Looking for a miracle. Still.
Way back in the day, starting when Sam (now 15) was diagnosed, and continuing for about 7 years, we looked for a way to fix our boys.
I know. I've blogged this to death.
But we tried DAN! - vitamins, supplements. Avoided gluten and casein and foods with phenols. I rubbed them with pink cream (B12). I went to gazillions of meetings and spent thousands of dollars.
We did ABA, VB, RDI. Bought Floortime videos. Bought books. Lordy, I still buy books. Too many for any one person to read. Unless I dropped out of the rest of my life.
"Hun, keep the kids alive for the next couple months while I read all these books, mkay?"
Then I turned to conventional medicine. We thought maybe Sam did his pacing and stimming because he was nervous, so we started Prozac. Lordy, turns out that was a mistake. Then stimulants. Okay, that helped some. Pacing and stimming go on, because they serve a purpose - they center him and calm him.
Nathan we started on stimulants too. Because any person who is in constant motion from the chair, across the window sill, over the exercise machine, to the top of the mantle, across the couch to the chair and around again. And I mean constant. I mean, that's hyperactivity, right? But, we never saw a difference. And it became obvious that he couldn't control his aggression to himself and others, our hand was forced to the antipsychotics. When that helped only some, and then it got worse, we stopped the stimulant. Because his problem wasn't just hyperactivity. He couldn't feel his body right unless it was in constant motion. Like weightlessness, but anxiety-ridden. More like some fucked up drug trip where you would do anything to keep from spinning off the earth. Except some of the drugs helped.
But not the stimulants. When we stopped them, no change.
And not guanfacine. Which, sure enough slowed him down, but cut out the movement that kept his mind and body connected. Okay, that really fucked him up.
We've added on to antiepileptics (for the mood stabilization) and now changed to Lithium just in the last 2 months.
I'm over the cure thing. I just want him to feel safe and secure in his body. I want him to be able to settled enough to connect with other people and get his needs met.
Today, I contacted his doc. He's having an hour a day where he just loses it. Bites himself, hits the windows, hits his brothers, screams. Ugly. She thinks it's the lithium giving out too soon, so she's raising his morning dose.
And I caught myself thinking "Maybe this will let him break through. He'll be able to really start communicating. He'll be able to really make strides."
I reigned myself in. It's almost certain that he'll keep making the slow strides he has been making. I'm really looking forward to the AAC consult we have at DuPont Nemours in December, because that will really give us a roadmap to increasing his communication.
But I think we've had it proved over and over that there are no miracles. No cures. No big leaps forward.
There is just slow and steady progress. With occasional regressions to show us how nice slow and steady is.
I know. I've blogged this to death.
But we tried DAN! - vitamins, supplements. Avoided gluten and casein and foods with phenols. I rubbed them with pink cream (B12). I went to gazillions of meetings and spent thousands of dollars.
We did ABA, VB, RDI. Bought Floortime videos. Bought books. Lordy, I still buy books. Too many for any one person to read. Unless I dropped out of the rest of my life.
"Hun, keep the kids alive for the next couple months while I read all these books, mkay?"
Then I turned to conventional medicine. We thought maybe Sam did his pacing and stimming because he was nervous, so we started Prozac. Lordy, turns out that was a mistake. Then stimulants. Okay, that helped some. Pacing and stimming go on, because they serve a purpose - they center him and calm him.
Nathan we started on stimulants too. Because any person who is in constant motion from the chair, across the window sill, over the exercise machine, to the top of the mantle, across the couch to the chair and around again. And I mean constant. I mean, that's hyperactivity, right? But, we never saw a difference. And it became obvious that he couldn't control his aggression to himself and others, our hand was forced to the antipsychotics. When that helped only some, and then it got worse, we stopped the stimulant. Because his problem wasn't just hyperactivity. He couldn't feel his body right unless it was in constant motion. Like weightlessness, but anxiety-ridden. More like some fucked up drug trip where you would do anything to keep from spinning off the earth. Except some of the drugs helped.
But not the stimulants. When we stopped them, no change.
And not guanfacine. Which, sure enough slowed him down, but cut out the movement that kept his mind and body connected. Okay, that really fucked him up.
We've added on to antiepileptics (for the mood stabilization) and now changed to Lithium just in the last 2 months.
I'm over the cure thing. I just want him to feel safe and secure in his body. I want him to be able to settled enough to connect with other people and get his needs met.
Today, I contacted his doc. He's having an hour a day where he just loses it. Bites himself, hits the windows, hits his brothers, screams. Ugly. She thinks it's the lithium giving out too soon, so she's raising his morning dose.
And I caught myself thinking "Maybe this will let him break through. He'll be able to really start communicating. He'll be able to really make strides."
I reigned myself in. It's almost certain that he'll keep making the slow strides he has been making. I'm really looking forward to the AAC consult we have at DuPont Nemours in December, because that will really give us a roadmap to increasing his communication.
But I think we've had it proved over and over that there are no miracles. No cures. No big leaps forward.
There is just slow and steady progress. With occasional regressions to show us how nice slow and steady is.
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