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.

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. 

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.