My 12-year-old daughter is 2E with ADHD (inattentive), depression, anxiety, slow processing speed, and a visual processing disorder. She goes to therapy and is currently taking medication (clononidine, quetiapine, and fluoxetine). She has a 504 plan as well. She began refusing school at the end of 5th grade, she's now in 6th grade. She became overwhelmed with project deadlines, homework, classwork and social situations - all things 504 is supposed to address. She attended a program for school refusal and it helped her anxiety, but she didn't return to school that academic year.
We sent her to a small catholic middle school as a smaller environment is better for her and our public middle school is huge. We also thought the structure of the school would be helpful. Turns out the school was very rigid and heavy on homework. She was always exhausted when getting home from school and was often unable to complete homework assignments - and a couple teachers had a punitive and shaming approach to incomplete assignments. The school followed her 504 plan and gave her accommodations for a reduced homework load; however, she still could not complete what was assigned. This led to refusing school again.
We changed schools, at this very late time in the year, to an even smaller school, but one with a progressive philosophy that gives students more agency in their learning. She loved the environment when she visited for the day and loved her first day of school, but has been refusing to go since. She refused to attend the school refusal program. Since she did not attend the program they said she should be in an in-patient program. We did not want this for her but now there are no other options besides 1x a week therapy. She has been out of school, sans 1 day, since March 4th. She lies in her bed with her cell phone most of the day. We are getting some assignments from school that she reluctantly does with my support. We are working with the school on a plan to ease her back to finish out the year but it hasn't started yet. Has anyone had this kind of experience? Do you have any suggestions/advice?
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I am so sorry that you are going through this. I have not experienced this personally but have a friend whose son has bouts of school refusal as well (off and on x 2.5 years). It sounds as though you have connected with good resources already, but just in case I’ll share two that my friend found helpful: schoolavoidance.org and adayinourshoes.com/school-r.... My friends son is also on the spectrum and some of his refusal seems to result from social overwhelm and demand exceeding capabilities. He does not have an IEP or even a 504 because he doesn’t “appear autistic” (I realize this is ridiculous, but some apparently don’t understand how diverse the spectrum is) but clearly he does need more support. She is homeschooling the rest of this year and looking to get a more though eval and IEP and FBA for next year. It is a struggle and one that I don’t personally have experience with so I hope others chime in. So glad you’re here. This is a welcoming forum.
from what I understand, school refusal is more common among people with ADHD and ASD. It also sounds like your daughter’s depression is not being treated effectively if she’s lying in bed all day with no other interests. One thing we did with our daughter who had school refusal was to make staying home more uncomfortable than going to school. Since you’ve done school refusal programs, this is likely something you have tried. We told her we loved her, but that going to school was important. She could stay home if she needed to, but there would be no phone, TV or computer. The first few times she said she needed to stay, but the day without her phone was so uncomfortable she eventually went to school. We have had some problems with her skipping classes, but managed to work with the school so that has gotten better. Over time, she’s gotten in the habit of going to school and things have gotten better. Not perfect, but better. The consistent message about school being important helped. My daughter is also very social, so missing out on friends is also a motivator, which may or may not apply to yours.
I agree with making home more uncomfortable. I learned this from DBT parent coaching. I created a list of chores that would have to be done if our daughter didn't go to school. no phone except during lunch break. This worked well for a period of time.
sorry, one other thought. You mentioned your daughter’s phone. The evidence of the link between phone use, anxiety and depression is mounting. My experience is that my daughter uses it to self sooth and to avoid, it is comfortable and addictive. Since your daughter is under 13, have you considered removing the phone altogether or replacing it with a gab or bark phone that has no internet access? It may seem like a radical idea, but if I had to do it all over again, I would have waited longer to give her the phone (she got it at 13) and would have removed it when she was showing early signs of challenges with self regulation. We have worked hard to get balance with her and things are better, but the fact is, the phones present a serious challenge for some kids and that very much includes kids with ADHD and ASD.
Yup. Though a lot of my phone worries stem from my career in the criminal justice system. My son has a flip phone we just got him because of issues with field trips and clubs ending early. We live in the country so he can't walk home. Anyway, that phone would be gone if she were mine.
First, I am so sorry that you are going through this. Though I have not experienced this exactly, I do know the frustrations of working as a go-between for a challenged kid and a school system not set up to work with them. I hope that you get something from me and the other posters, but above all, know that we support you.
The first thing that I wonder is if you have gotten a neuropsych evaluation for your daughter. You listed a bunch of diagnoses so it appears that you have, but I wanted to ask. Other posters have been curious about a possible ASD diagnosis, and I wondered about OCD. As I am sure that you are aware, having a precise diagnosis helps to determine next steps.
The other thing that caught my eye is that she has a 504 plan but not an IEP. Would her visual processing disorder qualify her for an IEP? I say this because my son (whose profile is extremely similar to your daughter's) was flailing on a 504 plan in middle school. We were able to have him evaluated by a speech language pathologist who identified a language disorder, and this qualified him for an IEP. Mind you, this took A LOT of advoacacy on my part, but today my kiddo is in 10th grade and has Resource Room twice a week -- it has made a world of difference. Things aren't perfect, but so much better than on the 504 plan.
Hi there! Your daughter sounds a lot like ours. In fact, she's in bed right now.
We ended up going back for more neuropsych testing and she was diagnosed ASD (in addition to the ADHD inattentive presentation.) She is doing much better these days and I owe it to a PHP she attended this summer. 5 days a week 12-5pm. She met others with similar struggles and she learned many valuable life skills and gained some confidence. Once school started and she has graduated from the program we realized she still needed additional support. We found a fabulous program that focuses on DBT therapy. It was 100% remote/7 days a week for 12 weeks. They even have parent coaching 1 day a week and I found this incredibly helpful. We also have a wonderful therapist and psychiatrist that manages her meds –– ADHD and depression. The "dream team" was hard to create (took years) but was well worth the effort.
We also have an IEP and work very closely with the school. She is 15, and to be honest, it's a tough age for any girl in 2024. Homework is still very much a challenge and brings on intense stress and unhappiness. As parents, we've learned to celebrate her strengths and accept that her high IQ and slow processing speed is ok. She learns differently and we all have to adjust to live in her world because its hard for her to live in our world. This summer, for a month and a half, she will be attending a private school that has one-to-one teaching. She's missed so much school and this will be a way for her to catch up. Our daughter is an amazing artist and musician. We really embrace and encourage these "super powers" and this gives her much need confidence and much needed joy.
I'm sorry to hear of your struggles. It's A LOT! Please don't hesitate to reach out privately. Also, your screen name happens to be my daughter's nickname.
is there a way you can request a 504 meeting? You can request to do no homework and for school to help accommodate, have a study hall each term in lieu of elective classes. Some middle and high schools do this.
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