In this episode, we discuss raising a child with special needs children into adulthood, and grief over the “loss of a shattered dream.” Harriet’s daughter, Nava, was born with agenesis of the corpus callosum. When her daughter was diagnosed, Harriet became very upset. She heard a lecture from a doctor who discussed parents going through the grief process when their child is diagnosed with a different need. She found psychotherapy and group therapy very helpful to help her through her grief. When you are pregnant, you expect a “normal and healthy” baby and when that doesn’t happen, your dream may feel shattered. She found it helpful to “rebuild her new reality” and to set new dreams and goals within that new reality.
Her daughter is now an adult. However, Harriet had to figure out how to facilitate the transition to adulthood. She first decided to think about what she was parenting toward, meaning what are your ultimate goals for the child and how can you assist the child to be as independent as they can be. To prepare her daughter for the transition, she made sure not to pity or enable her daughter, tolerate it when her daughter struggled, and to assist her daughter with being as independent as she could be.
Assisting the child in gaining a sense of self-pride and self-esteem was very important. She highly recommends getting on a wait-list for independent living a few years prior to when you expect your child to be ready to move into independent living. It was also helpful for her to find and work with a special needs attorney or elder lawyer, in order to gain assistance and education regarding supplemental needs trusts and guardianship.
Regarding work, she also recommends that the child obtain assistance and services through vocational rehabilitation. It is helpful to think about what your child likes and what his/her strengths are to help him/her find a job that is a good fit. She also found it helpful to have a Medicaid service coordinator that oversees things. If you have other children, it is really important to make sure you have one on one time with those other children as well.
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple