Preconception care and counseling are recommended for a woman with a disability who is considering becoming a parent. Click on our PRECONCEPTION webpage for more information.
Once you have decided to become pregnant, tell ALL of your health care
providers. Make sure that all medications are reviewed for potential side effects on the
baby. Discuss how your disability may be affected by the pregnancy, and how your
disability may affect your pregnancy.
Eat properly
before and during pregnancy. Good nutrition will benefit you and your baby.This is
NOT the time to try and lose weight; however, it is important to avoid excessive weight
gain. Women with disabilities that affect mobility may have a harder time losing weight
after delivery.
Get plenty of rest during
pregnancy. If fatigue is an issue for you when you are not pregnant, you may require even
more frequent rest periods, especially in the first and third trimesters.
Begin to consider your choices for a pediatrician well before the baby arrives. Get
recommendations from other parents. Check your health insurance and be sure to select one
that accepts your coverage. Consider how far away the pediatrician's office is from your
home. You will be making frequent scheduled visits during the baby's first year as
well as unscheduled visits if the baby becomes ill.
-
Arrange an interview
with the pediatrician before making your final choice. This is not an unusual
request, as many expectant parents do this. Make sure that the office is physically
accessible to you. During an examination, it is important for a parent to be able to
participate in an examination. Will the physician cooperate with examining your
child on your lap as opposed to the examining table if this is necessary? If you suspect
that the physician is not supportive of your becoming a parent because of your disability,
find another. You want to have a good working relationship with your pediatrician and
he or she must be willing to work with you to address your needs as a parent with a
disability.
Decide whether you want to
breastfeed or bottle feed your baby. Read up on this topic and decide which will
likely work best for you. The
following site may be helpful: AAP (American Academy of Pediatrics)- A Woman’s Guide to
Breastfeeding.
Prepare your home. Consider
what changes you will need to make in your home. Decide whether you will want to
have "baby stations" in different areas of the house to make it easier on you.
Avoid buying a lot of expensive baby clothes, furniture, and equipment. Remember that
babies outgrow the infant stage very quickly. Accept offers to borrow equipment and
even clothes from family and friends. When purchasing equipment, make sure that you can
work it if manual dexterity, muscle weakness or tremors are an issue for you.
Infant car seats can be difficult to manage, but they
are absolutely essential to use and required by law in all 50 states. In fact, hospitals
require that you have a car seat to put your baby in before you leave the hospital. Take
the time to find one that you can use so that you won't be tempted to take your baby out
in a car without it. Be sure to use a "federally approved" seat and learn how to
install it properly. (If you are borrowing a seat, don't use one made before 1982.
The federal requirements did not go into effect until 1982).
You must use a car seat EVERY TIME
you take your baby out in a car, no matter how short the trip might be. Many people don't
realize that most fatal accidents occur within 5 miles of home and at speeds of 25 miles
per hour or less. If you are a two-car family, try to get a car seat for each car.
This can save a lot of hassle, time and energy, but can be expensive. Remember, too, that
you will need a toddler seat as the baby gets older. If you think two car seats are
needed, try to work with one seat until the baby is ready for a toddler seat.
Once your infant weighs 20 pounds, he or she will be ready for a toddler seat that
will be used until he or she is at least four years old or weighs at least 40 pounds.
Avoid buying car seats from garage sales and flea markets, since you won't know whether the seat is in good working order or whether it has been involved in an accident.
Remember: Use a car seat every time, in every car!
Visit your local library or bookstore. There are numerous books available for expectant parents. Resources are available in alternative formats for those who are visually or hearing impaired. These books can be very helpful and reassuring. You will have many questions. Often these books will have the answers and tell you when to discuss a concern with a health care provider. The internet can also be a source of information.
Refer to the RESOURCES section of this webpage for links to some helpful sites.
Please go to our PREGNANCY page for more information on pregnancy and disability.
The following sections are meant to increase your awareness of some potential issues that you may need to address as a mother with a disability.
Special note on medications:
Use caution whenever there is a change in
your medication regimen. Some adverse side effects, such as drowsiness or dizziness,
may affect your ability to care for your children. Discuss potential side effects of
all medications with your health care provider.
You will need to take special precautions about where you store
your medicine. You must find a place where it is easily accessible to you, but not
your children. If because of your disability, you cannot store medications well out
of your child's reach, use safety latches on cabinets and drawers. Don't store medications
in handbags or purses if you leave these in reach of children.
Childproof caps work well, but may
be too difficult for someone with decreased hand strength. If you cannot open these
caps, you will need to be especially vigilant by storing your medications in a place where
your children cannot get to them.
Keep the telephone number of your Poison
Control Center handy along with other important numbers.
HOLDING
You will want to hold your infant often. You will both benefit from this
interaction as you get to know each other. Infants are not "spoiled" by
being held. In fact, babies who are held frequently while they are content, have
been found to cry less and are comforted more easily when they are crying.
For some women with a disability, holding
an infant properly may be difficult without some type of assistive device or
pillows. Nursing pillows and slings may be helpful. If these are needed, be
sure to take these to the delivery room with you so that you can hold your baby as soon as
possible after delivery.
If your baby is crying and nothing seems to be wrong and nothing is helping, try putting him or her down on the floor on a clean blanket in a safe place. Babies can become over-stimulated and need some "down time" just as you do. You may find this especially true during family gatherings when everyone wants to hold the new baby and "help out". As a mother with a disability, you need be able to tell those who are willing to help out what you and the baby need--and don't need--without hurting anyone's feelings.
FEEDING
Being able to hold your baby comfortably will mean
that you can feed your baby a bottle or breastfeed while sitting up. While you are
feeding, the eye-to-eye contact and voice contact you make can help you bond with your
baby. Don't miss this opportunity. If at all possible, it is worth the effort to
figure out how you can feed your baby, instead of relying on others to do so. If
you need to rely on others to feed your baby, stay close by and talk to your baby during
this time.
Use caution while warming
refrigerated formula or milk. Room temperature is generally warm enough. Warm
refrigerated formula or milk in a container of warm water instead of on the stove.
If you find it preferable or faster to warm a bottle on the stove, always warm bottles with the cap and nipple OFF to
avoid causing the bottle or nipple to explode and spatter hot liquid on you and the
baby.
Do NOT use a microwave
oven to warm a baby's bottle or food, despite the speed and convenience of this method.
Nipples and plastic liners have exploded from the heat and have caused serious
burns. There are also reported problems of uneven heating, where
"hotspots" develop that can cause serious mouth, throat and esophagus burns to
the baby.
NOTE: If your disability affects your ability to feel temperature, you may be at even higher risk for injuring yourself or your baby with microwaved liquids.
In
addition, microwaving breastmilk can change the amount of protein and vitamins in the milk
and make it less nutritious for your baby. For more information on breast feeding, go to
the American Academy of Pediatrics website:
AAP - A Woman’s Guide to Breastfeeding.
SLEEPING
Don't expect your baby to sleep through the night until he or she is several months old. Be prepared for night time feedings and nights when your child has difficulty falling back to sleep. Every baby is different.
You may find it easier to have your
baby sleep in your bedroom in a cradle or a bassinet for the first few months.
Traveling back and forth between bedrooms can be taxing if a child wakes up
frequently. If you choose a cradle or bassinet, make sure it is steady and sturdy.
If your disability causes you to lose your balance, to avoid an accident with an unsteady
cradle or bassinet, you might want to set the baby's crib up in your bedroom until it is
time to move the baby into his or her own room.
Be sure to consider your physical needs when choosing a crib for your baby. For example, if you are in a wheelchair, make certain that the crib sides drop all the way down or slide to the side. Refer to the Resources section of this web page for more information.
Proponents of the "family bed" suggest that the baby sleep with you in your bed. Where your baby sleeps is a personal decision that you must make with your partner, if you have one.
Your newborn may require a night time
feeding until he or she is about three months old, but every baby is different. Some
babies sleep longer gradually until they are able to sleep the whole night. Adequate rest
for parents is essential but often difficult to get during this time. This can be a
particularly difficult time for someone who has a disability that makes her prone to
fatigue. An age-old recommendation is to "rest when your baby
rests". While this sounds good in theory, this is often difficult to do when
other family members want your attention and chores are piling up. Your rest must take
priority.
You will recover from delivery more
quickly and be more tolerant if you get the rest you need. Arrange for assistance day and
night at least during the first few weeks at home. Remember that your significant
other may be quite capable of caring for your infant, or at least be able to learn.
Don't deny your partner the chance to care for your new baby.
If you decide to give your baby a
pacifier, make sure you have plenty on hand. Do not attach it to the crib or your infant's
clothing with any type of cord for convenience. Strangulation can occur.
BATHING
During the baby's first year, if the diaper area is cleansed well during each diaper change, bathing is only necessary 2-3 times per week. More frequent bathing may dry out the baby's skin. As a mother with a disability, you will want to save your energy for the other demands in store.
Until the umbilical cord falls off, give the baby sponge baths only. Use a flat, non-slippery surface such as a bed, the floor, or counter next to the sink (use a pad or fluffy towel to pad the surface). Be sure both you and your baby are comfortable. Prepare the bathing area before starting the bath to save energy and avoid unnecessary interruption.
Once the umbilical cord falls off, you can give your baby a bath in water. Turn water heater down to 120 degree F. to avoid burns. Turn on cold water first (and off last) to avoid scalding. Water should be warm to the touch. This may present a problem for someone who has a sensory deficit that interferes with the ability to feel the water's temperature.
Consider using a thermometer to
check the water temperature. This is especially important if you have impaired
sensation. Try to keep the water between 100 and 104 degrees to avoid burns.
Use a baby tub or sink, rather than the family bathtub.
Depending on your type of disability, this may be easier on you as it makes holding the
baby easier. Fill the basin with about 2 inches of water. If you are bathing an
infant in a kitchen sink, do not run the dishwasher. The water is usually quite hot
(regardless of your water heating settings) and can come up through the drain. If
you have problems with altered sensation, you may not notice the change in temperature
quickly enough to avoid seriously burning your baby and/or yourself. If you are a mother
with uncontrolled seizures, or if you are not feeling as well as usual, you should avoid
bathing your child when you are alone.
Using a Thermometer
Taking a baby's temperature rectally can
be difficult if manual dexterity or tremors are a problem. Consider using the newer
"tape" thermometers. Ear thermometers are another consideration, however,
if manual dexterity is an issue, you may find it difficult to obtain an accurate reading.
These may not be as precise as a rectal thermometer, however, they may be safer and easier
to use in some instances.
Dressing
Mothers with mobility problems
may have difficulty carrying their infants. The use of infant carriers that strap to
the parent's body are not recommended for parents whose disabilities put them at risk
for falling. Setting up "baby stations" in different areas of the house
(upstairs, downstairs) can minimize the amount of carrying. Portable changing pads can be
placed on the floor if the parent is at risk for falling.
NEVER leave your baby unattended while on a changing table, bed, or counter. By the end of three months (maybe sooner), some babies are able to kick hard enough to roll over. Take caution and make sure you have everything you need before you begin changing or bathing your baby. NEVER leave to answer the door or the telephone. If you must leave the area, take the baby with you.
Baby clothes with front zipper or snap
openings are the easiest to get on and off. You might also consider using clothing
with velcro fasteners. If you cannot find clothing with velcro fasteners, you
might consider having some altered if the other types of openings are difficult for you to
manage.
Disposable
diapers or cloth diapers with velcro fasteners may be good alternatives for parents who
have limited use of their hands.
If your disability interferes with your ability to care for your child, get help by contacting one of the agencies listed in the Resources section of this web page.
Feeding
During this period, your child will begin to eat solid food. Your baby should always be sitting up when eating solid food, either on your lap or in an infant seat. Once your child can sit without support, usually at about 7 months or so, a highchair can be used.
[Games"
During this period, babies begin to learn about how they can have an
effect on what happens to their environment. Babies delight in dropping things,
especially from a highchair, and expect someone to pick it up and give it back to
them. While this may get frustrating, especially for a parent with a physical
disability, this activity teaches children important lessons about how they can control
their environment. To make these games easier on you, consider the following:
Your child will begin to realize that
when things are out of sight, the object continues to exist. This is referred to as
"object permanence". Again, dropping things so that they are out of sight
and having you return them will please your child. In addition to the above
suggestions, playing "peek-a-boo" with your child and hiding toys where he/she
can find them easily will also satisfy the need to test out this new discovery.
MOBILITY ISSUES
Once your baby begins to move independently, you must take extra precautions to provide a safe environment. Parents with disabilities need to evaluate their own limitations and consider the impact of the baby's ability to move around independently.
Provide your baby with a protected place to
lie, sit and play. Consider using a playpen or play yard. This will minimize the
amount of chasing you will need to do. As with all equipment, make sure that you can
work it and consider your own limitations. For example, consider playpens with mesh sides
that drop down if you cannot bend and lift.
Baby swings that stand alone on the floor
(not the type that hang in doorways) also provide a safe place for the baby. Your baby
must be able to sit up independently before you can use a swing safely.
SLEEPING
You should be able to get more rest as your baby grows. Babies between 4 and 7 months old are usually able to sleep for 8 hours a night without a feeding and take naps twice a day.
The decision whether your baby continues to sleep in your
room or moves to his or her own room should be based on your individual needs. Some
parents and "experts" have strong opinions on the issue of
"co-sleeping". Whatever sleeping arrangements you make, as a woman with a
disability, you should keep in mind that you need to sleep well if you are to be
well-rested. Don't allow guilt or others' opinions on the matter interfere or complicate
your decisions. Refer to the RESOURCES section for more
information.
By the time your baby is 6 months old, some experts recommend that your baby be sleeping in his or her own crib and own room. The bassinet or cradle will likely be too small at this point and interfere with your baby's ability to move around without waking. Especially as a parent with a disability, it may seem easier to keep the baby in your room with you as long as possible. However, the older your child gets, some argue that it becomes more difficult for your child to adjust to sleeping in his/her own room. It may be easier for you and your baby to make the adjustment now.
Naps
Allow your baby to sleep as long as he/she likes, unless the later nap appears to be interfering with bedtime or his/her ability to sleep through the night. If this is the case, it is recommended that you wake the baby up from the later nap. If, however, your baby is not feeling well, he/she may need some extra sleep. Use and trust your own judgement.
Night time
All babies will wake up some nights. If you have decided to have your baby sleep in his or her own room, it is important for you to recognize that your baby needs to learn how to comfort himself or herself and return to sleep---without you.
-Remember: babies learn
very quickly to expect certain responses from you--and may
not go to sleep without them!
MOBILITY
As your baby becomes increasingly mobile, safety issues become a primary concern. If you haven’t done so already, CHILDPROOF your home. The fewer areas that are "off limits", the more opportunity your child will have to make discoveries without your assistance.
Arrange safe areas for your child to explore. For example, fill a low kitchen
cabinet with safe objects, such as pots and pans and unbreakable utensils (no sharp or
pointed edges) and let your child discover the area.
By providing safe and interesting areas to explore,
your child can satisfy his/her need for freedom. This will keep your baby busy, safe and
promote his/her emerging self-esteem.
Baby gates can be very helpful for keeping a
baby in a "baby-proofed" area or limit access to dangerous areas, such as
stairways. If your disability interferes with your ability to quickly get to your
child to prevent an accident, it is essential that you keep your baby in safe, confined,
yet entertaining areas.
Refrain from putting your child in a baby walker. Baby walkers can be very dangerous and experts do not recommend their use. Children in walkers are more likely to fall down stairs and may gain access to areas that they would not have otherwise.
Children at this age will begin to pull up on
objects when trying to stand up. If you use a wheelchair in the home, make certain that an
unoccupied wheelchair is locked, so that the baby will not fall if she pulls up on it to
stand. Use caution with motorized wheelchairs. Walkers and canes may topple over. Keep
these out of your baby's reach.
FEEDING
As your child begins to learn to eat independently, mealtime will
become increasingly messy. If fatigue is a symptom related to your disability, try to
avoid the tendency to continue to feed your child to make mealtime more efficient and
minimize the amount of clean-up afterwards. It is important that you allow your baby to
learn to eat independently at this point. Allow your baby to try to use a spoon. You can
speed things up by alternating one spoonful from you, then one from his/ her own spoon.
It is important for you, as well as your baby, to be well nourished. Some simple arrangements can make all the difference and allow you to enjoy a calm, nourishing meal.
Consider the following
suggestions:
Feed the baby just
before the family sits down to dinner. During your dinner, keep your baby occupied in a
high chair with finger foods such as small, soft pieces of fruit such as banana or very
ripe pear, well-cooked pasta, cut-up small pieces of chicken and cereals.
As you are planning meals, consider foods that are conducive to sharing with your baby. As your baby grows, he or she will be able to handle most foods that the family eats, but for now, exercise caution.
Remember that your child is likely to swallow without chewing, so AVOID any hard, round foods such as large pieces of raw carrot, nuts, popcorn, celery, hotdogs, hard candy. Spoonfuls of peanut butter should also be avoided.
Try to keep the area underneath the highchair
protected with a washable cover to minimize the energy you use cleaning up.
SLEEPING
Your baby may continue with 2 naps daily and sleep as much as 12 hours per night without needing a middle-of-the-night feeding. However, children between eight and twelve months of age may begin to experience some separation anxiety, which can result in difficult bedtimes and waking up during the night. Some suggestions to help you deal with this period follow:
Be consistent. Keep an established bedtime
routine and experiment with strategies that help your baby fall asleep. Some children
become attached to stuffed animals and blankets. Some prefer to sleep with the door open,
so that they can hear you as they fall asleep.
MOBILITY
Children at this age can climb out of cribs if the mattress is not set at the lowest possible setting. Make sure you can easily adjust the sides of the crib so that you can lower it to make getting your baby out easier. You may need to find a crib adapted for you particular needs. Check the RESOURCES section of our website for more information.
If your child is showing signs of being able to climb out of bed, despite
the mattress being set at the lowest setting, move the child to a low bed with safety
rails.
Some children have a greater tendency to climb than others. If your baby seems to want to climb, you need to be aware of this tendency and make sure that the child's environment is safe.
FEEDING
Despite the obvious increase in activity, toddlers actually don’t
require as much food as one would expect. They only need to take in about 1000 calories a
day. Some children will eat a large breakfast, then little else for the rest of the day.
Avoid turning mealtime into a fight. Offer your child healthy snacks throughout the day,
in addition to meals. If your child doesn’t eat a meal, offer it later, but DO NOT
allow him or her to fill up on sweets after rejecting a meal.
Your child will probably be able to eat most of the foods that you serve
the rest of the family, provided it is cut up into small pieces and it is not too hard to
chew and swallow. It is not necessary to make special meals for your toddler, even if
he/she is a picky eater. Avoid offering special meals in an effort to get your child to
eat more. He or she will come to expect this special attention (and probably won’t
eat much anyway).
If you
haven’t taken the time to establish good eating habits for yourself, this is a good
time to do so. Especially as a parent with a disability, you may be more prone to eating
fast foods because of their convenience. Start teaching your child good eating habits that
will last a lifetime. Refer to our webpage on HEALTHY
NUTRITION for more information and resources on good nutrition.
SLEEPING
Toddlers will delay bedtime for as long as
you will let them, or until they collapse from exhaustion (which may sometimes appear to
be an easier alternative than putting them to bed).
Establish a bedtime routine and a normal
bedtime, as discussed earlier. You need rest and time for yourself and you should not feel
guilty about putting a tired child to bed, despite his/her protests.
Toddlers, unfortunately, will wake during the night, for any number of reasons. As discussed earlier, take care of any real needs, reassure them, but do not take them out of bed or bring them in bed with you if you want them to sleep in their own bed. Don’t get angry. Show compassion, but be firm. You will both benefit in the long run if you are consistent with your approach.
Toilet Training
Most experts agree that toilet training generally
becomes easier and is accomplished more quickly when your child is older. While toilet
training is possible at this age, it is not always desirable. You may be placing
unnecessary stress on you and your toddler.
You can begin discussing toilet training and familiarize your child
with the process by keeping a potty chair handy (if you are going to use one). But avoid
pressuring your child into potty training. This topic is discussed in more detail in the
next section.
Play
Outside play
is important for toddlers. Sunshine, fresh air and a change of scenery are healthy for
your child. If possible, fence in an area so that he/she can play freely outside.
If your disability prevents you from spending time
in the sun or cold, consider other arrangements, such as play groups, to enable your child
to get outside at least daily, weather permitting.
Safety
Toddlers are fast! You need to be especially careful whenever you are near traffic. Your child must learn that traffic safety rules are important. If you are able to push a stroller, this will probably be the easiest way for you and your child to get around outside, in shopping malls, etc., but use caution.
Avoid hanging heavy bags on the handles of the stroller. The
excess weight can cause the stroller to fall backwards when your child is in it.
Look for a stroller with storage on the bottom, especially if you have a disability that
affects use of your arms.
If a stroller is not an option, you might consider placing your child in a safety harness, designed specifically for children. These devices allow your child a lot of freedom, but give you the ultimate control as to where and how far he or she goes.
As a parent with a disability, teaching children to cross the
street at a light and not from between parked cars can be challenging, since you may not
always have the option to set a good example. For example, if you must use an incline of a
driveway or a curb cut to cross the street, this may not be safe for a child, if cars are
parked at the curb. You must make the safety rules clear to your child and explain why you
cannot follow them every time. However, remember that you are your child's most
influential role model. Be sure to set a good example for your child whenever possible.
At some point, your child will protest
against using a car seat. This is another non-negotiable rule.
Make this a family rule: The child is in the seat or the car doesn't move!
CLOTHING
Continue to dress your child in clothes that go on and come off easily. This will increase his independence with dressing and make it easier for you when you are dressing your child.
Consider shoes or sneakers with Velcro fasteners. This is especially helpful if you have problems with manual dexterity, tremor or impaired vision. Your child will learn quickly how to put shoes on independently.
If you are visually-impaired, consider dressing your child in bright-colored clothes or attaching bells to their shoes to make it easier for you to locate your child.
[Preschool (2-3 years)]
As your child reaches the age of 2, physical growth will slow, but you will notice significant intellectual, social and emotional changes. At this age, a parent’s state of mind can have a significant impact on a child. If a parent is depressed, a child can also become depressed-even at this young age. If you are feeling overwhelmed or depressed, seek help. Parenting is a challenging role, although rewarding. Like all parents, those with a disability face great demands and should seek emotional help, if needed.
Feeding
By this time, your toddler will be eating the same foods as the rest of the family. Your child should be eating three meals a day and one or two healthy snacks, such as fruit, milk, and crackers. If given the opportunity, your child will likely master using a spoon and drinking from a cup by around 2 and using a fork by age 3.
While your child can eat properly, he/she may rush through a meal to get on with playing or other activities. It is recommended that you avoid the following foods to avoid choking.
Sleeping
At this age, children often take one nap,
around lunchtime. This is not a hard and fast rule, however. Some need more than one nap,
while others require no nap at all. Unless your child becomes irritable and overtired from
lack of sleep, it is not necessary to force him to nap. This may be problematic for
someone whose disability causes fatigue.
If you have come to count on your child napping regularly so that you can
rest, you may need to make arrangements for someone to come in for a few hours, so that
you can rest.
If this is not an option, try to establish a regular "rest time" for you and your child. Although too much TV watching is not recommended, there are educational programs on your local PBS channel that can keep your child safely occupied, while you rest in the same room.
Your child will probably look for consistency in his/her bedtime routine, and may still
resist going to sleep. The same rules apply. Be gentle and reassuring, and consistent.
Mobility
Children at this age develop motor skills on their own. There is no need for you to be upset or distressed if you cannot always physically participate.
REMEMBER: The areas of self-control and
judgement are much less developed than your child’s motor skills.
Social aspects
Children at this age are selfish and self-centered by nature. Interaction with other children is necessary for them to learn how to be social beings.
Whenever possible, arrange for small "play
groups" with other children.
Toilet training
Your child will probably begin to show signs
of readiness for toilet training sometime during this period. Remember, however, your
child must WANT to take this step for it to be successful. Look for the following signs of
readiness to begin training:
Refer to your baby manual or talk with your pediatrician as to how to most effectively go about toilet training. As a mother with a disability, you will need to consider some of the following issues:
Will you use a potty chair or training seat (which attaches to the toilet)?
If space is an issue, especially if you need to fit a wheelchair or walker in the bathroom as well, a training seat may be a better option. However, keep in mind that you will need to take the seat off when you need to use the bathroom. This might be a problem if you have limited use of your arms or if you have urinary urgency. In these instances, a potty chair may be the better option for your child.
If you have more than one bathroom, consider equipping one on each floor for your toddler. The time between when a toddler decides it is time to go to the bathroom and actually going is usually short. If climbing stairs is difficult or not possible for you, an equipped bathroom on each level will save you energy and your toddler will have more success with his attempts to use the potty.
Remember, too, that the potty chair does not have to be in the bathroom, although, like you, your child will want privacy.
You will need to make sure your child’s bottom is clean
after using the toilet. If you have problems with manual dexterity, after your child has a
bowel movement, consider using a moistened towelette to make sure that the area is
well-cleansed.
[PRESCHOOL /DAYCARE]
With the increase in the number of families where both parents work, day care centers and preschools are becoming more widely available. As a parent with a disability, whether or not you work outside the home, you might want to consider enrolling your child into a preschool or day care center. The benefits of this include:
When pangs of guilt or sadness strike as you send your child to preschool or daycare, remember that these periodic separations will help your child become more independent, while allowing you to tend to your own needs.
When choosing a center, be sure to consider your
own needs as well as your child’s. Parents with a disability report difficulty
finding centers that are accessible to them. Visit the school for various programs and
meetings with the staff, to be sure that you can access all areas of the school. Be aware
that while you might be able to get to the offices, you may not be able to get to the
childcare areas on different floors. Give the accessibility issue some serious
consideration as you choose a site. You don’t want to risk missing the various school
"shows" and events because you cannot get to the area in which these events take
place.
Transportation presents a problem for some parents with a
disability. If you are unable to drive your preschooler, try to find a center that offers
transportation or is willing to assist you with arranging for a carpool. Many sites
encourage carpooling to limit the number of cars coming to pick up children at one time.
All nursery/preschools should offer a child a
safe and stimulating environment that is supervised by capable, supportive and caring
adults. This is not a given, so consider the following when choosing a preschool or day
care center:
Discipline
There are many sources of guidance as to how
to discipline your children. Whatever your philosophy of discipline is, don’t allow
your disability to interfere with communicating your specific expectations to your child.
Consistency is key to effective discipline. Children thrive in secure and stable
environments. They count on you to consistently apply the rules and look to you for limit
setting. They need help with establishing boundaries and will push those boundaries to
elicit your response. Be consistent in those responses now and in the future. You will
both benefit.
Remember to reward good behavior! Don’t let a well-behaved child feel taken
for granted, especially in contrast to a misbehaving child. Pay as much attention, if not
more, to a child who is behaving well.
[PRESCHOOL-KINDERGARTEN (3 to 6 years)]
Adjustment To Disability
Children at this age may be increasingly more aware and inquisitive about your
disability. Answer their questions simply and directly. Make sure you know what they are
asking you. Avoid too much detail as children this age can only comprehend so much before
they become confused and overwhelmed. Remember to use words they understand when you are
trying to explain your disorder.
If your condition is fairly new or your symptoms have gotten worse lately, your child will need a lot of reassurance. Children at this age are still rather self-centered and, may believe that their actions caused your disability. They may also believe that it will go away if they behave a certain way. Reassure your child that your disorder is not his or her fault.
Allow and encourage your child to express feelings
about your disability through role-playing and drawing.
If your
child is showing signs of excessive aggressiveness, guilt, nightmares, fear of being
abandoned or various ills, professional counseling might be helpful. Remember, however,
that most children demonstrate or experience some or all of these things as a part of
normal growth and development. They need only be addressed if they interfere with normal
activity. For example, don’t assume that because your child is having nightmares that
it is because of your disability. If you are concerned, however, discuss the matter with
your pediatrician.
Discipline
As your child grows, discipline will become more
challenging, especially once he or she knows that running away from you is an option.
Again, keep the boundaries and expectations clear and be consistent. Your child still
looks to you for guidance, especially as he/she is exposed to new people and
situations.
Social Skills
As children become less self-absorbed,
they will begin to play with other children as they learn to share. Children will
benefit from a social life that includes friends that they see routinely. Preschool and
playgrounds are great places for children at this age to establish relationships with
friends.
Encourage your child to invite friends to your home and help with these
arrangements. It is very important for your child to establish as sense of self-pride and
this is an excellent way to help. This does not mean that your house has to be full of
expensive toys. It just needs to be warm and welcoming.
As a parent with a disability, it is important for you to allow your child's friends to come into your home. Children at this age have a lot of pride in their parents and they will want their friends to meet you. In addition, if your child's friends have had little exposure to persons with a disability, it will be especially helpful for them to see you as a vital, active and loving parent.
Special considerations:
Nutrition
At this point, children are capable
of participating in a family meal and feeding themselves. Experts caution that it is
important to establish healthy eating habits at this time. Avoid encouraging your child to
overeat. This can lead to continued overeating and obesity later in life. You should also
monitor the amount of snacks your child eats. The following guidelines may be helpful in
your efforts to teach your child healthy eating habits.
Toilet training
Your child will need to be independent with toileting by the age of 5 in preparation for school. You can help your child master this milestone by continuing to dress him/her in clothes that are easily removed. For example, clothes with elastic waistbands as opposed to zipper and fly fronts. You will also need to teach your child proper hygiene.
When going out, encourage your child to use the bathroom before leaving home. This can be challenging, especially when he/she doesn't feel the urge to use the bathroom. It is essential that your child learn the importance of using the bathroom when it is most convenient.
If your disability involves a physical impairment,
you know that finding public bathroom facilities that easily accommodate your needs can be
challenging. Since you will need to continue to accompany your child to public restrooms,
it is very important that your teach your child ways to minimize the use of public
bathrooms. Obviously, this cannot always be avoided, but what you can do is help your
child prevent the need for "urgent" visits to the toilet. You will need ample
time to be able to assist your child, so planning bathroom stops is essential to avoiding
accidents.
You might consider keeping a change of clothes handy, as you did when your child was younger. Accidents do happen!
Sleeping
Your preschooler will generally require 10-12 hours of sleep per night.
A nighttime routine helps your child prepare for sleep and makes
it easier on both of you. Many parents find that reading a story is the best way to
prepare a preschooler for sleep.
Your preschooler will probably sleep throughout the night, but may rouse several times each night, orient himself/herself to where he/she is (and where you are) and then fall back to sleep. He or she may, however, call out for you during this time. If your child is sleeping in his or her own room, wait a few minutes before going to your child's room (unless, of course, you suspect the child is ill or in danger). If it is necessary to go in, reassure him/her that you are nearby, make sure your child is comfortable, and leave the room. Your consistent response is important.
Traveling
Traveling with a pre-school age child can be
challenging. Children at this age become restless when they are confined to a car
seat.
Remember: Even for the shortest trips, your child must remain in his car seat or booster seat.
If he protests, do not start the car until he is properly seated. If during the trip he manages to get out of the restraint, pull over until he is fastened securely.
The following suggestions can help make car trips more pleasurable.
As a mother with a disability, you may need to take your child with you to visits to your various health care providers. Providing your child with these items may help make the wait-time in the office more bearable for all.
This age is also referred to as "middle childhood". As a mother with a disability, you will find that your child's physical needs are easier to meet.
Children at this age should be able to
dress themselves independently. School-age children are also capable of simple meal
preparation. Consider ways to help your child to be independent in these areas.
Arrange drawers and closets so that your child can get
to and put away his/her own clothes.
Keep healthy snacks and easy to prepare foods within easy
reach.
Your child is also able to take on more responsibility
around the house. Simple chores such as dusting, vacuuming, setting the table and
doing dishes are not too difficult. If possible, have your child select the tasks to
be done. Children are often proud of doing their chores and will develop an increased
sense of responsibility and learn skills that will be important later in life. It is
important, however, to avoid assigning too many chores. Your child might come to
resent you and your disability for expecting too much.
Social Development
A
child's world expands at this age and includes school and friends, which become extremely
important to a child of this age. Support your child's attempts to be socially
active. Encourage invitations to friends to come to your home. If you don't
know the new friend very well, arrange for a short visit at first so that you can observe
how your child and the new friend get along. If your child's friend is not familiar
with your disability, it may be helpful to give a brief explanation and reassurance to
help him or her feel more comfortable.
Get to know the parents of your child's friends. Allow your child to accept invitations to go to another person's home, provided you are confident this is a safe environment.
Parents who fear being alone or losing their child's attention may give their children chores and busywork to do around the house as a reason to keep the child at home. If you want your child's company, plan fun activities for both of you. Don't use your parental control as a means to keep your child at home with you. This is important for all parents, not only for those with a disability.
At the same time, as a mother with a disability, you may need to give your child more responsibilities than his or her friends' parents do, to keep the household running smoothly. Provided the tasks are appropriate for your child's age and ability, you should not feel guilty. Don't overburden yourself out of concerns about overburdening your child. Focus instead on keeping these tasks fairly distributed among all family members. Explain why you are sharing the home responsibilities and discuss what it means to be part of a family. Be sure to reward your child appropriately.
Remember that this is the time when your child begins to truly develop his or her social skills. It is important that you allow that development to occur, while balancing his or her responsibilities at home.
Adjustment to Disability
It is important that a mother with a
disability speak with her children about her disorder and the way it may affect family
life. By talking to your children openly about your disorder, you can begin to
understand their fears and determine how much they truly understand.
If you are newly diagnosed, you should talk honestly and openly
with your children about your disorder. Before doing so, however, make sure that you
fully understand what is happening to you. Timing is important. It is not
necessary or even advisable to talk to your children about your disorder immediately after
you are diagnosed. You may want to wait and speak to your children about your diagnosis
when you are calm and have had time to absorb it yourself.
Reassure your children that every new symptom or health problem does not mean that another disabling condition is occurring.
Your children will need to see that you are confident in
your ability to handle the challenges and uncertainty of your future. This does not
mean, however, that you should not be open and honest about your feelings with your
children. They will benefit from understanding that you will sometimes feel scared,
overwhelmed and even angry at times. This will help them understand you better and
teach them appropriate ways to express both positive and negative feelings.
Listed below is some information about children in this age group that might help you talk to your children about your disorder and help you understand what they might be feeling:
If you and your child are having difficulties that you cannot work through on your own, seek professional guidance and counseling early on. Once the lines of communication are opened, it is likely that both of your lives will be better. Please refer to our REFERENCES section for specific references on the topic of children with parents with a disability.
Transportation
Many mothers with a disability report that the lack of dependable transportation affects their ability to take part in everyday activities of their children. If transportation is a concern:
A
teenager, or adolescent, experiences a great deal of social and physical changes during
this period. During this time, a teenager must develop his or her own
identity. This helps the child eventually separate from his or her
parents. Your child will develop this identity through increased contact with
friends. A teenager will begin to depend on his or her friends for support and
positive feedback. This need for increased independence creates a challenge for all
families because of the struggle to determine just how much freedom is appropriate.
As a mother with a disability, this
time can be especially challenging because you may need more help at home than a mother
without a disability in order to keep your household running smoothly. You will need
to establish a balance between how much your teenager needs to do at home and his/her need
to be able to pursue activities outside of the home. Remember that most teenagers have (or
should have) some responsibilities at home for which they are responsible. Don't
feel guilty about giving your teenager chores that are appropriate for their age and
abilities.
Like all mothers, you may begin to feel uncomfortable with
your child's gradual separation from you. You may begin to feel uncomfortable with your
child's independence as your relationship changes. These feelings are not
uncommon. Don't feel guilty if you have these feelings. Instead, be aware that
these feelings can interfere with your relationship with your child if they are not
handled well. You should try to encourage your child's increasing independence, while
controlling behavior by clear communication of the rules. Communication and emotional
attachment is still essential for your teenager. Try to understand your teenager's
viewpoint and needs at this time. Unlike a younger child, your teenager needs more
detailed explanations about your disorder and how much his or her help is needed.
Give the following questions some thought:
Discipline
Along with a teenager's increasing independence, the matter of discipline becomes more complicated. Some mothers with disabilities fear that they will not be able to control a teenager. As a mother with a disability, how you handle matters of discipline with your child may depend on how long you have had your disorder. On a positive note, mothers with a long-standing disorder will have already developed their method of discipline. Mothers who are unable to discipline a child at an early age by physically removing the child from a situation, learn early to discipline a child through approval and disapproval. As your child matures, of course, the tried and true methods will need to be updated to address the current issues, but a parent who has been in control will likely remain in control.
A mother dealing with a new disorder, may experience significant fear and frustration surrounding the discipline of a teenage son or daughter. However, some experts say that children who perceive their parents as strong emotionally, continue to view them as strong even when their bodies become weak.
Your ability to discipline effectively, or how you want to discipline is affected by your emotional state. A mother who is in pain or very tired, may respond to a situation more harshly that she really intends. When this happens, talk with your child after emotions have settled down. Explain your feelings, listen to your child's position and feelings, reinforce your expectations of appropriate behavior, and move on. Don't dwell on what is supposed to be a resolved issue between you and your child.
Seek professional help early on if your relationship with your child is severely strained or if your child is becoming or has become a discipline problem.
Mothers with disabilities should be comforted by the fact that love itself is a strong factor in discipline that may help a child of any age respond positively.
M. Cassatt
Remember to show affection. A mother with a disability may not show physical affection often because it cannot always occur spontaneously. If you need to plan a hug, do so, even if you have to ask for it. A little hug goes a long way.