For the most part, the public’s perception of child with special needs is lacking in not only respect but acceptance as well. For families that struggle daily to provide the care and compassion of their loved one, they must always work on skill building, daily living needs and environmental modifications.
As a coordinator for in-home services for developmentally disabled children, I had the privilege of interacting with children and realized the honor in knowing and understanding their daily struggles. In most cases, the families were well adapted to caring for their loved one but needed some insight as to services to improve the quality of life for their child. To be a part of these families showed me another side of children with down syndrome.
The families must be diligent in maintaining a normal environment for their child. It is important that these children are treated and accepted in the same manner as a “normal” child. This involves working on their daily living needs. These needs consist of getting ready each morning, brushing their teeth as well as having chores in the home. While these needs may require extensive guidance and assistance, it is important to integrate the child into a regular environment.
Parents and other family members offer assistance in money skills, shopping skills, and socialization within the community. These skill building exercises allow the child to improve not only their quality of life but also their acceptance in society. These tasks add some additional stress to complete but they become valuable resources for the child’s future. The families learn to cope with the additional time and guidance that their child needs. While most of these skills are directed to higher functioning children, families with lower functioning children often use this as a basis to bring happiness and love to their child. Families constantly face the tasks of reintegration and repetitive tasks to enforce an environment that functions to the fullest of their abilities.
I continually witnessed and aided families in modifying environments to meet the needs of children with down syndrome. These modifications involved small changes to the home; families needed time and patience to adapt to these changes. Some changes involved lower toilet seats, raised table chairs and bathing accessories.
Through working with the children and their families in developing care and service plans, I was able to experience one of the greatest rewards. I experienced the love, patience and acceptance that children with down syndrome offered. They were some of the best people I ever had the privilege of knowing and working with. These families stood tall and proud in loving their child without any restraints to the needs of a child with down syndrome. The promise of a better future is the driving force for these families.