It is important to remember that family experiences throughout a child's infancy and childhood has a major impact on all involved and sets the tone for the future decisions and actions during one's lifetime. Overall, the way in which individuals and families respond to a Down syndrome diagnosis has a major impact on the entire family.
Every family that copes, adjusts, and adapts to a Down syndrome diagnosis differently and this diagnosis may impact a family either positively or negatively (highly individualized). Some families may adapt quickly while others have difficulty accepting and sharing the child's diagnosis. However, there are many factors that can help to determine family outcomes and functioning for families that have a child with Down syndrome.
Family Adjustment & Adaptation
Every family that copes, adjusts, and adapts to a Down syndrome diagnosis differently and this diagnosis may impact a family either positively or negatively (highly individualized). Some families may adapt quickly while others have difficulty accepting and sharing the child's diagnosis. However, there are many factors that can help to determine family outcomes and functioning for families that have a child with Down syndrome.
Family Adjustment & Adaptation
- It is important to take the addition of a Down syndrome child in stride. Adjust over time, adapt to increasing and new demands, and try to grow along the way.
- Once a child is diagnosed with Down syndrome, the family needs to make immediate/short term changed to adjust and allow for coping with new demands, as well as ling term changes to adapt to the situation.
- Three factors are associated with successful family adaptation
- Family Meaning
- The way you think about what is happening in your family and view the demands presented, as well as your ability to fulfill those demands is important.
- The more positive and adaptive you are about these things can help you to be more proactive.
- The meaning a family associates with having a child with Down syndrome can change over time.
- Some families start out with a negative meaning that slowly becomes more positive. (adjustment and adaptation).
- Some families start out with a positive meaning that slowly becomes more negative (build up of demands and lack of resources).
- The meaning you form about your child's diagnosis also impacts the meaning that they associate with their own disability.
- Family Resources
- Social, psychological, interpersonal, and material characteristics that the individuals, family, or community has to offer.
- At the time of diagnosis, a family has existing resources (marital relationship, financial stability, health of other family members, etc.). However, following the initial diagnosis, families need to continually develop new resources (creating friendships with other parents who have children with intellectual disabilities, attending support groups, finding qualified childcare providers, etc.).
- Physical and psychological health are the most important individual resources!
- Higher level of education, strong spiritual/religious beliefs, high problem solving skills, and high self-esteem and self confidence are also important resources.
- Coping Behaviors
- It is important to do what you can to:
- Reduce demands
- Increase resources
- Maintain & allocate those resources
- Manage unresolved tensions
- Alter meanings as necessary
- Accepting and meeting the child's needs, just like they are the needs of a typically developing child can help coping.
- Every child has specific needs and unique personalities that parents must adjust and adapt to.
- Do what you can to adapt family activities to the child's developmental and ability level.
- Keep the child's needs and safety in mind when traveling, going to family gatherings, or celebrating holidays/special occasions
- Use friends and family as support for your family.
- Also, as the child gets older, families benefitted from the Down syndrome individual being involved in open employment (work in a mainstream setting with support) and also benefitted as the child was more able to function with activities of daily living.
- It is important to do what you can to:
- Family Meaning
Positive Impact
Many report that having a child with down syndrome has positively impacted their family.
- Has enriched the entire family and has been a great addition
- Helped shape life philosophy
- Taught family members valuable life lessons:
- New appreciation for life
- Re-evaluation of what is important/prioritization
- Learn how to tolerate and accept the differences of others
- Learn to value patience
- Learned the value of selflessness
- Helped to bring the family closer together
- Helped to form new friendships/foster new relationships
- Overall make family members better people through increased caring, empathy, and compassion.
Negative Impact
There are also a variety of negative impacts families have reported from having a child with Down syndrome in their family.
- Impact on siblings
- Parents recognize that siblings had less attention, restricted social lives, and sometimes took the caretaker role for their Down syndrome sibling.
- Feeling that the family is "trapped"
- Caring for the Down syndrome individual caused the family to lack spontaneity and freedom
- Difficult to find appropriate childcare
- Feelings of social isolation
- Marriage breakdown due to lack of alone time, financial strain, and differing parenting styles.
- Cost of childcare, education and entertainment
- Difficulty going to different places/need to restrict activities
- Behavior issues (stubbornness, tantrums, aggression, social behaviors, etc.)
- Routine, ritualistic, compulsive behaviors
- Attention span & anxiety about new/unfamiliar environments
References:
Abery, B. H. (2006). Family Adjustment and Adaptation with Children with Down Syndrome. Focus On Exceptional Children,
38(6), 1-18.
Foley, K., Girdler, S., Downs, J., Jacoby, P., Bourke, J., Lennox, N., & ... Leonard, H. (n.d). Relationship between family quality
of life and day occupations of young people with Down syndrome. Social Psychiatry And Psychiatric Epidemiology, 49(9), 1455-1465.
Marshall, J., Tanner, J. P., Kozyr, Y. A., & Kirby, R. S. (2015). Services and supports for young children with Down syndrome: parent and provider perspectives. Child: Care, Health & Development, 41(3), 365-373.
Povee, K., Roberts, L., Bourke, J., & Leonard, H. (2012). Family Functioning in Families with a Child with Down Syndrome:
A Mixed Methods Approach. Journal Of Intellectual Disability Research, 56(10), 961-973.
Photos were purchased/dowloaded from www.dreamstime.com and are royalty free:
Abery, B. H. (2006). Family Adjustment and Adaptation with Children with Down Syndrome. Focus On Exceptional Children,
38(6), 1-18.
Foley, K., Girdler, S., Downs, J., Jacoby, P., Bourke, J., Lennox, N., & ... Leonard, H. (n.d). Relationship between family quality
of life and day occupations of young people with Down syndrome. Social Psychiatry And Psychiatric Epidemiology, 49(9), 1455-1465.
Marshall, J., Tanner, J. P., Kozyr, Y. A., & Kirby, R. S. (2015). Services and supports for young children with Down syndrome: parent and provider perspectives. Child: Care, Health & Development, 41(3), 365-373.
Povee, K., Roberts, L., Bourke, J., & Leonard, H. (2012). Family Functioning in Families with a Child with Down Syndrome:
A Mixed Methods Approach. Journal Of Intellectual Disability Research, 56(10), 961-973.
Photos were purchased/dowloaded from www.dreamstime.com and are royalty free:
- https://www.dreamstime.com/stock-photo-happy-family-moments-park-image71525988#res17063987
- https://www.dreamstime.com/stock-photo-parents-children-reading-stories-together-family-sitting-couch-christmas-tree-image63825698#res17063987
- https://www.dreamstime.com/stock-photo-close-family-six-their-dog-talking-walk-image64299140#res17063987