Which came first~the OT or the PT? ~ WAGR Wednesday

Once She Started Walking, She Never Looked Back....

Before I had Evie, I thought OT (occupational therapy) was someone helping another person learn how to do "daily living" things like zipping a zipper, or buttoning a coat.  I thought PT (physical therapy) was someone holding on to two parallel bars and gingerly walking from one end to another.  I never thought that OT and PT would become such an integral part of our family life, but then I didn't know that I would have a child with WAGR Syndrome.

The "R" in WAGR means there is a RANGE of Developmental Delays.  One child may walk and talk along the same developmental scale as a "typically" developing child.  In our case, Evie didn't walk and talk until long after most children start to.  It wasn't from a lack of trying!  We had in-home PT from the time Evie was just a few months old.  Our PT would bring in all kinds of slanted seats and bean bag props to help her develop better posture to compensate for her low-muscle tone; water noodles for holding up and getting Evie to grab on to, and bubbles to blow and get Evie to crawl after or reach out for. I didn't realize that PT was there to help us realize even a small milestone like increasing the degree to which Evie could dorsiflex her foot.  

OT would come into our home and help Evie develop skills like picking up small objects between her fingers, or putting objects into holes, stacking things on top of each other.  These are called fine motor skills, and they were quite challenging for her...even at age 10, she has a hard time locking doors, zipping zippers, putting on shoes, or placing books in a bookshelf.  Is it her vision?  Is it her tactile discrimination?  Is it a nagging inability to use isolated finger movements?  It's quite difficult to know.

What I didn't realize, after Evie started school and was getting services at school and no longer in home, was that OT and PT would once again become very important to us down the road in an "out-patient" setting at the hospitals and clinics in Madison.  We got Evie into OT when she started to have behavioral issues ("meltdowns" if you will).  There were many times that I would actually become afraid because she could grab me and bite me, and had an INCREDIBLY strong grip.  Once I read The Out of Sync Child, I knew that we were dealing with textbook Sensory Processing Disorder.  Evie loved to spin, jump, twirl, ride on carnival rides, fly in planes, bounce...these were all things that seemed to calm her.  The biting was her way of telling me that she felt out of control and unsafe in her surroundings.

The OT recommended an immediate "sensory diet" which consisted of modulated music therapy and the Wilbarger Brushing Technique.  Once we started these techniques, Evie had a developmental explosion...we saw increasingly understandable speech, less frequent and less intense meltdowns, she potty trained (this was much later than other children normally potty train), and she began to walk with more confidence and precision.  It was almost as if she was "in touch" with her body for the first time.

We also had to embark on a new PT journey just a couple of years ago.  Through our participation in the 11p Deletion study at the NIH, we learned that Evie would benefit from orthotics in her shoes.  Once we had an evaluation with a local PT, however, we learned that with therapy, she thought Evie would be able to get by with Super Feet orthotics rather than AFOs or another clinically made orthotic.  Sure enough, after several sessions over several months, Evie's dorsiflex had increased in range (which corrected her toe drop), and she was walking and running better than she ever had before, not to mention a tremendous growth in her endurance for physical activity.

So, which comes first?  OT or PT?  The answer is that it will be different for all of our kids with WAGR, and will be ever changing depending on what will make our kid stronger, more confident, and more capable at any given time.  But it's important to recognize that the two can be closely related and interlocked.  Evie's PT was more successful when she was also immersed with OT and vice versa...they compliment each other quite well in that regard. 

To read more on Sensory Processing Disorder on my blog, you can go to Et Cetera...

To read more on WAGR Syndrome on my blog, go to WAGR or WAGR/11p Deletion...

Et Cetera~Part VI

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.

Here is a good link to follow to learn more about the brushing protocol: http://www.ot-innovations.com/content/view/55/46/

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*)