Recent studies have shown that parents of kids with special needs are at a greater risk of developing Post Traumatic Stress Disorder (PTSD) than are parents of typical kids. Over the next weeks, Different Dream will address the subject of PTSD and parents of kids with special needs. In today’s post guest blogger, Dr. Liz Mathies offers information and advice to parents who suspect they have PTSD about how to manage day to day.

Stress, PTSD and Parents of Kids with Special Needs

As a professional, the initial phone call comes with a focus on the child with Autism Spectrum Disorder (ASD). However, I have often asked during our first appointment, “How are you, as the parent, doing?” Several parents have looked at me somewhat crooked and have said either, “Fine,” or “No one has ever asked me how I’m doing.” As a parent of a child with ASD, the process of gaining a diagnosis and then living and treating can be overwhelming and often traumatizing. With that said, it is safe to say that many parents of children with ASD are suffering from Post Traumatic Stress Disorder (PTSD).

What Is PTSD and 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, such as a trauma professional. Signs and symptoms include: flashbacks, nightmares, inability to concentrate, prolonged distress, and physiological reactivity (that is jumpy or hyper-vigilant).

How Does a Parent Develop PTSD?

For the parent of a child with ASD, the initial trauma comes from realizing that ‘something isn’t right’ with her child, researching, and ultimately gaining the diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the child that he thought he would have. The next phase is gaining treatment and not being entirely sure how it will work and what the outcome will be. Then, adolescence hits and some children with ASD become aggressive. Some kids have been aggressive all along. As a result, parents are left defending themselves, hiding bruises, and staying at home so that ‘no one else’ can witness the physical aggression. This becomes even more complicated when there are other children in the home who parents struggle to give attention, nurturance and time to but can’t because taking care of a child with ASD can sometimes be a 24 hour job.

Raising a child with ASD can also take a toll on a marriage. Parents are left to care with little time for themselves as a couple. Finding someone else to care for the child is difficult. That caretaker or babysitter needs to be trained and be okay with some physical aggression and meltdowns. 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 with ASD, meaning that money can be tight, which is another source of distress for parents. Sometimes the marriage doesn’t survive.

Parents are also left anticipating what might trigger their child and are constantly accommodating and modifying the environment to help their child to stay calm or regulated. As children with ASD get older, some parents of children who are aggressive have to make a very tough decision about whether or not to find a residential program.

Throughout this process that takes place over years and years, parents become burned out, distressed, anxious, depressed and sometimes even feel hopeless and helpless.

How to Gain Help for PTSD

For those families that are eligible, finding community and state-based resources such as Division of Developmental Disabilities (DDD) which can offer respite care. That is, for a few hours per month, a DDD representative will take care of the child with ASD 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 okay to consult with a psychiatrist for anti-anxiety or anti-depressant medication. It is okay for parents to seek help for themselves instead of maintaining a 100% focus on their child with ASD.
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.

Your Experience with PTSD and Parents of Kids with Special Needs?

If you have advice for stressed-out parents of kids with special needs or if you think you have PTSD, leave a comment in the box below. You can also contact me via email using this form.

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