Healthy World, Healthy Nation, Healthy You

Tales from the Hearth: Nurse…Family… Mom~ Who’s on First? The Dilemma of Achieving and Maintaining Life and Role Balance in Caring for a Child with Autism Spectrum Disorder (ASD).

Kathleen Freeman PhD, RNC, NIC
Faculty, College of New Jersey, School of Nursing

Background:

Kathleen-FreemanDr. Kathleen Freeman is on faculty at the College of New Jersey, School of Nursing.  She has been in nursing education for over 20 years and has taught at the University of Pennsylvania, Rutgers University, and the College of New Jersey.  Within undergraduate, graduate, and RN-BSN education curriculums, she has taught human development, maternal-child health, community health, nursing foundations and theories, and autism. Certified in Neonatal Intensive Care Nursing and holding a Certificate in Applied Behavior Analysis from Rowan University, Dr. Freeman has a clinical background in the developmentally vulnerable and has expanded this expertise to include Autism Spectrum Disorders (ASD) as a parent of an adult child with ASD.   Contributing one of the first articles published on compliance with health procedures for the child with ASD in Pediatric Nursing, Dr. Freeman’s passion for maternal-child health and improving the lives of those affected by ASD leads her to research and projects that include enhancing nursing ASD education, perinatal risks for ASD, developmental issues for the family with a child with a disability, family advocacy for services (IDEAA, ADA), and behavioral pediatrics. She received her BSN from the University of Pennsylvania, MS in maternal-child health nursing from the University of Delaware, and a PhD from the University of Maryland.

Overview:

Nurse Kathleen Freeman, with a nursing degree and specialization in maternal/child care, gives a firsthand account of having a second child, pursuing her education and profession, and enjoying her marriage when her young  son was diagnosed with autism in  large part due to her pursuit in getting answers to her questions as to why he did not seem to be progressing like other children.  She discusses how being a nurse certainly helped her in dealing with this life challenge but that even with her knowledge and background, it was still very hard to grasp what was happening to her, her son and her family. Her lessons learned will help anyone dealing with similar issues and will give others a window inside how people deal with care giving challenges and still maintain the critical balance between providing care and having a life beyond the primary care giving role at home.

3 Key Points:

  1. Trust your gut – you are the mom. If something does not seem right–keep asking questions until you get answers.
  2. There is lots of work to be done, but do not make this child the only focus of your life. You will lose the other members of the family.
  3. Don’t forget you need care, support and love to do the job well. Mobilize the resources. — Do not create a job no one else can fill.

As stephan turnipseed, president emeritus of lego education, told me at iste, many try this portal are using 3d printers to print embellishments for their legos, and they do a great job of teaching kids how things fit together

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