Saturday, June 16, 2012

Fathers Everywhere

Okay...I'm sure my mother is shaking her head, saying "You wrote about Father's Day LAST year...and his head STILL hasn't deflated!"  And yes, that is true (at least the first part)...and I do try hard not to repeat myself.  Also, before we started racing toward another Father's Day, my family celebrated two birthdays--my sister's AND my mom's.  June is a big month in our family!  So first let me give a BIG birthday shout out to two wonderful women.  I know neither one of you are big fans of birthdays, like I am, but despite that I hope you both had great ones!!  And tomorrow I'll be wishing my father another Happy Father's Day, for he certainly deserves the well wishes...but for now, I'd like to talk about another father that I have gotten to know, if only through his words.

As a blogger, I enjoy reading other blogger's work as well...and when one resonates with me in a particular way, I like to pass it on.  One blog I have been reading for a while now, is called Fighting Monsters With Rubber Swords at: http://www.schuylersmonsterblog.com/.  My friend K turned me onto this site years ago, and it is just exceptional.  The focus of Rob Rummel-Hudson's blog is his daughter, Schuyler, who was diagnosed with bilateral perisylvian polymicrogyria...an extremely rare neurological disorder.  Among the many challenges Schuyler (and other children with BPP) have to face, is an inability to speak/communicate without the use of assistive devices.  That is a challenge which is hard for me to imagine, since I have never had difficulty making myself heard. 

Having a rare neurological disorder myself, I have connected to many things this particular father has written, as Schuyler faces the world's obstacles and discriminations.  And my challenges seem slight to what this girl has often faced, with a determination that is also rare in today's society...though I find myself connecting to Rob's posts for other reasons as well, due to my background in special education.  When I was a teacher, I often found myself on opposite sides of the table from the school's administration in regards to my student's needs...fighting for approval to get assistive tech devices for children who needed them to learn, and communicate.  The frustration of cost overriding necessity, despite documented proof of need, often made me want to turn in my resignation.  Though I think what was even harder were the times where cost was not a problem, and my students were given what they needed to succeed...only to have other professionals within the school refusing to properly accommodate these children, by not allowing them opportunities to use their devices and not providing something as simple as the space and time in which to use them.  Sounds unbelievable, right??  But truth is often a rude awakener...and the world can be very unaccepting of differences.  I taught a melting pot of students in the past, in the fact that their individual needs and challenges were pretty diverse.  Some students used augmentative & alternative communication (AAC) devices to communicate...some children used wheelchairs, braces and canes, and even others used adaptive chairs and other equipment to function within the classroom.  And as successful as my students could be with these many devices, the further they travelled out into the world, the less successful they felt.  Those devices served as beacons, pointing out the differences in bright neon for everyone to see...and the world could often be very insulting in their responses.  I actually had a regular education teacher who argued with me about the simple task of rearranging her classroom desks to accommodate a student's wheelchair, so that this child could join her peers for group activities.  It was a never-ending battle, often requiring me to develop my 'detective skills' and check up on people who should know better...to make sure that accommodations were given on a regular basis to the students that needed them, and not just when I was peering over the teacher's shoulder.

We wish for many things in this life.  Those wishes may change as we get older, becoming more realistic, as we experience life and learn what is important.  Some of us still hold onto those unrealistic dreams, grasping them in times of frustration and stress...such as wishing for large sums of money to show up, which we believe will fix our problems and change our futures.  That's perfectly normal...I've wished to win the lottery quite often in the past few years, especially since dramatic changes have happened in my life.  And if we are able to raise our heads above the crowd every so often and look beyond ourselves, we may wish for good health, happiness and even wealth for others.  I imagine those moments increase when you are a parent.  I imagine they increase DRAMATICALLY when you're the parent of a child with special needs.  Though the wishes these parents utter in those quiet moments, the dreams they grasp onto as they watch their children struggle...the prayers they whisper in the hopes that they will be heard, might just surprise you.  I highly doubt that money is prayed about all that often, other than the prayers concerning the amount of money needed for their children to receive the equipment they require.  I have a feeling that most of these parent's prayers are small, though they mean very big things for the children in question.  Please don't let my child get picked on today for her braces...Please help my little boy get through his day without having a meltdown...PLEASE help my daughter communicate with her friends, and help them to listen to what she has to say.  And when you see these prayers answered, it must be tremendous...though when they aren't, it must be devastating.

So I send this post out to fathers everywhere, especially to those who have children with special needs.  A father's job in particular is one of protection, from the troubles in the world...it must be very difficult to watch the struggles of their children, especially when they face obstacles that are beyond anyone's ability to move.  Exceptional fathers can't completely clear their children's path, taking away all the struggles...though what makes them exceptional is that they do whatever they can to help their children get through them and maneuver around them, one little step at a time.  And so let me say Happy Father's Day to my own father, who has done his best to help me maneuver around the obstacles I've had to face throughout my life...I hope you all have exceptional fathers as well, and can remember them at this time.  And if you will, please take a moment to check out Rob's blog and learn about how he views his role as the father of a wonderful and determined young girl like Schuyler...it will be well worth the read!

4 comments:

  1. I love this post Christine. Beautiful. And you have a great dad!!

    And he has a great daughter!

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  2. I heartily agree with her last comment!

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  3. Fran sent me here, I am the father of a 21 year old wonderful boy named Skyler. He has Spastic Quad CP, and is the light of my life.

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