Stress, PTSD and Parents of Kids With Disabilities

As a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals they would like to work towards.

During that initial phone call, I’m often left thinking, “How are you, as the parent, doing?” Parents are often surprised when I ask that question during the intake. Several parents have responded with silence, a confused, “Fine,” or “No one has ever asked me how I’m doing.” As a parent of a child with disabilities, the process of gaining a diagnosis and then figuring out life and supports and medical conditions can be overwhelming and often traumatizing. In my experience, many parents of children with disabilities and other medical needs are experiencing symptoms of  post-traumatic stress disorder (PTSD).

How Does a Parent Develop PTSD?
For the parent, the initial trauma can come from realizing that “something isn’t right” with their child, researching, and ultimately gaining the diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the child they thought they would have. The next phase is accessing medical supports or services and not being entirely sure how it will work and what the outcome will be. Then, adolescence hits and some children with disabilities develop anxiety or depression.

For example, for some parents of children with autism spectrum disorder, their children may become aggressive. Some kids have been aggressive all along. As a result, parents are often concerned about safety, often hiding bruises or staying at home to protect their child so that others don’t witness the physical aggression. This becomes even more complicated when there are other children in the home and parents struggle to give them attention, nurturance and time, something they often can’t do successfully because taking care of their sibling can sometimes be a 24-hour, 7 days per week job.

Raising a child with disabilities can also take a toll on a marriage. Parents care for their kids leaving little time for themselves as a couple. Finding someone else to care for the child can be difficult. That caretaker or babysitter needs to be trained and OK with possible meltdowns, behaviors or medical needs. And the icing on the cake is that some families become one income households so that one parent can take care of the multiple needs and therapies for the child, meaning that money can be tight, which is another source of distress for parents. Sometimes the marriage doesn’t survive due to the stress and lack of supports.

Parents are also left anticipating what might trigger their child and are constantly accommodating and modifying the environment to help their child stay calm or regulated. For some children, as they become older and their needs become more complex, some parents have to make a tough decisions about whether or not to find a residential program. Throughout this process that takes place over years and years, parents can become burned out, distressed, anxious, depressed and sometimes even feel hopeless and helpless.

by Dr. Liz Matheis, Ph.D and The Mighty
"The various psycho-educational testing Dr. Liz conducted on our son gave us critical clues about where his learning strengths and weaknesses lie so that his needs could be better addressed at home and school. Moreover, because of their warm, kindhearted personalities, both Dr. Liz and her associate, Stephanie, formed an immediate bond with my son. He eagerly looks forward to his weekly therapy sessions. We are so lucky Dr. Liz came into our family's lives when she did! For stressed-out families trying to help their children as best they can, she is a calming voice of reason!"
- Julie C.
"Dr. Matheis has a remarkable ability to understand the unique needs of her patients and address them constructively. She builds strong, meaningful relationships with patients and their families, encouraging trust and collaboration. When working with my son who struggles with autism-related anxiety, she created an environment in which he was able to calm down and open up to her in ways I had not seen before. She was able to reach him and helped him work through his crisis/problem. Most importantly, she empowered him to move forward."
- N.L.
"Dr. Matheis is amazing. She has tremendous resources and loads of energy. She is not willing to accept anything less than the most effective results for her clients. She made me feel as if my son was her top priority throughout the entire process. I would, without reservation, give her my highest recommendations.  Thank you, Dr. Matheis!"
- Anonymous
"Dr. Matheis has an amazing ability to read kids and connect with them. She has been an invaluable resource for our family over the past several years and has helped us with everything from educational consulting, to uncovering diagnoses as well as family therapy. Working with Dr. Matheis never feels clinical and most importantly, our children love and trust her. We can not thank you enough Dr. Liz!"
- Anonymous
"My teenage son had been seeing Dr. Matheis through his senior year of high school, as he was only diagnosed with ADHD at 16 years old.  Dr. Matheis came highly recommended from our pediatrician and she has done wonders for our son as well as our family, navigating new ways for him to deal with his diagnosis without the use of medication.  She taught him ways to organize himself and even when something did not work for him, she patiently continued teaching him new ways to keep himself on track.  She has also helped us as parents to understand how his mind works so that we did not continue to blame his lack of focus on him, rather on his unique way of thinking.  Thank you Dr. Matheis!!!!"
- LG
"Dr. Liz is the best! Our family was directed to her by our Pediatrician to assist with figuring out severe mood changes, severe anxiety, strange new fears and food aversion that had come onto one of our children literally overnight. After just a couple of visits, she suggested that the issues may actually be rooted in a physical issue and suggested we immediately take our child to be swabbed for strep, because Dr. Liz suspected PANDAS (a pediatric autoimmune disorder brought on by strep). The same Pediatrician that suggested Dr. Liz would not do the swab (they do not believe in PANDAS and we no longer go there) but I took my child to my doctor who did the swab and it was positive for strep. When our child went on antibiotics, within 24 hours all symptoms went away and our child was back :-) Dr. Liz then recommended a PANDAS specialist who helped us and our child is in complete remission and is happy and healthy. We are incredibly grateful to Dr. Liz for her knowledge of all things, even the most remote and unusual and for helping us so much! Thank you!"
- Anonymous
"The various psycho-educational testing Dr. Liz conducted on our son gave us critical clues about where his learning strengths and weaknesses lie so that his needs could be better addressed at home and school. Moreover, because of their warm, kindhearted personalities, both Dr. Liz and her associate, Stephanie, formed an immediate bond with my son. He eagerly looks forward to his weekly therapy sessions. We are so lucky Dr. Liz came into our family's lives when she did! For stressed-out families trying to help their children as best they can, she is a calming voice of reason!"
- Anonymous
"Thank you, Dr. Liz. Although we have told you countless times, it will never feel enough. You have listened when J could barely speak and continued to listen when he was sad, angry and confused. You've challenged him and directed us in our roles as parents. You've helped J face his fears while the list evolved and changed, and yet you've stayed committed to 'the course.' We pray that your children realize that time away from them is spent helping children learn and that vulnerability is a sign of strength and bravery."
- June I
"My son was admitted to an Ivy League school when only 2 years ago, you assessed him and saw his struggles, his Dyslexia. We are grateful that he no longer has to carry that deep feeling of inadequacy or shame that must have kept him so self conscious and from reaching his potential. He has the PERFECT program for him. He has A's in high math and economics. He became a Merit Scholar, a Boys State legislature, the HEAD captain of the football team and help a job ALL while studying and managing his classes and disability. I am PROUD of you, a young doctor, who knows and sees the vulnerability of children and helps them recognize "it's NO big deal" God bless."
- Anonymous

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513 W Mt Pleasant Ave, Ste 212,
​Livingston, NJ 07039