Holiday Survival for Moms of Kids with Special Needs

I love everything about the holidays—the weather, the music, the food, the decorations, the gifts…You get the idea. I also (of course) love my son, Joey. My sweet, amazing, hilarious, ornery, fabulous son. He brings me joy every single day. He also has Down syndrome, and he totally rocks that extra chromosome.

It would seem logical that the combination of two things I love this much would result in endless fun and joy and magic and wonder, right? As it turns out, that’s not quite the case. In fact, here’s the basic equation:

Joey + holidays = (stress + tears + mom guilt) x 1000 + a fair amount of sweating.

It’s not pretty.

Joey, of course, doesn’t ruin the holidays or anything like that. It’s just that he—like many kids with special needs, sensory issues, and the like—thrives in settings that are familiar and have clearly defined boundaries. And the holiday season thrives on magical moments involving out-of-the-ordinary, well, everything. New people, new places, lots of excitement, and many skipped naps or late bedtimes. It can be a tough combination.

After years of banging my head against the wall, I finally realized I shouldn’t be surprised when I ended up with a headache. If I wanted the holidays to be less painful, I needed to make some changes.

So in the spirit of happy holidays, let me share with you a few rules I have given myself to help me get through the most wonderful time of the year. I hope they are helpful for you too.

1. Be picky. From mid-November through the first week of January, we could probably attend some sort of fabulous event every single weekend, but should we? Moms, it’s okay to be picky about our holiday “yesses”—even (gasp) for family parties. Believe it or not, we do not attend every family gathering thrown in the months of November and December. It can be hard to opt out, but our kids and our sanity are worth it.
2. Evaluate your motives. Yes, a ride on The Polar Express seems like it would top every kid’s “must do” list, but does it really? Joey’s idea of fun isn’t always what I expect, and it’s okay for him to be different from other kids. It’s important to evaluate some of our commitment decisions based on who our children are.
3. Make alternate plans. My husband and I have been known to “divide and conquer” if there’s a can’t-miss event that might be too much for Joey. One of us will head to the party solo, the other stays home with any kids who wish to remain behind. And if the party is just too much to take on but you can’t stand missing the chance to see your favorite cousin, consider inviting her over for breakfast the next day. You’ll get to enjoy more quality time that way, anyway!
4. Come prepared. Does your child have a favorite toy or activity? Bring it. Having something familiar in a new environment can go a long way in helping a child settle down. I’ve even been known to bring the iPad along, because sometimes desperate times call for desperate measures. If it saves you sweat and tears, it’s worth it. The same rule applies to food. A party full of people and excitement may not be the time to draw a line in the sand and say, “You will eat this because everyone else is!” Pack a few snacks you know your child will like, then just make like Elsa and let it go.
5. Find a panic room. Parties can be a lot of stimulation for any kid (or adult), but especially for our kiddos with special needs. Sometimes your kiddo might just need to find a quiet room for a while to recharge his or her batteries (maybe with an iPad or toy from home). And to be honest, sometimes I need a place to escape the stress of the party, the well-meaning advice and comments of my fellow party goers, the (obviously) perfect behavior of everyone else’s children, and the judgment I perceive to be oozing from the other moms.
6. Build your team. If I’m going somewhere without my husband, I often call one or two people ahead of time and say, “I’m nervous about this party, because I don’t want to feel like I’m off by myself with Joey the whole time.” I’ve found my closest friends and family members are happy to keep me company if Joey needs to play in a quieter area for a while, or to help my older kids with whatever might come up so I don’t feel the stress of being a “bad mom” while I’m trying my hardest to be a good one.
7. Have a code word (or two). My husband and I usually have a code word or phrase in case one of us needs a break from chasing Joey. Often it’s as simple as, “Tag! You’re it!” And we have a second code that says, “I can’t do this anymore; we really need to get out of here!” Sometimes that comes from me (“Honey… LEMON TREE! LEMON TREE!” Anyone remember “lemon tree” from “Seinfeld”? Anybody?), and sometimes it’s my husband’s way of checking on me (“Hey Sweetie? Did you need to go check on our lemon tree?”). It’s a bit silly, yes. But sometimes even saying a silly word or phrase can help to defuse a tense situation, and I am amazed at how much easier it is for me to say a code word than to actually say, “Honey, I’m sorry, but I really feel like we need to leave now.”
8. Adjust your expectations. The holidays are wonderful, and parties and activities can be great… but they are not the last word on the most fun you will ever have. It’s okay to say no to things; it’s okay for our kids to not have a magical and wonderful experience at every event; it’s okay to leave early; it’s okay if things don’t go exactly as planned.

[Tweet “Just take a deep breath, do what you can do, and let go of the rest.”] You’ve got this, moms!

Katy Epling is a writer, speaker, and “masterpiece in progress” (Ephesians 2:10) from Akron, Ohio. She and her husband Jon have three beautiful children who provide her with multitudes of material—both dramatic and comedic. Learn more about her heart and ministry at katyepling.com.

Photograph by, Strecosa.