rubenpants.com - a journey…

It’s been a rough week. My son has been as unhappy as I’ve ever seen him. As a result, María José and myself are as burnt out as we’ve ever been.

Rubén made a habit of spitting out everything that we put in his mouth. This has been going on for couple of weeks. What did make it into the kid’s digestive tract came out a nasty, smelly, wrong-color mess. He finally appears to be recovering from both of these annoyances in the last day or two ­— we think this stuff has been caused by a odd stomach bug that seems to have since infected my spouse.

His disposition has not recovered. We suspect stress on the liver. He’s only on 1/3 dose of the chelator, and we dare not increase it. This child is pissed off roughly 95% of his waking hours, and the remaining 5% is spent watching Dora the Explorer.

My wife and I are on the edge. We spend all day every day with our child, and those around us are too busy with their own lives to offer us any kind of real relief. Lately, I’ve sought respite with friends from my old workplace, and though I relax somewhat and have a good time, the same old problems await me upon my return. Besides, I then feel guilty for leaving my wife to deal with everything in my absence.

Rubén has a particularly frightening new habit. A few posts ago, you heard me rant about a therapist’s assumption that my child couldn’t deal with transition because of his diagnosis, and it wasn’t true. Perhaps it’s time to eat my words. My son is lining things up (pretty much any set of like objects will do). He’s done this before. What hasn’t happened before is his rage if we tamper with his order. He literally cannot stand having an object out of place. This perseveration has me scared shitless. It’s not like the other stims he’s gone through, where the offending action was clearly a sensory issue caused by his toxicity. This is a signal that perhaps there’s something truly out of whack with the way his brain is wired, and it terrifies me.

This week has hearkened back to our time in Spain when we first started to suspect he was on the spectrum, but knew little about what being “on the spectrum,” entailed, save for truly frightening info posted online by a well-meaning but misinformed medical establishment. I would lie in bed at night, unable to sleep, silently and prematurely mourning my baby boy who would be lost to me forever. María José lay next to me, her even breathing the only sound. I knew she was awake, the same stream of fears and what-if scenarios coursing through her sleep-deprived brain. She probably knew I was awake, too. But neither of us said a word, fearing to give voice to our suspicions and somehow make them true.

Others can’t help us. They can’t help because they don’t really care. Well, they care enough to lend a sympathetic ear, to secretly pity us and thank their lucky stars that the evil quicksilver didn’t infect their offspring as it did ours. But to give us a genuine respite takes time and effort, more than they’re prepared to give. Sure, they say, “If there’s anything I can do, blah blah blah…,” but they expect us not to take them up on it.

This current state of events has driven me to spend more time with my son, to push and work even harder to get him back. The problem with this is that I also have a role as the sole breadwinner, and the more time I put into my child, the further behind I fall in my work. Money is tight. Our sanity is tighter. And time is the rarest and most precious commodity of all.

This entry was posted on Tuesday, May 3rd, 2005 at 9:45 pm and is filed under RANT!, Background. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.