Check in with the liaison then off to the blood draw in another building. Then back we go to the behavior sciences building for the EKG and blood pressure check. Then its time to meet with the lead Doctor of the study. He asked many questions, all with TsukiMoon in the room. It made us uncomfortable.
He was particularly interested in our son's behavior (of course). We don't like to tell people about TsukiMoon's bad behavior in front of him because it is important to always stay positive in front of him. Normally we would say things like; he is improving, he is challenged by but working on ______, and the like. To talk about tantrums in his pressence was tough. Especially becasue we had many incidents of what we call "circular-thinking." TsukiMoon has a tendancy to have ridged thinking. He acts like a dog-with-a-bone. He won't let go even when you ask him to give it a break because his parents can't take anymore. I have begged him to let go of something because I can't take any more.
He was particularly interested in our son's behavior (of course). We don't like to tell people about TsukiMoon's bad behavior in front of him because it is important to always stay positive in front of him. Normally we would say things like; he is improving, he is challenged by but working on ______, and the like. To talk about tantrums in his pressence was tough. Especially becasue we had many incidents of what we call "circular-thinking." TsukiMoon has a tendancy to have ridged thinking. He acts like a dog-with-a-bone. He won't let go even when you ask him to give it a break because his parents can't take anymore. I have begged him to let go of something because I can't take any more.
Over all the first week on the drug sucked, which makes us think we got a placebo. In a moment of break-down I said to my husband that getting a kid with ASD is a raw deal. Mr. TsukiMoon who is always positive, was also broken down. To my surprise he said, "yes it is." At which point we started making jokes, because gallows humor is sometimes the thing left to help out.
"How did you become an alcoholic?" I said, as if asked by someone else.
"How did you become an alcoholic?" I said, as if asked by someone else.
"Well we have a kid with ASD," I answered my question. Mr. TsukiMoon chuckled.
I followed it up with "how did you gain 50 pounds?" Again as if asked by a someone else.
"Well, I became best friends with the folks at the cake bakery." Which brought a guffaw from my husband.
That was on Friday. This weekend Mr. TsukiMoon kept saying he was tired. Now it might still be a residual from shingles he got 4 weeks ago, but I told him that it might be depression-- that a change in energy level is a symptom. He is on a plane to India as a write this, earning the money needed to cover all of TsukiMoon's therapies.
If this medicine helps it would be nice to take some of the pressure off families. Sometimes it can all get to be a little much.
That was on Friday. This weekend Mr. TsukiMoon kept saying he was tired. Now it might still be a residual from shingles he got 4 weeks ago, but I told him that it might be depression-- that a change in energy level is a symptom. He is on a plane to India as a write this, earning the money needed to cover all of TsukiMoon's therapies.
If this medicine helps it would be nice to take some of the pressure off families. Sometimes it can all get to be a little much.
At the end of the session with the lead doctor we were then asked to double the doseage in both the morning and evening. Maybe this will have a better effect. Maybe this week will be better then the last.
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