Saturday, September 14, 2013

I haven't forgotten.

It happens.  Every year at this very same time.  Mid-September, the Canton Friendship festival it pulls me back in time to break my heart and then mends it again.

It's not often I let myself think back to the past but this time of year, I can't help it and I wonder - do those who acted out against my son... does it ever cross your mind?  Because I have not forgotten.  I can't.

Parker had just started 1st grade.  It had been a fight with the school to have Parker included in the regular ed classroom, it was his right but as all special need parents know your rights often are irrelevant if you are not willing to fight for them.  We were about a month into the school year and while Parker was struggling, he was also having success.  I was finding my confidence in his school year when it happened.  That moment where time stood still and my heart sank like it never had before.

It was the end of the week of the Friendship Festival that Friday as I was waiting with the other parents after school for our kids to come out when another mom approached me and asked me if I was aware that there was a petition going around to have Parker removed from the classroom.

Yes. My jaw dropped too.  I could still hear her.  I remember hearing her saying that she did not sign it, that parents were being called by 2 moms, she didn't think it was right and she really felt I should know. 

I couldn't even breathe.  Did I really just hear this? While I will never forget that moment, I will forever be thankful to that mom who reached out to me.

I instantly went inside to the principal who was in her office. I asked her if she was aware of this and she said, "Yes, she was and when parents called asking her about it, she was giving them my phone number so I could explain to them why Parker was in the classroom."  They say there are times when you find what is inside you, that was one of my moments.  I hate confrontation. I always have. I shake and feel as though my insides are being ripped out.  But in that moment of you have crossed my line - I am calm and clear.  I looked directly at her and replied, "You gave them my number and told them to call me?"  She said, "Yes"  I said, "First of all that is illegal, you cannot share my information and two -that is your job. It is your job to explain to the parents why my son has a right to be in his classroom."  A few words later - I walked out with the promise that I would have a lawyer on Monday.

I went home completely crushed, disappointed in the school and full of fear about taking Parker to the festival that evening. It was clear that despite my efforts to raise awareness there were people that would never accept him and would always do what they can to detour the path we are on.

I would have been completely happy staying in the house with the kids and us never, ever leaving the house again but I knew we had to.  If Parker was going to be successful in our community, we needed to be out in it.  He wanted to go and he had just as much of a right as everyone else to be there... and he wanted to go.

Going turned out to be the start of what I needed to see.  So many kids and parents were saying "hi" and "how are you doing?"  and "good to see you" to Parker.

While my heart was still sinking the next morning, I put Parker on my lap in the firetruck so we could throw candy for the parade and what I heard reminded me of the path we were on - kids, parents and teachers were calling his name and waving (and of course, hoping for candy) throughout the entire parade.  I knew the right choice had been made, not just for Parker but for every child that would have class with him.

I did get a lawyer and I did talk to other parents who had been asked to sign the petition but never to the 2 who started it.  Many things had fallen into place and really opened my eyes.  Earlier that week, 2 children had cornered Parker at the top of the slide and were taunting him and antagonizing him.  Parker didn't fall apart like was predicted but completely shut down until his para was able to get to the top of the slide, help him down and put an end to what was going on.  What upset me about this was not only that it happened but that Parker spent the rest of the recess inside and these two continued to play.  Not surprisingly, it was their moms who started the petition.  This wasn't the idea of the two children but the actions encouraged and suggested by their parents.

This taught me one very important thing.  Children are not born hateful and prejudice, that is taught to them. These children didn't dislike Parker for any reason other than their parents did not like him.  Why?  Well, while I'd say it was his behavior one of their kids had stabbed another kid with a pencil in the leg  - far worse than anything Parker had done so that wasn't it.  Parker was different.  He still is. And that - can be intimidating to people.  And by people, I mean adults.  Kids are open and welcoming, they naturally nurture. The fear comes from those around them, that is learned.

While the rest of that school year was filled with bigger challenges it also had planted the seed and convinced me that the next year - I would step in, I would make a difference in the lives of these children.  And I did.

When Parker was in 2nd grade I went into his classroom for the first time talking to his classmates about what Fragile X is.  We talked about all of the things they like to do and the all of the things Parker likes to do.  They saw.. they are more alike than different.  We talked about the ways Parker was different and why that was.  We spent a wonderful afternoon together and could have kept talking as I answered every question and let them know I was always here to answer anything.  I was determined to counter anything negative they were being told about individuals with disabilities, to help them understand and to see Parker and people with any type of disability were really incredible - just like them.

Each year, I have this talk with them, each year I add something more about the biology of fragile x.  I've had many of them contact me so they could do a paper on fragile x or after so that I could read the paper.  (serious pride filled moments)

That year was a defining one for me and while I was sure to make something positive come from it - it's still something that each year when the festival comes to town that hurts my heart, that makes me wonder if they have forgotten the ridiculously hateful thing they attempted to do to an innocent child.  If they continue to teach intolerance and hate to their children. I haven't forgotten. I wonder if I have been able to help their children see that embracing and befriending those with disabilities actually enhances your life.

While I wonder if I will ever have this time of year pass without remembering that time in our life, without the breath being taken away from me and my anxiety skyrocketing  I will continue to use our experience to help empower other families to help them see the importance of reaching out and talking to their child's classmates. 

As hard as this weekend always starts for me, by the end of the weekend I have had so many people tell me how excited they were to see Parker in the parade or stop and talk to him at the carnival my heart is always full and I am reminded of what a great community we live in, that the path we have chosen was the right one and that the kids who have been a part of Parker's life - are better for it... just as he is better because they are in his.

So... no, I haven't forgotten.  I haven't forgotten how my son was treated by these two adults with their attempts to segregate him from his peers.  More importantly, I haven't forgotten the friends he has made and the community that has embraced him.  I haven't forgotten how much he is loved, how far he has come and how much of a positive impact he has made on others. I... haven't forgotten.

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