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 19th October) landing at the same time – two events I am always keen to talk about.

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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 18th. 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…

DLD Awareness Day 2018

Communication Difficulties: Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Communication Difficulties: Update