What to Expect the Toddler Years (253 page)
Read What to Expect the Toddler Years Online
Authors: Heidi Murkoff
HELPING THE HEALTHY SIBLING
How does growing up in a household with a special-needs sibling affect healthy children? One study of college-age students who had grown up with a mentally retarded sibling found that about half felt they had been harmed and about half felt they had benefitted. Those whose perceptions of their childhood were negative had been ashamed of their sibling and felt they had been neglected by their parents, whom they viewed as having been preoccupied with the care of the special-needs sibling. These healthy siblings also felt overburdened with responsibilities and believed their own opportunities for recreation and growth were unduly restricted. The healthy siblings who felt they had benefitted admired their parents’ devotion to their special-needs sibling and felt that this child had brought their family closer; instead of feeling short-changed, they felt lucky. They were, on average, more compassionate and tolerant of others, more understanding and sensitive, and more appreciative of their own good health and intelligence than were their peers in families without special-needs children.
Clearly, although being a healthy sibling in a household with a special-needs child is never easy, it can be an enriching, character-building experience. To improve the odds that your healthy children will benefit from the experience:
Involve them.
Explain to them in language they can understand just what their sibling’s situation is and how the family can work together to take care of him or her and each other. Find small tasks appropriate to their ages. For example, a toddler can dance, sing, and make faces to entertain an asthmatic sibling during nebulizer therapy. A school-age child can share a book or play board games with a bedridden sibling. A teenager can baby-sit occasionally (but don’t require this on a regular basis) and perhaps even help with physical therapy or other treatment, if he or she likes.
Reassure them.
For older children, make it clear that the primary responsibility for caring for their sibling will fall on you, not on them. When the healthy sibling is a toddler, just say, “Yes, Ryan has a problem, but it’s not your fault. You didn’t do it.” In fact, all your children (the special-needs one included) need to be reassured that they are not responsible. Your healthy children may also need reassurance that the illness or disability is not contagious—that you can’t catch it the way you catch a cold, and that if they do come down with a cold or flu, it won’t make them sick like their sibling.
Make time for them
.
Though much of your time may be taken up with caring for your special-needs child, your well children need attention, too. Stretch your time as far as you can to make sure that each of your children gets some “one-on-one” with a parent every day. Do whatever works for your family. One option: Stagger bedtimes so that each child can have a chance to talk over his or her day without vying for attention. Perhaps, too, you can plan a special outing once a week for each child—even if it means asking a relative or friend for coverage or hiring someone to stay with your special-needs child. If periods of hospitalization are necessary, be sure that your well children get to visit and that you take some time away from the hospital to be with them.
Be a good role model
.
Your attitude toward your special-needs child is almost certain to rub off on your other children, so make sure it’s a positive one. Get professional help to learn how to deal with any negative feelings—embarrassment, despair, guilt, or anger—that you may have.
Don’t scapegoat
.
Often it’s easier (and less guilt provoking) to take your anger, frustration, and exhaustion out on your healthy children than on your special-needs child (“I have enough trouble—I don’t need any from you!”). But kid gloving your special-needs child and using your well children as scapegoats isn’t fair, and can lead to resentment and hostility. If you find yourself frequently taking your feelings out on your family, get some help.
Be understanding.
Healthy siblings often have mixed feelings: “I am worried (or sad or scared) about my sister”/ “I wish I didn’t have a sister—my parents have no time for me.” Such ambivalence is normal (even parents are susceptible to it), and you need to make sure your children know that it is. Encourage them to share their feelings by picking up on non-verbal clues (a look of sorrow, or anger, or concern) and asking about them (“Do you feel sad? . . . angry? . . . worried?”).
Some well children, feeling the stress, develop the same “symptoms” as their special-needs sibling (of course, never assume the symptoms are sympathetic until you’ve checked with the doctor). And some may intentionally try to mimic behavior (like a cough, a limp, or a twitch, for example). Most often this is an attempt to either attract attention (after all, that’s how the sibling gets it) or to somehow feel at one with the sibling (“I want to know how Geena feels”). Provide some extra attention, lend an understanding ear, and the mimicry is almost certain to disappear. If it upsets your special-needs child, explain that to the sibling and suggest that if he or she wants to continue the imitation, to do so in private.
Watch for warning signs.
Children who have trouble coping with the stresses generated by having a special-needs sibling may become depressed and withdrawn, or start acting out (having frequent tantrums, for instance, or resisting bedtime). Try to devote some extra time and attention when such signs appear. If that doesn’t help, discuss the problem with your children’s doctor; individual or family counseling may be helpful.
Don’t stoke up the pressure.
Raising expectations for your healthy children or expecting them to be perfect in order to compensate for their sibling puts an unfair burden on them. Encourage all your children to be the best they can be, but never push, bully, or demand that they be more.
Provide outside support.
Arranging for your well children to attend a support group, in which they can share feelings and thoughts with other children in similar situations, can be extremely valuable. Some children’s hospitals run special groups or classes for siblings of children with particular disabilities or illnesses. If you’re unable to locate a group (check with your child’s doctor, the hospital, local adult support groups), consider starting one.
The lower respiratory tract (bronchial tubes and lungs): allergic bronchitis, asthma (see page 710).
The digestive tract: gassiness; watery, sometimes bloody, diarrhea; vomiting.
The skin: atopic dermatitis, including eczema (see page 472); urticaria, or hives (a blotchy, itchy, raised red rash); and angioedema (facial swelling, particularly
around the eyes and mouth, which is not as itchy as hives, but can be a sign of serious allergy; see page 707).
The eyes: itching, watering, redness, and other signs of eye inflammation.
General: irritability.
How common is it?
Estimates vary because of different diagnostic criteria, but it is likely that from 10% to 20% of children have or will have allergies at some time in their lives.
Who is susceptible?
Most often, those with a family history of allergy. The risk is greatest (about 80%) when both parents have allergies. The allergy doesn’t develop, however, unless and until the child is exposed to the potential allergen.
What causes it?
The release of histamine and other substances by the immune system in response to exposure to an allergen (a substance to which the individual is hypersensitive). The tendency toward allergy runs in families. The way allergies are expressed is often different in different family members—one may have hay fever, another asthma; a third may break out in hives on eating strawberries. An allergen can enter a child’s system via inhalation (of pollen or animal dander, for example), ingestion (of nuts, milk, wheat, egg whites, soy products, or other food allergens), injection (penicillin shot or bee sting), or skin contact (nickel jewelry, wool garments).
Skin reactions such as urticaria and angioedema as well as anaphylaxis can also becaused by exposure to heat, cold, pressure, vibration, light, water, exercise, and infectious organisms.
Treatment/management/prevention.
The first step in treating your child’s allergy is to get an accurate diagnosis. If your child has a similar reaction every time he or she is exposed to a particular food or other allergen (always throws up after eating fish sticks, for example), check with the doctor. Many suspected food allergies, however, aren’t allergies at all and, especially in young children, a clear diagnosis may be difficult. Skin tests are often unreliable in young children (though a negative test is more likely to be accurate than a positive); in-vitro tests, such as RAST (
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est), tend to be complicated and expensive. In some cases, a challenge test, in which the suspected food is administered to the child in the doctor’s office (where emergency treatment is available if necessary) can be used to determine if a child is allergic to a particular food. Or the doctor may recommend eliminating a suspected allergen from the child’s diet for a few weeks to see if symptoms clear. Alternatively, several items may be eliminated and, once symptoms are gone, restored one at a time to determine the culprit. Such a test can be helpful, but don’t attempt one without medical supervision.