What to Expect the Toddler Years (252 page)

Sibling support.
Siblings stand to suffer when so much attention is necessarily paid to the special-needs child. See page 704 for tips on helping siblings cope.

Coping strategies.
With help from professionals, support groups, or others who’ve been through it before you, learn how to cope with your child’s special needs, how to meet your needs and the needs of other family members, how to organize your time, and how to forgive yourself for not being perfect (remember, no one is).

Learning stress reduction techniques (see page 173) can also be valuable for everyone in the family, including your special-needs child. It can help to reduce
stress that may be aggravating your child’s condition as well as stress that results from it.

A thick skin.
Don’t let unfeeling, thoughtless remarks from friends or strangers get you down; don’t let their ignorance or intolerance hurt your child. Be as open and matter-of-fact as you can about your child’s illness or condition so that you don’t give your child (or others) the impression that you’re embarrassed or disturbed by it. Make it clear to relatives and friends that you consider your child a person first—that the illness or disability is not the sum total of his or her being—and encourage them to think the same way.

Also encourage your local public schools to develop a program to educate children about people with disabilities—this will make it easier for your child and other special-needs children as they begin to socialize, especially if they will be “mainstreamed” into the system. When your child does attend a program where he or she will stand out as being different, it may help to introduce your child and the condition with a DVD (shown by you or a caseworker) before your child comes on the scene.

A plan for the future.
You care for your child as no one else could. But though no one likes to think about it, it’s important to prepare for the possibility of something happening to you—and your child being left without that care. Most experts recommend a “special-needs trust” rather than an ordinary will. An inheritance can negate SSI disability and Medicaid payments, but the special-needs trust can provide money for special needs while the support payments continue. See a lawyer who specializes in such trusts for advice. One decision you will have to make yourself is who to choose as trustee. A family member you can trust to do what’s best for your child is usually an ideal choice; if a lot of money is involved, it may be helpful to choose a corporate co-trustee, who would make financial decisions, but not those related to your child’s welfare. Your lawyer can help you find such a person.

Acceptance.
Most disabilities and chronic conditions are not “curable,” though many can be controlled or even greatly improved. You will need to accept the realities of your child’s problem and what he or she will and will not be able to do. If your child’s condition was only recently diagnosed, you may have to struggle with anger, grief, and guilt before you reach acceptance. You may also focus too hard at first on your child’s weaknesses and too little on his or her strengths, but by working at it, you should be able to turn that around. The more accepting you are of your child, the more self-accepting he or she will grow up to be.

Encouragement.
Accepting your child’s limitations doesn’t mean that you shouldn’t make every effort to help your child reach his or her maximum potential. Encourage intellectual and physical growth (to the extent this is possible) and the development of skills of all kinds (including social skills).

Hope.
Nor does accepting your child’s condition mean that you should abandon hope. For the vast majority of special-needs children, love, support, and appropriate therapy can improve the prognosis, sometimes dramatically. For many, new research tomorrow, or the day after, or the day after that, may even bring the miracle for which parents pray. Some research suggests that hope itself may also influence how well a child (or anyone with a disability or a chronic illness) does in life. So do keep hoping, and encourage your child to hope, too.

What is it?
AIDS is an illness characterized by the breakdown of the body’s natural immunity against disease. A child infected with HIV-1 (see “What causes it?” next column) may have no apparent symptoms for months or even years; during this time the infection can be diagnosed by blood testing. Not until characteristic symptoms develop is the child considered to have AIDS. Symptoms vary, but may include: fever and night sweats, shaking chills that last for weeks, fatigue, rapid weight loss or inability to gain weight, swollen lymph glands in the neck and underarm areas and/or, rarely, enlarged parotid (salivary) glands, recurrent or chronic diarrhea, white spots or blemishes in the mouth (from persistent thrush, a yeast infection), developmental lags, recurrent bacterial infections, and liver and/or kidney disorders. Patterns of illness are different in children than in adults and can vary, too, from child to child. In some children, AIDS appears to take the form of a chronic disease. For some of the possible manifestations and complications of AIDS, see “Related problems” (next column).

How common is it?
Very rare in children, particularly those who fit a low-risk profile.

Who is susceptible?
Mostly, children born to HIV-positive mothers. Though all of these children test positive for HIV as newborns, only 12% to 40% are actually infected with HIV; the most commonly used tests are not accurate until all of the mother’s antibodies have cleared the child’s body, usually between fifteen and eighteen months. Newer tests appear to provide an accurate diagnosis at four months. The chance of a child turning out to be infected appears to be lowered significantly when the HIV-positive mother is treated prenatally with the drug AZT. Hemophiliacs and other children who receive blood transfusions have in the past been at high risk for infection; today, thanks to improvements in blood screening, the risk that a child will receive blood that contains HIV-1 is minuscule.

What causes it?
The human immunodeficiency virus (HIV-1) is transmitted via body fluids (blood, semen, or vaginal secretions, but
not
saliva, sweat, or tears). Most often transmission takes place during sexual intercourse, both homosexual and heterosexual, or when intravenous drug needles are shared. HIV can also be transmitted from mother to child during pregnancy, delivery, or postpartum (during breastfeeding). It is
not
airborne or transmitted by the bite of a mosquito or any other insect, or via household pets or other domestic animals. A child can’t get the AIDS virus through casual contact or by playing with an HIV-infected child.

At this point, it appears that not every child who contracts HIV becomes sick with AIDS, though it’s not clear why.

Related problems.
Pneumocystis carinii
pneumonia (PCP); pneumococcal meningitis; such rare cancers as leiomyosarcoma (Kaposi’s sarcoma, common in adults with AIDS, is extremely rare in children), as well as certain types of lymphomas; parasitic infections (such as toxoplasmosis); cardiac abnormalities (especially in children with brain involvement or Epstein-Barr virus);
movement disorders and developmental delays; wasting syndrome and failure to thrive; liver disease; kidney disease; anemia; thrombocytopenia (a reduction in blood platelets, which are needed for clotting); dermatitis; tuberculosis.

Treatment/management.
A multidisciplinary approach is needed. Young children may now be treated with the drug AZT, which though not a cure can sometimes prolong life. Other antiviral drugs are presently being studied for use against AIDS, but none has yet been shown to be effective. Steroids, however, are sometimes useful in treating PCP. Nutrition and pain management are important, as are prevention and the aggressive treatment of any infection. The administration of intravenous immunoglobulin (IVIg) seems to reduce the number of infections in young AIDS patients.

Though a child with AIDS poses no threat to others in a well-run day-care or preschool setting, an HIV-positive child in such a group setting might be exposed to infections that could, because of a weakened immune system, become serious or even fatal. Such placements should be made with caution.

Prevention.
In children: Treatment of pregnant women who are HIV-positive. Avoidance of contaminated blood or blood components for transfusion (blood that is self-donated or donated by family members who are known to be HIV-negative is usually safest). Good hygienic practices in homes or child-care facilities with infected children (the virus can be eradicated by chlorine bleach and some other household disinfectants). Cleaning up after an infected child who has received a cut requires meticulous cleansing of surfaces the blood touched; the person cleaning up should wear latex gloves and all soiled materials should be disposed of in a sealed plastic bag. Toothbrushes should never be shared—not for fear of spread via infected saliva, but to avoid potential transmission via blood from bleeding gums. Researchers are trying to develop a vaccine to prevent HIV-infected children from developing full-blown AIDS, but have had no success to this point.

Prognosis.
Predictions are difficult to make, as the course of the disease can be quite variable. The first year is the period of greatest risk for HIV-infected children, but many do not even develop serious symptoms until they reach school age or adolescence. Some children do better than adults, and the hope is that many will live to see a cure or at least more effective treatments.

What is it?
An immune-system–mediated reaction to a substance, or “allergen” (see “What causes it?” page 706 for common allergens). Some allergies can occur any time of the year (food, dust, and drug allergies, for example); others, such as pollen allergies, occur seasonally, usually spring, summer, and/or fall. A single allergic episode can last anywhere from a few minutes to several hours to several days. The symptoms vary, according to the organ or system affected, as follows:

The upper respiratory tract (nose and throat): watery, runny nose (allergic rhinitis); sinusitis (not common in very young children); fluid in the middle ear (otitis media with effusion; see page 610); sore throat (from the allergy itself, but also as a result of mouth breathing when the nose is stuffy); postnasal drip (mucus dripping from the back of the nose into the throat can trigger a chronic cough); spasmodic croup (see page 602). Children with allergic rhinitis often have dark circles, and sometimes folds, under their eyes; they may also do a lot of mouth breathing and have a crease across the top of the nose from frequent wiping (the allergic salute).