More Insight: IEP language and Heavy Work

More from the chapter in Miller's book, Sensational Kids:

Discussing school adaptations, LaTonya has "an Individualized Educational Plan (IEP) stating that she has sensory problems causing her to have behavioral issues that hurt her academic performance".  I took note of the specific wording here for possible use in Katie's plan.  "The plan contains specific objectives, and one of these is to calm her overreactivity so she can pay attention in class".  Again, wording that could apply specifically to Katie.

Miller goes on to discuss a particular intervention of heavy work used in LaTanya's case "for calming her overalert sensory system and recharging her batteries for the big challenge of the classroom".  In this case, LaTanya goes to the library every morning and carries a load of heavy books to her classroom- one example of heavy work.  I wonder if such a scheme would be helpful for Kate too?

Miller defines Heavy Work here as "a term applied to any activity that engages the muscles and joints of the proprioceptive system".  She had previously explained the stimulating the proprioceptive sense can generate calming messages to the brain. "Tasks that engage more or bigger muscles generally create greater proprioceptive stimulation and have the biggest effect on behavior".  

"In (Occupational) therapy, children are taught to recognize when they need heavy work and to generate it for themselves with activities such as pushing against a wall or another resistant surface, pulling a heavy load like a wagon with another child as passenger, or walking up a flight of stairs".  Miller says that "heavy work tends to lower arousal levels and reduce cumulative effect so that the child is prepared for the next sensory surprise."  and "Heavy work for LaTanya (and Katie) is the equivalent of finding the volume button on the background noise that is always buzzing in her sensory system and turning it down."

Interesting note here, on one of Kate's visits to her therapist, the blinking tic was particularly bad and the therapist decided to try some heavy work.  She had Katie plant her feet and push hard against the wall, as if trying to push it over, and then gave her a squeeze ball and had her squeeze it as hard as she could for as long as she could hold it.  She reported to me later that after this the tic was gone and did not return for the rest of their session!  Hmmm, something to think about....

New Hope

Through all our frustration over the last school year, Katie's therapist had repeatedly mentioned services she knew were available at Hayes Elementary school.  Over the summer I debated with myself what to do for Katie.  Maybe the struggles we faced last year were the natural reaction to adjusting to a new school, on top of having a less than understanding homeroom teacher, and perhaps this year would be better with a different set of teachers and the 504 plan in place that I could have beefed up to suit her needs more specifically.   But I really didn't think switching classrooms for almost every class (like in a middle school) was a very good fit for Katie, and I was seriously underwhelmed by the provision of services so far.

So when schools brought back some of their staff in Aug. I made a couple calls to see what our other options might be.  It turned out Hayes was not in our home district after all, so I would have to open-enroll her if I wanted her there. 

I called Hayes and was transferred to the director of SpEd services, explained that my daughter had needs I didn't feel were being met by her current school and asked if she could tell me, in general, what kinds of services their school offered for the types of struggles I described.  With only a brief description from me, the woman was able to tell me several things that might be possible, more that Valentine Hills had offered in a whole year. With this and the therapist's recommendation, it was clear that this would be a better fit for Katie, even if it did mean changing schools again.

I stopped by the school that evening to fill out the papers for the open-enrollment into another district.  When I walked into the office I identified myself as the mother who'd called earlier and the secretary remembered and asked if I'd been able to get my questions answered talking to the SpEd director.  I assured her that in 10 minutes of conversation I had been convinced this would be a better alternative for us.  

There was a man also standing around in the office who overheard this and casually asked me where we were coming from and what struggles we'd been having.  I told him a little about Katie and some of her needs, and I don't remember the specific wording/term he used, but he said something like, "Oh yeah, XYZ can really be an important piece for sensitive kids.", and whatever the term was, something sensory related, it was exactly the right thing for what I was describing.  Something specific to sensory processing issues that the general person wouldn't know about.  I was pleasantly surprised!

I was even more impressed when he proceeded to introduce himself as Mr. P, the principal of the school!  I knew right there that this school "get's it".  If the principal himself is familiar with the terminology and needs around sensory issues, and doesn't just leave all that to his specialist staff, then clearly it is a real focus at this school and they will have resources to help us.  I wanted to cry right there on the spot, I was so relieved!  

He talked about the importance of the right fit of teacher for kids like Katie and immediately asked me more details about her personality and learning style and promptly chose her teacher then and there. Based on her needs, he knew just who he wanted her to have.  He asked about previous services and I explained about the request for evaluation last year and being pushed into the 504 instead.  He told me that was a really backward way of looking at that process and that they have a completely different approach to it here at Hayes.  He encouraged me to go ahead and write him a letter right away to request an evaluation so we could get things rolling as soon as school started instead of having to go through the timely process of waiting for the teacher to identify her as having problems.  He even walked me right down to the office of the SpEd coordinator for their building to introduce me and let him know I'd be requesting the evaluation.  

I left that day so relieved and full of hope!  I may have even cried, if not I was certainly close.  We wouldn't have to go through another year like last year!  There were people out there who knew what to do and were eager to help!

End of a difficult year

You're probably tired of hearing me complain about Kate's school, but there were just a couple more issues I'll mention to close out that school year.

The 504 plan had stated a place would be provided for Katie to go to calm down when she got upset.  At home she has a small space behind an armchair where she likes to go, which she calls her Katie Space.  She craves the tight confined space, similar to Temple Grandin's squeeze boxes, only without any actual pressure.  No space was specifically provided at school, so Katie improvised by curling up in the space under her desk.  This was not acceptable to her homeroom teacher, however, and she felt she was "yelled at" for doing it.  Here she was, recognizing her body's need to re-regulate itself to calm down and trying to self sooth, and she felt she was punished for it.  I can understand that having her under the desk might not be ideal and could be distracting to others in class, so the teacher had every right to say this was not a valid option, but then GIVE HER ANOTHER OPTION!  

Another trick Katie tried to use to limit distractions from other kids around her while she was working was setting opened folders in front of her at the corners of her desk to sort of screen herself in, as had been suggested by another teacher a previous year.  This too was met with disapproval by her teacher, and she was not allowed to use them.  Here again, the poor girl is recognizing her need for a strategy and trying to problem solve for herself, and is met with (in her eyes) condemnation. 

What would have been the final straw, if I had heard of it before the last week or so of the school year was when Kate came home upset one day, reporting it had been the worst day of her life (not unusual that year).  When asked why, she became teary and told me she had been upset about something and was crying in class.  "But Mr Bush didn't even notice me or say anything!", she moaned.  "Finally, I just went up to him to tell him about it, but he just put up his hand (in a "talk-to-the-hand" type gesture) and said, 'Nope! Katie, nope, that's drama. Drama, drama, we're not gonna have drama now.  Go back to your seat.' "

Now, I understand that there are some attention seeking children who will and do create drama just to get adults' attention, and need boundaries set about when and how their issues will be addressed.  But that is not Katie.  When a child with identified special emotional needs comes to you crying, they need something from you. Their equilibrium is upset, and they need help to regulate themselves back to a balanced state.  Dismissing the child out of hand and telling her to go away with her messy emotions is about as far from what she needs as you can get.  

It was then that it became clear to me what her homeroom teacher's view of Katie and her needs was, and just what an oppressive environment she had been struggling in all year.  Here is the sort of person whose basic philosophy is that kids with struggles should "just toughen up and get over it".  "Quit being such a baby and just deal with it".  My God! Don't you think they would if they could?!  Do you think they enjoy going to pieces over seemingly little things in front of all their peers??! Do you have any idea how embarrassing it is for them to lose emotional control in front of everyone!? 

I found it interesting to note on her report card that in the columns marked 'Uses CARES skills'  (Cooperation, Assertion, Responsibility, Empathy, and Self-Control.) all of her other teachers said Katie did this consistently, while her homeroom teacher said only sometimes. Clearly, they were not well matched.  I still think about writing that teacher a letter to let him know how badly he dropped the ball with Katie. What a chance he had to make a real difference in her life at a really hard time, and how he'd missed it.  I had been so excited for her to have a male teacher for a strong male influence in her life, since her father is so uninvolved.  Having his support and encouragement could have given her such confidence and strength.  Instead, she got the same message I'm afraid she often get's at her Dad's house, "Quit being such a baby and just toughen up."

The Best Laid (504) Plans Gang Aft Agley

There was one more thing I wanted to implement to try to improve the school situation, but since it had taken so long to get the plan in place to start with, I didn't want to try to get it added as an official accommodation just yet.

At Kate's previous school each child was given a student planner in which to write down their daily homework, which the parent would then review and initial each day, keeping abreast of what homework was being completed, or not.  There was also space for notes back and forth between parents and teachers.  Kate's new school did not use these, but has a loose sheet called Peek-at-the-Week on which kids were meant to write their homework instead.  Well, the Peek being an individual, loose sheet, Katie inevitably lost/forgot it 99% of the time, so instead I bought a tough notebook with a folder inside to use in it's place.

I spoke with the coordinator and he approved its use, so the first day I sent it I wrote to her teachers:
In addition to the measures outlined in the 504 plan, I would appreciate it if we could use this notebook for regular communication about things for Katie.  I was told she would receive a wipe-off checklist for when she gets to her desk in the morning (re:  turning in finished homework, etc) and one for organizing at the end of the day.  So far she reports that she hasn't gotten anything like this.  Can you please check into that?

She has a hard time remembering to give me parent notes that are sent home, so please see that anything like that is put in the folder in here so I have one place to look for all communication.  
Enclosed there now is the signed copy of the 504 plan which she was supposed to turn in a week ago and I just found at the bottom of her backpack while writing this!
Please feel free to write any notes to me, or else please just initial & date so I know you saw this every day.  Thank you -

I thought this was a reasonable request and was hopeful it would open communication so I would have a better handle on how things were going each day.  The two main teachers endorsed its use the first day I sent it to school, but it was tough getting it worked into the routine.  Neither teacher had bothered to take the signed 504 plan out of the enclosed folder and pass it on to the services coordinator over the next two days and I had to write another note asking them to do so!  When Katie repeatedly brought it home unsigned I wasn't sure if she wasn't showing it to them each day, or they just weren't signing, so I wrote again, saying "If Katie doesn't show this notebook to you on her own PLEASE ASK FOR IT!"  One teacher began to use it fairly regularly, but her homeroom teacher rarely did.  A permission slip and check for a field trip sat in the folder for a week until I wrote another note asking them to check it every day.  One teacher included occasional little notes about behavior/emotional problems on some days, but her homeroom teacher only ever just initialed, so I wasn't kept aware of these issues in his class.

Slow Process

Two months later I’d still heard nothing. 

In the meantime I started my first FT job since I became a single parent, so it was a huge transition and I admit I didn’t stay on top of things very well.  Things with Katie went from not great to terrible without me there every afternoon when she got home from school to enforce our previous routines.

I called the student services coordinator back and asked about the status of the plan.  He told me he’d sent it home in Katie’s backpack!  Loose in the backpack of the kid with an identified problem of not bringing home papers!!  Without a phone call or email to give me a heads up!  And what happened to having another meeting where we discussed the services they could offer??

 He’d assumed the plan was in place and all going to fine, since he hadn’t heard any more from me!  Never mind the fact that it requires a parent signature to make it official and that he’d never gotten it back from me!  Ugh!  I was extremely unimpressed with the help this system was NOT providing!  I asked him to please send home another copy that day and I would look for it now that I knew it should be there.  He said I should read it over and let him know if I wanted anything changed, or sign and return it if not.  

Now, granted, I am not an expert in 504 plans by any means, but what I received seemed so simplistic and generic, I had a hard time imagining this was going to make a big difference.

The accommodations listed were:

- Special Ed busing                          At least they got the main issue that started it all!

- Preferential seating to avoid distraction.     Well sure, wouldn't teachers already be 

                                                                                           doing that for any ADHD kid? 

- Acknowledge positive behavior.                  Duh! Isn't that kind of a given?

- Provide space for student to calm down.

- Discuss changes to schdule ahead of time with student.

- Allow time at the end of the day to organize take home materials.

I spoke to the coordinator and reminded him that I'd asked if someone could check in with her at the beginning and end of the day to help her organize herself, but I didn't see anything like that included in this plan.  He said they'd discussed that and wondered if they couldn't start with giving Kate a wipe-off check list she could do at these times instead, and see if that would solve the problem.  I agreed to give it a shot, so they added:

 - Provide checklist to help keep student organized.

I signed the plan and returned it April 7th.  It had taken most of the school year to get a plan in place, but at least now that it existed I was assured it could be reworked in future and would follow her throughout her academic career as she moved up.