By Kate Sondgerath, Health Information Specialist, Family Voices Indiana
Each year around this time, my husband and I get a little restless. While family and friends are excitedly planning for the upcoming holidays, we fret about them. Our parents may have had some inkling of anxiety about the holidays—but nothing like this. Having a child on the spectrum means life is unpredictable. Holidays do not resemble a vacation in any way, shape or form. Regardless of travel plans, holidays mean no school and no schedule. The universe is out-of-sync for our entire family.
Our son, Tommy, is 13 years old, and he has autism. We have been through the holidays a few times, and we have learned some lessons. First, we must plan ahead. That means we talk to Tommy about our plans for the holidays. Actually (if we’re honest), he’ll begin asking about holiday plans in July. Where are we going? Where are we staying? Are we driving? Pretty typical questions. His forethought may show maturity and understanding, but no amount of planning can eliminate uncertainty.
Last year, we stayed with my father for Thanksgiving. One morning during our visit, the carrot nose on Tommy’s Olaf toy lost some of its orange color (he always had it in hand—it was his favorite!). Cue tantrum. If we were at home, we would have been able to calm him down. I longed for the orange Sharpie used to touch up that carrot nose. But, I’d failed to consider every contingency. So, lo and behold, full-blown meltdown. We tried to contain Tommy in Dad’s laundry room during the meltdown. He was on the floor writhing and kicking. Things escalated, and he kicked a hole in the drywall. Tommy immediately knew he had made a very grievous mistake, and so, the screaming got louder. Fun times.
Dad is old school. When Tommy was diagnosed with autism, he’d say, “All I know about autism is from the movie ‘Rain Man.’” But, since then, Dad has read everything he can about autism. Prompted by “60 Minutes” pieces and news magazine articles, he calls me to ask, “Have you read this? Would this help Tommy?” When Tommy was having the tantrum in the laundry room, Dad was just outside the door. I knew he was worried about all of us–Tommy, my husband and me. When we told him about the baseball-sized hole in the wall, he took it in stride. He asked if we’d thought of a way to make Tommy feel more included in the family activities. He mentioned playing cards or another game. Dad knew that when at his house, especially at Thanksgiving, it is all about football. Football is what we watch and what we talk about but not among Tommy’s preferred activities. Did Tommy have his meltdown because he didn’t feel included? See, Tommy likes to talk about Disney movies, iPad games and what the next McDonald’s Happy Meal toy will be. In other words, family has to make special efforts to engage Tommy.
The holidays require a tremendous amount of adaptability. Parents learn this quickly. When Tommy was five years old we tried to attend Christmas morning mass. Early in the service, we realized Tommy wasn’t going to have it. My husband took him to McDonald’s. Hubby enjoyed a Christmas Big Mac and fries while Tommy played in the Playland. The bright side? Tommy was happy and remembers that Christmas fondly.
Just last year, Tommy was tired and not remotely interested in any part of the gourmet Thanksgiving dinner my niece had spent 3 days preparing. Consequently, in a mere 3 minutes, I wolfed down that wonderful dinner so I could distract Tommy with a more pleasing activity. While many parents experience something similar, most aren’t still doing it when their kids are teenagers, unless those children have special needs. We’ve learned, however, that sometimes we just have to roll with it. Being flexible and having appropriate expectations are critical to surviving the holidays.
Both sides of our family are large. Tommy and his brother are well loved. Some of the family has shown great interest in understanding autism and try to make gatherings successful and enjoyable. Others are perplexed and uncomfortable when Tommy is loud and screaming for comfort food instead of the specially selected and prepared meal. I used to get nervous and embarrassed about some of his behaviors. I was constantly apologizing for his actions. However, I have learned that Tommy is who he is, which includes being a treasured part of our family. I’ve also learned that it is sometimes necessary for me to remove myself as a buffer in order for family members to know and understand Tommy and his autism. Given the opportunity and guidance, family members will be able to see beyond the “Rain Man” model of autism to the individual before them. They will see the kid who just wants to belong.
Whether your child has autism or another need, give it time. Give your family time. It does get better. Our kids will experience the holidays with boredom, joy and unmet expectations. Hope for the best but prepare for the worst. Be willing to meet family members where they are as they find comfort and process this journey. Holes in walls get fixed. Family relationships are forever.
Kate Sondgerath, Health Information Specialist at Family Voices Indiana, is planning on spending another Thanksgiving with her family, at her Dad’s home in beautiful Traverse City, Michigan. Hopefully, with proper planning, flexibility and adaptability, it will be enjoyable for the entire family.