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from Sumer 1997 issue

Parent Support Groups

by Melissa Thompson, Family Support Specialist, TSBVI Outreach

As I prepared to write this article, I thought back to the time my son, Matthew, was born. The joy of having him was indescribable, yet being a first-time mom felt overwhelming. Taking care of a baby was so demanding, it didn't leave me much time to take care of myself. I felt isolated and exhausted. Much to my benefit, the hospital where I delivered had told me about a new mother's support group there in the hospital. AHHHHHHHH! How refreshing and peaceful it is to me to think about it now. The support given to me by the other mothers in the same situation helped me in my transition to motherhood.

Having worked with families who have children with disabilities, I have seen how families experience great emotional turmoil and deep chasms of pain. A lot of families suffer, but they may not all have the strength to do something about their needs. As is human nature, there may be fear in acknowledging the need to themselves. To me, a family demonstrates its strength and caring by reaching out to others. Numerous books point out that a healthy family trait is recognizing the need for help and seeking it out. Fact is, everyone will at some point need help—everyone needs support from a spouse, a mother, brother, friend, Rover, Father John, etc. The social worker in me also remembers how one of the basic human needs is the need for socialization. This is especially true for parents of children with disabilities. One powerful outlet of support to help meet this need is a parent group.

I have a deep belief in the value of parent support groups because they offer many advantages. When families with the same concerns meet, it can provide mutually needed information and emotional support. There is a sense of community, understanding, a place to laugh about the same things, talk about problems, and help each other. Being able to talk openly with others in the same situation can help you brainstorm for realistic, pragmatic solutions and is often exactly the support you need. The groups I have been able to observe provided a dual role of having an educational and therapeutic focus, thereby meeting many needs of the parent. Most importantly, parents can help each other to "renew their spirit, determination, and enthusiasm for life," (Ripley, 1993) helping life run more smoothly.

Another advantage is the diversity of functions a group can serve. The Parent Support Groups module developed by the California State Department of Education lists the following functions of a Parent Support Group:

As a matter of fact, I received a phone call just this past week from a mother who just wanted to talk to another parent. From my own experience with support groups, there are some questions you should ask yourself that will help you find the best group to meet your needs (borrowed and adapted from an article by Suzanne Ripley with the NICHCY, June, 1993):

1. What are your personal needs? Do you want to know other families who have a child like yours? Are you looking for moral support or advocacy training? Do you need a course in sign language or a play group for your two-year-old? Are you interested in becoming involved in local decision-making processes for school and disability issues? Are you interested in hearing speakers on special education and disability topics?

2. What parent groups are available in your community? To help you get "hooked-up", a list of active national and regional groups is included at the end of this article. A great place to start is by talking to your local TCB caseworker to find out what groups are active in your area. If you do not have a caseworker, check with the special education staff at local schools, preschool, early intervention programs, the social service department at the children's hospital, the vocational rehabilitation programs, or the group home programs. Be sure to explore groups of parents with children of varying disabilities as well. For example, there may not be a group for parents of children with visual impairments, but there may a group for parents of children with cerebral palsy or other disabilities. Also, look in the phone book under the specific disability or in the yellow pages under Disability Service. Remember that it is what a group does that is important, not what it is called. Finally, contact the NICHCY at 1-800-695-0285 for a State Resource Sheet or us at TSBVI Outreach at 1-800-TSB-KARE for more information.

3. What kind of a "joiner" are you? Are you comfortable with formal organizations or do you prefer less structure? How involved do you want to be? You can always attend meetings once or twice before becoming a member. Remember, sometimes the best way to become involved is to volunteer to take a role in some activity. By participating, you will get to know other members and learn more about the goals and functions of the organization.

4. Assess the need to start a new group. Many times there is no local group that meets your family's needs, particularly in smaller rural communities. Remember, you do not have to be a part of a formal group in order to reap the benefits. A simple one-to-one friendship over a cup of coffee or a picnic with one other family in your community can be mutually beneficial.

While it may be worthwhile to join a faraway group to get its newsletter or other information by mail, you may still want to have a group of local people within your community to address the needs you have identified. If the need for a 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! The sample letters in Tables 1, 2, and 3 adapted from How to Organize an Effective Parent Group & Move Bureaucracies may help you begin.

Here's how to get your parent group started (from Guidelines to a Parent Support Group):

a. Compile a directory
b. Have an informal "Get Acquainted Party"; this is most successful at someone's home. Be sure to decide on the date for the next meeting.
c. Have a formal meeting. Become organized by electing officers, if necessary. Decide when, where, and how often the group will meet, allow time for discussion among parents about their children, plan future meetings that include speakers on topics of interest, and discuss fund raising projects and childcare.

Significantly, the role of the professional in parent support groups cannot be emphasized enough. The California module reports that "One third of self-help groups are started with the help of professionals." The California Self-Help Center has developed the following list of the roles professionals may take in relation to self-help groups:

It is recommended that professionals who want to start a support group gain experience by becoming a member of a support group themselves or by sitting in on some open support group meetings.

Finally, it is worth noting that there may be families in your community who are not fluent in English and who have children with disabilities. Through the years, I have discovered that these families lack the ordinary means of support that you and I take for granted simply due to a language barrier and cultural differences. You will probably find that they, too, will be interested in the support available from other parents, but may not be comfortable in an English-speaking group. In this case, remember the following:

As I faced motherhood, I knew that I could choose to continue to feel alone, overwhelmed and frustrated or I could join others who were also experiencing the same circumstances and emotions to improve my situation. The best decision I made was to join a support group.


Table 1 - Sample letter to inform other parents of your desire to start a parent support group.

Adapted from "How to Organize an Effective Parent Group and Move Bureaucracies".

CALLING ALL PARENTS OF CHILDREN WITH VISUAL IMPAIRMENTS AND DEAFBLINDNESS!

A special meeting is being called to organize a Parent Group at Our Town School.

DATE: October 1, 1997
TIME: 6:00 - 7:30 p.m.
PLACE: Our Town Public Library Conference Center

ISSUES TO BE DISCUSSED: Educational programs for the a child with visual impairments or deafblindness

COME TO THE MEETING AND SHARE YOUR OPINIONS!

For more information call: Joe and Jane Deer at 555-0000 or Sally Smith at 555-1111.


Table 2 - A notice for organizations trying to develop local support groups may be placed in a newsletter or posted on bulletin boards in various public buildings. Adapted from "How to Organize an Effective Parent Group and Move Bureaucracies".

Parents of Children with Visual Impairments and Deafblindness,

If you would like to know more about the Council for Children with Visual Impairments . . .
If you would like the Council to help you organize a parent group . . .
If you would like to work with the Council to get better services for the children in Our Town with visual impairments . . .
The Coordinating Council for Children with Disabilities would like to meet you.

Call: Harry Helper, Caseworker for the Council for Children with Visual Impairments
(555) 555-2222 between the hours of 8 a.m. and 5 p.m. or
(800) 555-2222 to leave a message after 5 p.m.

You may also contact us by mail at :
Coordinating Council for Children with Visual Impairments
95 Work Road
Our Town, Texas 00000


Table 3 - Existing parent groups may want to notify parents each year of their group's efforts in order to keep the membership growing. Adapted from "How to Organize an Effective Parent Group and Move Bureaucracies".

Dear Parents:

Welcome to the Our Town Parent Group! Last year we had a very active parent group at Our Town Elementary and many have expressed an interest in carrying on this tradition. We would like to start by inviting you to become a part of the school directory. This will allow parents to keep in contact with one another. Also, some parents expressed an interest in having speakers invited in to talk with parents.

Please take time to fill out the form below and send it to Principal Nance. Following the directory form is a listing of suggested topics for speakers. Please check those that you might be interested in hearing. Also, if you have any additional suggestions, please add them to the bottom of the listing.

DIRECTORY:

Parents name: _________________________________________________________
Address: _____________________________________________________________
Telephone: ________________________
Child(ren)'s name attending Our Town Elementary: ______________________________
Other children's names: ___________________________________________________
Subjects of interest:
_____ Speech therapy ______ Hearing problems ______ Respite care
_____ Play therapy ______ Grieving process ______ Parenting skills
_____ Vision problems ______ Eating problems ______ Orientation & mobility

Let's all work together and make a strong parent support group. A good parent group can meet needs that cannot be met anywhere else. We have all been there and we understand in ways that are impossible for anyone else. WE NEED EACH OTHER!

Jane Doe, Our Town Parent Group President


Table 4 - Active parent support groups and informational / resource organizations

National

National Parent to Parent Support and Information System
PO Box 907
Blue Ridge, GA 30513
1-800-651-1151 (voice/TTY)
(706) 632-8822 (voice/TTY)
(706) 632-8830 (fax)
http://www.nppsis.org

National Organization of Parents of Blind Children
1800 Johnson St.
Baltimore, MD 21230
(410) 659-9314 (voice)
(612) 696-1975 (BBS)
(410) 685-5653 (fax)
http://www.nfb.org

Parents of Blind Children, Committee on the Blind, Multiply-Handicapped Child
1912 Tracy Rd. Northwood, OH 43619
(419) 666-6212

STATE / REGIONAL

Deaf-Blind Multihandicapped Association of Texas (DBMAT)
815 High School Dr.
Seagoville, TX 75159
(214) 287-1904

Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) & Visually Impaired Children's Program
4800 North Lamar
Austin, Texas 78756
1-800-252-5204
(512) 459-2549

Partner's Resource Network - PATH Project
1090 Longfellow
Beaumont, TX 77706-4889
(800) 866-4726

Austin

The BDSRA Texas Chapter
Batten Support Group-Austin Area
Contact: Ms. Florence Petri at (512) 335-0589

Pilot Parent of Austin - ARC of the Capitol Area 2818 San Gabriel
Austin, TX 78705
(512) 476-7044

Abilene
TCB VI Teen Support Group (Middle & High School) Abilene Area
Contact: Lori Lawson at (915) 672-1385

Beaumont
Parent support group meets the Third Thursday of the month from 2:00 p.m. to 3:30 p.m. at the Park Dale Mall (St. Elizabeth Resource Room)
Contact: Edna Osborn, VRT at (409) 838-5201

Corpus Christi
Coastal Bend Area Council for the Blind (Macular Degeneration)
Contact: Jane Mims at (512) 992-6596

Texas Association of Retinitis Pigmentosa
Contact: Dorothy Stiefel (512) 852-8515

For more information on other groups contact:
Dr. Sandra Fox
5866 S. Staples #102
Corpus Christi, Texas 78413
(512) 993-8063

El Paso
TCB & West Texas CM Project
(Spanish-speaking support group for parents of children with multiple disabilities) Meets every Thursday from 9 - 11 a.m. at the TCB office located at 1314 Lomaland Dr.
Contact: Agueda Contreras (915) 592-0895 or Jaime Barceleau at (915) 545-6763.

Fort Worth
Our Special Children for parents of children with developmental delays, meets the second Saturday of every month from 9:30 - 11:30 a.m. at the Cooks Children's Medical Center.
Contact: Emma Bell at (817) 265-6009.

Alexander Vision Resource Center has meetings the third Friday of the month (except in July and December) at the Cooks Children's Medical Center for parents of children who are diagnosed with a vision loss . Contact: Cathie Reed at (817) 885-4498.

El grupo La Familia se junta cada segundo Sabado del mes 12 - 2 p.m. en el Cooks Children's Medical Center. Llame: Emma Bell (817) 265-6009.

Houston
Houston Association of Parents of the Visually Impaired
Contact: Alison Rickerl at (713) 286-9820 or Kim Joiner at (713) 482-8131.

Liberty
Parents of Visually Impaired/Multiply Disabled Children
Contact: Rod & Glenda Hellyer at (409) 336-2723.

Lubbock
TCB & LISD Vision Support Group for students (elementary- high school ages).
Contact: (806) 766-0877

Mt. Pleasant
Consumer Support Group (for individuals with visual impairments) meets the third Monday of the month at 601 Start Dr. at 2 p.m.
Contact: Roger Purdy or Twyla Durmmond-Moore at (903) 831-3846.

Odessa/Permian Basin
Parent and Student Support Groups meet bimonthly during the school year.
Contact: Tamee Argo at TCB (800) 687-7034.

Port Arthur
The Arthur Smith Support Group for the Visually Impaired meets the second Wednesday of the month from 1-2:30 p.m. at the Collins Senior Housing Apartment Complex.
Contact: Jeffrey Girard at (409) 838-5201

Rio Grande Valley
Rio Grande Valley Parent Support Group (parents of children with visually impairments including those with additional disabilities) meets quarterly at the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) in Pharr.
Contact: Rose Shotts at (210) 787-7364.

San Angelo
TCB Parent Support Group meets quarterly.
Contact Vicki Hardin at (915) 949-4601 or email vickipage@TCB.state.ts.us

San Antonio
Alamo Area Association of Parents of the Visually Impaired.
Contact: Kim Pulis at (210) 590-1464.

Texarkana
American Council for the Blind meets the fourth Sunday of the month at 2 p.m.
Contact: Estell Merrill at (903) 838-6023.

Tyler
HUGS (Help Us Give Support) Community Support Group for Parents of Children with Special Needs
Contact: Barbara Farnum at St. Louis School in Tyler - (903) 531-3835.

Wichita Falls
Family Support Group
Contact: Candy Hickman at (904) 691-8675 or the TCB office in Wichita Falls.

NATIONAL

Association for Education and Rehabilitation of the Blind & Visually Impaired (AER)
206 North Washington St., Suite 320
Alexandria, VA 22314
(703) 548-1884

Council of Citizens with Low Vision International 6511 26th W.
Bradenton, FL 34207
1-800-317-2258

Council on Families with Vision Impairments
6212 W. Franklin St.
Richmond, VA 23226
(804) 288-0395

National Association for Parents of the Visually Impaired
PO Box 317
Watertown, MA 02272-0317
1-800-562-6265
(617) 972-7444 (fax)
http://www.spedex.com/NAPVI/

National Association for Visually Handicapped
22 W. 21st St. 6th Floor
New York, New York 10010
(212) 889-3141
(212) 727-2931 (fax)
http://www.navh.org

National Family Association for Deaf-Blind
111 Middle Neck Road
Sands Point, NY 11050
Voice: (800) 255-0411, extension 275
TTY: (516) 944-8637
Fax: (516) 944-7302

National Father's Network
The Merrywood School
16120 North East Eighth St.
Seattle, WA 98008
(206) 747-4004
(206) 282-1334
http://www.fathersnetwork.org/

Natinoal Information Center for Children and Youth with Disabilities
NICHCY
P.O. Box 1492
Washington, DC 20013-1492
1-800-695-0285 (V/TTY)
(202) 884-8200 (V/TTY)
E-mail: nichcy@aed.org
URL: http://www.nichcy.org

National Organization on Disability
910 16th St. NW, Suite 600
Washington, DC 20006
1-800-248-2253
(202) 293-5960

Editor's Note: There are also many disability specific national level support groups. Each year in the January edition of Exceptional Parent Magazine an extensive listing of these organizations, as well as parent-to-parent support organizations is published. This magazine also offers, in each edition, a section for parents to write in to contact other parents of children with specific disability issues. Additionally, there are a number of Internet Websites that offer a new vehicle for support and information. Some that you may want to check out include:

The Family Village
http://www.familyvillage.wisc.edu/  

Our Kids
http://www.our-kids.org

Sibshop
http://www.chmc.org/departmt/sibsupp/

The Beach Center of Families and Disability
http://www.lsi.ukans.edu/beach/beachhp.htm

The ARC of the United States
http://TheArc.org/welcome.html


BIBLIOGRAPHY

Accessing Parent Groups. National Information Center for Children and Youth with Disabilities, Post Office Box 1492, Washington, D.C., 20013-1492.

Dawson, S. and Terrien, A. Another parent knows: Peer support to parents of children with disabilities. Grand Junction, Colorado: Effective Parents Project, Inc., 1986. (Effective Parents Project, Inc., 930 UTE Ave., Grand Junction, Colorado 81501).

Doyle, M. and Straus, D. How to make meetings work. New York, NY: The Berkeley Publishing Group, 1976.

Dugannne, M.A., Ferrera, M. and Justice T. Educators and parents working together to develop special education parent support groups. Sacramento, CA: Special Education Resource Network, 1986. (Resources in Special Education, 650 University Ave. Room 201, Sacramento, CA 95825).

Exceptional Parent Magazine: the 1997 Resource Guide. Exceptional Parent, P.O. Box 3000, Dept. EP, Denville, N.J., 07834.

How to organize an effective parent group & move bureaucracies. Co-ordinating Council for Handicapped Children, 1971, 407 South Dearborn, Chicago Illinois 60605.

McKay, M., Davis M., and Fanning, P. Messages, the communication skill book. Oakland, CA: New Harbinger Publications, 1983.

Meyer, Donald J. & Vadasy, Patricia F. Grandparent Workshops: How to organize workshops for grandparents of children with handicaps. University of Washington Press, 1986.

Meyer, Donald J., Vadasy, Patricia F., and Fewell, Rebecca R. Sibshops: A handbook for implementing workshops for siblings of children with special needs. University of Washington Press, 1985.

Meyer, Donald J., Vadasy, Patricia F., Fewell, Rebecca R., & Schell, Greg C. A Handbook for The Father's Program: How to organize a program for fathers and their handicapped children. University of Washington Press, 1985.

Nathanson, Minna N. (1986). Organizing & Maintaining Support Groups for Parents of Children with Chronic Illness and Handicapping Conditions. Association for the Care of Children's Health.

Parents helping parents and other parent support activities. National Information Center for Handicapped Children and Youth (NICHCY), Post Office Box 1492, Washington, D.C. 20013.

Parent Support Groups. California State Department of Education Special Education Division Program, Curriculum and Training Unit, Post Office Box 944272-Room 621B, Sacramento, CA, 94244-2720.

Poyadue, F. Steps to starting a peer support organization. Parents Helping Parents, 535 Race Street, Suite 220, San Jose, CA 95126.

Self-help/mutual support groups resource catalogue. California Self-Help Center, UCLA, 2349 Franz Hall, Los Angeles, CA 90024.


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from Sumer 1997 issue

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