As a parent, it is your worst fear: your child sustains a life-changing injury. It doesn’t matter if they are in their first year of life, or their 51st year of life, your child is always your child. However, when a child, teen, or young adult sustains a traumatic brain injury (TBI), parents can find themselves in the situation of going back in time and caring for and raising their children, again. Depending on the severity of the injury, professionals often help others understand the impact on the brain by stating the age of the individual’s brain post-injury. For example, he is 34, but mentally is about 12-13 years of age. As we understand human development, the mind and body have certain checkpoints along the way to maturity, but a TBI can interrupt those developmental milestones, leaving families with many questions. What will puberty be like? Will they be able to live alone? Will they have a job? How will they build relationships and a community of support?
Navigating a Crisis
After a serious trauma, a young person’s parents are usually the ones to manage the initial crises, make medical decisions on their behalf and think about the long-term care needed in the home. They are also usually the first to jump into the role of caregiver meeting everyday needs. With a severe injury, it is common that a special needs trust and guardianship will need to be set up to coordinate and pay for the long-term care needs.
The logistical needs alone can be overwhelming, but the grief and heartache that parents undergo can make the urgent decisions and tasks a debilitating experience. We often association professional geriatric care managers with being experts in eldercare, but they also specialize in the long-term care of chronically ill persons or those with a range of disabilities. As a parent, their crisis management skills make them just the type of professional you want supporting you and driving your care team.
If you are a parent caring for a disabled, injured, or chronically ill child, here are a few tips from the experts:
- Take Care. You can’t take good care of your child if you aren’t taking good care of you first. Parents are at a huge risk for burnout as caregivers and will often go long periods of time without a break. Finding reprieve to make sure caregiving is sustainable.
- Attend to Your Own Trauma. The focus may be on the changes your child has experienced, but it is important to pay attention to your own trauma and grief and process your own experience of events. Seek out a counselor who can help you find healthy coping strategies and a self-care routine, especially as your family roles are in flux.
- Build a Good Care Team. There will be many professionals involved from doctors and therapists, to attorneys and trust officers. Choose professionals that are adding positive outcomes, good communication, expert guidance and support to your family. Choose a Care Manager to head up your care team who can act as a liaison between the different members, create a long-term plan of care, navigate the healthcare maze, coordinate appropriate long-term care, and make sure the living environment is adapted and safe.
- Seek Out Professional Resources. The more you know about the impact of an injury on your child the better. From how they relate to others and communicate, to their self-awareness and emotional regulation, your child will need help navigating their changes in personality and body. Seek out professionals, resources, and organizations that can give you the tools to help your family and friends become educated and intentional in the way they support your child.
- Find a New Normal. Rebuilding life after a trauma can seems impossible, and if you’re constantly trying to get back to way things were, it will be. Part of what it means to successfully adapt to trauma is to find a new normal that balances the challenges and grief with aspects that are life-giving, and joyful. If you are able to highlight positives and daily successes, you can help your child focus on those good things as well. Introduce a new family routine. The stability and predictability will help increase functioning and calm for your child.
- Help Your Child Tell the Story. In the midst of a crisis, it can be difficult to even know what day it is, but it is important to keep track of the unfolding story. Helping a child understand what has happened to them and significant dates and events helps place themselves in their journey of recovery and adapt their identity. You might keep a journal, take photos, and even invite friends, family, and professionals to record their love and support. How we tell the story of what has happened to a child dramatically impacts how family, friends, and community members respond and engage in the story.
- Help Others Help You. While community members, friends, and family may not be able to help with complex caregiving tasks, there are so many daily tasks that can easily be delegated. One of the greatest gifts that you can give to those close to you in a crisis is something that they can do, some tasks that they can put their energy into. This might look like pre-made meals for the family, help with transportation, a load of laundry, a grocery run, making phone calls to key people, or caring for the house and pets while you’re at the hospital. Keep a running list of needed tasks so you’re ready when people ask, “What can I do?”
If you are a parent caring for a disabled or chronically ill child, you’re not alone. At Sound Options, our team of RN and MSW Care Managers partner with certified nursing assistants to help families rebuild a quality life and find a new normal. From giving parents reprieve to guiding a plan of care at a high level, we are known as much for our expertise, as our compassion.
A Mother Finds Reprieve: Success Story
“Sound Options came highly recommended to us. I appreciate that they provide me with rest, which I need. The caregiver shows her good work ethic by her willingness, friendliness, and intelligence toward my son. She is very accepting and open with him and is very trustworthy and not reluctant to follow my regime on how to care for him. I can tell that she has life experience and I think that this is just as important as sitting through a class. The caregiver shows real humanity toward my child and treats him as an important individual.
We started off slowly into the services because we did not want to bombard my son with too much change. I noticed after the second week that he felt connected with the caregiver. We are very family-oriented people and so is the caregiver that we have. That is really important to us. I have felt like I have known the caregiver my whole life, and I feel fortunate to have her with us. Everyone I met and talked to from Sound Options is very professional, helpful, and on top of things. They match people up well and have good follow-through and communication.” –Mother of Client
Published on July 15, 2015.