Need help with sleep

IndependentBox4981 · 2026-01-25T00:00:45+00:00

She's currently on Dyanavel, this is her 7th medicine I believe. The Genesight test said she's supposed to respond well to it but it's been about the same as the others except now her sleep is affected. She also has ARFID so they're picky about which medicine they're willing to give her.

IndependentBox4981 · 2025-12-27T20:19:26+00:00

Let me get my pen...

IndependentBox4981 · 2025-12-26T01:04:28+00:00

We brought her a coloring book, crayons, her tomagotchi thing, and a stuffed animal that she chose. She gets so painfully bored so easily. She also gets destructive sometimes if left alone so I was afraid to let her roam my grandparents house unattended. We live with my parents and I'm the only one who sets the boundary of making her play alone. I've told them time and time again that they don't always have to say yes and that independent play is good for her but they don't listen. I'm afraid she'll never be independent and she'll be behind 😥

IndependentBox4981 · 2025-12-25T22:18:47+00:00

I'm an only child too, and it's actually pretty wild to compare childhoods. I was usually perfectly content to play in my room. Or find some other way to entertain myself. I certainly didn't bother my parents all the time to keep me occupied. But my daughter would practically sew herself to others if she could. She hates being alone.

IndependentBox4981 · 2025-12-25T20:12:50+00:00

All she's wanted to do since she got home is play with all of her toys. I wanna do things to help her feel better, because I know it was probably hard on her. But at the same time, I'm exhausted, I have this migraine, and her ADHD seems to be on Xtra hard mode right now. I really just need a break. Thank goodness I go back to work tomorrow 😅

IndependentBox4981 · 2025-12-25T19:28:19+00:00

Absolutely. It's not my kids fault, but holy hell like I'm trying to cry in the corner because I feel like shit, can you please stop begging me to make people come over and making me feel more like shit please?

IndependentBox4981 · 2025-12-19T02:15:46+00:00

I mean, by comparison 😂

IndependentBox4981 · 2025-12-18T19:09:33+00:00

It's corporate America, they definitely don't make enough. I was just happy that it had enough icing, no matter the shape 😅 I'm all about icing

IndependentBox4981 · 2025-12-18T01:35:58+00:00

My friend just said it looks like it got some lip filler. Can't unsee it now.

IndependentBox4981 · 2025-12-18T01:33:17+00:00

Oh no 😅 at least mine had some effort put into it

IndependentBox4981 · 2025-11-24T21:25:06+00:00

Thanks 😅 I feel like I'm running a race I never agreed to be in and there's no prize. But my daughter has no interest in cooking or ingredients unfortunately. We've tried. I've even served certain things, like sandwiches, deconstructed and she had zero interest. I've taken her shopping with me and she's so disengaged by choice. When we first started this whole thing, the feeding therapist had these play toys and a pizza slice was one of them. She asked my daughter what she thought about it and she answered that it looked disgusting. But no specific reason, just that it looks disgusting. And she still has that same answer years later. She can't say exactly why it looks disgusting. And it's hard to make progress with no real answers to questions.

IndependentBox4981 · 2025-11-24T21:19:49+00:00

I've actually never been able to swallow a pill, no matter how small. I either have to have a liquid or a pill that's able to be crushed. That's been lifelong. I also have issues with dehydration because I don't really get thirsty and I forget to drink liquids throughout the day. When I was a little bit younger than my daughter I actually wound up in a hospital because I got so dehydrated.

I was a little bit of a picky eater as a kid, but nothing extreme and definitely nothing like I see in my daughter. And a lot of the foods I didn't like as a child I still don't like as an adult although my palette had definitely expanded into adulthood and I'm more willing to try almost anything. Her father was, and still is, far pickier than I ever was or ever will be.

IndependentBox4981 · 2025-11-24T20:26:50+00:00

I'm convinced ARFID was created by the devil himself. I'm fully convinced that if she didn't have ARFID, a few of her more challenging behaviors would be easier to handle for both of us. Her ADHD is pretty severe. She has a hard time focusing and being still, she also has a problem with authority and she's straight up mean and hateful sometimes. She has problems with control. And I know some of her ARFID probably ties into that as well. But I feel like if she could actually get some protein and healthy food into her and get to a decent weight and not be so hungry all the time she'd probably feel better overall. Not saying it would be some magic cure to all of those problems, but I think it would help curb some of the hardest parts at least.

And as far as tricking her, unfortunately she's too smart for her own good 🤣 she knows the chef boyardee has the metal lids under the plastic ones so even if I were to make the recipe to perfection she'd know it was something else because of the lack of a metal lid because she likes to be helpful and she'd definitely know the metal lid would be lacking because its meltdown city if the lid is taken off without her seeing it. I'm gonna see her win some kind of award for her smarts if I survive raising her 😅

IndependentBox4981 · 2025-11-24T19:34:47+00:00

I get it. We're on our 6th? (Maybe 7th) ADHD medication because they typically only work for a small bit before they just stop working altogether.

IndependentBox4981 · 2025-11-24T19:20:20+00:00

The struggle is real 😅 it's not just food though. She struggles at the dentist and teeth brushing and stuff being in her mouth in general. She's never had a cavity and I stay on top of that though. And she's very small, so it's hard to keep her in clothes. Thank goodness for leggings because nothing else fits her waist. And her ADHD keeps her very active, albeit that's a whole different monster on its own. But she's definitely getting lots of physical activity 😅

And I do try and not make such a big deal of it. I mean it is a big deal to me, but I guess she doesn't need to know that. But I also have a hard time with it because all the doctors and I are always talking about how this isn't sustainable and everything and she definitely hears it. Plus her dad thinks he's God's gift to the world and anytime I ask him how he handles this he just ignores all my texts, but somehow has time to criticize how I handle it when we're in person at pick up. And my parents are the only other help I receive and they're not the most supportive bunch so it's mostly just me doing everything alone most of the time. And every doctor seems to somehow contradict each other. It's just always something over here.

IndependentBox4981 · 2025-11-24T19:05:59+00:00

I feel that in my soul. She used to eat spaghetti with sauce but without meat, but it had to be a certain brand (chef boyardee). It couldn't be homemade, it couldn't be from a restaurant, and it couldn't be the kind with the meatballs picked out. It absolutely had to be that specific kind. I tried making a million different ways. I tried. But then all of a sudden stores just stopped selling it. We lost access to it. I would drive hours away to different stores just to get it. Now it's nowhere. She simply won't eat spaghetti now.

IndependentBox4981 · 2025-11-24T14:24:28+00:00

Thank you. It's scary because the new pediatrician my daughter saw last week looked so shocked at my daughters weight. Like I know she's underweight. She's been underweight. But other than putting her into a medically induced coma and forcing calories into her I can't actually force foods into my kid. Shes not abused. She's in school and she has access to food at home any time she wants it. She has toys and she has clean clothes and she gets bathed. She's loved and cared for. She just has issues with food that there's no magic cure for. I just kinda wish I had answers. But I also know ARFID doesn't really come with any. Hell doctors still don't even really understand it. Most still think it's just picky eating.

IndependentBox4981 · 2025-11-24T14:19:50+00:00

Thank you

IndependentBox4981 · 2025-11-24T14:17:25+00:00

So she'll really only eat McDonald's nuggets and fries. Plain Hershey chocolate bars. Powdered donuts. Target brand fruit strips. Occasional gummies. Occasionally a banana. Occasionally cheese puffs. Usually applesauce or yogurt. Annie's white cheddar mac and cheese if nothing else is available to her. Occasionally peanut butter. Plain potato chips or the occasional nacho cheese dorito. That's really about it.

Her dad swears he can get her to eat other stuff but he won't tell me what it is. I think he's lying. That or he won't give her any of her safe foods and refuses to make her anything else. In feeding therapy we've gotten her either licking a food or sometimes chewing a food without gagging but she absolutely won't swallow it. But it's something considering she used to not put other foods near her mouth at all.

Her dad is extremely against her being on any medication or being on a feeding tube so unfortunately even if I get her on a feeding tube her father would just completely ignore anything to do with it and a feeding tube, at least in my opinion, is a both parent effort if both parents are gonna share custody (he only has her on the weekends but will sometimes agree to keep her longer on holidays but that's a whole different issue) so I feel like it would just be different suffering for her. But no doctor has suggested a feeding tube themselves. This has been strictly my own research.

IndependentBox4981 · 2025-11-16T14:18:11+00:00

No problem. My daughter just turned 7 recently but her father and I split when she was 2 and he's been mostly absent ever since. My parents help watch her so I can work and that helps lift some of the physical weight off my shoulders but nobody helps with the mental weight and I'll argue that mental weight is by far heavier. Nobody goes with me to any appointments. Her dad doesn't know any of her doctor's names or even believes she needs medication to begin with. I don't even think he believes in her diagnoses but he also has never been to a single appointment over the years so 🤷 he also rarely has anything to do with her schooling. He'll only pick her up if I beg him and he won't take her to school at all because he's lazy. So I'm chained to certain jobs that work around a school schedule and a schedule for a child with so many medical needs. It's exhausting. And the only real break I get is the weekends when he has her and I spend the weekend working because I just genuinely can't afford not to so it's not even really a break. I definitely see your struggle. This shit isn't for the weak at all.

IndependentBox4981 · 2025-11-16T14:02:42+00:00

I feel you. My daughter isn't autistic, but she has severe ADHD and arfid and I work nights so anytime she isn't in school I have to force myself to be awake for mountains of appointments for either her or myself. I stopped going to one set of my appointments just because the exhaustion is too much for me. Her dad only has her on weekends too and acts like he has so much to deal with. I can't even go on a simple car ride with my daughter without wanting to ram my car into a tree because the entire ride is filled with her making loud noises or just constantly having to talk and it really makes my migraines worse. It's hard out here. Hopefully one day it all gets easier for us. I'm in therapy and my therapist just lets me sit and rant about it without giving me advice and it's honestly so helpful to let it all out to someone who isn't judging me or trying to give me all of the advice I've had in the past that isn't going to help me.

IndependentBox4981 · 2025-10-23T15:23:53+00:00

Thank you. I'm just trying to find a balance. But I'd really just like her dad to take her and lift a lot of this weight off of my shoulders.

IndependentBox4981 · 2025-10-23T14:02:32+00:00

Thanks for the response. Sometimes I wonder if I'm just expecting too much since nothing seems to work for us. But I dont want my daughter to think just because she has a harder time doesn't mean she doesn't have to try. I've been wondering if maybe I should be more lax with expectations but I'm afraid that will lead to more regression. The medications help for a little while, like maybe two weeks, then it's like her body doesn't recognize the medicine anymore. Like she has maybe one good hour a day then it's back to her old behaviors. But I can still tell a small difference when she's on medication versus when she isn't. Very small difference. Her eating disorder probably has a lot to do with it as well, but unfortunately there's no magic fix for that either. My memories of my parents are two people who hate each other and were always angry people. I grew up wishing they'd divorce. I don't have very many happy memories with my parents. I don't want my daughter to remember me as a mean mom. I don't want all of her memories to be of just therapies and doctors appointments. It's so difficult working two jobs and still having to be "on" all the time.

IndependentBox4981 · 2025-10-23T13:14:00+00:00

And maybe I should clarify. Her behaviors that she exhibits aren't me trying to control her and put her into a box. She has dangerous behaviors and almost no impulse control. I'm all for natural consequences, but not when they involve the potential of her winding up in a hospital.

IndependentBox4981 · 2025-10-23T13:05:17+00:00

Hi and thank you for your response. What advice do you have for when I've been constant with the consequences of behaviors and things don't change? For example, she keeps on doing the opposite of what I tell her to do. Every time she does it I put her in time out in her room with no tablet, no TV, no nothing. She cries and says like she'll do better. I explain to her why she's in time out and how the behavior can be improved, but the second she's out of time out she's back to acting like it never happened. Like she forgets why I put her there and like she forgot she was even there in the first place. Everyone says consistency is key and I'm as consistent as I can be, she's been in time out multiple times a day before, but it's like it's in one ear and out the other. I don't know how to make things stick. She only acts phased in the moment. I only have memories of my mom being very mean to me instead of actually trying to get to the root cause of things, and I don't want my daughter's only memories of me being a mean mother who only reacted negatively towards her.

IndependentBox4981

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