Caring for a Child with FOXG1: Avoiding Caregiver Burnout

The Emotional and Physical Demands of FOXG1 Caregiving

Caring for a child with FOXG1 syndrome is a journey filled with love, dedication, and resilience. As a parent or caregiver, you give so much of yourself to ensure your child’s needs are met. But amidst the therapies, doctor visits, and daily caregiving responsibilities, it’s easy to forget about one crucial person—you.

Avoiding burnout isn’t just about self-care; it’s about sustaining your strength so you can continue to provide the best care for your child. Here are practical ways to protect your well-being while caring for your FOXG1 warrior.

Recognizing the Signs of Burnout

Constant exhaustion (physical and emotional)

Caregiving is a 24/7 responsibility, and many parents find themselves physically drained from lifting, repositioning, and attending to their child’s complex medical needs. The emotional toll can be just as heavy—worrying about the future, managing daily medical decisions, and balancing everything at once can leave you feeling depleted. If you wake up already feeling exhausted or struggle to get through daily tasks, it may be a sign of burnout.

Feeling overwhelmed or emotionally detached

Do you ever feel like you’re on autopilot, just going through the motions? Burnout can make everyday responsibilities feel overwhelming, leading to emotional detachment as a coping mechanism. You might feel disconnected from your child, family, or friends, or struggle to find joy in activities you once loved. This is a sign that you need support and a break to recharge.

Increased frustration, sadness, or anxiety

Caregiving comes with a rollercoaster of emotions. Feeling irritable, constantly on edge, or breaking down into tears more often than usual are signs that your emotional reserves are running low. Anxiety over medical decisions, uncertainty about the future, and the constant demand to advocate for your child can create overwhelming stress. Acknowledging these feelings is the first step in addressing them.

Difficulty sleeping or constant worry

Many FOXG1 parents experience interrupted sleep due to nighttime caregiving, medical equipment alarms, or simply the stress of worrying about their child’s well-being. Over time, sleep deprivation can take a serious toll on your mental and physical health. If your mind races at night with worries or you feel like you can never fully rest, it may be time to seek strategies for support and rest.

Neglecting your own needs and interests

When was the last time you did something just for yourself? Many caregivers put their own health, hobbies, and social connections on the back burner, focusing solely on their child’s needs. Over time, this can lead to resentment, loss of identity, and an overall decline in well-being. Reconnecting with activities that bring you joy, even in small ways, is essential for long-term caregiving resilience.

Self-Care is Not Selfish

Many parents feel guilty taking time for themselves, but self-care is essential, not selfish. Even small moments of self-care can help you recharge. Try:

Taking five-minute deep breathing breaks

When emotions feel overwhelming or stress builds up, take just five minutes to breathe deeply. Try inhaling for four counts, holding for four counts, and exhaling for four counts. Deep breathing activates the body’s relaxation response and can help clear your mind, even in the middle of a chaotic day.

Listening to music or a podcast during downtime

Even if you can’t step away for long periods, putting on music or a favorite podcast while feeding, dressing, or sitting with your child can be a simple way to engage your mind and lift your mood. Audiobooks, guided meditations, or uplifting playlists can provide a moment of escape or inspiration.

Practicing gratitude by writing down one positive moment each day

Caregiving is full of challenges, but focusing on small wins can help shift your mindset. Each night, write down one good moment—whether it’s your child smiling at you, a therapy session going well, or simply making it through a tough day. Over time, this habit can help cultivate resilience and positivity.

Prioritizing sleep as much as possible (even short naps help)

Sleep deprivation is common for FOXG1 parents, but getting rest where you can is critical. If full nights of sleep aren’t possible, aim for power naps when your child is resting. Even 10-20 minutes of sleep can improve focus and mood. If possible, enlist a partner, family member, or respite care provider to give you a break for rest.

Building a Strong Support System

You are not alone in this journey. Lean on those around you:

Family & Friends

Let them know specific ways they can help, like babysitting for an hour, assisting with household tasks, or providing emotional support.

Parent Support Groups

Join a FOXG1 parent group to connect with others who understand your experience, including the unique challenges of caring for a child with physical and communication impairments. FOXG1 Parents Connect Facebook group is a great one to join!

Therapists or Counselors

Speaking with a professional can help manage stress and emotions.

Respite Care

Look into respite services that can provide short-term relief when needed.

Setting Realistic Expectations

You don’t have to do everything perfectly. Accept that some days will be harder than others, and that’s okay.

• Prioritize what’s truly important and let go of less urgent tasks.

• Ask for help when needed—whether it’s with childcare, medical decisions, or daily responsibilities.

• Celebrate small victories, both for your child and yourself.

• Adapt routines to fit your child’s needs—whether that means extra support for mobility, alternative communication methods, or sensory-friendly activities.

Finding Moments of Joy

Even in the busiest days, find ways to connect and enjoy moments with your child:

• Play their favorite music and enjoy the songs together

• Engage in sensory-friendly activities, like soft-touch play, water therapy, or visual stimulation

• Take a break outdoors for fresh air, even if it’s just sitting together in the sunshine

• Capture special moments through photos or journaling

• Take time to appreciate the strength and love in your family

Advocating Without Exhausting Yourself

Advocacy is important, but it shouldn’t come at the cost of your well-being. Set boundaries on how much time you dedicate to researching, fundraising, or advocating. If your child has complex medical needs, consider keeping a medical binder or using a communication app to help organize information without feeling overwhelmed.

Remember: You Are Doing an Amazing Job

Every single day, you show up with love and dedication. You are your child’s greatest advocate, protector, and source of comfort. Give yourself grace, acknowledge your hard work, and know that you are not alone.

Final Thoughts

Avoiding caregiver burnout is an ongoing process, but small changes can make a big difference. Prioritizing your well-being allows you to continue being the incredible caregiver your child needs. You are part of a strong, supportive community that understands your journey.

💕 If you need support, reach out. You are never alone in this. 💕