RAISING SPECIAL NEEDS MULTIPLES

Elizabeth A. Pector, M.D.

OCTOBER, 1999

Raising multiples is challenging even when they're healthy. It can be overwhelming when parents have premature or special needs children. Parents who are successfully parenting multiples with health or behavioral challenges emphasize the following points.

Support and self-care. Recognize that you will probably grieve for the loss of your child's normal abilities. This grief continues throughout life, with parents saying they love their children as they are, but still wish they could have been normal. Honestly recognizing and working through the early disappointment, denial, anger, guilt, and fear makes it easier to attend to your children's practical needs. Parents of special needs multiples often feel isolated, not fitting in with parents of healthy multiples in local twins clubs, but also not finding their needs fully met by groups of parents with disabled singletons. Most parents piece together support from a variety of sources, including sympathetic family or friends. Some parents of multiples organizations keep registries of parents whose children have particular disabilities, and local and national organizations might be able to introduce you to experienced parents who can offer guidance in coping with your child's situation. Those who have suffered the death of a multiple and have survivors with special needs might find parents who have confronted similar challenges through CLIMB. Many parents find valuable support through the Internet and organizations devoted to their child's condition.

Parents often neglect caring for themselves and the healthier children in their family in their efforts to meet the needs of their challenged children. This can lead to burnout, deterioration of a marriage, and even temptation to abuse or neglect disabled children. Eat and sleep as well as you can. Make regular dates with your spouse, arrange vacations and respite (rest) breaks to get away from the situation, take time for hobbies, and spend private time with your healthier children. Train other family members and friends to care for your children so you have dependable babysitters. This is also important in case of an emergency (for instance, your own hospitalization or urgent travel). Reliable help with child care and housework is a high priority for any family with multiples, and is essential for your sanity if your children have special needs. Parents should work out a fair division of duties, to avoid one overworked spouse building up resentment. Recruit assistance from family, neighbors, churches, community and charitable organizations--it's no time to try to be Supermom! Accept all offers of help, and tell people specifically what they can do to help you.

Depression is more common in parents of multiples in general, and is even more likely if one or more of your children have died or are disabled. The more overall stress, daily hassles and disability-related problems you have to contend with, the greater your risk of depression. Seek mental health care if you feel you're having serious trouble coping, because effective treatment of your own depression will lead to your children getting better care from you.

Parenting If your children were born two or three months early, it might be quite awhile before they smile, hold their head up well, or roll over. This delay in development and social responsiveness is discouraging to many parents, especially if children require a lot of care and parents aren't getting much feedback in return. Many parents find they get more attached to one child than another when one is more fragile after a premature delivery, or if only one has special needs. Most often it's the healthier one that's easier to love. Try to recognize when you're playing favorites, and avoid labeling your multiples with terms like "the smart one, the retarded one, the crippled one," etc. Some parents after a premature delivery, when the children's chances for health or survival are uncertain, protect themselves by trying not to get too attached to any of them. This is a normal coping mechanism, but might delay bonding. It may take months, especially with preemies, but you should gradually fall in love with all of your children.

Your feelings about your child's disability may be frustrating and even scary. Remember that you are grieving the loss of your child's normal abilities. Depression, feelings of rejection or anger toward your disabled child, fear of overprotecting a healthy one, feeling overburdened at the prospect of caring for two or more disabled babies, guilt at having delivered prematurely and somehow failing your children--all of these are common reactions. Don't expect more of yourself than you can reasonably accomplish. Adjusting to a child's special needs is a slow, gradual process. It may be harder if your child has mental retardation, language delay, deafness, or a severe disability requiring round-the-clock care. Most parents do find their lives less stressful when children reach school age.

Parenting premature or disabled multiples is a complicated juggling act, and you need to set priorities that work for your family. You may not be able to promptly arrange or afford evaluations and care for each child at the same time. I've known parents with two disabled singletons who postponed investigations and therapy for one child because the needs of the other were more urgent. Still, be alert for mild problems in your healthier multiples while you're dealing with your more seriously affected children. Most importantly, all of your children, whether disabled or healthy, need affection and mentally stimulating, enriching experiences at home.

Your children need to be treated as normally as possible. Set limits and discipline them as you would a child without a disability. If you have one disabled child and one healthy, it is important not to hold back the healthy child's development in order to keep them "more like twins." Older and younger siblings need one-on-one time and attention to their concerns, too. Care must be taken to ensure the healthier children are not overly burdened with caregiver tasks (bathing, dressing, changing, therapies, etc.) They may be quite attached to their disabled sibling and want to do everything in their power to help, but it is important for them to form friendships with other children their age and to have freedom to play, leaving the adults to manage the special needs child's care. Balance is the key. Reading children's fiction books about disabled multiples may help both your healthy and special needs children feel less alone in their situation.

Birthdays of premature or special needs multiples, especially if any of the babies died before or after birth, often bring to mind traumatic memories--"the start of a horrible experience." Some parents, even ten years later, feel more comfortable celebrating their children's birth on a different day than the actual birthdate: on the original due date, or the day their last child arrived home from the hospital. Others hold an annual family party a few months after the true delivery date when their annual sadness has subsided. Whatever helps you get past bad memories so you can properly celebrate your children's life is a valid tradition, even if your family doesn't understand your "problem" with the real birthdate. Most parents appreciate guests remembering deceased multiples by name in some way at a birthday celebration. Parents themselves often include a symbol such as an angel or butterfly on the cake, or plan a balloon release, a moment of silence, a poem or prayer reading.

Economics Money problems are a major burden for many families with special needs children. Insurance often doesn't cover many services, or may impose a limit on reimbursable costs that parents with high-needs children will quickly reach. Many services are income-based, with more help available to low-income parents. Unfortunately no national organizations will be helpful in locating funds. Your state Department of Public Health and Department of Public Welfare may have suggestions. Also contact local parents of multiples clubs, charitable organizations such as Lions Clubs, Jaycees, Knights of Columbus, Kiwanis, and church or religious groups that may be willing to help fund or construct home modifications not covered by insurance, such as ramps, lifts and changes in your home to accommodate your child's disability. United Cerebral Palsy Association, Easter Seals, and the March of Dimes may know of special programs that can benefit your child.

In our community, several families each year establish a trust fund and launch publicity drives or charitable events on behalf of their child with a serious disease or disability. Golf outings, charity walks, college dance marathons, and newspaper publicity for scholarship or treatment funds can help raise needed money for your children's care. Don't be too shy or proud to ask for help. Many people are generous and willing to help when they know a need exists. If possible, involve others in brainstorming creative fundraising ideas. It takes energy, but may help ensure your children's future well-being.

Clinical Visiting babies in the hospital after a premature delivery can be stressful, and for some parents the neonatal intensive care unit will be a second home for months. Learn early about the hospital's rules and routines. You should be respected as an important person in your children's lives, and encouraged to take part in their day-to-day care. Try to spend equal time with all of your children, or more time with a very critical child. Parents who feel confused, helpless, or guilty due to the prematurity or disability of their children often feel unworthy of making demands on busy medical staff. You need to clearly understand your children's medical conditions, and can ask for written handouts about your children's illnesses and references to good books about premature babies. Ask for support from the social worker, who might be able to help with transportation needs, or help you find babysitters for older children so you can spend more time at the hospital. If one twin is home and healthy and the other is hospitalized for a very long time, see if your baby can come home for a day on a pass, so siblings and the healthy twin can spend some time away from the hospital with the child who is ill. When it's time for discharge, be sure you're comfortable and familiar with any equipment (monitors, oxygen, feeding tube or tracheostomy, etc.) and that a nurse will check on the babies once they are home. Some babies must avoid exposure to others for many months due to risk of infection. This is isolating, but try to keep in touch with family and friends by phone, letters and photos until the doctor okays personal visits.

Some developmental delays don't become obvious until months or years after delivery. You should closely question your babies' doctors if you become concerned about your children's growth rate or skills. Doctors don't like to diagnose cerebral palsy, autism, and some other conditions too early. Your child may receive therapy for months without a clear-cut diagnosis, and the therapy, not the medical label for your child's condition, is the most crucial influence on their future outcome. Once multiples reach school age, more subtle learning disabilities may become apparent, especially if they had very low birth weights. Be alert for problems once they enter school and keep pressure on doctors and the school system to have realistic concerns properly evaluated.

As your children grow, find doctors and therapists that you can work and communicate with. A pediatrician experienced with special needs children can help coordinate your child's care with other specialists and therapy providers. Don't assume professionals always know what is best for your child or that they have all the answers. ASK QUESTIONS if you don't understand what a doctor has told you about your child's condition, or are unsure how to perform therapies, when to give medication, etc. Don't be afraid to second-guess recommendations that you feel won't work for your child. If you have doubts about the diagnosis or treatment recommendations given by your child's doctor, and before any major procedure or experimental treatment, get a second opinion from another qualified specialist. Be realistic in trying to accomplish all the tasks that different specialists and therapists have assigned you. One woman calculated that her son would require eight hours a day of therapies and treatments that different professionals prescribed, and somehow she was supposed to coordinate meals, naps and time with her healthy child in the course of a day also! You can only do your best, and make sure your primary pediatrician realizes the full burden of care that your child requires.

Information/Internet Do your own homework and learn as much as you can about your child's condition. Write to organizations dedicated to your child's illnesses. Some local or national parents of multiples groups may have collected valuable information on your child's disability. Internet medical information and e-mail support groups or bulletin boards can be helpful, but be careful, since medical information in particular is often unreliable. The Disability List of Lists has a large listing of e-mail parent support lists where you can exchange e-mail with other parents raising children with your child's challenges. The specpar list, preemie-l, our-kids, CP parent, and CLIMB's SNAPS list for parents with preemie or special needs survivors after a multiple birth loss are especially helpful.

Some parents feel compelled to find every last piece of information written about their child's condition. This apparently unreasonable search for information is part of the coping process. Every parent wants to make sure their child receives the best possible treatment and that no stone is left unturned where there may be hope of a cure or improvement. If others criticize your search for reliable advice, remind them that you are motivated by your love for your children and your desire to see them get every possible advantage. Before acting on any information you locate, make sure that it is accurate and review it with a knowledgeable doctor or therapist.

Advocate You are your child's best advocate. You'll need to be assertive to get services, financial aid, information, help from medical caregivers, and optimal responses from the school system. It can take a lot of phone calls and letters, but persistence pays off. Choose your battles wisely and prioritize. It helps to be organized: keep a list of "Things to Do", and a medical calendar for doctors' appointments, therapies, medication start and stop dates, supply ordering, etc. If you have the time, energy and motivation, many parents find it meaningful to educate the public about children with special needs in general, or their child's illness in particular. Education decreases ignorance and discrimination toward those with special needs.

The earlier children with special needs can get appropriate therapies and intervention, the better. Listen to your instincts, and keep the pressure on to get whatever testing needs to be done to verify whether a problem exists. Don't be dissuaded by professionals quoting "twin myths" about twins always talking later or developing motor skills later than singletons. If you feel there is a problem, it is worth discussing with someone knowledgeable. The best person may not be your general pediatrician, but instead a therapist or pediatric specialist.

Advocate for your child in social situations, too. Friends, family members and parents of multiples clubs may need to learn how to include your child in their gatherings. Ask about wheelchair accessibility and accommodations for your child's medical needs, schedule and temperament. Talk with them in advance about your child's abilities and difficulties, and invite them to talk and interact with your child, remembering that your child is a PERSON first--the disability comes second! Children with behavioral difficulties can become overwhelmed in noisy, crowded locations. Use common sense when planning outings, and be flexible in limiting time spent at long events if your child tires easily.

Learning Your child's education is vital. Contact NICHCY and ERIC-EC to find out about early intervention and special education services, and identify local school district and state resources. Bring someone with you to Individual Education Plan meetings to help take notes while you talk with teachers, and prepare a list of concerns and questions in advance. Many multiples, especially low birth weight children, can develop subtle learning difficulties as they grow older. Be aggressive in demanding assessments if you feel your child isn't working up to his or her potential, and insist on whatever adaptations will help your children learn their best. Networking with other local parents of special needs children can give you insight into how responsive and sympathetic your school district is.

Separating healthy and disabled multiples may be difficult for them in school or preschool. It is best to delay or limit separation when possible, since the relationship between multiples is a crucial coping mechanism for many children. A visit by each child to siblings' classes reassures them all that their siblings are in good hands while they are apart. It also allows classmates to accept and interact with children who have differences.

Be sure the school knows that your child is a multiple. Sometimes teachers think a child is a singleton when a disabled twin is at home, a healthier multiple is at a different school, or a child's co-multiples have died. Teachers and counselors responsible for each child's welfare need to know about multiple-related psychological issues for both children and parents, especially the practical difficulties of juggling several children's needs.

Conclusion: Children with challenges, like all children, need love and care in order to thrive. Seek support and information, and respect the unique bond between your multiples. Look for hidden blessings in your situation, including other wonderful parents and special children you will likely meet. Be optimistic but realistic. Take care of yourself, your spouse and other children as well as your children with disabilities. Aggressively seek financial and practical help from others. Advocate for your child with medical providers and the school system. Most of all, realize you're not alone in your struggles. Others have paved the way and are more than willing to share their discoveries. Contact Dr. Pector at P.O. Box 5845, Naperville, IL 60567-5845 for helpful lists of Internet sites, e-mail listservs, and children's books.