During the previous visit to see Dr. Bryna Siegel, 30-year autism expert extraordinaire, I broke down in tears.

That was 1.5 years ago, when the kids were almost 3. She told me in no uncertain terms that my son's moderate level autism meant that he, like 90% of kids at his level, would never be independent. I asked if he would ever marry. She firmly said, "No".

From that experience, we came to a couple of conclusions. 1) We will prepare for the worst case scenario while pushing our kids to reach the best potential possible whatever that may be, living day-by-day, and not hoping for a specific end result. 2) The goal would be happiness for the kids on THEIR terms, not ours. Dr. Siegel indicated that even high-functioning people with autism often aren't interested in romantic relationships. Fine.

Dr. Siegel is very smart, but she doesn't pull punches, and the experience, while valuable, was like being hit with a brick.

So, with that in mind, we took the kids for their updated evaluation with Siegel on September 23rd. I brought my aunt, Susan Nathanson. Susan is a former speech pathologist who denied for a long time that the twins had developmental disabilities at all, because when she had worked with people with the diagnosis, it was at the time when only the more severe cases were being diagnosed.

I asked Susan to attend for two reasons: One, with my mother (Susan's sister) passed on, Susan is the closest thing to a maternal figure I have, and I knew I would need her emotional support. Two, although Susan had already come around to accepting the kids' diagnoses by this time, I still felt she (and we) would benefit by having her on hand to listen to the information directly from the expert, and to hear that person's point of view.

So, to summarize, this is what we got out of the meeting: 1) Siegel said that the findings of Santa Teresa Kaiser were - well, she used nicer words, but - crap. She was a 30-year expert and they were novices. In fact, the person who had started the Kaiser program was one of Siegel's students, but she isn't there anymore. Kaiser had updated Nora's diagnosis to Aspergers. Siegel said that Nora had nothing LIKE Aspergers and said it was still PDD-NOS. Kaiser had also said it was still too early to determine if David had any MR accompanying his Autism. Siegel dismissed this as well, saying that David probably had mild retardation. (This was something I'd been preparing for, but still hurt a bit.) She said that at almost 5 years old chronologicaly, the kids' developmental ages are 2-3 years for David and 3-4 years for Nora. Although the teachers had projected that Nora might be able to mainstream in kindergarten with an aide, Siegel thinks that BOTH Nora and David should have 50% special ed, 50% mainstream in K. (This was the hardest news for my wife, who was excited about Nora's mainstreaming, but will do what's right for the kids.)

Siegel once again projected what we might expect David's adult life to look like. (I did probe for this, so its not like she volunteered without me asking.) She said that David could end up living in a group residence with 4-5 others with similar issues, all having a superving staff. She says that anybody coming in and seeing them wouldn't necessarily see the difference between these guys and typical dorm roommates. She said that David will probably never speak in three paragraph sentences and will not likely initiate conversation. Conversation may be like this: Us: So, what'd you do today. David: We went to a ball game. Us: Who won? David: The Giants. Short, terse conversation, but conversation nonetheless.

Afterwards, I had only heard the negatives. I was walking out muttering, "She never says anything good." Both my aunt and my mother-in-law said, "That's not what we heard." They were right. Siegel said lots of good things. She said that both kids had progressed since she last saw them. And the thing that she said that I've been holding onto ever since - "There's no reason for them both not to have full and happy lives." And that's really the main thing we want. Anything else is bonus.

Susan, having previously disliked Dr. Siegel from my description, now has a lot of liking and respect for her. The fact that Siegel was able to calm my daughter down with ease when Nora was going through a hysteria attack helped impress. I think having Susan there was everything that I hoped it would be. Both in support and understanding. And realizing that I was only hearing negatives has made us decide that we ALWAYS have to have a third party when going to the Siegel meetings. The other person who isn't QUITE as close to the situation will be able to see the WHOLE picture, not just the painful parts.

So, all in all, it wasn't a brick to the face this time. Just a small rock.

I'm still struggling though. When they tantrum (like any kid), when they zone out, when they seem to have SO much difficulty moving forward, I'm struggling not to despair.

And yet, they do move forward. Nora in her language, in her socialization. She is making progress.

So is David, often in unexpected and strange ways. He doesn't use a fork. But the other day, he used chopsticks to spear his food and bring it to his mouth. The other day when he misbehaved, my wife was clearly unhappy with him. He suddenly said, "Mommy is mad!" He usually asks for juice by saying "Apple juice, please". When we weren't quick enough in responding, he brought his cup over and said, "Fill up with applie juice!" He wasn't catching a ball I was trying to throw at him, but he'd slap it back toward me while laughing.

There is progress. It is just...so...hard.