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| Badgers Through and Through |
I thought Evie had autism.
She would crawl into a room and start looking for something and I would cringe, because I knew what would happen next; she’d bang her head against whatever she had found. She would lay on the floor and rock back and
forth and flap her arms up and down against her sides. She would grab her hair and pull it out of
her head, she’d grab her shirt and put it in her mouth and tear it with her
teeth. I’ll admit that I had fears of the
demon-possessed people in the Bible who “rented their robes and gnashed their
teeth.”
A good friend of mine whose son has autism helped me figure
out where to go to get Evie evaluated, AND she gave me a book called The Out-of-Sync
Child, by Carol Kranowitz. I
started reading the various descriptions of types of Sensory Processing
Disorder. I recall reading the
description of a child who had Sensory Modulation Disorder and was sensory-seeking;
oh my, did that ever sound like Evie.
As it turned out, Sensory Processing Disorder (SPD) was
another common “Et Cetera” of WAGR Syndrome.
I wanted to be sure to cover SPD in my week of writing about the “Et
Ceteras” of WAGR because it CAN seem like an endless nightmare until you find
out what you can do about it. We have
had many conversations about SPD in our support group for families with WAGR, and we share
lots of tips and tricks for how to deal with SPD. As a matter of fact, we even have The Out-of-Sync
Child in our lending library for our families.
The best thing we did once we found out Evie had SPD was
start meeting with an Occupational Therapist.
In Evie’s case, she needed sensory input. Evie wanted to feel things, and I think it
was because she couldn’t identify where her body was, or what it was
doing. It was almost like she was
looking for some sort of “grounding.”
Our initial course of action included the following:
(Please, understand that NONE of this should be done without the direct supervision
of an Occupation Therapist. Things can
get seriously messed up if this is done without the training and supervision of
a professional.)
Modulated Music Therapy:
CD’s were provided by Evie’s OT that had modified music recorded on them…Evie
was to listen to the music through headphones for a certain length of time every day. We noticed changes in Evie almost
immediately. The music would calm her if she was having a “meltdown.” And her “meltdowns”
became fewer and fewer.
Wilbarger Brushing Protocol:
When we first started this, we were trained on how to do it, and then we
had to train others because for the first week, we had to do this every 2 hours
while Evie was awake. It involved using
a soft (although from what I hear, various children prefer various textures) brush
(the one we used was like the brushes they use on infant’s scalps in the
hospital). With very specific directions, we were trained to brush the arms, hands, back, legs (NEVER stomach), and
feet. I’m telling you the honest truth…it
took one day of brushing Evie every 2 hours and we saw immediate changes in
behavior. She got up out of her bed for
the first time EVER and walked to our room in the middle of the night. Prior to the brushing protocol, if she woke
in the night she would sit in her bed and cry.
I don’t think she was confident that she had control of her body prior
to the therapy. Evie’s speech improved,
and she toilet-trained within a couple of weeks of brushing.
Joint Compressions: I
had heard about this at several of the conferences we attended put on by the
Wisconsin Center for the Blind and Visually Impaired. I didn’t realize how much it would actually
help US! Once Evie started the brushing
protocol, the joint compressions were usually part of that whole routine. Even after we stopped the brushing, we
continued with the joint compressions and still use them from time to time if
Evie needs to “chill.” This process is
kind of like giving a massage, but it’s done by compressing various joints in
the body rather than massaging the muscles.
To learn more about the joint compressions you can check out this site http://sensoryandmore.com/2011/08/11/joint-compressions/
.
There is so much hope to be found in learning about SPD and
how to create a “sensory diet” (a staple, consistent system on which the
individual can rely that gives him or her just the right sensory feedback for
which they search.) It takes research, it takes time, it takes professional
help and input; but it is so worth it.
Things we do to help Evie continue to get the sensory input
she needs include:
- Jumping, running, spinning, dancing
- Working with play-dough
- Carrying heavy items from point A to point B
- Using rice packs, weighted blankets or bean bags
on Evie’s lap or across her shoulders when she’s transitioning between
activities or seems distressed
- Preparing Evie for unusual days, and changes in
schedule or routine in advance, if possible
- Using schedules to help her “visualize” her day
This is not an exhaustive list by any means, and every child
is different. I’m quite pleased, (now
that we know how to manage it), that Evie is sensory-seeking…that also equates
to “thrill seeker” which makes amusement parks quite an adventure, plane rides
a treat, para-sailing a literal “breeze,” and loud music concerts awesome!
To be
quite honest, I think many of us have some sort of sensory issues and we can
all benefit from a sensory diet. Take a
look at the success of the candle industry, aromatherapy, and ambient sound-makers;
there’s some real evidence that we all benefit from some sort of sensory input
to help regulate our systems and keep us feeling content.
Speaking of ambient sounds, I’m ready to turn on a little
sound-therapy myself so I can get my mind, body and spirit ready for bed. Tomorrow I’ll write about sleep,
actually, or the lack there of. That’s
right, another “Et Cetera” of WAGR is disrupted sleep, or trouble falling to
sleep, or not even sleeping at all. (*gulp*)
