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 started to hear Katie making little "hm" noises 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.

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.

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.

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.