Newsline Volume 32, Number 4

Looking for Answers, Hoping for Support

By Mary Castro Summers, Director, Family TIES of Massachusetts

As parents, we go through a range of emotions when we learn that our child has health concerns, big or small, short- or long-term. Maybe the root is a medical condition that is genetically based, an injury resulting from an accident, complex health issues that are noted early in life or later on, or even what seemed to be just a viral infection. No matter what the cause, the coping process is similar. We start with a need for answers. What are the short- and long-term issues? How will this health concern affect my child's quality of life? Who can I trust to deliver the best health care possible - to make the most of a challenging situation?

Finding answers can be challenging. Parents need to start with a medical team that will take the time to explain the issues in language they can understand, share written information so that they can take it in at their own pace, and encourage open lines of communication. The team should understand that parents know their children best. A doctor may have had the luxury of treating dozens or hundreds of children with similar health concerns, but never someone just like your son or daughter. Parents are most familiar with their child's norms, whatever they are. It is crucial that parents share their observations on how a medical condition affects their child: fever, pain, energy level, appetite, ability to concentrate, interest in everyday activities, friendships. Keeping excellent notes will contribute to the overall ability of the medical team to assess and treat your child.

For parents, another important aspect of receiving exemplary care is feeling supported by the medical team. It is physically and emotionally exhausting to care for a sick child, particularly over long periods of time. Parents should seek out a specific member of the medical team to discuss how the situation affects them, and they shouldn't be afraid to ask for help in finding a support group or other means of emotional support. If you are one of these parents, it is important to remember, you are not alone.

The Parent-to-Parent Program at Family TIES of Massachusetts offers parents two gifts. First, it offers a means to find other parents who have been through the long haul of caring for a child who has special needs. What a positive experience it is to have a conversation with someone who truly understands what you are seeing and hearing and feeling. The second gift is the opportunity to give back by becoming a volunteer Support Parent. After making contact with someone who is at the beginning of the road they have traveled, our Support Parents report a deep feeling of gratitude for the opportunity to help someone else. It also helps them recognize just how far they have come in their own journeys. Parents involved with the Parent-to-Parent Program are grateful for opportunities to discover, benefit from, and to give back to the blessings of the special needs community.

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To learn more, contact your Family TIES Regional Coordinator through our toll-free line: 800-905-TIES (8437) or visit the website: www.massfamilyties.org.
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