Help- 9 year old daughter refusing to go to school, about to lose IEP

Kez508

New Member
I am just about at the end of my rope! My nine year old daughter with Aspergers/ Mood Disorder/ Anxiety has had a horrible year in her mainstreamed class. Progressively, she has gotten worse about going to school. She cries, feels nausious, dizzy, headache every morning, having raging meltdowns, scaring my other two children (ages 7 and 3). I've managed to get her there every day, late most of the time. I've had to have help coaxing her out of my van, or peeling her off my arm when we walk into school. The teachers say that she does "fine" once she gets there. She never has meltdowns at school, although does frequently ask to go to the nurse, complaining of "dizziness, overheated, headache, ect." At her recent IEP meeting, I brought my concerns to the table. I had documentation of all her nurse visits, and tardies, also a recommendation letter from the psychiatrist (she currently is not on any medications) that we need to tweak her IEP. Her self esteem has plummetted, she makes statements like "I don't belong here, I am stupid, ect." She meltsdown everyday after school, as soon as she gets home. The school basically feels that it is not a school issue. They said she is no longer eligible for IEP services. They had given her long term sub a pragmatics/social skills questionare to fill out, and my daughter scored just into the normal range. So that along with her good school behavior and average grades they are deeming her ineligible?? Well, I got up and walked out of the meeting and hired an advocate. She met with me and my daughter and we came up with goals for the meeting. We did remeet and they agreed that a full re-evaluation is needed in order to determine her re=-eligilbilty. In the meantime, we've gone from her feeling ill in the morning, to full blown meltdowns, screaming, refusing to go. Last friday, I almost kept her home, simply because I couldn't physically make her go, and I have a feeling it is going to come down to the point where I can not make her go. I've tried everything! We've got a motivational chart. I given her consequences, such as loss of her electronics/ play time, and rewards at the end of week as incentive for good mornings.. nothing is working. What do you do in this situation? The school has implemented "sensory breaks". They gave her earplugs for her lunch time when it's noisy. She hates gym, due to heat intolerance. She hates to write because it "hurts her hand" but she does it and puts up this guard and will NOT tell the teachers what is wrong, she has got this phobia that she will get in trouble or something at school. I've had it. I don't feel that she is in the right environment. Everyone disagrees with me because she holds it in in school, and she does have a few friends, but she always has these misperceptions that kids are mean to her, and I think that is where alot of the stress comes from, along with her sensory issues. She is miserable and states how much she hates it there. I'm worried about her wellbeing, and the past few weeks we have seen a decline in her academic performance. I want her in a different school, bottom line. They have an autism specialist coming to evaluate her in the school setting next Wednesday, but I worry that since she bottles it in, they won't get an accurate assessment. Very stressed.. any suggestions or takes on this?? thanks!

Concerned Mom of three
 

keista

New Member
Welcome!

Poor kid.

I'm guessing she's fully mainstreamed?

Next Wednesday, tell her NOT to keep herself together. I'm only half joking. I DO tell my son that if teachers, subs or anyone else at school won't listen when he tries to self-advocate, he can do WHATEVER he wants. I'll deal with the fallout.

Even if she bottles it in, the specialist should still be able to identify at least some of the problems.

They had given her long term sub a pragmatics/social skills questionare to fill out, and my daughter scored just into the normal range.

This is a HUGE difference between boys and girls with Asperger's (so I've read since I don't personally know any girls with it) Girls by nature are more in tune to social cues and etiquette. So it makes sense that a girl with Asperger's would be more adaptive as to 'almost' function as normal. My concern is that one of the teachers who says she's "fine", who forgot or is oblivious to how many times your daughter has gone to the nurse for somatic symptoms filled out that questionnaire. If they think that constantly going to the nurse is "fine" then I wouldn't really trust their judgment on that questionnaire.

Have you found a school that you want her to attend? If not, I'd start looking into that. Maybe the next closest school in the district has a good Special Education dept? Might be easier to get them to agree if you already have a plan for her placement.

Stick around. You've found a great place for support, insights, and guidance.
 
T

TeDo

Guest
This sounds so much like my difficult child at the end of this school year. His anxiety was over the top so we tried putting him on a medication to help. In our case, he was acting out more in school and was fine at home. He did the same avoidance things your daughter is doing ie. nurse, morning meltdowns, hand hurting, etc. It was because he'd learned these things helped him avoid things he didn't like or were too hard for him. He also did not ask for help. Our school year ended with the psychiatrist ordering that difficult child be Homebound for the remainder of the school year because all the stress associated with difficult child going to school was doing him more harm than good. We are tweaking his medications over the summer so he will hopefully better able to handle school again in the fall.

The autism specialist we had did an awesome job on identifying ways that his diagnosis was affecting his education in ways the school wasn't seeing. They are usually very knowledgeable and most kids on the spectrum can't put things into words so the specialist should still be able to figure things out.

Good luck.
 

Kez508

New Member
Wow, I didn't realize the psychiatrist could do that. If it weren't for the evaluation of Wednesday I problem. would do that. That is good to know about the autism specialist. I just really hope we get some answers! Thanks for your input, and good luck with your son!
 

Kez508

New Member
I'm defenitely going to "help set the tone" for Wed morning...(half joking ;) ...I just hope that they get an accurate picture of what is going on. There is a school that is specifically for kids like my daughter that has wonderful services, but I doubt that they would pay for her to go there. I'm probably going to have to get a lawyer. I'm praying that the evaluations come back in favor of our case. We will see... Thank you so much for all of your advice!
 

seriously

New Member
be sure to get a speech evaluation done as part of the total package along with Occupational Therapist (OT) and social/emotional. You want her assessed in every area that can be assessed to ensure that any hidden disabilities are identified. If you have already agreed to an assessment plan that fails to include any area of assessment ask your advocate about the best way for you to tell the school district that you want things added and do it ASAP.
 
T

TeDo

Guest
I agree with seriously. Don't leave a stone unturned. I had to specifically ask for a reading comprehension assessment because the assessment tool my SD uses does not delve deep enough. Turned out my son had many issues with reading that the basic assessment didn't even hint at. If you don't agree with their assessments, you have the right to request (in writing) for an Independent Education Evaluation. This means they would have to pay for someone outside their SD to do the assessments again.

Just an idea but is it possible for you to talk to the staff at this other school to get ideas about what they would do for her if she were to go there? If you could get that and then (without telling your school where you got the info) go into the IEP meeting when they review the new assessments with all those "ideas" for accommodations spelled out. It might open the doors a little if you "know what you're talking about".

Good luck and be gentle with her. If her anxiety is as bad as it sounds, personally, I would keep her home except for Wednesday. Imagine what she is going through. I suffered from severe anxiety for over 2 years and it is a nightmare and I was an adult and I couldn't handle it. I really feel for her. Anyway, that JMHO.
 

seriously

New Member
I gently disagree with TeDo on letting her stay home.

When faced with school refusal AND the school is telling you she's fine and no longer qualifies for an IEP - you send that child to school.

If you can get her in the car then drive to the school. If she won't get out without a fight or actually enter the school, do not fight or struggle with her. Do not lecture, yell, plead, scold. You tell her it's time to get out and when she refuses you go in to the office and tell them you'd appreciate it if the principal could go talk to her and see if he/she can get her to go to class. Act helpless if you think it will help you get the principal or VP out there.

After that you stand back and LET THEM handle it. You do not interfere, help or instruct them. You just stand there while they deal with it. While it may be embarrassing - you want as big a scene as possible because this will do more to get through to the school than anything you can say to them in an IEP meeting. If they refuse to go out to the car and deal with her you go tell your daughter you'll be waiting for her in the office and then you go take a seat and read a magazine or whatever until she comes in looking for you or someone in the office goes ahead and tries to get her to class.

Expect this to take a long time the first few times you do it so plan ahead - don't expect to go on errands or go to work or anything else that day. Even if it takes the whole school day - this is what you need to do and it is more important.

Do it every single day no matter what.

If she's tardy or absent due to school refusal you must document every single day that the reason for the tardiness or absence is school refusal due to disabilities. E-mail or fax the school with a note that says she is tardy/absent due to school refusal. And keep track on a calendar or keep a note for every day that she's late, absent or you pick her up early to present at the IEP meeting.

Tell them you will no longer come and get her if she goes to the nurse with a headache, etc. unless she is

1) running a fever
2) vomiting
3) diarrhea

And you want the nurse to document when your daughter comes to the nurse's office, how long she stays and what symptoms she's reporting when she goes. You need to know exactly how much class your daughter is missing with her little trips to the nurse.

If you go this route - you must stick to it once you start.

There are 3 reasons for taking this approach:

1. At this point the school may already be thinking about reporting you for truancy action by the school district and you need to be prepared for that possibility by documenting everything.
2. You need her severe behaviors documented and witnessed by the school as much as possible given their position regarding the IEP.
3. In the long run, it is in her best interest to treat her as if she is capable of mastering her fears and separation anxiety to go to school as long as school is not a seriously traumatizing environment due to physical bullying, physical punishment like paddling, open humiliation or ridicule at the hands of teachers, etc.

If she really is mostly fine once she gets to school, then she needs to show up and you need to make her show up to the extent you are able. while I do not doubt that she is scared, that she finds many things about school (sights, sounds, smells) unpleasant and difficult, and she is frustrated and unhappy it is important that she discovers that she can handle whatever life throws at her and succeed anyway.

If she's not "fine" at school then you still need to get her there consistently so that the school has to cope with her dysfunctional behavior instead of you. When you make it their problem - then they will change their tune.
 

svengandhi

Well-Known Member
I disagree with one point of seriously's answer. If she refuses to go in, CALL the office from the car - do not leave an already upset child alone in a car even for two minutes.

The autism specialist can be very helpful. We had an FBA for our son (difficult child, who is not on the spectrum but the guy was an autism specialist). He figured out that difficult child was LOVING the school's punishment of sending him home when he misbehaved and that it was causing him to act out even more. Once that was stopped, he stopped because he realized he'd be punished at home for school misbehaviors (don't reallly believe in that but the school could not devise a punishment that worked - other than taking away advanced math class, which we refused to do).

A good FBA can be a great help.

Also, have you given thought to an out of district placement. We sent our oldest son - mild Aspie, ADD inattentive - to a special HS for Aspie kids and it was great. We sent another son to an out of district middle school for kids with LDs (he's dyslexic); he came back to district this year and did great but he has no behavioral or psychiatric issues. My argument was that the LRE doesn't necessarily mean the district school. For my sons, LRE meant OOD because that's where they could learn.

Good luck to you.
 

Kez508

New Member
Wow, lots of great advice! So an update.. I hired an advocate and we reconveined the IEP meeting, and the IEP team agreed that she needed to be reevaluated (however, they are calling it..possible exit evaluations from IEP) where as I'm thinking she needs it because something isnt right! So when we left the meeting, the agreement was that current IEP stays in place until we reconveine after the formal reevals are done.. meeting is set for July 28th. She has ESY written in her current IEP, but they have refused to place her.. (she has done a social skills camp for the past four years) They said "her IEP expired in June..and we are waiting for exit evaluations..)" I feel like they are totally setting us up, and breaking the law to say the least. I am a bit relieved that school is out.. so the morning meltdowns have stopped, however, we will pay for it dearly come September when she has to get back into the school routine and no ESY. I feel like it is a lost cause. She scored perfectly on her report card, yet I have three social studies tests that she failed?!?! I did save them, and plan on bringing them to the meeting. Also, an autism specialist that does not work for the school went in to evaluate her, and I did have the chance to speak with her about it, and she did pick up on some problems that were going on. I noticed on the IEP invitation, every other evaluator is listed as being present at the upcoming meeting, except for the autism specialist. Currently, I am trying to get her to come to the meeting. Feeling as though it is a lost cause though. It will have to go to mediation. So frustrated!!
-Kez
 
T

TeDo

Guest
What does your advocate have to say about all of it? Since the autism specialist isn't on their payroll, would she be willing to write a detailed report for you if she can't be at the meeting? She can be there without being "invited" by the school. You can have anyone you want at the meeting. I just went through all the "innapropriate" IEP stuff (they wanted to keep him under EBD along with autism spectrum - LONG story). I ended up meeting with the superintendent to inform him of the "antics" of the school representatives on the IEP team and was willing to go to the school board if need be, copies of laws in hand. And if that didn't work, I had mediation scheduled. I ended up cancelling mediation because I was finally heard by someone "above their heads".

{{{{(((HUGS)))}}}} to you still!!
 
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