can express his thoughts and ideas competently with language, even if they are complex. Occasionally he forgets to reference what he is talking about and we have to ask a few questions to catch up with him. There are some parts of grammar that he makes occasional errors with. We still use modelling strategies at these points.

I think it can be difficult for people who don’t know him well or teachers to see his DLD straight away. Now that his speech sounds are much more accurate, his language difficulties appear more subtle. It isn’t a surprise that DLD is a hidden condition and is widely underdiagnosed or misdiagnosed (see Ensuring Children’s Speech and Language Needs Are Met: A Call to Action for more info).

This brings me to the ‘B’ of the ABCs of DLD – build knowledge.

If you’d like to read more about what Developmental Language Disorder (DLD) is, you can read this previous post: Developmental Language Disorder

DLD is much more prevalent than most people think – 7 times more common than Autism. If you want to estimate how many children are likely to meet the criteria for DLD in your school, you can use this calculator tool: Calculator Tool

A particularly useful source of information to expand your knowledge of DLD is the new RADLD website: www.radld.org

As DLD is often hidden or missed and the consequences of lack of diagnosis/misdiagnosis are so concerning (increased likelihood of unemployment, mental health difficulties and involvement with the criminal justice system) it is imperative that we work together to raise awareness, hence ‘C’ is for create awareness and is my main focus for the day.

Here are some of the things I will be doing to create awareness:

• Emailing my children’s school to share information about DLD and the RADLD website
• Sharing information on my social media channels including tweeting with the hashtag #DLDABC throughout the big day and sharing #my3forDLD
• Sharing this blog
• Wearing my newly printed RADLD campaign t-shirt and hopefully explaining what it’s all about to people who ask me
• Our local newspaper has agreed to print an article I’ve written about DLD on the 18^th. It is going to include a photo of me wearing my campaign t-shirt (their idea, I’m a bit scared and frankly too many people have seen my face this week already!).

 

If you’d like to join in with the fun and make a difference at the same time, you can:

• Use the hashtags #DLDABC and #my3forDLD on Twitter, sharing knowledge, thoughts or ideas
• Share this blog far and wide
• Tell one person what DLD is
• Contact your children’s school to let them know about DLD Awareness Day and the RADLD website (feel free to send them this post)

 

If you have any concerns about your child’s language development or a young person you are working with, contact your local speech and language therapy service. Getting the right support has made an enormous difference to Little Bear. I asked him what difference it had made: “A lot. A big difference because I wasn’t good at talking. It was tricky. My talking is lots better than before. Miles better! I’m good at writing now.” He went on to say that speech therapy was fun and he missed ‘the lady’.

It is never too late to put support in place. Ideally, identification of DLD would be early and support would be tailored and intensive but if the signs have been missed, it isn’t too late. Support in the teenage years continues to be effective.

Teachers, health visitors, social workers, the police, lawyers, people who work in public services (amongst others) all need to know about DLD. They need to know it exists so they can be better at spotting the signs. When we see disruptive behaviour, particularly in classrooms, we need to consider DLD. If we want to improve outcomes for children like Little Bear, we need to spread the word; we need people talking about DLD. Let’s see if we can make that happen…

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.

 

 

 

 

 

 

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.

 

 

 

Speech Therapy Works

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Speech and Language Therapy works.

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

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

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

 

 

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

 

 

Football: A Yardstick for Progress?

Back in the summer of ’15 (no, I am not re-inventing a song) Little Bear had just arrived. It was both a blessing and a curse that this momentous event had taken place during the summer holidays. It was great because it answered the question of how we were going to possibly manage meeting our youngest son a couple of hundred miles away whilst also managing the needs of our elder school-age child.

However, once we were back, the days stretched out interminably ahead of us. Grizzly and I were both on leave and there was no school or pre-school to give some much-needed structure to our days. There was just us and a very unruly seeming energetic mass of a child who at the very minimum needed to be kept out of immediate danger all the livelong day. With the benefit of hindsight I can say that he was traumatised and emotionally at sea. At the time I don’t think we quite knew what had hit us and I’m pretty sure we had barely a second to think about it.

We discovered, within the first hour of his arrival, that being inside the house with Little Bear was kind of difficult. He could not be contained in one room and wandered, nay prowled about, seemingly looking for the most dangerous or unwanted (by adults) tasks to engage in. He was everywhere: up shelves, in cupboards, under furniture. Little Bear was not in any way tuned into language so didn’t respond to any verbal means of trying to shape his behaviour. We spent the first weeks trailing after him, like a Police dog trailing a criminal, trying to anticipate what he might do next, trying to keep up with him, trying to offer distraction. We had to physically remove him from dangerous situations, which triggered his fight response and we were often bitten, scratched, hit or kicked.

It quickly became apparent that we might fair slightly better outside. Wide open spaces were good because there weren’t many things you couldn’t touch and Little Bear could be freer. Obviously the not responding to language thing was tricky, especially when you wanted him to come back. There was many an occasion when Grizzly had to sprint after him but notwithstanding that, things were easier.

You cannot actually live your life in a field though so we did have to try to make do with our small-ish back garden some of the time.

Left to his own devices, Little Bear would have spent the whole day watering the garden with the hose until a flood came and we would have needed Noah on speed-dial. We did of course allow Little Bear some hose time but it was essential we introduced some parameters if we were ever going to gain a modicum of order. As an aside, on one occasion of supervised hosing, Little Bear accidentally caught the sunlight at just the perfect angle to create a rainbow. It was one of the first times he responded to my communication to “look” and together we shared the same reference point and together marvelled at the amazing rainbow. I remember feeling more happy than you might think about that because I had actually reached him. After that we often tried to make a rainbow collaboratively and he began to see the point of me in an interaction. He also learned the word “rainbow” which was a big deal in his otherwise depleted vocabulary.

While the rainbow moment was a mini-turning point, I still did not want a flooded garden and knew that Little Bear needed help to engage with other outdoor activities too. Big Bear was 6 at this point and had recently got very into football. He was keen to be outdoors and was never far from a ball. Little Bear was also interested in the ball and generally ran straight though the middle of a kick-about with the sole purpose of nicking said ball. This was incredibly annoying from Big Bear’s point of view.

We tried to explain that Little Bear was little and didn’t understand games yet or that there were rules and he was really just trying to play. Big Bear could entertain this type of reasoning and would try to follow Little Bear’s lead. Little Bear would pick up the ball and run off, saying ‘catch me’ and looking for you to chase him. Big Bear or one of us would oblige. As he was shouting ‘catch me, catch me’ that’s what we tried to do. Only, when we did catch him, all hell would break loose. I guess because when the catching actually happened he decided he didn’t want it after all. I suppose being grabbed by people you aren’t sure if you trust yet is pretty frightening.

Little Bear would cry, we would be scratched. We would try some reasoning but Little Bear couldn’t process it. Five minutes later Little Bear would be running off with the ball shouting ‘catch me, catch me’ and the whole merry-go-round would begin again.

It was very difficult to manage or to see how to manage it a different way. All we knew was, it was a very inauspicious start to a footballing career and we probably had not just adopted the future David Beckham.

In the summer of 2016, things had developed a little. Big Bear was now getting good at football and wanted to practice properly. Little Bear had fallen totally in love with his brother and wanted to do whatever he was doing. If Big Bear was playing football, Little Bear was close by. Unfortunately he still had a penchant for ball-snatching and though Big Bear is extremely patient with him, it really did push his patience to breaking point. Most football games ended in one or the other or both in tears or storming off.

By this point Big Bear was pretty knowledgeable about the rules of the beautiful game and both he and Grizzly did their utmost to teach the basics to Little Bear. There were a few problems. One was that Little Bear could be (and still can be at times) rather oppositional so rules were like a red rag to a bull. If you told him he wasn’t allowed to pick up the ball, his first urge was to pick up the ball. Another problem is that Little Bear had very poor resilience then and the smallest knock or comment or his own perception that he had done something bad would be enough to cause him to purposefully kick the ball out of play or boot it at someone or call someone a name or hit them. Football continued to be a source of stress, distress and very little enjoyment for anyone involved.

Thankfully for Big Bear, he played football at an after-school club and he joined a club outside of school so he could get his fix somewhere. Interestingly, he had had a rough time because he didn’t like football when he was younger and it had really impacted on his ability to be accepted by the other boys. We had been reluctant about allowing him to join a club as it can be so competitive and the last thing we wanted was for his confidence to take a further knock, for example by being kept on the bench if he wasn’t perceived to be good enough.

Grizzly researched all the options and found a club with an inclusive ethos where all children get an equal go, irrespective of how good they are. Despite our reservations, it was a fantastic experience for Big Bear and did wonders for his confidence, both inside and outside of school. He continues to play for them now and apart from a recent appearance of nerves (a whole other tale, there is always something!) he loves it.

By the summer of 2017 a glimmer of football-related hope began to appear. Little Bear was beginning to tolerate the rules. He accepted they were there but was often in conflict with himself over sticking to them. He was still easily upset and something like the other team scoring a goal could be enough to cause a bit of a situation. However, the situation was generally less dramatic than before and mostly involved him stropping off to a corner of the garden for five minutes.

Alongside this, Little Bear’s language skills had now developed unrecognisably. We could start to talk about how he was feeling and what might be causing his behaviour. We could say things like “I think you are feeling a bit frustrated because the other team scored. That’s ok. Sit there for five minutes then join in again when you’re ready”. We generally didn’t make too much of a fuss and often if we ignored the outburst he would just join in again a few seconds later by himself. We always praised the good decision he had made to come back. We also tried some other techniques like bringing a squidgy stress toy outside with us and Little Bear would go and squeeze that if he was getting annoyed, rather than shouting at somebody or running off with the ball.

Football still had its moments but as the summer wore on I realised that the boys were starting to have a kick-about on their own after tea, while I did the washing up (handily positioned in front of the back window where I could keep a watchful eye). More often than not, the game would go without hitch and I would silently count my blessings when they came back in. They even started to set each other up for specific bits of play e.g. Little Bear would throw the ball so Big Bear could volley it in. Maybe football could be fun in the Bear household after all?

Not long after term started again, Little Bear began asking to join the after school football club that Big Bear attended. I had a lot of concerns. He is extremely tired after school, making listening harder than usual. We were having a very rough phase in the classroom and Little Bear was frequently in trouble for being disruptive. The guy who runs the football is lovely but not especially firm and I’d always rather suspected the children ran amok. Little Bear is not a child who should be allowed to run amok. It is not wise. It could be extremely detrimental.

Little Bear clearly wanted to go though and I had to listen. I decided this was a rare time that a sticker chart might work. I was clear with Little Bear that I couldn’t let him go to the club if he wasn’t going to listen to what he was told because that could be dangerous. The rules would be there to keep him and his friends safe. He gained stickers by doing what he was asked in school, at home and if he was with others like his grandparents. If he didn’t manage to do as he was asked, nothing happened. If he did manage to, a big fuss was made about his ability to make good decisions and he got a sticker.

By October half term the chart was full and I kept to my word and signed him up. I did speak with the football coach about Little Bear’s needs; that rules need to be clear and consistent for him and that he needs to know that the coach and I will talk and if things are not going well, the coach will tell me.

I knew I had to let him try but I was worried.

Last week, out of the blue, I received this message:

Just a quick one, I know you were unsure about signing Little Bear up for football but he has been amazing! I love coaching him, football or PE, just wanted to drop you a message to let you know. And then Big Bear is something else, great kid that doesn’t get the credit he deserves, he’s fantastic.

And my heart melted.

How lovely of the coach to take the time to send me that? I wonder if he really knows how much that means?

I couldn’t possibly have predicted, back in 2005, mid back garden flood, that my little dude would be able to overcome so many hurdles that he would be able to not just cope but flourish in a football club only 2 years later. He’s a phenomenon.

Maybe we did adopt the future David Beckham after all?!

 

And as for Big Bear, he is an extremely patient and lovely big brother and I hope that I at least give him the credit he deserves.