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 challenging situations and stressors, they have hopes, dreams, and goals for their children just like other families. You can positively impact families with school-age children with a disability by empowering them with knowledge, empathizing with their feelings, and collaborating with other support professionals in their lives.

Within the VLS, the terms special needs and disability are often used interchangeably. It is important to note that while the two terms have similar meanings, the word disability is generally used to refer to a long-term condition or impairment that impacts the way a child or youth learns, participates, or interacts with the world around them. The term special needs often refers to additional supports or assistance a child or youth may need within an educational, developmental, behavioral, or health context. Language is a powerful tool that can create a sense of identity, purpose, and pride and is particularly important to consider when working with children and families. One critical way to empower families of children with special needs is to have a dialogue with them around their preferred language when referring to their individual child’s unique needs and abilities.

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, therapies and appointments to help their child 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 and available. Positive interactions with families and other professionals can decrease families’ stress and improve their well-being, as well as improve their confidence in you as their child’s care and learning program.

Families with school-age children with disabilities 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). The Center for Parent Information & Resources provides more information about IEPs and special education services. 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, goals and expectations.

The first step in establishing strong relationships with families of children with disabilities is to spend time discussing and learning their wishes and concerns for their children and to learn about the meaningful activities and routines 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 seek assistance from 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, it is important to acknowledge and respect their strengths and unique background, while realizing their ability to make the decisions that are right for them (Hanson & Lynch, 2004). This means that when a family’s wishes and decisions are different from what you would recommend, you respond to the family’s decisions with respect. Ultimately, meaningful communication and relationship-building will enrich the process for both yourself and the families you serve.

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 often change
• 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

Do

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

• Acknowledge that families know their child best and ask them questions about services, resources, or typical routines 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, events, or daily challenges 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.
• Modify daily activities so that all children can participate in their own way.
• 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 of 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.