The Impact Of Disability On The Family Life Cycle

January 9, 2013

Resources

In Pastor Lon Solomon’s book, Brokenness, he describes how his daughter’s disability changed hi s family’s life.  Jill’s seizures began in infancy, and after surviving more than 6,000 seizures, she is severely mentally and physically impaired.

“The impact of Jill’s sickness has been devastating for us,” says Solomon.  “There was physical and mental exhaustion…then there was the grief—the grief of watching our dreams and plans for our little girl vanish…All of our dreams for our own life would never be fulfilled either.  Brenda and I will be serving Jill for the rest of our lives.  But instead of considering it a burden, we consider it a privilege.”

The Solomon’s are an example of a family who has found God’s grace along the road of brokenness.

Having a child with special needs impacts a family not just at one stage of family life, but all stages.  The following is a brief example of how disability can impact the 5 stages of the Family Life Cycle:

Initial Diagnosis.  Families are entering a new world, coping with grief stages, informing family and friends, seeking state and county services, and making ongoing medical decisions.

Childhood and Siblings.  Families are adjusting expectations, helping siblings deal with stress, stretching their budgets, managing special education and various therapies.  As the child with special needs grows into childhood and enters elementary school, family members share a greater wealth of experiences. It is during these years that parents, and to a lesser extent, other family members, develop a vision for the child’s future. The intellectual and emotional energy required to form this vision can be quite draining to the family.

Transition To Adulthood.  Families are assessing levels of independence, seeking vocational and/or residential options and planning transitions.  The teen years are difficult enough for families of typically developing adolescents. When the teen has a disability, the normal process of establishing an identity and separating from parents can be even more complex. The teen years are generally a time to expand self-determination skills, which include the motivation, knowledge, skills, and responsive content to live life according to the individual’s values, preferences, strengths, and needs.

Adulthood.  Families are managing benefits, changing roles after the loss of parents, re-evaluating required services and facing additional diagnoses with age.  Since individuals receiving special education services can stay in the school system until age 22, many families identify that milestone as the time for transition into adulthood. Under IDEA, planning for the transition at age 22 should begin at 14. While most families do begin the process at that time, the full reality of the situation may not hit home until the individual with disabilities nears the magic age of 22 years. At that time, the family faces a significant number of issues that require complex planning and implementation.

End-Of-Life.  Families are seeking moral and ethical guidance for end-of-life decisions, grieving the potentially long “goodbye” and considering life without their loved ones.

Here’s a great resource for those of you who would like more information on this topic:

Disability And The Family Life Cycle.

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Michael Woods

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About Michael Woods

Christ-follower, husband, chocoholic, and peanut-butter lover! I'm a father to triplet boys...each on the autism spectrum.

View all posts by Michael Woods

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