Wednesday, January 29, 2014

IEP's, Meltdowns and Being the Very Best Jerk I Can Be

So, we had an IEP planned for yesterday that didn't happen.  It was -20 degrees here and school was cancelled, but the meeting was called off last Friday for reasons I can best describe as vague.

I get it.  Things happen.  Meetings get cancelled.  Life goes on.

If it hadn't been the most important meeting in my kid's school life, I probably would have been fine with the change of plans. But, it is the most important meeting in my kid's life, so I freaked out a little bit.  I may have called the coordinator a few times.  I may have left a shaky voiced message on her voicemail.  Did you ever get so angry you were actually shaking?  Yes.  That.

Anyway, this was supposed to be a high school placement meeting for my kid.  It had been planned for months.  I was anticipating it with equal parts dread and excitement.  Dread, because I was pretty certain that their offerings were not going to be exactly what we wanted and we would probably be gearing up for a fight.  Excitement because, hey!  It's not every day that your kid starts high school! 

So, you can see why pushing it off (for three months!  What?!?!?) would not make me happy.  Now, I have more time to perseverate on the whole business; ponder the endless unknowns; fight to keep the devil on my right shoulder and the Polyanna angel on my left from throttling each other.  

Now, I've had a couple of days to digest the whole business and I decided that I would write a letter to Chooch's team, outlining the way I want his high school career to look; ideas that I have been thinking about since, oh...1999. 

and here it is:

Dear Team, 

This is my son, Charles.  We are here to find the best possible placement for him.  Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses.  He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.  

He wants what all of us want out of life:  To love and be loved, to have friends and to be included.  That last part is tricky, because it can't really be quantified.  I am afraid that sometimes, the human being gets lost in the graphs and percentiles.  I am afraid that for some, my Charles is a challenge at best and a problem at worst.

Numbers are not my son's best friend, whether they are problems on a math work sheet, IQ points or figures on a percentile chart.  I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life:  Being accepted and included.

Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers.  If you think I am exaggerating, consider what happens when people are segregated from society.  

Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son.  My husband and I want full participation in life (not just school) for Charles and every child who comes after him.

I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.

Thank you.


  1. Way to go! I get it was for you kid but I hope it helps all our kids. Thank you.

  2. Excellent start to any meeting. And not really jerky at all.

    1. I was being jerky before I wrote this. It just sounded good. :)

  3. God, Hernando. I am totally using your letter (okay?). Just awesome.

  4. I bet this will be one of those letters that gets copied a lot. How awesome!