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fetmom

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Reply with quote  #1 
Hello all:

My d is 14 years old and registered to begin 9th grade (high school) this fall.  Her dx is anorexia/binge purge subtype. She was in a PHP in our city for 3 weeks and her condition deteriorated in that time.  She has been in a new PHP with a higher level of care in another state for about 10 days and we have seen some drastic improvement in eating.  Not counting on anything but relieved to have some good news and see a lot of good food go in her.  I expect that she will still be in this program when school starts in the first week of September.

Nothing is more important to her Dad and me than her recovery.  Naturally, she wants to start school on the first day and is starting to ask us to transfer back to her old program if she is ready to "graduate" to IOP.  We are unlikely to do this for a number of reasons.  I know she is worried about school and missing the beginning of high school. I plan on going into talk to the school next week when the building opens about options.

Does anyone have experience starting a new school with a medical absence?  Any tips?  Also, she will be attending a large public high school. She wants that desparately to stay with her friends.  But part of me wonders if we should consider a smaller, alternative high school where she might be more of an individual and where ED behaviors might be noticed.  Thought also about a very small private high school...more personal attention...but the kids there are all very academic (as is my daughter) and I don't want additional pressure.  School anxiety, perfectionism, and school/work avoidance are all part of her profile.

Any wisdom welcome!
















Torie

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Reply with quote  #2 
Quote:
Originally Posted by fetmom
Also, she will be attending a large public high school. She wants that desparately to stay with her friends.  


And how do YOU feel about her friends? Kids suffering from AN tend to draw each other to them like magnets. If she's in a good crowd, that's worth a lot - the friends she would make at the other school might not be as healthy. OTOH if her current friends are all size zero, maybe best to put some distance between them and your d.

There's a great post here by Doctor Peebles of Children's Hospital of Philadelphia that is a document she was working on for parents to give to their schools. It explains that a child recovering from AN should be treated like a child being treated for cancer or any other life threatening disease - if you would require missed work/tests/quizzes to be made up for a cancer patient, then those can be made up by ED patient. If they would be excused for cancer patient, they should be excused for ED patient. It does a great job of spelling out oh heck, I'll just go find it ...

http://www.aroundthedinnertable.org/post/feedback-on-a-template-for-letters-to-schools-6272456?pid=1277427088#gsc.tab=0

It would be great if your team could provide you with something like this or perhaps just print this one out and take it to your school ... CHOP is one of the premier children's hospitals in the US - I think the first one, too - might help whichever school your d attends understand how serious EDs are.

Please keep us posted. Best of luck. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
momtobeauty

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Reply with quote  #3 
Hi Fetmom,
High school is a big transition, especially for sensitive kids. I wish we knew how sensitive my d was before this transition as that is when everything really fell apart for her. Her issues were concealed in middle school because she had good attention and a close peer group.

It's great that you're aware of your d's issues and able to plan ahead. First mistake we made was that we did not insist on any accommodations for my d for her dyslexia which had been well-managed in middle school. She had an IEP but we didn't notice right away that the teachers in the large high school didn't pay attention and she did not say anything about it right away. Second, her timetable was different from all of her friends from middle school as she took an advanced language class that caused scheduling issues. In retrospect, that was not a good idea but I did not forsee the issue. You could probably anticipate these kinds of things and avoid some of them with good planning (make sure some friends are in her classes, make sure teachers or guidance know her issues in advance and will communicate with you, etc).

We transferred my d to a small all-girls private school thinking things would be better but it was actually much worse and she was bullied there and that's when her ED came. I wouldn't necessarily think a small private school or alternative school would be better unless they have better support and accommodations and are more relaxed and accepting. She entered this school six weeks into the school year and that might have been fine if she was healthy and not already stressed and maybe if she already knew someone there.

If I could go back in time (don't we all want that..) I would plan the transition to high school better, making sure my d had accommodations that were followed and wasn't separated from her middle school friends and I would chill myself out about my own expectations for her academic success which I didn't realize were very stressful for her. I would think starting later and healthier would be better than starting on the first day less than healthy.

Best wishes to you and your daughter.
lnickel

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Reply with quote  #4 
Your daughter is entitled to a 504 plan due to her medical diagnosis. This would allow for missing assignments to be excused or modified when she is absent. You would need to meet with the school and whomever is their 504 coordinator to develop the 504 plan. You would need to bring your medical diagnosis from the medical doctor to support the need for the 504 plan. Definitely worth it though.
hopefulmama

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Reply with quote  #5 
Hi fetmom - 

Good for you that you realize that her health has to come before school.  It took me  along time to figure that out.  I kept thinking that if she just led a normal life, the anorexia would get better.

My d was a junior in HS when diagnosed. She ended up missing most of the second half of her junior year and most of her senior year because of her anorexia. She attended a small, all-girls private school.  In retrospect it was not a good fit at all.  The first year the school was awful about offering any accommodations.  At the end of the year the administration was more concerned about my d dragging down their AP scores (very high academic school) than they were about what was best for her. The head of counseling actually told me that if my d "couldnt get her act together" we should look into enrolling ehr in public school.  

We only chose to go back because we didn't really ahve another choice. t was her senior year and there was a two month wait in our public district for homebound school. By her senior year, the accommodation function had been taken over by someone new who had a history in public school and knew the law. She was very helpful and kind and was instrumental in helping us just get my d graduated.

All of my d's struggles played out on a very public stage at her small school.  We too experienced social media bullying and she was known as the "sick, crazy" girl. There were also lots of girls there who had untreated and/or undiagnosed eating disorders which complicated things even more.  I think it may have been easier for her in a large, public school where she could have just disappeared and where they were more experienced dealing with kids needing accommodations.  

There is no easy answer I'm afraid.  The good news is that with evidence based long-term treatment, my d is now fully recovered. Despite her issues in HG, she was still able to get into her dream college out of state and she will graduate in May.  (We did keep her home the first semester to give her more of a foundation in recovery.) 

Good luck to you in making difficult decisions.
 

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Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
fetmom

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Reply with quote  #6 
Thanks to all for your kind responses! Lot's to think about here.

 Torie, you raise a good question with what are your friends like.  "Friends" is, I think, a codeword for "T," her best friend since 2nd grade.  I have no reason to believe T is eating disordered and she has always seemed like a solid citizen to me.  There are other girls in a group that she is loosely friends with since elementary school.  But, I don't believe she tells me everything and there could be school friends I wouldn't approve of that she doesn't talk about.  

Lnickel, I hope to meet with the school sometime after they reopen next week and ask for a 504 plan. Hard to know all of what to ask for.  Obviously we will need a late start to in person schooling, possibly home hospital or online classes to begin. Once she is there, no health class, no pe, leave for medical appointments, and...something about how to handle lunch. I'm sure she'd be so happy to have me come down for lunch everyday.  Anyone had luck getting a highschool to supervise meals?

Momtobeauty and hopefulmama, you have both touched on my concerns about sending her to the smaller, private school.  They don't have the experience or resources in accomodating special needs. The alternative school is very alternative...4 hours a day 4 days a week with individual pacing and a learning contract.  Supposed to be high value on individual relationships and teachers know everyone, etc., but I'm wondering if it is not enough structure. Also she knows no one there.

Realistically we will probably keep her at the big public highschool and push for accountability to a 504 plan.  Our PHP will help us work with the school district and the PHP has a teacher on staff and "school time" to help with any online school/assignments.







sahmmy

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Reply with quote  #7 
Hello fetmom,
You asked if anyone here has had success asking the high school to supervise lunch?
There are several here who accompany high school d at lunch, myself included. I show up at the office and sign her out. There are 2 restaurants nearby, so we alternate each day. She isn't happy about it, but complies. I frequently offer to take a friend or two with us, but she has never taken me up on that. I've also offered to bring lunch, and she can eat it in my car; she did that once. Sometimes we are a few minutes late getting her back to class on time, so if you plan to do a 504, you might want to put in there that it not be held against her if she needs more time to finish eating lunch.
Love*Power*Fullness

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d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
Torie

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Reply with quote  #8 
Quote:
Originally Posted by momtobeauty
make sure some friends are in her classes


In my experience, public schools are pretty good about that kind of thing, when our kids are having trouble. (They might not be helpful or understanding about lunch or academic issues, but they'll address the social issues better, in my experience. Not sure why.)

So I second MtB's suggestion about making sure some friends are in her classes.

Please keep us posted. xx

-Torie


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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Psycho_Mom

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Reply with quote  #9 
Hi,

Good for you for realizing that health has to come first. Our d got sick near the end of her first year of hs. Although our d had anxiety long before hs, I think the stress of the transition to hs was a big contributing factor to her anorexia. After our d was diagnosed, she was able to stay in school (barely!) and we did this by making it clear that her health came first, and that every meal and every snack would need to be supervised and eaten completely, and if not...no school. I met her for lunch for a while, and had to facetime with her for snacks for a long time after that. She went to a private school so we didn't go the 504 route, but her school counselor was very accommodating and respectful. Our d used her office as a private place for facetiming me, and for storing snacks, and as a safe place she could go to whenever she needed.

Our d never purged in any way however, so she didn't need to be supervised outside of meal times. Your d however may need much more supervision than it's possible for her to get while going to school full time. PErhaps one thing you could ask the school about would be starting out going half-time, or just taking one class at school and the rest online, until your d shows she is able to avoid purging. No, your d might not like that option, and she may get behind in classwork. But you know what? Too bad. As you say, her health comes first. The first year of my d's illness, she started to refer to my "Too Bad Face" because a lot of the decisions I had to make for her health were not ones that she was happy about! Too bad! (Ps. She's well now and our relationship is good.)

best wishes,


__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
fetmom

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Reply with quote  #10 
Thanks, Psycho-mom. I am planning on setting meeting with school next week and talking about online/remote learning options for at least the first semester.

I also feel like I am giving the Too Bad Face every ten minutes.  We have been in PHP two hours away from home for 2 weeks.  She is eating 100 % and wants to come home for a day visit.  We were leaning toward "yes" with a very specific contract...stays in public rooms, no exercising, prenegotiated eating, leaving at pre-agreed time, visit with friend only in house, etc...but her team is against it.  They are afraid she will have a meltdown when it is time to come back.  I want to say yes to something, but is it negotiating with the eating disorder?  I don't want to do anything to derail her treatment.


lnickel

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Reply with quote  #11 
Fetmom I am a special ed director in michigan and oversee all 504 plans. You are welcome to private email me if you like and I will gladly help you. I discovered when I went to a parent support group when our d was hospitalized that many parents were unaware of this option or their child's rights and so I decided maybe this is why God guided us down this path. ....so I could help others. [smile] hugs and strength being sent your way. [smile]
Psycho_Mom

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Reply with quote  #12 
"I also feel like I am giving the Too Bad Face every ten minutes.  We have been in PHP two hours away from home for 2 weeks.  She is eating 100 % and wants to come home for a day visit.  We were leaning toward "yes" with a very specific contract...stays in public rooms, no exercising, prenegotiated eating, leaving at pre-agreed time, visit with friend only in house, etc...but her team is against it.  They are afraid she will have a meltdown when it is time to come back.  I want to say yes to something, but is it negotiating with the eating disorder?  I don't want to do anything to derail her treatment."

Hmmmm. My criteria for deciding whether or not my d would be allowed to do something was: had she reasonably shown that she would be ABLE to do it? In other words, before she could have lunch at school on her own she'd shown she could serve herself lunch at home and eat it all without help, and then we'd talked and prepared her for eating lunch at school, etc....

So, has your d been having meltdowns? Or has she shown that she can leave and come back to PHP without melting down? Has she shown that she can eat 100% with you (without her team?) If not, or if you're not sure, perhaps a smaller step, like going out for an afternoon, would be appropriate. Small steps. Or, if you think your d is ready and she's not shown any tendency for a "meltdown" and you think the PHP is making up objections, well then, she's your d. PErhaps you could also include in the contract that if there's any difficulty you take her immediately back to the PHP?

best wishes,

__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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