How to support a child with deafblindness in their early years 

The first years of a child’s life can be a steep learning curve for parents. If your child has deafblindness, multi-sensory impairments (MSI) and/ or  complex disabilities , that curve can be even steeper. 

Here you’ll find answers to some of the most common questions – asked by parents and carers of young children with complex disabilities.  

On this page we look at the following questions:  

• Will I be able to communicate with my child if they have a disability? 

• How can I help my child make sense of the world if they have a disability? 

• How can I play with my child if they have a disability? 

• How can I help my child with sleeping if they have a disability? 

• How can I help my child with eating if they have a disability? 

• How can I help my child with washing, dressing and going to the toilet if they have a disability?

• How can I get the right  support for my child’s education if they have a disability?  

• What happens if my child’s disability isn’t diagnosis?  

As a parent of a child who has deafblindness, multi-sensory impairments and/ or  complex disabilities,, you may feel overwhelmed by the challenges this experience brings. 

During these times, it is important to know that you are not alone and that there are resources and support available to help you navigate this journey. Find out what local support is available to you through your community, local health professionals and organisations.  

Talking to other parents who understand and empathise with your experience can be a source of information and help reduce feelings of isolation and guilt. 

Find support and connect with other parents going through the same experience. Together, you will find ways to cope and support your children’s development and well-being. 

Will I be able to communicate with my child if they have a disability?   

The answer is a resounding ‘yes’, you will be able to communicate with your child!  

There are so many different ways to communicate and connect, including speech, sign language, touch, movement, gesture, sound, pictures, objects and manual or electronic aids.  

Use whatever works for your child, which could be a combination of any or all of the above techniques.  

You may need to seek out specialist support to learn different ways of communicating with your child.  

How can I help my child make sense of the world if they have a disability?  

Children with  deafblindness, multi-sensory impairments and/ or  complex disabilities, get little information from the world around them. The information they do receive may be inconsistent and distorted.  

It means events need to happen very consistently to help children to make sense of what they’re experiencing and to understand what will happen next.  

Here are some of the ways you can help to make the world more understandable for your child: 

Learn how to tell your child what’s happening, and what’s going to happen 

Make sure you do it in a way they can understand. 

• Cues can be used to mark the start and/or end of an event and to prepare your child for an activity.  

• For example, the same song sung every time you’re going out or a washcloth before bath time.  

• Objects used to refer to a person or activity are called objects of reference. 

Develop set routines 

• For example, dressing your child, getting ready for dinner or saying goodbye in the same way every time you do it.  

• Be as consistent as possible, using the same place, the same person and the same object to signal that something familiar is happening or about to happen.  

• With family life, this can be a challenge, of course, or even impossible at times! But consistency will help your child recognise and understand what is happening.  

Think about the physical environment 

• Keeping the layout of a room or space the same, with certain items always in the same place can help a lot.   

• It can help your child to learn and give them confidence to explore safely if they can move around.  

• The needs of the rest of the family in using the space may not make this possible all the time, of course. Siblings will have their own activities and games to play!  

Encourage your child to use the senses they have to take part in an activity 

• Encourage your child to use their sense of touch, smell and taste as well as the sight and hearing they have.  

• For example, you can hold their hands over yours while you make a drink, eat or put the toothpaste on the toothbrush.  

• It is not unusual for young children to explore objects using their feet too. 

Take time 

• Children with  deafblindness, multi-sensory impairments  and/ or  complex disabilities, need to take in as much information as possible in ways that work for them. This takes time and patience.  

• Once you’ve established a routine, it’s important for your child to recognise each different part of the activity.  

• It can be difficult to keep this up. But if you can allow extra time for everyday activities, it will make a difference.  

How can I play with my child?  

Rest assured, there are countless ways you can play with your child, no matter how complex their disabilities.  

These are the important things to remember to help your child connect, communicate, learn and have fun through play.: 

• To let your child lead – they will show you what they enjoy and how they want to play. 

• Give your child choice – this can be as simple as which an option for a red or blue colour crayon or a big or small ball. 

• Make it sensory – play helps to introduce new sensory stimulus in an accessible and entertaining way. Avoid giving them instructions– children enjoy the exploring that comes with sensory play. 

• Adapt toys and make new one – mainstream toys aren’t always accessible or cheap but you can make your own or adapt the ones you have to suit the needs of your child.  

How can I help my child with sleeping if they have a disability?  

Here are some of the ways that can help your child establish regular patterns of sleeping and wakefulness:  

Daily routine  

• Establish a regular routine for each day that your child can understand and anticipate.  

• Make sure your child has opportunities during the day for both exercise and rest.  

End of the day routine  

• Introduce a consistent winding-down sequence of events that is enjoyable for you both.  

• Create a safe, separate space for your child to relax and get ready to sleep 

• If you’re relaxed and enjoying your child, they will sense this and pick up these feelings.  

Remember: 

• It takes a while for all children at a very young age to establish regular patterns of sleep and wakefulness.  

• For children with deafblindness, multi-sensory impairments and/ or complex disabilities it can take longer. There may be a number of reasons for this. For example: 

• Your child’s understanding of day and night may take longer to develop, particularly if they have a visual impairment.  

• Your child may need to rest or sleep during the day beyond the first few years, which may disrupt their sleeping at night.  

• Consistency, patience and perseverance over time help to make a difference.  

• Look out for the small signs and positive steps along the way and be encouraged.  

How can I help my child with eating if they have a disability?  

Why your child might find eating difficult  

If your child has deafblindness, multi-sensory impairments and/ or complex disabilities and has eating difficulties, it can help to understand why.  

It may be due to health issues such as:  

• Physical problems with your child’s swallowing mechanism or the digestive system. 

• If your child has a particular syndrome or condition, check with a healthcare professional involved in your child’s care whether a physical problem that may affect eating is part of it.  

• Medical interventions, which may have been painful, uncomfortable or frightening. Your child may generalise these events and associate them with eating.  

• Tube feeding through gastronomy or naso-gastric tubes. Prolonged periods of tube feeding may mean that your child needs to learn or relearn how to suck and feed.  

• Physical problems with your child’s ability to sit up by themselves, reach their mouth or control their hand movements, due to additional physical disabilities.  

It may be a lack of opportunity to play with food and practise eating like other young children do can also affect your child’s response to eating. Without this, eating and mealtimes may be confusing or even frightening.  

Ways you can help your child with eating  

Here are some of the ways you can help your child with eating. 

Before you start  

• Have a go at identifying the cause of any difficulties. This may help in deciding what to do. It can help you to respond calmly if you understand why your child is behaving in certain way.  

• Remember that eating problems usually develop very gradually and may take some time to remedy.  

• If you are teaching them to eat by themselves, think of what ‘tool’ is going to help them to eat more easily. This can be eating with their hands, or using adapted cutlery such as an adapted spoon with a bigger handle that allows better grasp and movement.  

Be comfortable  

• Make sure you and your child are both positioned comfortably for eating.  

• Cue your child what is about to happen  

• Use a consistent cue to signal that mealtime is about to start. For example, a plate/bowl or a spoon.  

Give your child time to smell and feel the food  

• If you are feeding your child yourself, use a consistent signal to show that the next mouthful is coming. For example, a touch of the hand.  

Keep it slow  

• Slow down your own movements and responses to give your child time to understand the information they’re receiving.  

Encourage your child to touch food  

• Allow and encourage your child to touch food – they may then take their hands to their mouth.  

• Playing with soft, sweet foods such as yoghurt/curd or mashed fruit such as banana or papaya sometimes encourages children to smell, touch and taste food in a way that reduces pressure on mealtimes.  

Give your child choice and positive feedback  

• Try putting small bits of mashed/ soft food on your child’s bottom lip (not in the mouth), so that they are left free to decide whether to accept or reject it.  

• Praise your child when they respond positively. All children love the encouragement and attention it gives them. Behaviour that gets the most attention tends to be repeated the most.  

• Accept it when your child doesn’t want to eat or do something. Hard though it can be, try to stay relaxed. This helps your child to feel they are in control of what is happening and makes it less likely that a negative pattern of behaviour will develop.  

How can I help my child with washing, dressing and going to the toilet if they have a disability?  

Here are some ways that may help your child learn to wash, dress and go to the toilet themselves:  

• Establish a regular routine for each day that your child can understand and anticipate. 

• Cue your child about what’s going to happen. 

• For example, you can indicate the stages of dressing through touch while at the same time saying or signing ‘This is going over your head’.  

• Try to allow enough time for your child to respond at each stage.  

• As for all children, begin toilet training when your child is dry for longer periods and seems aware of what is happening. 

• Some children with deafblindness, multi-sensory impairments and/ or complex disabilities, feel insecure in space and do not like squatting, or sitting on a potty or toilet without support. Make sure your child’s feet are supported on the floor or on a step, and that they have something or someone to hold on to.   An accessible commode style toilet to sit on with hand-rails to use can be especially helpful for children who have additional physical disabilities.  

• If your child does not seem aware of what is happening you can try to keep a record of when they are normally going to the toilet, so that you can plan your toileting routine in line with those times.   

Remember:  

• Toilet training is likely to take longer for children with deafblindness, multi-sensory impairments  and/ or  complex disabilities. For some children, bowel and bladder control are hard to achieve because of their disabilities.  

• Bathrooms/ washrooms smell different from other rooms, and often have a different sound to them. Your child may find this interesting and experiment with sounds, or they may find it frightening. If they seem anxious in the bathroom/washroom, try using things like scented soap or singing to make it feel a more friendly, safe place to be.   

• Children who are anxious about having a bath may prefer a smaller bath (or bucket) so they can feel the edges – or they may prefer to share a bath with you. If they are washing/ being washed using a stand-up tap or shower, your child may feel more comfortable sitting down somewhere to wash more safely.   

• Take time. 

• Children with complex disabilities need to take in as much information as possible in ways that work for them. This takes time and patience.  

• Once you’ve established a routine, it’s important for your child to recognise each different part of the activity.  

• It can be difficult to keep this up. But if you can allow extra time for daily personal care activities, it will make a difference.  

• Praise your child when they respond positively. If your child doesn’t want to do something, show them that you understand how they are feeling, even if you have to insist that the personal care activity is done.  

How can I get the right educational support for child with a disability?  

Education provision is different for children with disabilities in different countries and locations, but the important thing to remember is that your child has a right to education just like every other child in the community (refer to United Nations Convention of the Rights of People with Disabilities (CRPD) Article 24). Seek support from local organisations  who can signpost you to local specialist services too. 

What happens if my child doesn’t have a diagnosis? 

It’s very common for a child with deafblindness, multi-sensory impairment, and/or complex disabilities not to have a diagnosis. 

If your child is struggling with different aspects of their life, for example, they aren’t developing typically, it’s important to seek support from specialists in identifying need. 

If this is your situation, contact your local community health professional who can support you to try to get a diagnosis.  

This information has been provided by Sense, a leading disability charity based in the UK supporting people with complex disabilities, including deafblindness. 

This has been edited for an international audience (2024).