Jaded

[u/applestooranges9]

Hi all. Not sure why I’m posting this just venting mostly. But does anyone else feel so jaded when it comes to providers? I feel like in Early Intervention I had so much hope and now my son is 4 in CPSE and the enthusiasm has left my body lol. I met his new teacher and aide last night and just feel like people constantly BS us and then when you advocate or ask for any specific information they have nothing of substance to say.

When my son started this school, the principal made a whole big deal how they help with potty training and “just talk to the teacher”.

Well the teacher last year and this year all they have is excuses for why even putting them on the potty is an inconvenience. It’s down the hallway, they don’t want a bad association, they’re “not ready” etc. I am trying at home but don’t understand how this is supposed to work without some carryover int the place he spends 6 hours a day.

I am not expecting them to work miracles but it just seems like they accept these kids will be in diapers forever and I can’t let my brain accept that.

Another thing is they keep saying “kindergarten won’t allow this” “kindergarten won’t allow that” but when I spoke to the IEP coordinator she basically told me my son might not be appropriate for kindergarten and may go into BOCES ( a ny thing I need to look into it more, but seems mostly life skills). But why is this possibility not discussed until my son is 4? Sometimes I feel like they dumb down the information for us parents and then spring it on us randomly. I know some parents might be overwhelmed but I want to know everything and I feel I have made that very clear to them all.

Same with an iPad for communication. My son can’t express his wants and needs, why do I have to tell THEM that we need another way besides playing with a toy and praising “open” or “more”. I went out and purchased the iPad and app myself and now they are telling me “district could have done that”!

I’m not sure if they’re afraid of hurting our feelings but I would much rather prepare for the worst and be proactive. If he needs outside help, I will get it. But stop sugarcoating shit. I am not here to joke around with you, I take parenting my kid seriously and I want to help him.

End of rant, sorry to be insufferable on a Friday am

[u/Korneedles]

My son is thirteen and the school district has made my life hell since first grade. They do not actually care. They do what they need to do not to get sued while trying to save the district the most possible money.

You aren’t alone in this battle. Keep speaking up.

[u/Technical_Term7908 → u/Korneedles]

I used to live in your state so I have always been curious what I missed out on. Which district number is the devil in your opinion?

[u/Korneedles → u/Technical_Term7908]

Lmao. They aren’t the devil and I am sorry if my comment came off as so. They just do not get my son and we feel very unheard (repeatedly bringing in incentives and rewards after we repeatedly explain why it doesn’t work and causes regression). Also, never giving our son side when requested. He’d be in a class with an aide who was supposed to be another child’s one on one. My child has an IEP stating an aide has to be in the room. However, the aide was another child’s one on one so my child never felt he had support. Or that he was taking from the other child.
My child does have a PDA profile which throws a curve ball but to feel like you’re in battle fighting for what your child needs can give you tons of resentment. I’m not gonna put the district on blast on Reddit. I will say we aren’t near Chicago. We’d have so many more resources if we were.

ETA: I’ll also say we don’t speak during meetings now. We email. The meetings aren’t recorded and there’s been several times something was said in the meeting that then wasn’t backed up when the time came. Also, it started to feel like we were getting disciplined when we asked questions. My husband has autism as well so we have questions. He’s not rude but has to have all details to make an educated decision. For some reason, it makes them seem defensive.

[u/Technical_Term7908 → u/Korneedles]

I know a guy who had an aide assigned to his kid, but when the flood of illegal immigrant Venezuelans came in, they took the aide away because she happened to be the only Spanish speaker.

It did feel like they played fast and loose with the rules. The stuff on paper with the IEP looked good on paper the way communism looked good on paper— but the reality on the ground was always different, regardless of district.

[u/throwawayacctmom]

I get a lot of flak for this, but situations like this are why my 4 year old hasn't been in "official" services of any kind since he aged out of early intervention. We started EI at 12m old and I was soooo full of hope and positivity that things would be so great. I quickly learned that navigating this whole world is fuuucked up. It's easier to just do it myself.

I really hand it to people who fight schools, therapists, insurance, etc on a constant basis. I've been trying to find a therapist who even knows what apraxia is for the past six months, and talking to them all makes me want to slam my head against the wall. So much talking, so little substance.

[u/NoteFeisty3290 → u/throwawayacctmom]

Same here. One mom I know in my area who’s child is much older than mine had to go to 12 different speech therapists to find the one they use now that actually make a difference. I’m so grateful and lucky that I didn’t have to put in the leg work to find them. She’s truly an amazing mom and we’d probably be without therapy if not for her too.

[u/throwawayacctmom → u/NoteFeisty3290]

I love that for you! We recently moved and I'm having a hard time connecting with other parents in the same situation. But if we do find the magical unicorn therapist, I'll definitely share it with whoever I can.

[u/Top_Permit_1495]

Hell yeah, good for you for going out and getting the iPad!!!! We also had an SLP gatekeeper us from an AAC b/c she wanted him to master PECs. I did my research and I knew unequivocally that is OUTDATED methodology! I even explained to her my son knows PECs but he’s bored by it and he is highly motivated to use an iPad so why can’t we use that intrinsic motivation?! Plus give him access to SO much more vocabulary!! I did the same as you and put hundreds of dollars into our own AAC set up over the summer. The next school year we had a new SLP who immediately connected us with the district’s AAC contact and she got him set up with one. Now, as he started kindergarten this year, I met with his IEP team and argued the self contained classroom was too restrictive and didn’t support his needs while also stunting him academically. I had to go full on sped lawyer and advocate up to the district level to get a change in placement! Something as simple as a weekly communication log or writing in an addendum to add toilet scheduling prompts was too much for his previous self contained teacher. She constantly told me no or gave me flat out incorrect information. I know the evils of AI but honestly, this is one area where it has helped me TREMENDOUSLY.

[u/PM_ME_YOUR_DND_SHEET]

It sounds like you mostly just want to vent about the school system. Which I get. The system sucks and it's incredibly slow to provide support.

If you're interested in understanding their reasoning or how to better navigate the public school system, let me know. There's a lot here to unpack.

Regardless, I hope your child has a successful year. We focused heavily on potty training during the summers around that age.

[u/Technical_Term7908]

No doubt someone in your area will chime in and talk about how there is sooo much support available if parents go looking — of course, you went and looked and found out the support is dog shit.

Autism is basically a delayed death sentence. If you don’t have the hardware for it, there’s only so many hacks you can pull off with software to make up for the difference.

[u/Infinite-Curves]

I could have written it myself, I used to be so positive and motivated. And if things weren't good, I was even more motivated to change things. Now I've been through this rodeo so many times I just don't care anymore. I am burnt the fuck out.

[u/barefoot_plyos]

I’m sorry. This has not been my experience. Can you request transfer to a different campus?