Caring for a disabled child can make your daily parenting duties, such as feeding, toilet training and getting them to sleep, more challenging.
Read on for advice and information, or click on the links below to take you to a particular area of interest:
- Feeding and eating
- Using the toilet
- Moving around easily
- Challenging behaviour
- Communicating with your child
Feeding and eating
A disabled child may have problems with feeding and eating for many different reasons, such as:
- physical problems that cause difficulty swallowing, chewing, sucking or digesting certain foods
- limited mobility, which might make it difficult to sit up to eat or drink
- a learning disability, which could make it more difficult to learn appropriate behaviour at mealtimes
It might take longer for your child to be able to feed themselves, but developing the skills to do so can also help them in other ways, such as with speech and language development and co-ordination.
Your health visitor can advise you on many aspects of feeding and weaning your baby. As your child grows, you might be able to get a referral from your GP or health visitor for any further specialist help you might need.
- A speech and language therapist may be able to help with physical issues such as chewing and swallowing.
- An occupational therapist can advise you about aids that might help your child, such as special plates, bowls, cups, adapted cutlery or non-slip mats.
- A physiotherapist or occupational therapist can advise you on getting your child into the right physical position to eat.
- A dietitian can help you if you're concerned that your child isn't eating enough.
If your child needs to be fed through a tube that goes directly into their stomach (either temporarily or permanently), you can get advice from the support group PINNT (Patients on Intravenous and Naso-gastric and Nutrition Therapy).
These issues can take a toll on your own wellbeing. If you're feeling isolated, you may find it helpful to search for Carers emotional support services in your area.
Sleeping and your child
If a child doesn't sleep well, tiredness can affect the whole family. Disabled children can have sleep problems for a range of physical reasons, such as muscle spasms or breathing difficulties, depending on their particular condition. Children with some learning disabilities may find it hard to understand why and when they need to sleep.
Your health visitor or community nurse should be able to suggest ways to encourage good sleep patterns. Your GP may also be able to help or refer you to a sleep specialist or psychologist if necessary. There is useful information in Contact a Family's leaflet (PDF, 1.45Mb) on this subject.
If your sleep is constantly interrupted, you can ask for a carer's assessment (or a re-assessment) from social services. They may be able to provide short breaks from caring so that you can get some undisturbed sleep. Your child might also qualify for Disability Living Allowance (DLA), or a higher rate of DLA if they already get it, if they need constant care and attention at night because of sleep problems.
Support groups and national organisations, such as Scope or the National Autistic Society, can often provide advice on sleep for families of children with certain conditions. You can find support in your area in the directory of local carers' services.
All children are different, but most show signs of being ready to learn to use the toilet at around two or three years old. Some disabled children may not be ready until they're older or they may take longer to learn. This could be because of learning disabilities or physical challenges, such as impaired mobility, motor skills or muscle tone. Some children may never learn to use the toilet on their own. Some conditions may mean that a colostomy or ileostomy is needed.
If your child's condition will affect their ability to control their bladder or bowel movements, their doctor may be able to refer you to a specialist for advice on managing their continence.
An occupational therapist can advise you about special potties or toilet seats if your child needs help with sitting, or about any bathroom adaptations that might be useful. A physiotherapist can also advise about issues such as moving and handling your child, or finding the best position for your child to be able to use the toilet.
Your local health authority's incontinence service may be able to supply items such as larger nappies, pads and bedding protection once your child is over a certain age (this may vary from area to area). If they are unable to do this, they can tell you where you can buy them privately.
If you have a water meter and your child's condition means that you have to do a lot of laundry, you can apply to your water supply company to cap the cost of your water under the WaterSure scheme. Ofwat has contact details for water companies. The Family Fund can also give grants to low-income families for a washing machine or tumble drier.
Search the directory of carers' services for local support groups and services.
Your child's ability to move around
If you're concerned about your child's ability to move around normally, your GP may refer you to a nearby physiotherapist to assess their mobility needs. As part of the assessment, the physiotherapist will discuss any mobility aids that could help your child:
- Walking aids can be loaned from the local hospital or community health service.
- Wheelchairs, buggies and adapted seating may be provided by your local NHS wheelchair service. You can get contact details for your local wheelchair service from your GP or physiotherapist.
The charity Whizz-Kidz can provide children under 18 with mobility equipment that's not available from the NHS. They also offer wheelchair skills training. Go Kids Go! also provides free wheelchair skills courses.
If your child gets the high rate mobility component of Disability Living Allowance, you can apply to the Motability scheme to buy a powered wheelchair or buggy. If you drive, you could apply for road tax exemption and a Blue Badge for disabled parking. The Blue Badge may be awarded if your child is two years old or over and has a permanent disability which makes walking difficult. If your child is under two, you may get a Blue Badge if they need to have bulky medical equipment with them or need to be near the vehicle in case they require urgent medical treatment.
Challenging behaviour and your child
Challenging behaviour can be common in children with learning or sensory disabilities. This is because communication problems can make it difficult for them to express their needs, likes and dislikes. Challenging behaviour can take many forms, from aggression to withdrawal.
Read more on challenging behaviour in children.
Communicating with your child
Some physical conditions and learning disabilities can mean that your child has little or no clear speech, or their speech may be slow to develop. You may worry about how well they will communicate with you and other people as they grow up.
A wide range of equipment and techniques, which have an umbrella term of augmentative and alternative communication (AAC) can support or replace speech, including signing (perhaps using a system such as Makaton), symbols, word boards and electronic voice output communication aids (VOCAs). A speech and language therapist can assess your child and help you decide the most appropriate aids.
Find out more about caring and communication problems.
Getting in touch with Carers Direct
For advice and support with caring issues over the phone, you can call the Carers Direct helpline on 0300 123 1053. If you are deaf, deafblind, hard of hearing or have impaired speech, you can contact the Carers Direct helpline using textphone or minicom number 0300 123 1004.
Article provided by NHS Choices