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This publication was developed with funding from the Administration on Developmental Disabilities of the U.S Department of Health and Human Services, through a Family Support 360 planning grant. The purpose of this grant is to plan for a single point of entry for Hamilton County families who have young children with disabilities. Contents
This booklet is protected by copyright under United States law and by international copyright laws and treaty provisions. You may copy and distribute the work provided that you use the work for personal, noncommercial use; do not add the work to a collection or use it with any other text, photographs, artwork, etc; do not modify or alter the work in any way or delete or modify any copyright; and do not publish or post all or any part of the work on any Internet site or in or on any other media without obtaining the prior written consent of Ohio Legal Rights Service. Copyright © 2005 Ohio Legal Rights Service. All rights reserved. Why should I try to meet other families?What do families find most helpful when they first learn that their child has a disability? Many families would say that meeting other families who have a child with a disability is most helpful. Meeting other families is important because it is a way for you to learn how to handle your emotions and the day-to-day challenges of having a child with a disability. It is a way to talk to someone who has experienced the same things that you have and understands your fears and concerns. Other families are also a valuable resource of information about services and supports for your child. As your child gets older and you get more comfortable with your child's care and needs, the type of support you need from other families will change. You will find that some families become long-time friends. Others will provide help during a crisis or other temporary situation. Overall, though, the need for support from other families is always there. Where can I meet other families?Where you meet other families depends on your own situation and needs. For example, some people live in remote areas or are not able to easily leave their home. For them, having a pen pal or participating in a support group on the Internet may work best. For some families, finding a family with the same cultural, religious, or social beliefs is important. Some families prefer to meet others in person, such as by attending a support group in their community. Each family is unique and should do what works best for their needs. Example of different ways to meet other families is provided later in this booklet. What makes meeting other families so important?Having someone to talk to who has "been there" and "done that" is one of the main reasons why families like to meet other families. In addition to having someone to talk to, here are some more reasons:
Sometimes a family might have a bad experience when they meet another family. They might be given wrong information, false hope, or unwanted advice. It's important to remember that each child and family is different. What works for one family might not work for another. If you do not feel comfortable with what a family is telling you, it might be best to find another family to connect with. How can I meet other families?Suggestion #1: Organizations and NetworksOrganized groups, such as support groups or family-to-family networks, are a popular way for families to meet each other. Support groups are usually organized by a similar topic, such as a specific diagnosis (ex. epilepsy, traumatic brain injury, or Down Syndrome). Support groups have regularly scheduled meetings where families can meet face-to-face. The meetings are held at a central location in the community where you live, such as a church, hospital, or a disability organization's office. Family-to-family networks are a type of "match-making" service. Families provide information about their child and family to the network. The network then tries to match the family with other families who are in similar situations. Some matching networks are run locally, allowing families to meet face-to-face. Others connect families from throughout the United States or even the world. In those cases, families talk with each other by phone, mail, or e-mail. Here are some ways to find support groups and family-to-family networks:
If you can't find a support group, consider starting your own. Families have started support groups by meeting at their own home and moving to bigger meeting places once the group grows. Others have organized groups with the help of their place of worship, local hospital, or child's school. Suggestion #2: Informal introductionsYour day-to-day life holds many opportunities to meet other families. Think about the places you go and the people you see, and you will realize that there are many families already out there ready to meet you.
A mother of a 9-year old son with multiple disabilities says that the best relationships she has found have been those that she met "by chance." Places she has met other families include the hallways and waiting rooms of Children's Hospital, the local YMCA, her child's school, the family's church, and even while on family vacations. Suggestion #3: Internet support groupsThere are many on-line support groups available through the Internet. An on-line support group is usually offered through a "listserv." A listserv is a group e-mail list. To be a part of a listserv, you must "subscribe" to the list to become a member. This is usually done by sending an e-mail message to the list's owner. When email is sent to the listserv, the message is sent to each member's email address. That way, everyone can see the message. Those who want to can respond to the message and when they do, everyone on the list will see the response. Here are some benefits of being a part of a listserv:
How to find a listserv group:
Remember that anyone can join a listserv, whether they have a child with a disability or not. Be careful to protect your privacy by not sharing personal information about yourself, such as your telephone number and address. Also, be aware that the subject matter of Internet list server groups can sometimes stray off topic (ex. politics, religion) and can cause arguments and unneeded stress. Resources in Hamilton CountyThe following are resources in Hamilton County and the Greater Cincinnati Area that provide support groups and family-to-family resources: The Arc Hamilton County1821 Summit Road Autism Society of Greater CincinnatiP.O. Box 43027 Down Syndrome Association of Greater Cincinnati644 Linn Street, Suite 408 Epilepsy Foundation of Greater Cincinnati895 Central Avenue, Suite 550 Family Resource CenterCincinnati Children's Hospital Medical Center Family ResourcesHamilton County Board of DD Interface ProgramUniversity Affiliated Cincinnati Center for Developmental Disorders (UACCDD) Mental Health Association of the Cincinnati Area2400 Reading Rd, Suite 412 Mothers of Special Children of Greater Cincinnati(Monthly support group that meets at Hyde Park Bethlehem United Methodist, Oakley) Special Needs Resource DirectoryParent/Caregiver Support Groups Resources for the rest of the familyResources for SiblingsRight now, there are no sibling support groups in Hamilton County. If you are interested in starting a group, the Ohio SIBS organization can provide assistance. Visit the Ohio SIBS Web site at www.ohiosibs.info/ for contact information and to learn more about the Ohio SIBS program.
Resources for Fathers and Grandparents
Resources about grievingWhen you have a child with a disability, you experience different types of grief throughout your child's life. Different grieving emotions you might feel are: denial, anger, despair, shock, mourning, confusion, and guilt. That last emotion - guilt - is something that many families struggle with. Guilt can be felt for many different reasons:
Each person handles the grieving process in different ways. Some emotions will come under control one day while others might take a lifetime to overcome. Talking with other families is a very helpful way to help you deal with your emotions. The following resources also provide information about the grieving process:
AcknowledgementsThis publication was produced by Ohio Legal Rights Service, 50 West Broad Street, Suite 1400, Columbus, Ohio 43215-5923. Telephone 614-466-7264 / 800-282-9181 TTY 614-728-2553/800-858-3542 Web site: http://olrs.ohio.gov. Created in 1975, OLRS is an independent state agency and the federal protection and advocacy system for adults and children with disabilities in Ohio. OLRS' mission is to protect and advocate for the human, civil and legal rights of people with disabilities. Ohio Legal Rights Service does not discriminate in provision of service or employment because of race, color, religion, sex, sexual orientation, national origin, military service, disability, or age. OLRS would like to thank the Family Group of Hamilton County for its review and comment. The Family Group is working with OLRS in the development of a single-point-of-entry plan for families who have young children with disabilities. The author of this booklet is OLRS' web site administrator and the parent of Patrick and Matthew. Matthew has multiple disabilities. Related Topics:
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