How differently I think now...

When I was teaching third grade, I had a quiet girl in my class who was the sister to an older brother with special needs.  I didn't teach him, but I knew of him.  I never knew the details of his disabilities, but I did know about his mother.  She was a strong advocate for him, and I remember hearing that she was always ready to fight for what she believed he deserved.  Back then, it seemed unnecessary.  Almost like a form of bullying.  Oh, how differently I think now...  This mom is now the executive director of a parent resource center.  Advocating for and helping others is her mission.  Here is a letter I wrote to her last night:

Hi Margaret*,

I hope you and your children are well.  Pictures of Elizabeth* show that she has grown into a beautiful young woman.  Please send her my love.

I remember emailing you back when we were transitioning Olivia from CDSA to preschool, seeking advice on how to handle our first IEP meeting.  That was almost three years ago.  I can’t believe how fast time flies.  Olivia now has a diagnosis of low-functioning autism (as well as arthrogryposis).  She will be six on May 19^th and still doesn’t walk.  She is preverbal.  She is as much of a mystery as she was at the age of three.

When I was in the classroom, I remember hearing stories about parents of special needs children.  The stories often depicted defensive parents, coming to an IEP meeting as if they were ready for battle before the conversation even started.  As a teacher, I didn’t understand.  Weren’t we all on the same team?  Didn’t we all want what was best for the children? 

Now, I’m on the other side of that table.  I’m a parent of a child with many special needs.  And I’m realizing that Brian and I are Olivia’s ONLY true advocates.  There are so many people who love our girl and who want what’s best for her, but at the end of the day, it’s me and Brian.  We know her best.  We are the ones who do all the research.  We gather all the documentation and head into yet another doctor’s office miles from home.  We think surely we should have earned a PhD by now as we read the test results and try to put the puzzle pieces together.  We immerse ourselves into her world.

And we’ve learned that passively expecting others to provide for her needs doesn’t always work.  Sometimes, you have to step up and fight for what’s right.  You come to realize that, all too often, you will have to prove that your child is deserving.  That she needs speech therapy.  That she deserves a bath seat.  That she requires help to be engaged in the smallest of tasks.  You realize that your child needs more than most of her peers.  You soon see that you’ll have to learn the system inside and out and proactively prepare for the worst scenario.  You’ll have to get your ducks in a row and know all the rules of the game.

And after a while, you find that you are perpetually in defense mode.  After all, in order to not be caught off-guard, you have to be on-guard…

I didn’t understand back then.  Back when I was a new teacher, naïve and idealistic.  Back when I was a mother to a typically-developing baby.  I heard tales of fighting insurance, fighting schools, fighting legislators, fighting the system.  But, it was too-far removed from my life for me to truly grasp the reality of it all.

When Brian spent days on the phone last year trying to wade through the red-tape of applying for CAP-C and Medicaid, he told one of our state representatives, “We are trying to help our child.  It should just be easier than this.”  I don’t think truer words have ever been spoken.

I know that you understand.  And even though I never taught your son, I feel compelled to let you know that I wrongly judged you.  I’m so sorry.  I didn’t, maybe even couldn’t, understand why you were fighting so hard for your child, for what you believed he deserved.  Even from a distance, I made lots of assumptions.  It makes me ache to think of my ignorance. 

I believe God’s plan is perfect, thought it’s not always easy to keep focus on that belief, especially on days when Olivia only communicates with head-banging and pinching.  While I shudder to think of the mistakes I’ve made as a teacher, a mother, a child of God, I trust that He can take these mistakes and help me grow from them.  I pray that I don’t miss an opportunity to do exactly that.

I don’t know the details of your journey, no more than you know mine.  But, if I’ve learned anything on my journey with Olivia, it’s that we all have a story.  Many stories, really.  Wouldn’t this world be a better place if we stopped once in a while and listened to, felt, embraced  the stories of those around us?  If we traded in judgment and pity for help and compassion?  I’m sure you’ve dreamed of such a world.

Thank you for advocating for your child and for the children of others.  Thank you for staying the course, no matter who did or didn’t “get it” along the way.  I know it hasn’t been an easy road, but I now know firsthand that it is a road paved in love.

Donna

  

 *names have been changed