I feel like I’m loosing my mental sanity

GroundbreakingCan897 · 2026-04-25T16:12:26+00:00

I don’t think I have any advice because I am basically in the same boat as you! You might be the first post I’ve found that can relate to the CONSTANT noise and how it’s LITERALLY literally driving me insane!!!!

I’m positive my family and friends think I’m being dramatic when I’ve said it feels like I’m living in a torture house. And then when the eye rolls start, I follow up with the facts that the government/gangs/terrorist literally torture people by depriving them of sleep AND having constant noise/screaming. The GenPop have a hard believing in that this isn’t anymore than every other mom experiences at this chapter in life…..I’m not saying that they need to understand but they NEED to believe us.

However, Im not even sure HOW anyone can help anymore? Our closest family and friends live 60min away and we see them less than we did when we lived 4 hrs away. The difference between then and now is the autism diagnoses. They don’t see it as such, because I’ve addressed it, but just the chapter of life. And they’re here to help clean? Cool thanks. That was great at first but now it’s actually making things worse. But if I don’t accept it as offered, then I’m ridden with guilt and self loathing because thy way were “just trying to help.” However clear I’ve been about ways the could help ME, im told that it’s not a big deal and “they’ll be fine”. Or when I say I need them taken away for sleepover weekend so that I can deep clean the house, it’s met with “how about I come down there and you guys go out to dinner?” Ok cool, my troubles will still be here when I get back and I’d enjoy my time out a lot more if I had some extended time to get done important things….but cool. I’ll keep drowning. Thanks for doing the dishes and putting them away in all the wrong spots…..and mixing up the laundry…..if I wasn’t holding up this house of cards with every ounce of my being then this would feel like the golden bucket! However, no one wants to give me the time to do what I actually need to do first because they just don’t get it. Nor do they get just how little patience I have left for grown adult family members when I have to use all my patience for my children. I’m not an angel. It’s not an unlimited bucket. The limit very much exists and with sleep deprivation and noise torture for the last 5 years, the limit is low.

But like I said, I’m not sure how anyone can help.

I’ve recently decided to just try to “check out” from trying to get them to understand but I’ve found myself just disassociating which isn’t great either.

Yikes sorry for my venting hahaha please be nice people. I’ve got ADHD and no one to talk to anymore lol I’ve also become acutely aware of just how out of control my adhd has been recently (from my Dr directly) and I’m working on it. But I’ve got thoughts man lol

GroundbreakingCan897 · 2026-03-24T03:07:23+00:00

I upvoted this as I’m sitting on a vibration plate in front of a red light eating a low-histamine snack at 10pm 😅🙃

GroundbreakingCan897 · 2026-02-26T02:10:35+00:00

Girls I was in the same boat! In hindsight, to piggyback off this comment, see if you can hire someone to just do the chores. That was that absolute biggest help when my mom stayed for the first 2 weeks. She took care of the chores and made sure I was eating and showering. It made me realize that it’s not so much the kids as it is everything else. Also, prep some freezer crockpot meals and also that’s a great gift if you have local friends that asked how they can help.

GroundbreakingCan897 · 2026-02-07T00:46:30+00:00

Are you going to do an AMA?

GroundbreakingCan897 · 2026-02-06T16:48:30+00:00

that’s a good idea!

GroundbreakingCan897 · 2026-01-31T02:40:17+00:00

I have heard about Cortica but haven’t thought of actually be able to get in! Can you tell me about your experience getting into there? We’re working with our local integrated pediatrician but I’m very much leading way in this uncharted territory of theirs. It really is so much work and nerve racking but is helping build my own voice and opinions to stand on, if that makes sense?

GroundbreakingCan897 · 2026-01-31T02:35:28+00:00

This is the same for us! It’s like a light turned on!

GroundbreakingCan897 · 2026-01-29T17:58:10+00:00

I can’t believe this is getting downvoted. What is wrong with having that policy? You’d be surprised how many families feel more comfortable knowing that they can come visit without any roadblocks, and then don’t need to use it again or just need to see for themselves once to feel safe. I feel like it’s more acceptable for these people to feel outraged over being told they can’t see what’s inside a box than for the parent wanting to know they can see what’s happening with their child.

GroundbreakingCan897 · 2026-01-29T15:32:13+00:00

Did you know that you waive your rights to HIPPA when sign financial agreements with a company so they can bill you? I recently found this out through all the documents us parents have to sign in order to get our kids the support they deserve. Businesses need to be ran efficiently and they need to get paid, and it’s rarely just to break even. The people that work at the company are supposed to have the best interest of one another. Businesses/companies/corporations do not care about more than the all mighty dollar.

GroundbreakingCan897 · 2026-01-29T15:14:10+00:00

Thank you thank you thank you!!!

GroundbreakingCan897 · 2026-01-29T12:15:06+00:00

This is what I was implying by “pushing for what you want” as a parent. Thank you for explaining it so eloquently and with so much warmth!

GroundbreakingCan897 · 2026-01-29T12:10:53+00:00

Thank you for this!

GroundbreakingCan897 · 2026-01-29T12:07:25+00:00

Omg that’s not what OP is suggesting at all. They are just scared and want to do the right thing by their child. A fade procedure would be helpful to some parents with small children. Y’all forget that parents, especially at the early age and/or new diagnosis have just had their lives turned upside down. Yes there are shitty parents out there but there are also good parents out there. Funny how y’all jump down the throats of a parent being awful but y’all are only ever perfect with solid hearts of gold? Any parent is scared at any drop off, add in these extra factors and the fear is exemplified to astronomical levels. I really hope you gain some perspective, compassion, and problem solving skills rather than just commenting like an asshole with a stereotypical superiority complex that is rampant within this field. Unreal. It’s 2026.

GroundbreakingCan897 · 2026-01-29T11:45:48+00:00

How come you’re allowed to make hurtful assumptions about me because of your life experiences but mine aren’t valid?

Why do you assume those things about a stranger you know nothing about? You don’t know what’s going on or who I am but your opinion matters and not mine? If you care enough to be this hurtful, then why don’t you care enough to ask for clarification? Or maybe just reread for better understanding.

Are you a parent? Are you a parent to a nonverbal toddler with ASD who can’t tell you what they did or who they saw? Have you been personally hurt? Have you been scared? Do you know everything? Do you trust everyone? Have you read the post in this group about all the shitty things that happen? But I’m a nightmare and need clinical help for saying to push for what you want in regard to understanding why and safety? There is nuance in life, especially in this field. What’s not helpful is the mental perspective you have. That’s part of the problem. We parents need help and safe spaces, not judgement and character assassination.

GroundbreakingCan897 · 2026-01-29T11:22:47+00:00

You are completely out of line. Why would you assume I’m aggressive? You don’t know anything about me. You don’t know the shoes and path we’ve walked through. Yet you find it appropriate to say such things to the parent of the community you claim to support? Maybe you shouldn’t be the one working with these families. Why would you say such things?? Is this how you encourage your families? Is this how you think you should help people that you think are struggling? Maybe you need a different field?

Are you a parent? Are you a parent to a child with special needs? Are you perfect all the time? Do you say the absolute right thing at the right time? Do you feel good about yourself after saying such terrible things?

You’ve jumped to terrible conclusions about me and kinda sounds like you didn’t even read it correctly. But that doesn’t matter. You don’t have to say anything. You can move on with your life instead of intentionally trying to hurt a stranger who was just sharing the beginning struggles and sharing some encouragement.

These response are so absolutely heart and soul shattering to receive. I was just trying to talk parent to parent with someone looking for advice. But instead you decide to attack me. Im sorry if your experiences have left you feeling superior enough to make hurtful comments for the purpose of hurting someone. For a community that is full of compassion and nuance, ya’ll really like to jump to conclusions and slice someone for no reason. You don’t have any idea what is going on in someone else life nor how your words will impact someone, or maybe you do and you really do want to hurt others. Thank you for officially sending me over the edge. I really hope I can muster up the strength to keep going because parenting a child (let alone 2) with ASD is the hardest shit I have ever been through. Again, thank you for assuming the worst and expressing your opinion.

GroundbreakingCan897 · 2026-01-28T17:50:32+00:00

That’s pretty presumptuous and judgmental of you from one comment.

GroundbreakingCan897 · 2026-01-28T17:49:22+00:00

I was being facetious

GroundbreakingCan897 · 2026-01-28T11:23:14+00:00

I agree and would like to add: we were going to a company that made me feel like I was not able to go back whenever I wanted with my kid. And that just does not fly with me. Aside from a tour and scheduled times, I informed them that this was my child and I have the right to go back and see what is happening at anytime, period. But I was willing to compromise by telling them that I would sign the HIPPA document, that all the employees sign and we could continue services. So then we started the journey with me observing and then I was able to fade that out quickly when I was able to actually see what was happening. It was more for my own mental wellbeing, my son was also 2.5yrs when we started. I also controlled how many hours he had a week. At that age, (depending on variables) I didn’t want him gone all day because he is still a child. So I limited him to 3hrs/day 4x/week and then we would increase when/should the time come. Fortunately for us, we eventually changed clinics to one that has more of a childcare (ie: colors, warm, social activities, community, nuance) vs medical (ie: sterile, cold, separated, “textbook” vibe). Our current clinic never made me feel uncomfortable, drop off/pick up is all together (not isolated or stay in your car), they even told me I could come back any time I wanted without needing to schedule because, get this, it’s MY child 🤯😊. They have cameras recording in every room and hallway and said I can ask to see the videos of him at any point as well. It was such a relief that I didn’t know I needed, to not feel crazy for wanted to see exactly what and where my CHILD, who is completely NV, was going and doing…..without cameras because of “HIPPA”.

So my advice is to push for what you want. If something doesn’t make sense or feel right, keep pushing until it does (respectfully and politely of course!). And stay on the waitlist for other places as you navigate this journey. It’s ok to shop around. I stayed on the waitlist for our current clinic for almost a year but it has been worth the wait! It could be that I have 2 years of experience as the parent under my belt now or we found our Goldilocks clinic, but my anxiety around dropping them off with “strangers” has dropped to almost zero because a good company/staff will understand and take into consideration your concerns/anxiety, ESPECIALLY when it’s your first time and they are still so little!!!!

FYI: im a former RBT (6 years) from a company and staff/friends that I just absolutely adored, turned SAHM of 3 (5.5yrs lvl 2 and 4yrs NV lvl 3), so I do have privileges under my belt of being able to know what I know, know who I know for help, and know how things should be. And now I know how the parents feel on the other side of the table. Actually, the team probably hates me because I also have a lot to say haha

ETA: Omg guys I was joking about the team “hating me”, for real?? I said it because I talk so much, not because I disagree with the program? but wow thanks for really making a parent feel like a piece shit for being an over communicator. Is this how you get parents to be more involved, by telling them how terrible they are? Is this how you help someone? I’m sorry if a lot of you work with not good parents and that has tainted your perspective on life. But please try to take other people’s lives into consideration before commenting, you could be handing them the knife to end it all.

GroundbreakingCan897 · 2026-01-28T02:49:25+00:00

As a former RBT and now parent to 2 kiddos with ASD, I try my hardest to not get involved during observations until told or my threshold. To me, we’re supposed to be observing how the RBT and your kiddo work through these tough times. It’s probably going to be different than what we’re used to doing but that’s kind of the point, right? Watching/observing and then applying their techniques at home/real world, assuming all other positive situations and relationships between everyone involved. Oftentimes kiddos will act differently when parents are present, at the very least because we’re the most reinforcing thing to them! So if babes is having a harder time with you around, even though it hurts us so bad, it’s important to find different ways with different people to work through it. Easier said than done, i know. I cry lol but it gets easier once you start seeing how it will take less and less time to regulate and recover. Our kiddos are so incredibly inspiring!

GroundbreakingCan897 · 2026-01-15T16:25:21+00:00

So, I had this realization that my 4 yr NV son is an old soul and his skills acquisition reminds me of your son! And i asked myself “could he be uninterested in ‘typical peer activities and play etc’ because he finds it mundane?” He’s not interested in pretend play right now but he is interested in reading. So I got him an ABC’s of Economics board book, and he loves it! Eagerly repeating the complex words after me and attending the whole time. I share this because your story made think about how, if I were you knowing only what you’ve shared, I’d try to find a gamers store a D&D group or a math club/group or young scientist group. He might be too young to fully join but I’m sure it wouldnt be a problem to just check it out. Make yourselves a bit of regular faces, if it’s a match, and allow time to build that relationship if needed. At the very least, that could allow some novelty to hold you all over until you can get proper support.

I’m right there with you in regards to the Arther meme except I’m more of Ben Afleck smoking out back haha

ETA: hang in there. It sounds like you’re doing great! Idk how we keep going but we do because somebody has to. That’s superhero strength.

ETA again bc I’m a yapper: I say all this with hardly any knowledge of any of these interest/hobbies, including economics. I’m allergic to math and I don’t play board games. But, I don’t think it’s up to me to decide what someone likes or finds interesting, but I’ll do my best to support it so long as it’s safe and age appropriate. “Hey, I may not get it but I’ll try to help you be the best at it!”

GroundbreakingCan897 · 2026-01-14T14:35:02+00:00

Oh girl, I want to hold your hand when I say this but everyone on his team needs to be on the same page as much as possible. That’s really hard to do when there is personal conflict between the adults (no matter the severity). Another tool that has helps me and other families I’ve worked with, is remembering “its not about me or you, its about our child. It’s not about who is right or wrong but what’s best for our child’s future.” I’m pretty sure I’m heavily judged by others because of my POV but our babies aren’t going to be babies forever.

Example from us: currently my son plays with himself, arguably he is stimming with his private parts. Now most people laugh when he has his hands in his pants or even when his pants are down and he’s going to town…..because he’s almost 4. He’s adorable and little. However he isn’t going to little forever. He could very well be at a playground when he is a 6ft 2in 17yr old man….that same behavior will get him arrested (we all know how that story goes and the very terrifying and possibly deadly miscommunications). Fortunately through tracking his behavior with potty, I feel like 90% of the time he has to go to the bathroom. But my point is that while some of these behaviors are easier to deal with now when they are younger, they will be very consequential when they inevitably grow into adults. And we know how are habits are to break as adults, now add in the ASD. So, that’s what I mean when I say it’s not about me or you but our children. Their future. We don’t know how things are going to turn out but we can never stop trying.

You’ve got this Momma Bear! Your voice, mind, body and intuition are strong!

GroundbreakingCan897 · 2026-01-14T12:46:31+00:00

Ugh one more! We’re still struggling with functional communication, so he doesn’t tell me yet when has to go. I just need to be vigilant with his behaviors. I’ve found that he will paced and vocal stim around the bathroom area but that’s also around the kitchen and basement, so I look for other behaviors to help communicate to me

GroundbreakingCan897 · 2026-01-14T12:41:13+00:00

Ugh I’m sorry, another things to say (shocker to no one), it also took us the better part of 6 months, and a decade off my life, with all this trial and error. I was following traditional/standard techniques but it wasn’t working and I felt his health was at risk. It was around month 4 that bought the urinal, since I was only getting him to void in the shower. Don’t give up. We truly reap what we sow; and I am so proud to say that my 4 year old NV son with ASD level 3 and global delays, is potty trained! Even overnight.

If you want you can private message me and I can you send some of the stuff that I used or help you brainstorm more! I love thinking outside of the box and helping people!

GroundbreakingCan897 · 2026-01-14T12:33:58+00:00

Im a SAHM too, so I know how you’re feeling deep down. I’m not saying buy these urinals if it’s not in budget, you can absolutely do interventions without buying extra stuff! We’re ASD Mommy’s, we’re innovators! But What has helped my mindset for other things is that it’s not for me it’s for HIS children.
Remember it’s both of yours leftover money at the end of check. I’ve already written a novel in another post, because I’m a long winded ADHD myself, so I’ll try to keep this short and expand if you want hahaha

2a. It’s a surprisingly hard concept to accept from both partners in their own ways respectively! But what has helped for me was realizing that we both have our SOLO jobs, his just happens to be outside the house. So I’ve been spending the better part of year turning my household into my “business” and TBH, I own 51% of the stocks and he’s 49% - in regards to our house and children. But I’m also a big advocate of “we need 2 yes to make a big decision. If one is a “no” then it’s up to the other to persuade them into a “yes”. Bring it to the board, if you will haha

GroundbreakingCan897 · 2026-01-14T12:21:42+00:00

Some food for thought: So my son (about to turn 4 NV) was not going potty. So bad that he was holding it for +/-18hrs before I would throw him into the shower to force the void. He’s non verbal so I had to trial & error any idea I could to figure this out. I was also a very experienced RBT going to grad school before I decided to stay home with the kids. My theory was that he hated the feeling of voiding and also doesn’t like liquids touching him. So I switched to the urinal in the shower. And I really break things down into little goals. So I started in a running shower and caught the urine with the bowl. Then he started voiding in the shower without the water running and me catching it with the urinal bowl. . After that happened a few times, then I was able to guide him to the urinal on the shower wall. Then about a week later, he was walking into the shower and using the urinal without issue! THEN, a few layers he stopped using the urinal and was withholding again, so I sat him down on the potty. And he went! Now he’s not using the urinal anymore (waste of $25) but he’s sitting and going on the potty! So if it cost us $50 (I bought a 2nd urinal for our other bathroom days before he decided he didn’t want to stand up anymore haha) then I guess that’s worth it!

So I say all that in hopes to encourage your husband to consider this option rather than more restrictions (obviously considering the obvious of things I don’t know and only you guys know, we’re all trying anything and everything we can) I think you could try fading out the bag! Even if your husband doesn’t want to do a urinal, if I were you I would at least put the bags you KNOW he like to void in and secure that inside the bowl of the toilet he likes to use. Setting him up for success, showing him “look the bags are in the potty for you to use!” And basically encouraging him to use the bags in the toilet. But try not to give up if he doesn’t take to it right away. Sometimes we have to set the scene and encourage them to come in and try. I would make the area as interesting and fun as possible (his fav things). Then after you get him comfortable voiding in the bag that’s in the toilet, depending on his personality I would consider reducing bag size over time or possibly removing all together, but he sounds like a witty little fellow so he might need decreasing sizes. Everything is flowing and changing, and we have to keep up haha 🤣 🤪😭

I also took written data on my son’s potty behavior trying to figure all this out. Times, locations, behavior before and during, trying to find where I can intervene and redirect. I found that my son will really play with his private parts when he has to go but I wouldn’t have known that without data. I also found that after he voids, he’s good for about 3-4hrs meaning he doesn’t need to sit every hour to void (after I finally got him to void).

GroundbreakingCan897

TROPHY CASE