It's not easy being 2e. Not for anyone. Not for the 2e kid, his or her family, their extended family and friends, or the general public we come in contact with each day. An eleven year old's weird ways are not cute anymore. It is was much easier to forgive a toddler's disruptive or strange actions. When my son picks his nose and eats it, or stands up repeatedly in the theater, or touches everything in the store, people look at me as if I somehow didn't read the parenting manual. Trust me, I am fully aware of all of his annoying qualities. I understand that his behavior makes you uncomfortable. I know I come across as too lenient sometimes, but I am just picking my battles. I have to walk the fine line of pushing him hard enough to help him grow, but not so hard that he feels like a complete failure. It might not seem like it, but he is highly sensitive to how others feel about him. He wants to be "normal" but his disabilities make it extra hard to conform. If he was physically disabled people wouldn't expect him to just overcome that difficulty; but because he looks "normal" on the outside, people are less apt to cut him some slack. Parents of neurotypical children don't understand that I live every day wondering how much worse things are going to get. The specter of my son as non-functional adult haunts me all the time.
Every day, without giving it another thought, parents with neurotypical kids do things that I would love to be able to do with ease. Like eating in a restaurant, for example. We can't blend in, my son talks too loud, he jumps up and flaps his hands when he is excited, he won't eat most of the food on the menu. I get that he is loud and disruptive. I go to bed many nights with my ears ringing. I would love nothing more than to live in a quiet environment; but he has trouble understanding how loud his voice really projects. He bumps into things and people because he does not know where his body is in relationship to the world around him. I can see how others might think that I am allowing rude behavior and I should be a stricter parent. Maybe they are right. Perhaps if I removed him every time he talked too loud or moved too much, he would stop talking loudly and jumping around. Or maybe he would just stop talking.
Families with 2e kids have a monumental task in helping their kids socialize and make meaningful connections to others. I am so grateful when my son carries on a reciprocal conversation. I am too focused on the fact that he finally asked me something about my day to notice that his volume is turned way up. Or perhaps I am so thrilled he is actually eating something slightly different than his normal rigid diet, that I may not correct him for standing up while he's doing it.
But even when he is quiet and still, he doesn't fit in. I see people staring at him when he does something odd, like pressing his hand into his pizza slice and slowly rotating it in the light to examine the reflective patterns in the oil. Or refusing to eat his grilled cheese sandwich because, despite our desperate instructions to keep it whole, it came cut in half. We really were not being jerks about sending it back and ordering another one served whole. I wish I could somehow help people understand that we are not coddling him, or making him weird, or allowing bad behavior; we are just trying to get through the day with our family in one piece.
The stressors we are dealing with are often not obvious to people who don't live with a 2e kid. I don't know too many people who would lick the toilet seat to try to show their germphobic kid that it is safe to use the toilet. Or experience the frustration of having to choose between crooked teeth or an exhausting physical battle at every visit to the orthodontist. How about trying to figure out how to teach your kid to identify and respond to being hungry, hot, cold, in pain, or tired? Or how to understand and interpret facial expressions and body language? Most parents won't know how it feels to be over the moon because, for the first time in his life, your 10 year old kid spontaneously gave you a hug. Our quiet desperation comes from the relentless need to explicitly teach our children every nuance of life in a "normal" world. Most children will learn what is socially acceptable just from living in the world with other people. Not our kids.
We often feel judged and misunderstood by the world at large. Sometimes we just need a safe harbor, someone we can vent with who won't misunderstand or judge. We are not asking for solutions, just acceptance. We need some places where we can visit without having to apologize or walk on eggs. Families of 2e kids need some respite. 2e kids need acceptance and understanding. It would be wonderful if people stopped putting expectations for "normal" on our kids. They probably aren't meant to walk a normal path anyway. Who knows how their lives will turn out, what they will do in the world, or how they might impact your life? Whatever the future holds, they have the right to be accepted for the unique, wonderful, difficult, weird children that they are.