I am going to add a series of emails (edited of course) that went back and forth between us and Yelena's school last week. I wrote the first one to her special education teacher:

"I know that yesterday was a very difficult day for Yelena. I wanted to thank you and (the Principal and the Assistant Principal) for everything that was done to intervene in Yelena's behalf when she was being teased/bullied by some of the other girls at recess. I'm not sure if I got the whole story correctly but it sounded like someone was looking out of the window and saw what was going on. I wasn't clear how active Yelena was in reporting what was happening and asking for help. I do know that these particular girls have a history of being unkind to Yelena but I don't know if she has actively sought help at other times. She told me that this has happened a number of times before but I wasn't clear if she had told anyone about it. It might be a good idea, also, for Yelena to have some time with the school adjustment counselor after such an incident so Yelena has the opportunity to talk about how she is feeling so she can let go of it and move on with her day.

I don't know if you are familiar with the book Parenting the Hurt Child by Gregory Keck and Regina Kupecky but I recently discovered it and find it to be an invaluable resource in trying to understand the way that Yelena sees the world as a hurt child with reactive attachment disorder.

Personal hygiene issues have always been a big issue for Yelena. I wanted to let you know that Yelena washes her hair every other day with anti-dandruff shampoo. She washes her hair every Sunday night, Tuesday night and Thursday night. I wash her hair myself to make sure that it happens (too many instances of getting wet and getting out of the bathroom with no soap contacting her body.) She takes a bath every night and uses deodorant every day. So when you told her on Monday that she needed to wash her hair, I had just washed it Sunday night.

Clothing has also been a big issue for her. Since Yelena has a number of sensory issues, that has always dictated what she would wear. Believe me, she does not leave this house unless she has on clean clothes. Because there are very few things that she will wear, we wash her clothes frequently and although it might seem like she is always wearing the same thing, she really isn't. I purchase multiples of the same items if they are something she will wear so it looks like she is wearing the same thing but she really is not. We have about 5 pairs of the same black fleece pants she likes. We have 4 large grey t-shirts, etc. I think also because she has gained a lot of weight over the past year (due to a specific medication she was on that we have now taken her off of) and because her body is developing, she feels more comfortable in over sized shirts. She has actually come a long way in this area as she now wears seasonally appropriate clothing and can accept my request not to wear "dress-up" clothes (costumes) to school.

Unfortunately, Yelena has not yet developed the same kind of fashion sense that her peers have and I know this can be a source of other girls teasing her. She doesn't understand how to "put together" an outfit or what colors go together well. She has no concept of what kinds of clothes are "cool" to wear and what is nerdy, dorky or inappropriate. For Yelena, the main issue is comfort and we all know that comfort is not necessarily fashionable. My bottom line is that she is clean and that her clothes are clean and don't have holes in them. Beyond that, it is a battle that would be a mistake for me to fight.

I don't think that Yelena has any idea why her peers reject her but she does understand rejection. I think that often even helpful hints about her clothing or personal hygiene are taken by her as a rejection and she thinks anyone saying something about those things to her are being mean.

That being said, hearing suggestions about fashion and reminders of taking her own initiative when it comes to hygiene would be extremely helpful coming from yourself, the school adjustment counselor, and the school nurse, all of whom, she respects and if put to her, mindful of her sensitivity and reactiveness to help perceived as criticism, would be very helpful for Yelena.  Yelena hears things differently than a "normal" child might hear them. What I might say to her as a "neurotypical" adult might NOT be what she is hearing and I think that understanding this is really key to trying to help her.

While she was getting dressed this morning Yelena asked me what was wrong with her and why she is so different from other kids. I explained to her that everyone is different in their own way and it would be a really boring world if we were all the same. I told her that it would be great if she could help the other kids to understand that differences are to be accepted and celebrated."

This is the response we received from Yelena's teacher:

"Thank you for your response. We will continue to work on Yelena’s behalf to make sure she feels comfortable and safe here at school. Yelena never mentioned that any girls were picking on her; a teacher was looking out the window and saw what was happening. I didn’t know what had happened until after recess when that teacher came down to talk to Yelena and me. I do know that there were two other teachers on duty and one of them was her homeroom teacher. She never mentioned it to either teacher. She even came back from recess, and never said a word to me. When I took Yelena and the girls to the office, the Assistant Principal and I spoke to her and explained once again how important it is to come to one of us if she feels she is being picked on or bothered in any way. The school adjustment counselor was informed. She will check in with Yelena again today. As we have discussed many times, Yelena’s hygiene is one of the main issues that affects her relationships with the other students. She often has a strong odor, and the students can’t help but to notice. Please understand I cannot talk to her about hygiene here and not have follow through at home. Again, this is the major reason she continues to have problems with some of the other students. As I said before, we will continue to do everything we can to support Yelena!

Also, I kept her in for recess today to work on division. It is a difficult skill for her, but after today she is coming along. Unfortunately, she did her work with a calculator last night so she really couldn’t explain the process. Sometimes I encourage calculators and sometimes I need to get more of an understanding of what strategies the students are using. "

This was my husbands response back to her:

"Thanks for following up on this. We would like to make sure that Yelena is meeting
with the school adjustment counselor for individual sessions as detailed in her IEP for at least the 1/2 hour per week. After these sessions, we would like written documentation on the date and time that this occurs, as well as, assurance that her emotional needs are addressed in relation to teasing and learning strategies for coping when it occurs.
Additionally, that in these sessions, it is brought to her attention what provokes the students to tease her. Specifically, her odor. And I am sure that is not the only reason she is being teased. One strategy would be to ask the girls who are teasing her why they are doing it.

When you make comments insinuating that hygiene issues and the importance of cleanliness are not followed up on at home, it infuriates me. I thought my wife detailed the extent that we insist on this at home and before she goes to school, or anywhere for that matter. We have taken the help of countless professionals on this issue. Hygiene issues are being addressed in weekly therapy sessions, weekly family therapy sessions and with her psychopharm nurse.

Yelena has been doing better at home and is taking pride in some of her academic achievements, like last week's spelling test.

She still battles us every step of the way on the hygiene issue. Her first fourteen months of life were spent in a gown with no diapers and 30 other infants and two staff. We cannot know the full impact of these important years of development in terms of what she needed to do to comfort herself.

She is now soon to be 12 years old and has not yet internalized the constant care
and efforts we have made to teach her to learn and value good hygiene for her own health and the consequences for her health and impact on social relationships when she doesn't.

I think the school adjustment counselor in one-on-one sessions can best address these issues and become an invaluable member of our team of concerned adults that can help Yelena understand the consequences of poor hygiene, SOON after the teasing occurs. Otherwise, the anger and hurt builds in her and she'll forget the source. That is why we requested upon advisement from Yelena's therapists to have Yelena check in at the end of each day with the school adjustment counselor. I believe everyone agreed to this at our last meeting. I am not sure if that is taking place. Please let me know.

As you in your reply and others have pointed out, Yelena does not yet have the skills to report what happens to her to the proper staff, after it occurs. A form needs to set up for her to regularly be asked questions about her day's emotional experience in this regard. Yelena reports to us that this teasing occurs quite frequently. For Yelena's sake, please do not assume that if Yelena is not reporting it to you, that she's making it up or that it is not taking place.It is of great concern to us that teasing and bullying are taking place and that nobody is noticing what is happening to Yelena unless someone is inadvertently happening to look out of a window at a particular moment. I think it is noteworthy that neither of the teachers at recess noticed that anything was happening. We are concerned that she is not being adequately supervised.

If one 1/2 hour session is not enough, we will reject the IEP and insist on 2-1/2 hour sessions. We are very much concerned about this issue and the importance of addressing it now, as she will very soon be starting her menstrual cycle and entering middle school. Because teasing and bullying happens in school (and not at home) it is important to deal with it in the school setting and as close to the incident as possible. We are concerned that if this issue is not seriously addressed now, she will be at even more of a disadvantage in middle school where it will be more difficult to supervise her.

Hopefully, these strategies can be put in place and we will be sure to communicate any progress in terms of her internalization of the importance of good hygiene."

Her teachers reply:
Wow!  I guess you must be wondering what is going on.  I don’t think Yelena is telling complete stories, some parts of what she is saying is true.  First, yes she missed her recess because of all the days she has missed.  Science is once a week and she missed two weeks in a row.  We not only have science to make up, but she is behind on her social studies project as well.  We have one more reading set to catch up on as well.  The bathroom story is just that, a story.  We don’t have a set schedule; the kids can go when they need to. As far as working with the aide goes, I started editing her science yesterday, and she didn’t like that I told her she had to find more facts.  This required her to look up definitions in her science book.  After ten minutes of sitting there, she put it away and said she didn’t want to do it.  After she took it back out, she went over to the aide and asked her to look up a word for her.  I told her that for this project, she was to come to me.  I would never tell a student that they would have to be miserable with anything.  Yelena told us the other day that you were doing her homework for her, I have repeated to you and her that She needs to do it. Yelena is on the computers all the time, she has her own alphasmart that she types papers and projects on. Thanks for the e-mail, I hope this clears some things up for you, if not please call the school and we can set up a time to talk. 

My response:

Thanks for your help and getting back to me so quickly.
Yelena gets frustrated really easily and sometimes that frustration can lead to her tearing up her homework papers, having a tantrum, or saying that she just can not or will not do something.

When she is starting to get frustrated with her homework, we will sometimes help her by answering some of her questions, especially when she doesn't understand what she is supposed to be doing or doesn't have the necessary skill set to complete the work. We will try to guide her through a math process (for example) that she doesn't seem to understand or try to give her enough guidance to help her complete her homework and stick with it to the end. She does have a memory issue: so you might explain something to her in the morning but she will have no clue about what it was at 5 PM. We are certainly not doing her homework for her or giving her the answers. We try to help her understand the question being asked or to look things up but coming up with the answer or the solution is up to her.  I am sure that this is what you do for her as well.

I know from experience that one way to forestall Yelena’s frustration with things is by allowing her to take a break and move around the room, move to a different seat, jump up and down for awhile, etc.  I believe that her IEP states that Yelena needs "plenty of opportunities for movement breaks at regular intervals." It is also important for Yelena to only get one task at a time. If she is given too many things at once she gets overloaded and can't function. I believe her IEP also addresses this issue.

Yelena is a very concrete thinker. Because she doesn't have the ability to think abstractly about things that happen to her, she doesn't really have the capacity to make up stories about things either. If she understands that something is a make-believe story that is different but she frequently will see a movie or read a book and ask me if the story is "real."  Yelena's interpretation of something that happens to her can be misunderstood if you don't take into account how concretely she sees the world.

I would be interested in knowing, from your observations of Yelena in the classroom, if you find that she is frequently daydreaming and dawdling in which case she might need an adjustment to her medication or if she isn't able to finish her work in the time allotted and might need an further IEP modification that would allow her more time with certain tasks.

On 12/1/2010 My husband wrote:

I wanted to add some concerns to my wife's note below that you should also be aware of. My wife, myself, Yelena and our three college age sons and myself went to N.Y.C. for Thanksgiving. Over the weekend, Yelena physically assaulted both my wife and I. The first occasion was when the gas station that we stopped at on the way didn't have a clean enough bathroom. The second was on the crosstown bus in Manhattan when my oldest son in a calm voice asked her to sit down as she was blocking passengers being able to get onto the bus. By physical assault, I mean pummeling us with her fists. On Saturday night, as we were taking my oldest son out for a farewell dinner, my wife was helping her pick out clothes and she did not like the choices and again she started by punching her and then grabbed a scissors in the bathroom drawer and held it an inch away from her neck, threatening to stab her. When I became aware of what was happening, I immediately called the crisis team, who in turn called the police. Yelena was taken in an ambulance for a psychiatriac evaluation. Since we had two therapy appointments in the next two days we decided to take her home, instead of another placement at a residential facility. I wanted to let you know this, because her violent behavior which impulsively occurs when she is frustrated is many times unpredictable. Up to this point, with her very young emotional level of development, this behavior (as we discussed at the last meeting I attended) in addition to her reactive attachment disorder, occurs where and with whom she feels safe. When she is closely supervised 24/7 either at school, a residential facility or a camp that is highly structured she holds it together. I wanted to bring it to your attention because she has recently become violent and assaultive with some of her friends at a therapeutic program that she attends on Thursday evenings. As her physical size and strength continues to grow disproportionate to her emotional and cognitive levels, I believe that it warrants close attention.

I appreciate your care and concern for Yelena and providing her with the help she needs.

and from myelf on the same day:
I just wanted to let you know that when Yelena came home yesterday she reported to me an incident that happened on the playground at recess.

She said that some fourth graders were on the swings and had been on the swings for a long time and she asked if she could have a turn. She then said that they pushed her (and her left shoulder hurts as a result) and called her a "jerk" and said she was "stupid". One girl told her that no one liked her and she didn't have any friends. Apparently, another child told her that she had a mustache (again) but I think this was a separate incident.

I asked her if she had told the teacher on the playground or if she had told her homeroom teacher. She said that she didn't tell anyone because there wasn't any time and that when they went back to the classroom her teacher was busy. I told her that she needed to tell one of you if this kind of thing happens again and that it would be alright to say "Excuse me, I have to talk to you" to her teacher or anyone else even if they are busy.

I think that it is really important for Yelena to have some time everyday especially at the end of the afternoon to be able to report to someone how the day went. Again, I also think that it is really important for Yelena to be able to fill out the "Emotional Check-In" paper everyday at the end of the day so that she has an opportunity to discover and process her feelings and that everyone at the school has an opportunity to find out what is going on with her especially if there is bullying going on. I think that working this way will help to prevent her from having emotional "volcanoes" erupt (as she calls them) when she gets home. I have only seen this form filled out once by her since we discussed it.

Thank you so much for all of your help.
I hope you all had a great Thanksgiving.