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home : opinion : opinion/editorial August 28, 2014

5/22/2013 3:41:00 PM
Guest Essay: No More IEPs
A Guest Essay By Cari Levin, Founder and Executive Director of CASE


My son’s final IEP meeting is tomorrow at 10:00.  It’s very weird to think about that.  Since he was in kindergarten I have struggled to make sure school went well for him; hours of conversations, hundreds of meetings, the reams of documents, overwhelming frustration, etc.  Even a Due Process Hearing.  And now it’s over?

I feel such a strange combination of loss and fear of being too relieved.  What am I losing?  My purpose?  My baby?  Both?  If I relax and feel too happy about it, something bad will happen.  Isn’t that always the way it’s gone?

He is 18 years old, over 6 feet tall and strong as a bear.  How did we get here?

There was confusing, conflicting information.  Helpful professionals, hurtful not-so-professionals.  Compassionate teachers, dreadful teachers.  Social rejection.  Fighting to tame the beast called bipolar disorder. The medication odyssey to find the right cocktail.  Hospitalization.  (No one brings you casseroles.)  Meltdowns, sleepless nights, tears.  Fear and isolation.  Emotional exhaustion.  Longing for the chance to take normalcy for granted.  Craving peace.  Rage at ignorant strangers.  “He looks normal, must be bad parenting.” Therapy and more therapy.  A life-saving therapeutic day school placement in sixth grade.  Moments of happiness and joy.  The overwhelming love when looking at his sleeping face each night.  Opening my eyes each morning and my first thought: “Oh crap, here we go again.” Never giving up.

For so many years protecting my son has entirely defined my purpose in life.  I have had to sacrifice myself in ways beyond what typical parents do.  The deep and constant worry, hyper-vigilance.  Anger at his disease, anger at him.  Quitting my job.  Having to parent in ways that didn’t come naturally.  Bracing for the next crisis, never really exhaling.  Dreading that phone call from the school.  Never going out in public without a back-up plan. 

It is terrifying to think about letting him go out on his own, more and more, without my supervision or ability to intervene.  He won’t always do the right thing.  He will be impulsive and socially inappropriate.  He might not take his medication regularly.  He will make poor choices and bad decisions.  Sometimes he won’t fit in, his feelings will get hurt, and he will be lonely.  He might have an accident, get in trouble or worse. I won’t be able to protect him, pave the way or smooth things over.  I won’t be there to interpret the world for him or explain who he is to others.

And yet, my son is amazing.  He is the strongest, most persistent and brave person I know.  Life has not been easy for him.  When I look at him now I am amazed at the person he has become.  He is brilliant and articulate. He has a maturity and wisdom that most 18-year-old young men do not have.  He recognizes other people’s pain, and his first impulse is to help.  He gets angry about injustice.  He is brave enough to speak publicly and without shame about his illness.  He has integrity.  He has overcome most of his obstacles through hard work and with the support of others.  And he won’t have to live with his parents forever.  He is going to college.  He wants to get a degree in U.S. Foreign Policy and International Relations.  And I know he can do it.  How about that.

I do believe that he will turn to me and others when he needs help, that he will have the skills to cope with challenges along the way, that he will draw on the resilience and confidence that he has built up over the years, that ultimately he will remember everything we (his parents, teachers, therapists and doctors) have taught him.  He is a bright, sensitive and funny person.  He will find meaningful work.  If he remembers to be himself, people will like him, and he will find somebody to love who loves him too.

At the end of the day, I do think we did everything we could for him and more.  He is as well-adjusted and stable as I could have hoped for, and I trust that his life will continue to move in a positive direction.  Life is hard for everyone, with or without a mental illness.  I pray that he will take good care of himself.

So who am I now?  My son has taught me to be persistent, to pick myself up and try again, and to have the courage to face adversity.  I am an advocate.  I support other parents going through this special-education odyssey.  And I will always have the privilege of being his mother.







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