Akila had two good days, she was pleasant to talk to on the phone both times yesterday. Today the director of the crisis home called and said the Psychiatrist thought we should put her back on the risperidone, on top of the topomax that was recently introduced. We decided to hold off awhile first, to see if doubling the topomax which we started on Monday evening helps.
Then tonight, she had a bad night. Just when you think something might be helping. On the phone around 5:30 or 6 pm, she was yucky. The around 8 pm I got a message that they had to restrain her. She was upset about something, started hitting, kicking and biting. Then she went after the staff with a butter knife (other ones are locked up of course). That's the Akila I know and love. I say that jokingly, but seriously also. I don't really expect her to stop with the extreme aggressiveness. I would like to be wrong, I would be fine with that.
Last night, while Dorothy, Julie and I were hanging out, we were talking about the two types of kids on the Fetal Alcohol Spectrum. We know that there are several diagnoses on the spectrum, FAS, ARND, pFAS, ARBD and others (I think that tons of kids with LD-Learning Disabilities and ADHD are on the spectrum also, if they were prenatally exposed to alcohol). But regardless of what their diagnosis is on the spectrum, there seems to be two types, maybe more, but two main type of kids- or adults for that matter. Not sure what to label the two types. Could be "Excessively Aggressive" and "Non-aggressive"; could be "Manageable" and "Unmanageable"; could be "Violent" and "Non-violent". There were a few other names we had for them, but they are only the type of names you can share among close girlfriends, if you know what you mean. We all need to let lose and vent after all.
It also seems, that the ones in the tougher category, the "Violent" category, more often have a higher IQ, whether they are FAS or ARND. This would be consistent with research that has shown that kids with ARND and higher IQ's, often struggle in life more. I was talking with another friend today of a ARND kid who has a lower IQ than Akila and struggles more with learning. She also struggles with behavioral issues, no doubt about it. But there is also more hope, and a sense that she will be able to have an "easier" future. Well, easy is the wrong work, but hopefully you know what I mean.
Right now, Akila is still a tiny little thing. She weighs about 90 lbs, and we are still able to restrain her (although I do have some good back pain that is aggravated very time). Watching her violence, her anger progress as she gets older, is pretty scary, and profoundly sad. It is so sad to see her full of anger, over the smallest of things. Today, she is mad because the school sent home the stupid fundraiser junk.
I should say, the really STUPID, rotten horrible fundraiser junk. I hate these things, even for my neuro-typical kids. I refuse to do them. I hate the way they pump the kids up for the limo ride, and all that crap. It is especially hard for families with more than 2 kids. But every time they send this CRAP home, it causes problems with Akila. She was mad and yelling on the phone. I told her to go ahead and sell some. Well she didn't know who to sell it to. I said EXACTLY!! I refuse to bother all my friends, family and neighbors with buying trail mix at twice or three times the price as it is at Target.
Anyway, I digress. She was mad, angry, and I am assuming this is what caused her rage. She has raged at home over wanting a certain type of cereal that we are out of. And before she gets to the point of raging, she often is consumed with anger for up to two hours, or even more. Last week during one of her rages, they documented that for 1 hour 45 minutes, she was angry about something, before they finally had to restrain her, which they call a hold. In the past 4 or 5 months, she seems to be angry 50% of the time, and that may be even less than it is.
It is sad. I think about how I feel physically and emotionally when I am angry, and it is horrible. To feel like that all the time, and to seemingly have very little control over it, that is sad. I might have to talk with the Psychiatrist about that next week- the constant angry state is what is making things really tough.
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Impulsive Aggression is the terrm I found to describe this attribute in our kids. I don't want to seem like a pollyanna but ....
It was a normal day for us to have our daughters rage - complete disconnect - not just for an hour or two but for several at a time, during school breaks the screaming, hitting etc... could last from 7:30am until 5pm when Dad got home, then restart in the evening.... sigh I hate remembering those days, the pollyanna bit? Each year the aggression and violence decreased, each year as the girls began to mature some and found other ways to communicate their anger, we had shorter durations and gradually we went from all day everyday, to a few times a day, to a couple times a week to once or twice a month to now. The girls are still full of that anger, but are finding better control, its not completely gone and when life is hard and not going their way, we still get the wobblers. Its been a little over 10 years now, we still have a ways to go.
Our girls have a low IQ, just enough to qualify them as DCD for services, but at the age of 17 they comprehend at roughly the age of a 10 year old. The kids like ours that are on the fringe, where the disability is invisible, they are caught in a place where they just don't fit in with anyone. We do believe the girls act out in fear, frustration, sadness and anger, We have had to completely change how we react, respond, take in this anger. We know its not about us, the words the violence etc. have nothing to do with us, somedays I do better at remembering this, other days I'm right in their screaming with them.
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