Jesse's Mom Speaks Out
By Susan Sorger
My son Jesse just turned 13 and he is the picky
eater. I recognized his picky problem as a Sensory Integration Issue
years ago but the "experts" at the time disagreed with me and told me it
was just shtick. Mostly because the sensory stuff was just around food
smell, texture and taste.
I have recently found an OT who agreed that this is a sensory issue and
have started to work with her. She has also indicated that my very thin
has general low muscle tone and that is evidenced by all kinds of things
including that he pushes too hard with his pencil when writing in order
have control and his arm fatigues easily. He has poor fine motor
and will probably tie his shoelaces bunny ear style for the rest of his
life. This is relevant because she feels that the poor muscle tone also
extends to his tongue which, as a muscle, is responsible for discerning
food sensations in the mouth. We have been working on a series of
exercises to strengthen his tongue to lessen the gag reflex and to
increase the sensory information that can be gathered by the tongue.
Very slow process. We are also going to try "odor exposure" tests where
we place extracts like vanilla, cinnamon, almond and so on in little
containers and swab them with a cotton ball. Then the cotton ball is
taken close to the nostrils. We want to see how long it takes for him to
acclimate to the strong pleasant odors. We are working on making him
feel comfortable with strong odors and will eventually introduce more
cooked food odors.
What he is refusing to do is to do any of the blind taste test. Jesse is
also very visual and makes decisions on what he will like or not just by
look. We first wanted to do the blindfold testing using only food that
likes but he refuses to trust any of us so we can't even work our way to
part where we introduce new foods that we have described to him.
The OT is very expensive. $100 weekly. Going once a week is useless
unless we do daily follow up exercises and that has been difficult. We
found a "tutor" who works with an educational consultant. The
consultant (find the right school for your unusual child: Jesse is
brilliant but disorganized and scattered and doesn't do well in a school
where there are too many kids in the class and many of them with
problems. He is also a bit of a "geek" with computer and science
and we fear going to the very social local high school may not be a good
idea for him) So this educational consultant is very experienced in kids
like Jesse and many flavors of disorders, shtick, etc. She completely
understands the food thing as she runs in to it ALL THE TIME!
She found us a tutor who is working with Jesse twice a week for
keyboarding skills so that he can use a laptop in school instead of
writing. She is also addressing organization concepts. Most important,
She met with the OT and is working with Jesse on the tongue exercises,
food experiments, learning to pack his own lunches and so on. We no
longer have to pay the OT for the weekly 1 hour session. We pay just a
little more for the tutor to come twice a week for 1-1/2 hour sessions.
Jesse is more apt to work with and listen to a stranger than to me. The
educational specialist suggested that we make creative use of other
For instance there never seems to be any time to schedule the tongue
exercises. She said to do them in the car when we are driving somewhere.
Good use of down time.
Any way. I hope some of this rambling is of use. So far, although Jesse
is willing, we have not found one new food that he will eat.
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Jesse's OT has mentioned an exercise for the tongue to diminish the GAG
reflex. This is how it works. Take a teaspoon and press down on your
tongue in the front and use your tongue to push back against it. Fight
the downward pressure with your tongue. Count 5. Move the spoon further
in and repeat. Further again but not so far that it will cause gagging
and repeat. Now turn the spoon on it's side and push against the side of
the tongue and again, fight it with the tongue. Same with the other
side. Repeat this 3 times a day.
Now, why are you doing this? The OT noted that there was a marked
preference by Jesse to eat crunchy foods. She is working with another
who prefers only baby foods and although the nature of the sensitivity
different, the tongue problem is the same.
Here is her explanation: The function of the nervous system is to
and to DISCRIMINATE. In order to be able to discriminate in a socially
acceptable manner ( "Gee, this doesn't taste very good, I think I'll
get a napkin and get rid of it. OR, I'll swallow but I won't take
bite" the nervous system (read tongue in this instance) must be able to
gather the required tactile and taste information from the food. If the
tongue cannot gather this information, the nervous system immediately
goes into alert into a defensive mode and says "PROTECT" . (read gag and
spit. A physically weak tongue, which is a muscle, cannot function
properly to give the nervous system this information.
Now I couldn't understand this at all, so she gave me another physical
example. She provided me with a pen and asked me to pick it up using and
extremely limp-wristed barely there, kind of hold with the tips of the
fingers. She asked if it clearly registered on my brain as "pen" and I
to admit that it was hard to tell from the "feel" what it was. Then she
gave me a much heavier and thicker object that was long and narrow and
asked me to pick it up using the same limp wristed hold. Now it "felt"
like what it looked like. The item that had more "definition" registered
on a weak
neurological link, but the one with less, did not.
She explained that that is what is going on with Jesse. He requires a
crunchy French fry because it is only through these defined crunchy type
foods that his weak tongue can pick up the information it needs to know
what he is eating. Strengthening the tongue, increases the definition of
greater number of foods.
I never would have guessed that Jesse has a "weak tongue". I had read
about this sort of thing as a reason for a problem with feeding but I
imagining a person that had some sort of palsy and was visibly impaired
physically. Jesse was so utterly "normal". Except now I think back to
very long it took him to eat his meals as a toddler. He would sit at the
table for 45 minutes. Actually he lost interest and would want to leave
(eating that long is really boring) so we started turning on the TV just
keep him eating. When we pressed with the spoon on Jesse's tongue and he
insisted he was pushing back, I felt no resistance what so ever. When I
tried it on the OT, you could feel the resistance.
Other exercises for the tongue include using a huge wad of gum and
shaping it to blow bubbles, over and over again. Putting some peanut
butter on the hard upper palate and using the tongue to work it off. Or
placing a sticky candy or small marshmallow there and using the tongue
to work away at it until it has dissolved.
Next Exercise: This one causes pressure on the hard upper palate (just
before it goes up into the caverns of the mouth) and has 2 benefits. It
exercises the nervous system by placing a marked sensation where it has
not been accustomed to getting it and I causes a temporary numbing
effect so that new foods are not as shocking when introduced.
About 5 to 10 minutes before each meal, regardless of what is being
use the thumb of one hand to press firmly on that area of the palate
starting from one side and moving along the semi circle of the palate to
other side. Go back and forth and back then remove finger and swallow.
Repeat 3 times then eat something in about 5-10 minutes. If a new food
being introduced, bite and taste the food on the side of the tongue
is far less sensitive.
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I personally have been fighting the contention that this is in Jesse's
"head" as everyone has been trying to tell me. I've been trying to make
people see that this is physical. I don't want to diminish that by
admitting that I believe there is indeed a psychological component. It
is impossible to have so many bad experiences with food without having
some sort of psychological repercussions. I think that the fear of
having a gag reflex or of tasting something repugnant set's up a mind
set that prevents any trial of new foods. It's understandable but is a
cyclic problem. The physical problem feeds the psychological which feeds
the physical ad infinitum. I saw a TV documentary recently about a
program to help phobic people. The subjects were a group of people whose
fear of spiders reached phobic proportions. In one case a woman had a
single horrid experience as a child that created a lifelong phobia. It
was a 4 week intensive program that began with some sort of brain scan.
Certain dark areas in the brain were noted. Over the 4 weeks the
subjects were introducing to progressively stressful exposures. First
just touching a photo of a spider caused a phobic reaction. Once that
was mastered, touching video screens with moving spiders was required
until the subjects were ready to share space with tiny garden variety
The program ended with the touching of a de-poisoned tarantula. About
100% of the subjects were able to touch it after the 4 weeks and some
80% were able to hold it. The most interesting thing was that the brain
scans taken after the 4 weeks showed a marked difference in the brain.
Many of the dark areas had been eradicated. The moderator said something
to the effect that "a person's will, or decision to conquer his fears,
caused a physical change in the functioning of the brain".
I found this most encouraging. It seems to me that the negative
experiences of this group of picky eaters has definitely created a
phobic response overlaying the physical problem. I noted that in many
books on the subject, a multidisciplinary approach was suggested. I
asked the OT if perhaps Jesse would also need a behavior therapist. She
suggested we try and conquer as much of the physical end of the problem
as we could to begin with and then we have more to work with when and
if, we would need some behavior therapy.
It's an awfully long winded way to say that the only way to get over
this is to make up your mind that you really want to, and are willing to
be exposed to some intense discomfort to do so. The OT says that we
shouldn't expect that Jesse or anyone with SID will ever have a
sophisticated palette or even be a "normal" eater. However we can get
him a long way into adding new foods and more easily participating in a
greater number of social occasions.
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People with Autism, Aspergers Syndrome and Non Verbal Learning
Disorders often have SID to some varying degree. Somewhere in my
readings I picked up that it is about 60% of the time. There have been
some 20 genes identified as the ones responsible for the full blown
worst case scenario of Autism with every other attendant disorder on the
list including SID, ADD etc. While we are often told that these
disorders can be thought to be related to one another along a spectrum
from mild, such as a non specific learning disorder, up the spectrum to
ADD further along to Aspergers, then Autism and somewhere in there is
NVLD and Pervasive Developmental Disorder. But the truth is that it is
not an easily traced spectrum. It is more a cluster of traits and,
depending on which of the 20 genes are affected, you can get all sorts
of overlaps of traits with some belonging to the lower end of the
spectrum and some to the higher.
What the medical community has generally failed to recognize up to this
point is that there is no reason why only one of those genes can be
defective, namely the one for SID regarding food.
So, I would expect that there is every reason to believe that someone
who specializes in treating that aspect of Autism could help someone
the SID if they were capable of separating out the treatments. That
said, my son's OT works with all manner of neurological disorders,
them, Autism. These are the very professionals that you are asking after
Emily. The neurological disorder is the specialty of the OT and not the
psychiatrist. I think that Autism is attacked from a team approach with
many different specialists involved including the OT. Would "Picky
benefit from a "team" of specialists? I wager they would. Can we get
to treat same given the long waiting lists for Autism patients? Covered
some medical plan? It would be really nice, but I doubt it at this
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I have spent the last 11 years trying to
get a grip on how to help my son.
I have come across so many ignorant and arrogant professionals who have
led us down the wrong route and who have really been detrimental to
getting the understanding that my son needs. Add to that the legions of
parents and friends who think they know it all, all of them,
professionals and lay
person's alike, clucking over me telling me their definitive answer to
problem. All of them, all of them, all of them come up with one of the
following: you must force feed, you must punish, you must not
allow/enable, you must provide consequences. They all imply that somehow
it is my fault and I have been remiss as a parent and I have "spoiled"
None of them understand that this is a disorder. All of them think that
have played a part in allowing this to happen. It took me years to
research, understand and come to believe that this is a real physical
condition. I can't help it, but now whenever any medical type
looks down at me from their lofty position and states unequivocally that
is completely psychological and that I can change it through appropriate
discipline, I bristle and write them off as an uninformed dolt.
To have someone in this group suggest the very same thing, plays right
their hands. Those people don't need any more ammunition in their hands
to confirm what they believe.
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You, Susan, are amazing!
So insightful, but all too hard on yourself!!
This is not about you,
per se, but you as a PARENT, striving to find the most effective way
to handle the problem with and for Jesse....as well as for yourself
and your family because, guess what? These are FAMILY problems.
Eating dysfunctions have interpersonal ramifications, implicitly or
explicitly, a reality that simply cannot be avoided. In other words,
as a parent, you have to be involved in one way or another, like it
You are doing the best
you can do, which is all you can do (and I might mention, the entire
group is benefiting from what you do and say, big-time. Thank you
for being the generous and open person that you are.) What you
demonstrate here is an astute, sensitive, and flexible capacity to
assess a situation, yourself, and your son's needs, and the courage
to try out creative alternative solutions to enhance outcomes. That,
Susan, is problem-solving at its very best.
Here you have become a
positive role model not only for parenting a child with SID, but for
accommodating all the glitches and well-intentioned, though
less-than-successful efforts that are part of normal part of daily
living for us all, no matter who we are and how we eat...and you are
apologizing for it! Don't hesitate to speak to your son about what
you have learned about him, about yourself, and about this dynamic
process of effective problem-solving if and when the occasion
presents itself. It represents such important learning.
As human beings, no
matter what our eating lifestyle, having to confront and deal with
problems large and small is a regular part of our daily diet...what
separates the men from the boys is HOW WE USE OURSELVES IN
DISCOVERING THE MOST EFFECTIVE SOLUTIONS. The more available and
open you can be to new ideas and the exploration of new approaches,
the better you will be at fixing what needs repair. And that's
the bottom line.....not being "right." Mistakes are life's way of
offering us the capacity to seek a better way.
I tip my hat to you.