Summertime and Tics

Ha! You thought I'd spelled that wrong didn't you, tics?  But I wasn't referring to the insect variety, as in wood ticks, but more alarming nervous tics.

This was the first summer I had ever worked full time since Katie was born.  There was no way she and her 13 y.o. sister Melanie could be home alone together all day, every day, so I enrolled Katie in a park program 3 days a week, ED-Venture Club.  She enjoyed it very much as she is truly a social butterfly & is dead bored without other kids to play with.  

I believe I've mentioned before Katie's occasional problems with extreme, painful constipation. At the very end of the school year or early summer she had one of these occasions just before we left for the drive to her Dad's house (an hour and a half away).  She tried and tried to go for nearly an hour after school, grunting and groaning and crying, but without success.  Declaring herself unable to go at the moment, we loaded up on Miralax and set off on the drive.  All the way there I kept hearing little whimpers, grunts, or "hm"s from the back seat as she struggled with her discomfort.  

When they returned, I continued to hear her making the the little "hm" noises, and assumed she was still having trouble. But no, she had relieved herself at her dad's (w/lots more Miralax) and had been going regularly since.  I asked if she was sure, coz she was making that little noise like when she has to go, but she assured me she didn't.  I continued to hear it randomly, and once or twice asked her why she'd just made that noise, but she either didn't remember making any noise, or didn't know why she had.  I wondered if this was some sort of tic (I have an aunt with a throat-clearing tic) or just a habit, and decided to ignore it so as not to reinforce it. It did become very annoying for a while though, like someone next to you sniffling repeatedly.

A couple weeks later she told me that she had been nodding her head at summer program and the teacher told her she shouldn't do that so much/or so hard, that she was going to hurt her neck or head.  I found this odd and couldn't imagine what she must've been doing.  Pretending to head bang to some music on the radio?  But once it was mentioned, I started to notice it myself.  She was nodding her head randomly, and rather hard/forcefully.  I'd seen her do this now and then in enthusiastic agreement about something, maybe she was agreeing with some internal monologue in her imagination?  Or something more?  The "hm"-ing had stopped though.

Finally one night there was another behavior that couldn't be chalked up to anything else.  I'd seen it once or twice, but this night my mother asked Kate if there was something bothering her eyes, because she kept blinking, rather rapidly.  When I'd noticed before I thought maybe her hair was getting in her eyes.  It was a bit of a shaggy cut and the bangs were getting long-ish.  That night I had her get a headband to pull all her hair back, but the blinking continued.  She said nothing was bothering her eyes, she didn't know why she was blinking so much, and went on playing.  I quietly observed her and was alarmed to see she was blinking, hard, over 30+ times a minute. A definite tic.  A hard blink that was almost a grimace, pulling up the corners of her mouth as well.

I called her pediatrician the next morning and they were able to see her right away. That morning Katie complained that her eyes ached, like they were bruised.  I'm sure the muscles were tired from such forceful overuse. 

Dr Edward's first thought was that the ADHD medication could be causing it, though Kate had been on the Concerta for over a year, so it seemed strange that this would start now.  I was concerned that the Concerta may be dampening her appetite anyway, so we agreed to take her off ADHD meds for 2 weeks to allow it to fully leave her system and see what would happen.  Two unmedicated weeks sounded daunting, but she really did much better than I feared, not too wild.  And boy did her appetite rebound!! Suddenly she couldn't get enough. I knew then that the Concerta was largely responsible for her low weight and decided we were done with that for good!

Two weeks passed unmedicated and the tic was greatly reduced, but still definitely there.  We started her on Vyvance to replace the Concerta.  The nurse said tics are tricky, they can seem to pop up out of nowhere and sometimes they just don't find a cause.  Most likely it was related to anxiety.  So, for the time being we just tried to ignore it.  I'm not terribly disturbed by it, though I admit I don't like the way it looks when she does it.  It looks weird, and that's not easy for a mother, but I don't mention it.  I just don't want it to become an issue with her peers, if they start to notice it and she ends up teased about it.

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."

Too Skinny

We went to the girls' regular pediatrician in March for a routine re-evaluation of their ADHD meds for the year.  While there, it was noted that Katie was significantly under weight for her age and height, and had, in fact, lost 3 lbs. since the start of the school year.  At 8 and 1/2 years old and 4'3", she weighed only 47 lbs., giving her a BMI of only 12.73.  The pediatrician referred her to a nutrition specialist to see if there were any food allergies at play, keeping her from gaining sufficient weight,

Scrawny little thing

and/or what other measures should be taken.

Katie has always been an extremely picky eater, though I'd never been able to directly link it to anything related to sensory processing.  Many kids with SPD have aversions to or other problems with particular food textures, avoid crunchy things like chips, or mushy stuff like yogurt.  Others have problems with particular flavors, certain spices etc.  I'd never noticed any pattern like this in Kate though.  Lately she just plain wasn't hungry, she said.  I made meals which she barely ate, though she did tend to graze in general if allowed, eating little bits here and there.  As long as it was healthy stuff I didn't mind this too much.  I wondered if possibly her sensory system sends out the FULL signal before she really is, causing her to honestly think she's full and can't eat anymore at the moment, but then come back for more in a short while.

In preparation for our consult with the nutritionist I tried to start a food journal of what Katie ate and when.  When I asked her what she'd had for breakfast at school that morning, she told me she hadn't gone to breakfast.  When I asked about the day before, she hadn't gone then either.  All school year I had assumed she was eating breakfast at school because it was provided to everyone at no cost and I knew she got there in plenty of time.  Turns out she hadn't been eating any breakfast since fairly early in the year, claiming she just wasn't hungry in the morning.  Closer discussion of what she ate for lunch revealed that though she always took lunch, she rarely ate more than a few bites of any of it.  She was not taking anything for their afternoon snack time anymore either, again because she said she just didn't want it.  No wonder the girl is a twig!  I had no idea she actually ate so little! (Again feeling like a crap mother!)

I wondered if the Concerta for her ADHD could be suppressing her appetite, and planned to ask her doctor about it if no other solutions were found with the nutritionist.

After talking with us the nutritionist didn't feel testing for celiac disease or other food allergies was necessary at the time, but coached me in ways to get her to consume as many calories as possible.  I got her Ensure Plus nutrition shakes to drink in the morning in place of breakfast, since she didn't mind drinking, but didn't want to eat anything solid in the morning.  The last few weeks of school she also took her lunch to the nurse's office to eat where there would be fewer distractions and she wouldn't be tempted to be so busy socializing that she'd forget to eat.  By the end of May she'd gained 3 lbs. and early July was up to 51.4 lbs.  The nutritionist was satisfied that she was gaining sufficiently with these more conscious dietary changes and didn't feel any further testing necessary. 

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 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.

Requesting IEP evaluation/504 plan

I was not at all familiar with the protocol for requesting and IEP (Individualized Education Plan) evaluation or 504 plan when Katie's therapist suggested it in December (2013).  I decided to wait until after the winter break and discussed it with a couple other mothers I knew whose kids receive special ed services.  The girls' step-mother,  (or Bonus Mom, as they call her) Mary had been through this process with her elder son and encouraged me to push for a full IEP evaluation, even if we didn't really think Katie would qualify, just to be sure it was all covered and nothing was missed.

When school resumed I called and spoke with the Student Services Coordinator at Katie's school and requested such an evaluation.  He immediately tried to put me off by saying that at their school they really didn't like to jump right into full-on Special Education assessments (required for the IEP) right away, because it involves hours of testing and evaluation by a multidisciplinary team of staff.  Instead, it was really their policy to start with a 504 plan and see if the issues could be addressed that way before resorting to a full-blown SpEd assessment.  He did not actually refuse to do it, but I was very strongly persuaded that it was the way they usually did things, especially for problems as "minor" as Katie's.  

So I agreed to start with the 504 plan, just to get things rolling.  I really didn't understand (and still really don't) the difference between the 504 and IEP anyway (except that IEP services are much more comprehensive).  He told me they were in the middle of working on plans for a couple other students and could then meet with me to talk about Katie's needs.

A meeting was held Jan 21st between myself, the services coordinator, Katie's two primary teachers, and several other district specialists like the school counselor, psychologist, nurse etc.  They asked me to describe the struggles Katie was having and what I would like them to help her with at school, consulting with the teachers as we went to see what their perspective was.  

I told them how it had actually all started with a transportation issue, which they had been told had been addressed, and why the change which had been made was still unacceptable.  They agreed that walking around the pool was a bit too much to ask, and assured me they could get something else in place right away.

As to what else I was concerned about, it was hard to put into words exactly.  I did mention Kate's utter lack of organization, and did request that someone check in with her in the morning and before she left for the day to see that she had what she needed to get homework done and turned it back in when she brought it back.  Described how she can become perfectionistic and get upset when things aren't the way she wants them, needing time to calm herself down.  In the end they had me sign a bunch of releases so they could get documentation from her therapist, doctor and Alexander Center, and told me we would meet again in about 2 weeks to discuss what they felt they could offer to help.

Bus Stop Change ??

In the meantime, just before Christmas Break they did finally change Katie's bus stop.  She was reassigned to a door connected to our own building, but equally inaccessible and impractical for someone like Katie.  The new location required her to go down our hall and take stairs to the first floor, passing through 3 heavy fire doors to reach a locked door to the pool area, where she had to walk around the edge of the pool to another fire door on the opposite side and go all the way down another hall, through 2 more heavy fire doors. 

This certainly did not seem like a safe alternative to me!  To begin with, Katie still, a year later, has great difficulty opening the heavy fire doors separating hallways.  Secondly, the maze of blank hallways and doors this required her to navigate would have had her lost in no time if she tried it on her own, and walking around the edge of the pool every morning and afternoon!??!  Seriously?  I walked it with her for the last week before Winter Break, and I guess it was better than scraping windows to drive her 1/2 a mile, but honestly was this really the best the district could do?

Cathching up again

Here I am again, incredibly behind in posting.  Sorry folks, bear with me, please.

When I last wrote, it was late fall and I was being held hostage by a homework meltdown.  Wish I could say that was the last of the year, but unfortunately things were only heating up at that time.


Regarding busing, I pressed the transport dept when the first snow flew about my request for a pick-up closer to our building, and was told any changes would have to wait til after winter break!  Meanwhile I saw several of the "short buses" picking kids up at almost every door of each of the bldgs in our complex (one right next to us!) and asked if she couldn't just ride that bus with that child.  Of course I was told no, those were only for Special Ed kids. 

At Kate’s next session I asked her therapist exactly what diagnosis she had in her system for Katie, thinking that if it was the only way to solve this transportation issue, maybe she could qualify for SpEd due to her diagnoses.  When I mentioned this to the therapist she encouraged me to request a full IEP evaluation for Kate so she could get help with some of the other things we’d been struggling with as well. 

Katie had been resistant to doing homework, often telling me she didn’t have any or forgetting to bring it home, so that it piled up and then felt too overwhelming to her to even start to tackle.  Homework that did get done wasn’t getting turned in. I’d find it a week later in a folder at the bottom of her bag.  She also wasn’t bringing home all the usual school notes that inevitably get sent home with students, but this being a new school, at first I just assumed they didn’t send much home since there was an online newsletter. Then suddenly she’d come home with 2+ months worth of parent letters, permission slips, and health notices.  So one thing her therapist told me I ought to be able to request was to have someone come meet Kate in the morning when she got to school and help see to it that homework got turned in to the right place and whatever else prepared for the day, and then also come to her before she left for the day to help her make sure she brought home all her homework and necessary materials.  She told me if Katie had an IEP or 504 plan there would be services available that weren’t otherwise.