Finding a Balance Between Self-Care and Caretaking

Amanda Griffith Atkins is a licensed marriage and family therapist, author, and mother residing in Chicago with her husband and their three boys. Her life's mission took on new meaning when her oldest son, Asher, was born with Prader-Willi syndrome, a rare genetic disorder. Through her popular Instagram account, Amanda provides a much-needed space for parents of children with disabilities to openly discuss the challenges they face.

In this week’s episode of Conquering Your Clownfish, Amanda shares her experiences as a parent of a child with special abilities. She discusses the need to grieve the future you thought you'd have, the difficulty of living in a world not built for disabilities, and the importance of finding and building communities. Through it all, Amanda radiates positivity, compassion, and a determination to support other parents walking a similar path.

Acknowledging the Grief 

When her son Asher was born and later diagnosed, Amanda had to come to terms with a huge change in the vision of her family's future. She had to come to terms with her expectations and let them go. This was part of the grieving process and it is important to acknowledge those feelings so you can move on from them.

For Amanda, it was not a question of whether she loved her son or not. She absolutely does. But it's still important to grieve the dreams you had and had to give up. Letting yourself feel that loss doesn't make you a bad parent - it makes you human. 

Amanda pointed out that when we try to push away these feelings, they tend to grow and fester. We judge ourselves harshly and pile on shame. But if we can admit the hard stuff, even the things we feel guilty about, it actually frees us. There is space to hold both the immense love for your child and to acknowledge and let go of the frustration, sorrow, and worry. Allowing those feelings to coexist is healing.

Finding Your Community

One of the most transformative parts of Amanda’s journey has been connecting with other parents of children with special abilities. In spaces where everyone "gets it," parents have permission to be real about their day-to-day challenges. They can admit how hard it can be and be met with empathy rather than toxic positivity.

Amanda has been able to find and build up her own online community. Her vulnerable posts helped others experiencing the same things feel seen, understood, and less alone. Especially when parenting a child with a rare disease, it's so important to find your people. 

This could be through social media, local support groups, or national organizations focused on your child's specific diagnosis. Surrounding yourself with others who have had similar experiences to you can help you learn and adjust to your experience. It's also a way to crowdsource ideas, get advice, and problem-solve together.

Planning for the Future

Preparing for your child's future can be hard. There are so many more unknowns when your child will need more long-term care. Planning ahead for these things can be a source of empowerment for you and your child. When the time comes, if the time comes, you need to know what your family will need.

Facing the future can be intimidating, but by taking these precautions and preparative measures, you are setting your child and yourself up for success. Being prepared helps you feel at peace because, in the case of an emergency, you will not have to worry about what is going to happen. Every family is different, and preparing for the future will look different for everyone.

Amanda is learning to embrace that independence will likely look different for Asher than for a typical young adult. And while it's okay for her to grieve the milestones he'll miss, she recognizes her son is excited for this new chapter. Amanda is working on defining "success" and "fulfillment" in a way that makes sense for Asher's unique experiences. 

Prioritizing Self-Care

Parents and caregivers deserve self-care and self-compassion. So many parents pour everything into being the perfect advocate for their children, leaving little energy to tend to their own well-being. Caring for people does the most for you and others when you also take the necessary time to also care for yourself.

So what does self-care look like? Amanda recommends asking yourself these questions:

• What soothes and restores you? 
• What do you do for your child when they are having a tough time?
• What's the adult version of those comfort measures?

For some, it might be texting a friend, enjoying a favorite meal, taking a walk while listening to a podcast, snuggling a pet, or savoring a cup of coffee. It's not just about "treat yourself" splurges but finding accessible ways to reset on hard days.

If you're struggling to prioritize self-care, reach out for support. Connect with a therapist or close friend to brainstorm what self-nurturing could look like for you. Build it into your routine before you hit burnout. You can't show up for others if you're running on empty.

It is important to understand that it's not about staying stuck in the pain but about moving through it to find meaning and connection. We all need to give ourselves some grace. Caregiving is difficult work. It is not selfish or frivolous to tend to your own body, emotions, and spirit along the way. 

So, to all the parents of those with special abilities out there, take the time to honor your struggles and your needs. Find your community. Ask for help. Treat yourself with tenderness. And know that your love for your child and your worth as a parent is never in question, even on the hardest days. You've got this!

If you would like to learn more about Amanda and her experiences with Prader-Willi Syndrome you can learn more about her on Instagram @amanda.griffith.atkins