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.