In his bubble.

It is often said that autistic people live in their own world - in a bubble. And Danny certainly does at times. Except he is never alone in his bubble, I am always with him.

His world includes me, and he can't conceive of a world without me involved in every detail. I am not just invited, I am expected, even demanded, to be fully present. It is a privilege and often an amazing experience, to be so deeply immersed in a world in which others are seldom invited, but it can also be exhausting. His world is very intense, very noisy, very busy, very demanding.

That was the original caption I included with this photo. But I wanted to tell more. 

I was explaining to a friend what life is like with him lately. It's so conflicting for me - it can be so amazing, but it is also so draining.

There is a concept in infant & child development that I read about back when my babies where babies. The idea is that they are born with no sense of themselves as an individual. They don't understand that they are distinct individuals, separate from other people, and in particular they don't understand that they are separate from their mother. Mother's voice is internalized because it's the voice that sounded like it was coming from inside of them. Mother's heartbeat is the sound they are used to hearing and the rhythm they are used to feeling. Mother's cadence of walking, mother's body temperature. All of these things are inextricably tied to their existence when they are born, because they are the rhythms of the only life they have every known. What's mother's is theirs, and what's theirs is mother's. They gradually learn to make the separation as they grow and experience the world around them. They gradually begin to realize that they and mother are two separate people, and they begin to define who they are as an individual. I don't know if there is a fixed developmental time when this happens, but from my observation it seems to be late infancy or early toddler when they have fully completed this separation of self. I think this is why people know of the "terrible twos" as being so hard - it's that stage of having finally reached independence. It's the stage of "me", "mine", and "I do it myself".  

But there are times when I think that Danny still hasn't fully made that separation. There are times in my day when I realize that his existence is still inextricably linked to mine, that he still very much defines himself by his connection to me. He matches his rhythms to my rhythms, his tone to my tone, his mood to my mood. He expects me to be completely attuned to his needs and completely instep with his train of thought. He gets irritated when I don't follow along with his every thought, when I don't immediately agree with his ideas. Actually, it's more than irritated - it's often rocked to his core. He can't seem to conceive of the idea that I might have different thoughts than he does. He doesn't want me to be happy when he is sad. He doesn't want me to be sad when he is happy. He doesn't want me to sleep when he is awake, or to be awake when he is asleep. 

He expects that we are the same. And anything other would burst his bubble. 

Movie Time

In a big family like ours, getting time to yourself is a rare treat. And I'm not just talking about myself. The kids don't get much alone time either. So occasionally when I can tell that one just really needs a break from the rest of us, I will let them watch a movie by themselves in my bed. It's the little things that make a big difference. 

Movie Time -