Accompanying You on Your Journey
This tool will help orient and support you as you navigate the ever-evolving needs of your child and the complex decisions that lie ahead. Here you will find both practical and medical information, and insights from parents and clinicians about the social and emotional experiences common to having a child with Severe Neurological Impairment (SNI).
The Arc of a Life
NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.
Follow along as you learn to adapt to a diagnosis, begin to build core skills and establish a baseline, adjust to the illness progression, and navigate the medical and emotional considerations as your child’s condition declines.
During your child’s life, you may find yourself moving back and forth between phases, straddling two, or even skipping a phase. Ultimately, regardless of its length, your child’s life will have a full arc enabled by much care and abiding love.
Adapting to Diagnosis
Collecting information, care and support as issues emerge for your child and your journey begins.
Maximizing your child’s core skills and family resiliency to develop a foundation for the journey.
Adjusting to Changes
Making decisions and adapting to your child’s evolving baseline throughout the journey.
Re-orienting goals and finding support alongside declines in your child’s condition, preparing you for the end of your child’s journey.
This column presents thoughts and perspectives from parents and clinicians. Rooted in concepts of palliative care, the content focuses on the well-being of your whole family as you travel the full arc of your child’s life.
Adapting to Diagnosis
Following the news that your child has a serious illness you may feel disoriented, afraid of what lies ahead, or even relieved. This phase is marked by information gathering. Resources in this section will help you anticipate your family’s medical, practical and emotional needs as you adapt to the new “normal.”
You are Not Alone
You know and understand your child best. Clinicians understand your child’s disease and treatment options best. Over time, you will assemble a team that will give you the tools and resources to help your child thrive at home, school and in the community.
During this phase you will work to strengthen your child’s core abilities, build family resilience, and establish goals of care to guide your decisions. Support from community services and an expanding clinician team will help you and your child bolster existing skills, foster new ones, and reorient as skills grow out of reach.
Being the Best Parent You Can
You want to help your child reach their greatest potential. This can feel challenging, even overwhelming, when there are so many things to consider and decisions to make. As you build your team and define your goals of care, you will become more confident in your decisions and feel you are doing the best you can.
Adjusting to Changes
Baseline is a snapshot of where things are when they are stable. Your child’s baseline may build upwards at first, but over time it will shift downward. Acute medical problems will arise, some of which can be addressed with an intervention that establishes a new baseline and period of stability. With each change, you will have support to help you consider new goals of care.
Baseline Helps You Understand Where Your Child is Now
You will likely be the first to see changes in your child’s baseline. It is helpful to consider the changes with your child’s medical team, so that together you can think about what decisions may be on the horizon. You may find that the more you are able to think and plan ahead, the more control you will feel over your situation
There may come a point where the pace of your child’s decline increases and the decisions feel more weighty. Goals of care conversations with your medical team will become more frequent, and planning for your child’s death will begin. Resources and perspectives from others can help you proactively choose the interventions that meet your care goals and help you feel more equipped as your child’s journey ends.
It is Possible to Thrive Even as Your Child Declines
Decline is difficult and sad, but acknowledging it will help you make decisions. Talking about priorities, hopes and fears will help you balance the benefits and risks involved in each intervention. As your child nears the end of life, you may worry that your child will suffer or that you will regret your decisions. Discussing your options with your team and planning ahead can be reassuring and empowering.
The palliative care approach strives to prevent and relieve suffering. Palliative care clinicians seek to identify and treat pain and other signs of physical distress early. They also identify and provide for the social, emotional and spiritual needs of the family. One way to better understand palliative care is to recognize that it supports all treatment options, whether curative, disease-modifying, or focused on comfort. Most importantly, palliative care supports a process of shared decision-making; helping parents know about all options and determining the ones that best fit with the family’s values and goals.
Baseline is really just a term for the new normal; where your child is now when things are stable. With children (or adults) living with a serious condition, the baseline shifts. Often it shifts down over time, like steps. While the ups and downs continue, the ups are, over time, not likely to be as high as they were, and the downs usually lower. Each lower step represents a lower level of function and, with a declining baseline, the final step is end of life.
Care Goals and Values
Goals of care encompass all the views, beliefs, and values that influence the decisions we make and the plans of care we follow. Goals of care can often change, or evolve, over the course of a complex condition. Taking the time to identify what is important can provide valuable guidance in establishing priorities and making decisions.
Along with the diagnosis of a serious condition comes a fear of the future, of loss to come. This fear and accompanying sadness is normal and important to name and recognize. The feeling of loss, even before it happens, is part of a process called anticipatory grief. The sense of anticipatory grief will come and go throughout your journey, and may even help direct you to the most appropriate care and support as you travel along your path.