I Want Underwater Horseback Riding Lessons– NOT!

autism home rescue 10091202When did advocacy in special education become such a battle?  Where exactly did we lose the forest for the trees and start fighting each other over what all of our children (whether they are “special” or “typical”) really need?  Today I read a beautiful comment by a friend and special needs advocate in response to an article in Philadelphia Magazine titled:  “Where All the Children Are Above Average.”  The article, which touched on special education challenges many families and school districts face, totally missed the mark when it came to accurately portraying special needs parents.  And my friend Rachel told them so.

Usually I stay away from hot topics– as you, my faithful tribe of readers, well know.  I avoid them because I’m not about dissecting the points of view or fighting the political battles.  Sure, I have my opinions.  I argue with the skill of a seasoned attorney when the situation calls for it.  And I’ve been known to hire seasoned attorneys to do the arguing for me when the battle becomes too emotional or energy-draining for me to handle on my own.  But the Philly Mag article invoked a different feeling for me. Although I’m not always particularly happy with the current state of our own family’s special needs battles, today I’m not drained, I’m not angry.  I don’t feel entitled to any more than anyone else may be– and indeed I never have felt that way.  Today I’m simply curious.

How exactly did we get to the point where some parent advocates get private horseback riding lessons for their autistic children, while other parents get lost in the system and get nothing?  And more importantly, what can be done to bridge the gaps and bring us forward (not back) to a win-win-win solution so that all kids get what’s fair and appropriate to give them a good shot at a healthy, happy life as contributing members of a peaceful society working toward common goals for the good of everyone?

(Please note:  Not knocking equine therapy here, I think it’s a great tool and helpful for many kids– just trying to illustrate how far apart two families with supposedly equal access to resources can sometimes end up.)

Seriously, people.  It’s not about my motherly wish to give my precious child everything up-to-the-moon and back.  I don’t want the latest and greatest “cure” for autism.  I don’t want whatever is next in line touted as the new “miracle” therapy (underwater horseback riding?  seahorse therapy? … there’s a thought…)  What I do want is a chance for both of my children to get the basics and what’s fair and appropriate under the current systems we have.  And I want to keep dialoguing and opening up communication between parents and experts and teachers and society-at-large in the hopes that new ideas will spark and we will all become a bit more solution-focused and creative for the sake of our children who will shape the future.

autism home rescue 10091203I advocate because I did not make my children who they are.  They were given to me.  The universe blessed me with two amazing individual people who will grow up to have completely different lives, choices, opportunities and experiences.  Alex (with autism) will have obstacles that Hannah (who is typical) will not have.  And vice versa.  As another of my inspiring mom friends said once:

“The real challenge is to raise the children we’ve been given.  Not the kids we expected to have.  Not the kids we wanted.  Not the kids we were, or our parents were, or society expects them to be.  But the actual children who are here.”

I am as encouraged and enthusiastic when Hannah’s teacher says:

“She is struggling with xyz subject right now.”

as I am when her teacher says:

“Hannah excels at this-or-that.”

because through that feedback I learn another characteristic of the ever-growing entity with limitless potential that is my daughter.  Whether or not Hannah has mastered a particular skill or is behind or ahead of her peers academically doesn’t matter to me as much as making sure she knows I believe in her, she has all she needs inside her, and no matter what challenges she may face in her life, there will be some way she will get through them.

Should I care if Hannah gets into the best college one day, or goes on to become a successful fill-in-the-blank– entrepreneur? doctor? teacher? advocate?  Probably.  But I don’t.  It’s just not as important as making sure she believes in herself and keeps trying.  I advocate for her in school because I want her to have the same opportunities her peers have to learn and grow.  With each chance Hannah has to learn a skill, with each discovery her teachers (and her parents) make about her inner workings, how she learns and what motivates her, she moves one step further towards making the world a better place because she will be able to combine her faith, her passion and her persistence to contribute something positive.

I advocate for Alex in the same way.  Just because he communicates differently from his sister does not make him less intelligent or less able.  With each experience he has, with each piece of his puzzle I learn, he too moves forward to fulfilling his ultimate potential in the world.  (Please see the movie “Wretches & Jabberers” okay?)

autism home rescue 10091201I remember a day long ago when I “woke up” to the fact that the world will view my two children– who have the same biology, the same environment and the same family structure– very differently.  All of us were at the playground.  Alex was silently going through a “circuit” he had created, a ritual way of playing which involved climbing up one slide, going down another, running to the steps, across the bridge and down again.  He was absorbed in his repetitive cycle and happily moving through it.

Hannah was tiny and unusually verbose, chattering away using words far beyond typical two-year old capacity, talking to another child near the climbing wall.  The other child’s mother approached me and smiled at their interactions.  Then she said:

“Oh my gosh, your daughter is so intelligent.  Listen to her talk!  You must be so proud.”

I actually didn’t respond at first.  I felt a bit confused by her comment, then curious and defensive as her compliment sunk in.  She didn’t know either of my kids.  But her assumptions were based on what she could see and hear– my daughter’s ability to express herself with spoken words.  The realization struck me profoundly that in order to help both of my children live healthy balanced lives, I was going to have to advocate for each of them in different ways.

Because it wasn’t about teaching the rest of the world that Alex can understand and think the words, or that Hannah had the ability to create complex patterns and remember them as her brother could.  It was about making sure their inside potential didn’t get lost or run over or negated before they were big enough and brave enough and well-equipped enough to shout it to the world themselves.

Alex close upParent advocates are generally not selfish or entitled or asking for or expecting too much.  They don’t talk about their kids or make requests or push for resources because they are anxious or greedy.  They simply are doing their best to raise the kids who were given to them.

That’s important to all of us.  Because doing our best in good faith allows us to build better communities together.  As my advocate friend Rachel wrote in her letter to the editor of Philadelphia Magazine:

“Usually what is good for the individual child is also good for the group.”

Parents of children with special needs advocate because we have no other choice.  These are the tasks we’ve been given, the children with whose care we are entrusted.  None of the parents I know would change their children, but all would remove the obstacles their children face in order to give them the opportunity for a healthy, productive life.

Aren’t health, productivity and contentment key ingredients for a functional, peaceful society?  When will the day come when we don’t have to fight against each other or the institutions, but we can all work together to create the win-win-win for all of our children?

I will speak up for my children until they are big enough and brave enough and well-equipped enough to advocate for their own opportunities in the world.  Because one puzzle piece at a time, one chance at a time… one kid at a time who creates a new way to help, who finds a solution yet undiscovered, who inspires a positive change…  that is the only way the world is going to get better for everyone.

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3 Comments (+add yours?)

  1. Susan Zaslow
    Oct 12, 2012 @ 09:02:05

    Well said. I am again in awe of your insight, your ability to write so beautifully ( and make me tear up) and strength. Lots of love and hugs.

    Reply

  2. Trackback: My pigs LOVE to sing! « Autism Home Rescue

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