Sensory Processing Disorder

Definition of SPD (spdstar.org)

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.

Sensory Processing Disorder or SPD (originally called Sensory Integration Dysfunction) is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses.  A more formal definition is: SPD is a neurophysiologic condition in which sensory input either from the environment or from one’s body is poorly detected, modulated, or interpreted and/or to which atypical responses are observed. Pioneering occupational therapist, psychologist, and neuroscientist A. Jean Ayres, Ph.D., likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.

I first heard about sensory processing disorder (SPD) from the food therapist we had taken my soon to.  My son was tested and although she didn't give us a formal diagnosis, he was high on that spectrum.  Once I learned about SPD, I clung to that.  Something to grasp.  Something to explain his strange behaviors.  He wasn't overly difficult, but he had really tough moments.  And they were typically over things that didn't make sense to me.  He had the occasionally melt down about the clothes he was wearing.  I had to cut the tags out of all his shirts.  (Which is a problem for me because with five kids, I kept clothes as hand-me-downs. Now I'm stuck with a bunch of clothes and I don't know the size!)  He hated his jeans.  They just weren't right.  Either too big and baggy or too tight.  Once he found a pair that he was comfortable with, he lived in them, like everyday.  He also had trouble getting rid of things.  He had an emotional attachment to his stuff.  So when his pants got too short, it was a major battle to tell him he couldn't wear them anymore.  It didn't matter that they were at his shins.  He couldn't give them up.  I had to actually hide them until he forgot about them.  I cleaned out his room with him gone.  One time I made the mistake of leaving the trash bag where he could see it.  Big mistake.  He happened to see something of his on top and went through the whole bag fishing out his things.

One of the earliest signs I can remember was at nursery at church.  He was about 2 and when I went to pick him up the teachers told me he wouldn't eat his snack.  What was it?  Rice Krispy treats. What?  Who doesn't like rice krispy treats?  Although he actually did like them, he picked it up and set it right down and wanted to wash his hands.  Too sticky.  He didn't like how it felt in his hands.

Hair cuts.  This is a battle.  I always cut my boys hair and he hates it.  When he was little, I was scared to take him to a salon though for the fear of the tantrum that was sure to come. He wouldn't sit still. The hair was falling all over him and it was like he wanted to crawl out of his skin.  To make matters worse, he didn't like the feel of the cape either.  Or how it felt for the hair to poke him through his shirt. So he insisted on no shirt or cape. I would try and give him a sucker to distract and it would case more problem because if I piece of hair fell on his sucker, well, let's just say, it got real ugly, real fast. One day I had had enough.  I put him in a head lock, shaved his head while he screamed in about 5 minutes, and threw him in a tub. After that, he always got a buzz cut. He still hated it, but it was much faster.  But I tried everything to make it an easier process.  Once he laid across the bathroom counter with his head over the sink so the hair would fall straight into the sink.  That kind of worked but it was uncomfortable and hurt his neck.  Sometime he held the hose end of the vacuum and was allowed to catch the hair as it fell.  Finally we found the perfect set of clippers.  It wasn't the Flowbee but the idea was the same.  The clippers had a little compartment that sucked up the falling hairs.  We still use it today.  As I'm writing this, he is sitting across from me, in dire need of a haircut and I dread it.  He's older and wants sometime more sophisticated than a buzz cut (mostly because the kids at school rub his head after a fresh cut).  He doesn't throw tantrums anymore, but he fights it.

When he was 4, I signed him up for a library story time.  He didn't go to preschool so this was a great opportunity to be around other kids and learn to interact.  They did singing, stories, and crafts.  He didn't really complain too much about going, but once we were there, he would have a hard time participating.  For one of the songs everyone got to pick out a set of bells.  Seems like fun!  As soon as it got to the part where everyone got to ring their bells, he immediately covered his ears and got very upset with the noise.  Crafts were tough too.  One time they did finger painting.  I believe we opted out.

We moved to the charter school for first grade.  The best part was the uniform. The slacks were comfortable. No more fights about what to wear! He probably wore the same pants for four days in a row, I didn't know and I didn't care.  As long as they looked clean, we were good to go.

Over the years we have learned to understand more about this and luckily were are in a good place. He knows what he can handle and even seems to be more tolerant of things.

Our Story

First, some history.  I have struggled with my son's eating habits for over 7 years now.  He is 10.  As a baby, he wasn't bad, but looking back some things are now making sense.  I have 5 children and I've dealt with picky eaters.  In fact, I was a picky eater.  I thought that meant I was the best person to understand a picky child.  So when my children didn't like something, I understood and never forced eating.  Tayden was no different.  With all my children I started with the same food.  Rice cereal.  Then I added rice cereal with bananas.  From the first bite he hated it.  Nothing I could do would change that.  It didn't matter the consistency, whether I mixed it with water or breast milk, or the number of times he tried, he hated banana rice cereal.

That was our beginning, even though I didn't know it at the time.  Like I said, I had picky eaters, no big deal, move on to the next food.  It really wasn't until he was about 3 or 4 that I really started to wonder.  While my other picky eaters slowly got better and tried new things, he got worse.  One at a time, he was getting rid of foods he previously liked.  By the time I decided to seek help, he was down to about 10 foods.  He has never eaten fruit.  Really never even tried it.  If its a fruit, he won't eat it.  End of story.

My first attempt was with an occupational therapist.  I liked her.  She was kind and understanding.  She validated me.  It was the first time I talked to someone that didn't think I was just a enabling parent that needed to get serious about making him eat.  She tested him and found that he was borderline SPD (Sensory Processing Disorder).  Ahhh, finally, something to call it.  Not that I wanted a label, but it meant that I wasn't crazy.  He really did have something he was dealing with and it wasn't bad behavior.  He was not an overly difficult child, but he had his moments.  More about SPD in another post.  He was in school at this point, and the teachers didn't see any problems.  They actually wondered why I was taking him to the OT, "he's fine".  Not just fine even, he was very smart and doing quite well.

Back to the food therapist.  She had me bring different foods to the next appointment.  Something he liked, something he used to like but didn't anymore, and something he never liked.  I took french bread (liked), ham (use to like), and an apple (never liked).  She set up an obstacle course and placed different foods at each station.  The point was to get him playing so the focus was off of the food.  He'd have to run to the food and interact with it in some way that was comfortable for him.  So he ate the bread, no problem.  But with the ham she wanted him to touch or lick it.  I believe he did.  With the apple, she just wanted him to touch it.  Surprisingly he did, but wanted to wash his hands immediately.

I took him one more time and she played a game with him.  He was on a swing and when he swung forward she had an apple in her hand and each time he approached her, she tried to bump up to the next level of interaction.

The levels are: (as I remember them)
1) see
2) smell
3) touch
4) kiss
5) lick
6) put on tongue and spit out
7) hold on tongue and close mouth, then spit out
8) finally chew and swallow

I was actually surprised when he kissed it.  He was very uncomfortable and looked at me with a "get me out of here look" but did it and then quickly wiped his mouth with his sleeve.  When he licked it he gagged and she stopped the game.  Explaining to us that a gagging reaction is when you stop.  So I left feeling like we had accomplished something.  I was told that he wasn't a bad kid and I shouldn't be pushing him to eat "my" food.  No more sending him to bed without dinner or withholding dessert because he didn't eat everything on his plate.  She gave me some tips on what to do at home.  It included eating with him alone, away from the family, and making it a play time.  Take the focus off the food.  As a side note, he did more for her than me.  I couldn't get him to even touch the apple. But I still gave it a shot.  For one meal, I made rice.  Away from the family, I had set up some legos.  He had to build a tower, but after each block, he had a take a bite.  For him, a bite was one grain of rice. After about 10 "bites" he was done.  I tried to see how this was going to work.  I had 4 other children. Dinner was hectic already.  Sitting down as a family was important to me.  Now I'm being told to leave the family and sit in another room to play food games.  It seemed impossible.  As for therapy, three sessions and he has was licking an apple.  At this rate, I'd be taking him to therapy for the rest of his life.  Even if he ever ate the apple, then what?  Another food?  It was going to be torture.  He was "mostly normal".  We got along at home, life was okay.  His weight and height were good.  He was doing well in school.  He did eat.  Just because it was the same thing everything night, he was eating.  Did I really want to put him through that every week, just so he could tolerate an apple, that I knew deep down, he would still probably never like.  So the therapy ended but the learning continued.  The take away was that this was real and I wasn't going to fight with him anymore.  We reclaimed a family dinner.  No more tears, no more punishments.  I can't say I was perfect at it.  I had my moments.  I had my fears.  I worried about the future.  What did it look like for him?  This was about five years ago.  We've come a long way.

What is ARFID

What is ARFID?

The DSM-V provides the following diagnostic criteria for ARFID:

A. An eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:

1.  Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
2.  Significant nutritional deficiency.
3.  Dependence on enteral feeding or oral nutritional supplements.
4.  Marked interference with psychosocial functioning.

B. The disturbance is not better explained by lack of available food or by an associated culturally sanctioned practice.

C. The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.

D. The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.