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Working With Families of Children With Special Needs

This lesson will highlight the ways in which you can play a significant role in supporting families of children with special needs in school-age programs. You will learn recommendations for effective collaboration with families and other professionals and begin to understand the additional roles and responsibilities placed on many families of children with special needs.

Objectives
  • Explore own assumptions about working with families of school-age children with special needs.
  • Identify variables that support family-centered practice.
  • Choose effective ways to support families of school-age children with special needs.

Learn

Know

Families of School-Age Children with Special Needs

School-age children with special needs are members of our community, programs, and families and it is our responsibility to provide the same enriching before- and after-school care that their peers receive. While families with children with special needs often experience additional situations and stressors, they have hopes, dreams, and concerns for their children just like other families. You can positively impact families with school-age children with special needs by empowering them with knowledge, empathizing with their feelings, and collaborating with other support professionals in their lives.

Working with Families of Children with Special Needs

Establishing meaningful relationships with families is a critical part of your work, and your communication is especially important when working with families with school-age children with special needs. While many families with school-age children are familiar with their child’s learning needs and the types of support available, they can still be overwhelmed by what feels like a constant flow of suggestions and appointments to help their children learn and develop. Families’ and children’s needs evolve as children with special needs grow older, and families may turn to you, or others in your program, for assistance with connecting to services or agencies outside of your program. It may be helpful to form relationships outside agencies so you, or trainers and administrators in your program, have up-to-date information on how to make a referral and the types of services offered. Positive interactions with families and other professionals can decrease families’ stress and improve their well-being.

Families with school-age children with special needs may be collaborating with a variety of other support professionals such as intervention specialists (i.e. special education teachers), related services personnel, and behavior analysts. Families may access support and services for school-age children through schools, medical facilities, and community organizations. Children who receive special education through their school will have an individualized education program (IEP). You, or someone in your program, may be asked to collaborate with other professionals to create consistency between the support children receive at home, in school, and in before- and after-school care. Working with professionals from outside agencies and programs helps things run smoothly for families and ensures that all the professionals and caregivers in a child’s life are communicating. This lessens family stress by reducing the need for primary caregivers to act as the in-between messenger of important information.

The first step to establish strong relationships with families of children with special needs is to spend time discovering their wishes and concerns for their children and to learn about the meaningful activities they participate in at home. It can be helpful to ask families for input on how they support their children, especially for children with special needs. Through your interactions you can build trust so both you and families feel comfortable sharing children’s strengths and concerns. Before communicating concerns with families, it may be helpful to discuss with a coach, trainer, or administrator your plan to share this information using family-centered practice. Be prepared for families to interact in a variety of ways, and know how you can support if they choose to take specific steps or access other agencies and resources. Ongoing communication with families and the supportive professionals in their lives creates consistency between the various environments children spend time.

In your collaboration with families acknowledge and respect their strengths and unique background, while realizing their ability to make the decisions that are right for them. This means that when family wishes and decisions are different from what you would recommend, you will respond to the family’s decisions with respect. Ultimately, meaningful communication and relationship-building will enrich the process for both yourself and families.

Take a look at the following guidelines that reflect family-centered practice. You may remember some of these from Lesson 1. Then, think about which of these you can use in your work with families of children with special needs:

  • Recognizing the family as a constant in the child’s life; caregivers and service systems may come and go
  • Facilitating collaboration between families and professionals
  • Honoring and respecting family diversity in all dimensions (cultural, racial, ethnic, linguistic, spiritual, and socioeconomic)
  • Recognizing family strengths and the different approaches that families may use to cope
  • Sharing unbiased and honest information with family members on an ongoing basis
  • Encouraging family-to-family support and networking
  • Acknowledging and incorporating the developmental needs of the child and other family members into your practice
  • Designing and implementing services that are accessible, culturally and linguistically respectful and responsive, flexible, and based on family-identified needs

See

Working with Families of Children with Special Needs

Watch this video to learn about addressing the needs of families who have children with special needs.

Do

There are many ways you can demonstrate respect and consideration for families of children with special needs in your program. Consider the following:

  • Acknowledge that families know their child best and ask them questions about services or resources that may be helpful to you.
  • Establish ongoing communication between home and the school-age program. Communication journals are a great way to maintain communication. These are usually sent home with the child and returned the next day. Staff can share noteworthy observations or events, and families can respond to those or share their own news or reflections. Journals can be an especially valuable tool in establishing consistency between home and school-age program environments for children with special needs.
  • Incorporate children’s books in your program library that reflect consideration of multiple abilities and differences.
  • Invite children to share about their disability if they feel comfortable. For example, a child may feel comfortable talking with you or a few friends about her use of adaptive equipment (e.g., braces, wheelchair, or a communication device). This also promotes acceptance of differences.
  • Be a team player! Work collaboratively with families and other professionals who may be involved in the delivery of services to children with special needs.

If disagreements or miscommunication arise, consider the following:

  • Remind yourself that your role is to support families’ hopes and dreams for their child.
  • Be patient. Raising a child with special needs may be challenging at times, and family members need time to navigate this experience at their own pace.
  • Avoid making judgments for families and their children.
  • Consider difficult times as opportunities to build trust between yourself and families.
  • Question your assumptions about working with families of children with special needs and urge other professionals you know to do the same.
  • Talk with your trainer, supervisor, or coach when in doubt about any aspect of your work with families.

Family Members Share Perspectives

Watch this videno to hear a family of a child with special needs share their school experience.

 

Explore

Complete the following activities on Reflecting on Families of Children with Special Needs and Using Family-Specific Language. Write down some of your reflections, and share your thoughts with a coach, trainer, or administrator.

Apply

Use the resources in this section to learn more about supporting families of children with special needs in your care. You may also want to share some of these resources with families. Use the handout, Useful Resources for Families and Professionals to learn more about ways to support families of children with special needs. Think about how the information in The Emotional Experiences of Families of Children with Disabilities will impact how you view families and respond to their decision and behaviors.

Glossary

INDIVIDUALIZED EDUCATION PROGRAM (IEP):
Written education program for special education (IDEA Part B) that lists educational goals, services, and accommodations for eligible children ages three to twenty-one
LOCAL EDUCATION AGENCIES:
Publicly-funded school districts
RELATED SERVICES:
Including but not limited to the following services: speech-language therapy, audiology, interpreting, psychological, physical therapy, occupational therapy, recreation, counseling, orientation and mobility, medical services, nursing, social work, parent counseling and training
SPECIAL EDUCATION / IDEA PART B:
Federal program implemented by local education agencies to provide services and accommodations to eligible students with educational disabilities ages three and older

Demonstrate

Finish this statement: Encouraging family-to-family support and networking reflects…
Which is not an appropriate way to communicate with the family of a child with special needs?
True or false? As a school-age program staff member, it is not important for you to reflect upon your thoughts and assumptions about families of children with special needs.
References & Resources

 

Barrera, I., & Corso, R. M. (2003). Skilled Dialogue: Strategies for responding to cultural diversity in early childhood. Baltimore, MD: Paul H. Brookes Publishing.

Center for Parent Information & Resources. (n.d). Supporting the Parent Centers Who Serve Families of Children with Disabilities. Retrieved from https://parentcenterhub.org/

Hanson, M. J., & Lynch, E.W. (2004). Understanding Families: Approaches to diversity, disability, and risk. Baltimore, MD: Paul H. Brookes.

Harry, B., Kalyanpur, M., & Day, M. (1999). Building Cultural Reciprocity With Families: Case studies in special education. Baltimore, MD: Paul H. Brookes Publishing.

Harry, N., Rueda, R., & Kalyanpur, M. (1999). Cultural reciprocity in Sociocultural Perspective: Adapting the normalization principle for family collaboration. Exceptional Children, 66(1), 123-136.

Howard, V.F., Williams, B.F., Port, P.D., & Lepper, C. (1997). Very Young Children With Special Needs: A formative approach for the 21st century. Upper Saddle River, NJ: Merrill.

Johnson, B. H. (1990). The changing role of families in health care. Children’s Health Care, 19(4), 234-241.

Kalyanpur, M., & Harry, B. (1999). Culture in Special Education: Building reciprocal family-professional relationships. Baltimore, MD: Paul H. Brookes Publishing.

Lynch, E. W., & Hanson, M. J. (2004). Developing Cross-Cultural Competence: A guide for working with young children and their families, 3rd ed. Baltimore, MD: Paul H. Brookes.

National Association for the Education of Young Children (2011). NAEYC Position Statement: Code of ethical conduct and statement of commitment. Retrieved from http://www.naeyc.org/positionstatements/ethical_conduct

National Association for the Education of Young Children. Engaging Diverse Families. 

Peck, A., & Scarpatti, S. (2002). Special Education around the world. Teaching Exceptional Children 34(5).

Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family Quality of Life: A qualitative inquiry. Mental Retardation, 41(5), 313-328.

Salend, S. J., & Garrick-Duhaney, L. M. (2002). What Do Families Have to Say About Inclusion? How to pay attention and get results. Teaching Exceptional Children, 35(1), 62-66.

Trivette, C. M. & Dunst, C. J. (2005). DEC Recommended Practices: Family-Based Practices. In S. Sandall, M. L. Hemmeter, B. J. Smith, & M. E. McLean (Eds.). DEC Recommended Practices: A comprehensive guide for practical application (pp. 107-126). Longmont, CO: Sopris West.

Turnbull, A. P., Turbiville, V., & Turnbull, H. R. (2000). Evolution of Family-Professional Partnerships: Collective empowerment as the model for the early twenty-first century. In J. P. Shonkoff & S. J. Meisels (Eds.). Handbook of Early Childhood Intervention (pp. 630-650). Cambridge, United Kingdom: Cambridge University Press.

Turnbull, A., Turnbull, R., Erwin, E. J., & Soodak, L. C. (2006). Families, Professionals, and Exceptionality: Positive outcomes through partnerships and trust. 5th ed. Upper Saddle River, NJ: Pearson Education Inc.