Down Syndrome South Africa
Your baby has Down syndrome. Just like all other babies he can’t walk, talk or feed himself yet.
The fact is, when he is older, he should be able to do all those things – providing he gets the support he needs.
With the proper support he has a good chance to learn to read and write, go to a mainstream school, establish friendships, pursue interests, get a job and live a semi-independent adult life.
How will our child grow and develop?
The process of development is divided into: gross motor, fine motor, language, cognitive, social and self-help skills. All these areas are linked to one another and progress in one area affects progress in others. Factors such as muscle tone and general health may affect the rate of skills development.
The average height of a child with Down syndrome is less than that of the rest of the population. A controlled diet and regular exercise prevents any excessive weight gain. Their bodies mature in the same way however, and they too will reach puberty in their early teens.
Youngsters with Down syndrome acquire new skills and develop individual talents as they grow, benefiting from all life experiences as well as their inner abilities. People with Down syndrome can gain physical and mental skills throughout their lives. The ability level of children and adults vary considerably, but the average rate of progress is slower than in ordinary people.
How can we care for and stimulate our child?
You as the parents are usually in the best position to care for and stimulate your child, especially if you are willing to accept assistance in developing your parental skills.
Learning for the baby begins as soon as he is born. Our babies tend to be quieter and cry less than other babies. It is important not to leave him alone in his cot, staring at a featureless ceiling. When he is awake he needs exercise for his body and his mind. Make his surroundings bright, colourful, mobile and sometimes even noisy. Contact a Toy Library (numbers on page ) for ideas.
Encourage eye contact by talking and singing to the baby during feeding, playing and any interaction.
As new parents of a child with special needs, there are a number of services available to assist your child in his development. Early stimulation (early intervention) is a good start to planned assistance for your child. These programmes could include the services of speech therapists, physiotherapists and occupational therapists.
General rules that apply to all stimulation or early intervention are:
• Readiness: Look for signs of readiness, e.g. the baby who holds toys and puts them in his mouth can be given a baby rusk to hold and chew on.
• Repetition: Whatever you’re trying to teach your child will have to be repeated several times before he grasps what is expected of him.
• Praise: Be generous with your praise, especially when your baby really deserves it.
• Time: Allow sufficient time for your child to experiment. It may take him longer to get a task done on his own but trying to do something for himself is the only way a child can really learn.
• Confidence: Be relaxed when you are handling the baby.
The recommendations regarding the stimulation of the development of your baby discussed in this booklet are very brief, yet sufficient for the first few months.
The exercises are only meant as a general guide. If your child only uses the exercises in this book, it would help a great deal if his progress is assessed every three to six months by a professional working in the area of early stimulation (e.g. speech, occupational and physio-therapists). You will be able to get practical guidance in the form of
• A few basic exercises;
• Some toys to use constructively;
• Some games to play, with clear instructions;
• Feeding, dressing and general care tips; and
• Guidelines on how to detect any secondary disability.
How can we develop our baby’s gross motor skills?
Begin with head control, proceed down the back and to the legs, from the centre-line outwards. Generally progress from the larger to the smaller body parts (e.g. arms to fingers).
• Your baby needs to lie on his back, stomach and sides during the course of the day (from birth)
• When your baby lies on his stomach he may object, but these objections take the form of movements that are ultimately beneficial. When the baby is in this position the surface under him must be smooth and firm. If the baby lies limply, tickle him with your fingers or, if he is naked after bath time, stroke his whole body with a soft hair brush. This is good for sensory stimulation (from birth).
• Lay your baby on his back on your knees or on a smooth surface. Take him by the shoulders and raise him gently until the weight of his head can be felt. At first his head will hang limply and the lifting will have to be slow and limited. After a few days some tension will begin to show in the neck muscles and he should gradually begin to lift his head. As soon as he does this he should be laid back for a rest after which the exercise should be repeated twice more. This exercise should also be varied by holding your baby slightly to the side and getting him to lift from this position as well (from 6 weeks).
• When carrying your baby, hold him against you, facing away from you so that he must lift his head and maintain that position to see things (from 6 weeks). See photo 2.
• Sit your baby in front of you, holding him by his shoulders. Tilt him from side to side, back and forth and in various directions to encourage head control. As your baby’s neck becomes stronger, you can rock him in different positions. You should deliberately support his head less as he grows older and stronger (from 8 weeks). See photo 3.
• Place your baby in the middle of the room on his stomach. Walk past and around him so that he must lift his head to see you (from 6-8 weeks).
• Lay your baby on his stomach, propped up on his forearms. Introduce a toy within his field of vision and say “look Peter”, as you begin squeaking and moving the toy. Gradually raise the toy so that he will have to follow it with his eyes and lift his head. Vary the objects and give plenty of praise and reward (from 8 weeks – 3 months).
Place a rolled towel or blanket under his chest for support, if necessary. Remove this as he becomes stronger.
• Place your baby on his stomach on a large, slightly deflated beach ball. Support him securely under his arms or at his waist and roll him gently from side to side and back and forth. A friend or family member can hold a toy in front of him to encourage him to raise his head and watch and move (from 8 weeks – 3 months). See photo 4.
• Encourage your baby to turn from side to back and then from back to side again by introducing an interesting toy at his eye level. Move the toy in the direction you wish him to move and, using your free hand, physically move him by bending his leg (the leg opposite the direction in which he is turning) and turning him to assume the desired position. Once the leg and hip are in position, he will strain and move his body (4-6 months). See photo 5.
• Lay your baby on a blanket on his stomach, then roll him onto his back. He must push up from the forearm with his fingers open (his hands must not be clenched). Gradually lift up one end of the blanket, thus prompting him to roll over in a continuous movement. Prompt him through the entire roll from his stomach to his back At the beginning you must have to support the back of the head so that he does not bump it when he rolls over and gets a fright (from 4 – 6 months).
Leg exercises: (best given when you change your baby’s nappy)
• Lay your baby on his back. Lift his feet one by one, raising then about two inches (6cm) and letting then drop gently onto the changing towel. The aim of this exercise is to get the child to make conscious movements. Four times will suffice and as he grows stronger you may raise his feet higher before letting them drop, so that he gains practice in control (from birth).
• Hold your baby’s foot around the ankle, using your thumb and forefinger. Tickle the sole of his foot from toe to heel. As his foot draws back resist the movement by keeping your hand still. Exercise both legs (from birth). See photo 6.
• Attempt to place your baby in a sitting position. This position allows more scope for movement and play and permits him to see well in three directions. As soon as his head control begins improving, a baby relax chair will be necessary. There are various types available on the market (use from 4 months).
• Your baby can be propped up in his pram or in a corner of a lounge chair with cushions on his sides and something up against his feet to stop him from sliding down. He can begin by sitting for short periods at a time. As his neck and back get stronger, the sitting time should be increased. Small babies sometimes need a little extra support at the sides of the head. Use folder nappies or a pram cushion (from 5 months).
• Put your baby in his relax chair and inside the pram or pushchair with the canopy attached. Toys can be hung from the canopy for him to focus on and reach for. Toys that make a sound are useful. Household articles can also be used. Variety, and not the cost of an item, is important (from 3-4 months).
• To encourage your baby to kick, a string of pigeon bells or rattles on a piece of elastic may be draped across his feet while he is sitting in his chair. Two large rings (coloured bracelets), as well as other noisy objects, may be threaded onto a string. Put his feet into the rings so that the rattles make a noise when he moves his legs.
• Once your baby has good head control and his back is strengthened, take a large blow-up swimming tube, sit him inside it with his hands resting on the tube and his feet pushing against it. The tube will also break his fall when he topples over.
How can we develop our baby’s fine motor skills?
• Co-ordination between the eyes and hands leading to planned movements, controlled by vision.
• Progress from using both hands to using one hand.
• Palmar grasp to fine control with fingers and thumb.
Eye-muscle control and eye movement:
• Hang large, bright pictures around the crib, e.g. pages from magazines, wrapping paper, aluminium foil balls and calendar pictures. Change frequently to avoid boredom.
• Hang mobiles over the cot and/or pram. Bought ones with music are superb, but light ones that move in the breeze are just as effective. The first mobile can also be changed from time to time by using pieces of aluminium foil, tinsel and coloured paper.
• Introduce a bright, noisy object, e.g. rattle in the baby’s line of vision and move it slowly from side to side. First his eyes should follow the toy and then he should begin turning his head to follow it. At first you may need to physically turn your baby’s head with your hand to introduce the idea. Praise him for turning this head and wiggle the toy for the reward. When this has been mastered, move the toy up and down as well.
• Encourage personal eye contact with your baby. Encourage him to look at your face and your eyes and to respond to your voice.
Reaching and grasping:
• Hang mobiles, toys, etc. within easy reach.
• Hold out a toy in front of your baby’s hand. Physically help him to reach for the toy and then help him to grasp it. Change such toys frequently – varying the size, colour, shape, weight and texture, in particular, is important. Many areas have toy libraries where a large variety of toys can be borrowed for a small fee (see addresses on page …).
• Take your baby’s hands, draw them to your face, run them over your features, touch your hair, blow into the palms of his hands and gently nibble the skin of his hands.
• Stroke the back of his hands from his fingertips towards his shoulders to encourage him to open his hands.
• Let your baby play with one toy, teach him to hold one toy with both hands, then give him two similar rattles, one to be held in each hand, and teach him to bang them together. Encourage your baby to hold his own feeding bottle. You will initially have to prop his hands in position and support the weight of the bottle. As he becomes stronger, you can reduce the amount of help.
• Toys attached (with suckers or elastic bands) to the tray of a high chair are also useful.
How can we develop our baby’s social and self-help skills?
• Progress from total dependence to increasing independence in daily physical routines.
• An awareness of his own body and its actions.
• Satisfaction of his basic social needs.
Emotional and social needs:
• A sense of security engendered by physical contact is vital for your baby’s emotional development. Cuddle and handle him firmly and lovingly. Encourage members of the family to handle and talk to the baby. Feeding and bath times should be pleasant occasions.
• During the first few weeks your baby may show very little response, but it is very important that you maintain the habit of talking and smiling at him. Regular encouragement in the form of a smiling compliment whenever the baby makes a useful movement will encourage repetition.
• Place you baby near you during family events, such as meal times or TV time, when he is awake. Do not leave him lying in his cot.
• Encourage your baby to respond to you, e.g. by lifting an arm when you want to pick him up. See photo 7.
• Mirrors are the best toys for showing your baby him own image and how his face changes when he smiles. Call him by his name. See Photo 8.
• Play games with your baby like “Peek-a-boo”, “Clap hands” – the baby holds onto your small finger while you clap, “Body parts” – “Where is Jimmy’s nose?” Tickle his nose.
• Make sure that you take your baby out with you as this will facilitate your emotional healing and acceptance. It also will serve as stimulation for your baby to experience different surroundings.
• By not hiding your baby but including him in family and community activities it will help for future support and acceptance.
Hunger is one of the first experiences your baby has outside the warmth and comfort of the womb. When you satisfy his hunger (by breast or bottle feeding), your baby knows that to be in his mother’s arms is all he needs to be at peace with the world. You are establishing a relationship of trust and love what will affect his whole life.
The physical contact between mother and baby ensures eye-to-eye and eye-to-mouth concentration on the part of the baby. This is now regarded as an important first step in communication.
Mothers are encouraged to try to breast-feed. Successful breast feeding does require patience. You may want to seek help from your doctor, clinic, La Leche league or Breast-feeding Association. The young baby’s sucking and swallowing ability may be poorly developed, but will improve steadily. Do not lose courage and remember that breast-feeding is the healthiest start you can give your baby in life. Remember that whatever you eat or drink can affect your baby; thus stay with healthy food. Drink fluids regularly, especially water, and try to stay relaxed and calm.
The La Leche League is an international organisation and has pamphlets available on the breast-feeding of babies with Down syndrome (see list of books on page 27 for more information).
If you cannot manage breast-feeding, bottle-feeding is a good substitute. Experiment with size and type of the teat. If your baby has a poor sucking reflex, resist the temptation to enlarge the hole in the teat. Rather cut a very small cross over the existing hole with a sharp blade. Keep the baby upright when you are feeding him because food can be inhaled into the lungs in small quantities which could lead to later infections. Do not lay him down until you are certain that he has broken most of his wind. Lying him down on his stomach often helps.
If your baby forms a seal with his lips and tongue around the teat, twist the bottle and break the seal at intervals. A small hole can also be made at the top of the bottle to let in air or teats with air holes could be bought.
Because your baby’s sucking ability may be weak initially, it may be necessary to persevere longer than usual to feed him. The child with Down syndrome will often have to be woken for his night feeds. This is very important to keep blood sugar levels up. He may not wake and cry like other babies. Plan these feeding sessions carefully as a mother’s sleep is also very important.
Keep a good check on his weight to see that he is getting sufficient food in the early weeks. Additional help for feeding problems can be sought from a speech therapist.
After the age of one, the baby can be weaned from the bottle. Experiment with various kinds of cups. Those mostly used are small plastic cups of feeding cups. Begin with small amounts in the cup. Cups with a straw are very good as the sucking action helps to strengthen the muscles in and around the mouth. Use 250ml Fruit juices once solids have started to start of as you can squeeze the box to aid the child/baby.
Don’t mistake a tongue-thrusting action for rejection. This often continues for longer in a baby with Down syndrome. Persist and experiment in regards eating and drinking.
Chewing should be encouraged before the age of one. If put off too long, the baby might fear choking and then it will be very difficult to wean him to solids. Start to wean your baby onto solids as you would for any baby.
By the age of two, most babies should be eating and drinking by themselves fairly competently.
Breast-fed babies should be encouraged to drink from a cup so that a variety of liquids can be added to their diet. They usually do not take to a teat or a variety of liquids in their mouths easily.
Spoon-feeding can usually be begun at three months. Try to avoid sweet tasting foods. Once porridge, fruit and vegetables have been introduced, try to offer him a variety in order to avoid later fussiness. Once your baby can swallow very smooth foods, introduce more textured food, e.g. vegetables mashed with a fork.
An inability to retain food is quite common, as is erratic weight gain. However, if there are any signs of dehydration, failure to thrive or any persistent tendency to regurgitate semi-solids, you should contact your doctor immediately, as in some cases intestinal blockages may be present.
Dietary supplements may be introduced fairly early. The dosage should always be in accordance with the specific preparation instructions.
Allergies to milk are very common. However, by the age of two, these feeding problems are usually much less.
It is often noted that the bowel functions of children with Down syndrome are abnormal, although this can be unduly exaggerated. However, irregular bowel movements do sometimes occur and, if persistent, should be mentioned to your doctor. If your baby does not pass stools easily, it could help to handle him more often, and so strengthen his stomach muscles and increase his general activity, or consult your clinic for dietary changes. Remember that breast-fed babies do not have daily stools.
There is often an irregular pattern of teething. The first tooth should appear between 5 to 21 months (on average at 15 months). Use standard analgesic gels for teething problems.
During the first few months sodium or calcium fluoride, dissolved in water or milk, can be given to promote healthy teeth formation in your baby, especially if there is a deficiency of these substances in the local water supply. These substances are added to certain milk formulas, and you should check to this on the tin before adding it to your baby’s diet.
How can we develop our baby’s communication skills?
Hearing sounds and random vocalisation
• Expose your baby to a variety of sounds, e.g. talking, music, bells clanging, rattles and whistles, and bring his attention to the source of the sound. Don’t bombard your baby with noise constantly. A daily variety of sound is what is needed. Repeat the sounds he makes to encourage him.
• When calling your baby, use his name. Call him from different directions.
• On the whole, babies with Down syndrome do not cry much. Some people may tell you that crying is good for his lungs. This is so, but keep yelling periods short. Prolonged crying is not good for any baby. Babies cry for a specific reason, such as hunger, pain or discomfort. This is one of his first ways of communication. By responding to his cries you are teaching him that he can communicate his needs and this will encourage later speech development.
• Encourage your baby to make sounds. Take his hands and allow him to feel your lips move while you say “wa-wa-wa-wa”. When your baby makes a sound, put his hand against his lips so that he can feel there the sound is coming from. See photo 9.
• Work on imitation of sounds, especially those that require movement of the lips and tongue, such as da-da-da-da, ba-ba-ba-ba, ta-ta-ta-ta, wa-wa-wa-wa and ma-ma-ma-ma. Hold your baby so that he can watch your mouth. Copy his sounds, pause for him to reply and copy him again. When this game is established you can begin to introduce one new sound at a time and encourage him to imitate you.
• Repetition helps a child with Down syndrome a lot, especially when the mother’s own voice is used. You can use a tape recorder to record your favourite repertoire of lullabies, simple stories, the ABC or even simple words like “cat” or “dog”. This will keep your baby quiet and happy, while he is learning at the same time.
• Tickle him and teach him to laugh.
• When speaking to your baby, speak clearly with short sentences. Don’t use baby language, use the right word for the right meaning, e.g. “ Mummy is going to bath Kim. Feel the water. It is warm. We’ll rub soap on your body”.
• As you dress of feed your child, explain clearly what you are doing. Sometimes you can repeat key words like “water” and “warm” and specific body parts such as “arm” and “foot”. Remember repetition makes learning easier for children with Down syndrome.
• Teach your baby to wave goodbye and say “bye-bye” or “ta-ta”. See Photo 10
• Teach your baby to copy actions, e.g. “no-no” as a sign to shake his head. At first when you say “no-no” you can help him by moving his head. After plenty of practice your baby will associate “no-no” with his head shaking in that specific way.
• Talking to a mirror is very stimulating for a baby.
• Be consistent with the words you use, e.g. “dog” must not sometimes be “ doggie”.
• Respond to your baby’s attempts to communicate.
These attempts may be a cry, a gesture or an attempt to pronounce a word, e.g. a cry when he is hungry is an early form of communication. By responding to it you are teaching him that he can have an effect on his environment.
Later he may use more gestures, e.g. lift his arms when he wants to be lifted or point to the fridge when he wants a drink. Here you can help by responding and giving the words for his message, e.g. “You want juice?” or “Must I pick you up?”
Remember that he will be able to understand words and sentences before he can say them. Therefore it is very important to talk to him a lot even before he is talking himself. When he is older you should however expect language from your child before reacting to his gestures. This would prompt him to start talking in order to lower his frustration level.
Research has shown that reading improves the vocabulary of the child and has a positive influence on speaking. Reading can be done early on (2-3 years) with the use of flash cards. These cards are ordinary pieces of paper or card board with the names of all kinds of items written on it. These cards could be attached to the items around the house or pasted in a book next to pictures of the items. The written word must always be accompanied by the spoken word. Try to use full sentences when you talk to your child with Down syndrome.
In most children with Down syndrome speech and communication seems to be delayed. Interaction influences the way in which a person socially integrates with people around him. Therefore parents are encouraged to set high standards regarding the communication skills of their child with Down syndrome and always expect more language from their child.
Is discipline important?
Routine and discipline applied consistently are essential for the upbringing of all children as it adds to their feeling of security and helps with the development of self-discipline. However as they get older routine needs to be altered occasionally so that they can adapt to change.
There is little difference between the discipline of a child with a disability and one without it. The child with Down syndrome however, will need more time and help as well as more frequent reminders to learn.
A busy, happy child is usually a well behaved child. Teach him right from wrong. Keep your instructions simple and be consistent. Do not be afraid to set standards for his behaviour. People with Down syndrome can learn and therefore inappropriate behaviour should not be accepted. To be accepted into society he must also abide by certain rules. Tell him what to do rather than what not to do. Say “hold the rattle” rather than “Don’t throw the rattle”.
Teach by example –
• Show him what to do
• Practise with him the things you want him to do.
• Be consistent in your instructions and expectations and use short, simple sentences.
Correction should be immediate, if possible, and without anger. Do not threaten, scold or nag. Disciplining your child is a personal matter but o method of discipline should cause permanent damage. A change in the tone of your voice will usually work well enough.
Will our child be able to go to school?
Children with Down syndrome benefit from the same community programmes as other children do, such as play groups, nursery school classes, swimming and music lessons, story times at the library, dance classes and other social activities.
Children learn to work with peers, make friends and enemies, get into trouble and learn to take responsibility for their behaviour.
Once the child has reached the age of seven, schooling is compulsory. The latest Education Legislation makes provision for learners with disabilities to be accommodated in the mainstream. Therefore it is nowadays generally accepted that children with Down syndrome, when given the proper support such as curriculum adaptation (if needed), could attend regular schools.
International research has proven time and time again, that children with Down syndrome benefit more from the normal school environment and that they can make much better progress than has previously been expected. It has even been scientifically proven that children with Down syndrome who have been included in the mainstream of life from birth onwards showed an improvement in intellectual ability when compared to children who have experienced segregation.
Do we have to make special financial provision for our child with Down syndrome?
This is something many parents are worried about. Parents in general plan for all their children and start to put plans in place in order to assist all their children to go to a tertiary training facility, to have a little nest egg when they get married, etc. Your plans need be no different for your child with Down syndrome as he most probably might need to be trained for a job that he would like to do. Ten to one he would also like to move out of his parent’s house and live semi-independently.
Just like with your other children it would be wise to make financial provision through establishing a trust, a planned savings programme or a suitable insurance policy or even a combination of these options. Contact your nearest Association for some advice on establishing for example a Trust (which happens to be a really good option for your whole family).
Do we receive any financial support from the government?
The government only provides grants for certain people such as elderly people or people with disabilities and for specific groups of children. There are a few grants that may be given to children with disabilities, the applicant and the spouse must meet the requirement of the means test:
Child Support Grant
Child Support grant which is more or less R460 per month from 1st April 2021. This may be given to a person who takes care of a child under the age of 11 years.
Care-Dependency Grant which is more or less R1 890 a month from 1st April 2021. This is given to a person who is taking care of a child, who is severely disabled or very ill and needs special care because he or she cannot be left alone and needs help full time at home. The applicant must submit a medical/assessment report confirming permanent severe disability.
If you want to apply for any of these grants, the government asks you to prove that you really need the money. Contact your nearest Down syndrome Association for more detail…
What are our child’s prospects for the future?
It is not possible to predict with any accuracy what your child’s\future prospects are. The range of functional ability amongst individual children with Down syndrome is very wide (as it is with non-disabled children). Tests conducted at an early age may not give a reliable indication of your child’s future developmental progress.
The development of your child with Down syndrome is not determined by the type of Down syndrome that he has or the number of physical characteristics which are visible.
A common mistake made in the past was to expect too little from children with Down syndrome, so aim high and provide him with the maximum comfortable stimulation. As parents you have to accept the challenge of providing your child with Down syndrome with the appropriate early intervention from birth on and give special attention to ensure disciplined and socially acceptable behaviour.
The child with Down syndrome who is accepted with his disability, not overprotected, and given the opportunity of developing his potential, will be able to adapt successfully to society, to attend school, make friends, find work, participate in decisions which affect him, and make a positive contribution to society. The person with Down syndrome has the same emotions and needs as any other person and deserves the same opportunities and care.