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16 Young Children • September 2009

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FAMILIES MAY LEARN THEIR CHILD HAS A DISABILITY during pregnancy, at birth (as baby Ella’s parents did), or even later, when their child enters a child care program in a home or classroom setting. Although a family’s reac- tion to the news that their child has a special need may depend upon the child’s age, the severity of the disability, and the family’s cultural view of disabilities (Muscott 2002), researchers liken the experience to the grieving process that Kubler-Ross (1969) describes in her classic book, On Death and Dying. Reactions move from denial of the disabil- ity to anger at the diagnosis, to bargaining with the experts

involved in the diagnosis, depression, and to acceptance of the disability. Acceptance of the diagnosis can take years, as frequent reminders of the disability cause families to reexperience the grief. For example, one parent said, “Grief may hit you when you least expect it—during a Christmas shopping trip . . . when you buy baby toys for a 9-year-old” (Naseef 2001, 207).

Stages of adjustment

Some parents criticize this “grief” view of adjustment to a disability as being patronizing and not fi tting their experiences. Ulrich and Bauer (2003) propose instead that the adjustment experience occurs in four levels as parents gradually become aware of the impact of their child’s dis- ability. These levels include the following:

Julie A. Ray, Julia Pewitt-Kinder, and Suzanne George

Julie A. Ray, PhD, is an associate professor of education at Southeast Missouri State University in Cape Girardeau. Julie has taught courses in family involvement for more than 13 years and is the coauthor of the textbook Home, School, and Community Collaboration: Culturally Responsive Family Involvement. jaray@semo.edu Julia Pewitt-Kinder, DO, is a board-certifi ed family practice phy- sician and writer in Cape Girardeau, Missouri. Dr. Pewitt-Kinder speaks about Down syndrome to children in elementary schools and to students and professionals at colleges, hospitals, and conferences nationwide. As a volunteer for the Down Syndrome Association of St. Louis, she offers family support. drjuliado@yahoo.com Suzanne George, PhD, is a professor of early childhood at Missouri State University in Springfi eld. She has been a special educator and teacher educator in early childhood and special education. SueGeorge@missouristate.edu This article is available online at www.naeyc.org/yc.

Partnering with Families of Children

“There’s no good way to tell you. Your baby has Down syndrome,” said the pediatrician. My world instantly stopped, and I felt a black fog closing in. I couldn’t move or breathe or speak. The only sound I heard was my husband sobbing. My first thoughts were “No, I can’t do this. How do we go from expecting a perfectly healthy baby to receiv- ing a stranger?” Finding out that our daughter Ella had Down syndrome was like being told that the baby we dreamed of had died and now we had a child we knew absolutely nothing about.

—Baby Ella’s Mother (One of the Authors)

 

 

Young Children • September 2009 17

1. The ostrich phase. Parents do not deny a disability but do not fully realize its impact. For example, a parent may say, “He’s all boy. He just doesn’t like to sit still and read a book.”

2. Special designation. Parents begin to realize that their child has a special need and seek help or ask for special services.

3. Normalization. Parents try to make the differences between their child and children without disabilities less apparent and may actually request a decrease in services and more regular classroom time.

4. Self-actualization. Parents do not view being different as better or worse, just different. They support their child in learning about his or her disability, including how to be a self-advocate.

As an educator, you may fi nd that it is not as important to classify families by stages of adjustment to the child’s disability as it is to understand that families have varied reactions and may work through their feelings in a different way and pace. It is helpful to realize that you and the family may not be operating at the same level or stage of under- standing about the child rather than to make comments like “That family is so demanding” or “If the dad would get over his anger, we would be able to work together better” (Ulrich & Bauer 2003, 20). Listening to families is key in working with them as partners in supporting the learning and development of their child with special needs. Unless you have a child with a disability, you cannot fully under- stand the experience. As you get to know the child and family, it is also impor- tant to learn about and participate in the development of the child’s Individualized Family Service Plan (IFSP) or Individualized Education Program (IEP).

IFSP and IEP services

Some early childhood teachers may feel overwhelmed and unprepared to have a child with special needs in their care. However, it is imperative that they learn about the spe- cial education process so they can support families in the myriad decisions they will face about their child’s educa- tion. The Individuals with Disabilities Education Act (IDEA) of 2004 ensures early intervention, special education, and related services for more than 6.5 million infants, toddlers, children, and youths with special needs (U.S. Department of Education 2009). A child younger than age 3 can receive early intervention services in the home or child care setting through an Individualized Family Service Plan devel- oped specifi cally for the child by a team that may include therapists, early intervention specialists, teachers, caregivers, and parents. For children with special needs age 3 or older, the local school sys- tem develops and admin- isters an Individualized Education Program. Both the IFSP and the IEP state the goals and objectives for the child’s

with Special Needs

Listening to families is key in working with them as partners in supporting the learning and development of their child with special needs.

 

 

18 Young Children • September 2009

developmental and educational progress. This plan or program also specifi es who delivers the services, such as speech or occupational therapists, how the child’s progress is assessed, and if any special classroom placements are needed. The parents’ agreement with all the plans in an IFSP or IEP is required. Educators and families both benefi t in understanding the key differences between an IFSP and an IEP (see “ISFP and IEP Key Differences”). Although there are some common themes between the IFSP and the IEP, the dif- ferences focus on two main areas. In an IFSP, the concept of providing services in natural environments, such as the home or child care setting, is an important component. In an IEP, the school setting is typically where services are provided. Another major difference is the focus in an IFSP on the needs of not only the child, but also the family. IDEA legislation requires the coordina- tion of services from various agencies to avoid fragmented delivery of these services. In the child’s fi rst three years, a service coordinator assumes this responsibility, which may include any help needed for the family to function more effectively, such as food, shelter, health care, and educa- tion. When the child turns 3 and leaves the early interven- tion program, the service coordinator’s role concludes.

From age 3 through age 21, the local school district acts as coordinator. Teachers and caregivers are important partners with families in the implementation of an IFSP or IEP. Families should be a part of the IFSP and IEP planning processes; educators can make sure this happens. For example, Ella’s parents and all of Ella’s caregivers and specialists attended

and shared information during IFSP and IEP meetings, which gave a view of her development from several different per- spectives. Educators facilitate the day–to- day environment in which the child par- ticipates, so it is essential to communicate with the family and other service provid- ers, such as physical or developmental therapists, to know about and understand their recommendations for appropriate activities and materials to use with the child. For example, Ella’s occupational therapist showed her preschool teacher how to help Ella hold pouring utensils so

she didn’t soak herself at the classroom water table. As an educator, helping to implement objectives and obtain outcomes for the child with special needs is a major role for you, as well as reporting child outcomes to the IFSP and IEP teams. Also, asking family members questions to learn what you can about their child’s specifi c abilities and needs is appropriate and helpful throughout the process.

IFSP and IEP Key Differences

Sources: Bruder 2000; PACER Center 2000; Concord Special Education Parent Advisory Committee 2001; United Cerebral Palsy 2009.

Individualized Family Service Plan (IFSP) Birth through age 2

Focuses on the family and parents’ role in supporting the child’s learning and development

Outcomes focus not only on the child, but on the family

Includes the concept of natural environments as places where learning occurs, such as at home, in child care, outdoors in parks, and so on (services may be provided in the home)

Involves many agencies in providing services because of the child’s age; the IFSP integrates the services

Names a service coordinator, who assists the family in car- rying out the plan

Involves an initial meeting with the family to offer information and resources and to defi ne the various agencies’ roles and fi nancial responsibility

Typically includes a meeting with the family every six months

Individualized Education Program (IEP) Ages 3 through 21 years

Focuses on the child

Outcomes focus on the child

Focuses on school and classroom environments, with ser- vices provided in the school setting

Assigns the local school district to manage the child’s services

Authorizes the local school district to coordinate the program

Involves a meeting with the family to develop long-term and short-term goals for the child, accommodations and modi- fi cations, services, and child placement

Typically includes a meeting once a year

Families should be a part of the IFSP and IEP planning processes; edu- cators can make sure this happens.

 

 

Young Children • September 2009 19

Transition from the IFSP to the IEP

At age 3, children leave their state’s early intervention program and move into the public school system’s early childhood special education program. This transition from the natural home or infant/toddler child care setting to the typically more institutional classroom environment can be diffi cult and overwhelming for families, who must now learn about the IEP process and education laws, attend lengthy meetings, get acquainted with new therapists and school staff, and subject their child to new testing and evaluations.

As Ella’s parents, we experienced a range of new emotions in this transition from the IFSP to the IEP. We felt sad, tired, concerned, angry, and surprised—

“Overnight, our child went from a baby to a school girl!”

“The complexity of our schedule increased with meetings, paperwork, and travel to numerous therapy locations.”

“Our daughter would be exposed to illnesses in the class- room setting that she was protected from when receiv- ing services at home.”

“Strangers were telling us what they thought was best for our daughter based on a test score and a single meeting.”

“We did not know we would have to fight for our daugh- ter’s rights.”

Supportive caregivers and teachers can ease the stress of the transition from an IFSP to an IEP. Explaining families’ rights and the procedures in the special education process and encouraging families to learn about the process is one way to provide support. Preparing families for an IEP meet-

ing, typically once a year, by informing them of who will be there, what each person’s role is, and what will happen in the meeting is also helpful. Let families know that they can bring advocates with them to this meeting. Emphasize beforehand to the families their importance in the IEP meeting, and suggest they prepare and bring a list of their goals for their child. If needed, help them identify their concerns, family strengths, and priorities for their child. Encourage families to raise questions at the meeting about things they don’t understand to make sure they agree with the IEP before they sign it (North Bay Regional Center 2008; PACER Center n.d.).

Strategies for working with families of children with disabilities

Families of children with special needs often have ideas from their perspective as parents about other ways educators can show support. Some collected suggestions focus on under- standing family life, learning about disabilities, communicat- ing frequently, and working through challenges with families.

Understand family life

Appreciating and respecting the extra work it takes for families to care for and educate children with special needs is important. At the age of 3 months, Ella began a weekly schedule of six hours of physical, speech, developmental, music, and occupational therapies. She engaged in oral- motor exercises three times daily.

We taught all of Ella’s caregivers how to feed, carry, and play with her. To accomplish the innu- merable daily therapy goals, we kept lengthy, detailed checklists for separate caregivers. We asked caregivers to work on occupational ther- apy tasks such as having Ella pick up objects with clothespins and tongs or blow bubbles or suck drinks through thin straws to work on oral- motor (speech) therapy. All play activities were tailored to meet therapy objectives, as were the toys and books we purchased. Ella is now 5 years old, and our lives revolve around her therapies. Our family’s life is not unique in the strain that a child with special needs can place upon family time. Whether it is a therapy session, exercises, medical treatment done at home, or an unex- pected hospital stay, there are extra demands for families of children with special needs. For working parents who cannot rearrange their daily schedule to fit therapies or doctors’ appointments, difficult choices between their child’s care and workplace requirements cause additional stress.Co

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20 Young Children • September 2009

Supportive teach- ers and caregivers help ease parents’ stress, whether it is implementing daily therapies or offer- ing a sympathetic listener’s ear. Some parents may not be aware of all the ser- vices needed to meet their child’s needs or be able to afford them. Thus, inform- ing families about resources in the community and how to access them is an important teacher contribution. For example, because of a mother’s limited literacy abilities, one early childhood teacher helped her fi ll out the paper- work necessary to get home medical equipment for her preschool child with severe disabilities.

Learn about the disability