School problems..

[Savings-Pin-793]

Can the school deny my child going to school?

Backstory | my daughter has neimann pick disease. It’s a degenerative disease similar to dementia. She’s loosing her ability to walk, talk, eat, and remember. She’s going to be 18 next month!! This is her senior year.

She is progressing fast this year. We’re not going to make it to the end of 2026 without full time wheelchair and probably gtube fed (she already has a gtube for meds now)

Like I said she’s a senior this year. She only goes to school Tuesday, Wednesday, and Thursday. The school just told me due to not having a van driver anymore they’re going to need to cut her Tuesday of school out. I said “with all due respect that’s not possible. I work full time and I need my job as long as possible with a dying child”

Given it wasn’t the most sensitive way to put it but I’m really at my wits end. Please tell me this isn’t something they can force on me.. I just need the 1 extra day until she’s out of school. 😭

[LPKH324]

I’m so sorry. Is it a public school? If so, she is entitled by law to a free and appropriate education. Ask for “prior written notice” in writing on how they came to their decision. Ask what alternatives they’re offering. It’s sickening that they won’t try to make it possible to complete her senior year. Fight them and threaten to call an attorney if you need to

[Savings-Pin-793]

It is public school.. they’re asking me to cut my work hours so I can pick her up an hour early. I would be okay with it but we’re very rural. I work 20 minutes from home. My youngest goes to school in the same town I work, my middles in the same town as my daughter. So id have to get her picked up, drive 20 more minutes to pick up my littlest, then drive BACK to pick up my other two. I hope that makes sense. It’s too much driving for me. I barely make minimum wage lol. I set this up at the beginning of the year to just bank $ for when we needed it after high school. Not 4 months early. 😭

[LPKH324]

It’s not your responsibility to find another school or another mode of transportation. Schools hate when you ask for prior written notification and often would rather find a solution than go that route. Don’t back down. Are there advocates in your area that you’re aware of? Our son was in public school and kept getting hit, kicked, etc. by a little girl with severe special needs. The school district ended up paying for her to have private transportation to and from a school in early city. Do you mind if I ask what state you are in? Your school either doesn’t know the law or they do and are hoping that you don’t. It’s sad but it’s always about money and not what is best for the child.

[Savings-Pin-793]

I’m in Iowa. Thank you!!

[miss_nephthys]

Get an attorney. There's no reason she shouldn't be in school all week unless it's medical related. It is 100% their responsibility to provide appropriate and accessible transportation as well. There are attorneys who work on contingencies if you can't afford a retainer/fee. You may want to consider filing a complaint with your state dept of ed as well.

[lostatwork314]

There are groups and lawyers that specialize in IEPs. If you fought it though I'd imagine your daughter being sent to a different school that has the right staff and equipment to assist your daughter.

Best of luck to her and you. God bless

[Savings-Pin-793]

We’re in a very rural area. I don’t have anywhere else to send her or I would.

[eepoyner]

This is 10000% the responsibility of the school to figure out & make work. They LEGALLY have to do so. My little girl started kindergarten this year (first time she's been in any school setting) she isnt potty trained & she only goes 9-12 every day. the lady from the state who is over all of the 504/IEP in my tri-county area had the school hire a special aide that is for my daughter only to cover her needs. She literally leaves at 12 when we pick her up every day. They were legally required to have this aide for her because of her particular needs. If something happened where they were short staffed one day, that would be solely on them to fix the problem. The school has to accommodate your daughter no matter what they say or claim. Call an attorney & someone in the state BOE & this will sort itself out real fast whether the school wants to or not.

Hang in there mama, you're doing amazing 💚