|
|
|
CLICK HERE for calendar of 2009 events for adult siblings. Click here to join the "Sibs Rock" team of adult siblings supporting the BIG FOOT fundraiser on May 30.
As the number of parents caring for their children with disabilities increases, social and financial supports continue to decrease, leaving long waiting lists for services in most areas. Adults without disabilities are then called upon to coordinate the care of their siblings at the very least, and provide direct care in many cases. The conflict in loyalties to their siblings, their parents and their own children can be a struggle.
Samantha is frustrated, angry and resentful. She wants her parents to discuss a plan for the care of her sister, but she is reluctant to bring up the topic in fear it will upset her parents. As Samantha grew up, she was expected to help care for and entertain her sister. As she recalls her childhood she felt the isolation, embarrassment and fear of disappointing her parents that many siblings feel as they grow up. She has been very close to her sister but her parents have left her out in discussing the future care of her sister, perhaps they feel this would protect her. Now that her parents are elderly, it is an unspoken assumption that Samantha will take over as primary care giver. But without a plan and honest discussion with her parents, she feels inadequately equipped and fearful of the future. Currently, the Fox Valley Sibling Support Network is offering adult siblings a series of educational and networking sessions called FUTURE IS NOW!, developed by the University of Illinois at Chicago. The 2008 Future is Now! series is made possible by a grant from the SAC Developmental Disabilities Fund within the Community Foundation for the Fox Valley Region. Call 920-993-0882 for more information or click here.
Here's how one sibling attending the 2007-2008 Future is Now! series feels about it. I participated in the first series of the Future is Now! programming offered by the Fox Valley Sibling Support Network (FVSSN) with my sisters Katie and Melanie. Melanie has Down Syndrome and lives with our Mother. Harriet Redman, executive director of FVSSN brought the Future is Now! program to the Fox Valley with an effort to guide families by looking at future planning for the person in their family who has a disability. The program is a series of meetings that siblings attend together with their sibling who has a disability and talk about their dreams for the future; such as living arrangements, job planning, daily activities, spiritual life and personal relationships that would like to be maintained. Together, we outline in detail each segment of our sibling’s life and write out on paper what our thoughts are. We have individual discussions with our sibling and also group discussions with all of the program participants.
The written plans that are made include information on medical needs, daily needs, family and friend contact information, professional provider information, etc. The Future is Now! program gave us the tools to have the discussions in our family about planning. We also benefited from the conversations that we had with other adult siblings who are going through the same planning process such as us. During every session, we were all able to laugh together, cry together, and praise each other about our accomplishments; which were huge! I would definitely recommend this program to any family that has a person with a developmental disability within it. Even if you already have a concrete plan for that person, it is still a good idea to network with other siblings and share ideas, experiences and brainstorm with each other. We are not alone and we are blessed to have the existence of the Fox Valley Sibling Support Network in our community. ~Anne Lagunes
Tips for Adult Siblings (adapted from www.sibs.org.uk) You feel that others do not understand your situation Talk to other siblings when you have the opportunity. Join a sibling support group or SibNet, a listserv group available. To learn how, visit Sibling Support Project Read about the experiences of siblings in Special Siblings – Growing up with someone with a disability, by Mary McHugh or one of several books listed in Books and Resources . You feel you have missed out as a child It is OK for you to lead a life of your own and still be a part of your family. Many siblings feel guilty about being talented in some way. Allow yourself to enjoy your talents as this will improve how you feel about yourself. Celebrate your achievements, however small you think they are. Ask yourself ‘What have I achieved this week?’ and give yourself a reward for these. Do those things now that you wished you could have done as a child! For example camping, playing drums, spreading all your stuff over the kitchen floor, having friends stay at your house… Sometimes you feel that your brother or sister is still the focus of attention in your family and you feel resentful This is normal even though you may think this is not a very ‘adult’ way to feel. Make an opportunity to talk to your parent about what it was like for you in childhood. Ask him/her if they ever wondered about your experience of being a sibling. Tell him/her about the benefits of being a sibling as well as the difficult things. Ask your parent if you can have some of their undivided time for something special for you; like going out together; helping to decorate a room; playing with your children; going shopping…. You are unsure about the genetic implications for you (or your children) of your brother or sister’s condition Find out more about your brother or sister’s condition. There is more medical information available now than when you were a child. Discuss with your parents or "google" the internet. For information about a variety of topics, visit NICHCY National Dissemination Center for Children with Disabilities. You feel lonely because you are an only sibling For some it may help to find a special friend who can become the ‘sister’ or
‘brother’ that you wanted to have as a child; to share confidences with and to
be there for you when you need them. You are concerned about the future care of your brother or sister
Get together with parents and any other siblings to discuss future care. It is important to find out what different family members want and not make assumptions that one family member will become the lifelong career. Honest, open discussions now can save a lot of heartache later on. Make a plan for the future and write it down even if it’s not 100% OK. It is better to have something to go on that you can review every couple of years. Making any plan prior to the death or incapacity of a parent is much better than trying to cope with this uncertainty as well as the grief. You are already the main carer for your brother or sister If your brother or sister lives in your home you may need help in dealing with a range of practical, financial and emotional issues to do with caring. Contact your local Health and Human Services Department for advice and support. You may live in another part of the country from your brother or sister. To find out about local services contact the Arc in that area. Siblings who also have children of their own can find it hard to balance the range of responsibilities. Make sure you get some time for yourself – for hobbies, meeting friends, resting, and taking care of your health. Sometimes you can only see the negative aspects of being a sibling Acknowledge that some things have indeed been difficult for you; that it is normal for siblings to experience anger, resentment, anxiety and guilt. Make a list of all the benefits you have gained from being a sibling such as being tolerant of others; being practical; having empathy; resilience; valuing life; skills and knowledge you may have learned at an early age… Think about how you have used these benefits for your work or social life. In what ways have they made some things easier for you? Think about the humorous stories that you could tell other siblings about your family life. Write them down, or make a scrapbook of the special memories you have as a child. You are concerned about your brother or sister’s quality of life If your brother or sister lives at home you will need to discuss this with your parent and brother or sister and see where you can work together. Work on improving one thing at a time such as social life; learning new skills; being more independent; personal care; entertainment; work opportunities… If your brother or sister lives in assisted living, ask to be included in meetings and discussions about your brother or sister’s care. You continually feel low or depressed Ask your doctor to refer you to a counseling service. You may need to talk through some of the issues from your childhood in a structured way. Most people feel better when they have things to aim for. Set yourself a goal for this month and each day take a small step towards it.
|
|
|
