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 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!

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.