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.
What Are the Signs?
PTSD is an anxiety-based disorder that occurs when a person has experienced trauma, witnessed trauma, has been exposed to the details of a traumatic event experienced by another person, or by repeated exposure to trauma.
For parents of children with disabilities, they may be are re-experiencing traumatic events, sometimes through vivid recall of memories, maybe not every day, but several times per week. That re-experiencing can be sudden and without an obvious trigger. It can be due to an odor, a word or a color with which you have developed an association. The re-experiencing comes with intense emotions, such as guilt, fear or even anger. And because the re-experiencing can be so overwhelming, you may find that, as a parent, you try to avoid certain places, people, clothes, odors so that you just don’t go there.
You may also find yourself feeling hypervigilant or functioning at a high level of anxiety and arousal, which can result in difficulty sleeping, poor focus, and being easily startled. You may also feel irritable and worry about your safety and the safety of your child/children. Your spouse or other children may even perceive you as being easily frustrated or sounding angry often, but the truth is, you are spent.
These symptoms may result in difficulties in your daily functioning, such as:
Difficulty falling asleep.
Difficulty staying asleep.
Feeling tired but wired all day long.
Having a low frustration tolerance.
Feeling tearful or angry or both often.
Having a low appetite.
Eating to self soothe.
Not being able to enjoy social or leisure events as much as you used to.
Isolating yourself from others.
Feeling alone and not understood by other parents.
How to Get Help for PTSD
For families that are eligible, finding community and state-based resources such as Division of Developmental Disabilities (DDD) can offer respite care. That is, for a few hours per month, a DDD representative will take care of the child so that parents can have a break. (To find the DDD in your state, do an internet search with the terms “division of developmental disabilities” and the name of your state.)
For parents who feel distressed, seek help. Consult with a psychologist to help you process your emotions and your experience, and offer you support throughout your journey. If feelings of nervousness or sadness become overwhelming, it is OK to consult with a psychiatrist for anti-anxiety or anti-depressant medication. It is OK for parents to seek help for themselves instead of maintaining a 100 percent focus on their child.
If your child’s school offers parent support groups, participate in them. Talk to the other parents who are also experiencing the same types of stressors and emotions. Find solace in each other. Have play dates with each other. Offer respite to each other.