Can The Parents of Kids in Early Intervention Have PTSD?

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I wrote a post about the common complications seen with long-term neonatal medical issues The Subtle Ways Chronic Medical Care Affects Infant and Toddler Development, but the rest of the family isn’t immune to trauma reactions.  A difficult pregnancy or delivery, the shock of a unexpected genetic disorder diagnosis, or the crises that arise in the NICU all weigh heavily on parents too.

Most pediatric therapists aren’t seeing children in the NICU or the hospital.  We are in the home, the clinic or the school.  Acute medical issues are few and far between in these settings.  But the effects of trauma can continue to color treatment long after a child is medically stable.  What looks like a personality problem or a poor fit between therapist and a family can really be PTSD that hasn’t been acknowledged and treated.  Many parents are so focused on therapy for their child that they won’t even consider that they need to help themselves as well.  This should change.

I recently read a research study comparing the PTSD symptoms of parents with rare disorders like Ehlers-Danlos, Prader-Willi, and autism.  The parents whose children were aggressive or injured themselves, or had serious accidental injuries scored strongly on a standard PTSD scale.  If you have ever spent time with a child with these behaviors and wondered how their family handled it, well, it leaves emotional as well as physical scars.

The following are only a few of the common scenarios that can be the result of untreated parental PTSD:

  1. Parents who ask for a therapist’s guidance and then question the recommendations repeatedly.  When the medical picture changes rapidly in a crisis, and multiple doctors give conflicting recommendations or predictions, parents become gun-shy about anything any professional tells them later on.  Even though their experience with therapists may have been positive, the stain spreads around.
  2.  Families that withhold information from therapists, and may even resist open communication between team members.  See #1.  “Splitting” is a common response from people who are convinced that controlling other people protects them in some way.  It also sustains drama and focuses attention away from issues that are painful, such as the lack of a child’s progress or the final diagnosis.
  3. Signs of common illnesses create high levels of anxiety and agitation.  Parents that have witnessed resuscitation and emergency surgeries can become absolutely distraught over a URI.  The memory of a child gasping for breath or being unresponsive is so painful that a common cold brings it all back.
  4. Parents who are developing addictions or whose addictions are increasing in severity.  A mother who is anorexic, a father who is using prescription drugs or alcohol more frequently, or a parent who is spending more time online than is healthy may be responding to their pain in ways that are dangerous for them and their family.  If a parent is a trauma survivor, there are things that can help them handle their reactions to their child’s treatments: Are You a Trauma Survivor AND the Parent of a Special Needs Child?.

Parents are essential allies in therapy, and it is important to support them as well as our pediatric patients.  Some kind and compassionate words can go a long way, and even sharing this post with a parent may help them think about finding support to address the pain that they are holding onto, long after they have left the hospital.

Are you a parent of a medically fragile child?  Read How Parents of Medically Fragile or Complex Kids Can Cope  and  How OT Can Help Kids With Complex Medical Histories Heal From PTSD  .

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By Cathy Collyer

I am a licensed occupational therapist, licensed massage therapist, and certified CBT-i sleep coach in private practice in the NYC area. I have over 25 years of professional experience in adult and pediatric treatment. It has been a joy to help people of all ages improve their ability to grow and thrive! Occupational therapists are focused on enhancing a client's functioning in everyday life. We are practical healthcare providers, interested in teaching, adapting actions and environments, and building a client's useful skills for living their best life, regardless of their challenges. I am the author of five books, including "Staying In The Room: Managing Medical And Dental Care When You Have DID" and "The Practical Guide To Toilet Training the Autistic Child". I lecture on many subjects, including sleep, trauma, and development. Contact me to learn more about how I can help you achieve YOUR goals!

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