Tuesday, January 7, 2014

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.  :)  

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