A few days after my kids had recovered from the chicken pox Son erupted into the worst meltdown I’d ever seen. He was violent, trying to throw anything he could get his hands on. I had to physically drag him to my room, then stand over him to make sure he didn’t try to throw/break anything in there. He tried to hit and kick me. He – for the first time ever – told me he hated me and that he wanted me out of his life. He was totally out of control. All this because of some minor incident; he’d gone from zero to raging in a matter of seconds. As much as I’ve had to deal with outbursts from my kids, I’d never seen him like this. Over the next few days it happened several times, almost daily. That week I took him to the library for our regular weekly social time with our homeschool group and we had to leave early because he was being so rude – everybody was a “nerd”, everything was “dumb” and I couldn’t leave fast enough for him.
When Husband left the next morning for his weekly 3-day trip to the mainland it was all I could do not to beg him to stay. Usually I relish the time to take things slowly and have the house to myself, but this time I dreaded being left alone with the kids. Later that day a friend called, the one from whose children we got the chicken pox, and before I could say anything she told me that she had almost had a breakdown last week, almost begged her husband not to go to work, because her youngest was being such a handful. She said it was all his normal 5-year old annoying behaviours, but as if someone had amplified them 1000-fold. I listened in fascination and then told her of my recent experiences. We were two weeks behind her kids in terms of the progress of the illness, and she told me that just lately things seem to have gotten back to normal. I held my breath, tried to get through these rages of Son’s as best I could, and kept my fingers crossed that they would not last beyond the two weeks my friend had experienced.
It was during this time that most of my reading and research on Asperger’s Syndrome had taken place. Feeling like I didn’t want to venture out anymore, feeling that my Son’s issues were almost more than I could deal with, the situation seemed critical and I was eager to read about anything that could help us. I was feeling desperate, to be honest. However, I’m pleased to say that after almost daily meltdowns Son seems to have gotten past this “post-pox psychosis” (as I wryly call it). There’s been only one dramatic meltdown in the last 5 days since we hit the “two weeks post-pox” mark.
After living through those two weeks his usual behaviours seem mild in comparison. Of course, we’ve also been mostly staying at home and lying low, so I suppose the real test will be when we start venturing out to our usual activities. But already I’m feeling like things aren’t as bad as they seemed during those two weeks. It has started me thinking about this whole Asperger’s thing, and exactly what I want to do with the information and how far I want to take it.
Some people have suggested that Son is still young, and while his behaviours may be extreme for a child his age, he likely will outgrow them as he matures. He does seem to be immature when it comes to certain things, and they say Aspie kids are generally around 2/3 their “real” age in terms of maturity. It has been suggested to me that “high needs/intense” boys often get much better around the age of 8 or so, when they start to settle down. Certainly I’ve met a few older boys who are on the spectrum (or likely are; not being treated though) and they seem to have a much better handle on their behaviours. They are mature enough to understand that such things make life hard for others and them. They are motivated to make changes. They are better able to verbalize what’s going on for them, and that makes it easier for their involved parents to support them in exactly the way they need.
On the other hand are those who say that this is the trap we fall into, thinking that time is all we need. That if we just manage the situations as we do, eventually the child will outgrow the need even if it takes a lot longer than most other kids do. I’m always around my kids, always there to support them. But what if I’m just micromanaging the situations rather than actually improving them? What happens when they are teenagers, wanting to go and hang out with their friends, and I’m not there to prevent Son hurting someone or Daughter having a meltdown? There is a strong urging in the ASD community to get children the help they need as early as possible. Waiting until they are teenagers is not considered an ideal approach. Sometimes I have to ask myself – has the situation really improved or am I just expert at managing it now? We used to leave the playground when a large group of kids arrived. We still do. I still have to shadow Son closely when he’s around small children. The fact that problems don’t arise very often may be more a testament to my prevention and management skills than to the situation having improved to any significant degree. At this point it’s getting hard for me to be objective about our progress.
We went to the doctor last week for our referral to a pediatrician. We will then ask that person for a referral to a psychiatrist or someone who can actually do a diagnosis. Beyond that I’m still not clear on what happens, but it will be lots of waiting to get to that third step. Meanwhile, I’m trying to sort through all the information I’ve been given, and consider the different points of view I’m hearing. I think right now it would be accurate to say that I’m trying to figure out how important this (potential) diagnosis will be for us, what role it will play. Will we go out in the world as the family of Asperger’s kids? Or will we quietly file away this information for our own use? One thing I’m afraid of is losing sight of my kids as just “normal people with quirky personalities” and instead seeing everything about them as some symptom of a syndrome. It’s easy to fall into that, so I am finding. And I’m trying to remind myself every day that they are who they are. They are not a syndrome anymore than being Hispanic is a syndrome. But such information can certainly help explain, for example, why you don’t understand a word that person is saying (turns out he’s speaking Spanish).
It’s as if I’ve been riding a pendulum, swinging first headlong into the world of Asperger’s, then swinging back to a world where they are just kids with their own unique issues. Somewhere in-between I hope the pendulum will stop swinging and settle down to specific reference point from which we will venture forward.