At some point, everyone will experience a negative event of such a significant magnitude that his or her perspective will change dramatically. Traumatic events are a part of life. What do you do when these events continue with consistent frequency and great force, continually changing your view of the world, of the people in it and of yourself? You learn to find happiness regardless of what happens, while finding ways to encourage others to do the same, especially those families who are just beginning to face the chronic traumas associated with raising children with special needs.
Trauma and Parents’ Post-Traumatic Stress
The use of the word trauma is not melodramatic metaphor. Sadly, the entry into the world of special needs can sometimes feel equivalent to experiencing a massive earthquake, for which there may or may not have been warning signs consisting of smaller non-disruptive earthquakes in a land of complacency. All at once your world is shaking, twisting, and tearing at the seams, your very foundation and everything you thought you could handle is at risk of tumbling to the ground in a pile of rubble. You stand paralyzed not sure which way to turn because no amount of earthquake training has prepared you for “the big one.” You debate whether you should find a sturdy structure to seek shelter under or abandon your existing perspective altogether and just run for the hills because that’s what feels instinctual, knowing that the first aftershock is almost as powerful as the original earthquake.
“The big one” is the life-shattering recognition that your child will not be “normal,” definitely not the child you dreamed of, and likely not the child that you imagined you would share your favorite activities with or delight others with stories of his typical accomplishments. The “first aftershock” is the realization that not only is your child not going to be the same child you expected, but also that your family life will not be the same. Your negative emotions intensify as you watch the happy dream of a family as squeaky-clean as the Cleaver clan fall into the surface cracks created by “the big one.”
Just when you think you have accepted these two events and managed not to run to the hills, you continue to experience many more aftershocks. These aftershocks are the realization that your support system will not be the same. Destructive jolts shatter your perceptions of a “normal” social life for your child and your family, while you watch one by one the friends you thought you had chosen well (and sometimes family) gathering their supplies and running away from you. You are not immediately sure why they are running away, but in the moment it feels as though they think that either you somehow caused (or deserved) this natural disaster, or that staying around you puts them at risk for experiencing a similar traumatic event in their lives. Even if they are wise enough to recognize that you are not to blame for the random event and their risk has not increased, they may feel that witnessing your challenges is a constant reminder that they are not safe from such trauma. Furthermore, because witnessing the aftermath of trauma is hard to bear, many move into self-protection mode. You aren’t surprised because you are doing the same with unsure footing, barely able to respond to any efforts to see how you are doing because your landline has fallen and your cell service is spotty.
When the fog-creating dust settles and the nerve-shattering aftershocks of every real or imagined loss (that felt like the “big one” all over again to your hypersensitive nerves) have subsided, you survey the damage to your stronghold. You’ve got big ominous looking cracks in your foundation, walls and ceilings, but somehow you survived. Yes, you are a right mess…you are covered in the dust of the destruction and it has been a while since you have had a good night’s sleep or possibly even a healthy meal. Hygiene and other minor aspects of your own personal health are the least of your concerns as you try to gather supplies and support to get you through the aftermath of your personal disaster.
Special Needs First Responders
That’s when you learn that not everyone you knew ran for the hills. Instead there are a few steady hands—some of whom are special needs first responders—ready to help you shore up your foundation again, put spackle in the cracks and help you secure your shelves to the wall to help keep loved ones and belongings safer from any additional perspective-changing earthquakes.
The special needs first responders are families who have had their foundation similarly shaken before, even if for a different reason. They give you their mobile phones along with the language to reassure yourself and others that you will be okay. You seek their help for how to manage the flashbacks of the traumatic event that shook your world. They share advice on how to manage the other post-traumatic stress symptoms, such as hyperalertness to possible recurrence and intense emotions triggered by reminders of losses, that may surface when you least expect them. They demonstrate that it is possible to take life day-by-day, and to celebrate the inchstones your child will accomplish instead of focusing on all the milestones that you perceive he won’t be able to achieve.
Chronic Trauma and Parents’ Personal Reconstruction
Then comes the Tsunami that always seems to follow “the big one,” swelling up a new wall of overwhelming fear before it comes flash flooding through your world. It exposes vulnerabilities you did not know existed and makes you think you should have run for the hills. The Tsunami is possibly an unclear medical condition or a change in functioning that you weren’t expecting your child to have to deal with and have no idea how to manage. It washes away individuals who really wanted to support you but are unable to help you manage another life-shattering event due to their own limited medical understanding (new clinicians are often required), distant personal responsibilities or emotional struggles from their own unique battles.
Again, you are not surprised as you watch the cracks in your own walls that were created by the last earthquake and that were only cosmetically sealed become mini-waterfalls. You reflect on this interesting visual until the dry wall is saturated with liquid, the walls seem to melt and the fortress you thought you rebuilt seems to start floating away with new tears. But again, you survive.
Having survived the Tsunami sufficiently waterlogged, you and your family are forced to find a new community in which to restructure yourself, your family and your connections with friends. In some cases your well-established streetlights and connections to the regular world remain intact in your old community because they do not take your lapses in contact mid-trauma personally. They know that despite the restructuring and relocation, your values are still the same, and recognize that you can stop dredging up floodwater when needed to laugh together at your respective shared foibles in life.
Special Needs Emergency Planning Committee
If, however, your old connections are lost, you also discover that there are families who face similar medical conditions or functioning challenges in the new community, and that they are more than willing to provide the support you may have lost after each perspective-changing event. This finding is particularly encouraging because at this point you are starting to think you are indeed “Calamity Jane” and have secretly resolved to lay in waiting for the next unexpected event. Together you share medical and educational battle stories, laughing at unusual interactions between your medical world and the regular world that you felt compelled to explain to avoid trouble with the authorities.
Within this new community you discover resources you did not expect: shared wisdom and shared emotion. The support is so powerful you find that over time it helps you grow stronger and more able to provide similar assistance to others who are just joining the community. You are also surprised that it doesn’t faze you as much when the next personal disaster, the equivalent of a Tornado, is threatening to tear through and destroy your stronghold. The Tornado is possibly a sudden lengthy hospitalization, which stemmed from a doctor’s visit. Once they learned about your upcoming admission, the special needs first responders on your new emergency planning committee showed you ways to track the storm and both predict and potentially reduce its impact on your stronghold by arranging for extra caregivers for siblings and pre-made meals to cover your family’s needs. You gather your supplies and bunker down in your fully stocked shelter experiencing managed anxiety as you wait for the eye of the storm to hit. Afterward, you surface slowly taking care to avoid any new unexpected sinkholes and to assess the damages. With a better grasp of the situation, you use your new resources to help guard your family’s quality of life and decide whether to rebuild where you are, or once again relocate to the next medical or educational support community that meets your needs.
Once you have recovered from each subsequent perspective-changing event. you take time to reflect on your experiences. Although you don’t want to be experiencing repeated perspective-changing events, you are starting to recognize that each challenge is part of your child’s legacy, a living gift to educate the medical community and your child’s family, friends and community of fans (some of whom are in the non-special needs community) on what matters in life. The legacy alone is empowering and inspiring, helping give you a little more strength as you both prepare for other perspective-changing events, and help as many people as you can in and outside of your immediate community manage crises that develop in their lives.
You are a little amazed at how your experiences encourage you to instinctively keep an ear out for similar traumas other families may be experiencing in your community, sharing your knowledge to help them cope with potential negative outcomes and celebrating surprisingly positive outcomes. Such supportive efforts earn you your own special needs first responder badge and you wear it with pride, a strong reminder of your ability to make a difference as a member of the emergency planning committee in your community.
Now a bona fide member of the emergency planning committee, when the next traumatic event looms on the horizon, threatening like a wildfire to scorch your home, you say, “We Got This!” The wildfire is possibly the need for surgery, and you are prepared for this need as much as possible. With the help of the many first responders in your community you have done your research and created a fire-safe landscape by establishing in advance both the conditions that necessitate surgery and post-surgery pain management procedures. Furthermore, like a ranger, most of your anxiety about any fire-related uncertainty is managed knowing both that after a fire there is always new growth and recovery, and that a prescribed fire can burn away the underbrush and prevent a more dangerous uncontrollable fire.
The only event you are never fully prepared for is the final medical trauma, the early loss of your child (no one ever is). However, you know that when it happens your community members will rally around you, lifting you up out of the darkness by doing their best to remind you of the joys you experienced in the midst of all the perspective changing events you faced. That’s how the first responders of the special needs community roll.