Resources for Families and Children with Disabilities


Written by: CEHD Communications Staff
Post date: November 20, 2012

For families raising a child with a developmental delay or disability, information and emotional support are critical. In addition to the emotions and concerns regarding their child’s future, parents also have to face the challenging task of learning about and explaining the child’s disability.

In 1999, Robin Battle and a group of Brazos Valley area parents joined together to create a grassroots advocacy and support group. The group, Parents of Children with Special Needs, began holding meetings to strengthen knowledge about disability, share resources, and improve communication among parents, professionals and educators in the area.

This group evolved into the Family Support Network (FSN) when former special education teacher, Amy Sharp, Ph.D., collaborated with the group with the support of Texas A&M University to create a formal organization in 2002.  The FSN has since become a part of the Center on Disability and Development at Texas A&M University.

“The enthusiasm and drive of Robin Battle and other local parents illustrated the epitome of a grassroots effort; we just helped bring more structure to the existing organization,” said Sharp.
The Family Support Network continues to serve families in the Brazos Valley who have children with disabilities and are seeking information, support, and skills to make informed decisions about the development and education of their children.

While Dr. Sharp offers her expertise by phone, email, and in-person consultations, the FSN mainly helps families locate local, statewide, national, and online resources that improve the lives of their children and the family unit.  The FSN provides assistance through the website (http://fsn.tamu.edu) and via the organization’s e-newsletter that reaches nearly 550 families, educators and professionals each month.  The e-newsletter also shares parent training and other special events held regionally.

“The FSN e-newsletter is a great resource for anyone supporting people with a disability because we share resources on early childhood, education, health, transition, aging, technology and more -- anything that comes across our desk that is relevant is included,” said Sharp.

The FSN website offers national, statewide, and local area resources and information about support groups, activities and events for children with disabilities and their families.

Camp LIFE

One of the more popular events Family Support Network supports is Camp LIFE (Leadership, Independence and Friends through Experiences).  Camp LIFE, now in its ninth year of operation, is a fully inclusive weekend camp for children with disabilities and their siblings. Held twice a year at the barrier-free facilities of Camp for All in Burton, Texas, Camp LIFE provides a ropes course, archery, swimming, horseback riding, and more. Children with disabilities between the ages of 5 and 21 and their siblings are eligible to attend Camp LIFE.

“Camp LIFE was created to promote an inclusive environment for all kids. We accept all children and all disabilities as long as we are able to support their needs,” said Sharp. “ We have had kids with a variety of special needs including, but not limited to, autism, cerebral palsy, Down syndrome, epilepsy, intellectual disabilities, visual impairments, hearing impairments and spina bifida.”
Camp LIFE gives campers the choice to participate in every activity kids would find at a traditional sleepover camp.  Campers are encouraged to participate as fully as they choose to; some campers find themselves doing more than they ever anticipated.

“I was afraid of heights before I got (to Camp LIFE). I saw other kids climb the wall, and they could do it – even if they can’t walk,” said 8-year-old camper, Colin M. of College Station.  “I decided not to be afraid anymore. And I climbed that wall like a monkey and ziplined down. It was like I was flying.”

Campers each have one-on-one counselor interaction that ensures each child receives the support he or she needs to fully participate in the activities of their choice. Sibling campers learn more about their siblings and enjoy an extra dose of attention.

Camp LIFE also provides a weekend of respite for parents. Parents drop their children off to the trained counselor ‘buddies’ that include pre-service special education teachers, multi disciplinary TAMU students, and other professionals experienced in the field of disability. There is also a healthcare professional on-site to care for any medical or pharmaceutical needs the children have.
For the first time, in Spring 2013, Camp LIFE will open the facilities to the entire family. After visiting with several area families, Dr. Sharp discovered that families with children who have a disability also seek out experiences the whole family can enjoy together.  Families interested in the upcoming Family Camp can subscribe to the FSN e-newsletter to receive more details.

Training for Families, Educators and Professionals

Throughout the year, the Family Support Network offers a variety of trainings intended for parents, teachers, and professionals on different topics related to disability.
This past September, the FSN, in collaboration with several area experts in different fields, organized a seminar series titled “Tuesday Talks.” Tuesday Talks is a monthly series of presentations held on the second Tuesday of each month. Conversational in style, attendees can benefit from a presentation with time afterwards for questions based on their personal situations.  Those interested can attend the seminar in person or live via-stream online.  The seminars are free to attend.  Upcoming topics include: Sexual Health and Education (December), Behavior Management (January), and Everyday Inclusion (February).  Seminars begin at 11:30a.m. More information can be found on the FSN website at http://fsn.tamu.edu/.  Reservations are encouraged.
The Family Support Network also organizes an annual disability resource fair in collaboration with the two local school districts and other organizations.  The fair is free and open to the public. Dozens of disability-related vendors and services are there to share information, and the fair features product showcases and informational seminars.

Support Groups

Reliable information and healthy emotional support are essential tools to families of children with special needs.  While family and friends may provide much needed “backup” in many areas, no one can offer the understanding, advice, and information as well as other parents who share similar situations. Support groups allow parents to discuss disability-related challenges, compare services, share heartaches and victories, and even vent frustrations. The FSN offers a guide to finding a support group that is right for a family’s needs.

The Bryan-College Station area offers many different resources and groups for families supporting a loved one with a disability, but they can be difficult to find.  Fortunately, area families don’t have to look very far to find access to local, statewide, and national disability-related activities and resources through the Family Support Network at Texas A&M.

About the Family Support Network: The Family Support Network at Texas A&M University is a resource center for families in the Brazos Valley who have children with disabilities and who come together to learn about disability issues and share information. The Family Support Network’s goal is to help families obtain the information, support and skills needed to make informed decisions. The Family Support Network is a project of the Center on Disability and Development at Texas A&M University. Parents and caregivers interested in finding out more information about upcoming events can visit http://fsn.tamu.edu  or call (979) 846-4612.