spectrumom

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 getti...

I see these pictures of people attending lavish galas with celebrities. Champagne flowing. Wonderful foods. At least pictures of these things. And I wonder, who are these people? They must not be parents. Because parents of kids with autism are at home with their kids. Most of ones I know don't have people to help watch them while they galavant. They spend most of their money to buy them things they hope will help them. Saving up $400 for an iPad to help their nonverbal child communicate is a huge extravagance to many of the parents I know. Buying a fancy dress or suit and jetting off to NYC is not on their radar. So I wonder who ARE those people in those pictures with the celebrities? Are they researchers? Most of the scientists I know are not in the wage bracket that can buy a $500/plate ticket. They aren't very comfortable in suits. So who is buying those plates? And dresses? And who has the time to be there? They aren't teachers of these kids. I'm snick...

All my adult life have wanted Christmas to be "perfect.". To meet some kind of ideal. Everyone would be happy. I would get gifts that I loved and would show me that people in my life loved me and wanted me to be happy. I hated Christmas. After Sam, my first son, was diagnosed with autism, Christmas developed an even deadlier aura. It became the time that I could make my sons normal. If I bought the right toy, had the right traditions, and went to the right holiday events they would be fixed. I spent a lot of money on that one. Eventually I lost that delusion. Over the years I have managed to lose most of that. But not all. People outside my children continue to disappoint me with their total lack of thoughtfulness. Mostly family. Why I persist in expecting more out of people than they have ever shown any capacity for is my problem. Why a thoughtless gift or disinclination to help us out bothers me after decades of the same makes me wonder about myself. But Christmas has rema...