spectrumom

After weeks of severe behaviors, Paul and I have a bit of PTSD. Every outbreak of behavior seems to trigger the feeling of "OMG, here we go again." A couple days of screaming and biting (admittedly hours every day, but still not as bad as the end of December/first several weeks of January) and we were ready to call the doctor about more meds. Today is a little better. Hell, I was in a store a week ago and heard a child scream and broke out in a cold sweat. I almost started running to him. It wasn't my child. I was there alone. We are still in reaction mode, control mode. But still, in relative terms this week is not so bad (although no one who doesn't have a challenging child would see it this way.) But both my husband and I are still on edge. Waiting for the other shoe to drop. Not wanting to do what we did last time, and progress beyond the first levels of autism/bipolar hell before we do something, anything. So when this started two days ago, we immediatel...

As many of my dear readers know, since I can't keep my mouth and fingers quiet about my life, Nathan recently went through a severe behavioral episode. We then made it much worse by changing his meds. Suddenly he was screaming, crying, biting for 16 hours a day. It was a nightmare. And since it had come on the heels of a regression, we weren't sure if it was the meds or was just his behavior worsening even more. Being a realist (or a pessimist) I always laugh when people say "Well, at least it can't get any worse than this." OF COURSE IT CAN! I can name several ways it could get worse. Anyway, after finding my husband crying, yet again, with helplessness in the face of Nathan's overwhelming anger/sadness/despair, I said "enough, we are changing his meds TODAY.' And we changed back to the old med. But we didn't know if it would work. And so I thought, 'What can we still work on? What is most important?' And immediately I thought ...

Nathan continues with cycling into rages and self injury. We are so disappointed, because we had seen improvement with the new medication. Unfortunately, that lasted only 4 days. Now he is not AS bad, but he is not good. I have so much trouble coping with my reaction to him. I have guilt on all fronts. I feel terrible when I'm here. I don't want to come home from work. I'm having to take off work to get things done with the other boys (orthodontists, doctors, etc.) because Paul can't handle all 3 at a doctor's office and there's no one who will watch Nathan right now. I feel so guilty about that. I hate where my life is at right now. I almost feel like I am watching a child with cancer who will never die but never be cured. There seems to be no end to his suffering. His problems touch every part of our lives. Isaac has to hide his toys from him, and he has learned to stay away from him when he's raging. Sam is doing poorly in school, but it is ...

I had the most interesting talk with Sam tonight about what it means to him to have autism. The talk almost made me break down in tears. Let me show you why. At age 3 Sam had no communication, except to pull us to where he wanted us to do something. So if we were pulled to the refrigerator, we had no idea what he wanted out of it. And if we were pulled to the tv, we didn't know which video he wanted. At age 4 he was beginning to use PECS (picture exchange communication system) and sign. He would use a picture or a gesture to simply ask for what he wanted. Pizza, ice cream, Blues Clues. At age 5 he broke his arm, but he didn't have enough language to tell us what had happened or where it hurt. It was several hours before we were able to adequately interpret his body language to understand it was his arm that hurt and get his x-ray. Since then his language has been developing. It has been mostly very concrete--I want to eat this, I want to watch that. He has a great deal...