If You Give a Kid a Cane...

 

If you give a kid a cane, she'll want to take a walk outside.

You'll take her on one of your favorite scenic walks, and she'll probably notice all of the birds and wildlife.

She'll ask you for more knowledge on that wildlife, and when you give her that knowledge she'll probably want to go to college to learn more. 

College will be so exciting that she'll want to go to grad school!

Then she'll be busy writing papers and being a teaching assistant. 

She'll need a new outfit for her first job interview. 

So, you'll have a fun shopping trip before she flies off to DC. 

She'll interview at the Smithsonian Museum of Air and Space. 

While she's interviewing, she'll realize how much she loves the hustle and bustle of the city. 

She'll get the job and then she'll have to move!

So, you'll hire movers. 

When she's packing, you'll find all kinds of old momentos of growing up. 

You'll play cards, and boardgames, and flip through some of her favorite books from when she was younger.

Then she'll want to see some of her first braille books that seemed so difficult to read back then.

So, you'll run to the closet and pull them out, 

You'll read Freckle Juice, and Frog and Toad, and If You Give a Pig a Pancake...

Then you'll pull out her first cane from when she was 3 years old. 

It'll seem hardly tall enough for an American Girl Doll to use, 

and she'll want to try it out for fun,

and you'll laugh at how tiny it is. 

She'll decide she wants to take it to DC with her as a keepsake. 

Then she'll probably hug you. 

And chances are, 

she'll thank you for believing in her and pushing her to grow, 

then she'll want to take a walk with you again before it's time to go off to her new, independent life. 

Inspired by the Laura Numeroff "If You Give a Pig a Pancake" book series, and by my daughter. 

The Word Woven into the Code

Evie interlining her Braille assignment.

Just last weekend I attended a breakout session at my church for volunteers to help re-fuel us and our "servant-hearts". During the break out session, I learned about the impact the translation of the Bible into English had on literacy rates. According to the Washington Times: 

...in a period of 100 years reading and writing English among males in England went from about 5 percent of the population to 25% eventually reaching 40% of the population. By 1770, shopkeepers were 95% literate. Literacy in England is directly attributable to the Bible. (Creason, Washington Times, 12/11/14).

My Oversized Poster of Strong Groupsigns

Scripture certainly does give us something worth reading, and at that time it may have been some of the ONLY stuff to read. Now we are bombarded with all kinds of leisure reading options, some worthy and others not...but the Bible, unfortunately finds itself all too often resting on a lonely shelf collecting dust and cobwebs.

Fast forward a few days to today, and my daughter and I working on her Braille lesson. She was brailling Psalm 27: 1-2 which is part of our scripture memorization. As she was doing this, she recognized that she was making mistakes and wanted to fix them. I told her to just keep going and that she could interline her work (print the translation above the brailled symbols) after she was finished, and then we would make corrections the next day.

While she was working on her Braille, I was also working on mine. I was using large paper to create giant posters with CONTRACTED Braille on them so we could continue learning where she left off last year. (She was in public school, but we started homeschooling just this fall). As I was preparing a poster and reading through the various contractions, I started to take note of some unique words that I had no IDEA would be a part of the contracted Braille code.

lord

spirit

world

rejoice

rejoicing

character

ought

knowledge

shall

thyself

Of all the words that could have been transferred into a shortened code in order to make Braille easier to read for its audience...these were worthy enough to be part of that pool.

These beautifully Biblical words were suddenly a part of our lesson plan. 

Evie's Braille assignment with interlining notes,
corrections she made, and new contractions for her to work on
as she continues to practice brailling Psalm 27: 1-2

I was flabbergasted...I was moved almost to a point of tears as I felt relief wash over me. One of the toughest parts of the decision to homeschool my daughter was knowing that we were not going to have access to Braille lessons in the district anymore and I would be responsible for continuing her Braille literacy. I didn't know quite where to begin-but something in my gut today said, "Tammie, just have her start with something she knows...her memory verses."

We will begin to learn those contractions because they will occur over and over again in the scripture that we will be proclaiming in thought, word, deed...and now in Braille. For sure, God's plan is always better than my plan, and His word is a light unto my path.

For the word of God is alive and active...

Hebrews 4:12 NIV

Fight Night ~ The Battle with Braille

Ladies and gentlemen, welcome to The Ring! Tonight we will see the anticipated match-up of Hefty verses Braille.  This highly anticipated fight is brought to you after years of training, and lots of education, sweat and tears.  The opponents are in their corners and reading to come out swinging; so get ready for an exciting battle.

Bong!  Round 1:  

I heard it first at the Parents of Visually Impaired Pre-Schoolers conference, "Start Braille early."  It will be a challenge, but we need Braille in our arsenal of weapons as our child is at risk of losing her vision.  

Jab, jab...

No problem.  We have a great system and are already learning tactile discrimination in our home visits from the Vision Specialist.

Thwack...

Easy peasy.  

Floored.

Better get some water...I'm already sweating.

Bong!   Round 2:  

Oh, yeah.  We are rocking you, Braille!  I'm even using sidewalk chalk to make Braille cells in our driveway and having our daughter jump to different letters to show-off her awesome memorization of the Braille code! 

Jab, upper-cut...

Another new TVI this year?  Hmmm...it's tough to learn when the teacher isn't the same each year...

Wait!  It's October now and our daughter hasn't had any Braille services yet this school year?

Ooof!  Stars burst in front of my eyes.  I shake the cobwebs from my head.

It's okay.  It's okay.  Just got a phone call and the district finally found a teacher.  Her services will start soon again and we'll be caught up.

Saved by the bell.

I need to towel off...the sweat is running into my eyes and I can hardly see straight.  That punch landed right where it hurt!

Bong!  Round 3:  

So, 90 minutes of Braille instruction a week...and it's hard to spread them out because the teachers are pulled to so many schools and over-worked and hard to find, so we're doing ALL 90 minutes at once. How many 6 year olds can stay focused for 90 minutes on BRAILLE?  

Ouch!  It feels like my nose just exploded.  How did I not see that coming?

BUT at least we're getting services, right?  I should be happy about that.  Grateful.

End of the school year...saved by the bell again.

I stumble to my corner and sit wearily on my stool.  This Braille is a tough opponent.  I need to build my strategy better.

Bong!  Round 4:

Yeah...that's right.  I'm coming for you Braille.  I'm taking a class on-line so I can learn all about you and THEN we'll see who will knock out WHOM!  

Got my own slate and stylus.  Look at me!  I know my stuff!  I'm at the head of the class.  Now I can help my daughter with her homework and we will be FINE!

Jab, cross, upper-cut.

Boom.  Floored ya, Braille.  

How you like momma now?

I strut over to my corner; don't even need to sit down, I'm on FIRE!!!

Bong!  Round 5:  

There's my girl...she's getting 30 minutes A DAY of Braille.  She still can't read it with her fingers very well, but she's learning the code like a champ!  We're Brailling her class Valentines and she's loving it.  

Speed Bag...look at us now!

Jab, jab....Jib-Jab!

Hmmm...you're surprisingly strong, my opponent...and we're caught in a CLINCH.  

The ref calls it, and we hear the bell.

Bong!  Round 6:

New state, new rules.  They "suggest" a school for our daughter that has more students who are learning Braille.  I say, "No.  She's already made friends here, she's already bonded to her teachers.  We just moved her half way across the country.  No way.  That's not inclusion." 

Okay then...30 minutes of Braille a week.  Wait, a WEEK?  Well, ummmm...okay....I guess we'll just work harder at home.

Jab.

Would that type of instruction be acceptable for learning to read print?

Bam!

Would that amount of time be okay regarding any other GENERAL education requirement?

Thwack, wam!

Now we've moved it to 60 minutes every OTHER week?  

SLAM!!!!

"She's behind.  She's not learning it.  She's not practicing."  

I'm dizzy.  I'm stumbling.  I can't form the words that I need to express how I'm feeling.

Saved (?) by the bell....

I crawl to my corner.  I'm on the floor with my arm draped on the ropes.  My coach is pouring water into my mouth and it runs down my chin and bleeds onto my top.  

I should have fought harder.  I should not have caved so quickly three years ago.  But now it's been three years, and the pattern has been established.  NOW, she's having to do so much to stay on top of her other classwork that I don't blame her for not wanting to work on this.  Why WOULD she prioritize learning something for a teacher she only sees two times a month at most?

I should have trained harder.  I know how to advocate.  But, when I'm fighting SO many battles for things like medicaid and good doctors, then some of the battles get written off as "the least of my concerns for now."  

A parent responds to my call for help from an on-line support group, "Of course they moved her to 30 minutes a week because no one can learn anything in that time, and eventually you'll stop trying, and THEY can stop teaching it."  

Another parent says their child had 60 minutes a day at my daughter's age...another says 90 minutes a day.  A DAY!

"Don't give up on Braille...you can't use technology when the power goes out."

Yes, yes...all so true.  And all adding to the cacophony in my brain.

How many times did I get hit?  Can I stand up again?  I really just want to close my eyes and go to sleep.

Bong!  Round 7 is about to begin...and I'm spent.

What Does THAT Mean? ~ WAGR Wednesday

Image Courtesy of Zirconicusso/freedigitalphotos.net

Another Gorilla Mom (a mom of a child with WAGR Syndrome) and I were discussing the baffling or confusing terms that doctors may use when describing our children or a diagnosis concerning our children.  It led me to consider writing about my top 5 confusing terms that our healthcare providers may use concerning the health of our children or a particular diagnosis for them.  

1. His/Her vision will be (severely) compromised.
If your child is a non-communicative baby and you hear something like this, you have no clue what to expect.  However, from my experience with Evie, I see how well she functions even with 20/200 vision (legally blind).  She has adapted well to her surroundings and uses her vision, as it is, so I will often forget that she IS legally blind until I see her bump into something, or skip over something she may be trying to read.  
 
2.  The scan/ultra sound show the kidneys are unremarkable.
Is that good?  Is that bad?  I don't get it.  When we get a clean kidney scan I want to hear, "Everything looked great."  I want to spike the ball in the end zone and do a touchdown dance.  But, unremarkable is good; that means there is nothing to be seen that needs further investigation.  I will often just follow up with the doctor and say, "That's good?  Everything is clear?" just to calm my anxiety.  
 
3.  90th percentile.
Woo-hoo!  With my academic background, 90% was always AWESOME!  Not so much with the blood pressures or the BMI (Body Mass Indicator), though.  
Because of the increased risk of kidney failure in persons with WAGR/11p Deletion, we need to keep blood pressure and weight LOWER than might often be "acceptable."  Evie was once in the 99th percentile for BMI, and her BP was also in the 90th percentile.  
With the BMI, bumping over 99th percentile would have significantly increased her risk for developing diabetes; we had to take action to help her lose weight.  And, concerning the elevated blood pressure,  we needed to reduce the strain on the kidneys, so, according to our doctor at the NIH, we wanted to get her blood pressure to within the 50th percentile. 

4.  Kidney function is adequate/sufficient.  
Pardon me?  That does NOT sound good.  However, because Evie had part of her kidney removed, she would have less than 100% function anyway.  A person who has only one kidney will be at 50% kidney function, so it doesn't necessarily mean that kidney isn't working.   20% kidney function will start affecting the persons health, and 10-15% kidney function requires dialysis or transplant.  (WebMD)

5.  Elevated white blood cell counts.
I knew that when Evie was on chemo for Wilms Tumor, her white blood cell counts could drop and that would put her at risk for contracting illnesses because it would mean her immune system was suppressed.   However, the first time we went in to the clinic because of a fever while she was on chemo, they reported that her white blood cell count was elevated.  I was RELIEVED because I thought it meant that she still had a high immunity despite her chemo treatment.  I was wrong.  The elevated white blood cell count indicated that her body was FIGHTING an infection.  It turned out that, at that time, Evie had pneumonia, so her white blood cells were rallying and trying to fight it off. 

These are just five of the common (or most memorable for me) "ambiguous" terms that can affect a person with WAGR.  I'm sure there have been other terms that have confused me, but these just stand out as the ones that really caught me off guard.  

What ambiguous or confusing terms have you come across in your medical journey?

Et Cetera...Part I

We see and hear the term so often, ETC..., et cetera....  It means "and other things".  In our life, in our home, we have a LOT of et ceteras.  Rare disease will do that. You see, the 'WAGR' in  WAGR Syndrome (www.wagr.org) is pretty misleading.  Each of the letters stands for one of several "afflictions" that are common among people with WAGR.  

• Wilms Tumor 
• Aniridia
• Genitourinary Abnormalities
• Range of Developmental Delays

What "they" {they being whoever names diseases and syndromes) really need to do in the medical world is add the proverbial "ETC" onto the end of WAGR Syndrome...

I'm going to take the next week and write daily about the "Et Ceteras" of WAGR Syndrome.  I'll start with the actual letters first and then move into the "Et Ceteras" that many doctors don't recognize yet, but that the families with WAGR have identified through our networking with one another. 

First, "W"...Wilms Tumor.  At least 50% of people with WAGR Syndrome will develop Wilms Tumor (childhood kidney cancer.)  The cancer can occur quite early, so Evie started having ultra sounds at the age of 6 months.  She was diagnosed with Wilms Tumor already at age 15 months.   This shows why early diagnosis of WAGR is quite important; because early detection of Wilms is better for treatment. 

I'm glad, now, that Evie had Wilms so young.  I don't' want to ever have to tell her that she has cancer.  I don't ever want to try to explain to her how bad things like cancer are just "something" that she has to deal with.  But, it was also not easy having an infant with cancer.  An infant who stopped drinking after the second dose of chemo, and we didn't know why.  An infant who would cry in the middle of the night and we didn't know if it was constipation or just intense pain from the chemo. 

We were lucky, though.  Evie's Wilms was only on the left kidney.  But for some of the children it can occur on both kidneys, that's called Bilateral Wilms.  At first Evie's doctors wanted to remove the entire kidney, but there's also an increased risk for kidney failure in people with WAGR, so sparing as much kidney as possible is important.  Evie's doctors decided to do chemo first and then just remove the "tumors" and the cancer cells rather than remove the entire kidney.  Evie had 18 weeks of chemotherapy.  That's a lot less than other kids have to endure if the cancer is discovered in a more advanced stage; it's also much less than the children diagnosed 20 years ago had to endure.

The other tricky thing about these WAGR kidneys is that they develop nephrogenic rests.  These are things that look like tumors, but may not be cancerous.  HOWEVER, they can turn into cancer; so many doctors, when they see the nephrogenic rests will also treat the rests in a similar way to the actual tumors; with chemotherapy.  It's hard to mentally justify seeing your child go through chemotherapy when there's 'technically' not a cancer diagnosis; but that's a WAGR Et Cetera that comes with the territory. 

So, we have a lot of Wilms Champions in our support group.  Our kids always astound us with their strength, their resilience and their attitudes.  They usually handle Wilms Tumor better than many of us would handle a cold.  Their grace and perseverance keeps us going on even the most difficult days. 

And, that's the "W", in a nut shell.  If you'd like to read more from me about our personal journey through cancer, I had a Caringbridge site that I would update regularly when Evie was going through chemotherapy.  The web address for that site is www.caringbridge.org/visit/eviejo . 

Tomorrow I'll write a bit (keep in mind that I'm not a doctor or scientist, just a mom writing from my own basic understanding) about the "A" in WAGR...aniridia...or the absence of an iris in the eye. 

Just Blind Enough

How many of you remember Mary Ingalls going blind?  Having grown up in the late 70's and 80's, I am a product of Little House on the Prairie and I will never forget Mary screaming, "Pa, I can't see, I can't see!!!" Charles scaled the ladder to loft faster than a squirrel up a tree-and Mary grabbed hold of him with clenched white fingers as if holding on for dear life.

This was the image still embossed in my brain when I learned that my daughter, Evie would be blind.  She was only a few days old when we learned of her eye condition, aniridia.  She doesn't have irises, the colored part of her eye, just pupils. Cataracts and glaucoma are also a threat to her eye, and she has an increased risk of developing keratopathy (dry eye)  or a detached retina.  

The interesting  dilemma we find ourselves in today, however, is that, although Evie is legally blind, she still has very useful vision.  She needs to learn braille and cane-travel because it's easier to learn that now, while she's in school, and while her brain is still quick to absorb all the information that children can and do.  Learning braille is just like learning Spanish or German; learning cane-travel is much like taking ballet.  But still having the "useful" vision that she does,  gives her the innate compulsion to USE that vision rather than learning the methods used by those who are fully blind. 

I equate this dilemma to when my sister and I traveled to Mexico for a home stay with a family.  The family spoke Spanish and we were there to practice our Spanish.  We had to talk slowly, dig around in our brains for the right translations, and often we learned what we didn't yet know.  But we DID know English, and that would have been faster for us.  So whenever we met someone who spoke English, we would revert right back to that first language that we'd been hearing since birth. 

In the same respect, Evie reverts back to using her vision whenever she can.  She's learning braille, and memorizes the dots in the braille cells just like we memorize the shape of the English alphabet letters; but when the dots are there on the paper in front of her, rather than feeling the dots, she will hold them as close to her right eye (the "good" eye) as possible and READ the dots. A blindfold is required when we practice her braille because of that strong gravitational pull which draws the paper to her eye.  Yes, I have to blindfold my blind child to do her homework.

It's just interesting to think that her usable vision, which we ultimately know will fade as she gets older, is an obstacle that keeps her from leaping forward in the "subjects" that are helpful to those who are blind.  Of course we cherish every day that Evie can see; can read large print, can read signs in the stores and on building fronts, can recognize faces...it's all a gift.  I know many families of children with Evie's condition have struggled with watching the vision that their child once had disappear.  I know we will go through that too.  But for today, I'll thank God for making Evie "just blind enough" that we can plan for the future, but still see what beauty is here before our eyes..

What is the one thing that YOU would miss seeing if you were to go blind?

The Fear I Fear I'll Pass On...

I looked at Evie tonight at dinner and said, "You know, Evie, with your scabbed elbow, patch of cellulitis on your other arm, scabby bug bites on your legs, and the Band-Aid over your toe that the toenail is falling off of...you look like any normal kid." ...and my heart swelled.

Having a child who's blind, having a child who's got anxiety that is "off the charts" (according to her medical reports), having a child who's got a sub-average IQ and is quite vulnerable in the world; that could all lead my husband and I to say, "No, thank you, we can't do that," or "Gosh, we'd better stay home," or "I don't think that's safe."  But I have been learning that I don't want to "pass on" to Evie any fears of this world that she shouldn't have.  I don't want her to FEAR doing things that other kids should and would be able to do.

I look for ways to make things "doable." I want her to experience the same things, even if it's a different way.  That's why we went to Me and My Gal camp at Camp Black Hawk in Elton, WI.  It's a Girl Scout camp, and as a mom, I was able to go too!  I knew that Evie would not be able to handle a day-camp, let alone a sleep-away camp, at this time with her anxiety and inability to advocate for herself.  So, I signed us up for camp together. 

Mind you...I am not "outdoorsy".  Actually, my mom and my sister were PROBABLY waiting for me to call them in tears myself the 4 days Evie and I were at camp.  Seriously, I couldn't handle a tent in our suburban backyard when I was younger.  I found a eyelash in my mouth one time, and was convinced that I had swallowed a wood tick and would likely die within 48 hours.  So, you put this mommy in the deep woods, in a platform tent, with a bathroom about a 3 minute walk to the lake, with no electric in our tent, with mosquito netting around our cots to "attempt" to keep out pests....well, I was a little wee bit outside my comfort zone.  But I thought to myself, "You, Tammie Jo, will be brave for your daughter this time.  You can no longer be wimpy."

And we did it!!!  What's more, we enjoyed ourselves, and can't wait to go back!"  Did the mosquitos and spiders and deer fly, and horsefly, and ticks drive me batty? (Yes, there were bats too!)  Of course the did.  Did I feel creepy and crawly, and say a few extra prayers every night and every morning?  You bet I did!  Did Evie get frightened by the darkness in our tent, and finally did we agree to sleep in our car to have the light of the moon? You bet she did!  And was I MORE than happy to sleep in the car as well, because it meant fewer bugs...aaahhh, that would be a BIG, YES!  We slept darn well in that little blue Camrey...Evie was actually crushed when I told her we were NOT really going to sleep in it when we got home.

Despite my fears, despite HER fears, we: went horseback riding, made journals, helped "hop" for our table, went out in the row boat just the two of us, tie died shirts, made polymer clay jewels for a necklace, sang songs, roasted marshmellows, swam at the lake front, showered in those public showers with moths flying around that were the size of small birds...we did it...and we can't wait to go back next year and try to do even MORE than we accomplished this year.

And isn't that what life is all about?  Taking steps toward doing things you never thought you could?  I had fessed up to Jeff about two days before the trip that I was TERRIFIED.  But I knew that God would never leave me, nor forsake me...so I knew that I had the biggest most powerful God over all the Universe on my side. 
Whom, or what, shall I fear?

Then, when I had some quiet time and was reading a recent edition of Future Reflections (www.nfb.org), I read an article called, "The Federation in Your Journey; The Courage to Try."  It was written by Mary Ellen Gabias, who is legally blind.  She wrote about a "paradigm" that she has lived with:  DON'T MOVE.  She told a story from when she was five years old and had gone out to play with a friend.  Her mom had said, "Don't go near the side yard.  Workers are repairing the septic tank."  (vol. 32, no. 1, p 1.)  However, Mary Ellen did not heed her mother's warning, and she ran "full speed ahead".  As Mary Ellen said, "Gravity won."  Her mother told her, "You pay a price when you don't pay attention."

Mary Ellen goes on to write that she was so ever grateful that her mother had not said, "Don't Run!  It's too dangerous for you."  However, she also goes on to write that, "A long white cane would have made things far easier for me, but my parents told themselves a story that, along with a tin cup and a handful of pencils, the cane was part of the beggar's badge.  I became afraid to move because I lacked the tool that would have helped me."  (p. 2)

Wow~what a sobering thought.  I DO need to make sure that Evie feels capable to do things on her own, and not afraid that MOVING can be dangerous.  I'm so thankful she has her wonderful Ms. Kay to teach her cane travel.  Ms. Kay gives Evie so much confidence and courage and KNOWLEDGE that she requires to become independent.  I even learned on a cane-walk with them NOT to hold Evie's hand, and NOT to try to assist her on the stairs.  Stay out of her way, she knows what she's doing when she has that cane in her hand.  On several of her walks this past week, I have been trekking right out onto the street to cross and Evie has stopped and checked and listened...ooops.  Do I ever feel sheepish then! 

So, Evie has her share of bruises, and bumps, and blemishes.  But, really, that is a thrill to me at this point in time.  I see that she is not afraid to be a kid.  I think that is a big accomplishment, and something we can continue to build on as we deal with her anxiety, and as we deal with school becoming more difficult, and as we deal with the heart aches that come with being a teen ager in the next few years (yikes!). 

And I'll be praying for her AND for me.  That I shelter when sheltering is required, and I let her soar when her she's just itching to get out of the nest. 

Evie Jo's Sight Factory

Every human being is equipped with a sense called "sight." The sight comes from a place called the Sight Factory. Evie Jo had two major CEO's at her Sight Factory: Louisa Left-Eye and Ruby Right-Eye. This is a story about how the two CEO's dealt with major upheaval in their company.

In the early development of the Sight Factory, one important employee forgot to come to work, Isabella Iris. She didn't know she was supposed to work at the Sight Factory because the Human Resource managers on chromosomes 11 and 15 translocated some information and forgot to schedule Isabella Iris for her orientation. It was very unforunate that Isabella Iris couldn't work at the Sight Factory as she had such a colorful personality.

Louisa Left Eye had to work extra hard because of the Human Resource manager's miscommunication. HR didn't fully develop the employees as the Sight Factory and they even hired bad employees like Gary Glaucoma and Cataract Kate. Louisa Left Eye was trying to fire Gary Glaucoma from the very first day. She would write him up for disruptive behavior and try to retrain him with drops and surgeries. These fixes all were temporary, and a few weeks later, Gary would act up again. Gary Glaucoma liked to pressure Louisa Left Eye and she didn't work well under pressure.

In June of 2005, Louisa thought she had solved the problem by brining in Ahmed, the implanted valve to help relieve her pressure and eventually fire Gary Glaucoma. Several months passed, however, and suddenly Ahmed quit working and that allowed Gary to misbehave again. Louisa Left Eye was under so much pressure that her half of the Sight Factory became foggy and clouded over. Cataract Kate took advantage of the fogginess and she became a larger and larger presence as well. Soon, Gary and Kate prevented any work from being done at the Sight Factory at all.

Poor Louisa Left Eye felt she had failed Evie Jo. But, Evie Jo had already started using Ruby Right Eye for the majority of her Sight Factory needs. Evie Jo was just tired of the pressure from Gary Glaucoma, so she gave Louisa Left Eye early retirment and decided all her Sight Factory needs would go through Ruby Right Eye from that day forward.
.