Raising an autistic child
Comments 15

Set Sail For Fail: 1st Grade, Part One


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.


  1. OMG – how maddening that must have been to consistently hear “he’ll just have to learn,” without hearing how they planned to teach. You were pioneers, really. Hopefully things are much better in first grade now. What changed for you? Did you hire an advocate? Pull him out of school? I love stories about older autistic children – your son’s is the first generation that we can really learn from. The rest of us who came before were pretty much left to our own devices.

    • Sadly the story gets worse before it gets better – culminating in a self-contained, emotionally disturbed classroom and us hiring an attorney to get him removed. Stay tuned, will be working on writing the next part in a few days. Thanks for stopping by!

  2. Pingback: Set Sail For Fail: 1st Grade, Part Two « Life and Ink

  3. arianezurcher says

    I began with your powerful post written on March 23rd and am working my way back. So glad to have found your blog. I will keep reading backwards. I have so many questions, but will keep reading first. Thank you for writing this. My daughter Emma was diagnosed with PDD-NOS when she was two in 2004. Now she is considered “moderately autistic” and just turned ten. She goes to a school for autistic children.

    • Hello! Well I am so glad you stopped by too! Please know if you have any questions, ask. I know what it is like to have a head full of questions. And even if I don’t know the answer, I am happy to listen and provide support and most of all to help you remember you are not alone. Good luck and thanks for your kind words.
      p.s. “moderately autistic”, reminds me of when the doctor told me my pregnancy test result was a “weak positive.” I wondered, did that mean I am just a “little” pregnant? :-)

  4. arianezurcher says

    This post of yours inspired me to write this (in a piece just out for the Huffington Post – http://www.huffingtonpost.com/ariane-zurcher/autism-awareness_b_1378828.html) “Let me give you a list of blogs and people you can call who have been where you are now. I think you’ll find them invaluable. These are parents whose children are autistic and autistic adults who are happy to speak with you. They will help you help your child.” It was a hypothetical “what if” this was said to us when we were given the autism diagnosis.

    • Wow. This is awesome. I am humbled to think I contributed to such a fantastic article. And what is so frustrating is that the picture you paint of veterans helping the rookies isn’t fantasy land stuff, but as of yet it doesn’t seem to be happening. So now it is you who has inspired me, as I am more engaged than ever in making the diagnosis of autism, as you described, become a reality. Thank you.

  5. arianezurcher says

    What a nice thing to say. By the way, I loved the – does this mean I’m just a little pregnant? That made me laugh. These distinctions, which are all so subjective and in many ways limiting, annoy me more and more. I also want to say how thoughtful it is for you to think of those of us who are trailing behind.

    “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.”

    This is such a wonderful sentiment. And I, for one, will take you up on this. That feeling of lying wide awake in the middle of the night, chastising myself for not having been more patient, for having raised my voice, when my daughter was in full perseverative, fixation mode about going to the zoo for the two thousandth time even though we’d prepared her for the last two days that we would not be going to the zoo, that feeling that if I were a better mother, I would not only take her, but I’d enjoy it, that feeling that I’m the only one who feels this way, that all those other mothers of autistic children are handling it far, far better than I, that feeling of being so very alone, all alone, those are the feelings… Those are the feelings that I know (I think) others can relate to. An autistic woman commented on the Huffington Post piece “we will soldier on.” And I just loved that she wrote “we” because we will. Each of us, together.

    • Ariane, I have much to say in response to your comment and this morning the words I wish to say came to me in an idea for a post which I will be working on soon, but first wanted to ask if I could use some of your words, specifically the part about “That feeling of lying wide awake in the middle of the night…” of course I will mention you and your blog and article. Would this be okay?

      • arianezurcher says

        Yes, yes, absolutely. I look forward to seeing it. I must admit, finding you and others has been a game changer, as they say. To feel “a part of” as opposed to feeling “apart from” has made such a difference.

  6. Pingback: A Notebook And Human Capital Management | Life and Ink

  7. Pingback: The Dawning Of A New Day: Teddy’s 4th Grade Year, Part 1 « Life&Ink

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