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I got to stop getting fooled by my son’s honeymoon phases.
It happens every time. The king go through a honeymoon phase whenever he has something new going on in his life.
He’ll have a honeymoon period when he goes on a new anti-seizure med, and his seizure activity will drastically decrease. Yay!
He’ll have a honeymoon phase when starting a new school or a new school year and will be doing great. Yay!
He’ll have a honeymoon period where his appetite is great, and his behaviors are great. Yay!
What I mean by a honeymoon period Is he goes through a phase where things are starting to look up. And ol’ Autism Daddy gets very excited.
In the last few weeks of December we went through one of those honeymoon phases.
We were getting glowing reports at school about his behavior and his general awareness.
He was having almost no seizures.
He was napping a lot less and seemed to have more energy and more stamina, and he had a great appetite. He just seemed happier and more “there”.
And whenever these things happen whenever my son goes through these honeymoon phases I go and make the mistake and get all happy and giddy.
Wifey enjoys this good phase, but she will stay more even keel.
And then inevitably the honeymoon period ends.
So, over the break he had two really big seizures. These were two that were long enough that we were almost preparing the emergency rectal medications.
He also napped a lot over the break which could have been from additional seizure activity we didn’t see.
And his behaviors got a bit worse, his appetite decreased, and he seemed a bit more anxious, not as happy, not as engaged, not as “there”.
And when this happens when his honeymoon period ends I always take it hard.
(“that’s what she said) 🙂
(“that’s what she said) 🙂
Wifey doesn’t take it as hard, again because she’s more even keel.
And, all in all we all had a really great holiday break. This is nowhere near the worst it’s ever been in any of these categories (seizures, behavior, sleep, appetite)
And the good stretch that we just came out of wasn’t the greatest stretch that he’s ever gone through either.
But I always take it hard
(“that’s what she said) 🙂
(“that’s what she said) 🙂
It’s almost like I am slightly bipolar. I’ll have really high highs when he’s doing great and really low lows when he comes crashing back down to earth.
I get too up and excited during the good times and too low during the inevitable crash.
But this honeymoon phase has been his pattern for years so you think I would’ve learned my lesson by now.
I guess I’m an internal optimist. Whenever he goes through a really good stretch I think we’re turning a corner and maybe heading towards some greener pastures.
And that’s not to say that he hasn’t made any progress. I guess I’m just greedy and I’m always looking to turn a corner quicker then the king is prepared to.
But what I have come to realize, and maybe wifey already realized this subconsciously, is that the King has a baseline.
It seems he has a baseline for his behaviors, a baseline for his seizures, a baseline for his aggression, a baseline for his naps, a baseline for his breath holding, and a baseline for his appetite.
During the honeymoon period he goes above the baseline and improves on all fronts and I get happy. Then he returns to baseline and sometimes goes below baseline and has a bad stretch whether that’s increased seizures, increased aggression at school, whatever and I get really bummed out.
But he always seems to return to his baseline.
And the reason that I’m writing this today is that today is the Kings first day back to school after the winter Christmas break and I’m a bit worried that his honeymoon period at this new school might come crashing down.
He’s always had a pattern of holding it together and doing well in the late part of a year November – December.
And then having a really rough first couple of months of the new year, usually with aggressive behaviors, that sometimes bleed into mid spring.
But I gotta remember not to get so down because he always seems to return to his baseline.
He also has a neurologist appointment this week where we will talk about the return of the big seizures, and they will either want to increase one med, or maybe try a different one, and that will probably affect his sleep & appetite negatively.
But I gotta remember not to get so down because he always seems to return to his baseline.
Maybe if he always just stayed at baseline it would be easier on me. (because it’s always all about me, right? 🙂
If someone waved a magic wand and said this is the way he’s gonna be for the long haul, with this appetite, and this amount of seizures, and these wacky behaviors, I think I’d sign up for it.
But then I would probably come to miss those honeymoon periods, where the king is at peace with himself, and extra happy, and all is right with the world.
I guess I just need to be less bipolar, and more like wifey, more even keel thru the ups, and downs.
That’s all I got. I’m gonna end it here.
Oh wait, I just an after school text from wifey saying that the king’s teacher said
“…he had a great day!
Happy as can be in the pool & great all day.
Lots of smiles.
2 naps.
Seemed happy to be back.”
But I’m not gonna get too excited over this. I’m gonna stay even keel, cuz I’m cool like that… 🙂
THE END!
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AD, you seem like your on the up and up about all the latest treatments, so you've probably already researched this, but is there any chance the breath holding and seizures are related? Have you heard about rebreathing carbon dioxide to treat seizures? Here's a bit of info I found on a .gov site, might be interesting or useful
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152150/
I do the same thing – my friend called it riding the emotional roller coaster. My husband is more like wifey.
I go through the bad weeks at school and the great weeks at home then turns around to bad weeks at home the great weeks at school. I take it in stride, only parent at home, knowing it won't last long and just to ride the wave so to speak.
Our first day back was like that too…apparently lots of giggles, stayed at music class the whole time and played with the instruments. Seemed happy to be there. That said, he had almost no sleep last night, and neither did his mommy. I understand the high peaks and low valleys well. Maybe if this peak lasts a couple weeks, we will try tackling potty training again. 😉