How to support your disabled child in their early years

The first years of a child’s life can be a steep learning curve for parents. If your child has complex disabilities, such as hearing loss and/or vision impairments, that curve can be even steeper.

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

On this page: 

• Will I be able to communicate with my disabled child?
• How can I help my disabled child make sense of the world?
• How can I play with my disabled child?
• How can I help my disabled child with sleeping?
• How can I help my disabled child with eating?
• How can I approach toilet training with my disabled child?
• How can I get the right support for my disabled child’s education? 
• What happens if my disabled child doesn’t have a diagnosis?
• How can I get support for my disabled child and my family?

There’s plenty more useful information on our website, so you can tap into our knowledge and expertise whenever you feel you need further support. 

You can also get in touch with us to discuss any aspect of your child’s care and development. We’re here to support, reassure and inspire you every step of the way. 

Will I be able to communicate with my disabled child?  

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. 

We believe in using whatever works for your child, which could be a combination of any or all of the above techniques. 

Sense offers support for families to help children with complex disabilities develop communication skills.  

Find out more about developing communication skills.

How can I help my disabled child make sense of the world? 

Children with complex disabilities, such as multi-sensory impairments (MSI), 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 in the car, a flannel before bath time or an armband before swimming. 
• 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 disabled child recognise and understand what is happening. 

Think about the physical environment

• Keeping the layout of a room or space the same, with furniture 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, mix paint or put the toothpaste on the toothbrush. 
• It is not unusual for young children to explore objects using their feet, so shoes and socks may come off. 

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 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. 

Our toolkit for parents of children with complex disabilities shows you the best ways you can engage your child in play.

It brings together our unrivalled depth of knowledge around using all the senses to help your child connect, communicate, learn and have fun through play. 

How can I help my disabled child with sleeping? 

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. 
• For example, dimmed lighting, a scented bath, being wrapped in a warm soft towel, a sequence of gentle massage and rocking songs. 
• If you’re relaxed and enjoying your child, they will sense this and pick up these feelings. 
• A warm drink and biscuit or other light snack before bed may prevent hunger during the night and help to prolong periods of sleep. 

Prepare the bedroom 

• Warm the bed and dim the lighting to limit distractions before taking your child into the bedroom. This can help your child snuggle and settle down. 

Keeping an eye on your child 

• Use a monitor so you can check your child is settling without needing to open the door and disturb them. 

Remember:

• It takes a while for all children at a very young age to establish regular patterns of sleep and wakefulness. 
• For children with 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 disabled child with eating? 

Why your child might find eating difficult 

If your child has 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 your GP or other 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. 

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. 

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 bib or a spoon. 

Give your child time to smell and feel the food 

• 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 or mashed banana 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 liquidised 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 disabled child with washing, dressing and going to the toilet? 

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 complex disabilities, such as multi-sensory impairment, feel insecure in space and do not like sitting on a potty or toilet. 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. 

• Bathrooms smell different from other rooms, and often echo. Your child may find this interesting and experiment with sounds, or they may find it frightening. If they seem anxious in the bathroom, try using things like scented soap and relaxing music to make it feel a more friendly, safe place to be.  
• Children who are anxious about having a bath may prefer a baby bath so they can feel the edges – or they may prefer to share a bath with you. 
• 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 support for my disabled child’s education? 

Under the Children and Families Act 2014, children and young people with special educational needs and disabilities (SEND) are entitled to extra support with learning at nursery, school or college.

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

It’s very common for a child with complex disabilities not to have a diagnosis.

If your child has identified needs, for example, they aren’t developing typically, it’s important to seek support from specialists in identifying need.

If this is your situation, then we can support you to try to get diagnosis through some observational assessments.

Health professionals should do the same thing in order to help you too.

Contact and Syndromes Without A Name (SWAN) UK also provide advice and support.

How can I get the support we need as a family? 

Support from other organisations 

Contact is a charity for families with disabled children. They provide advice and information for families raising a child with additional needs including benefits, rights and education. They have a listening ear service, workshops and training and run special projects and programmes across the UK.  

Council for Disabled Children provides advice, guides and resources for disabled children and their families and professionals. You can access their online library of resources which covers Educational Health and Care Plans (EHCPs) and your legal rights around education and support.

Special Educational Needs and Disabilities Information Advice and Support Services (SENDIASS) commissioned by Council for Disabled Children. SENDIASS provides information, advice and support available for parents of disabled children in your local area.

Independent Provider of Special Education Advice (IPSEA) provide free legal information and advice for children with special educational needs and disabilities in England. You can access their guides online or call their advice line to get help.

The Local Offer is the name for the support your local authority should provide for disabled children and young people and their families. Find your local authority.

The Sleep Charity has information and advice for disabled children with sleep issues.   

Scope provides an emotional support programme for families called Navigate. Navigate is a national mentoring service, that provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional needs.

Rainbow Trust is a children’s charity that provides emotional and practical support to families who have a child with a life threatening or terminal illness.

Together for Short Lives support children whose life is expected to be short, including those undergoing palliative care. They offer confidential emotional support and information on a range of issues through their website and helpline so families can spend less time searching for help and have more time together.