School leaver/ adult
As your teenager who has Down syndrome moves into adult life, there will be many different challenges to face. Speech and language is often still a concern, but growing up, going into further education, employment or some type of day-service provision will all bring their own challenges. Managing more independently and communicating with people in the wider community need to be considered.
Some people with Down syndrome may find the traditional HSE day-service provision rather restrictive and might want to explore options such as continuing education, training or employment.
Many DSI branches run Ability Programmes, which can be part of a continuing education programme. Our research is showing that continuing to focus on education and literacy into adulthood can lead to improvements in spoken language.
Environments, where there are few opportunities for communication, choices and continuing education, are unlikely to promote language development in adults, so it’s important to bear this in mind when looking at options.
At all stages of life, people who have Down syndrome are likely to understand more than they are able to communicate, which can be frustrating for everyone!
It’s important to keep developing language though, and as life becomes more complicated, new vocabulary will need to be specifically taught. As vocabulary expands, new words need to be integrated into existing language. Discussion, visual materials, and mind-mapping will help.
Tenses are still likely to be difficult to understand and to express. Use written language to support understanding. Use pictures of your family at various ages and talk about them using the past tense. Find pictures of places you will be going in the future and talk about them. Make books on planning what is going to happen as well as what has already happened. Highlight the difference between the key words. It may be difficult for your young adult to hear the difference between walk and walked, but they will be able to see the difference.
There is no evidence of a plateau in learning language, so it’s definitely worth persisting. Remember, it doesn’t matter how quickly or slowly you learn, as long as you keep going!
It’s very important that your young adult has something to communicate. Give choices (and respect the answer!). Don’t jump in too soon if your young adult is struggling to communicate something; give them a chance to try to get the message across.
Make sure that you’re not unintentionally restricting communication opportunities. It may be easier to assume that your adult child wants the same breakfast they had yesterday (and it’s certainly quicker getting out in the morning if things are kept the same!) but it doesn’t promote communication or developing the confidence to make healthy choices.
Narrative and sequencing of ideas is important to practice. Language is a tool for expressing thoughts and ideas, and these usually need to be in some kind of order. Focus on topics of interest or practical use. Encourage your young adult to take photos of things like meal preparation or travel. These can be printed and used as a visual support to help to remember and talk about what happened. They can also be made into a set of books of recipes or journeys which can be used to prepare the next time.
There’s no evidence of a plateau in learning language, so it’s definitely worth persisting!
Speech difficulties can persist into adulthood, and restrict social, educational and employment opportunities. Life can be hard when you are misunderstood, so it’s definitely worth persisting to get clearer speech. The most important aspect is whether the message can be understood. Speech doesn’t have to be perfect, but it needs to be functional.
Rehearsal of speech ahead of time can help. It helps to plan what you are going to say, whether it’s about making a presentation to a group or ordering food in a restaurant. Role-playing situations, writing down what you need to say, even recording your best production and listening to it can all be helpful strategies.
People who have Down syndrome may learn some aspects of language better through reading than listening. Professor Sue Buckley, one of the leading researchers in this area, often says: ‘Teach the child to read to speak’. Teaching reading is one of the best ways we know of developing spoken language abilities in school-age children who have Down syndrome, and there is evidence that focusing on literacy helps spoken language development even in older teenagers and adults.
Literacy will continue to develop into adulthood, though at a slower pace. It is important that reading materials are age appropriate, and that we recognise and support all the ways of developing and practicing literacy. For example, sending a text message, checking in with a friend on Facebook, looking up cinema times on Google, checking sports news to see if their team won… these are all valid ways of practicing literacy skills!
There are lots of things to remember when navigating your way around new environments. This may seem daunting, but with some initial support, many young adults with Down syndrome can successfully find their way around and learn where they need to go. Many can successfully navigate public transport, and a few even learn to drive!
Most people who have Down syndrome will have relatively good visual memory, (this helps with navigating familiar environments) but verbal memory and working memory can be poor. Remembering verbal information and learning from listening can be especially difficult.
Working memory is how we hold information in our minds for a short time in order to do something. If you walk into a room but forget why, it’s your working memory which is at fault! Impairment in working memory means that people with Down syndrome learn and remember skills and information in a different way to other people, and this needs to be taken into account.
Poor verbal memory is one of the things which can impact speech, and can also make reading unfamiliar words using phonics difficult. Pre-teaching new vocabulary ahead of time, including teaching the written word, is essential. This could be the name of the station or Luas stop before the one you need to get off as well as the one you need, so you have time to get organised, for example.
As memory difficulties can be persistent, it’s important to learn coping strategies. Remembering things in groups or categories is easier than remembering individual items. Writing a list is even better.
Memory does improve with practice and familiarity. It’s easier to remember words that we use every day. It’s also easier to remember things we have seen and experienced rather than things we have just heard about. This means that repetition and learning through seeing and doing will be very important.
Your adult with Down syndrome won’t remember things they didn’t see or hear properly in the first place, so be alert to hearing and vision issues, and seek advice if you are concerned.
It is not unusual for people who have Down syndrome to experience age-related deterioration of hearing much earlier than other people, sometimes as early as late teens.
Be alert to signs of hearing loss and make sure that hearing is checked regularly.
Pragmatics is about how we use our language every day to communicate. We use language to connect with other people, to get something we need, to express like or dislike, to let people know we want something (or don’t!). We use language to get information, to draw attention to something, or to think out loud.
As an adult, it is unlikely that your son or daughter is using Lámh as their only means of communication, as the restricted vocabulary may not meet their needs. Sign or gesture may still be used to support understanding though, and it’s important that this method of communicating be valued. If your young adult can’t make themselves understood by talking, then additional methods of communication should be explored. This could be as simple as learning to write things down if people don’t understand, or it could be some form of assistive technology. Don’t be afraid if a communication aid is suggested. It’s important to be able to successfully communicate, using whatever supports are necessary. Successful communication is rewarding, and is likely to encourage further speech development rather than inhibit it.
Social communication is very important. Social awareness is usually a relative strength for people who have Down syndrome, but social language and communication skills may still need support. Try to encourage age-appropriate social behaviour at all times.
Work on problem solving and coping strategies, so that your young adult knows how to get help if he or she needs it, and knows when he or she needs to speak up.
Mobile phone use is part of life now. This has many advantages, such as being able to call for help, or let someone know where you are. There are built-in tools, like timers, calculators and reminders that can really help promote independence. It would be naive not to recognise that there are some disadvantages though, and there will need to be some discussion around using the phone and computer safely.
Total communication is about using and accepting all methods of communicating, not just speech. We can communicate using body language, facial expression, sign, gesture, sounds, words, pictures and objects.
A total communication approach encourages you to value all the ways your young adult can get a message across. Sometimes parents think that signing or using communication aids may reduce the need to speak. Actually, the reverse is true. People who can successfully get their message understood are more likely to keep communicating.
It’s vital that you focus on the message that’s being communicated, and value all attempts, whether these are spoken words, signs, gestures or a communication aid.
Frequently Asked Questions
How can I access SLT?
Contact your local HSE disability team. You don’t need a referral from your GP, you can self-refer. Unfortunately, many teams have long waiting lists, but it is very important to make sure that you are on the list anyway.
Members in some branches of DSI work together and fundraise so that subsidised therapy can be offered to families. Sometimes by employing or contracting therapists directly, or alternatively by fundraising to help families with the costs of private therapy. Contact your local branch to find out what’s happening in your area. Or contact Nicola Hart, Head of Member Services for advice at firstname.lastname@example.org and information if you’d like to get something started.
What does my child’s school need to know about speech and language?
It is really important that your child’s teacher understands that students with Down syndrome often have speech and language difficulties over and above what would be expected for their general ability. This can lead to students being underestimated, and becoming bored or frustrated.