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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.
Reprinted with permission from Elizabeth A. Pector, M.D., Spectrum Family
Medicine, Naperville, IL. Read more articles about multiples at her website
at
http://www.synspectrum.com/multiplicity.html. Additional
articles on multiple birth, prematurity & loss are at
http://www.synspectrum.com/articles.html
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