Sunday, November 23, 2014

Uh oh, Here We Go...

Things went pretty smoothly for the first few weeks of school.

I suffered a personal setback when I was laid off from my job and suddenly had to face the pressure of looking for another one again.  The very day I was told, I got a call from Ms Margot, just wanting to tell me how much she was enjoying working with Katie and that she was a very sweet little girl.  She also said, "I just wanted to tell you, Katie is very proud of the work you do, working with homeless people.  She told us all about how you help people who've never even had their own bed before."  I broke down crying then, telling her I'd just lost the job Katie was so proud of!  

By the end of Sept. Kate started having some conflicts with some classmates and a couple days in a row she came out to the car after school with her backpack held up covering her face like a shield because she didn't want people to see she was crying.  

When I talked to her the first day, she told me another girl got mad at her for "just being herself".  I asked what just being herself meant, and Katie did admit that she was being kinda goofy (she'd announced that she'd just farted). A girl at her table, Takyra, told Katie she was annoying (BIG trigger word for Kate!!) and went and told the teacher on her.  Though the teacher said nothing to her about it, Katie felt herself to be "in trouble" over it and she started to cry (she does any time an adult is brought into things).  She said she wished Takyra would have just asked her to stop instead of going to tell the teacher right away.  

The next day she came out to the car crying again.  This time she'd wanted to read a book Takyra had, and had asked Takyra to let her have it when she finished.  Instead Takyra gave it to someone else.  Katie confronted her about it, reminding her that she'd asked to have it next and Takyra told her she didn't need to cry over every little thing and to stop being such a baby (another major trigger word!).  Kate says she wasn't even crying at first when she was confronting her, it was only "after she said those things" that she'd started to cry, so it wasn't even fair, coz she wasn't even crying!  "Ugh, Takyra is so mean!!"

New Year, New School, New Start

When I first told Katie I was transferring her to another school, she protested for a few minutes, but didn't put up much of a fuss once I explained that this other school would have better ways to help her with all the things that frustrated her last year.

It wasn't long before this theory was tested.  Tears on the second day.  The teacher brought out a math assessment type test that was just meant to see how far they could get in one minute.  Katie got upset and panicked, (she hates timed tests) and was promptly taken to see the school counselor in order to calm down.  Ms Margot is a very nice lady who Katie was happy to meet, and this saved her the embarrassment of having her whole class witness her meltdown.  

From that moment on, Ms Margot began popping in to check on Kate several times a day.  They developed a thumbs-up/thumbs-down system for Katie to silently let Margot know how she's doing without drawing attention.  Kate's teacher, Mrs Phillips, responded immediately by allowing Katie to do the tests un-timed and in a separate setting from then on so as not to panic her again.  

I don't remember if it was Ms Margot or Mrs Phillips, but one of them called me that very day to tell me what had happened, what they'd done to intervene, and their plans for future incidents.  I was so impressed!  Again, the relief was so incredible.  The fact that they immediately went into action and didn't wait for it to become a pattern was so reassuring. So hopeful!

Though Mr P had encouraged me to write that letter requesting the Special Ed evaluation right away at the beginning of the year, that wasn't quite practical.  In order to do the evaluation they really needed to be able to observe her and gather some baseline data before they could launch into full eval.  So it was put on hold for a time.

Hayes does have a grant funded program called ADSIS (Alternative Delivery of Specialized Instructional Services) for kids who don't qualify, or have yet to be assessed, for SpEd services.  It provides additional academic or behavioral support for struggling kids as needed.  Mr Cooper is the Behavioral Intervention Specialist in charge of that program, and while we wait a bit to go forward with the eval, Kate can access the ADSIS services.  If Ms Margot is not available at a time Kate needs some support, she can go to Mr Cooper's room for a break.  

Further into the year they built into her day two scheduled "sensory" breaks in the morning and afternoon, when she goes to his office for a 10 min break.  My intention when suggesting this was that she be given time and space to do some heavy work to help calm and reset her system, but at first she told me she was just going to his room and playing games on a tablet.  I have since requested that he have her do something physical instead to get the full benefit if the break. 

Misunderstanding SPD Kids

One thing I can say as a parent of a sensational kid is that it's easy to incur the judgement of other parents.  Looking at some of the behaviors of some of our kids, some people just see brats.  In Miller's example, LaTanya's teacher Miss Sorensen "doesn't say so, but she thinks the real problem with the girl is that her parents aren't strict enough and fail to make LaTanya do what she should".

I know for a fact that Katie's father and his wife have thought this of me many times over the years.  Much of the time when Katie is at their house for the weekend she controls a lot of her behavior out of intimidation.  She can hold it together for 48 hours if she isn't pressed too hard, but at home, where she feels safe, all that pent up "stuff" comes pouring out and we have some tough Sunday nights sometimes.  Her dad thinks I baby Katie and let her get away with too much.  I know it can look that way from the outside.  

The problem is that this holds a child with a disability (man, it's still not easy to say that about my own child) to the expectations of a typically developing child, and it's just not the same.  They aren't playing with the same equipment.  "Humans typically use reason to override reflexive behavior- thinking through situations in order to avoid getting to the 'fight/flight' mode unnecessarily.  The problem for (Katie) is that her 'fight/flight' response occurs so fast she doesn't have time to cancel it out with reason.  As a result, she (reacts) to situations that aren't really dangerous". (Miller, Sensational Kids)

When someone calls a typically developing kid a name, that kid can stop and think "Oh that's just Mikey- he's always causing trouble" and brush it off, but, when someone calls Katie a name, she immediately reacts in a way that is beyond what is expected in the situation, because she doesn't have time to apply reason the way we'd expect someone her age to.  So she looks like a brat.  Her behavior seems babyish.  She looks like a spaz, a freak, a weirdo.  She doesn't want to respond this way, it's just the way she's wired!

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....

Reviewing Katie's Sensory Issues

So, as I read through the chapter on the day in the life of a sensory over-responsive kid (LaTanya) in Lucy Jane Miller's excellent book, Sensational Kids, I recalled/learned/summarized these facts/observations about Katie:

Specifically, the type of problem Kate most struggles with is Sensory Modulation Disorder (SMD), which "makes it hard for her to match the intensity of her responses to the intensity of the sensations she feel".  Her system "cannot filter sensations in a way that would allow her to come up with an appropriate response" so when she is "alerted" to a sensation, her brain goes immediately to fight/flight/freeze mode.

Miller writes, "Parents of children with sensory over-responsivity tell me that they feel they're constantly tiptoeing through a minefield- always braced for the next event that will trigger a crisis", and that is precisely my experience.  

Also, "A typically developing child gets a sensory message such as the big bang of a slamming door, figures out the cause, and lets it go.  In children with sensory problems, this ability to let go of past messages sometimes appears to be impaired, leading to a 'backlog' of sensation that accumulates until it overwhelms the  child's coping skills" and "It is believed that the cumulative effect of undisposed sensory messages is what causes children with SPD to eventually fall apart over triggering events that are minor".   What if the reason Kate loses it when another kid calls her a name is a whole morning's worth of sensory alerts she hasn't been able to let go of?  

Miller goes on to describe how "LaTanya" is alerted by the overwhelming fumes of the school bus, the typical noisiness of an elementary school bus, and the inadvertent touching and jostling by other kids that happens on the bus.  Not to mention the sensation of the motion of the bus and its frequent stops and starts, and unexpected, loud traffic noises outside, such as sirens and honking horns.  Little wonder if she prefers to sit in the front seat to minimize some of these, and have visual cues to warn her of upcoming sensations. But sadly, in the example, the other kids won't always let her sit where she's most comfortable, and she is often reduced to tears.  "If LaTanya needed a wheelchair or had another physical limitation that made it hard for her to function on the bus, accommodations like an assigned seat would have been made for her long ago. However, because her handicap is invisible, accommodations are made on a spot basis and only after she falls apart, which just confirms everyone's opinion that this is a kid with big problems."  (my emphasis)

What if Katie is experiencing these same things, and arriving at school already so overstimulated that her system can't calm down enough to focus on the tasks at hand?  How much of what looks like ADHD behavior is actually her inability to take anything more in or process the information in the right part of the brain because she is so consumed with sensory overload?

Self-Regulation Stragtegies for Children Autism, ADHD, and Sensory Disorders

When I came across registration information for the above titled seminar, I knew immediately that I had to attend!  This would be a whole day of discussion with a true expert and could help me personally as well as with info for my thesis paper.

It was scheduled for mid-July, so in early July I got out a bunch of my SPD related books and started rereading them so I would have all the info fresh in my mind.  As I did so I began to seriously question myself as a mother, wondering if I had discounted sensory issues Katie might still be experiencing that just weren't as obvious as they used to be.  

In her book, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD), leading researcher Lucy Jane Miller describes a day in the life of a sensory over-responsive child.  As I read through this, I found myself repeatedly thinking, "My god, what if Katie is experiencing that too, and just doesn't know how to say so?"  When she was very young it was easy to see when Kate's senses were overloaded because she over-reacted violently, screaming and panicking.  What if, now that she's older, she's still being triggered by tons of things in the environment, but internalizes it instead of acting out the way she used to?  I had just kind of assumed that a lot of these things weren't a problem for her anymore, but what if they were?  What if these were the underlying roots of her struggles at school?  I felt like an idiot for having dismissed it all, and began looking at her in a whole new light as I reread my books and attended the conference.

The conference was very good, by the way.  Sponsored by Pesi, it featured Teresa Garland, MOT, OTR speaking to and with us about the techniques laid out in her new book, Self-Regulation Interventions and Strategies: Keeping the Body, Mind & Emotions on Task in Children with Autism, ADHD or Sensory Disorders.  This is an excellent resource for parents and others with lots of simple practical ideas.

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 describingSomething 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!