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.