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:
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.
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.
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.
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.
The good news: more and more extremely premature and medically complex babies are surviving. The bad news: there is a cost to the extended and complex treatment that saves their lives and helps them to thrive. This post is an effort to put out in the open what pediatric therapists know only too well goes on after the medical crisis (or crises) are over. Only when you know what you are seeing can you change it.
This is not an exhaustive list; it is a list of the major complications of a complex medical course of treatment on behavior:
Your child is likely aware that their coughing, crying, or other reactions will stop parents and even some medical professionals in their tracks. I have had kids who didn’t get what they wanted learn to hold their breath until they turned blue. If you have worked in medicine, you should know that if a child does this and faints, they will immediately begin breathing again. It doesn’t scare me. But it can terrify family members, teachers, and other caregivers. They will stop whatever they were doing and may give in to any demand right away. Many kids learn who will take the bait impressively fast. It is very damaging to a child’s relationships and destroys their ability to handle frustration.
Invasive treatments have been done while distracting your child and often without involving your child in any way. This has taught your child not to attend to an adult’s actions or words in the same way a typically developing child will do naturally. Since learning language and fine motor skills are highly dependent on observation, these skills are directly impacted by this consequence. This pattern can be reversed, but it is highly resistant and has to be addressed directly. Don’t think it will simply go away as your child recovers medically. It doesn’t. As soon as your child can be involved in self-care any way (holding a diaper, etc) you need to engage your chid and demonstrate the expectation that they respond and interact to the degree that they can manage. All the time.
Typical toddler attitudes are ignored because “He has been through so much already” If your child is kicking you while you change his diaper ( a real question to me by a private duty nurse) then you react the same way you would if your child didn’t have a G-tube or a tracheostomy. The answer is “NO; we don’t kick in this house”. You don’t get into why, or what is bothering them right away. The immediate answer is “no kicking”. Not now, not ever. Aggression isn’t unusual or abnormal, but it has to be addressed. With understanding and as little anger as you can manage as your beloved child is aiming for your face with his foot. The parents may be experiencing their own PTSD Can Your Pediatric Patient’s Parents Have PTSD? so be aware that their reactions may be coming from a place of untreated trauma as well.
Children who are unable to speak to engage you or able to move around their home will come up with other methods to gain and hold your attention. Some children throw things they don’t want and HOPE that you make it into a big deal. Or they throw to gain attention when they should be using eye contact, vocalization or signing. They wanted your attention, and they got it. Without speaking, signing or any other appropriate method of communication. This is not play, this is not healthy interaction. This is atypical past 10-12 months, and should be dealt with by ignoring or removing the items, and teaching “all done” or “no” in whatever method the child can use. And then teaching the correct methods of gaining attention and rewarding it immediately. The biggest roadblock is that if one caregiver takes the “throwing” bait, the child will dig in and keep using that method. Adults have to act as team managers, and if they fail, the behavior keeps on going.
Children can request being carried when they don’t need the assistance, but they want the attention. This can delay their advancement of mobility skills. One of my clients has learned which adults will hold his hand even though he can walk unaided. He likes the attention. The clinic PT doesn’t know this is happening, even though the family brings him to therapy. Like a game of telephone, each caregiver assumes that the child needs the help he is requesting. He is not developing confidence in his own home, which should be the first place to feel safe and independent. He depends on adults to feel safe. Oops.
In many ways, my job as an OTR is to alter some of these behaviors to allow normal development to take place. Long after those medical crises are terrible memories, the consequences of those days, weeks, months and sometimes years can have significant effects on learning and independence.