I spent the day with Nathan. Crying.

I wanted Paul to have a day off. He deserves it. Christmas vacation has been a wormhole leading to hell at our house.

Nathan has cycled into a special corner of hell called 'bipolar phenotype autism.' This is probably a corner he has occupied for a while, but he has made it his own in the last few months in a new and unique way. And now there is a name for it.

Grabbing your brother and biting his back leaving a bruise. Biting your support staff so hard that it leaves tooth marks through 2 layers of clothing. Biting your father hard enough to leave open sores. Biting yourself and leaving bruises from wrist to shoulder.

Yes, this is a new level of hell. Not better than the old level.

Being with his brothers now sets him off in a very horrible way. So we have spent as much of this vacation as possible with them in separate towns. My mom took the other two, and I took Nathan. And Paul took off on his bike to prevent my mom from getting tired of the other two and bringing them back to him.

Nathan and I went only 2 places. To Weaver's where we had a snack and bought cheese. And to Carmen & David's, a lovely ice cream store in Lancaster.

At Weaver's it was busy and crowded. And compared to how he has done recently, he did pretty good. We had to wait in the sandwich line. His new medicine makes him hungry, hungry, hungry. He screamed and bit himself while he waited. I kept him at least 3 feet from anyone around us. I smiled reassuringly at people who glanced at us. The lady at the counter (after taking far too long) said she would bring our food to the table. Smart move.

And then we drove to Carmen and David's. He loves ice cream. He chose ice cream in a bowl with hot fudge. I told him several times that he could not use his hands to eat his ice cream, but he could not be flexible enough to turn his bowl to eat the fudge. He screamed and bit himself. He picked up a handful of ice cream and slammed it onto the table, splattering it. When I moved to interrupt him when he banged his hands on the table my hand was slammed into the table (it was not intentional) and a piece of my thumb was avulsed. Just a little piece. And I couldn't eat any more. I just started crying.

On the way home I asked him if he wanted to go to Joann fabrics or Michael's, but I could tell he was only echoing my final words. So finally I pulled over and used Proloquo to give him the option visually. "Do you want Joann, Michael's, or I don't want to go?" "I don't want to GO!" with that very incredulous tone that tells any parent of a preteen that you are SO DENSE that it is amazing you can breathe.

So many troubles. So many helpful signs.

But where are we going? Will I ever be a person who can pursue my own interests? Will we always be subsumed by Nathan's needs, never to have a chance to make plans separate from him? Will I always have guilt, every time I attend a meeting or do something on my own, that I am sticking Paul with the care of him?

And what about when we are too old? If he is still this high need, still aggressive, this decision will come sooner. I can't look that far down the road yet. It contains more nightmares than I already have.

And it makes me cry more.


  1. I have no idea what to say to this. I can only begin to imagine how hard it is for you to live like this, to see your son hurting so much and not being able to stop it. I just wanted you to know I had read it and to offer you huge huge hugs. Xxxx

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