Monday, December 31, 2012

My Weekend with DS, or Why I Learned to Love Worrying and Stop the Bomb

Every time I watch my aunt's kids, I'm left with a sense of bittersweet disillusionment. On the one hand, it's really great having little cousins that I can help to mentor and support. My own siblings don't have kids yet, but the two decade difference between my cousins and I gives me a little taste of being an uncle-type. It's also eye-opening to see how they are progressing through their middle school years, because it is so much like what I went through and not like what I went through at the same time.

When I have CS, the older of my two cousins down, I'm impressed with the way he is quickly coming into his own as a man. He has some small social deficits, but they are disappearing quickly and were, I think, mostly due to the fact that he went to a charter school and grew up in a neighborhood with very few kids. As  he moves more into the dances/afterschool activities/YMCA intramural scene, he seems to be doing well. Two years ago, when he first became interested in firearms, I was reluctant to support him because he was in that creepy paramilitary phase kids go through. Now, though, I'm happy to take him out t practice his marksmanship. He's conscientious, managing both safety and waste disposal with an eye toward making everyone else's time easier.

DS is another creature entirely. He's obviously on the spectrum--his behavior is what originally prompted me to evaluate my own and, eventually, to seek help. In a lot of ways, this makes it easier to be with him. When we hang out, I don't feel pressured to make conversation or two even make eye contact. He's content to be in the same room and to enjoy my company while we listen to music or quietly watch TV, and he only asks that he be included in the decision making. When we talk, we talk about substantial things that are right in front of us--why did that plot twist just happen, what new game he's playing, etc. Once we've said what we have to say, too, the conversation goes quiet. I don't feel pressured to chatter.

At the same time, being with DS is perhaps the biggest trigger event for my own problems that I could have. He's intellectually and emotionally about three years behind his calendar age, and he has ADHD to complicate his other issues. This means that even when he is doing his best, when he is obeying all the rules and keeping himself entertained to boot, he just creates a sensory nightmare for me. His small fidgets and twitches turn into contortions where he will drape himself across the furniture and slowly turn, twist, rub, and move himself around the room to stim. If I'm trying to do anything more complicated than watching television, this movement and sound begins to distract me, and my concentration erodes.

I can't blame him for what he's doing, either. It's his version of bobbing his leg, tapping a pen against his knee, or twisting his toes (my stims). I can still remember how physically painful it was for me when my father would reach over and hold my leg still until I stopped trying to bob it. I don't want to do that to DS. I can't take it, in the long term, either. By day three, I'm choking myself to swallow my frustrated growls because I don't want to hurt his feelings, but I also can hardly manage to sit in the room with him. By the time he leaves, I feel guilty because I really want him gone, but I also really want to be able to nurture him and to support his growth. I feel like I am uniquely suited to advise him about some of the things he's having the most difficulty with, but at the same time, he's still such an egg at times that I lose my words trying to explain things to him.

My weekends with my cousins are so valuable to me because they fill a part of my life that would remain empty without them, but at the same time, they are proof of my own disabilities. When I'm with CS, I am pleased to see him take charge of his own life and grow into the kind of man I am proud to know, but I am slowly drained by the sustained effort of socializing with an NT teenager. When I'm with DS, I feel more comfortable in my own skin, but I am slowly pushed into a sensory nightmare that makes me irritable, irrational, and short-tempered, and those are three attitudes that provoke his regression into isolation and his meltdowns. Either way you cut it, I can't be with them without being very aware that I would be unfit to support children of my own.

My family sees me with them and tells me what a good parent I would make. They question whether or not my partner and I "really" can't have children, despite Liz being on six tranquilizers that all cause birth defects, immunotherapy (IViG), and blood thinners. They push and push and push (mostly my mom), trying to show me how much I've grown by showing me how much DS and CS look up to me. It hurts me so much to tell them they're wrong, but they just don't see what happens when I retreat into the basement. If two nights with just one cousin at a time is something that I need 48 hours to recover from, I can't imagine what would happen if I had one full time. At the same time, though, I feel this intense desire to rise to the challenge.

I just turned 31 last week. Maybe I'll finally be able to handle it by the time I'm 40, and then Liz and I could talk about fostering or adoption. I hope so, but I fear not.