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. 

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.

Our Mess is the Best~WAGR Wednesdays

As I sit in our new home...well, we've been here for about 2 months now...I look around and am so pleased to be in a cleaner, less cluttered environment.  But it's not easy to do.  Not with a child with WAGR syndrome.  I'm sure my fellow moms and dads can support me when I say that many of our kids can create the best mess around.

It seems reasonable to say that having a child with a vision impairment would lead to more messes...spills, dumps, difficulty in picking this up that have been left around.  But, I actually think it's Evie's sensory issues that create the worst mess of all.  From what I've observed, throwing books, scattering dolls, flinging doctor kits and projecting plastic food and kitchen utensils is an unchallengeable talent of Evie's.  

I can clean her room up every day, but later that same day the books are all out of the book shelf and every toy has been removed from the clear plastic toy box.  (I note that it's clear because I once answered the theory of a therapist that Evie may throw all her toys out because she needed them to be visible.  "Get a clear plastic toy box and I bet that behavior will cease."  No.)

Evie also LOVES to rip up and crumple paper!  Oh joy!  I just finally had to dig out her construction paper because there was an epidemic of tearing and crumpling my good card stock.  At least the construction paper is less expensive...so...GREAT Christmas present idea, everyone!!!

I had heard the suggestion of saving catalogs and phone books to enable Evie to tear those pages.  I did that for a little while, but found that she still would find a simple notebook or, worse yet, her OWN books to tear pages out of.  (I have become quite the book-repair genius, I might add.)

The great thing about our big move is that it gave me a chance to purge a lot of the "flingables" that aren't really played with.  As a matter of fact, I just got her "toy box" put in a closet yesterday...it had been stacked under boxes and was still taped closed by the moving company.  Yes, two months here, and she had never once gone looking for those toys.  

I can tell you that Evie, and possibly Jeff as well, are not too thrilled with my innate desire to keep our new house "clean."  Although, I have found that helping me with things like vacuuming and swiffering floors seem to be favorite activities for Evie.  But, I will typically become quite stressed at the end of the day when I survey the floors in the each room and see scraps of paper, books on the floor, clothes spilling out of closets and the rest of the "art" that Evie has created during the day.  

It's a balancing act.  Do I fry myself each day trying to clean up behind Hurricane Hefty?  Or, do I take a deep breath, tell myself that we'll do the same thing tomorrow and not to waste my time that could be spent doing other thing?  

I roll the dice and let fate decide...

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.