Tip #1: Take Care of Yourself First (Yes, Really You)
Parents and caregivers of children with upper limb differences often say that this is one of the hardest truths to hear: You matter just as much as your child.
It’s tempting to dive all in: to become the researcher, advocate, expert, appointment scheduler, and your family’s emotional glue. You want to give your child, family, everything.
But burnout is real, and nobody thrives when the parent is exhausted and overwhelmed.
Let’s reframe this: Taking care of yourself is part of caring for your child.
Here’s what that might look like:
Your feelings are valid
They’re all legitimate: guilt, anxiety, fear, sadness, joy, hope, amazement. Having a safe place to process your feelings isn’t selfish. Needing support also doesn’t mean you don’t love your child. Quite the opposite: sharing with a therapist, counselor, or trusted friend can help your child. In fact, research shows that children born with limb differences are harmed by parents’ depression and anxiety (Martens, et al., 2023). So getting help for yourself can help your child.
Find community
You don’t have to do this alone. Whether it’s an online group, a limb difference family weekend, or just one parent who “gets it,” finding someone to walk beside you makes a huge difference. Connecting with a family whose child shares your child’s limb difference (“hand twin” or “limb twin”) can be helpful both for you and your child.
Pace yourself
You don’t have to know everything all at once. Learn a little at a time, staying just a step ahead of what’s coming next. This is a lifelong journey, not a sprint.
Choose the supports that fit your life
Every family builds support in different ways. Some parents have strong extended family networks. Others rely more on community, friends, or professional support.
It can be helpful to think about support as a menu rather than a single solution. Different families choose different combinations depending on their needs and resources.
Examples of support might include:
- assistance from family or friends
- journaling, reflection, or meditation
- movement, sleep, and nutrition that support your own wellbeing
- therapy or counseling
Honest conversations to have now
Another important form of support involves honest conversations about how responsibilities are shared.
For example, proactively discussing questions with the important people in your life can lessen stress:
- Who attends medical appointments?
- Who manages scheduling and logistics?
- Who handles grocery shopping or meals?
- Who organizes school or social activities?
These conversations can help distribute both the physical and emotional load of parenting.
Care for your whole self
It’s okay to prioritize rest, nourishment, exercise, friendships, and joy. It’s also okay, and often even necessary, to say no to extra commitments.
Some permissions you may need: you don’t have to
- get it all right or do it all perfectly
- be on every board
- attend every event
- carry everything alone
Final thought
Your child needs a present parent, not a perfect one. The fact that you are taking the time to read this already says so much about how you’re doing a beautiful job.
Want more support?
Follow the rest of the Raising a Child with an Upper Limb Difference parenting series on Instagram
Read Understanding Limb Difference Language & Terminology
Access the Resource Directory
Learn about Bullying Part 1: Understanding Exclusion and Social Systems
Delve into Upper body strengthening tools for upper limb difference
Reference
Martens, S. A., Tuberty, S., & James, M. A. (2023). Self-concept development in children with limb differences: A scoping review. International Journal of Orthopaedic and Trauma Nursing, 49, Article 100997. https://doi.org/10.1016/j.ijotn.2023.100997
© 2026. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy. All rights reserved.