What to Expect the Toddler Years (251 page)

Be persistent.
If you feel strongly that something is amiss with your child and a diagnosis isn’t forthcoming, keep trying until you find an answer. (Diagnosis is sometimes difficult, especially for conditions that are relatively rare such as metabolic disorders. Testing is available for many of these rare conditions, and early diagnosis and appropriate treatment can, in many cases, make a life-or-death difference. Persistence will pay off in many instances. Likewise, be persistent in asking questions and seeking answers if you feel the treatment your child is receiving isn’t working or isn’t the most up-to-date, if your child’s
doctor (or doctors) aren’t keeping you informed, or if you simply have the nagging feeling that more could be done.

Be a meticulous record-keeper.
Keep a record of all of your child’s medical reports, tests, appointments, treatments, medications, doctors, therapists, and so on—either in a loose-leaf notebook, a file folder, or on the computer (if you use the computer, you will still need a folder for x-rays, test reports, and the like). Put questions in writing, too, so that you’ll have them ready when you meet with doctors or other professionals. Emergency numbers (inside back cover) and other pertinent information about your child’s condition should be posted at every home phone, carried by anyone who cares for your child, and available to administrators, teachers, and other caregivers at day care, preschool, and intervention centers.

Be a pair.
When two parents are available, both should be involved in medical consultations, in learning to deal with day-to-day issues, and in day-to-day care. If one parent consistently gets information regarding their child’s condition secondhand, he or she may have trouble making sense of it—or accepting it. If one parent consistently has to shoulder the many demands of caring for a special-needs child alone, the stress may be debilitating, and may breed resentment. If you’re a single parent, try to enlist a grandparent, another relative, or a friend to share the burden, if possible.

Be assertive.
If you have questions, ask them. If you don’t understand the answers, ask for clarification. Request diagrams, written material, and a list of sources that can help you to learn more. If your child isn’t responding to therapy as expected, speak up. If you think something else might work better, say so. If the prescribed amount of medication seems to be too little or too much, report your concerns. If a health care professional does something that you find irritating or worrisome, let him or her know—but avoid slinging angry words. (“I was very upset by what just happened . . .” is better than a torrent of irrational fury.) And when the doctors aren’t giving consideration to what you have to say, and the social worker can’t improve the situation, try to find another medical team with comparable expertise.

Be cautious.
Parents of children with special needs of any kind are always hoping and searching for ways of improving the condition and the quality of their child’s life. But while it pays to persist in pursuing this goal, it also pays to be wary. For every legitimate advancement or alternative therapy, there are many more that are unproven, or worse still, potentially dangerous. Consider alternatives when the tried-and-true medical treatments aren’t working, but proceed with prudence—and always consult with your child’s doctor first.

Be positive.
Don’t waste time or energy blaming yourself for your child’s condition, or feeling sorry for yourself or your child. For both your sakes, focus on being as upbeat as you can.

Be realistic.
As important as it is to keep a positive attitude, it’s also important—for your sake as well as your child’s—to be accepting of the situation. Though you should investigate every avenue when it comes to treatment and management, you should also accept what can’t (at least, as yet) be changed.

Become financially savvy.
Paying for care and treatment of a child with a chronic illness can drain any family’s resources. Learn all you can about what support is available from your health insurer, as well as from local, state, and federal sources (see page 694).

Each child is an individual unlike any other. Even children who share the same physical or emotional challenge are never exactly alike. But though no two special-needs children are the same, some basic needs are common to them all—and to their families.

Love.
Focus any anger or frustration you feel where it belongs. Despise the disability, hate the illness, disapprove of the behavior, if you must, but
love your child
—unconditionally. Show your love for your special-needs child in the same
ways you would show love for any child—a hug, a kiss, a squeeze of the hand, an offer of help, a moment shared, patience and understanding.

If you find it difficult to love your special-needs toddler or if you find your anger leading to abuse (children with special needs are abused twice as often as other children), seek professional help immediately. Your child’s doctor can help you find it.

Normalcy.
This is a tough but absolutely crucial order for a family with a special-needs child. Strive for a normal family life in as many ways as possible and make every effort to treat your special-needs child as you would any child. Nurture his or her dignity and self-esteem by always being respectful, both in words and deeds. And though this may be most difficult of all, don’t withhold discipline. Set limits according to your child’s abilities, but be sure there
are
limits. Being overindulgent, overpermissive, or overprotective toward a child with special needs won’t help—and may very well impede—his or her development.

Remember that, like all toddlers, a special-needs child is likely to want to “do it myself.” Instead of always jumping in and taking over (“Here, let me do that for you”), give your child the chance to try to handle things independently whenever possible. When doing it “myself” leads to mistakes (it inevitably will), encourage your toddler to learn from the mistakes and strive to do better the next time. And no matter what the final result, always praise the effort.

Most special-needs toddlers are also prone to other typical toddler behavior—including tantrums, negativity, self-centeredness, and separation anxiety. Try to respond to these behaviors just as you would with any toddler (check the index for individual behaviors and tips on coping with them).

And as much as is possible, see to it that your child’s condition doesn’t prevent him or her (or you) from enjoying the simple pleasures—playing with toys, going out, making friends, meeting new people.

Consistency.
If your child’s condition is one that takes getting used to—and friends, neighbors, playmates have already made that leap—it may be a good idea to avoid moving from your community and having to start all over, at least until you are all more secure.

Clarification.
In the simplest terms, try to explain the situation to your toddler, making it clear that it isn’t his or her fault (a typically egocentric older toddler might jump to that conclusion). Explain that nobody knows why, but some children are born with . . . (or without . . .) or have a . . . that doesn’t work just the way it should. Empathize with your child as he or she becomes conscious of the negatives (“I know you don’t like . . .”), but whenever possible, emphasize the positives (“but you can . . .”). Explain that all the therapy, medications, and other interventions are important to help your child grow to be the best he or she can be. Be upbeat, supportive, and reassuring, but don’t dangle false hope (for example, giving a toddler who will never walk—at least not with the present medical technology—the impression that hard work can make it happen). When you don’t know the answer to a question your toddler asks, say so; then try to get the answer.

Explain the situation, too, to siblings, grandparents, other family members, and close friends. The more they understand, the more supportive they can be—though some people, unfortunately, never come around to being comfortable and accepting.

Appreciation.
Every child, even the most severely challenged, needs to feel appreciated. Let your child know that he or she is. Look beyond the condition for qualities and character traits that make your child special—a beautiful smile, a kind heart, a way with animals, an indomitable spirit. This appreciation can improve your outlook as well as your child’s, and give your family the strength it will need in trying to overcome the obstacles that lie ahead.

Others in your child’s life will also need appreciation. Show your gratitude to supportive family members and to those who work with your child (people in the helping professions very often suffer burnout; appreciation can help slow that process while making the hard work more worthwhile). You, too, will benefit from a little appreciation. Since you’re unlikely to get all you need from your child (young children aren’t usually quick to acknowledge their parents’ efforts), look to your spouse, another relative, a good friend, or a support group to build you up when you’re feeling underappreciated.

Courage.
Especially when your child’s condition is life-threatening, or when he or she faces a difficult or painful procedure, courage may be in short supply. Don’t keep your fears pent-up—talk them out with a professional, or a relative or friend who has a sympathetic ear—but try hard not to air them in front of your child. A parent’s fear can heighten a child’s apprehension, while a parent’s calm can make a child less fearful.

Relief.
To be effective in what they do, all parents need a break once in a while. But because the demands on parents of children with special needs can be so overwhelming, your need for relief is even greater. Look to respite care (see “General support,” below), day care, or friends or relatives who offer to help. Build some private time into your week—go to a movie, relax in the tub, have a massage, jog, enjoy a candlelit supper. And never feel guilty about taking time off; you’ll return refreshed, more relaxed, and better able to help your child.

Fun.
Simple pleasures sometimes vanish from the lives of families with a physically or mentally challenged or chronically ill child; family members often feel guilty at even the thought of having fun. But taking a lighter approach to life can make your child’s special needs seem easier to deal with and help you think more positively (which can be contagious). When the going gets tough, try a little laughter, a little silliness, a little
frivolity, to get you going again. You all deserve it.

Early intervention.
Virtually every condition can benefit from early intervention. Make sure your child gets the best available in professional diagnosis and treatment as early as possible. If a day-care or preschool program for children with your child’s special needs is available, sign yours up. These programs help children learn valuable coping and social skills and can often make a major difference in a child’s life. But you can help, too. You can greatly enhance the benefits of both medical and educational interventions by getting the training you need to extend the stimulation and education to the time your child spends at home.

General support.
Some states offer respite care, which may include nonmedi cal care, babysitting, in-home care, family counseling, and classes. Check with your doctor, therapist, or caseworker.

Parent support groups.
Thousands of such groups are active around the country. (If there is no group in your area for parents of children with needs like your child’s, consider starting one.) Caring for a special-needs child can be physically demanding and emotionally draining. Meeting regularly with parents who share your concerns can be very therapeutic, and can allow you to vent your feelings of frustration, anger, and resentment in a healthy way and in an empathetic forum, rather than bottling them up or taking them out on your child, on yourself, or on the rest of the family. The swapping of experiences, insights, and coping strategies can also be invaluable. Check with your child’s case coordinator, social worker, or doctor, or call a national organization for information (see page 694).

Relationship support.
While romance is always elusive when there’s a young child in the house, it can be even more so when the young child has special needs. Yet studies show that having a special-needs child doesn’t automatically put a marriage at risk; in fact, it’s just as likely to strengthen a marriage as it is to weaken it. Buoy your chances of marital success by supporting each other emotionally, sharing responsibilities (no one parent should have to go it alone), setting aside time to spend as a couple (very difficult, but very important), and keeping the lines of communication open so that you can share your feelings—both positive and negative.