One Fight at a Time!

Day 12:  the 31 For 21 Blog Challenge Bringing Acceptance and Awareness for Down Syndrome

It’s been a rough couple of weeks in our house, some the kids don’t even know about.  In all the hustle and the bustle of trying to mediate the confrontations that have taken a forefront, it has been difficult to keep the world balanced for Bradley.  And balanced is really important for him.  His best learning happens when the same routines happen and when the people that rule his world keep the same relationships that they have had.  When things change drastically, my non-verbal son will find a way to let us all know that things are not right and his world has turned upside down. 

We have a new Principal for Bradley, he took over last year.  He didn’t do much last year, but this year he started trying to implement some aspects to our classrooms that were not so great for all the students, especially a few of the more medically fragile kids.  It was weird, our son is the equivalent of a three to four year old, and so we’re talking pre-school ability.  His non-verbal status makes his six years much younger.  When someone starts talking about Independence it is something that I consider much further down the line.  Our Principal started thinking that should start now.  Things came to a point where we were dropping our kids at the door of the classroom, no speaking to his teacher to the point that we were relaying information only through the journal that we have for communication.  Three pages at a time, both ways…it became intrusive and for Eric and I, it was bordering on dangerous. 

Last year, we let a behaviorist come into our house every Thursday for two hours of intensive therapy to teach us how to help him not hurt himself, to redirect his behaviors to positive outcomes.  His non-verbal status would definitely create anger, frustration and sadness when he couldn’t express his desires.  His needs we could take care of, but his desires – those extra things were often lost.  We spent hours learning how to help him deal with these things, how to redirect him away from the negative or dangerous aspects, how to stop the meltdowns.   And over time we saw this happen.  We watched his frustration start to ease as he was dealing with his environment better.  He became less shy, more sociable. 

When the relationship between his teacher and his mom changed, then things changed with Bradley too.  All the work seemed to have never happened.   He would sit in the middle of the floor and scream his anger because he couldn’t do what he wanted to do.  Our management of his tantrums and meltdowns worked, but they just took longer, so much longer.  In his own way he was relaying to us that something was wrong in his world, he could feel the tension as much as we could.  I dreaded taking him to school, I dreaded leaving him and finally looked at Eric and I told him that I was ready to pull him from this school entirely.  I want to preface that statement with this one:  I used to love this class and I used to feel nothing but secure to leave my son with this teacher and these aides.  For me to want to pull him from this school was a result of extreme disappointment and sleepless nights as I tried to weigh what he was learning vs. what we were losing every day. 

Last Friday morning; the Principal stopped me to talk, then made the mistake of asking me my opinion.   I am not one to run from confrontation; I am not one to run to it either.  Given the choice I like to plan my arguments in order to sound intelligent.  I want to ensure that I can represent myself appropriately.  I think things through a lot.  Turns out, I have thought about nothing but this situation with Bradley and in that moment I was thorough, I was clear, and I was ready with my arguments.  I had been invited to a meeting after school with the Principal, the teacher and two other parents.  Eric changed his schedule to also attend and we slowly managed to peel away the layers until we were able to reach through the nonsense to reveal the personal aspects of what was in truth a veiled attack against the parents that leave their kids in the morning and pick them up in the afternoon, that would be those of us at this meeting.   

I didn’t realize the extent of how much I was weighed by this situation or how much it has affected me and my family until my husband lit into that principal.  He let him know how much this situation has set back our son in behaviors that is left for me to deal with because Bradley is with me most of the time.  How we spent a year with a behaviorist that had unraveled and left for mostly me to restring.  He was speaking of our son, but he was defending me, fighting for our son, but fighting for me.  Determined that we fix this situation or our family was going to be walking away. 

In the end, we walked away in peace.  Apologies were made, and hugs were shared between us and the woman that we trust to care for and teach our son.  We have a wary regard for the Principal, because we caught him in a lie.  And honestly, I am trying desperately to let it go, trying to ease the worry and trying not to feel wary around his teacher (we hope the Principal is the only one that lied and not the teacher…but what if we were wrong?)  I am trying not to be the one that holds a grudge, I am hoping that I am the one that lets it go and moves on.  Given the sensitivity of my son; the ability he has to comprehend more than I have any idea of how he does or does not know all that he knows, I don’t have any choice but to let it go and do what is best for Bradley.  So good mornings are shared, pleasantries exchanged and important tidbits of information are shared in order to keep Bradley safe.   Since keeping him safe is the most important matter, things are slowing getting back to “normal”.   Mom will merely pull on her big girl pants and manage to let this all slowly fade into a distasteful memory. 

Considering I then had to jump into yet another big confrontation last Tuesday, this mom held her own…but is still considering a weekend of adult fruit juice.  I am a mom that lives in a small little family and triesto keep the wheels on the wagon and the kids growing up strong and healthy, I never wanted to be a part of politics.  I guess it is gratifying that I can hold my own in the political nonsense, but good Lord, please spare me the constant place in the fight.  Sigh, oh forget the weekend, I’m starting now…and forget the fruit juice, I’m headed straight to coffee…the hard stuff…well, Decaf anyhow: I am hoping to sleep in between Bradley’s nightly visits! 

So ends a week of fighting to make the world a better place for at least two of the kids in our family…the third one will have to wait her turn until next week.  Mom needs a breather!