Saturday, January 10, 2015

More Than A Number

Alex's evaluation results will tell you a lot. He's a 12 year old boy with medical and educational diagnoses of autism. His receptive language is 6 months, while his expressive language is 12 months. His cognitive ability is 6 months, and his physical abilities are between 12 and 18 months with a few unspecified splinter skills at 28 and 36 months.  There's a lot more to the report, 7 +/- pages more, all saying the same thing. All painting the same picture of a boy I don't recognize.

I gave you a list of things to hold for me, to remind me of when the report came in because I knew how hard the report would hit. The night before the meeting, in a fit of frustration and grief, I called that post nothing a bunch of pretty words that were supposed to make me feel better. In those moments, I felt that the progress I saw was a lie, nothing but a list of wishful thinking. I knew what the report would say.

Standing in the school lobby, talking to the school psychologist, there's a new problem with his placement, but it's not one to worry about because with his scores, there's no way he'd be denied placement in this school.

I sat there and listened to his scores, my eyes glued to the page so that I could absorb the information and so the team could not see me holding back tears. I purposely focused on other subjects for the meeting. The scores meant his placement would be accepted and nothing more. I wanted to know if we were keeping his current 1:1 aide and when I would meet his occupational and speech therapists. I wanted to know when to expect the IEP meeting and what would be discussed there. But the big one, the one I am anxious to know is- are we keeping his current 1:1 aide?

I thought I was avoiding the truth, trying to find anything and everything to distract me from the reality of who my son is and what he is capable of. Late Friday night, driving the backroads on a made-up errand, nothing to distract me from my thoughts, I found the truth. I am not upset that this report tells me who Alex is, because it doesn't. I haven't been kidding myself, I know him. But this report does tell me what other people see when they look at him.

Alex's evaluation results will tell you a lot. They will tell you that he doesn't understand what you say to him. They will tell you that he can't tell you anything. They will tell you that he's not able to think like a normal 12 year old boy, his mind is just not there. He's a 6-12 month old baby in a 12 year old boy's body. They will tell you not to expect too much from him, he's just not capable.

When Alex was in Mapaville in Kindergarten, I was in his classroom a lot. I took him to school pretty regularly, I saw his staff with him, they taught me a lot. I will always be thankful for them. In first grade at a new school, I was asked not to bring Alex to school, it upsets his day. In the special school, I could get as far as the front hall. Back at Mapaville now, I'm back in the classroom. I drop him off and pick him up pretty frequently. I see his staff with him, and they talk to me.

The first day I met his staff, the loud one took charge. She was asking about his behaviors, but she wasn't actually asking. She asked if he bites, but instead of using her words, she used the action. That was odd. and uncomfortable. Like Alex wouldn't know what a biting or headbutting motion was or that his behaviors are a secret...I don't know, but it was not ok. Come to find out, she's not his 1:1 aide. Thank God. Alex would not work well with her. She's nice enough and all but it just would not be a good match.

Another day, I took him in for some reason and helped get him to class. I was standing with my back to his kindergarten BFF, talking to him and his aide, when out of the corner of my eye I saw a flash of ruckus. Before I even registered what was going on, I was pushed hard enough to get my attention- not to hurt. I turned around to see why she pushed me, when from across the room, without hardly a look, came a shout of "hands to self!" When I saw her, her face was red and she was visibly agitated. I said, "You look upset, are you ok?" She sat back in her seat and started brushing her hair back from her face, obviously working on calming herself.  I don't know the girl very well, and I don't know her usual behaviors or triggers or what the other girl did or did not do to upset her, but from a stranger's perspective, it felt like all she needed was for her upset to be acknowledged. I don't want someone to see Alex act out and assume the problem is his behavior. All behavior is communication, look for the reason. Get his side of the story.

 His evaluation results will tell you that he's not able to have a side of the story. His results will tell you that he needs to be managed and that his behaviors need to be stopped- not addressed. This is what people see. He's like a puppy that needs to be fed, pottied, played with, and trained.

This is why I love his aide. Not just in comparison to the possibilities, but all on her own. She's a good woman. She talks to Alex like I do. She watches for signs and reasons. She asks me what I think and how I would handle things. She is so awesomely respectful. He's not a baby, and he doesn't seem to be just a job. He is Alex. She is a quiet advocate. She knows the importance of routines and she is determined to meet his needs. I tried to leave with him one day and she softly but firmly asked if I thought he needed to use the bathroom, she asked him if he needed to go potty. She talked both of us through his potty routine, complete with reasons. He didn't do any of the work and I was distracted by our conversation so I tried to leave. She softly but firmly asked me if I would like for him to wash his hands, and asked him if he wanted to wash his hands. She talked him through the process, asking him to do most of the work, she deftly avoided known behaviors without making a big deal out of it. She knows how to work with him and how to direct me with ease.

I love his teacher. I know first impressions are not always accurate (see: this very post), but I jump on them anyway. every time. This one seemed like she was going to be a problem. When Alex came, they got a new classroom. If I remember correctly, she was hired specifically for this class- brand spanking new. And, she's young- I mean young. She's very quiet, and seems timid. My first impression was- fuck. She's proven that, like Alex, looks can be deceiving. She is very capable of controlling her classroom while staying both quiet and respectful. She listens to her students. She talks to them the way a familiar person would. She is watchful and very much aware that they are more than scores and percentiles, they are people.

I will not say the results are wrong. He legitimately earned his scores, but they don't tell the whole story. He is more than a number. He is a whole, complete, perfectly imperfect person. I guess that's the point in me writing and sharing our story, isn't it?

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