Seven Years of Autism and the Death of Felix Gaeta

End of January - beginning of February is an unhappy anniversary for our family, as it is the date(s) that both our sons were diagnosed with autism. One of my sons was diagnosed sometime in the last week of January 2002, and the other was diagnosed the first week in February 2002. Once the first one was diagnosed we knew the second one would get the same diagnosis since they are identical twins. They were two years, 3 months old at the time. I remember the first words out of my mouth when we were informed of the first diagnosis were "Will they outgrow it?" Duh.

I don't know why this year is different, but it feels particularly devastating. I am not someone who is prone to crying but I have been on the verge of tears all month. Some of it is the cumulative stress of fighting with various government bureaucracies for rights my kids are entitled to, but were not forthcoming (including a 4-year legal battle with one school district that has left us with a huge debt burden that we probably will never pay off). And some of it is the panic of knowing what was required for them to make progress, and not being able to get it for them. (I am referring to Applied Behavior Analysis - ABA. For more information on ABA go to The Association for Science in Autism Treatment or Autism New Jersey

For the last two years my sons have had everything we feel they need to make progress towards some form of independence. You would think I would be happy, but I seem to be in a glass half-full mood these days. No matter how I look at it, we have a difficult and exhausting life. Our sons are very tall for their age, and very active. They have almost no spoken language, although it's obvious they understand more than they can say (passive language). We have worked diligently to improve their safety skills, so some of our fears are somewhat abated (they haven't disappeared from us in quite some time, nor have they run into the middle of traffic). They are capable of great destruction (not from maliciousness) so someone must be with them at all times, and they have few play skills (we are the only people I know who have to teach their kids how to watch tv).  They head bang (although it is coming under control) and can have wicked tantrums.

My sons' teachers are dedicated, resourceful, and relentless optimists.  They work very hard and everything my sons have learned I attribute to them. When one of my sons said "Hi Mommy," for the first time, several of them burst into tears. I am not the burst into tears type, but I was deeply touched. In the back of my mind, though, I thought, "It's about fucking time."

Having done this for seven years you would think that we would be used to this or at least a little less inclined to fall apart. Our sons have made more progress in the last two years than they did in the prior 5 years. Nevertheless, over time, we have lowered our expectations, and it is painful to accept that they will never live independently and we will have to work very hard to make sure that they have enough skills to live in a group home and have some kind of occupation during the day. When someone asked me what they are studying in school, I said, "getting dressed."

Please don't get me wrong, I love my children. While this post probably sounds like "ME ME ME!" they are the ones who are shortchanged. Their experience of life is confined by autism, and their future is extremely limited. They will never be capable of meaningful conversation, they will never read and write, and they will never live independently. They are the ones who are missing out from a full appreciation of life and its possibilities.

There is a lot of acceptance involved in all this, and sometimes it is easier to deal with than other times. I can do everything I can to help my children succeed, but I don't get to choose when that happens or how fast it happens. All I know is that I want it all and I want it right now, and knowing that's not going to happen is a bitter pill to swallow.

So what does this have to do with Felix Gaeta? Well, I just saw episode 4 in season 4.5 this evening and I went into it 100% certain that Felix would get offed, and of course he did, and the events leading up to it were almost painful to watch. The whole sequence of events fills me with profound sadness. And in fact I was in tears watching the scene with Baltar and the execution at the end. It was just so well-written and well-played, it felt completely faithful to the characters.

In fact, I have been anxious and even depressed since the beginning of this season because I knew BAD THINGS were going to happen to Felix. As anyone who has read my post on Felix, I feel very attached to this character. When he lost his leg after being shot by Anders, I was especially disturbed, to a large degree because he was now disabled, and disability (whether physical or developmental) just sucks in every way possible. 

And I KNOW it is just a television show and Felix is NOT a real person.

It's obvious to me that I am projecting onto Felix my own anxieties about my children. In psychoanalytic terms, this is called transference. Basically it is just easier to worry about a fictional character than it is to worry about your own children. One is imaginary and his pain is not real (although it is portrayed with great verisimilitude). Our pain is very real, and it just ebbs and flows over time. 

The scene between Baltar and Felix was utterly heartbreaking. I was hoping that by 4.5 Felix would find some happiness, and again, I was treating that as a metaphor (illogical and unreliable) for our life. Instead Felix is in constant pain from his leg, and in psychological pain because of his distrust of the cylons. In the webisodes, he is taunted by the Eight for clinging to "Hope," and left with a great burden of guilt, even though his actions were well-intended and he was lied to about the outcome. By the time he gets off the raptor his hope is gone.

Well, I know something about guilt, too, parents can never do enough for their kids (at least it feels that way) and that is doubly so for parents of children with autism. I love my children but I do feel a lot of resentment at how their disability has changed our life for the worst.

At his execution Felix looks almost serene, and when he says "It stopped" I assumed he was referring to the pain in his leg and probably psychological pain as well. So it gave me some hope that he would find peace in death. 

The metaphor of death as the end of psychological pain resonates very strongly in our house. My husband and I take turns getting REALLY depressed, and it is usually accompanied by one of us saying, "I wish I was dead." That doesn't mean that we want to commit suicide, or that we want to BE dead. It means we just wish we didn't feel that way, that we could shut off our feelings. Unfortunately, WE are not machines and there is no off/on switch.

R.E.M. has a great song, "Everybody Hurts." These are my favorite lines:

When the day is long and the night, the night is yours alone,

When you're sure you've had enough of this life, well hang on.

Don't let yourself go, everybody cries and everybody hurts sometimes.

Who am I?

I am in late middle age and I have 3 kids and a husband. I have a full-time job in New York City, and it takes about 35 minutes by train for me to travel from my home to Penn Station. I have been writing most of my blog on the train, which means that I cart around two laptops (home and work) during the 30-minute walk part of my commute. I am in a state of total exhaustion all the time, which means that you, dear reader, should be very appreciative of all that I do to bestow upon you my profound (and witty) insights about Battlestar Galactica.

It's sad, really, that I am spending what little free time I have exorcising my obsession with a television show that appears on the SciFi Channel. I could, after all, be writing about the effect of existentialist philosophy on late 20th century American literature, but there you go. This is my blog and I get to say what I want.

My daughter is in fifth grade and she is very very smart. She also likes Battlestar Galactica. (She does, however, hide under a pillow and say "yuck" during anything that remotely resembles a sexual encounter, even if it is just a kiss. Alas, I fear that this will come to an end in about 2-3 years). I think, though, that her all-time favorite shows are Dr. Who and Zoe 101. Go figure.

My sons are almost two years younger (they are twins, in case you can't figure that out). They are identical, meaning that they are essentially genetic clones (13th Cylon model, maybe?). They both have autism, and I do not mean they talk all the time about, say, the Civil War, until the person listening just wants to kill them. You know, geeky guys with long hair and really bad taste in clothes, the really smart kids who attend MIT or Cal Tech and go out on their first date when they are 45 (if at all).

They have the really-messed-up-brain autism. They can't talk and can't read or write, although we have made huge progress in getting them to dress themselves and eat at the table using spoons and forks. We are also working to teach them how to watch tv (bet you never heard that one). Their favorite activities are running around screaming while rubbing a piece of string (and then sometimes eating the string), or running around banging two items together. Lately this has been two spoons, although in the past it has been any two objects that come to hand (including two crystal candlesticks which, of course, shattered). When they are upset they tend to bang their heads on any hard surface they can find, including windows, walls, floors, me, etc. They will do this in the house and outside, which tends to upset people if we are, say, in a diner, at Home Deport, or in the grocery store.

I do not believe that autism is cased by vaccines, and if YOU think so, please keep your thoughts to yourself. I also do not believe that (a) God gives special kids to special people, (b) before they are born, babies pick their parents and our kids chose us because they knew we would be such great parents, (c) God gives us disabled children so that we can be better people, (d) God gives people horrible situations as punishment for being bad, or (e) autism happens because parents (especially moms) withhold love from their children (THE most popular theory, btw, until sometime in the late '70's). 

I believe that we have had incredibly bad luck and it just happened. I try not to take it personally. I believe that all children are entitled to unconditional love from their parents, although there are many times when I don't like my children that much. My kids are incredibly good-looking, btw, and that certainly makes it easier to love them (which may not be admirable on my part, but is the truth). They are also very sweet and very affectionate.

I think I am suffering from something I call "The Purple Rose of Cairo" syndrome. In case you don't remember, "The Purple Rose of Cairo" is a Woody Allen movie set in the Great Depression, and the main character is a woman whose life is so shitty that she watches the same film over and over again as a means of escape. I am also not a huge science fiction fan, although I loved the original Star Trek series (I was like 8 at the time) and "The Next Generation." "Deep Space Nine" was pretty good until the last year or so, when I got lost in all the geopolitical machinations. "Voyager" was often, but not always interesting, and I never saw the prequel series. I like all the even-numbered Star Trek films. I don't read science fiction at all, but I like speculative movies and fiction a lot.

In this blog I will be devoting some posts about individual characters. I will also be providing a show-by-show analysis of my observations on the plot, themes, and characters. I will not be provding a synopsis of each show, if you want that go to Battlestar Galactica on the SciFi channel web site. There will be spoilers, so if you haven't seen the entire series you may want to stop right here.

I have not listened to all the podcasts, and I am going to hold off listening to the rest of them since I don't want to be unduly influenced by their content (it feels a little like cheating).

(I also really like parentheses, in case you couldn't tell.)

Enough about me, let us join Battlestar Galactica's quest for Earth.