Don’t Be the A-S-S

autism sparkles-63
A Wonder Soul asked this last week about my kiddo and whether he had been diagnosed as severe early on. It’s a question that’s been trailing me all week. Back in the diagnosis days fifteen years ago, it wasn’t always a helpful process and doctors weren’t always very open or hopeful with the parents. I don’t ever remember hearing a functioning level discussed. One might think that because my son is successful in high school today (at 16) and is independent in his academics that it has always been that way. It has NOT. There were days when his behaviors nearly eclipsed his academics and put educational choices out of our hands.
What I do remember is him not being accepted into the same”typical” preschools his siblings attended because of his volatile behavior, his lack of speech, the fact that he was still in diapers at four, and because the preschool administrator looked at me like I had a third eye when I mentioned he was autistic. What I do remember is being in the special ed classes in preschool through our local elementary school. What I do remember is wanting my boy to be recommended for the combo kindergarten class Florida offered where two teachers (one sped and one reg ed teacher) team taught a class that was mixed with regular ed and SPED students….t-o-g-e-t-h-e-r. Yeah, we wanted to be part of that.
I remember the crushing feeling when I heard we would not be recommended for that class and, instead, would be placed into a isolated special day class for kids with varying disabilities.I remember the first day of that class. I remember walking in and knowing that class was not the right placement for us ….not because I didn’t want him with other kids like him but I knew, from the way the class was set up with toys and fun zones, that once he got used to playing all day, we’d never get him to buckle down and do academics again because playing on the computer and in the kitchen area is a lot more fun and behaviors would escalate further to get back to the fun zones he wanted.
That’s when I went back to the team and the teacher and I pleaded and I promised and I pledged all my time to them to help make up for the time my boy would take away from their other students. I also recognized that there was a chance I was in denial and the new placement wouldn’t work so I asked them to give us just three months. I promised after three months if it was not a good fit, I would be the first one to remove him.
I tell people often that that one decision changed everything. It was the difference between my son sinking and swimming academically. It was a risk and I understand they had never taken such risks before but, that day, they did and they gave my son the chance to rise up to the expectations set before him. To this day, those two teachers and the two aides in the class, to me, are the Godsends that changed the direction of our lives forever. Nicole and Kim (last names not used because I do not know if they would want them used publicly) were, and are still, the magic in our memories and I’m thankful every day for the risk they all took for my boy.
I promise you it was not a simple or easy year.
Progress was not magic.
My boy was not always kind and did not make great choices.
He challenged them every single day but they did not give up.  No matter how much he screamed in opposition, no matter how much he snotted on their clothes, no matter how much he tried to manipulate to get what he wanted…..they never gave up on him.
Later that year, when it was time for our IEP meeting in prep for first grade the first words I heard out of our team was, “We’re sorry.” Their response was stunning and, to this day, I still marvel at it. Their honesty, their transparency and their genuine love of their students is something all teams should aspire to.
A stunned me asked an obvious, “Why?”
As they spoke, I heard these words, “We’re sorry. We thought we understood your son’s educational level. We thought we knew how far he could go but we were wrong. We were all wrong. Your son is a red flag to us that there is a lot we don’t know and we shouldn’t assume we understand a child’s potential just because we know his current functioning levels.”
And like I said before, I’m not sure if my son was considered “severe” back in those early days but he was challenged enough not to be seen as a candidate for classes with his typical peers. What I do know now, with certainty, is where he is today because of the risks and challenges that were taken.
Lesson #1: Don’t be the a-s-s in the word a-s-s-u-m-e. Never assume.
Lesson #2: Keep raising goals because kiddos just might surprise you and rise up to meet them.  Listen to you…no one knows your kiddo like you do and if the powers that be can’t initially see it, keep working at it because there is nothing more regretful that opportunities not seized.
Sparkle On, my friends.
Never. Give. Up.

2 thoughts on “Don’t Be the A-S-S

  1. THIS WAS EXACTLY WHAT I NEEDED TO READ TODAY – ***THANK YOU***
    I will head into my son’s three-year IEP eval tomorrow with your words buoying me.
    I try to explain to people what it’s like to have a kid about whom people make a lot of ASSumptions that may not be right – sometimes they expect too much, but., more often, too little. That’s where we come in – yet we may feel unqualified or overwhelmed. we know our children best, along with they themselves, though, and that’s the key.
    Thanks again – love,

    • Oh girlie. Just saw this. I hope that IEP went well! I feel what you’re saying. I always felt so inept in IEP meetings and understood so little in those early years but our love for our kiddos pushes us forward even in those moments when we don’t always feel like we know what we’re doing. You are the only thing standing in between your child and all those assumptions 🙂

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