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Stress levels are off the charts for parents of children with special needs

stressed out mom.jpg

 

All parents feel stress when they see their children face daunting problems.  But the stress endured by parents of children with special needs is sky high.  


For more than 20 years, I have heard from my clients that they are overwhelmed with anxiety when they see that their child’s educational program is not meeting the child’s needs.  They fear that the window of opportunity to remediate their child’s deficits is closing or narrowing.  They see that their pleas for better services often fall on deaf ears.  The journey to obtain an appropriate educational program is encumbered by barriers and frustration.  The focus of my legal work has always been to make that journey much more direct and successful.


So the toll on parents is enormous, especially before they understand how to be effective and persuasive in order to improve their child’s educational program.  The burdens of disability-related behavior and emotional problems at home, together with the lack of real educational progress, can erode parents’ resilience and energy.  Many parents describe their efforts to help their child as a second full-time job, which unfortunately can lead to reducing work hours or even leaving their jobs.


My anecdotal experience is supported by academic studies as well as other first person narratives.  Here is a sampling:


In the study “Maternal Cortisol Levels and Behavior Problems in Adolescents and Adults with ASD”, the authors examine the physiological effects of stress by measuring cortisone levels in mothers of adolescents and adults with autism.  The chronic stress levels are similar to those of “parents of children with cancer, combat soldiers, Holocaust survivors, and individuals with PTSD.”  While prior studies of mothers of individuals with ASD have found high levels of psychological stress, this study expands the prior findings by showing that the mothers exhibit physiological effects of chronic stress.


A companion study, “Daily Experiences Among Mothers of Adolescents and Adults with Autism Spectrum Disorder” examined the cumulative effect of daily stressful events on the same group of mothers compared to mothers of adolescents and adults without disabilities.  The researchers found significant differences in psychological well-being between the two groups.   The daily stressors resulted in twice as much fatigue for the first group of mothers, and almost 3 times the number of work intrusions for mothers of adolescents and adults with ASD.


The researchers conclude that parents need better programs to address their children’s disability-related behavior problems, and more support from their employers.


Parents of children with different disabilities are also subject to high levels of stress.  A recent PBS NewsHour broadcast featured an interview with Navy Captain Cassidy Norman, the father of Marisa, his 14-year-old daughter.  She has multiple disabilities including cerebral palsy, severe anxiety, and poor hearing and eyesight.  Marisa has normal intelligence and she can learn as long as she receives appropriate services and one-to-one assistance.


After multiple military moves, Captain Norman was posted to Virginia Beach.  However, the Normans soon found that Marisa was not making progress and even regressing, and her new school was not providing the educational program Marisa needed.  While Captain Norman was away on assignment to the Middle East, the entire burden fell on Marisa’s mom, Michelle.  She became depressed and despondent when she saw how the lack of an appropriate educational program was affecting Marisa.  


Captain Norman did his best to call into meetings with the school.  He described the level of stress he experienced:  


“I was responsible for the health and welfare for 3,000 sailors, plus 2,000 additional deployers on our ship. And even though that was stressful, it was more stressful for me to think about my daughter, who wasn't being taken care of by the public school here.”  

Captain Norman’s experience sums up the level of stress and anxiety caused by the school district’s failure to provide Marisa with an appropriate educational program.   The stress enveloped the family and intruded into his work.  

It is vital for communities and employers to grasp the difficulties faced by parents of children with special needs and to provide empathy and support.


Endnotes

1.   “Maternal Cortisol Levels and Behavior Problems in Adolescents and Adults with ASD” by Marsha Mailick Seltzer, Jan S. Greenberg, Jinkuk Hong, Leann E. Smith, David M. Almeida, Christopher Coe, and Robert Stawski (2010), published in J. Autism Dev Disord, 2010 April

2.  “Daily Experiences Among Mothers of Adolescents and Adults With Autism Spectrum Disorder” by Leann E. Smith, Jinkuk Hong, Marsha Mailick Seltzer, Jan S. Greenberg, David M. Almeida, and Somer L. Bishop (2010), published in J. Autism Dev Disord, 2010 February

3.  January 29, 2019 PBS NewsHour Interview with Cassidy Norman by Kavitha Cardoza

Susan Bardet