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....

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.

Insurance Frustration

Got a letter from the OT clinic today saying they received a denial from the insurance company for more OT services for Katie.  SPD does not have the same sort of recognition as other issues, so all the insurance looks at is the physical issues (delay in motor skill development), and Katie did too well to meet their standards for needing care.  Ugh.  Now to find somewhere else to get some help...

Re-Evaluating

Took Katie back to the Katie Lady yesterday to be re-evaluated to be covered for some more OT.  Her first round of OT was summer of 2010 and discharged when she started Kindergarten.  She has done really well for about a year, but now in the last couple months we've been having a lot more of the old-style meltdowns again, so I wanted to see if more OT could help at all.  The problem is that since SPD isn't quite considered a medical condition, OT has to be submitted/billed as fine or gross motor delay, rather than the sensory problems.  Yesterday Katie performed a lot better on the gross motor tests than Katie Lady had expected (guess she's made a lot of progress in the meantime!), so she is not sure if her evaluation will be considered enough to qualify for the services.  Now we wait and hope.

I think it's also time for me to look for a psychologist for her to see as well.  Anyone have any recommendations of someone familiar with SPD?  It's so hard to know just which symptoms/behaviors are specifically caused by sensory issues and which are issues of the control that she feels she needs because of the instability of her experience of the world because of the sensory issues.  Katie Lady suggested that maybe some of the behaviors are now learned responses that began when she had no better tools of expression, and continue now, even though they are out of proportion, because she hasn't learned alternative ways to express herself.  So some sort of behavioral therapy might be the thing to give her skills to regulate her emotions.

Whoa! Flashback

Had an episode this afternoon that felt like we were right back to where we were two years ago.  Katie came home from school and immediately demanded that I put on a particular DVD.  The show I was watching was not quite over, so I told her it would be her turn in 10 minutes.  She was not happy with that answer and began fussing and yelling at me, so she was escorted to her room (not very gently I'm afraid, I admit I got mad in a hurry).  She continued to scream and carry on while I watched the remainder of my show.  I wanted to just leave her to work it out and settle herself down, but I could hear things crashing and being thrown, so I went in to try to talk to her and keep her from doing any actual damage. 

I went in and sat down without saying anything to her.  She glowered at me and made a show of tearing up a piece of paper and throwing the tiny bits as far as she could, then picked up some toys and started throwing them around.  OT taught us that deep pressure touch and joint compressions can help to calm her body down and reset the switch, so to speak, on her level of arousal.  I told Katie it was not ok to throw things in her room, that she needed to control her body, and that I would help her if she was unable to do it on her own.  When she chose to continue throwing things and yelling at me, I took her into my lap and held her in sort of a bear hug to provide some of that calming pressure. 

She cried and threatened to do every naughty thing she could think of, "I am never going to settle down!"  "I am going to break all my crayons in little pieces all over the room!"  "I am never brushing my teeth again!" etc, etc. and I just held her silently.  I told her I would talk to her when she was under control, and then just waited, all the time wondering if I was doing the right thing.

This hug was meant to provide that deep pressure and joint compression, but I know there have also been times and places when it can be argued that a restraining hold on a child can be abusive.  That certainly wasn't my intention, I just really wanted to calm her overwrought system. There are autism spectrum kids who are rolled up in mats, or pressed with large pillows as part of their OT, and Temple Grandin's squeeze machine was created for this very purpose, so I thought this should be ok.

I don't even remember how she eventually wound down.  I tried to get her to try some deep breathing with me, but it only made her mad and she says she can't do it when I'm trying to show her how, that I should leave the room and let her do it by herself.  The storm was calmed enough by then that I agreed to do that.  The whole thing had lasted half an hour. 

I left the room exhausted and discouraged that we were back to having those kind of melt downs again.  I had thought we were doing better.  Disappointed with the way I'd handled the whole thing, feeling like I should be able to manage this better by now, that I should have been able to calm it down faster. I still have so much to learn.

Occupational Therapy Evaluation

I don't remember what finally made me pick up the phone and make the initial appointment for the OT evaluation, but it wasn't automatic, I think I still didn't understand what difference the therapy would make.  But eventually we got in to a rehab clinic in Maple Grove and met our therapist, whose name also happened to be Katie, and was therefore dubbed  "the Katie-lady". This initial evaluation was in January 2010.

Regarding Kate's behavior during initial evaluation the therapist's reports states "Short attention span.  Constant movement, difficulty to engage in structured activities.  Patient needed movement breaks to sustain attention to tasks."

Regarding motor skills, the report noted that Katie "used compensatory movements to maintain balance" on one foot at a time, indicating "likely poor core/ upper body strength" and that her manual dexterity tested below average. "She is lacking both strength and coordination in her hands and fingers which is limiting her independence with dressing tasks." 

Regarding visual-motor integration, Kate's visual perception tested in only the 6th percentile, and motor control only in the 19th, indicating "Katie demonstrates significant delay in fine motor integration skills.  She is lacking in visual perception as well as motor coordination.  She also appears to have weak hands which would limit her coordination skills."  It was noted that she used a "thumb-wrap" grasp for writing, which "offers more stability and is often used by children with weak hand muscles."

The Sensory Profile questionnaire I filled out indicated a definite difference in Kate's Auditory, Touch and Vestibular processing, as well as in her Emotional/Social responses, the Behavioral outcomes of sensory processing, Emotional Reactivity and Sensory Sensitivity, with most of her scores in these areas only half of the average.  The report states, "These sensory processing issues also affect her ability to get along and play with peers as she has the need to always be in control of her environment so as to limit unexpected noise and touch.  These issues also affect her ability to attend, learn and improve her fine motor skills."

Based on this evaluation, treatment goals were set as follows: 

-Katie would engage in upper extremity strength activities 3 minutes without fatigue

- would demonstrate appropriate tripod grasp on pencil without adaptive equipment

- would demonstrate age appropriate motor control by completing a certain type of maze

- would be able to attend to therapist directed activity at the table for 5 minutes

- would be able to follow directions to complete a 3 step obstacle course, after demonstration

I realize a lot of this specific information may not mean much to many of you readers, but I included it for those of you like me who are curious about such things, for any professionals who may understand such details, and for any parents considering such an evaluation to see one example of what results this type of evaluation will provide.

Finally, a clue!

I started graduate school in Spring 2008 in a Master's program for Clinical Counseling, working toward licensure as a Marriage and Family Therapist.

In January 2009 I was taking a course on child development in which we had a guest speaker come and talk to us about something called Sensory Processing Disorder.  She was an occupational therapist, and worked with children struggling with these issues.  As I listened to her presentation I became very excited.  This sounded like Katie!  Could this be the answer I'd been looking for?  I had to know more.

I purchased and read The Out-Of-Sync Child by Carol Kranowitz (highly recommended!) and came to realize that both of my girls had sensory issues, though Melanie's were much more mild, and I myself had these issues as well, and had never known it.  I had always been "picky" about certain things, but had never understood there could be a reason.