Living in two worlds

I went to visit my family this weekend for Easter. My whole family still lives in about a half hour radius on Long Island. The longer I am away from Long Island the stranger I feel when I go there. It is like a different world, the uber-suburbs if you will. A place where you are only as good as the name on your clothes and handbag, your accomplishments noted in the number and size of electronics or other consumer goods, and you will be judged on how nice your house looks. I'm not saying every single person on Long Island thinks this way, but it is kind of the culture of the area. I don't mean to offend anyone, and if you are offended I hope you at least have that $500 Coach bag to make you feel better. Seriously though, although I can usually find those things in the DC suburbs too, it seems so pervasive back on the Island.

But as much as it can be disconcerting to visit your hometown and realize you no longer fit in there, it is worse when you visit your family and feel like you no longer fit in with them. I love my family and I miss them. I try to get up to see them every few months and occasionally they come down to visit me. But we are of two different worlds. This has become more apparent to me in dealing with Q as I try to navigate between with NT world and the world of autism. (NT stands for neurotypical, for someone who has a typical or "normal" neurological development vs. those on the autism spectrum.) In the NT world all sorts of things are expected from you. Socializing, normal speech patterns, the ability to deal with multiple intense sensory input, a pattern of thought that flows in a way that the world around you can understand. The NT world assumes that anyone can handle this. For Q, and anyone else on the autism spectrum, this is often not the case.

On a good day Q is fairly interactive. He wants to have a conversation with you. Be advised that this conversation will probably in some way involve Dora the Explorer (because what would life be without the map to tell us where to go), will probably include nonsense words that you will not understand, and will end either because Q will decide you'd be fun to climb and jump on or because he will find something much more important to focus on. Going in it is helpful to know this and not expect much more. It helps if you either play along with his nonsense words or know something about children's television. Do not expect Q to have an understandable conversation with you that has a beginning, middle and an end. Do not expect him to be able to have this conversation without moving his body around. Do not expect that he can have this conversation while there is ton of sensory information for him to sort through. Do not expect answers to abstract questions like "what is your favorite....?". Make sure you know that at least half of what he says is pulled directly from a television script or book (usually word for word). (This is where knowledge of children's tv comes in handy!)

So when Q walks into a room with my very NT family, two worlds collide. It's like a bad train wreck. Without fail someone usually questions my parenting, though in that way that I can almost be convinced that they're really on me side and want to help me. Though everyone knows Q they still expect much more than he can give them. And Q is usually not interested in cooperating.

But here is what I have learned in the past year: This is the way Q has conversations. This is Q. We can help him as much as we can to have the speech he needs and to stop doing things like reversing pronouns. We can give him work on fine motor skills and sensory input to help him carry out tasks and regulate his system. We can give him pictures to help him organize his thoughts and help him feel in control of his surroundings. But as important as those things are, it is equally important to just love and accept him for who he is. To not ask so much of him that he cannot succeed. To not expect him to be functional when a room is crowded and noisy and overwhelming. To not say "Q, stop jumping" because he NEEDS to jump to help keep himself comfortable in his own skin.

And my family, though they love Q dearly, and they occasionally try to remember to take these things into consideration, just does not get that Q is not NT and will never be NT no matter what you do to him. To try to make him NT is like trying to make a fish breathe air. They aren't made that way. And so I spend my time trying to negotiate between the NT world and Q's world. I try to educate those who don't understand. I try to make Q understand what he needs to know to function in the NT world and I try to make the NTs understand why what they ask is so difficult for him. It is frustrating because neither side understands and both sides get frustrated and everyone looks to me to fix it. In the end my NT family cannot help but think that if I was stricter or more "something" (I have no idea what this is but I hear it a lot.), maybe it would be easier or Q would be more NT. And Q would just as soon give up on the whole project of interacting when he's had a really bad day.

No one has laid out this course and explained how to do this. I feel like a guide dog most days. Only I don't get to wear something that says "please don't pet me, I am working". Now if only they had that in a designer label then I could really go home and fit in. Problem is that I no longer fit in the NT world but I also don't fit in the autism community. So I wander around pulling everyone along with me making sure they don't get hit by a car. Seriously, I need more treats. And I know that that is not bacon.