Finding Peace in Your Choices: Embracing Decision-Making as a Parent of a Medically Complex Child

Written by Carolyn Smarszcz, BSN, RN

Updated on March 11, 2024

• Parents may be appointed as an adult child’s guardian if their child is unable to make their own decisions. 
• Use a consistent framework to collaborate and make decisions with trusted professionals. 
• Recognize the emotional strain of decision-making for a medically complex child.
• Learn to feel confident in your ability to make choices and find peace in your decisions.

As parents, we make daily decisions that impact our child’s future. Feeding practices, schooling, technology exposure, extracurricular activities—all of these important decisions are an expected part of raising a child. Through continued practice and instruction, the hope is that our children will be prepared to make sound medical and personal decisions once they reach legal adulthood.

Parents of medically complex children also make daily choices—some of which carry long-lasting impacts. However, for these parents, their role may not end when their child reaches legal adulthood. Instead, parents of an adult child who has special needs may continue to function in some form of decision-making capacity for life.

Holding the weighty, occasionally conflicting roles of parent, caregiver, and decision-maker can feel overwhelming and confusing. Is there a way to find peace and contentment through the process of making choices as a special needs parent?

With time, thoughtful preparation, and many conversations, parents of medically complex children can attain a measure of peace and find rest in the choices they’ve made on behalf of their child with special needs.

Who Can Make a Decision?

In the United States, parents’ legal authority ends when their child reaches 18 years of age. These young people have the legal capacity to serve on a jury, sign legally binding contracts, and make their own medical choices. 

Ironically, this freedom for adult children comes at a point where, developmentally speaking, they still need family input and supported decision-making skills as they face increasingly adult tasks and choices.

Decision-Making in Action

In the healthcare system, the child’s parents are usually recognized as the adults best qualified to make personal and medical decisions on behalf of their child. During adolescent years, it’s generally appropriate for children to be part of the decision-making process, while parents have the final say on the choice that’s made.

However, some children, such as those with some forms of autism spectrum disorder (ASD) or different types of developmental disabilities, will be unable to participate in the choice-making process.

In these instances, when an individual doesn’t have sufficient capacity to make their own choices, using an established court process to select an adult child’s guardian for personal, medical, and financial decisions is an appropriate move.

Create a Decision-Making Framework

At the center of all the decisions you and others make is your child. 

Using a mental processing system to organize information is helpful as you make choices that affect your child.

Here’s a brief review of what that process looks like for me:

Working through this process at first may feel overwhelming and time-consuming. Over time, I’ve learned that consistent use of my decision-making framework helps me organize my thoughts so that I can make choices I feel good about as a parent.

Collaborate with Professionals

At times, advocating for your children with special needs and their best interests will challenge preconceived ideas held by healthcare and/or educational teams.

It’s helpful to remember that you and these professionals share the same basic goals, which is your child’s highest level of health, learning, and success. 

Clear, respectful communication works well in these instances. There is often more than one way to solve the problem at hand, and creativity in exploring options is an important part of choice-making.

Looking Forward

Planning for the future while staying in the present is a delicate balance to strike when making decisions. As a parent, I want to position my child for success while also doing what benefits them today.

It’s helpful if someone on your child’s care team knows what milestones and goals will be asked of your child as they continue to grow with their respective diagnoses and can offer that information at key decision points.

Planning and decision-making efforts can then be proactive instead of reactive, which tends to benefit parents and children alike. 

Navigating the Emotional Landscape

There is a high emotional cost for parents of children with special needs as they continue making important decisions on their child’s behalf.

It’s important to recognize and tend to your own mental and emotional needs—for your sake, as well as your child’s.

One of my favorite phrases says it like this: You can’t pour from an empty cup. 

Manage Stress and Anxiety

Self-care is a vital practice, especially for parents and family members caring for medically complex children.

Practices that can ease burnout or help to manage the emotional burden may include:

• Mindfulness training.
• Relaxation practices, like yoga, meditation, or guided imagery.
• Progressive muscle relaxation (PMR)¹1. Toussaint, L., Nguyen, Q. A., Roettger, C., Dixon, K., Offenbächer, M., Kohls, N., Hirsch, J., & Sirois, F.. Effectiveness of Progressive Muscle Relaxation, Deep Breathing, and Guided Imagery in Promoting Psychological and Physiological States of Relaxation. Evidence-Based Complementary and Alternative Medicine. 2021;1–8. https://doi.org/10.1155/2021/5924040 .
• Respite care. Consider asking family members to provide this support while you run errands, take a nap, or simply spend some time away from your house.
• Parent support groups or online forums, especially those centered around your child’s diagnosis.
• Professional counseling or therapy. Sometimes there’s nothing like an individual whose sole job is listening and helping you unravel your thoughts.

Asking for and receiving support to cope with the emotional burden of a medically complex child is not selfish—it’s a necessary practice so that you can continue investing in your family in a meaningful way.

The Role of Self-Compassion

One of the hardest things I’ve had to learn as a parent of a child with special needs is how to forgive myself after I’ve made a mistake.

Whether it’s trying a new medication that didn’t work out or incorrectly applying a behavioral management strategy, it has taken a great deal of time and practice to extend compassion to myself.

At any given moment, we as parents are doing our very best in making personal decisions on our child’s behalf. 

Self-compassion is needed to avoid being paralyzed by fear, uncertainty, and guilt. It allows us to move forward, learn from perceived mistakes, and have the emotional reserve to keep making decisions for our children.

Embrace Your Role as a Decision-Maker

While making complex decisions for our children is never an enjoyable task, it does get easier with time and practice. Strength, confidence, and resiliency are built each time you embrace your role as a decision-maker and position you well to continue to make hard choices in the future.

Build Confidence in Decision-Making

By nature, these types of choices don’t have guaranteed outcomes. Many treatments and therapies are indeed successful, but that doesn’t mean they’re appropriate for everyone.

After researching reliable information and sources and consulting with professionals as needed, you can trust your ability to make a good decision. As your child’s parent, you know them best and will also know if your particular solution isn’t working.

Take time to celebrate each decision-making success. Learning to make hard choices, like learning to walk, is accomplished one step at a time and deserves recognition.

Understand the Weight of Decision-Making

Parents of children with special needs are often asked to make difficult decisions that will impact their child’s future without knowing exactly what that future will look like.

Said differently, if the choice you make today isn’t the right one for your family or your child, have you then prevented them from a positive future they could have had?

It’s a heavy question—and also one without a clear answer.

The key to making tough decisions, particularly in medicine, education, or developmental therapies, is that there can be more than one right answer and that (with few exceptions) you can change your mind at any point if the decision you made ends up not being the right solution for you or your child. 

Recognizing you have the freedom to make new choices can help parents of special needs children bear the responsibility of decision-making.

As parents, we are often tasked with making choices that have no guaranteed outcome. This is particularly true for parents of medically complex children. By doing our best to gather reliable information, process it well, and make a choice that is in keeping with our child’s best interests and family values, we can trust ourselves to have done well by our children and find peace in our decisions.

References

1. Toussaint, L., Nguyen, Q. A., Roettger, C., Dixon, K., Offenbächer, M., Kohls, N., Hirsch, J., & Sirois, F. (2021). Effectiveness of Progressive Muscle Relaxation, Deep Breathing, and Guided Imagery in Promoting Psychological and Physiological States of Relaxation. Evidence-Based Complementary and Alternative Medicine, 1–8. https://doi.org/10.1155/2021/5924040

The information WonderBaby provides is not intended to be, and does not constitute, medical or other health advice or diagnosis and should not be used as such. Always consult with a qualified medical professional about your specific circumstances.