u/Lauren_Carhart

I have an 8 year old high support needs autistic son who is scheduled to get dental work done under GA for the first time.

I’ve already drafted a list of questions to go over during the pre-op consult with the pediatric anesthesiologist, and the team has extensive experience with neurodivergent patients.

I’m just really nervous of course, and am looking for pieces of advice from other parents/sensory- friendly preparatory tips/ etc

And because he is part me, or rather I am part him.

We do mirror each other’s neurology.

“Home is not where you are born; home is where all your attempts to escape cease.”

- Nahguib Mahfouz

For those of you with profoundly affected children, how did you teach them how to hold their breath underwater? My son is 8 and REALLY likes to swim, but a combination of sensory overload and weak interoceptive skills causes him to inhale/gulp water while doing so.

Even if it seems like he didn’t swallow a lot, a little bit of chlorinated pool water is still enough to cause vomiting and stomach upset (power puking on the drive back home from the pool is just another weird thing that’s been normalized in our family).

Y’all with similar kids, if you were able to teach them how to hold their breath, then what were some of the activities/games/visuals you found success in using? Are there any specific resources for teaching interoception awareness to nonverbal autistic kids that you’d recommend?

I’m an occasional hobbyist, and the only thing keeping me from shooting more often is cost. I’m comfortable investing in good tools if it will save me money in the long-term, but I also want to avoid over-complicating things for myself as a beginner. I primarily shoot color film, but would it be best to start with b&w only until I have a grasp on the process? Should I go with a duo starter kit?

Whichever option I go with, I just want to make absolutely sure that I have all the reusable hardware/changing bag/extra accessories that I will need for a home set-up. I know starter kits come with enough chemicals for the first couple of rolls only, so do I go ahead and purchase them in bulk supply or what did y’all do?

I would love to experiment with darkroom printing eventually, but I plan to just digitize starting out. My local shop charges $8 for scans of developed negatives, so I plan on taking them there. When y’all first started self-developing did you find that it was worth it to purchase a good scanner or did you still opt to get them scanned in a lab? Is there any sacrifice in quality?

I’m pretty confident I’ll have no problem figuring it out once I have a set up, just stressed I’ll forget to order something.

My son has had a government-issued AAC device since the middle of the school year. He’s 8, and his SLP chose this as the method we were going to focus on to get him to start communicating this year as he was showing a little bit more interest in the one she used in her classroom.

He hates all screens, and has never sat through an entire movie or episode of anything before. I don’t think he’s ever paid attention to anything for longer than a few seconds at a time before he runs off, and he usually doesn’t show any interest again after that.

The only things he will watch for a brief moment are children’s songs on YouTube, but he flings the device after a few moments. He’s just not motivated by it at all, but they still insist he’s making progress just very very gradual. He only uses it to request a few favorite food items.

They work with him everyday in speech therapy and all throughout the school day, and we attempt to get him to use it as much as we can at home. I’ll sit with him and try to encourage him to play and explore with it every day, and still there’s just so little if any amount of discernible retention or motivation.

I’ve added all of his favorite activities, items, whatever he takes a liking to I immediately will program it in as a choice.

Is it normal for progress to be this minimal? Lately he seems to be wanting to communicate something that he doesn’t have the tools for, and I can’t figure it out.

I’ve exhausted myself trying and I just don’t know what to do. At 8 years old his communication is still so minimal. His peers all seem to have higher communication skills than him. Or at least verbal reception skills. I just can’t get my son to retain any information whatsoever it seems like, and something has got to give. He just cries and cries and cries and won’t show me what’s wrong or give me anything to go off of at all. Help. Lol

For the families who have children or adult children in homes, tell me about the moment when you realized it was time? Like you were sure it would have to happen and was no longer just a future “last resort” scenario. I hate to say last resort, because as I’ve spent more time in this I’ve realized how it’s not a negative thing but a positive thing. But I’m still very much in the stage where I’m grappling with the intense need and want to keep him with me as long as I possibly can despite the fact that the alternative is most likely the better decision for everyone involved.

But if you’re willing can you guys give me some context about your kids and their autism? Your family dynamic etc? Your reasons? If it felt like you had no choice anymore and why? I’m interested in how your kids have fared and how your lives have changed after the fact so if you want to follow up I’d more than appreciate it. But my main focus right now I think is that moment of grace. Where you realized that you had a decision to make and you could either change your situation or succumb to it and all it entailed. I know it’s a gradual process and decision of course but I feel like there must be a turning point or a moment when you know it’s something that’s going to happen.

My son has been prescribed Clonidine for sleep since he was about 3 years old and it works very well for him. The dosage has never been adjusted since he was that age, and he is 8 now and about 4 times the size he was then. I requested a dose increase because it’s not as affective anymore but she said she couldn’t give one for that medication

She prescribed him Trazodone instead and asked that we wean him off the Clonidine and it was a nightmare. He was power vomiting every morning and sometimes he’d fight the medication until he got to this manic point of delirium and would just be on joker mode all night long it was terrifying.

We immediately switched him back to the clonidine and it gets him to sleep but only for a couple of hours. We’ve even been supplementing with melatonin. Anybody have any suggestions for something else we could try? Obviously he has a solid bedtime routine I’m already doing a whole ass circus routine over here lolll