A Much Harder Place

“We just booked a trip to France!” people-mother-family-father

“Here I am with my bestie, looking out over the San Francisco Bay.”

“Nothing better than drinks with girlfriends in Porto, Portugal!”

Facebook is killing me.

For years now I have looked at people’s photos, at their family outings, travel adventures, even just fun times at home. And I have envied all of it. Not because I believe that every minute of their lives must be happy and perfect, based on the pictures they post. I know that no one’s life is perfect, whatever that means, no matter what it looks like on the outside. You can’t ever know what goes on between two partnered people, and you can’t ever know what it is really like to be in someone else’s family.

I spend a lot of time wishing people knew what it was like to be in my family. It is challenging, to put it mildly. I have two, maybe three nice pictures of the four of us. When we attempt to do typical American family things, it doesn’t usually work out. Someone will always be miserable and ruin it for everyone else. And who wants to take a picture of that? It isn’t possible to explain my family life properly, and any attempt to do so would probably sound whiny and ungrateful. Claudia and her first-world problems. But I am exhausted.

It used to be that my envy also came from a certain financial unease; we couldn’t do some of the things we saw our peers doing, because we simply didn’t have the money. Now the money is a bit less of an issue, though we still need to be careful (I am unemployed).  These days my envy comes from a much harder place. It cannot be fixed by earning more money, establishing financial security.

When I see families plan or go on trips with their young kids or even their adult kids, I know that will never be us. I think how great it would be, when my kids are young adults, to go abroad with them and sit in a bar or cafe somewhere we’ve never been, toasting the joy of discovery and togetherness. But it isn’t going to happen. When you have a child on the autism spectrum, your life can be seriously curtailed. I am sure this isn’t true for everyone, but it is true for us. My son’s diet is so limited, so inflexible, we really could never visit a foreign country. Certain places would be easier than others, of course. If there’s plain pasta, or white rice, or french fries. If not, he won’t eat.  When he is older, he will expand his repertoire somewhat, I’m sure. I can already see hints that his Bread and Jam for Frances lifestyle is wearing. But other things may never change.

My beautiful boy is fascinated by the great wide world and visits all of it regularly on Google Earth. He digs into people’s customs and holidays and traditions with great pleasure. He learns their languages and practices writing some very complicated characters. He watches opening and closing ceremonies of the Olympic Games (almost all are available online) to see the athletes from around the world and to hear whatever tidbits the commentators share about the people and the countries they’re from. He shares newfound information with us and sometimes gets frustrated that we can’t bank all those facts the way he can. He is terrified to board a plane or a boat, and sometimes still gets quite carsick. It has to do with his vestibular system, the body’s sensory system that contributes to spatial orientation and a sense of balance. Sometimes when I try to imagine him on an airplane, I can only picture that disgusting puke scene from The Exorcist. exorcist

Speaking of barf, it’s not just his diet that is resistant to change. Taken out of his safe spaces, without the items he uses daily, he is thrown off and unable to enjoy himself. Last summer we foolishly planned a long road trip, never thinking about how difficult it would be for him to “play it by ear,” to not know where and when the next meal would be and what it would consist of.  On all journeys, staying in the hotel room to watch TV and order (Papa John’s) pizza or going to the hotel’s pool are his favorite things. He is a creature of habit or even ritual. He engages in the same activities day after day, and does them in the same way, at the same time. And he likes it that way; he has no desire to do things differently. Most people, including medical professionals, will tell us that he needs to learn to get out of his comfort zone, and I agree, but only to a certain extent. I push him to do things independently. The smallest things present big challenges. Last night he argued for ten minutes that he would not be able to adjust the water temperature for his shower to his liking. He was positive he wasn’t capable. But he made a loaf of bread all by himself last week. It was delicious.

I also want him to learn the social skills that will allow him to be happy in a neurotypical world. And we push that, too, even though it’s painful, even though “normal” children say terrible things to him or are judgmental or stay away because they think he’s weird.  Taking him out of the spaces where he feels good—good about himself and comfortable—does not seem anything but cruel. It has taken nearly twelve years of raising this child to understand this. And that cruelty extends to the rest of the family, because when my son is unhappy, so is everyone else. There’s no way around it. The older he gets, the more difficult it becomes to deal with these moments. He’s a sweet and sensitive kid, so he cries, but he also shouts profanities at us, threatens suicide, destroys his own belongings and often things that belong to us, damages the house in some way, slams doors, tries to hurt himself, and gives us the finger. He also threatens to become a Republican or a Christian, and he likens his parents to Hitler and Trump, because he knows how insulted we’ll be.

This is terribly unfair to my daughter, who would love to travel, and would have a wonderful time seeing new places, trying new foods, and flying. I feel guilt about denying her things because of her brother, but how do we plan a family trip that excludes one of our kids? The answer is that we don’t. In recent years, my spouse and I have managed two international trips without the kids–both because they were work trips for him. We can’t afford to pay all that for both of us, and we certainly couldn’t afford to bring the kids. And if I didn’t have a sister-in-law within reasonable proximity who was willing to take them, I wouldn’t be going anywhere. I imagine my daughter’s first trip out of the country will happen when she’s in college–I hope she will want to study abroad. And then maybe she’ll make a birthright trip to Israel.

I have wondered before about posting things on social media, and if it is reasonable to think that people should take care not to brag. Who am I to say what anyone should post? I hate negative posts, too–we all have one “friend” whose life seems to be a complete misery, whose every ill, mishap, and misfortune is right there for us to read. I know people who like to post photos of grotesque injuries–not a bruise or a scrape, but swollen, suppurating things that belong nowhere but a medical text. Stitches, bits ripped off. I have blocked such people from my wall.

Years ago, an orthodox rabbi explained some rules of modesty to me in a way that at the time I considered ridiculous. He said a good reason not to hold hands with or (God forbid) kiss your partner in public is that you don’t know how very lonely that might make someone else feel, a passing stranger who is longing for a similar relationship. Now I see that differently. I don’t believe we can expect that people won’t hold hands out of sensitivity to the possible lonely-hearts around them; but it might not hurt, before we post our excitement on Facebook, to consider ways to share it that will hurt just a little less those who don’t have anything to counter it. Because some of us are running out of BandAids.

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