To mark this year’s World Down’s Syndrome Awareness day, I’ve put together this post on the speech, language and communication needs of children with Down’s Syndrome and some ideas for ways we (grown ups – parents, loved ones, nursery & school staff…) can support them. There are lots of places you can head to for more information about what Down’s Syndrome is and all of the ins and outs and roundabouts, and I have included a bank of links at the end of this post that you can check out for more info. But I will write only about what I know best – which is communication.
*What I’m about to say next is the kind of stuff that goes without saying, but that I think I should always say – as with any group of humans, every child with Down’s is an individual. Each child’s personality and unique make up will mean that they never follow any curve or list or guideline to the letter. (I am pretty sure if you are a parent or teacher reading this, then you will know that already!) I view each child as a whole person in their context, and would never assume anything before I’ve gotten down on the floor, played with them and gotten to know them. So please take everything below as the broad sweeping generalisation it is. Follow any therapy plans you’ve already been given and don’t take anything here as a prescription. It’s not. It’s all general advice based on my professional knowledge, skills & experience, which I hope you can take, think about and perhaps grow from.
A Special Profile
There is a particular profile that children with Down’s show when it comes to their learning and their speech & language development. A number of factors play in to this – there are parts that are physical and there are parts that are cognitive (mental). Children with Down’s tend to present with:
- Difficulties & delays with speech sounds: there is a strong physical contributor here – due to differences in the shape and proportions of the skull, the tongue takes up more space in the mouth than usual (one of the reasons you may often see the tongue protruding from the mouth). This makes it much harder for children to produce clear speech sounds, and can mean speech remains less clear. Also partly related to the structure of the skull, most individuals experience hearing loss or difficulties, including recurrent ear infections/glue ear. This can mean that children with Down’s are often hearing sounds less clearly than is ideal, and this can make it more challenging for them to do what every child has to do – hear and learn to differentiate sounds and then work out how to reproduce them accurately as they learn to speak.
- Language delay: virtually all children with Down’s will present with some degree of language delay. These language issues relate to what a child is able to understand as well as the vocabulary and grammar they are able to use. They can be hand-in-hand with additional learning difficulties, but it is a tricky one in that language levels do not tend to match other developmental areas consistently. Which brings me on to the next point…
- An uneven development profile: different development and skill areas may be mismatched and there is no pattern to this. For example, a child might experience a delay of 1 year with their understanding, 2 years with their spoken language but only 6 months with their motor skills. Each area of a child’s development should be assessed and monitored continuously so that we can get to know that particular child’s areas of strength and difficulty and notice when things might be changing.
- Working memory: many children have impairments to their working memory – particularly to the area of memory that holds on to speech sounds while they are processed. What this means is that it is harder for children with Down’s to listen and process what they’ve just listened to (remember the words they’ve heard, remember the sounds that were in the words they heard, remember what order the sounds came in etc). Imagine how tricky it’s going to be to learn words, understand words and work out how to say words if you are struggling to remember sounds and put them in order…
- Attention & listening difficulties: in my experience this is a common by product of children trying to navigate a really demanding bunch of challenges. It is hard to pay attention when you’re not understanding. It is hard to have to battle to remember and process things most other people do without even thinking about it. It is hard when you’re giving your best efforts but you can’t get people to understand what you’re trying to tell them. Add to that the demands of a busy & noisy classroom or the background noise & distractions at home. It is exhausting to be doing all of these things and more, minute after minute after minute every day. And when children are tired or finding things too difficult, they will disengage, they will try to avoid tasks, they might “act up” and show some undesirable behaviours, it might be a tough job to keep them on task.
There is good news though – in the middle of some of these trickier areas, children with Down’s often show a particular pattern of strengths (and in my working experience these seem to have been very consistently true):
- Strong visual learning skills: visual memory is not impaired in the same way as other areas of working memory. Visual processing and coding (sorting out visual information) are a relative area strength.
- Wonderful, wonderful non-verbal communication: if you haven’t had your favourite children’s story retold to you by a child with Down’s, using single words or no words at all and just their super expressive faces, natural gestures, miming and acting skills….well! You probably have never experienced your fave story in all of it’s true glory! Non-verbal communication tends to be strong in children with Down’s. It is often a more accurate reflection of their cognitive abilities, much more so than the words they can say. And you can often see in their non-verbal responses just how much they can understand and do because they are expressing themselves in their most natural and comfortable ways.
- Social butterflies: generally, children have good understanding of social situations and relationships for their developmental level. They can often form friendships with their peers beautifully, regardless of any speech and language difficulties they may be having, and may regularly show you, given the chance, that they know how to work situations for their own benefit (or entertainment!).
- Much longer language learning windows: in children without Down’s vocabulary and grammar development have usually reached their peak by around 8 years old and not much learning happens after that point. Children with Down’s however can go on learning and improving their language skills well in to their teens and up to 20 years old. So yes things can sometimes be progressing more slowly, but there is also a lot more time for optimal learning. And this is a great thing.
So…How To Help?
There will be so, so many ways you can support the speech, language and communication development of your child with Down’s. Whether you are a parent, carer or member of staff. There’s no way I could list them all here or get in the strategies that would be best for your individual child. But here are my top 5 suggestions for how you can start to make a big difference to learning, language development, attention, behaviour and overall happiness:
- Get visual: I cannot stress this enough. Get visual everywhere! Make your environment visually stimulating and engaging. Put reminders up in places your child will see – e.g. a sequence of pictures on their desk to explain what they need to do in the session or on the bathroom wall reminding them of all the steps they need to go through every time they use the loo. Use visual timetables so your child understands what’s going to be happening in their morning or day, and can feel more secure because they know what to expect. Offer choices using physical objects (e.g. hold up 2 games or snacks that you want them to choose from and say the names for each as you show them) or photo/symbol cards. Label cupboards, boxes, folders etc with photos or symbols showing what is inside – this kind of thing can really promote independence. Use a colour coding system to support learning grammar – e.g. Colourful Semantics – and apply it to speaking activities, reading and writing. Use small symbol or picture cards to practice putting words together in to sentences – e.g. a symbol of a boy next to a symbol for eating next to a symbol for sandwich to practice saying the sentence ‘the boy is eating a sandwich’. If you’re doing maths practice sums with props – count teddies, add up baby ducks, take 3 blocks away from your 5. Learn and use Makaton signs – this is so effective that I should really have put it first. Signing while you speak will support your child to follow and understand what’s being said. Being able to sign will mean that even if they can’t get the sounds clear enough to be consistently understood, they have a reliable way to make their needs, desires and thoughts known. In my experience using signed speech tends to also enable children to put more words together in their speaking – it is a wonderful physical and visual prompt.
- Develop non-verbal skills: for any child experiencing speech and/or language difficulties, having strong non-verbal skills can be very helpful for navigating misunderstandings, getting themselves understood and to build confidence to take part by reducing the pressure to use spoken language (which may be daunting if it’s something they find particularly difficult). But also very importantly, there are likely to be occasions when spoken language breaks down entirely – if speaking is hard it is not going to be the first thing you’re going to try and do if you are sad, angry, excited, overwhelmed etc and caught up in the heat of the moment or the emotions. In these instances, it is often easier for example for a child to know they can put their hands up in a ‘stop’ sign to let you know they need a break or some space, and have that need respected, rather than have the stress of working out the language they could use and having it understood. Act out stories. Pretend to be your favourite characters or different animals, make noises. Sit together at the mirror and make faces. Make your own non-verbal communication stronger – exaggerate your facial expressions, use your hands and body in consistent natural gestures, do little spots of mime to support what you’re saying. Enjoy sound play – listen for sounds at home or around school or when out and about, and try to copy them; make animal/vehicle noises; sing favourite melodies and don’t worry about the words just try putting in your own sounds and have fun.
- Promote inclusion: inclusion for all children with any type of additional needs can be an ongoing balancing act. In school the classroom may not always be the best or easiest learning space for some children’s needs, and 1:1 or small group time in quieter spaces can be very beneficial. However social relationship, feeling a sense of belonging and having an identity that is part of a social group and the class as a whole, cannot be understated. It is so important that we see our children as children and make their needs for companions, fun and social interactions a big priority. How this looks will be different in every situation, but it is definitely worth evaluating (and reevaluating regularly) how well you are striking the balance for your child and whether all of their developmental needs are being stimulated and met.
- Work to every child’s strengths: please don’t spend all of your time practicing what your child finds hard. Take time to do the things they are great at, enjoy and want to do. In fact, this should take up the majority of your day every day. There will be plenty of opportunities within that for incidental learning, growth and new experiences. But doing what you find hard relentlessly is exhausting and demotivating, even as a grown up (like the time I tried to learn how to run 10k….but that’s another story…). Build your child’s confidence, esteem and motivation by making sure they are engaged and happy overall. If they stop being engaged and happy, take a few steps back, lay off of any hard tasks for a while, and maybe let them lead on what they’d like to do.
- Take breaks, give rewards, pace yourselves: when you are working on more challenging tasks or doing activities from your therapy plans etc, take regular breaks. Breaks will support attention and stopping before your child gets fatigued will improve behaviour. Try a movement break between seated, table-top activities – take a walk, play a physical game, go for a run around outside or if you have a physical therapy programme this could be a great way to incorporate activities from it a number of times throughout your day. Get a reward system (make it visual!) and use it consistently – let your child choose what they’d like as a reward (it doesn’t have to be big, it could be 5 minutes of iPad time or a few goes down the slide or blowing some bubbles) and make sure they can see how they are doing to achieve it (i.e. use a chart and keep it visible at all times). Make sure the reward is achievable – they shouldn’t have to do too much or wait to long for it. You may have a reward they can achieve at the end of every class, or as they get older at the end of the morning or afternoon. Try to gauge how patient your child can be for a reward, because waiting is hard (and no fun!), and you don’t want them to become demotivated because it feels too hard to achieve. Don’t try to get all of your goals done at once – pace yourselves. Pick 1 or 2 areas you’d like to work on for a few weeks, and when those are done pick some new ones or find ways to extend what you’ve been working on. Make as many things as possible in to games and play. (Most things can be learned through play, but that’s perhaps another blog post…)
Seek professional advice as you need it. Talk to your therapist(s) if you have questions or new ideas you’d like to incorporate – you have a voice when it comes to your child’s care.Enjoy the ride with your child. Life and learning are fun.
I hope this is helpful for someone.
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For further information on Down’s Syndrome:
NHS: Down’s Syndrome
Down’s Syndrome Association
World Down’s Syndrome Day
Down’s Syndrome Extra 21