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Children's Medical Services - Special services for children with special needs
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Infant Toddler Development Training
Module 1, Lesson 5

Effect of Developmental Disabilities and Disorders on the Family

This module has generally focused on the effect of developmental disabilities and disorders on child development. Equally important is the effect developmental disabilities and disorders have on the family structure. How the family copes with the daily stress and needs of its family members can influence the outcome of the child (Miller, 1994; Saddler, Hillman, & Benjamins, 1993; Snowdown, Cameron, & Dunham, 1994). Positive, negative, and neutral effects generally depend on the nature of the family. According to Turnbull and Turnbull (1997), successful families have a reasonable balance of affection, financial independence, care, recreation, and education and consistently show the value of caring, affection, and unconditional love while raising children. It is important for the Infant Toddler Developmental Specialist (ITDS) to recognize the family's strengths and empower the family to meet the needs of the child and family. Being respectful of cultural differences and religious beliefs is also equally important. One of the first situations that a family encounters is when the family first learns that their child has a developmental delay, disorder, or disability. Coping with this news introduces a whole new dimension to the family structure. Not only is the family faced with the situation of readjusting expectations, there are other factors now present: family members' and friends' needs and social isolation issues, time and physical demands, and financial, transportation, and medical issues.

Family issues

baby over dad's shoulderNeeds of family members often go unnoticed or unfulfilled due to the heavy demand of meeting basic needs of the child with the disability in the household. Providing quality time for all family members, even though important, is sometimes impossible. Family members may also experience bouts of depression. Families can be under tremendous stress as well as the physical strain they encounter in making appointments and providing quality child care. Depression can also be a result of strain between spouses over disagreements over child care or treatment options and/or the overall responsibility of caring for a child with special needs.

As the parents react and respond to the news their child has a developmental delay, disorder, or disability, extended family members and/or friends may be experiencing issues. Grandparents may not understand the "diagnosis" or may even place blame on one of the parents. Friends of the family may feel awkward or uncomfortable in the presence of the child or lack words for consolation and thereby stay away. Babysitters may also be hard to find possibly due to the need for a more skilled professional sitter. All of these situations can lead to isolation for the family. Even if family members want to maintain their social life, time and specialized needs of the child may prohibit that from happening.

It is quite understandable how the needs of siblings may become overlooked; especially at the onset of discovering a child has a special need. It is important to note that overall, children have mixed feelings about their siblings with disabilities (Knott, Lewis, & Williams, 1995). Some children may feel guilty that they are able-bodied and their sibling isn't, some may worry that they may contract the disability, and others may feel less loved or cared for due to the time and care required for the child with the disability. It is important that the parents understand the importance of balancing their efforts so as not to overlook the needs of the unaffected siblings. Many siblings experience positive rewards from living with a brother or sister with a disability and become more nurturing, understanding, and caring individuals.

Time/physical demands

The demands placed on a family of a child with special needs can be overwhelming. The physical demands as well as time demands placed on families can exhaust a family's well-being. Physical demands may entail lifting and positioning a child with motor deficits and/or providing daily living skills, just to name a few situations. The necessity of scheduling therapies, medical interventions and services can place time restraints on the family structure. The physical and time demands can interfere with parents' jobs which can lead to added stress on the family system. Finding appropriate and quality child care can also be taxing on the family and may result in one caregiver staying home to provide the necessary child care.

Financial issues

Financial issues can have a tremendous effect on families. Sometimes, just life-saving medical intervention can exhaust a family's finances. Medical services as well as transportation and home renovation needs may also have an effect on a family's financial resources not to mention the issues already addressed above. Much medical technology assistance can be very expensive, depending on the type of equipment needed and the severity of the disability. Therefore, financial issues need to be addressed. As an ITDS, you might be the resource person the family turns to for advice on financing and securing technological assistance. Resources for the family to assist in providing such technology may be crucial for the child's well-being and life.

Transportation is another concern for families of children with disabilities. Many times alternative or modified transportation is needed (i.e. wheelchair modified vans). As an ITDS, it is important to have knowledge about available resources for the parents/caregivers that may need information concerning public transportation alternatives and transportation modifications. Due to transportation concerns, it may also be necessary to adjust therapy schedules and medical services accordingly to accommodate the transportation needs of the family/caregiver.

Home renovation is a need for some families to accommodate wheelchairs, bathing/toileting needs, etc. Such renovations can be extremely expensive and may overwhelm families.

 

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