Monday, January 10, 2011


Some of you know that I have been working as a paid advocate for the last 15 months.  It's been filled with some very high highs and some very low lows.  I can't, of course, write about any of it here because of privacy.  I recently had an article written in our United Cerebral Palsy Newsletter it is on page 2 under the "Learning the ABC's of IEP'S".  They asked me for a parents name to interview and this is the result.  (Names have been changed) I must say, I was very overwhelmed at the final result.  It is always a good thing to hear that the work you did was appreciated and worthwhile.  This was a happy ending, and one of the first families that I had ever worked with in a "job" capacity.  It felt good.  In fact, often when I leave meetings with parents that went well I get a RUSH of adrenaline.  I like it. 

Unfortunately they don't all go that well.  Surprisingly, most do, but recently I have had a really really tough one.  It is working with these tough circumstances that, if nothing else, make me take a look at our family and remember how darn lucky we are.  I know that.  But a nice reminder every so often doesn't hurt! 

It was after a particularly hard meeting that I went home, slightly in shock at what I had witnessed and began reflecting on the circumstances with Daniel.  What if Daniel was born to a different family?  What if he didn't have parents constantly fighting for him?  What if he was born to a family with no resources? What if he went to a school district that wasn't so supportive?  Where would he be?  If you put the exact same person into these different circumstances, what would happen?  Would he be in this same situation?  Would something within him persevere?  These questions tend to haunt me.  And during this week, it literally made my stomach hurt.  Part of it was the fact that I had had the toughest meeting to date.  The other part was that the day after this meeting I attended a student of the month ceremony at the middle school because Daniel was being honored.  That's right.  Daniel was STUDENT OF THE MONTH at his middle school.  He's in eighth grade, and doing so well!  I am so proud of him.  What an honor!  Daniel was nominated by his English teacher for always being kind to others, complimenting people (thank you speech teacher!) and always working his very hardest.  Which he does.  Every single day.  He earned it.  The best part was he was so proud of himself.  (He is never lacking in that department!) 

His dad and I went early to the middle school with him.  They had bagels and orange juice for the families gathered in the cozy, well stocked library.  There was a big crowd of parents and teachers who came in early (7:30 am) to observe.  A teacher read the letter written to nominate each student.  They each received a certificate from the school and one from our local senator and most importantly a gift certificate to Tasty Twist!  It fills my eyes with tears just thinking about it.  I was so very proud.  I know how hard he works each and every day, sometimes to just get through the day.  Even with all of the sensory overload and distractions, he still manages to buckle down and finish all of his homework in academic support, every day.  No one is making him do that.  In fact, at the open house at the beginning of the year, the teacher for that class said "they won't get all of their homework done in here", to which I could only think, "you don't know Daniel very well....yet".  He will bust his butt not to have to take anything home with him.  Natural consequences and his own reward system. 

But with all of that pride came a sadness thinking about this other child.  As I drove up to that school building I had a moment of wondering if google maps brought me to an old abandon building, only to realize, it hadn't. This was indeed the school.  I'm not naive.  I know what it's like out there.  But it was the huge contrast of that week that made me wonder and weep.  What if these children had switched places?  How would it all turn out?  I have had many dreams about it over the last few weeks.  It is something I will never know the answer to.  I can only be thankful for what we have been given and grateful that our work with Daniel (up to this point) has been successful and look forward that just maybe some of my work can help some more families out there.  I can't ask for much more than that. 

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