Holidays can be a challenging time with a special needs child. I know that from experience. My wife and I have two boys, Peter and Daniel, aged seventeen and fifteen. Dan is autistic and non-verbal. Years ago, my wife and I made an unthinkable family decision. We would no longer go from home to home trying to see everyone for the holidays. What is often meant to be a fun and relaxing tradition with relatives turned into a super stressful, very disruptive planning nightmare. A holiday party for us meant that one of us (mainly my wife) would be in a separate “quiet room” comforting or hanging out with Dan while everyone else was enjoying the festivities. For the weeks coming up to the holidays, we would have discussions, checklists, plans, backup plans and worry all the way to the party. My wife and I are social creatures. We love to go to parties, have friends over. and host events. We were torn and conflicted. She would be sad, and I would be furious that things were not as they “should be.”
So, we did the unthinkable. We opted out. That sounds selfish (and characteristically anti-social). It was not. We were trying to save our sanity. We decided that we were going to stay at home and have Dan in his most comfortable environment instead of going to another’s home. This decision would give all of us less stress. As for the family, we decided that if we were not going to go to their home, we would instead to have a “Holiday Open House” and invite everyone to come to our home. We called them and said something like, “If you can make it, great. If not, no biggie. No pressure.” When we did this, something amazing happened. Everyone came to us. As I look back in the last 10+ years of my life, I’ve found that I have often worried too much about how having a special needs child affects others, especially family.
I have consistently underestimated the amount of support available.
This year will be our tenth year of hosting the holidays. I am so fortunate to have a loving and understanding family that are willing participants in our reduced stress strategy. They support us, love Dan immeasurably and don’t judge our methods. What was a pressure-reducing family decision years ago, is now our family tradition. At our party, Dan often hangs in his room, comes down periodically to see who is here and check on the festivities. And, as the years have gone on, he has gotten more into it, coming down more frequently, and perhaps unexpectedly sitting directly “on” someone on the couch or wedging himself in-between a couple to hang out. The difference today is that when he has had enough, he goes to his room for some quiet or to be more in control.
During the party, family filter in and out of his room to see him, play with him, or just to get some one-on-one Dan time.
Some of the great things that my wife does to make this a fun day include a (heated) trivia contest, a “guessing jar” of candy where the attendees guess the number of pieces, and the craziest “White Elephant” exchange in history. All contests have small fun gifts. And, I am always as surprised as others to see what they are. As for me, I make it my goal to provide a huge holiday meal and channel my inner chef.
Admittedly, this strategy doesn’t solve for our other holiday challenges like, does Dan want to come down and open presents Christmas morning? Will he eat Christmas dinner? Will he take a photo for the Christmas card? Or, Dan’s strong desire to have the Christmas tree lit always.
Each of those is probably another article and a life lesson for me.
In looking back, what this decision has done for us was to remind us to be grateful for each victory and be thankful for the support that we do have. At times, it is easy to get overwhelmed and think that I must solve every issue of my child’s life or to focus on what we don’t have, compared to others. This experience and many others have taught me that when I let go of how things “should be” and realize that I don’t have to do it alone, the possibility of something better always presents itself. Funny enough, what was once a very stressful decision for my wife and I has ended up being one of the greatest Christmas gifts I ever received, a change in perspective.
My hope for the readers of this article is that if you have a special needs child or there is one in your family this season, that this year you receive the same gift that I did, a change in perspective.
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Photo credit: Getty Images
