For weeks now Teddy’s first grade year has been on my mind. I have been thinking about it ever since I pulled out his IEP Notebook, opened it up to the 1st grade section and read through the notes, the Social Stories and the behavioral charts. Oh my god the behavioral charts, there were so many of them because at one point his behavior was graded HOURLY.
Yes, my child lived under a behavioral magnifying glass for a good part of the first grade year. The part, that is, of first grade when he was an enrolled student.
Kindergarten was such an easy memory to revisit. Ted had a delightful teacher and a successful year. First grade, well, I have been trying to figure out how to get my mental arms around the magnitude of fail that was first grade. There were so many things that happened. There were so many things that went wrong. There were so many opportunities to salvage the situation, but it was never salvaged.
Ted’s first grade year makes me sad.
What happened was an indictment of almost everything that is wrong with bureaucratic systems and how, when we as adults get so damned fixed on what WE want, how WE do things, on defending our position as right, we completely lose focus on what is really important, what is supposedly our main concern and that is the CHILD.
Yet the irony is we live in a culture where you hear about how much kids matter. How they are our future. How they are our country’s most valuable resource. Blah, blah, blah. But so often all that espousing just sounds like bullshit.
Because if it isn’t bullshit, why then, when you have a kid, our so-called most valuable resource, do you have to fight like hell to get them help?
And so often, when you do ask for help or you provide workable solutions to a problem, instead of support you hear,
“We don’t do that.”
Which of course means we don’t WANT to do that because we will have to CHANGE what we do and well, we don’t change because that requires EFFORT.
Or another favorite, “He is just going to have to learn.”
I HATE “He is just going to have to learn.”
Never did I hear, WE need to teach Teddy. Never. It was always TEDDY is going to have to learn.
Okay, fine. You don’t want to teach my child, then pay him your salary since you want him to do the work.
Let’s face it, when you have a child who is the least bit different, and I am not talking just Asperger’s here, I am talking if they are a square peg in any way, the primary burden for adaptation, or “learning” falls on their shoulders because the world isn’t going to change for them.
And it is sad to think we experienced, while trying to get help for our child, a school that supposedly exists for children, really seemed to exist to support adults. Literally. It was clearly THEIR institution and their needs and wants were met before those of the children.
And what is saddest about Teddy’s first grade year is that I truly believe, with the perspective 14 years brings, that an inflexible educational system lost an inquisitive, motivated and extremely gifted learner.
For over and over he was rebuked for being excited about learning and was punished for desiring more challenging work. His problem, and sadly it did become his problem, was he didn’t fit their one–size-fits-all mold and rather than seeing the opportunity to create a new mold, he was broken.
And I let it happen.
Now I am not getting all Monday Morning Quarterback on myself. No. Nor am I going to get lost in woulda, coulda, shouldas because they are a bottomless pit of hell. Instead I am going to say that my learning came at a very steep price and I am once again reminded of how valuable a resource blogs can be. There is so much information and support now. In 1998 we had dial-up and there was one Asperger’s website I knew about, Barb Kirby’s O.A.S.I.S. I knew one other mom locally who had a child with high-functioning autism. Her son is two years older than Teddy. There wasn’t the breadth of knowledge available nor was there much advocacy.
Having an advocate is so important. They can honor your feelings and ground you. They can be there to listen and support you. They aren’t tired and stressed and scared so they can be strong for you when you get knocked down. They can be there for you until you get on your feet again, regain your balance and strength so you can say,
“I will NOT accept, ‘You don’t do that.’ ”
Or, “It is YOUR RESPONSIBILITY to TEACH my child and then, after much teaching, he will learn.”
And with that said dear reader, if YOU need help, if YOU are overwhelmed, contact me. Talk to me. Let me or another parent who has been there listen and help you. If we pooled our resources and decades of experience just think of the difference we can make for each other and for our children.
Now that makes me happy.