Eating at School

It's been a while, but we are still here, still dealing with ARFID.  As Tayden grows and matures, he handles things different, but the issues are still there.  One of those has been eating at school.

Tayden was attending a charter school as his food problems started to surface.  During a routine parent teacher conference we were discussing his work.  He was a good student and always did well and worked hard. But she did mention that he had one assignment that he just refused to do.  It was a graph and he loved math.  He kept saying he would just do it at home.  His teacher was so confused with why he wouldn't complete the assignment at school.  She offered many times to help him with it and explain it to him, but he insisted on doing it at home.  Finally I asked what he was supposed to graph.  His group was supposed to each carve a small pumpkin, count the seeds, and graph it.  I chuckled a bit as it was immediately obvious to me that it wasn't that he didn't understand the worksheet, he refused to touch the pumpkin!  This gave me the opportunity to explain to his teacher what he was dealing with.  I didn't have a name for it at the time, but luckily she was understanding and willing to work with him.  It also answered some other questions she had.  There was another time the students had to do a project where they counted the different items in a handful of trail mix and graph it as well.  As she was cleaning up for the day she noticed there was one table that had a small pile of raisins on it.  She was so confused as to why a kid would clean up his place, but leave the raisins.  Sure enough, it was Tayden spot.  He was okay to touch, not eat, mind you, but touch the peanuts, cereal, and M&M's, but wouldn't touch the raisins.  

While at the charter school, the school ate lunch in the classrooms.  His lunch consisted of a bag of goldfish, 5 saltine crackers, bag of pretzels, bag of potato chips.  But after a couple of years in that school, we felt it was time to move back into the public schools based on some differences of opinion.  We were looking for more structure and opportunities for our children that the charter school couldn't provide.  This move had some challenges but for the most part, Tayden did well.  There was just one area that really stood out as a struggle.  Lunch.  Now, instead of eating in the classroom, he had to eat in the cafeteria.  From the first day, he was so upset.  His lunch hour was not the first lunch hour of the day and so the cafeteria was already a mess when he got there.  Not knowing this, he couldn't believe no one had cleaned up after the day before.  He thought the janitors should be fired! He would come home so upset that the table had crumbs all over it and the floor was sticky.  It was almost too much to bear.  Not to mention that now hot lunch was an option.  Of course not for Tayden, but it meant that weird smells were coming out of the kitchen.  I kept an open mind and continued to talk to him about it and found that he was willing to tolerate the cafeteria.  I asked him how he was able to sit with friends who were eating "gross" foods and he said he would just do his best to sit as far away as he could, about 6" was the most he could get in a crowded cafeteria.

He never told anyone about his fear of food because as kids go, they would tease him and put food in his face to see his reaction.  Fruit snacks have been and will always be his nemesis.  So he mostly dealt with this in silence.  Some days were tougher than others.  As he got older, he would do his best to find a table in the corner, hoping he could eat alone.  Sometimes he would try to eat at the nut free table because there were fewer kids and so it was quieter.  In one of his schools, he would sit on the steps to the stage, but he usually got told to go back to a table.  He stood for about 3 months at one school because he couldn't handle sitting on the bench that had food on it.  One day I picked him up to see him in tears.  Apparently the teacher over lunch that day was angry about how loud and out of control the lunch had gotten that day, so she said they would assign seating from now on and the kids would have to sit in alphabetical order.  Tayden knew the two kids that would be on either side and he just knew he couldn't stand the idea of sitting next to them.  They were loud and obnoxious and ate gross food.  He begged for me to pick him up everyday for lunch.  I arranged to pick him up the next day and we ate pizza in the car in the parking lot until I could sort it out.  I was finally able to get a hold of the principal.  She said she was just mad and it was only a threat.  She wasn't really planning on doing a seating chart.  Relieved, I told Tayden.  He was so angry.  He couldn't believe she would just make an empty threat that caused him so much anxiety.  

As he got into middle school he made a discovery.  One day he forgot to turn in his homework.  His punishment... not getting to go to lunch!  He found out that the kids who got in trouble had to eat lunch in the classroom.  This was a major dilemma for Tayden.  He was a good student that thrived on getting good grades and NOT getting in trouble.  Lucky "bad" kids!  They got to eat alone!!  He contemplated that for a day or so but couldn't bring himself to act out.  But every time he would find a quiet, out of the way, place to eat, a teacher would make him go sit at the table again.  Another trick that he learned was there weren't enough seats at the tables for all the kids to sit.  So if you got there late, you'd HAVE to eat at the benches on the sides of the cafeteria.  Ah ha!  He would hang back just long enough for the seats to be taken.  This worked until they actually did decide to make seating assignments.  Luckily, the kids got to choose who they wanted to sit with.  But then they always had to sit there.  He chose a friend he could mostly trust so it wasn't too bad, but over time it just got harder as they were eating foods with strong smells.  

Finally, one day I was in the office for something else and saw the assistant principal.  I mentioned that my son had an eating disorder (by now I was aware of ARFID) and wondered if there was a place he could eat lunch that wasn't the cafeteria.  She was very kind and mentioned that they had a homework hall where kids could go get work done during lunch and eat there.  At first Tayden wasn't sure about this option because he knew that homework hall was also for the slacker kids who weren't always well behaved.  But after a fews days of thinking this over, he tried it.  He felt a little weird, but he came home saying that for the first time in months he was able to finish is lunch (still goldfish, crackers, pretzels, chips).  I hadn't known that he wasn't eating because the smells and environment was making him sick to his stomach and he would finish his lunch on his way home from school.  

Now that is his routine.  He eats lunch at a desk by himself in homework hall.  But he's at peace.

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.