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Caring for children with disabilities in your programs creates a welcoming and inclusive community. Learning how to talk about disability is an important part of community-building. You may hear different language or terms from families when they describe their child’s diagnosis or abilities. Some families will use “special needs” or “disability.” Others will use specific terms such as, “He has Down syndrome”, “My child is autistic”, or “our Deaf family.” Depending on a host of individual family factors, some families may avoid speaking about disability at all even if they previously shared information with you. It’s important for caregivers and teachers to take their cues from each individual family. It’s also important to talk openly and honestly about disability, and to acknowledge the range of discrimination and pride that families may experience. Some families and professionals will prefer person-first language (child with autism) and others will prefer identity-first language (autistic child). Teach staff to listen to families’ preferences and to stay current on how terms are evolving. Teach staff that some dated terms are never OK and are offensive (e.g., retarded) There may be times when you, caregivers, and teachers need to ask families questions about caring for their child. It can be difficult to avoid using medical terms and jargon during these conversations. If you are unsure of what to say, ask the family how they prefer you speak about their child’s needs or condition. This shows the family that their input is valued, and it builds trust in your partnership with them.

Read the following three scenarios and think about how you would support staff in partnering with families to meet their child’s needs.

1. Infant Scenario:

Mason is a four-month-old infant born with a cleft lip, a condition where the skin that forms a baby’s upper lip does not completely join and leaves a slit in the skin. Mason stayed in the neonatal intensive care unit (NICU) and needed a feeding tube to eat the first few weeks of life. The family shared with Jorge, Mason’s caregiver, that their time in the hospital was an extremely stressful experience. Mason is now doing great and only needs the help of a specialized bottle nipple for eating. Mason’s mother and father are thrilled to have Mason in your program, and Mason’s mother is excited to return to work. They’ve said they are looking forward to, “enjoying our baby and returning to a normal life.”

Mason’s cleft lip is noticeable, and other staff and parents of other infants in Jorge’s room have asked Jorge questions such as, “What happened to that little baby” or “What kind of bottle is that?” Jorge is not sure how to respond or what Mason’s family feels comfortable sharing. Jorge feels he should communicate with Mason’s parents that others have asked questions about their child.

2. Preschool Scenario:

Mia is a child in LaNesha’s preschool classroom. LaNesha has made many attempts to share about Mia’s learning, but Mia’s family members rarely ask questions or talk about their lives. Although Mia’s parents have never directly spoken to any program staff about it, you know from the enrollment paperwork the family completed that Mia has a diagnosis of cerebral palsy. Since enrolling in the program two months ago, LaNesha, has observed Mia to be a happy child who can do everything peers can do, but is a bit slower than most children in class. LaNesha and her co-teacher, Tammy, have recently noticed that it is becoming increasingly difficult to help Mia put shoes on, and Mia has begun to trip and fall more frequently. LaNesha and Tammy are not sure if this is “normal” or to be expected for a child with cerebral palsy. They are concerned for Mia’s safety and feel it is necessary to talk with the family.

3. School-Age Scenario:

Liam is an eight-year-old in Poppy’s school-age program born with moderate hearing loss in both ears. Liam has a set of hearing aids but does not consistently wear them. On days when Poppy notices that Liam is not wearing hearing aids, Liam often says, “forgot them at home” or “couldn’t find them this morning.” Other times, Liam has the hearing aids, but they need new batteries and don’t work. Liam’s ability to follow directions and interact with peers is significantly better when wearing working hearing aids. Liam already needs support with peer interactions, and challenges in this area are worsened when hearing is impacted. Although bullying is not an issue in the school-age program, Liam’s parents have told Poppy that bullying has been a problem at Liam’s school. They feel that Liam’s time in the school-age program has positively impacted Liam’s ability to make friends. Poppy feels the need to discuss Liam’s inconsistent use of hearing aids with Liam’s parents to best support their child’s learning and friendships.