Luke's Tuberous Sclerosis Page
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To Those Supporting:When lending support to parents of special needs children, we need to recognize and respect the stages of acceptance that they are going through. Observe what levels of support the family is seeking. Respect that they may not have given up hope or accepted that their child may have special needs. Learn about Tuberous Sclerosis and the afflications it may cause. Our society is so inclined to find a solution to everything; often a parent just simply needs to talk and be listened to instead of receiving advice. Respect their unique personality and coping mechanisms that carry them through this experience. Understand that as parents of special needs children, they are doing the best possible job and make the best decisions based upon past knowledge and experiences. Grandparents, friends or family members can make everything a whole lot easier or a whole lot harder. Supporting a parent can bring out the best in friends and relatives or sometimes the worst. Families may be extremely supportive or not as available. Grandparents may be going through a similar acceptance process; not only is their grandchild struggling but so is their child. By accepting a child's disability and understanding limitations, they will be more capable of supporting the immediate family. Some people may respond by thinking you are making a big of a deal or some may feel you are not doing enough. Saying things like "They will grow out of it", "That involvement isn't necessary", "Give her this miracle cure", or "Just when is she going to talk" are signs that one is not completely empathetic or have come to a complete understanding. Remember that grandparent coping mechanisms may not be similar or in the same order as parents; patience and time will bridge this gap. When supporting others, be sensitive to their tone and needs. Look beyond the child's disability and recognize the child. Eliminate the "shoulds" or act of undermining. Small spontaneous extensions of love may include acceptance, flowers, meals, notes, phone calls, time with family, gift certificates, babysitting, running errands, or a gift for children or parent. One of the best tools for supporting another parent is not judging them or their child but rather being empathetic. To Those Being Supported:Parents can be responsible to educate family and friends in regards to their child and realize that other people do not share their intimate perspective. Keep them up to date with phone calls, letters, e-mail and pictures. Have them visit and delegate care of your child so they are more comfortable. Invite them to office visits where they have the opportunity to ask medical professionals questions. Send introductory packets from NTSA or books and articles you have collected. We especially enjoy e-mailing our family with up-dates. E-mailing family is more practical than spending exhausting emotional hours with each caring member on the phone explaining the days events. They then call or e-mail us back with specific questions. In doing this, we don't forget to call someone or include a particular detail. It has been fantastic. Understand that as a parent of a special needs child, some people may not know what to say. They may not want to impinge on your privacy or be nosy. Set the tone and let them know the best way to support you. Your relationships may change and you may find new comforting ones. Try to be forgiving and patient, take the initiative, relay information, get others involved, accept help, put yourself in anothers' shoe, guide them and lead the way. As parents it is helpful to teach other people about Tuberous Sclerosis and increase public awareness. This will increase an interest in supportive services for families and research. By being an advocate for our children, we will help people to not be fearful, ignorant or prejudiced. Most important our family and friends will be there for us because they understand what we are going through and what we need. Written by Deanna Runyan a parent of a Tuberous Sclerosis Child. References: Miller, Nancy B., Nobody's Perfect, 1994. Simmons, Robin, After the Tears, 1987. Smith, Patricia McGill, NICHCY, Vol III, No 1, 1993. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
