It’s a beautiful thing to have a day filled with peaceful joy, but oftentimes when your child has a diagnosis of CDKL5 Deficiency Disorder, a holiday can feel anything but peaceful or joyful. Unfortunately, sometimes what should be a special day can feel emotionally and/or physically draining.
So, what can we do to survive holidays with CDKL5?
In our latest podcast episode (episode 2 - Let’s Talk About Holidays), we dive into how we manage these special days in our families. Spoiler - it’s giving ourselves and our children a lot of grace and leaning into what works for our unique life instead of holding on to traditions that don’t serve us.
Do you struggle with any of these holiday stressors?
-Changes in routine. Often our kids (and our households) thrive on routines. A holiday by nature is special, and it can be a whirlwind that is difficult to handle when you have med times and bedtimes, and are missing the support of a school day. Some advice: try to keep as close to your normal routine as you can, if that’s what works for you. It’s ok to work around your family’s schedule, even if it means leaving events early or arriving late.
-All the commotion. Our kids with CDD can struggle with sensory issues and this can include the bustle and hustle of holidays. Not to mention the different smells and sights. People with cortical visual impairment (CVI) may have trouble navigating new environments visually, causing them to meltdown or shutdown. Some advice: take breaks, bring comfort items, and scout out a place for your child (and you) to have some down time.
-Social expectations. It is hard for even a typically developing child to meet the social expectations of a holiday, and some family members who don’t know your child well might be less than understanding of their unique needs. Some advice: let go of the pressure to be what others expect or spend holidays with people who are understanding and supportive.
-Disappointment. In this life we know disappointment well, but it doesn’t mean we aren’t still impacted by feelings of sadness when our hopes go unfulfilled. Some advice: let yourself feel however you do and take time to reflect. Practicing gratitude for even something small can help you feel better.
-Feeling isolated or left out. Sometimes not attending a gathering or event is how it has to be, whether due to inaccessibility, health issues, or whatever other reason. Some advice: know you’re not alone. Reach out to a fellow caregiver for support and understanding. We’ve been there.
-Gift-giving. It can be hard (and expensive!) to buy gifts for our children with CDKL5. Some advice: get recommendations from fellow special needs families. Keep a running Amazon list that can be shared easily. Focus on quality over quantity and know that non-traditional gifts (like balloons!) may be just fine!
Caregiving in and of itself is tiring and sometimes the extras of a holiday can be a really heavy lift. Take it moment by moment and know that doing your best is sometimes just getting through.
Until next time 💚
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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.
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