A Parent Discusses

A Parent Discusses

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A Parent Discusses Self-Stimulation
Excerpts from a letter by Leslie Fansler, a parent
from Texas.

Originally published in the P. S. NEWS!!!
This reprint is from the National Family Association for Deaf-Blind Newsletter,
Volume 1, Number 3.

Whenever I try to talk to a professional about
Preston's self-stimming, it's like we do not speak the same language or have
the same concept of self-stimming. Their concept of self-stimming and mine are
rather different. They constantly tell us to stop that stimming. It is always
on our IEP goals.
I agree with them to some degree. I do not like
Preston to stim in public. I cannot live with it, and I try to control it. We
have developed cues for Preston to use when we are in public. At first, our
cue was verbal. As he and our other son, Chance, grew a little older, the verbal
cue was not as appropriate. So we evolved. Now we use tactile cues. We stroke
Preston's hair and even hold his head still, just for a second, to remind him.
We still use the verbal cue if the tactile doesn't seem to work. I realize that
stimming in public is a form of communication for Preston. He feels uncomfortable
or is unsure what is expected of him, so I make an extra effort to help him
feel more relaxed. However, stimming at home is a different story. Every night
(the ones when Preston does go to sleep), he stims himself to sleep. I do not
tell the professionals that! I could not stop him even if I tried. I really
believe he needs the free-stimming time to unwind.
When Preston was much younger, he developed
a unique form of stimming. Every time he changed his position, such as from
a crawling position to a sitting position or when he pulled up from the couch,
he would rock the upper half of his body back and forth several times. After
this rocking he would change positions again or move forward. When he started
to crawl he also rocked back and forth, then moved forward again. All the professionals
said, Rocking is a blindism, stop that stimming. I tried. I could not redirect
it even if I spent the entire day one-on-one with him. Finally, one day I went
to see Dr. Ed Hammer.
Dr. Hammer, who is with Texas Tech Health Sciences
Center in Amarillo, has many years of experience working with children and adults
who have deaf-blindness. Whenever I become so freaked out about Preston's self-stim
behaviors, I call on him. He always invites Preston and me over as soon as he
can schedule us.
Dr. Hammer explained to me that Preston's self-stimming
was his way of measuring distance in space. He wanted to make sure he had a
clear area to move in before he took off. I'm not sure if I believed him at
the time or if it was just great to hear someone say, Hey, you can't redirect
it, it's developmentally-appropriate for Preston right now. He will extinguish
it himself when he doesn't need it anymore. But he was right. It did extinguish
itself and it did serve a purpose for Preston right then.
Later, Preston began a weird, flicking behavior
with things he would stick in his mouth, like straws or strings. He flicked
a lot! He would get down and pull strings out of the carpet to flick. The professionals
said we must stop that weird stimming. I tried, but I couldn't. I went to see
Dr. Hammer again.
Dr. Hammer felt that Preston must have a need
for oral stimulation. So, we came up with a free-flicking time. Preston's favorite
flicker was a sucker, like you always get at the bank. Every day, he has a free
flicking time with a sucker. This stim has not extinguished itself; I am sure
it serves a purpose for Preston. But designating a free-flicking time has still
helped. It does help me to communicate with Preston about his flicking. I remind
him, and myself, when we get so tired of redirecting his flicking, that there
will be a period of time today that I can just blow off the redirecting and
he can flick. His free-flicking time now is when he lies down at night. He can
flick to his hearts content and I can forget about stopping him for a while.
The point I want to make here is that the professionals
need to take a new look at stimming in a child who is dual sensory impaired.
I realize many of these behaviors are socially inappropriate. However, this
is a kid who is starving for sensory information. Many of the so-called stereotypical
movements and stims may be neurological systems making tremendous efforts to
get information about the environment around them. Stims can serve other purposes
as Dr. Hammer patiently explained to me. As I said, I allow Preston to flick
at night. I even give him a straw to flick if he is having a hard time going
to sleep. However, I had noticed some new stims going on and I wanted to talk
to Dr. Hammer about them.
We began toilet training about a year-and-a-half
ago. I had noticed for a while that whenever Preston wet his pants, which he
really does not like to do, he would start doing some serious head throwing.
Again we heard that his behavior was a blindism and that we must stop it. Dr.
Hammer felt it might possibly be a motor communication on Preston's part. I
began to observe the head throwing. Often I have observed the behavior before
Preston wets his pant. Preston has other more formal ways to signal for the
toilet, however none that he uses consistently. The head throwing does seem
to serve a purpose for him. It communicates that he does understand something
is about to happen (or has happened) that he knows is not supposed to happen.
It signals his distress in not knowing how to react to it. As a parent working
on toileting, this is one stim I do not want to extinguish.
Another new stim that really bothers me is a
flicking motion that Preston does off to one side of his mouth. At first I thought
it was an adaptation of his original flick. But I began to notice that it always
occurred in the same situation. Preston has several areas in his home environment.
These are activity places for him. In these areas are his toys (the ones he
really plays with) or his music box. Outside he can play on the trampoline,
in the sandbox, on his swing set, or a large playhouse. He has many areas he
can go to and be active throughout the day. I have always rotated him through
these areas so that he would not get bored and start stimming. This new stim
began to occur when Preston had been in one of his areas more than 15-20 minutes.
I asked Dr. Hammer why Preston just couldn't change activities or areas on his
own. Dr. Hammer suggested that I have taught him not to change areas, but to
wait for me to move him to the next place. He at least realized there are other
areas to move to and something different to do there. His new flicking may be
a form of motor communication to me, Hey, I'm bored here and I want to move
on. Come and do your thing MOM!
Well, communication, motor or otherwise, is
music to our ears. As Dr. Hammer pointed out, with Preston we can't afford to
extinguish any functional behavior, no matter how strange. We can use these
behaviors to begin building more formal and acceptable forms of communication.
These motor patterns have meaning to Preston and to me. They serve a purpose.
I am not sure if we can mold these patterns into functional signs, but they
are functional gestures.

I am much more comfortable with Preston's self-stimming
behaviors now. I am beginning to look at these movements as a form of communication;
something we can build on as opposed to a mannerism that must be stopped. Preston's
self-stim behaviors are very difficult to explain to teachers, day-care providers,
and the kids on the block. However, for Mom, it's fantastic to think that he
may actually have something to say. He just can't do it in the regular way.
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