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 IV

Et Cetera…And other things.  

Our Family 2013

I’ve been writing about all of the “other things” that are part of WAGR Syndrome.  I remember reading about WAGR when Evie was first diagnosed with it; reading about the cancer, the aniridia and possibility of vision impairment, the genitourinary abnormalities and what it all could imply for her future; for our future.  I remember the “R” in WAGR being the least of my concerns.  “I can handle whatever the ‘range of developmental delays’ may come,” I thought.  But it’s not that easy…

This “range of delays,” you see, creates an enormous sense of uncertainty.  As Evie was growing and maturing, I couldn’t tell what her future would look like.  Would she walk?  Would she talk?  Would she read?  Evie started to “miss” the milestones that often mark the growth and development of babies from her early infancy.  I remember getting mailings from the hospital where she was born.  They would read like this, “At age 6 months your baby is now doing this…”  No, my baby was not.  At age 18 months, when my baby still wasn’t talking or walking, I just started throwing the mailings away without opening.  They weren’t going to be able to tell me anything about my baby anymore.

Starting at about three months, Evie was getting speech and physical therapy in our home.  She also had an early learning specialist who would work on more general development skills.  All of those people meant so much to us.  They had gentleness, hope, and understanding for what we were going through that was hard to find in every-day life.  They challenged Evie, and she would rise to the challenge.  They taught me how to push her; that’s not easy to do…as a mother I didn’t want to watch my child struggle, but the therapists helped me develop the gut to tolerate it by knowing that I was doing Evie no favors by letting her just survive in life without the skills to thrive in life.  Somehow, each of them had the ability to put me at ease by helping me focus on where Evie was at today rather than me worrying where she’d be, or not be in the next week, month or year.

Evie sat up for the first time when she was 15 months old.  She started walking with assistance when she was about two years old.  She really started to use words around age three years, but it wasn’t very understandable.  Despite all these delays, we knew Evie was quite “bright.”  She could use sign language quite well and could communicate most of her needs through sign language that her speech therapist had taught us.  She memorized songs and could hum them and sing them without the words, and they’d be spot on.   

When Evie was around four or five years old, I had applied for her to get covered under a county program that helps pay for therapies and assistive technologies for children with developmental delays.  Evie was turned down because they said she didn’t qualify under their conditions.  I couldn’t believe that she didn’t qualify, her delays were obvious; so I filed an appeal.   In order to strengthen our case, I would up taking Evie to a barrage of assessments which yielded reports that clearly demonstrated her delays.  That appeal process was mentally draining.  I felt as though all I could do at that point was focus on Evie’s deficits.  That’s what parents HAVE to do when they are fighting for services for their child.  They HAVE to walk a tightrope with positive outlooks on one side and negative reality on the other.  So, even when people would say, “But, Tammie, look how far she’s come,” I’d have to say to the courts, “Look at everything my child CAN’T do…”.  If you know any parents going through an appeal for services, or an IEP (Individual Education Plan); be patient with them, it’s not easy. You can really start to feel like a negative person when you have to focus on the deficits; and that’s NOT me, but I had to be that person for Evie’s sake, as her mother and advocate.

Despite Evie’s delays, she is in a mainstream classroom with some pullout time for special help on math and reading.  She still gets speech therapy and is learning Braille and cane-traveling skills.  Evie’s friends are amazing, and the school district we are in has encouraged me to continue to communicate closely with them on how Evie is doing, and what, if anything we need to change or alter for her.

Evie has a great memory, but her logic skills are lacking.  She can memorize her multiplication tables, but she doesn’t understand how or why the numbers equal what they do.  Evie can listen to me read a chapter, and she can read words herself from a book, but I don’t think she quite “comprehends” what is going on.  She might be able to give you the “facts” of the story, but interpretation would be lacking.  She’d write a book report that Sergeant Friday would highly approve.   “Just the facts...”

The hardest thing for me is to watch her struggle with her homework.  She doesn’t like me to correct her, she easily becomes enraged.  (And I do not use the “enraged” lightly here; I call it “Unleash the Dragon” because it is such a fit.)  However, she doesn’t want to walk away from unfinished work either, and that really complicates things.  A neuropsychology report from an evaluation she had a year ago says that Evie’s IEP goals should be written to mastery.  In other words, Evie’s anxiety about unfinished work is such that she agonizes over moving on to another topic before fully understanding the current topic.  That’s not really how our education system works.  Often, the students have to keep up with the pace set by the majority; so we will have to see how Evie does as her curriculum continues to grow increasingly difficult.

Having touched on the “R” here, (and there was much more I could have expanded on), tomorrow I’ll begin talking about the Et Ceteras that have not necessarily been well documented in the medical arena; but that, through the IWSA, families who network together have, through shared stories, determined are “other things” that are typical of people with WAGR Syndrome.  Toe-walking, tight heel chords, speech apraxia, Sensory Processing Disorder, disrupted sleep…the list goes on and on!  Thanks for hanging in there with me as I tackle this topic from a “mommy” point of view.  

P.S. I hope my typos are few and far between, but with our Polar Vortex, and having Evie home with me from school, I think I may be missing things in my proof-reading.  :)