Mar 26, 2020
Episode 28: Raising a Special Needs Child Into Adulthood With Guest Harriet Cabelly
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.
Links:
Harriet Cabelly
Email
Facebook
Twitter
LinkedIn
Living Well Despite Adversity
Special Needs Trust
Vocational
Rehabilitation
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Show Music:
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