MS AUSTRALIA | ACT/NSW/VIC | QLD | SA & NT | TAS | WA  

Being a Parent with MS

The information in this section is from the booklet "MS and parenting."

This document is available in Adobe Acrobat's Portable Document Format (PDF). If you do not already have the Acrobat Reader you can download it for free from Adobe.External Link

Download a copy of the booklet in pdf form:

This information has been designed to assist parents who have Multiple Sclerosis. It provides practical advice on how to conserve energy and simplify work procedures.

Bringing up children is not an easy task and Multiple Sclerosis can add extra challenges. Often parents feel this is a task for which they are unprepared or inadequate.

Many of the negative aspects of physical limitation can be positive when it comes to parenting. A parent's limited mobility can give the child an increased sense of security because they know their parent will be there when needed. A physical limitation need not affect a parent's relationship with a child. More than anything a child needs emotional support and love. Hence a parent with MS can be more than capable of meeting a child's needs.

Many of the practical problems of being a parent with MS are limited to the child's early and dependent years. This is the period when special equipment may be needed and alternate methods of child care may be employed to meet needs. These aspects of parenthood are covered in this section.

Problem areas

Parenting with MS is more challenging then usual because of limitations that relate to MS. Limitations may include: loss of balance, loss of movement, weakness in limbs, poor vision, fatigue, unpredictability of disease progression and lack of confidence.

Energy conservation

Planning and organisation are needed to enable the parent to cope with additional demands on time and energy. As a result, adequate rest periods need to be a part of each day. The need to set priorities is important because of the extra demands a baby will place on energy levels. Energy can be conserved by identifying those tasks which the parent does not need to do. These can be accomplished by willing helpers. The parent should not be afraid to accept or ask for offers of help.

Most importantly, a predictable and reliable routine should be established. This routine needs to be flexible while still maximising efficiency. Energy, can be conserved by: having regular rest periods, simplifying work procedures and using the correct equipment.

Furniture and equipment

Although much baby equipment is used for relatively short periods of time, it is worth selecting equipment to suit particular needs. Furniture and equipment must be chosen with limitations in mind. It should be safe, sturdy and durable and it should encourage the child's early independence. With correct equipment, most of the tasks related to child care can be accomplished safely and with relative case.

Sleeping cots

When purchasing a crib the following considerations should be kept in mind. A crib with castors enables easy relocation. Such a crib can be simply positioned next to the parent's bed for the baby's personal attendance. Lifting a baby from a crib is much easier if the mattress can be raised to a comfortable working height and the side rails can be lowered to mattress level.

A parent in a wheelchair needs enough room below the crib for the wheelchair footrests. Cot height can be lowered by cutting its legs down to size. It can be raised by using bed blocks or castors. Some parents find that they can access the crib better if the cot sides are hinged, swinging open from one end or from the middle. The mechanism that locks the rail in place differs from crib to crib. Some have a foot operated mechanism which can be reached with one hand from a wheel chair. Available cribs should be trialed to find one that suits. A pram can also be used as a bed tip to approximately four to six months. Due to its size and transportability it makes a good alternative.

Bed clothes

A lightweight foam mattress is easier to lift than one with inner springs. A plastic mattress cover will make cleaning up easier. Make sure the plastic coverings have plenty of padding on top so the baby does not suffocate or get hot. Fitted sheets will make for less work as they can be slipped over the corners of the mattress with one hand and need little smoothing. Sleeping bags are easy to care for, have full length zippers and are available in summer or winter fabrics.

Bumper pads made from foam, positioned around the side of the cot, will protect the baby's head when it is lifted or lowered. A Pillow Slip under the baby's head will help catch dribbles. This may enable several days of use from the sheet as long as there is also adequate protection over the nappies.

Sleeping routine

The baby should be encouraged to sleep through the night. The baby's sleeping cycle can sometimes be manipulated to suit the parent's needs with persistence and loving care. When wakened in the night, ensure the baby is fed, has a clean nappy and is comfortable, before returning him/her to bed.

If the baby is having trouble settling down to sleep, the local doctor or Nursing Mothers Association may be able to provide specific information and techniques to use with the baby. Remember that playtime is for the daylight hours and the parents' need for adequate sleep is essential. If the parents are fatigued or stressed, the baby may also become stressed.

Play areas

Conventional wooden or plastic playpens are available. Some come with floors which keep the toddler from moving the playpen around the room. Castors on the base of the playpen enable it to be relocated. Ensure that the playpen has a gate with a manageable opening device to allow access to the playpen. A gate will prevent the need to lift the toddler.

Another option which many parents find adequate is to section off a "safe area" in the house in which the child can play. High backed lounge chairs can be arranged to enclose a corner of the room while the parent is working nearby. A small mattress on the floor with toys will entertain the baby for some time.

For those parents needing to work in another area of the house for extended periods of time, an intercom system will alert them when the baby wakes.

Lifting and carrying

Until a baby begins to crawl and even for some time after that, it must be lifted and carried from place to place. Parents who have difficulty bending can minimise lifting by having as much equipment as possible at waist or wheelchair height. The child should be free of restrictive clothing so it can assist by holding onto the parent. The baby will also help by learning to climb with supervision to places where it cannot or need not be lifted. A parent can reduce the amount of lifting by having a level working surface to bathe, change and dress the baby. The strain of carrying can be reduced by the use of prams and baby carriers, by strapping the baby to the parent's body and by encouraging independent mobility in the child.

Harnesses

A harness is a useful piece of equipment. It is appropriate to be used from the age of six months through to five years, serving various functions at each age. If one is purchased, it is important that fastenings can be managed easily. Velcro, can be substituted for buckles and clips. A harness can be used to keep the child securely in a high chair, stroller, swing or in its parent's lap. Some parents find it best to keep the harness on the child all the time and use it to lift the baby from the floor, playpen or crib. Other parents find it convenient to have several sets of harnesses, leaving them attached to various pieces of equipment.

The baby can be slipped in and out of the appropriate one. By harnessing a Young toddler into the parent's lap, the parent's arms are left free to manoeuvre the wheelchair or to carry a bag. The harness can be lengthened to allow the child to walk beside the parent while attached securely to a belt or wheelchair.

Slings

Slings are available in mesh and other fabric and can be worn at the front or the back. Slings worn on the back are only appropriate for an ambulant parent with good balance and upper limb strength. For a parent in a wheelchair a front worn sling would be appropriate. A baby could be supported by the sling while lying or sitting on the parent's knee. Thus the parent's hands are freed.

When the baby is old enough to sit propped, a harness should be used in the pram or wheelchair. As the baby grows, the amount of carrying will decrease.

Prams

Prams should be trialed in a store which offers a good quality selection. When choosing a pram, select one which: is well constructed is well sprung is easy to operate has large wheels that will handle curves has a one hand operated push handle which is at a comfortable height. The height of the pram should allow the parent to lift the baby in and out. Trialing prams will ensure that brakes and harnesses are easily managed. Remember, the most expensive is not always the best option.

Car seats

A baby capsule is necessary to take the baby in a vehicle. A safety scat is required for a baby who can sit unassisted. Harnesses on these need to be strong. They may be difficult to operate and assistance may be required. Car seats are now available that can be used from birth to approximately four years. These may be easier to use than a capsule.

Feeding

Feeding is a never ending business, or so it may seem with a new baby. There are various ways that a baby can be fed: mother's milk from mother's breast; mother's milk from a bottle and formula from a bottle.

Breast feeding

There are practical advantages to breast feeding. It eliminates much work as the milk does not have to be prepared and bottles do not have to be washed. A baby can be breast fed in a number of ways: Bean shaped pillows are available which can cradle the baby in the mother's lap. A sling worn on the front may be used to hold the baby close to the breast. Sometimes the easiest and least tiring method is to feed the baby while lying on the side facing the baby.

The arm holding the baby's head can be propped with a pillow. A health Sister or lactation adviser will give advice on the best feeding positions for mothers with particular needs. Breast feeding should be relaxing and enjoyable for both the parent arid the baby.

Breast milk deteriorates at room temperature within six hours. It can be stored in the refrigerator (4°C) for up to 48 hours and in a frost free freezer for up to two weeks. If adding cooled breast milk to already frozen milk, ensure that the two weeks is calculated from the first amount collected. Breast milk may be stored in a deep freezer (-18 to -23°C) for three months. Milk should be stored in a scaled container which is clearly labelled and dated.

Frozen breast milk should be defrosted by placing the container under cold running water and gradually increasing the water temperature until the milk is defrosted. Transfer the milk into the bottle and place it in -t jug or saucepan of hot water until body temperature (36-37°C). Do not place it in boiling water as the milk will curdle. Keep the thawed breast milk in the fridge as it is likely to grow bacteria at room temperature and discard unused thawed breast milk after 12 hours.

Certain medically prescribed medications, over the counter drugs and alternative medicines (e.g. herbal remedies) may pass to the baby through the breast milk. Talk with the local doctor about any drugs being taken and any possible effect they may have on the baby.

Bottle feeding

To bottle feed, position the baby in any of the ways described for breast feeding. Alternatively, it may be easier to prop the baby in a pram or baby scat. In this case, the loss of physical contact between the mother and child can be compensated for by stroking and talking to the baby during feeds. If the decision is made to bottle feed, various equipment will need to be purchased. Before buying bottles, nipples and tops, various types should be investigated to determine which are easiest to handle. Plastic bottles with screw on tops are light and unbreakable.

Bottles should be soaked immediately after use so that thorough cleaning is easier. Bottles and nipples can be sterilised by boiling or soaking in a sterilising solution. The sterilising solution is a safer method. Electric sterilisers are also available. These should be trialed before purchase.

Bottles can be heated by standing in hot water. If the parent has impaired sensation, the temperature should be checked with a thermometer. A microwave oven should not be used as it heats the milk unevenly, causing hot spots which may burn the baby while drinking.

Drinking

When the baby begins drinking out of a cup, baby cups with lids and spouts are the easiest to manage. Cups which have a low center of gravity will right themselves when tipped and reduce spillage.

Colic

A baby can be burped in the traditional way by patting while over the shoulder, or by being placed on its stomach and patted. Alternatively, the same effect can be achieved by placing the baby face down in a pram. The pram is then rocked back and forth over a bump in the floor. For example, a wire coat hanger or a carpet join can be used. It should be remembered that the incidence of cot death syndrome increases when babies are left to lie on their stomachs to sleep. The baby should be turned onto its side after it has been burped.

Eating

When the baby begins to cat soft foods, an electric blender will save time and energy. Fruits and cooked vegetables can be pureed in bulk amounts and frozen in meal sized plastic containers. (Ice cube trays are a good size for those first meals). Enough can be prepared to last for a week at a time. Alternatively baby meals can be bought already prepared from the supermarket. This is a more expensive option but can be a time and energy saver.

Dishes with suction pads are good for preventing spillage. If coordination is difficult a rubber or plastic coated spoon will protect the baby's gums and teeth. Spoons specially shaped for babies can be used to encourage earlier self feeding.

Bibs

The easiest to use may be plastic or towelling cites with an elasticised or ribbed neck. These are easily removed and do not involve fiddly ties.

Highchairs

When the baby is able to sit with support, a highchair is needed for feeding. A baby should be harnessed securely into the chair. Some parents find it convenient to have the highchair on castors so it can be wheeled to the area where the parent is working. Before buying a highchair the parent should trial the options available. Consider the height, weight, stability and manageability of the chair. Ensure the baby can be put in or taken out with ease. Some parents find that the most manageable highchair is one in which the tray will lift up, over the back and out of the way.

Baby chair seat

Baby chair seats can be attached to a scat or to a table. The child is maintained in an upright position. While useful, they may be too heavy for a parent with a physical impairment.

Cleaning up

Cleaning up can sometimes be a big job! It may be worthwhile to have a plastic sheet or newspaper underneath the chair to catch dribbles. A damp, facewasher is useful for cleaning the baby before removing him or her from the chair.

Bathing

It is ideal for the parent to have a continuous work surface on which to change nappies, dress, undress the baby and bathe the baby.

A continuous surface will enable the parent to slide the baby rather than lift from one area to another. The height of the work surface must be right for the parent. A wheeled serving table or tea wagon with height adjustment makes a good portable dressing area. Nappies and other change equipment can be kept on a lower shelf and, if necessary, reached with tongs.

A baby may be bathed in a conventional bath as long as the parent is able to contain the child safely. Using a conventional bath at floor level may be difficult if strength is lacking in the upper extremity, if balance is impaired, or if bending is difficult. It is generally considered hazardous to bathe a baby in a full sized bath until the baby has gained good sitting balance. If there is no alternative the risk of an accident can be reduced by using a baby bath, a non-slip mat, or by harnessing the baby into a Bouncinette. To protect the baby's head, the faucet should be covered with rubber or protective material. After bathing it should be ensured that the baby is in no danger of falling off the change area.

While some parents find it easier to bath the baby in the kitchen, laundry or bathroom sink because of the case of filling and emptying the sink and the presence of a flat surface on the side of the sink for changing, drying and dressing the baby, these areas are riot recommended. The kitchen sink should not be used for reasons of hygiene. The laundry trough frequently has residual chemicals and other substances in it which may harm the baby. Using the bathroom basin may bruise, cut or burn the baby, as most of these basins do not have a swing away faucet. A baby bath is the best place to bath the baby. If bending down is a problem, then the baby bath can be placed on a table or stand. Height adjustable bath stands with wheels are available.

Baby baths are available with plugs for draining. Filling the bath is accomplished simply by attaching a hose to the nearest faucet. Assistance may be required for emptying the tub if it is too heavy to be carried. Alternatively, emptying can be achieved jug by jug. If the water needs changing, then the tub can be slid to a position where the plug hole is over the edge of the table and the water emptied into a bucket on the floor. The bucket can be left for someone else to empty later. Ensure that the bucket has a firmly fitting lid to prevent the baby or toddler from getting to the water.

An alternative to a baby bath is a baby seat. Used without the lining a moulded baby scat can be used as a bath scat. However, it does not have a plug for drainage.

As most models can be adjusted from upright to horizontal, a baby scat can also be used for sleeping. It is a rather bulky piece of equipment. Hence although useful, good tipper limb strength is required.

A baby can also be bathed on a bed as long as bed clothes are adequately protected.

The baby does not have to be immersed in water to be cleaned. If the parent is too tired to attempt the bathing routine then a sponge down is nearly as effective.

When the baby has gained head control and is sitting with support, baby bath seats on suction pads are available and are excellent for use in a conventional bath. They keep the baby secure and sitting upright. The baby should never be left unattended in the bath.

Siblings may also assist in holding and washing the baby when they have their bath. This can be a time of enjoyment for all. Always be present to supervise.

No matter how or where the baby is bathed, it is important that all the equipment needed is within arms reach. It is useful to keep shampoo, soap and any other liquids in plastic squeeze bottles, for example, tomato sauce dispensers. Alternatively, soap on tap containers can be used as storage containers. If using a cake of soap, it can be stabilised in a soap dish and rubbed with a sponge or bath mitt.

If the parent has impaired sensation, the temperature of the water should be determined by a floating or conventional thermometer.

If the parent has difficulty getting up from kneeling beside the bath, a kitchen chair may be useful to have beside the bath. Alternatively, installing grab rails may make bathing easier. There are also commercially available kneeling pads (for gardeners) which may be of use.

Gradually a parent can teach the child to assist with washing and drying. Eventually all that will be required is supervision.

Dressing

As the child gets older the parent can encourage him/her to dress independently. In the early years the parent will be required to do all of the dressing. It is therefore worthwhile to shop carefully for clothes, looking for features which will be the most manageable. Carefully selected clothing will prove to be an enormous time saver. Upkeep and ironing is reduced with wash and wear clothes.

Clothes chosen should have long or full length openings or ribbed necks that simply pull on over the baby's head. Garments with raglan sleeves have larger arm holes, so are easier to get on and off than clothes with set-in sleeves. Buttons and fasteners can be replaced with Velcro closures for case of management. Slip on booties and shoes are easier to manage than ones with shoelaces.

It takes time and patience for a child to learn to dress by him/herself. The child should be given as much time as needed and be praised for effort shown even if the result is far from perfect. Gradually, clothes with buttons, zips and laces can be introduced. With practise these will also be mastered by the child.

Nappies

Nappies should be changed where it is comfortable and easy for the parent and where the baby can be safely restrained. If the baby is not changed in the same place, a bag or a tea wagon can be used to store the equipment and moved from place to place.

Alternatively a set of change equipment can be left in several handy places around the house.

Premoistened tissues or wipes and liquid cleansers may be more convenient than soap and water. If finances permit, a nappy wash and fold service would be labour saving.

When deciding which type of nappies to purchase, the ease of putting them on, the work involved in their upkeep and their expense, should be considered. Disposable nappies are expensive and have to be bought regularly. Cloth nappies require only an initial outlay but need constant laundering and folding. It is a good idea to get some of each. The disposable ones are very useful for outings and convenient to use during the night. Disposable nappy liners reduce the amount of cleaning effort.

Dirty nappies can be soaked in cleansing agent in a tub before being washed in the washing machine. A front loading (rather than top loading) washing machine is generally easier to access from a wheel chair.

A clothes drier is a powerful labour saver for any mother, especially one who suffers excessive fatigue. Drying clothes and nappies over an indoor clothes airer is an aid for a parent without a clothes drier.

If a clothes drier is employed, then a germicide must be used to kill bacteria which grow in the nappies. This bacteria is the cause of nappy rash and is normally cured by drying the nappies in the sun. Alternatively, a dilute solution of vinegar can be used in the rinse.

Changing nappies

Pin Method #1:

Pin Method #2:

This method is slightly easier to manage with only one hand. It is better for active babies as there are more layers between the legs.

If pins and Snappy Nappies do not suit, nappies can be altered so that they are fastened by large buttons and elastic loops.

Preshaped nappies

These are good for parents with reduced manual dexterity. No folding is needed. Preshaped nappies take longer to dry so a few more may be needed. A preshaped nappy fastened with a Snappy Nappy is the easiest method available.

As soon as the baby begins sleeping longer hours, nappies will need to be double thickness to save the bed clothes from being soiled.

Once the baby starts rolling, it is unlikely that he/she will placidly lie still while being changed. This could pose a problem if the parent is limited by mobility and the baby is not. If the baby is being changed on a bed the parent can make good use of his or her legs to keep the baby reasonably still. If the changing is being done on a chair, a harness, scarf, or thin towel can be used to tie the baby firmly onto the scat of the chair.

Nappy rash

Prevention is much better than cure. Ointment can be bought from a chemist to prevent and reduce rashes. Leaving the baby to sleep without a nappy allows nappy rash to heal naturally. Nappy rash is sometimes made worse by the use of waterproof disposable nappies rather than cloth ones.

Toilet training

A parent may choose to start toilet training with a potty oil the floor. A potty on the floor will be easy for the child to get on and off but will be more difficult for the parent as it needs to be emptied. A non-spill model is the best kind and it should be positioned on a non-slip mat to prevent it ripping over.

Alternatively, a training seat which fits over a conventional toilet scat has the advantage that it takes little space to store. It is light to lift, does not spill and does not need emptying. It is usually at a convenient height for a parent using a wheelchair to steady the child. The seat should fasten easily and securely without tiding. With the help of steps the toddler should be able to climb up to it himself/herself.

Play

An important piece of equipment is the toy box or bag. A box on castors will roll out of the way easily. A "helping hand" (long handled pick-up stick) can be useful to assist with picking up toys and reduce the amount of bending. They are also good for retrieving things that have rolled under tables or chairs.

The plastics and pot cupboard in the kitchen are exciting and favourite play areas for babies. Be prepared for a mess.

As the baby grows he/she will demand much more of your time for playing. It is handy for the parent to prepare "surprise boxes" which can be produced during times when too fatigued to play with the baby. Children love surprise boxes which may contain bits of paper, cardboard rolls, boxes, cotton reels, empty containers, paper bags, old magazines, scraps of material and anything that crackles and looks interesting.

It is important to remember that the parent does not have to handle the job of child rearing alone. Use of local child care groups and developing friendships with other parents who have children of similar ages is encouraged. Parents can support each other emotionally and physically with offers to baby sit. Contact can be made with other parents who have MS through the Multiple Sclerosis Society. Much can be learned from experienced parents. They usually will be only too happy to share their expertise.

Parents should not feel guilty about being too fatigued or unable to play with the child. A child will often request an explanation and will perhaps be resistant to reason. A parent should always give the child an alternative.

For example "I can't play now because I am very tired but I will play with you tonight and we will play for an extra special long time", or "I can't play in the park today because I am not feeling well but how about we have a game of cards (or other favourite indoor activity) and tomorrow you can go to the park with Dad". What may be missing in the more active games can be compensated for by exploring books, puzzles and other sedentary activities. Other family members should be encouraged to take part in playing with the young child.

Parents can find out a lot about how their child is thinking and feeling by "role playing". A child usually cannot express its frustrations or worries in a normal conversation but will do so in play. For example, (an experience a mother with MS had with her daughter is related):

"One day, I found Kathy playing the role of a disabled mother with her dolls. She had found my old cane in the closet and limped and staggered as she pushed her doll carriage. She shook her arms as she fed her dolls. I pretended to visit her and said, 'I've come to visit you, you're having trouble walking. What's the matter with you?' Kathy threw up her hands and said, 'well, I have Multiple Sclerosis'. I asked, 'Are you still able to look after your children?' She replied, 'Well, yes, but homemakers come sometimes.' I asked her how she liked the homemakers. She said that she liked them but that one of them did not play with her very much."

By playing with her child in a role play situation, this particular mother was able to discover how her daughter felt about the homemakers.

Safety

As soon as the baby becomes more mobile, so will the parent! The baby will need to be watched carefully until it is old enough to be responsible for its own safety. Inevitably, the inquisitive baby will find him/herself in trouble and will learn quickly from mistakes. Many parents with MS will have limitations in mobility. Therefore the most valuable method they have for protecting a child's safety is verbal rather than physical restraint.

Parents are encouraged to always be consistent; always be firm and make their "No's" important ones so that they will be effective.

For those parents whose benches are lowered for wheelchair height, the baby will be able to reach knives and the stove at an earlier age. The parents will need to take special care to ensure that these are inaccessible to the child. Saucepan handles should always be pointed inward and matches kept cue of reach. Safety catches should be installed on all low cupboards and drawers that contain unsafe items. Medicines and poisons are safest locked away out of reach. Electric outlets must be safeguarded. The garden should be checked for poisonous plants and the yard adequately fenced. All windows should have locks and catches. Kitchen and bathroom cupboards generally should have catches that can usually be managed easily by the parent but keep a child from opening them.

When a child begins to crawl it is often wise to have a gate at the front and back door and, if necessary, one for the kitchen. Before a gate is bought, it should be ensured that it can be opened and accessed easily by the parent.

There are many safety precautions that should be taken with small children in the house. It is also important to teach the child, as early as possible, these safety precautions. A child should be taught that the stove, electric outlets, irons and sharp knives are dangerous and that they must not touch nor eat anything without permission.

In the event of a fire or other emergency, the parent should consider how to transport him/herself and the child to safety. When the child is old enough it is wise to teach him/her what to do in an emergency situation like a fire. Smoke alarms should be installed to warn of a fire or smoke.

Behaviour management

Parents with MS may have a limitation in mobility or physical strength, making discipline harder to enforce. For the child's safety and for the parent's peace of mind the child should learn to cooperate and obey from a very early age. Energy that a parent puts into setting clear rules and boundaries for the child's behaviour and enforcing them consistently, will save energy later on. Rather than depending on threats of punishment which fatigue, impaired mobility or weakness can make difficult to implement, it is far better to have the power to restrain the child verbally. The parent will have a great advantage if the child has been accustomed since babyhood to responding to verbal restraint and its cooperation has become a way of life.

Children like and respond to routine and familiarity. They also respond to praise and encouragement. They repeat behaviour that is praised and lessen behaviour that is ignored or results in punishment. The best form of punishment is a firm look or a firm "No" with an explanation of what behaviour was unacceptable. If the behaviour continues, the child should be given "time out". This can be for a few minutes with attention removed. Often good results can be achieved if behaviour management strategies are used consistently. For a parent with a partner, both must agree on the rules and regulations they set.

Most children actually want to help if they are asked to do things rather than being told. For example, "Would you help Mum by folding the clothes, please?"

School age children

By this time the child will be quite self sufficient in many areas. Very little physical assistance will be required with self-care and every day tasks. With the child at school the parent will have more time to catch up on the sleep they may have missed during the baby years! The child will be able to help the parent with some household tasks and will begin to need less assistance.

It is a good idea for the parent to become acquainted with the school teacher and keep the teacher informed about parent's health and any difficulties the child is having. Although this is a private matter, it can help the teacher understand and support the child appropriately. There are many ways of becoming involved in the school community. Some parents find that one way to become involved is through P and C meetings or by working at the tuckshop. Tuckshop jobs range from active and busy to the sedentary and can be very enjoyable. Many school librarians appreciate parents covering library books at home.

Get to know the parents of your child's friends. Transport and other assistance may be offered. These advances of friendship should not be taken as an insult! The parent should not feel guilty about friends, a partner or a child doing things for them. Often a few added responsibilities given to a child produce a more responsible and mature young adult. Young children can, for example, help set the table, feed the pets, put their dirty clothes in the appropriate place and pick up after themselves. These are all age appropriate jobs which many families expect their youngsters to perform. However, it must be remembered that school age children should not be expected to assume an adult role in caring for a parent, maintaining the household, or taking on domestic decision making. Children need time to enjoy their childhood, before being burdened with adult responsibilities.

There are many community organisations which provide assistance to make life a little easier for people with a disability, such as home help, or meals on wheels. If there are difficulties coping with the demands of parenting with MS, contact the local community health center for relevant telephone numbers.

It is useful to instil a "tamely is a team" attitude at home where each person has particular duties and general thoughtfulness for other family members. Routine can be helpful even when the children are old enough to be at school. Some children find it easier to have a set time for homework, chores and bedtime.

Parents need to keep some time for themselves to rest and recuperate. A relaxed and happy parent will usually produce a relaxed and happy child. Children are also happier and more secure when they have some established guide lines/rules/boundaries and responsibilities. Having boundaries tends to reduce the amount of discipline that is required.

You and Multiple Sclerosis

At some stage during the child's life a parent with MS may be incapable of doing anything physical for the child. In this case the parent's most valuable role will be to provide the child with emotional support and love. Time can be spent simply being with the child and in this way a strong emotional bond can develop.

Guilt

A child may feel guilty about the parent having MS. The child may believe that the MS had resulted from something bad he/she had done. An exacerbation of MS symptoms and a consequent period of hospitalisation may cause a child to think it to be due to it's "naughtiness". One child expressed guilt by saying, "If I cost any money, Mummy will get worse". This child had perceived that his parents were having financial difficulties and that money was essential for paying his/her mother's medical bills. Children, even when very young, are unusually perceptive. It is important to be open and honest with them but also to ensure that they are not burdened with any adult concerns.

"I stopped feeling guilty about my children suffering deprivations because of my disability. I realised that children do not have any more right to a perfect parent, that is one who is not handicapped, than a parent does to a perfectly formed child. We all take our chances. Also, I had never spent much time thinking about my role as a parent and my mothering skills. It has been good for me to examine and develop clearer views about myself as a parent, a mother and a person. I think that I now have a better chance of becoming the kind of parent, mother and person I would like to be."

Some further advice from a parent with MS

"Become an organised and efficient parent. Choose a good gynaecologist and paediatrician. Seek assistance from every resource available to you. Keep time for yourself and look after yourself. Enjoy this time of your life!"

For more information see:

Source - Multiple sclerosis and parenting by Allison Banney produced for the Multiple Sclerosis Society of Australia. © 1996, The Multiple Sclerosis Society of Australia.

Go to Top