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Caring For A Child With Disabilities Or Chronic Illness

Apr 20, 2008
It's normal to react to the diagnosis of your child's disability or chronic illness with grief, shock, anger, fear, denial, guilt, or anxiety. Your response will depend on your personality, support system, the condition your child has and its severity, the treatment it requires, and the demands and limitations the condition places on your family. You may grieve over losing your dream of a healthy child. You may worry about whether you will be able to afford all the treatments-therapy sessions, special equipment, and special schooling-your child needs. You may feel angry about having to give up your own dreams of buying a home or taking a vacation. The requirements of your special-needs child may prevent you from providing opportunities to your other children.

Eventually you will come to terms with your child's diagnosis and acknowledge the implications of his or her condition, even though it may always be difficult to accept. From time to time, you will probably feel sad that your child can't do all the things that other children can. Again, these feelings are normal.

It's essential to try and balance your child's needs with the needs of each family member. The following suggestions can help minimize the stresses and strains involved in coping with a chronic illness or disability:

* Take care of your own needs. When you feel you need a break, find a babysitter and go to a movie or out to dinner.

* Nurture your relationship with your partner.

* Don't focus attention solely on the child with special needs. Enjoying activities with your other children will draw all of you together as a family.

* Try to fit your child's treatment regimen into family routines.

* Work closely with the professionals who care for your child.

* Talk about your feelings and encourage other family members to do the same.

* Be flexible in setting rules and defining expectations within the family.

* Find a few good people you can count on to share the day-to-day care of your child; involve extended family members and close friends.

* Be realistic about your child's situation and capabilities but encourage him or her to achieve goals to the best of his or her ability.

* Make realistic plans for your child's future.

* Share experiences with other parents who have children with similar conditions.

* Get counseling when you need it. It's normal to feel sad and frustrated once in a while, but if you are persistently feeling despondent and helpless, you need to get help. Ask your child's doctor, a social service agency, or a local medical center for the name of a professional who can help you.

Siblings of a child with special needs often experience the same feelings that parents do-grief, guilt, anger, and resentment. They may feel guilty that they somehow caused the disability or feel jealous and resentful of the attention given to the child. Many siblings who love and care for their brother or sister
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