Independence and self-help skills

Being able to be independent in taking care of basic every day needs is impor­tant for all children, and especially so for children with disabilities. It may take a child with Down syndrome longer to master self-help skills as they achieve the fine motor skills needed for tasks such as using a spoon or fastening buttons more slowly than other children. They may need more practice to refine their skills but they will get there provided everyone encourages independence and is not tempted to put in too much help for too long. Most children with Down syndrome are quite competent in caring for their own personal and daily needs within home and school by their teenage years.

Importance for self-esteem

When children are making slower progress in learning to talk and in cognitive development, being independent when washing, dressing, going to the toilet and being able to help with the practical everyday chores that are part of pre-paring meals, washing up, shopping and keeping the house tidy can be very positive for the child’s sense of competence and self-esteem. Practical inde­pendence will also open more doors for social inclusion and participation in preschool, school and in the community.

Links with behaviour

Becoming independent in daily self-help skills also has benefits for social behaviour as children learn the rules as well as the skills for acceptable meal­time behaviour, for getting ready for bed and settling by themselves, for taking themselves to the toilet and for putting on/taking off clothes. In this section we include some practical advice on encouraging independence in the key areas of mealtimes and eating, bedtimes and sleeping, washing, dressing and toilet training during these early years.

Routines matter from early months

The reader may feel that most of our advice is ‘common-sense’ and/or a bit ‘strict’. However, while many children with Down syndrome happily fit in and learn how to be independent, others do not. Some children have more sig­nificant learning difficulties than most and it may be harder for them to learn acceptable behaviours and fit in to family life. In addition, it is very easy to treat children with Down syndrome as if they are younger than they are - to ‘baby’ them rather than to have age-appropriate expectations for their behaviour at home and in preschool. Even though children with Down syndrome will be delayed in their communication skills, their social understanding is good and they learn well by imitating other children. They will learn the rules for snacks and mealtimes at preschool, for hanging up their coats and washing hands - just like the other children, if this is expected and encouraged. When children do not learn to fit in, life is very stressful for families, therefore we are stressing that settled routines and high expectations from the start will help. Prevention is better than cure!

A discussion may be needed

For experienced carers and parents, the following advice will not be new and they will say, quite rightly, all the advice applies to all children and could be described as good parenting. For first time parents, the advice is intended to help them avoid unnecessary difficulties around everyday routines. Even experienced parents may treat a baby with Down syndrome differently and ’make allowances’ or ‘expect less’. In fact, because this baby may learn more slowly and it will be longer before this baby has the language understanding that will allow you to explain and reason with him or her, it may be even more important to have clear rules and routines to support this baby’s progress. Even more importantly, children with Down syndrome have good social under­standing and will use this very effectively - like other children - to demand a reaction (have the TV on, insist on favourite food) or refuse to comply (get out of bed instead of settling, refuse to sit in high chair). They know how to get the reaction they want from adults - just like other children in the toddler years. It will help if all the family or all the care team discuss and understand this and then all have the same rules, routines and expectations. Consistent expecta­tions will help all children, and grandparents, aunties, uncles, brothers and sis-ters all need to know that it is very important to teach good social behaviour

• it is the most important asset for a child with a disability in the long-term. A child who can fit in will be welcome everywhere - in day-care, inclusive school, grandma’s house and parties, while a difficult child will not be welcome every­where. A child who can fit in, stay calm and manage emotions will benefit the most from all the social and learning opportunities available to them. A difficult child will cause unnecessary stress for all the family, especially for parents and brothers and sisters. Learning to manage behaviour begins around feeding and sleeping from the earliest months.

Eating and mealtimes

Family mealtimes

During the early months, while being breast or bottle fed, babies are feeding at times that suit them but as they move onto a mixed diet and a meal pattern that begins to be the same as the rest of the family it is a good idea to have meals together as a family as much as possible. This allows babies and toddlers to learn mealtime behaviours from those around them and to be included in the social aspects of the meal. Even before they are eating at the same time, babies benefit from sitting at the table with the family in a suitable high chair if they are awake. They can be included socially, talked to and they can learn about the pattern of mealtimes. When they eat with the family, babies and tod­dlers can learn to sit still and wait between the courses of the meal. The earlier they are included in these routines, the more natural it is for them to adapt to the expectations of mealtimes. They can also observe how others eat, how they use cutlery, cups, glasses, napkins, and how they pass dishes and sauces to one another. It may be useful to note that learning how to behave at the table is very impor­tant for all children and for their families. Most families will go for meals with friends and relatives and eat out in cafés and restaurants. The experience will be difficult and stressful if any young child has not learned the rules and cannot sit still. It is a great bonus if a child with a disability can behave well when eating out with the family, eating in a relative’s home or going to a party with friends.

Starting early is important

It is easier for babies to learn the right behaviours from the start. It may seem to be acceptable to take a baby on your knee at the table rather than requiring them to stay in their own chair but this will not be acceptable behaviour when they are 18 months or 2 years old. Similarly, allowing babies or toddlers to take food from your plate may seem acceptable when they are tiny but they then have to learn it is not acceptable later. In other words, we are recommending that you ‘start as you mean to go on’ - you have rules for acceptable behaviour right from infancy. This will make life much easier for your child, for you and for all the family. It may be particularly helpful for a child who is learning to develop and to understand the world more slowly.

Independent eating and drinking

Babies move from milk to solid foods based on the current beliefs in their com­munities and the same will apply to babies with Down syndrome. If a baby has particular difficulties with feeding, then parents should seek help from their health professionals. If a baby with Down syndrome is healthy, they should be encouraged to try different foods in the same way as other babies. Some-times, they find lumpy food difficult to manage but it is important to offer a range of tastes and textures and to offer finger foods as soon as the baby can try them. Finger feeding - being able to pick up small pieces of food - is the first step to independent feeding. Similarly, learning to hold the bottle and then to hold a lidded cup with two handles are the steps towards independent drink­ing. Some children with Down syndrome move through these steps like any other child but many are slower to learn to chew effectively or to drink with­out putting their tongues on the cup therefore advice on encouraging chew­ing, choosing suitable cups and using straws should be provided by health or speech and language professionals in your community if needed. Remember to reduce the amount of milk being offered to toddlers as you encourage them to eat more solid foods - if they have a lot of milk they will not be hungry. Similarly, if you have toddlers who are reluctant eaters at meal times, make sure you do not allow them to snack in between meals.

Using a spoon and fork

Learning to use a spoon takes practice and it helps to give babies a spoon while still feeding them with another one yourself. They can begin to practise before they can manage to feed themselves the whole bowl of food. Many babies really enjoy fromage frais or yoghurt and will use a spoon to eat these while still using fingers for other food. The most difficult food for babies to deal with are those that have both lumps and liquid like meat and gravy, apple and custard and lumpy baby foods. It is easier for the baby to tackle the liquid and the lumps separately therefore it may be easier for a baby to learn to chew by picking up soft pieces of carrot or broccoli than by having them partly mashed in a gravy/ sauce. Learning to use a spoon and then a fork takes time and practice, therefore it is important to let babies start early and to be prepared to tolerate the mess they will make. Be prepared with a plastic sheet to protect the floor and a bib to protect their clothes. They will take longer to feed themselves but try to plan for this and resist the temptation to feed them because it is quicker (though this may be necessary sometimes in the morning rush to get to school).

Mealtime tensions

There may be tensions at mealtimes that babies quickly pick up on, as parents are concerned that their children eat enough and may feel a conflict about managing behaviour issues and getting their child to eat. Mealtimes can easily become a battleground between child and parent. Mealtimes are one of the first places where the baby can exert control - refusing to eat and throwing food for example. It is important to keep calm, to remember that children do not usually starve themselves and that young children need to learn acceptable behaviour.

Sleeping, settling and bedtimes

When considering behaviours around sleeping as part of independence, we are aiming to teach children to settle to sleep by themselves, stay asleep during the night and settle themselves back to sleep if they wake. Sleep is very important for health and development - for babies and for all the family. In the early months, most babies sleep for most of the 24 hour day but in 3-4 hour episodes. They slowly move to sleeping longer (8 hours) at night while still sleeping much of the day in shorter spells, then to one daytime nap and sleeping up to 12 hours at night. Most young children give up the daytime nap between 2 and 3 years of age. There is some evidence that, like adults, during the long night sleep, babies’ sleep patterns go through sleep cycles so there are times when babies rouse briefly and then settle back to sleep. Some babies wake and cry at these points rather than settle again. There is some evidence that babies who fall asleep in their own cots are more likely to settle back to sleep after a brief arousal than babies who go to sleep in their parents’ arms. Babies who fall asleep with parents present are more likely to cry for attention when they rouse as part of natural sleep cycles. There is also some evidence that when babies and parents sleep together, both sleep less soundly. Sleep patterns are thought to be important for developing regulation of other sys­tems affecting health and growth as well as to play a role in learning and brain activity. Poor sleep patterns in babies and toddlers lead to tiredness, irritability and an increase in behaviour problems during the day and also lead to tired­ness and stress for parents and other family members. Babies can be encouraged to settle to sleep on their own from early months. It may be enjoyable to rock small babies to sleep and then lay them in their cots asleep but this should not become a habit. It is important to lay babies down awake so that they learn to settle themselves to sleep - this is discussed further in the section on self-regulation (page 37). The earlier babies experience settled routines, the easier it is to maintain these routines as they grow older. Babies should go to sleep in their own cots and not in someone’s arms or in front of the TV! All this may sound like ‘Grandma’s common sense advice’ but it is so much easier to get this right from the first year - just like mealtime behaviours - rather than to be battling with a toddler who does not want to learn to stay in the cot at 18 or 24 months. Establishing a bedtime routine helps - a regular supper time, followed by a warm bath and stories read in the bedroom - and a fixed rule that children do not come downstairs or back to living rooms again until morning. Routines help children to feel secure and they make life calm and predictable for both children and parents. The most important point to make in this section is that children will be more confident and happy when they enjoy bedtimes, can put on their own night­clothes, listen to stories and then climb into bed feeling happy and secure on their own - or with a brother or sister - in their own bedroom. It really is important to start early and take bedtime routines and sleep seri­ously, as children with Down syndrome often do not go to bed at the right time, in their own beds, or sleep well. A study in the UK has continued to illustrate how common sleep difficulties are. In a sample of children with Down syndrome ranging in age from 4 years to 17 years (mean age 8 years), 66% rarely fell asleep in their own beds, 55% were restless during sleep, 40% usually woke at least once during the night and 78% seemed tired during the day on at least 2 days a week, suggesting inadequate sleep. We do not know how many of these difficulties could be prevented but our practical experience over many years would lead us to suggest we could reduce this a great deal if parents were advised to establish good sleep and bedtime routines from early infancy.

Washing and bathing

Young children can begin to learn to wash their hands, faces and bodies during bath times. Baby soaps that do not sting eyes make it easy to encourage chil­dren to wash themselves. They can also help to dry themselves from toddler years - with help at first until they can dry themselves independently. They can also be encouraged to wipe their faces and to wash hands before and after meals and to wipe their own noses during toddler years. Once children are in day care, nursery or preschool, they can join in the routines for hand washing and learn from the other children. Children with Down syndrome can begin to learn to take care of their appear­ance from 4-5 years or earlier. They can be encouraged to brush their own hair and wipe their faces using a mirror. They should also learn to keep their noses, faces and hands clean during the day. This will be helped if the adults around them also take a pride in their appearance and help them to keep their noses, faces and hands clean. The availability of moist wipes means that this should be easy to do. Children with dirty faces and noses may not be very attractive to others but most importantly, infections get spread from nose to eyes, on to glasses, hands and between children. It is very important that when children wear glasses, these are kept clean during the day so that they can see properly. Over time children should learn to wash or to clean their own glasses with suit­able wipes.

Dressing

Children will be able to take clothes off before they can put them on, therefore helping to take clothes off at the end of the day may be the first step. Pulling off socks and trousers may be the first step. Picking up clothes and putting them in the laundry basket can be a good fun activity. Removing night clothes and helping with dressing can be a step towards managing completely. Dressing up games can provide practice of dressing and undressing at other times of day. Children will progress to the stage of being able to put on clothes but still need help with fastenings. In the morning, finding clothes for the day - from a choice of acceptable clothes - can be encouraged. During the day, children can be encouraged to choose the right clothes and footwear for the activity and the weather. Children can be encouraged to fetch coats, hats and shoes ready to go out even though they still need help to put them on. Similarly, they can be encouraged to put them away when they come in, provided that low coat hooks are provided for them. These will be routine in preschools and are equally useful at home. Most children with Down syndrome will be able to partially dress and undress by 5 years of age but need help with more difficult items such as jumpers and with fastenings. They should be able to put clothes and shoes in the right place at home and school and identify the right clothes for the weather or the activ­ity.

Toilet training

In our experience, most children with Down syndrome can be dry, clean and out of nappies in the day by 4 years; many can achieve this earlier and almost all can achieve it by 5 years of age.

As the name implies, using the potty or toilet requires training - toddlers have to learn what is expected. It will help if toileting activities are associated with the toilet area from early on. Nappy changing should take place in the bath­room or toilet area as the usual routine. Once babies can sit, they can experience sitting on a potty when their nappies are changed. If nappies are changed after meals it is often possible to ‘catch’ a bowel movement in the potty. It is easier to get babies to sit on a potty without objecting if it is a routine that is introduced early. Sitting on the potty at nappy change times can be a short game - maybe with a song - and if the toddler ‘performs’ in the potty then they can be praised. After a few minutes of sitting, a new nappy is put on - there is no expectation that the child will use the potty but they will be familiar with it and use it sometimes. This kind of routine may be considered ‘old-fashioned’ by some but it provides a calm and consistent message that toilet functions are best in the potty rather than the nappy and that we are working towards this. If children spend 3-4 years using their nappies, with no indication that anything else is expected, changing this habit may be more difficult than when they have had some regular experience of associating toilet functions with the toilet area and the potty. Children do not need to be able to indicate that they need the toilet for toilet training to begin - they will learn to recognise their body signals and to ‘ask’ using words or signs during the toilet training routine. They do not need to be walking independently. Most children with Down syndrome are walking before 3 years - but not all. Some children are toilet trained before they can walk inde­pendently. As a general guide, toilet training can begin during summer months between 3-4 years for most children with Down syndrome. We suggest that parents plan ahead and start training when they feel that they will be able to keep up a con­sistent routine. Children will learn more quickly if they experience consistent expectations. They need to be taken to the toilet or potty on an hourly basis to start with. Wearing pants rather than nappies will help to indicate that this is a new, grown up phase and children will be immediately aware of bowel or blad­der movements if they are in pants rather than nappies. Ideally, once training starts in earnest, children should not go back into nap­pies as this gives mixed messages about expectations. Children should sense that you are positive and confident that they will learn to be clean and dry over time - that you are on a fun learning journey together. Seats and car seats can be protected with plastic sheets and towels. However, pull-up nappies can be used for the car or trips out if parents feel that they are not able to manage with a bag of spare pants and a potty. Once toilet training is started, the rule is lots of praise for success. Success has much to do with adults giving as much attention as possible to children at this time - to ensure they are taken to the toilet every hour and that an adult is observing them to spot and react quickly to any signs that they need to go. In this way, they can experience lots of success and praise as quickly as possible. When they have an accident, adults should react with “never mind - let’s get cleaned up and find some dry pants” and never get cross. It can help to have potties close to hand in the rooms where the child plays as well as in the toilet area. When children are attending day care or preschools, the staff should be asked to maintain the same routines for toilet training during the day. In these set­tings, the other children can often be good role models for toilet training.

Helping with daily activities

Children usually enjoy helping with laying the table, dusting, sweeping and cleaning, putting away shopping, peeling vegetables and generally joining in the activities they see adults engaged in. It can be more fun than playing with toys and while they are helping, they are learning from and communicating with the adults or other children that they are with. In day care and school set­tings, children with Down syndrome should be encouraged to take responsi­bility for simple tasks such as giving out pencils, tidying up toys or collecting books - just like the other children. They may enjoy these activities with a partner - a brother or sister or a school friend. All children should be encouraged to take responsibility in their daily lives - it could be helping with household chores as suggested above or help­ing with the care of pets or cleaning the car. Children with Down syndrome are often receiving help and support, therefore it is good to reverse this and for them to be responsible for a task and to help others whenever the opportunity arises. Some of our children find it difficult to occupy themselves in constructive play while parents are busy and really enjoy being involved in daily activities that they can learn by watching and copying rather than being left to amuse themselves.