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Our Programs
Our Programs can be helpful to individuals and families who are looking to meet others to network and exchange information, provide and receive mutual support, socialize themselves and loved ones.
Introduction
Individuals with, and/or individuals and families with an individual with a disability have special concerns and often need a great deal of information: information about the disability, about school services, therapy, local policies, funding sources, transportation, medical facilities, and much more. Many individuals and individuals and families find it very useful to join an autism support group, where they can meet other individuals and families with similar needs. Support groups can serve many purposes, but primarily they offer parents a place and a means to share information, give and receive emotional support, and work as a team to address common concerns.
There are different kinds of programs and activities - support groups, social get-together, social activities...and their activities vary, depending on the program's focus and goals. Typical activities might include: providing mutual support and new friendships, distributing information and/or newsletters, creating a resource center, arranging for speakers on topics of interest, and setting up babysitting coops or respite care provision. Many support groups also allow individuals and families the opportunity to speak in a unified voice to express the needs and goals of a special interest group not often well represented in the school and community.
An important function of nearly all support groups is to introduce individuals and families to others like themselves, who can provide much needed information and emotional support. When individuals and families with similar concerns meet, there is a sense of community, of understanding; you create a place where you can laugh about the same things, where you can discuss the same problems, where you can help each other. Where else can a parent find out which local dentists are good with children who don't sit still, where to buy specialized clothes, toys, or equipment, how to help a teenager find a summer or after-school job, or how to fill out a social security application?
Support Group FAQs
Q: What are support groups?
A: Support groups are, very basically, a group of people (separate individuals and family members, friends and/or others concerned) who are concerned with disability issues. Some support groups also include participants who are not parents of children with disabilities, such as educators, medical professionals, social services people, policymakers and others interested in the same issues. For the purposes of this discussion, the term ‘support group’ will be used for all groups serving the needs of individuals and families of someone with a disability, however diverse their membership may be.
Q: What sort of help can participants really offer each other?
A: There are many ways in which participants, as a group, can help each other. For example, support groups can provide participants with information on medical or educational services, programs, and other resources available within the community, county, state, or nation. The group can invite speakers who are experts on a wide variety of topics to speak at their meetings, or produce a newsletter concerning local services, events, school policy, and state policy. This information is invaluable for "new individuals and families" who have just learned of the disability and continues to be useful to individuals and families as their needs change through the years.
Within the group, participants can also be open about their fears and concerns. There is a great benefit in learning that there are other individuals and families going through the same kinds of situations. Individuals and families join support groups to end the sense of isolation their unique situation can create. Often, individuals and families in atypical situations find that traditional sources of help are unable to understand their particular needs or to help them solve problems. By expressing their concerns and problems to other like themselves, individuals and families can get reactions and advice from others who may have experienced similar situations or needs. They can share the daily coping techniques that help keep individuals and families together, as well as tips that can make life run more smoothly. Participants can help each other to renew their spirit, determination, and enthusiasm for life. Being able to discuss concerns with others in the same situation can bring about realistic, pragmatic solutions and is often exactly the support individuals and families need.
Support groups also serve other important needs and offer several advantages. For example, as a group, participants can form a united voice like any other special interest group. In this united voice, they can then present their concerns to school or agency administrators and community leaders.
Q: What kinds of support groups are there?
A: Support groups vary on the basis of what binds them together. There are groups which deal with only a single or one type of disability. There are groups whose participants are all involved with the same school or same program in a school. There are groups whose participants all live in the same geographic area or who all want to learn more about the special education process, service and support programs and their rights. Support groups are also formed based upon specific goals participants would like to accomplish. In general, the goals of support groups are to obtain direct services for individuals and families, mutual support, training, advocacy, and communication.
For example, a support group may be formed to fill gaps in services. A group may establish a child care program for young children with disabilities or open a group home for young adults seeking more independence. Organizations like FLAWsome! are useful for people who are looking for understanding and practical ideas about raising a child, living independently, or supporting the independence of another with a disability. Such groups connect participants with others who also live with a disability. Support groups whose focus is advocacy organize individuals and families to help ensure a free appropriate public education and equal opportunities for all persons with disabilities.
Many support groups provide parent training that can help parents expand their skills in raising a child with a disability. This training may be in such areas as: understanding the special education system; behavior management; self-help skills (such as toilet training or mobility); working with medical experts; identifying and accessing community services; being your own case manager; and/or learning to access and use adaptive technology effectively.
Some groups have local, state, regional, and/or national offices with sizable membership lists. Some support groups may have as few as three members, but this can still be a workable group. There are groups that are run entirely by volunteers and have no income other than possible membership dues. There are local support groups that have applied for and have received federal, state, or private funding to help pay for staff time, training, development of materials, printing, mailing, and maintaining a post office box or office.
There are large organizations with a full staff of paid workers and budgets that allow for national publications and annual conferences. However, it is not size that determines a group's effectiveness. All groups can play an essential role in providing information and family support and in addressing issues in a collective voice.
Q: How fully should I participate in this and other FLAWsome! programs?
A: When considering participation in one or more avaliable programs, it is helpful to review your personal needs. Are you looking for moral support or advocacy training? Do you want to get to know other individuals and families who face issues or have concerns like you? Do you need a referral to a day-program group for your adult child? Are you interested in hearing speakers on education and disability topics? Are you interested in becoming involved in local decision-making processes for school and disability issues? Would you like to receive a newsletter on disability topics? Do you just want to spend time socially with others, or simply keep in touch with them?
Perhaps most importantly, how much of a commitment do you want to make? Different programs individually require different levels of commitment, with a still higher level required for regular and frequent participation in more than one of them. There is also the possibility of becoming even more involved in the workings of FLAWsome!, as a boardmember, officer, or other volunteer capacity.
The answers to these questions may help you decide which one or more, if any, FLAWsome! program you should participate in. You may need to participate only one program (such as weekly social get-together, monthly support/advocacy meeting, or quarterly social activity to get all that information you need. Or you may need to participate in more than one program, if you have more than one need or interest. For example, you might wish to participate in both the online forums and the in-person programs. These both may provide you with a newsletter concerning local, state and national issues, but one allows more privacy, even anonymity while the other is more upfront and personal, and sometimes even public. The goals of these are different, but together they may meet the variety of needs you have identified for your family.
Ask yourself, what kind of a "participant" are you? Are you more comfortable with formal organizations or do you prefer less structure? Consider the types of groups around you and decide where you would feel most comfortable. In the process of exploring parent organizations, remember that you can always attend one or two meetings before agreeing to join. If you are interested in joining but can't afford the dues, most support groups can offer reduced fee memberships or free membership to those who need it. These are all people who can understand unique situations; talk to them about any special arrangements you might need to participate. Also remember that sometimes the best way to get involved with a new group of people is to volunteer to take an active role in some activity. By being a participant you will meet other members and learn more about the goals and functions of the organization.
Q: What if none of these programs meet my own, and/or my family (member)'s needs, or none exist in my area?
A: Many times no program meets your family's needs. While it may always be worthwhile to join a far-away organization to get its newsletter or other information by e-mail or postal mail, you may still want to have a group of local people to work within your community to address the needs you have identified. When the need for an autism support group is identified, and there are people who want to see such a group in their area, then it's time to get together and start your own organization. This takes work, but it can certainly be done.
Q: How did you decide what kind of programs to create?
A: We started by answering these questions:
• What should be the primary purpose of this effort?
• What other purposes are there?
• What schools, disabilities, age groups, and geographical areas would we cover?
• Who would join this group?
• How will we communicate with or reach these people
• What is the underlying philosophy of the leaders?
• What are our goals? Can we list them in order of importance?
• When do people want to meet?
• How often do they want to meet?
• Where do they want to meet?
• Who will lead the meetings?
• Will we need to raise any money and charge dues or solicit contributions?
In answering these questions, we soon thought of additional questions, but this list should certainly got things focused!
Q: How do I participate in a FLAWsome! programs?
A: There are basically two ways to start an autism support group. You can either affiliate with an existing organization --that is, become a local chapter of a larger association -- or you can start a new group.
Q: How do I participate - and in which program (if any)?
A: Once you have answered the questions above, you should be able to match your goals and needs with existing programs. For example, if your goals are to merely find opportunities for social interaction and relationship development – an opportunity to meet people and make friends, then you might want to participate in ‘the Gathering’ – an informal weekly social get-together, and/or the Quarterly Social activity. This information is on the FLAWsome! Core Programs handout.
If you have identified your goals as involving mutual support between individuals and families together to talk and work together, then you might find it beneficial to participate in the FLAWsome! 'Support-thru-Advocacy' Group. This information is also on the FLAWsome! Core Programs handout.
(In every case, remember, it's useful to think in terms of your or your family’s needs, rather than the specific disability label that has been given.)
FLAWsome! associates, or partners, with local, regional, and statewide organizations, such as the Workshop for Adult Vocational Enrichment (WAVE), the Arc of Florida, and the Florida Self-Advocacy Alliance (FSAA), and can put you in contact with a variety of organizations or people such as social services departments or the special education staff at local schools. You can also look in the phone book under the specific disability or under Disability Services or a similar name (often listed in the phone book in the pages devoted to state and local government).
When you have found a program whose goals and activities are similar to what you'd like to do, contact the program organizer or facilitator and ask how you would go about participating in it. If this group is itself a local or state affiliate of a state or national organization, ask how you join with the national office. Talk to representatives of the organization about assistance they can offer, and about other related resources in your area. This is your first networking activity.
Q: What if Ie decide not to participate in any or all FLAWsome! programs?
A: Even if you decide not to participate in FLAWsome! programs at this time, it will be useful to keep in touch with us and/or with participants with whom you can network. Any established organization, regardless of differing goals, members, or needs, may have people who can help you. For example, the CILs are usually an excellent source of assistance in finding the right disability group. In the same way, any specific disability group will in many ways be structured like other disability groups.
Similarly, we with FLAWsome! see no need to duplicate work that has been, or is already being done. Another organization's information on such topics as disability issues, school policy, state and federal legislation, recreation, summer camps, technology, or parent/professional relations may be useful to you. Make use of information packages, training materials, and newsletters of interest to you, so you can concentrate your resources on those unique needs you have identified.
You may be forming a small and informal group. If, for example, seven individuals and families have decided to meet in their homes, then no formal organization may be needed. You may decide to start a small group which meets informally, has no dues, does not choose officers, and needs no office or post office box. Your group may be successful and small, or it may grow and change its organizational structure.
Q: What do I need to do to participate in FLAWsome!?
A: Once you have considered these questions and talked to us (and others) about your needs, goals, and your ideas for issues to address, it's time to actually get started. See below for contact information.
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