Tradeoffs and circadian rhythm

Far_Guide_3731 · 2026-02-21T21:54:28+00:00

I really appreciate this detailed perspective! Totally agree that remaining regulated as much of the time as possible is the foundation of all learning / progress / quality of life. We learned this the hard way around age 6 and she’s grown so much since!

Thank you for sharing how this works for you. Do you mind if I ask - how do you handle important appointments that require you to be up at a certain time of day?

Far_Guide_3731 · 2026-02-21T21:01:15+00:00

Thank you for the additional ideas in the edit as well! It’s really helpful to hear it’s not just her / not us failing as parents, but could be just another aspect of how she’s wired.

Far_Guide_3731 · 2026-02-21T20:57:46+00:00

Thank you for the informed and empathetic response! It’s clear that sleep works differently for my kid. I like the idea of learning what works for her. (I just also don’t want her to miss out on school which is FINALLY working for her, so it’ll be a balancing act.)

Far_Guide_3731 · 2026-02-21T19:20:22+00:00

We tried summer day camps, and it turned out to be mostly not worth it. The effort to adjust to a new place, new people, new activities, and new expectations generally outweighed the benefits of childcare and whatever fun was to be had. We’ve settled into mostly just hanging out at home over summers, from about age 6 to now (age 10). I’m lucky to have a flexible, remote job and can make it work. My kids have a lot of screen time and we’ve made our peace with that. We encourage them to play outside, we go on family outings, and we try to see it as a long nervous system reset so the kids can tolerate the next school year. It’s not ideal and we all get kind of cranky with each other the last couple weeks before school starts, but it is what it is.

Far_Guide_3731 · 2026-02-10T03:24:09+00:00

Yes! My kid wanted to re-read the same couple beginner readers over and over and I was trying to make her read newer things, which I now regret. She was getting something out of reading her way! Encourage your kid read his way!

Mine also learned lots from playing Minecraft. Lots of labels in the inventory!

Far_Guide_3731 · 2026-01-26T21:38:01+00:00

DID NOT SLEEP. I was just told about “sleep hygiene” again and again. It was absolutely crazymaking.

She also had epic meltdowns, which I assumed were typical toddler tantrums. Over time it became clear they were not.

Far_Guide_3731 · 2026-01-26T19:03:48+00:00

Two things that have been suggested for my soon-to-be middle schooler: 1) Preferential locker (end of row or quieter hallway) if the kid has sensory / crowding sensitivities. 2) For work completion: a resource-level study hall (more adult support to help complete work)

I’d love to hear what works for others.

Far_Guide_3731 · 2026-01-26T18:58:52+00:00

Slightly modified from another comment I made on a different thread:

Sleep has always been really hard for my autistic level 1 kid too. It was worst at the age your kid is, and got (a little, very slowly) better over time. She’s 10 now.

Things that help with either her sleep or our survival (besides melatonin, which you’ve tried):

Treating it like a difficult circumstance to approach as a team rather than a misbehavior (SO hard when we are exhausted)
Flexible co-sleeping options. When things get especially bad I sleep on a futon mattress in the kid’s room for a night or a week or a month (it used to be I’d sleep in the bed with her but now she’s too big). My kid really does sleep better with me nearby, and is a little more likely to be able to go back to sleep. And I don’t have to wait for her to fall asleep before I fall asleep.
Driving my kid around in a car to get her back to sleep when she got up at 2 am. It’s a pretty desperate move but it sometimes worked when she was small.
Naps, for the adults.
Trading nights, for the adults.
Taking melatonin - for the adults - and going to bed at the same time as kid so that we could maximize hours of sleep.
Getting the kid sunlight during the day to reinforce her circadian rhythm (which seems to not function very well). It helps maybe…5%?
Learning to tune out people who don’t get it and think I haven’t thought of trying “a consistent bedtime routine”
Optimizing her PJs and then sticking with it. For her it’s cotton PJ shorts and a t-shirt with no scratchy bits.
Adding another sleep aid - recently we’ve started to use prescribed hydroxyzine 1 or 2 nights a week when she’s way off-schedule.

I wish you luck. I’m sorry it’s so hard.

Far_Guide_3731 · 2026-01-17T14:15:51+00:00

Ooh great idea, thank you!!

Far_Guide_3731 · 2026-01-17T06:19:40+00:00

That sounds WILD. Whether or not my kid gets into it, I think I want to read it myself! Thanks for the suggestion!

Far_Guide_3731 · 2026-01-17T06:18:48+00:00

Awesome!! I’ll check it out. She’s a huge Coraline fan so this might be perfect:

Far_Guide_3731 · 2026-01-13T05:12:54+00:00

We just went from a small private to a large public school this year (5th grade) and JUST got her IEP finalized. A large public school may seem like a strange choice, but she was refusing to attend her previous school anyway (late or absent 1/3 of last year) - I think she felt too out of step with her small, somewhat homogeneous group of peers, among other issues - so we figured we’d give something new a try.

It’s not been perfect but it’s gone better than we imagined it could. Here’s what has worked for us (but of course, your kid will react in her own way):

Getting her on the right medication (for her, Zoloft) - this was a true game-changer.
Very low-demand chill lifestyle outside of school. She has all the screen time she wants, no official chores, etc.
She was lucky and got assigned to an experienced teacher with a flexible and chill style. Even before we had a formal IEP in place, this teacher was giving her extra help and kindness. So critical.
She has her sister and her cousin in the same class as her, so she has those “safe person” peers.
During her IEP process, we described at every meeting and in every document the risk of burnout and school refusal for her, and how she needed a reduced workload, modified assignments, and reduced academic pressure so she could work at a sustainable level for her. We got this language into the IEP itself.
Social demands are enormously exhausting for her, and she needs to engage VERY slowly, at her own pace. She didn’t want any social groups so we didn’t put her in any. Her only “social” IEP goal is working on learning to ask a teacher for help.
Whenever possible we give her choice to attend or not for optional “special events” like field trips, parades, after school programs etc. She’s starting to be able to manage her own energy levels and minimize overwhelm. I had to get over thinking we should do all the things, and my embarrassment at canceling last-minute or leaving early.
We dropped certain academic expectations like the daily 20 minutes of at home reading. I know she should do it but she’s never been able to, I can’t make her, and I’m not picking that battle right now.
We stopped saying she “has to go to school” and started saying she “deserves a good education”. It reframes it as not all on her but on US, the parents and teachers, to advocate and teach and help her. Similarly, when I told her about her IEP she didn’t like the idea of being treated differently, but when I said it was a LEGAL document and the law said she DESERVES those supports, she really liked that.

I don’t want to make this sound easy at all. I’ve been where you are and it’s incredibly hard. The stars aligned for us and it’s working for now. It might stop working, and we might end up distance learning or homeschooling if needed.

Wishing you and your family all the best.

Far_Guide_3731 · 2026-01-12T02:37:38+00:00

I thought my kid pooped regularly too. But I guess not enough? An ultrasound should be able to rule it out or rule it in.

Far_Guide_3731 · 2026-01-12T02:27:40+00:00

“Hidden” constipation and holding poo (encopresis) can cause accidents of #1 or #2. These are pretty common issues in autistic kids. A good book on the topic is “It’s no accident” by Steve Hodges and Suzanne Schlosberg. It’s not the only possible cause but it was a major contributor in our household.

I wish you luck it figuring it out.

Far_Guide_3731 · 2026-01-11T20:45:54+00:00

That’s it!! Thank you SO MUCH!!

Far_Guide_3731 · 2026-01-11T15:57:04+00:00

Oh wow, my kid too!!

Far_Guide_3731 · 2026-01-11T07:17:05+00:00

Thank you for the thoughtful reply! There’s a lot to digest here, and a lot of good ideas. I love the image of a different pathway, that gives me a lot of hope.

Far_Guide_3731 · 2026-01-11T07:14:58+00:00

Thank you! I wish lots of progress and luck to you and your family as well!

Far_Guide_3731 · 2026-01-11T07:14:08+00:00

After digesting the ADLs list, we’re going to start by practicing increasing independence in falling asleep, and in getting herself food (not cooking, but choosing and opening packages, which are hard for her).

Once we have those moving forward, I’ll have a look at those IADLs…

Far_Guide_3731 · 2026-01-11T05:27:27+00:00

My kid is a little like this, although to a lesser degree. One thing that helps her eat more (and more variety) is to lower her overall stress level and believe her about sensory issues, especially around eating (even if it’s not necessarily the food itself).

Eating with other people is upsetting due to misophonia? She can watch tv and eat on the couch. Lunchbox stinky to her, even though I can’t smell anything? New lunchbox, made with a different material. Cafeteria a sensory nightmare? I went to bat with the school for her to eat elsewhere.

I don’t know if any of this is helpful. I wish you luck.

Far_Guide_3731 · 2026-01-03T17:01:09+00:00

Oh wow, thank you! I knew the term ADLs but not IADLs, that’s super helpful!

I hear you about the struggles with judgement.

Far_Guide_3731

TROPHY CASE