To the Loved Ones Who Don’t Get Why We Say No to Your Holiday Party
My 4-year-old son usually behaves himself pretty well, and we’ve brought him places that other families with autistic kids are not always able to go: on planes, to Disneyworld, to the movies, major league ballparks, outdoor concerts and the ballet. Despite his inability to talk, he comes across as an easygoing, happy boy.
And he is, for the most part.
Over the course of our autism journey, my husband, my daughter and I have gotten pretty good at helping our little guy. Like most families with autistic children, we travel with a bag of tricks to break out when he needs them and techniques to use if we see that he is getting uncomfortable or melting down. We usually come across like we know what we’re doing.
That’s great, and it’s nice to be able to do “typical” things as a family. However, it can make it harder to explain to people that we have to turn down an invitation because we don’t think he can handle it. When people don’t see the meltdowns, it is harder for them to understand how difficult they can be to manage. Taking my son out is like performing a magic trick sometimes. It requires a large amount of practice and prep work beforehand, and can feel like just as much of an illusion. If I don’t perform the steps in the right order or in a specific way, the whole thing can come apart.
We have brought him into situations that might be uncomfortable for him. Sometimes we are pleasantly surprised and he has a wonderful time. Sometimes, though, the only thing we can do is leave as quickly and quietly as possible. That’s OK, too. He is learning about the world, the world is learning about him, and even a failed excursion is a lesson for us.
There are also some things we know we still have to avoid: sitting in traffic for too long, traveling too late at night and places that are enclosed and noisy. He has the hardest time in strangers’ homes, especially houses that aren’t childproofed. Then all I can do is guess at what may be a problem, either as a hazard or a temptation, and try to anticipate my son’s every move. It can be exhausting and unsafe.
Sometimes, we’re just not up for that kind of an adventure. During the holidays, there is so much potential for sensory overload that it can be easier to just stay home. He doesn’t understand the excitement and enthusiasm of other kids, and it can be a little too much for him. Sometimes, yes, it is more important that he has his therapy sessions, especially when he’s off from school for more than a day or two. Sometimes parties with strangers in strange places set him off. You might not realize that something as simple as putting up holiday decorations makes your house feel unfamiliar to him.
We have to accept these things every once in awhile because it’s OK that he has limits. It does mean that sometimes we’re going to say no. It’s not that we don’t love you, or that we don’t want to see you. We do want to be there. We feel bad saying no, and it makes us sad to have to miss out on so many special occasions with you. We truly aren’t avoiding you. Unfortunately at times, things are harder than you know, and we have to do the easier thing. We have to do what is best for him.
We will continue to push him out into the world and expose him to new things. He has come so far already, and I have faith things will get easier. Please keep including us in your plans. Even when you know we’ll turn you down. As hard as it is to say no, it’s so nice to be asked and to know we’re included. And who knows, maybe the next time you ask, we’ll be able to say yes.
The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Lead photo source: Thinkstock Images