Know

Families of Young Children with Special Needs

Infants and toddlers with special needs are members of our communities, programs, and families, and it is our responsibility to provide high-quality, inclusive support and care for these children and their families. While these families often experience additional challenging situations and stressors, they have hopes, dreams, and goals for their children just like other families. You can positively impact families with an infant or toddler 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 infants and toddlers with special needs. Some infants and toddlers will enter your program with known disability, and other families will learn that their child has a disability or delay while enrolled in your program. You may even be one of the professionals that assists in identifying an area of concern or delay. Families with eligible children ages birth to three may receive early intervention services and have an Individualized Family Service Plan (IFSP). An IFSP is a written legal document that lays out the supports and services children with developmental delays would benefit from in order to make progress in the areas of need or concern. Others may only receive support from a medical center, and some families will be involved with multiple systems of support. Regardless, families can be overwhelmed by what feels like a constant flow of suggestions, therapies, and appointments to help their child learn and develop. These families often need more help supporting their children’s development and may turn to you, or others in your program, for assistance with connecting to services or agencies outside your program. It may be helpful to form relationships with community 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 early care and learning program.

Families with infants and toddlers with special needs may go through various evaluation processes and may ask you to complete questionnaires or provide input at the request of a doctor, specialist, or teacher. Other professionals rely on this input, especially when they have limited amounts of time with children compared to program staff who often spend many hours each week caring for, educating, and observing children in their daily routines. This information can be used to determine if a child has a specific area of need, support the child outcome summary (COS) process, determine eligibility for specific services, and develop goals for an IFSP or Individualized Education Plan (IEP). An IFSP is a written document that states families’ desired outcomes, the steps needed to achieve those outcomes, and recommended services. You, or a trainer or administrator from your program, may be asked to officially participate in a families’ IFSP review, a time when the team of professionals and the family come together to assess progress, create new outcomes, and determine needed services. Working with professionals from outside agencies helps things run smoothly for families and ensures that all of 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.

Effective Practices

The first step in establishing strong relationships with families of infants and toddlers with special needs 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. Maintaining this communication throughout a child’s time in your program is essential. Ask questions to learn about strategies that work at home and consider using them when providing care. Through your interactions you can build trust so both you and families feel comfortable sharing children’s strengths and if there are concerns (Sandall, Hemmeter, Smith, & McLean, 2005). 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 react in a variety of ways and know how you can offer support if they seek assistance from other agencies and resources. For families already receiving support from other professionals, ongoing communication with both families and professionals is critical to maintain consistency between program and home environments. When all the caregivers in a child’s life are consistently using the same, effective strategies to promote development and outcomes, children are more likely to benefit and learn new skills.

In your collaboration with families, it is important to acknowledge and respect their strengths and unique background, while realizing their ability to make decisions that are right for them (Hanson & Lynch, 2004). This means that when 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 (Turnbull, Turbiville, & Turnbull, 2000):

• Recognizing the family as a constant in the child’s life; caregivers and service systems 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

Watch the video below to learn about having difficult conversations with families. Refer to the content two sections above for more ideas on how to communicate about difficult situations.