Is Your “Happy Holiday” More Like Autism Rumspringa?

The holiday season is upon us. A time for gratitude, family, and merriment. But for us autism families… well, it can be more like being on Rumspringa … Autism Rumspringa

Amish Rumspringa

If you don’t know what Rumspringa is, it is a time when Amish teens are sent out into the world and allowed to experience the things that are otherwise forbidden to the Amish. They acquire experience and knowledge of the outside world, and then decide if they want to go back to the their Amish church or leave the Amish community for good.

Many people think of Rumspringa as a break from being Amish. But just because you get to briefly be a part of the outside world doesn’t mean that you automatically feel like you’re a part of it. For the Amish, that world outside of their community probably in many ways feels uncomfortable, unwelcoming, and unkind. And I’ll bet they have to explain themselves a lot, and that people don’t really understand what it’s like to be Amish. Rumspringa isn’t like shedding your Amish-ness and going into the world. It’s being thrust into a world you don’t really understand, and still being Amish.

Why do I feel like this during the holidays? If you have a child with autism you might understand.

Now I’m sure many autism families have loving extended family who help with their children and understand their lives, and the holiday season is a pleasure. That’s awesome. For lots of us it isn’t like that, so let me paint a little picture.

Autism Rumspringa

Imagine that your child, who thrives on routine, is completely thrown off during the holidays. The schedule is different. It’s a time of complete sensory overload. In addition to the normal holiday stresses and general chaos, you are also consumed by all things autism. Your child may have a meltdown. Your child may react violently. Or, your child may not notice that it is Christmas at all. Whatever your situation is, your child is probably not able to celebrate in any typical way so you are facing this time with some heartbreak. Then, you have to go off into the world and pretend to me normal. If you are going somewhere to see family, you have to pack your bag of stuff, which is a ridiculous amount of work (think extra clothes, distracting electronics, noise-cancelling headphones, a month’s worth of activities, perhaps a few entire meals).

So, by the time you get to where you are going you are heartbroken and exhausted. But you don’t want to ruin everyone else’s holiday, so you try to act normal. Or drink a lot (because you don’t remember normal). You feel like Uncle Eddie crashing Clark Griswold’s perfect Christmas.

 

 You are probably in a house that has things your kid can destroy or food he isn’t supposed to eat, so you can’t relax (and maybe you can’t even sit down). And then everyone tells you how you need to learn how to relax and calm down. They will also probably tell you that you look tired. (Just ignore this – I PROMISE you that you don’t look anywhere near as tired as you really are, so pat yourself on the back, give them the finger in your head, and move on).

Gifts will be exchanged. Maybe you will watch other kids who are the age of your child get age-appropriate gifts. Your child will either get the same type of gifts that you know she could never use. Or maybe she will get gifts she loves that are appropriate for a 2 year old (either way, more heartbreak). Maybe you see extravagant gifts being given and you feel a twinge because all your money goes to all things autism, or you feel sick because you think of how much therapy and supplements and other treatments that crazy gift could pay for. Maybe you get something nice that you know you can never use because it is too breakable or unsafe to go in your home or on your body. And maybe you’ll remember that you used to be able to wear clothes without stains and jewelry that wouldn’t be ripped off (and maybe, even though you no longer really care about shit like that, you still feel a little sad).

And maybe (because of the wine?) you try to talk about it a little. PLEASE don’t do this. You will either get a bunch of well-meaning platitudes (like “I don’t know HOW you do it” or “I could never do what you do” or “remember, God never gives you more than you can handle”) that make you feel like crap. Or, a bunch of advice (like “your child just needs some discipline” or “if you socialized him more…” or “maybe if you didn’t restrict her diet…”) that make you feel like crap. You might even get a bunch of autism wisdom because they know another autism family or they heard the latest news update. This will make you angry because it is the tip of the iceberg of what you know about autism. But, you know you can’t hijack the rest of the night reciting your autism dissertation…

Bye, Felicia

You will probably have to leave early because your child can no longer handle the event. And you leave knowing that everyone is relieved to see you go, because now they can really relax. You also know they are talking about you – about how sorry they feel for you, or about what you should be doing differently. So you return as you left – heartbroken and exhausted. But you talk about how great it was to see everyone and how nice the holiday was. And you pray that you somehow created a beautiful memory, or at least a small moment of normalcy, for your children.

{Note: If you are a family member of someone with autism, this isn’t meant as a complaint or a criticism, even though it probably sounds like that. It is just a small request to consider how you would feel on the other side of this scenario.}

A Test Of Faith

Of course I want to see my family during the holidays. And of course I want a little taste of the “real” world. But I never really feel like I’m part of that world. And it always feels better to go back to normal, to go back to “my people” where I feel safer and the needs of my children are understood.

Amish Rumspringa is in actuality considered to be a test of faith. I’ll bet that during the holidays that rings true for many autism families.

Following Rumspringa, many Amish kids do long to be a part of western culture and choose not to return to the Amish community. However, more than 80% reject our modern culture and go back. And as an autism mom, I get it. 

Not that Autism Rumspringa has a choice…