The parents of a special needs child are often called away from work to attend to the needs of their child. There are bi-annual IEP meetings to attend, appointments for various therapies, such as speech, occupational, physical, and sensory integration; and behavioral issues to address at school.
Parents often decide that one parent will need to remain home full or part-time to care and advocate for their child. The family now has less income but higher medical expenses than the average family due to the costs of doctor and therapy appointments. According to K E Heck and D M Makuc, in their December 2000 article in Am J Public Health,
Lower full-time employment among parents of children with special needs contributes to the children’s being less likely to have employer-sponsored health insurance. Medicaid covers many children with special needs, but many others remain uninsured. [vii]
A study from the University of North Carolina at Chapel Hill shows,
families across all income levels who are raising disabled children are significantly more challenged by food, housing and health issues compared to families without disabled children. Many also struggled to pay their phone bills.
The study indicates that a significant portion of middle and higher income households are struggling, not just the poor. These households would not qualify for assistance, despite the higher costs of raising children with disabilities.[viii]
Coaching can support the parents in this issue by working through any underlying beliefs they have about income, and explore whether or not they want to seek a higher paying position and what that would look like. The coach will also explore with the parents whether or not one parent should stop working outside the home, and assist with any transition. They will hold them accountable for implementing and following a budget; and assist them with building a support network not only for emotional support but for the possible care of their child.
The additional responsibilities of caring for their special needs child can severely limit a parent’s personal time. The 2011 survey by In Sight Life Coaching addressing what parents and caregivers need to live a well-balanced life indicates that the majority of the participating parents seek stress reduction and additional support, especially someone they can trust to care for their child, so they may have much-needed time for themselves. When asked which area of their life was most affected by the stress of raising a special needs child, 51% answered Health/Fitness, 42.9% answered Romance/Love, and 28.6% answered Family and Fun/Recreation. See Appendix A.
Lack of time and space for rest and replenishment can make it difficult to shrug off the stereotypes and blame sometimes expressed by others. It is not uncommon for the parent to hear someone say when witnessing their child’s meltdown that if they were the parent, the child would respond differently, or that the meltdown would not be happening. People may place judgment on the parents for their child’s disability and think theparents must have done something terrible during pregnancy for the child to be disabled.
Coaching can support the parents by helping them see how important self-care is for their well-being, as well as the well-being of their child. A coach can help them create personal boundaries and goals, determine what is needed to achieve those goals, and hold them accountable for taking the steps to achieve them. A coach will also help them explore better time management. As indicated in the In Sight Life Coaching Survey, participants expressed a desire for additional support; 42.9% stated they did not currently have a support system in place, and 21.4% said they would like help in putting one together. See Appendix A.
When a disabled child becomes an adult, his or her parents no longer have legal right to make legal or financial decisions for them. If the disabled adult is not able to make these decisions him or herself, guardianship or conservatorship can be established to appoint these responsibilities to the parent or another trusted adult and protect the disabled adult.
Many disabled individuals qualify and receive public monetary benefits for their care. This money covers basic needs, such as food, clothing, and housing, but is not enough for the additional care and resources most parents would want for their loved ones once they are no longer able to care for and provide for them. Parents can plan their estate, obtain appropriate life insurance and create a special needs trust to insure the desired amount of funds are available for their child when that time comes.
Coaching can support the parents by with resources of professionals who specialize in estate planning and special needs trusts. Some parents will procrastinate and not address these issues until the last moment or even wait until it is too late. A coach can listen to the parents’ concerns, explore any fears they may have, provide encouragement, and help them stay accountable through the process of planning their estate and providing future care for their child.
Having a child with special needs sets into motion a number of stress conditions that detract from parent well‐being, the quality of family relationships, and parenting behavior. Disability education, the ability to utilize social support and cope with stress appear to be important in helping parents provide the types of parenting behaviors that will support healthy development in their children and promote a more well-balanced life for themselves.
Parenting a child with special needs requires confidence and the mastery of unique parenting and coping skills to best support the child and live a well-balanced life. An effective way to meet this challenge is to work with a special needs focused coach. Coaches provide resources, bolster parental confidence, help establish goals and act as an accountability partner, provide emotional support, and assist in developing self-care practices and coping skills to improve parental behavior and emotional well‐being.