Holiday Expectations for Parents of Children with Genetic Differences

Holidays and End-of-Year Hustle & Bustle

Ann Worley shares her advice on Holiday Expectations for Parents of Children with Genetic Differences.

If there’s one piece of parenting advice I could give almost universally—and especially to parents of kids with genetic or other differences—it would be to expect the unexpected. At no time is that more true than during the end-of-year hustle and bustle of the holiday season.

Think of how stressful the holidays are for us as adults. The lists alone are overwhelming: the holiday card list, the gift list, the party list, the food list, the ever-expanding “to-do” list. Sensitive kids feel our stress in addition to the heightened stimulation of colorful lights, competing superstores, and 24/7 Christmas music. Add in the home decorating, school performances, festive dress occasions, gift giving and receiving, and all-around extroverting, and we have a perfect sensory overload storm.

The first, best thing we can do (not only for our kids but also for ourselves) is to adjust our expectations to the reality of our child’s needs and development. Whether you’re planning to take photos with Santa, explore a local festival, or attend celebratory services in your community of faith, think through every aspect of the activity to anticipate potential pitfalls or surprises, and have action plans in place for likely scenarios.

Will you need to wait in line? Stand still or be quiet for an extended period of time? Will there be a large crowd? Will there be other children, and does that make it easier or harder? Is it a loud environment? Is there easy access to a bathroom? Will there be food available to accommodate your child’s dietary needs?

The challenges will be different from one family to another, of course, and the good news is, adaptive plans don’t need to be complicated. (So many things already are, am I right?) It may be as simple as bringing a pair of headphones, a fidget, or a snack, or planning an early exit for one child and some special friend time for another. One of our family’s go-to methods is to take two cars in case one of us needs to stay with our neurotypical daughter while the other plans an early exit with our son.

Adapting isn’t always our job or even the job of our children. Yes, it can be embarrassing when your child doesn’t behave “appropriately” in a given situation or has a difficult time in public, but sometimes society’s expectations are the ones that need to change. “Normal” is a spectrum! Neurodivergent kids (and adults) are not a burden to be tolerated but a population of people who have gifts to offer and lessons to teach. Sometimes our role as parents is to be ambassadors, modeling by our very presence the inclusion of our sons and daughters in all of our culture’s festivities. Maybe our child’s meltdown is an occasion for others to learn compassion. ’Tis the season, after all.

Planning ahead for the unexpected prepares us—not just physically but also emotionally—for all of the little things that could go wrong. As you consider your plans over the next few weeks, remember this: No one knows your child better than you do. No one. You are the expert. Whatever pressures you feel from society or your family or even yourself, you know best what is challenging for your child and how to adapt. Whether that means skipping an event altogether for your own sanity or having a working playbook for anticipated plot twists, trust yourself, and plan accordingly.

‘Tis the Season

Sometimes we get the most unexpected gift of all, and everything goes smoothly. When that happens, we can truly give thanks. That is my wish for all of you this season!

Ann Bell Worley is a writer, presenter, and mother of two children, one of whom has a rare XY chromosome difference as well as an elusive neuroimmune disorder. She is the author of two children’s storybooks based on Nurtured Heart Approach (NHA) and the creator of www.graycoloredglasses.blog, which focuses on the challenges of parenting a medically complex child.

Our Foundation specializes in X & Y Chromosomal Variation Disorders such as Klinefelters 47, Testosterone, Dyslexia, Dyspraxia, ADHD, and other Genetic Disorders. For more information please contact us or schedule a consultation at: thefocusfoundation.org/contact-us

If you have a child who has recently been diagnosed with an X and Y Chromosomal Variation and you need more information, contact The Focus Foundation:

dexy@thefocusfoundation.org
443-223-7323
www.thefocusfoundation.org