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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Speak Up For Communication

With absolutely no mention of decorating downstairs toilets this week, I am back talking about the serious matter of children’s speech, language and communication needs – SLCN.

Last year, I wrote this post – Ensuring Children’s Speech and Language Needs Are Met: A Call to Action– about The Bercow10 report – a damning reflection of the state of speech and language therapy services in the UK and the enormity of unmet need. RCSLT and ICAN last week began a new campaign highlighting the changes that have been successfully brought about in the year since Bercow10 and asked for renewed efforts to speak up for SLCN.

Of the 47 recommendations made in last year’s report, 17 have already been fully actioned, which is a promising start.

You can see some of the key successes here:

I mentioned the petition begun by @GillianRudd at the end of last year’s blog post. Following an incredible effort, this was successful, gaining 11,622 signatures and leading to a debate in Parliament. The government have stated they are committed to meeting the needs of children with SLCN, and Teresa May herself has committed to change during Prime minister’s question time.

However, there is widespread agreement within the speech and language therapy profession that this is not enough. Budget cuts have decimated speech and language services up and down the country. Yesterday, there was an article in the Daily Mirror about children languishing on waiting lists for as long as a year before getting any sort of meaningful help (see Mirror Article). The NHS department I used to call my professional home no longer exists – its contract having been lost to a private provider – and those children I work with in independent practice talk of long waits, minimal input and quick discharge in their NHS services. I never thought I would have to end up working privately to be able to give children the quality therapy they deserve and part of me is still saddened by it, not least because private services are out of reach for so many vulnerable children who need them.

Pressure on NHS speech and language therapy departments has been growing over a number of years, with an increase in need and a decrease in funding. Clinicians are under pressure to move children through services as quickly as possible and to be inventive with the budgets they do have. The department I worked for, put a heavy emphasis on others, such as speech and language therapy assistants and teaching assistants, carrying out therapy with children. This was part of being ‘lean’ and making savings but ultimately I think it has devalued the work and knowledge of speech and language therapists and contributed to the demise of services. We also worked to an ‘episodes of care’ model, in which children were seen for a block of therapy to target a specific aim and then discharged, with the plan for them to come back again when they needed more. Although this was effective for some children – the ones whose parents or school would make sure they did come back – I’m sure it put vulnerable children with poorer support networks at increased risk. Although the service was designed for children to come in and out of, I think it gave the message to some people that nothing else could be offered and that children’s needs had resolved, where they hadn’t, and were unlikely to for their lifetime. In trying to be frugal, I suspect some services have inadvertently misrepresented the severity and long-term nature of some SLCNs as well as lessening children’s chances of getting the additional support they needed at school (funding is difficult to justify if a child isn’t actually under any external services).

As it stands, Little Bear has also been discharged from speech and language therapy. He too could be re-referred but that would require energy I’m not sure I have. I would need to prove his needs were severe enough to get through referral criteria and no doubt start back at the beginning of the initial assessment to waiting list process again, which took a year last time. He clearly does have ongoing needs – he has Developmental Language Disorder – but proving the daily impact on him would be difficult now his needs are more subtle. Like any parent of a child with SEND, I am already pretty stretched with managing behaviour, seeking funding, trying to get school to understand his needs etc. etc. I’m not sure that I should have to jump through hoop after hoop to get him the help he needs. Yet I would have to. And so too do parents of children with SLCN in all corners of our country.

For me, it has been far easier to create a speech and language therapy programme for Little Bear myself and to train his TA to carry it out myself. Clearly this is a perk that other parents cannot rely on.

The majority of clinicians want what’s best for children and many are deeply frustrated by the limits of the services in which they work. In an unprecedented move, RCSLT and ICAN wrote an open letter to government last week, asking for SLCN to be given the attention it deserves. It was countersigned by 60 organisations, ranging from Autism charities to fostering and adoption charities, who share a deep concern about the future of children with communication difficulties. You can find it here: Open Letter

Five key areas requiring change have been identified as priorities for action and are the five areas the open letter asked the government to act upon. They are:

Joint commissioning of Services – as SLCN impacts upon children’s emotional wellbeing, education, future employability and likelihood of involvement with the criminal justice system, a joined up approach to meeting need would be ideal. It is hoped that this would also help to iron out the postcode lottery which currently exists in the provision of speech and language therapy services.

Long-term support for SLCN – although support has improved in the early years, support for the 10% of older children and teenagers who will have ongoing needs continues to be poor.

Professional Development – there is a pressing need for all teachers and those working in the field of childhood mental health to be aware of SLCN and the many ways it might present. Professionals need to be able to identify SLCN and be aware of clear pathways to support.

Incentivising schools – budget cuts are impacting on education settings too. In these times of reduced funding and fewer EHCPs, it is imperative that schools are supported from the top down to identify and meet SLCN. The anniversary report asks for provision for SLCN to be considered during Ofsted inspections.

Supporting vulnerable groups – as children who have been excluded from school, those in Care, those with mental health difficulties and those who are involved with youth justice are more likely to have SLCN and are more at risk of their needs going unidentified, improvements need to be made to the support available for these groups as a priority.

This is the main area where I have tried to make an impact – providing training workshops for adopters and prospective adopters to arm them with knowledge of communication development; how to identify red flags and what to do to best support SCLN at home. Myself and another speech and language therapist adopter have also written a social communication group specifically for children with trauma backgrounds which is currently being advertised. It is good to see that work is beginning to happen with children who have experienced, or still are experiencing the Care System in other areas, and training for speech and language therapists in this previously neglected area is becoming more common too.

There are pockets of hope but in short, our work is far from done. RCSLT and ICAN are asking for our ongoing activism. We need to continue speaking up for communication and for children with speech, language and communication needs. We cannot stand by and do nothing.

If you would like to help, here are some things you can do:

• Use the hashtags #SpeakUpForCommunication and #SpeakUpForSLCN on social media
• Make a Vox Pop clip to pledge your commitment to speaking up for SLCN and share on social media (advice here: Vox Pop Guidance ) . I’m still pondering how I can get involved with this anonymously…
• Visit the website here: www.bercow10yearson.com where you can download speech bubbles and get tips on other ways to join in
• Write to your MP, or tweet them. Are they speaking up for communication? They are our representatives in Parliament – we need them to know about SLCN and Bercow10. We need them to speak up most of all.
• Retweet and share this blog
• Tell anyone who will listen about SLCN

Perhaps if we all shout loud enough, real change will happen.

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…

School-Parent Partnership

I have written lots before about our challenges with school ( School Worries), the work we have both put into resolving them ( Alleviating School Worries ) and the importance of strong relationships ( New Teacher ). I thought we were now at a point of having a solid working partnership where we each know the parameters and expectations of each other. I thought we were cool.

Yesterday morning, I found out completely by accident that school have changed Little Bear’s support timetable. Apparently the change happened several weeks ago but was never communicated to us. Mrs. C (Little Bear’s TA) has been told to start later each day, finish earlier one lunch time and work one afternoon instead. My immediate question was ‘why?’ I assumed the decision had been made because Little Bear doesn’t cope so well in the afternoons when he is unsupported. I get why they made the decision. However, I have several problems with it.

Firstly, if we are in a partnership, I don’t expect one partner to make big decisions without consulting the other partner. I am not necessarily against the change but would certainly prefer to have been able to discuss it first.

Secondly, for me, if my child isn’t coping to the point of requiring a change to somebody’s working hours, I need to know. That isn’t a minor deal. If Little Bear isn’t coping, what is going wrong? What behaviour is he displaying that indicates he isn’t coping? Perhaps there could have been other reasons or solutions to the problem? When there is a problem, I really hope to be consulted because we know Little Bear better than anyone and we might have an insight they haven’t thought of. When these things just happen without consultation, I am immediately propelled back to a place of thinking school don’t value our opinion or expertise as parents.

Thirdly, when changes are just made on a whim, the full consequences are not necessarily considered. While it may be good that Little Bear now has support one afternoon a week, he no longer has his TA there to meet and greet him at drop off in the morning. I know school thought that adjusting his timetable by 15 minutes wouldn’t make any real difference but in practise it makes the difference of whether he wants to cross that threshold or not. I have struggled on several mornings to get him in, not helped by Mr Jones who has no compassion whatsoever for a child refusing to leave his parent. His attitude is “get in, sit down, stop messing about”. When Mrs C is there (I guess she is now early sometimes), Little Bear is visibly relieved. She is his safety beacon within school and unless Mr Jones tries a bit harder to take up the mantle, Little Bear kind of needs her there. I could have told them this, had they have asked me.

We have now mentioned that Little Bear is more reticent to enter school in the morning since the change. Mr Jones says he hasn’t noticed any differences within the classroom. Again this is frustrating because school isn’t a silo. Things happen outside of school. Children exist outside of the classroom door and though Mr Jones may not see anything different inside his room, he cannot be blind to things happening immediately outside.

I strongly believe that care of children is a holistic process. There has to be an overlap between parenting and schooling; a bit in the middle of the Venn diagram where we come together. At times like this I feel as though we are in two separate circles, with a gaping hole between us. Our circle is constantly trying to encroach on schools’. We have a very friendly circle and are keen to overlap. Sometimes I feel their circle is shoving us roughly away.

A final unwanted consequence of this change to timetable is that I rather suspect it has pissed Mrs C off. She had those working hours because they fitted with her own life and her own children and that’s important too. Pissing Mrs C off is the last thing we would want to do, when we harbour secret hopes of renewing funding and her staying on for a few more years.

I know school had no intention or awareness of causing all these issues. They thought they were quickly solving a problem. However, I find it very frustrating that this has happened again, after all we have already been through together and when I really believed we had a trusting partnership.

Grizzly and I have a bit of a set-up where I’m good cop, because I need to interact with school twice every day and he is bad cop because he sees them far less frequently. Yesterday, bad cop got on the case with e-mailing the Head. Messages went back and forth and I could tell they were a bit bewildered by us having the audacity to think we could meddle in school decisions. In the end, I couldn’t keep quiet. I’m finding more and more that directness and honesty are often the most helpful ways of sorting things out. I sent an email explaining the above. I explained why we believe in partnership and how, as parents of a child with additional needs, it is imperative we work as a team. I was clear that school are doing an amazing job and that we are happy with Little Bear’s progress. We are not against them; we want to work with them. I was also clear that we are valuable members of this team and need to be regarded as such.

I have received a lovely reply. I think they understand now. I hope so because it is tiring having this type of issue every few months. We aren’t asking for a lot. A regular half-termly meeting and updates on anything that changes in between would be ideal. We just want open lines of communication and to be considered relevant in Little Bear’s education.

It’s tricky because I know that school have upset us completely unwittingly. The way we would like to work is evidently not natural for them and requires a bit of extra thought on their part. I can’t help thinking it shouldn’t be quite so difficult. Partnerships with parents should be core business; it is only when we truly work together that the best outcomes for children are achieved.

 

 

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.

 

 

 

Ensuring Children’s Speech and Language Needs Are Met: A Call to Action

As most of you know I am a speech and language therapist and my son, Little Bear, has Developmental Language Disorder   (DLD) so it is no surprise that meeting children’s communication needs is kind of a big deal for me. A recent report has come out reviewing speech and language therapy services for children and the findings are a little damning. It is called Bercow10 as it is written by John Bercow (of MP and having-a-bit-of- a-naughty-wife fame) in partnership with ICAN and the RCSLT and is a follow up to the original Bercow report which was written 10 years ago. It is a very important document and I want to share some salient points with you. As many of my readers are involved with adoption in some way, I am going to focus in particular on the bits of the report that are relevant for looked after children, children with mental health needs and children who become involved with youth offending. However, this is something that EVERYBODY needs to know about so please don’t look away, even if you don’t have any obvious connections to the content.

The report begins with an important message: “The most fundamental life skill for children is the ability to communicate” but it goes on to say that “as a nation, we have yet to grasp the significance of this”. This certainly seems to be the case as there are more than 1.4 million children in the UK with speech, language or communication needs (SLCN) yet it is not something we really hear talked about and most people have never heard of DLD despite it being one of the most common disorders of childhood. We hear a lot about the ‘obesity epidemic’ as it has a physical impact on children and a financial impact on the country. Bercow says that SLCN has a developmental impact on children as well as a social and economic impact and should similarly be considered an issue of public health. Being as SLCN impacts upon a child’s education, social, emotional and mental health and their future life chances it is a much bigger issue than it is given credence for.

A good starting point is to raise awareness of SLCN and what that means and what it looks like. If you want to know more about how Little Bear has been impacted by his language difficulties, see these previous blog posts: Living with Speech and Language Difficulties, Communication Difficulties: Update

Children from disadvantaged backgrounds, whether that is due to social disadvantage or maltreatment, are disproportionately affected by SLCN: in some areas as many as 50% of children have language disorder and Looked After Children have poorer language on school entry compared to those who are not Looked After. Children considered high-risk for harm, such as those on a Child Protection Order face a higher risk of SLCN as do children who live with domestic violence. Across the care system as a whole, 63% of children have SLCN, compared to 10% in the non-care experienced population. This makes our most vulnerable children even more vulnerable to poor life outcomes. Children with SLCN in early years are twice as likely to develop social, emotional and behavioural difficulties and are at greater risk of depression or anxiety. Children with poor vocabularies are twice as likely to be unemployed as adults compared to those with age-appropriate language skills.

The statistics are pretty scary. What is also very worrying and makes my heart break a little is that many children’s difficulties are missed or misdiagnosed. Studies have shown that 81% of children with social, emotional or behavioural difficulties, including those with conduct disorder or ADHD have significant undiagnosed SLCN. If we extrapolate that a little, the picture seems even worse. These children, who cannot learn in school (because the curriculum is not accessible to them and teaching is not differentiated for them), often go on to engage is risky behaviours – drug-taking, crime etc. and unfortunately many will go on to find themselves in the youth justice system. Another study shows that 60% of children in the youth justice service have low language skills, often lower than an average 11 year old. Imagine having to be interviewed and appear in court when you cannot access classroom language let alone legal jargon. Many of these young people are then expected to engage with various programmes to aid with their rehabilitation. Statistics suggest that 40% of young people cannot access the content of these ‘verbally mediated interventions’ due to their language difficulties.

If children do not get their needs identified at any early stage and do not receive the therapy they require, the consequences can be dire. This is what Bercow means when he talks about social and economic impact. I think this particularly upsets me because had life been a little different for Little Bear, he could all too easily have fallen victim to this pattern. His behaviour did come before him and had we not been able to see beyond that and not recognised his DLD (and developmental trauma), things could have been very different. Before Little Bear was adopted at the age of 3 and a half, although there was a vague indication in his paperwork that he might have some language delay, he had not been formally assessed by a speech and language therapist. I was shocked at the severity of his communication needs the first time I met him and his language was later assessed as being more than 2 years delayed. I’m not quite sure what other signs would have been needed for a referral to have been triggered but he was certainly at risk of falling through the cracks.

I think there are two key things here. Firstly, if a child is presenting with social, emotional or behavioural difficulties, they should have a speech and language assessment as a matter of course. Behaviour itself is a communication and people in general need to get much better at looking beyond it. The second thing is that other professionals need to become more knowledgeable about SLCN; teachers, health visitors, the police etc. all need to be aware of the ‘red flags’ and seek help to prevent life escalating away from vulnerable children.

The bleak picture I’m painting could possibly all come good if there were excellent speech and language therapy services available to meet need once children were referred. However Bercow is pretty damning about this too. There continues to be a post-code lottery when it comes to availability and quality of services: of all the 2500 respondents, only 15% felt services were available as necessary. More than 50% of people had waited longer than 6 months to receive the therapy they needed and 34% had waited more than a year. This is a statistic I can empathise with as we had to wait over 8 months for Little Bear to be seen for the first time and a year for therapy to begin (see A bit of a rant).

This isn’t good enough. I was lucky to have my professional knowledge to fall back on and could begin helping Little Bear from day one. However, most adopters or foster carers do not have that level of knowledge and couldn’t be expected to. A year is too long to wait for a child who has already been neglected and needs immediate support. Due to Little Bear’s behaviour, our adoption began at crisis point. Thankfully we were able to identify there was a communication element to his needs, as well as developmental trauma, and could begin to tackle it. As most adopters do not happen also to be speech therapists, they would be unlikely to be pre-armed with the knowledge and strategies required. The impact of not receiving support in a timely fashion could be catastrophic.

Our story does provide some good news though, thankfully. The thing is that when quality speech and language therapy is provided, it is extremely effective (see Speech Therapy Works). Despite starting pre-school at the level of a 16 month old across all areas of development, with communication being one of the most difficult areas for Little Bear, by the age of 6 his language levels had improved to within the expected range for his age. Admittedly he received a high level of input, both at home, in clinic and at school but that input was effective. Our story shows that as bleak as this situation seems to be, it doesn’t need to be hopeless. If change can be brought about, services can be improved and awareness can be raised, we can literally transform lives.

Bercow 10 doesn’t just highlight problems, it makes practical recommendations for change under the following headings: communication is crucial; a strategy for system change; an accessible and equitable service for all families; support that makes an impact; early identification and intervention are essential. You can read the full recommendations document here: Bercow10 recommendations

And if you are feeling very keen, you can read the whole report here (it’s really well written and a lot more accessible than I expected): Bercow10 whole report

What can you do to improve outcomes for children?

In order for change to happen, people need to know about the current situation. They need to know about Bercow 10 and its contents. @GillianRudd has begun a petition to bring discussion of Bercow10 to the government to ask them to ensure the implementation of the recommendations so that children’s communication needs can finally be met appropriately. 10,000 signatures are needed for the government to respond to the petition and 100,000 for it to be considered for debate in Parliament. You could help by signing the petition and asking one person you know to sign it too. Just follow this link: petition

Please share this post far and wide to get the message out there.

It is essential that schools, health visitors, psychologists, CAMHS services, doctors and the Police know about Bercow10. Could you share the link with your child’s school or other professional?

If you want to get even more involved than that, see the Calls to Action section of the website: Calls to Action 

Thank you very much in advance for signing petitions and sharing etc. Change has to happen.

 

 

*This post is based on my personal reading and interpretation of the Bercow10 report. If you want to know the sources of my statistics, please see the report.

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.

 

 

Credit Where Credit Is Due

When Little Bear’s Speech and Language Therapist and I met one another things could have gone either way. There was certainly a high risk of a strained relationship. As I had already made two formal complaints about the Service and she knew I was a Speech and Language Therapist too, she probably came to the first session with some pre-conceived ideas of how I might be. I imagine she thought I would be hard work, difficult to please and all-round a bit of a nightmare parent to have on your caseload.

I also came to that first session with some concerns. Our experience of the Service so far had been appalling (hence the complaints) and I was feeling embarrassed by association. I was worried that Little Bear wouldn’t get his needs recognised or met and that every session would be cringe-inducingly awkward.

Fast-forward seven months and I’m pleased to report that we have weathered the storm. Just as I felt it was important to speak-up when the treatment we received was poor, I also feel you should give credit where credit is due.

Things did go fairly well from the beginning because she (let’s call her Helen) listened to me and tried to anticipate what I needed from the sessions, as well as being lovely with Little Bear. We have now been working together (and I truly believe that is how we have done it) for some time and Little Bear has made a lot of progress. We have targeted three different vowel sounds in turn which he has learned to articulate and has successfully generalised into his everyday speech. Helen has also set language targets and provided materials for school to work on.

Helen has recently re-assessed Little Bear to decide on next steps. Her assessment showed that Little Bear has moved from the 5^th and 16^th percentile on two comprehension subtests to the 16^th and 63^rd respectively, both scores now within the expected range for his age. He has also acquired a 4^th vowel sound which we haven’t targeted in therapy. He has made incredible progress.

At the session before last Helen wondered aloud whether Little Bear might be ready to switch to the school part of their service now. As he has top-up funding he is eligible (in our area) for speech and language therapy visits to school. As he had made so much progress she wondered whether the time might be right.

I didn’t say much as I knew we still had further assessment to complete but when I left the session I had some nagging doubts. If he got seen in school, who would the therapist be? I’d have to get to know them from scratch and crucially so would Little Bear. How much involvement would I be able to have? Would the session take place without me being there? Although Little Bear has done really well with therapy, his speech continues to be peppered with errors and he is by no means ‘cured’ yet. I’d have to voice my thoughts next time.

However, when it came to the next time, I didn’t have to voice anything. Helen was one step ahead.

She had gone away and spoken with the school therapy lead and almost had a supervision session about Little Bear. I think it’s a sign of a good therapist when you can go away and reflect and ask other’s opinions. She is a very experienced therapist but knows that another perspective and some time to think can be really useful.

She happened to have some students with her during our session and took advantage of having someone to entertain Little Bear, allowing us the chance to talk. She suggested we had an honest discussion about how we both feel Little Bear is getting on and what should happen next. We went through each area of Little Bear’s communication and I told her how he’s doing with it, in real life, outside of clinic.

She told me that on reflection, she has some concerns about Little Bear moving to the other part of the service. She is worried about how he will cope, given his background, with getting to know another new person. She feels that both she and he, and she and I, have developed a good, effective therapeutic relationship. She is wondering about the benefits of trying to switch this relationship to somebody else. I wholeheartedly agreed with both of these things. I think it made it easier for me to be honest as she was so direct.

We agreed that although it is not ideal bringing Little Bear out of school to go to a clinic environment it is working well for him, he is used to it and it is manageable. We agreed we would continue in this way as it is better for Little Bear. It is not the usual protocol but Helen sees the need to be flexible to best meet his needs, as good therapy should.

As Little Bear is entitled to school input, Helen and her Manager have agreed to some flexibility about school visiting and Helen can do a classroom observation if I think that would be useful (she is usually clinic based only). I definitely think it would be useful to have another pair of eyes in the classroom. I have been desperate at points to go and observe myself but obviously as a parent it wouldn’t be appropriate. However, I value Helen’s opinion and it would be useful to know what is going on communication-wise in school, especially with Little Bear’s TA.

We then completed the prioritisation system particular to our local Trust. Helen allowed me to be a partner in this. We were mostly in agreement anyway but where we weren’t we went for the middle of our scores. I think it must be extremely difficult for her having another SaLT in all of her sessions and I find it hard knowing what involvement I should/shouldn’t have. I’m so grateful that she has acknowledged my background and we don’t have to pretend I’m not a SaLT. Ideal or not I am one and I can’t pretend that I don’t have knowledge that I do (although initially that was my intention).

I did acknowledge this with Helen and she said she is very mindful that Little Bear gets what everyone gets and they don’t just rely on him getting what he needs through me. She also said that if a parent had learning needs, they would adapt their approach accordingly. I happen to have a little more knowledge about communication than the average parent but this needn’t be a problem, they can adapt their approach for that too.

I know that not every therapist would have been able to take my profession quite as in their stride as Helen has. It is because she is confident and experienced that she knows it needn’t bother her. I have also been very careful not to comment unless invited and have acknowledged things like how difficult it is to transcribe vowels and that I would have found this challenging. Helen is the therapist and I am the parent and generally we stick to those roles. However, we do seem to have found a comfortable place in the middle where we discuss Little Bear’s needs on a level and plan jointly, as two co-professionals would. I suppose she has allowed me the role of professional parent, the specialist in my child, in a way that many parents, particularly adopters, are often denied.

We went on to co-write aims for the upcoming sessions of therapy.

Helen was clear that she will not be keeping Little Bear on the caseload forever. I know this and I don’t want her to but I do hope we are in agreement about when the time is right to stop. The prioritisation score we agreed on indicated that direct therapy is still needed so we are in agreement at the moment that the sessions should continue. We have two more vowels in our sights as well as some updated language targets.

I came away from the session extremely grateful at the way things have turned out. It shows that you can stand up for your child, make complaints and still go on to have a great relationship with a professional. As a parent you can get your views heard and you can get your child’s needs met if you persevere. I think Helen has been surprised that I’m not the nightmare I seemed on paper, I am just a parent who wants the best for their child and I am fully prepared to work together to achieve that. I will say what I think and I will point out bad practise but if things are going well, I will acknowledge that and praise it. We have a good working relationship and despite the odds I would even go so far as to say we that we really quite like one-another.

When we have finished therapy I will be writing to Helen’s manager to thank her for the service we have received and to recognise the great job Helen has done.

 

I have written a lot about Speech and Language Therapy and our experiences. You can read more here if you are interested: Developmental Language Disorder, Communication Difficulties: Update, SaLT, EP & an Assembly, Another try at SaLT, A bit of a rant, Living with Speech and Language Difficulties

 

 

Developmental Language Disorder

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

 

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

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 rant, Another 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.