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Thursday, April 27, 2017

Rough Patch

Lots to unpack here.  Where to start...

Lily, always a good sleeper, if somewhat more of an early bird than daddy might like, is not a good sleeper anymore.

She goes through these little...streaks or trends or phases, so in the past, when she hasn't been sleeping I sort of chalk it up to a phase, or maybe she's coming down with something.  But at this point...it's been since daylight savings time last October ...I think I'm ready to say, "she's not a good sleeper".
It could be worse of course.  Autism/ADHD and no sleep seem to go hand in hand a lot, and I've certainly had a nice long run of "in bed at 8 and up at 6".  Now we're at "in bed at 9 and up at 3".  That's painful for a guy who can't get to sleep much earlier than 11 on the best of days and usually gets to bed around midnight only to wake up at 5:30 to start my work day.

So to go to bed at 11...or midnight...then wake up at three for the day is...draining.  I wrote a little about what it does to me when I'm sleep deprived >>here<<, but in a nutshell...the patience I need..NEED to deal with some of Lily's challenging behaviors is not in abundance.  Or Emma, honestly.  I snapped at her yesterday for something that I ordinarily would have just laughed about.

So that's the first thing.  I need to find a "solution" to this problem.  I use a monitor in Lily's room.  That way I can tell when she wakes up and get her on the potty. 

I could turn off the monitor.  Except she has been getting out of bed and coming down the hall, or even the stairs lately.  And she is not the best at stairs.  Especially if she's wearing slippery socks on the hard wood steps.

I could install a gate at the top of the stairs.  That might be okay.  I could turn off the monitor without worrying about Lily taking a spill down the stairs.

I could see if there's a sleep aid Lily could take to keep her asleep.  Getting her to sleep is no big deal...KEEPING her asleep is what I need.  Would dosing her with melatonin when she wakes up help?  Maybe.  Not sure.  But melatonin has been pretty ineffective with her in the past.

I could do nothing and hope this...6 month phase passes.

I don't know.
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Help at home.  I got approval from my insurance company for a home health aide for Lily.  She started a week ago.  I was approved at the end of January, but it's taken this long to find a resource.  Now that she's started, it relieves a lot of the burden from grandparents having to drive 40 minutes one way to watch her until I can get home from work.  This is an amazing benefit, and I'm slowly getting comfortable with it.  Right now it still seems very new and I'm still stressed out about it, but hopefully I'll mellow out with time.

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Lily is growing up.  I won't go into the personals, but she's growing up and I have a plan, and that's basically all I guess anyone needs to know.  Not that anyone NEEDS to know it, but if you were like...what the hell is Jim going to do when Lily goes through puberty...Jim has a plan.

If you don't have a plan, feel free to reach out to me.  I like my plan.  People that need to know stuff know stuff.  And they know what to do.  And I know what to do.  And if you don't know what to do...you should figure that shit out sooner rather than later.

Was any/all of that cryptic enough?  Anyway, if you have a little girl like Lily, and you're considering your options, I'd be happy to discuss it with you "off blog".

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It bothers me that I'm never sure if my little dashed lines are all the same length.

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Lily had a couple seizures at school the day before yesterday.  We've long suspected seizure-like activity with Lily, but up until Tuesday nobody had ever really witnessed them who had a lot of experience.  The school called me and they sent her to Children's hospital ER in a "princess carriage".  I drove to meet her there.

We learned nothing.  Lily had previously done a sleep-deprived EEG that was inconclusive, and we elected not to do a 24 hour EEG followed by an ambulatory EEG because, to be honest, the first one was so fucking traumatizing that I didn't want to put her through it.  That was...years ago.  >>HERE<<.

In fact...5 and a half years ago.  So I'm doing it again.  I got a script for an MRI and one for an EEG and I'll be doing it this time without Leslie's support, but Lily is in a LOT better place for this kind of thing now.  She'll still have to be sedated for the MRI, which isn't my favorite, but there's is absolutely no way she'll sit still to have her brain scanned for a half hour.

So the "good" thing is someone saw it, and we checked it out and she seemed fine.  And the other "good thing" is that now I can use the scripts to get a better look so that IF something is there...I can get her help for it.
this Lil patient is being so patient

I was at the ER from 1:00-7:00 on Tuesday to get those two prescriptions and that medical buy-in that she was "fine".  And Lily was somewhat stir-crazy, but she was good all things considered (having not really eaten since breakfast, they wouldn't let her eat until she had bloodwork done I think that finished up around 5.  So...that was a bit painful constantly telling her "just a little bit longer".

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Recap:  Lily isn't sleeping much, and is becoming a woman.  In addition, she seems to have had a couple seizures at school.  I need help, but got some for after school if I can just figure out a way to get more sleep.  Doc says there could be a link between her seizure and her coming of age, and that could be scary, but I'm following up.

There!
Unpacked.  For now.

7 comments:

  1. Hi Jim. Had the exact same issues peak with Leila at the same exact age... just when I thought sleep issues were behind up they returned with a vengeance... for like 2 months straight I was a zombie... I seriously thought I would die from lack of sleep. As much as I was anti-pharma, Leila was finally prescribed trazodone for sleep and it has been a godsend. ( She is also on clonidone but that doesnt do anything for her sleep) I also have a monitor but I have it on a motion detector setting so it only comes on if there is movement. I have door chimes on her door to so it will wake me if she opens the door. They are only about 5 bucks. GE makes them. I hear puberty tends to worsen the sleep situation and can trigger more seizures in seizure prone kids. Meanwhile is she on any waiver waiting lists? Can you asks your caseworker about a diversion slot?

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  2. You sound like a pretty amazing Dad. Im in Australia and my 5 yo son was doing the early morning thing, starting the day at 1am sometimes. Getting to sleep has never been the issue just staying asleep. He is now on Risperdal / risperidone and it has changed our life! Good luck to you. X

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  3. I have nothing valuable to offer other than kind words about how "you've got this"!

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  4. Love to hear more about your plans. I have a ASD daughter still young 9 but trying to figure things out

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  5. My 9 y/o Autistic daughter didn't sleep for the first 4 or 5 years of life. I didn't think I would survive. Now she sleeps on a full size 6 foot trampoline and we have 3 android phones that we keep fully charged. When Keira wakes up she goes for her phone. Then jumps a little on the trampoline. Then back to the phone until she goes back to sleep. I don't know how a child how suffers from severe mixed receptive expressive language disorder can't put a sentence together, but can search youtube for her favorite videos, but she does. I still wake up, but I don't have to get up which has helped a bit.
    You mention Lil doesn't walk well, so the trampoline is out, but Android phones are around $20 at Walmart (that's what we get) and you can put Baby sitter apps on Androids so they can only do some much damage. We use Kids Place. If you set it up right they can't get out of it, it comes on when booted, takes a password to get out of it and has a volume control!
    I know people look down on us for letting our kids have so much screen time, but we can't take care of them if we don't survive them.
    I'll probably contact you via facebook messaging for your 'growing up plan' cause I have nothing.
    eDee

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  6. I have no advice at all. You know your kids best, as I know my own. I just wanted to thank you for writing. I have 4 children, and 3 of them are on varying degrees of the spectrum, my youngest, almost 5 being on the moderate to severe scale. There are so many blogs and forums out there, and I follow a fair share of them, but this one feels familiar and comfortable. commiserating with you. For the past 3 years I my youngest has only slept about 3-4 hrs at a stretch and it's nice to read something that doesn't make me think that I'm doing it wrong, or well intended but unsolicited advice. I just wanted to read something to relate to and help me stay awake tbh. Looking forward to future posts about your family and of course wishing health and happiness to you and your beautiful girls.

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  7. We are going through the same thing with my son - seizures brought on by puberty. Ugh. I hope your EEG and MRI go smoothly!

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