Wednesday, April 23, 2014

What I Wish You Knew...IEP Edition

Sam and I have attended countless IEPs.  An IEP for those of you blessed not to know is an Individual Educational Program and Isaac (as well as any other child with a qualifying disability under federal IDEA law) is entitled to one.  Without getting into the vat of Alphabet Soup that is Special Needs legislation, I want to pay some homage to the students, parents and professionals who are during these final months of school preparing themselves for this at least confusing and potentially hellish process.

So yeah, disclaimer, I have been to several nasty IEPs.  I have actually been to a few good ones.  Over the course of 13 years (think about that for just a second), I have made an in depth personal study of the IEP process as it relates to my son, my family and my sanity.  There are characteristics of good IEPs and of rotten ones.  As the season begins, I offer this blog....What I Wish You Knew...IEP Edition.

I wish you knew that...

1.  I stood in front of my closet for two hours choosing this outfit.  I have to bring my A game and image goes right along with that.  I debated painstakingly about the exact right combination of sweet, smart and kick butt.  I got ready as a knight prepares to face a dragon.  I hope the encounter will end in the dragon and I sharing tea over a picnic spread but I am prepared with my game face if the situation becomes one of curt negotiation.

2.  I do not share the same cognitive, language and social limitations as my son.  I am intelligent and professional.  Actually, I have studied education specifically for more than a decade, am a certified educator, have a graduate degree and am pursuing another.  I need for you to understand that I am not merely a placeholder in this room but am a viable and essential component of this team which will help shape my son's future.  Please speak to me like a grown up.  Respect my ideas and contributions.

3.  I am personally involved.  You may genuinely care about my son.  I pray you do.  That care will make you do your best for him and keep pushing you and him to greater achievement.  My stake in this is so much greater than yours will ever be.  I labored with this child.  I taught him to use a spoon.  I have been with him through unspeakable behaviors and hard times.  I am right now responsible for him 24/7.  He will be with you for a while but then and always he is mine.  For his sake, I push you to explore all options, to consider all sides, to change your plans in ways that will better serve him even if it makes you work harder.  I may disagree with you.  That's ok.  My differing opinion comes from the fuller knowledge of my child and our family dynamic.  I may not think your plan is viable.  That does not make me a poor parent.

4.  It still hurts.  I need to professionally hear the facts of my son's educational journey with you but the realities of the testing data still hurt.  I will try not to show it.  I will discuss it in depth professionally but when I am alone I will grieve.  What do you do with that knowledge?  I don't want your sympathy and to placate is to malign so please don't.  Please don't tell me you understand.  You don't.  Please don't compare your situation to mine.  Even if you are a special needs parent, you aren't the parent of my special needs child.  You do not understand.  You can't.  You can watch your words. Words are so important and set the tone for the meeting and for our relationship.  Refer to my child by his name and never by his diagnosis.  PLEASE PLEASE PLEASE do NOT use the word "autistic".  His name is Isaac.  Give me the facts and relate them to his current levels of functioning and his proposed goals.  Do it professionally and rely on me to fully process them later.

5.  I am so frustrated with this whole system.  A child's education cannot possibly be worked out via a succession of politically correct, legally stipulated, high stakes board meetings.  It's ridiculous.  I see in your eyes that you know that too.  I don't have horns and you don't either.  I know that.  I'm a teacher too. Education is about relationship.  We team.  We work together for the benefit of this child.  We cannot be afraid of each other.  We cannot fight with each other.  We cannot play games.  The clock is ticking.  My child started so very far behind that we have no time to waste.  I need to be involved throughout.  Communicate with me.  Allow me to visit and help and observe and participate in the same way that a parent of a typical child is encouraged to.  I swear I am not looking for a reason to sue you.  Trust me when I say that raising my child takes enough of my time and energy.

I understand and am grateful for the legal stipulations that bind the special needs educational practice.  My kid is tough and years ago would not have been allowed an education.  I know the reason for the law.  Honestly, the law exists to protect where there is no relationship.

This blog post is tough and potentially confrontational. It isn't meant to be.  I struggled to share this.  My words can be taken in a poor light.  Still, this is a place where I can offer my voice and maybe make some change.  This is a chance to share with you openly and honestly a different perspective.  If you have never seen an IEP from the land beyond the looking glass, you cannot know my perspective nor appreciate my apprehension.  It's about perspective.  It's about relationship.  It's about my child.  It's about Isaac.

This is a good place to stop for now.  There is more to write.  It's exhausting to be this honest with you sweet friends...but it is necessary.  I share my world to open your eyes so that you may understand the perspective of the parent at the table.  I share so that you may communicate wisely and with discretion.  I share so that you may begin to build relationships which will strengthen the education of the child which is at the center of it all.  

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