The Denver Autism Wheel

Who’s Your Network, Part II

Posted on: January 25, 2011

In a lot of ways, I’m in the same boat with Julie. Both Karl and I work full time jobs. Karl has the added bonus of working a physics degree at the same time. I have a job that allows for flex if there’s a doctor’s appointment or a school conference. Like Julie, I love what I do.

We realized by the time Chris was two-and-a-half that we weren’t going to be able to do everything, and—in a way—that set the stage for some very healthy thinking. Chris needed help I wasn’t trained to provide. I stayed home with the boys until they were in school all day, so I did a lot, but, “Damn it, Jim! I’m a writer, not a doctor!” 

Chris started with speech and occupational therapies at Children’s in Denver, and I got my first exposure to not having all the answers. We spent loads of time driving to and from service providers, worrying that we were ignoring Luke because we spent so much time with Chris, fussing over milestones, tearing our hair over perceived failures…

Then we came to the school years. At the end of Kindergarten, all the kids assembled in the class, and the teacher asked each one (with a microphone in her hand, recording the event for parents who couldn’t attend) what they wanted to be when they grew up. My heart sang when Alex answered (though not into the mic—he still hates the sound of his own voice), “I want to be a writer…a typer.” A writer! He wants to be like his mom! And the teacher smiled an indulgent smile, held the mic to her own lips and told the assembled parents, “He said he wants to be a typewriter.” “AWWWwww,” they all intoned. She couldn’t have known what she took away just like *that*.

First grade was a similar nightmare of incompetence and blanket assumptions. At our second parent/teacher conference, his classroom teacher and SpEd coordinator told us that he was falling behind his classmates, that he would continue to fall farther and farther behind, and that was OK because that’s what happens with kids with autism. “Your job is just to love him,” they said with straight faces.

Like hell.

It was soon after that horrible glimpse into the philosophy of the school district that we started building our network.

I have to say, first, that I wouldn’t be here, and Chris wouldn’t be where he is, without Karl. He has a clarity of perception that I lack, an objectivity and a persistence that gives my erstwhile Frantic Research Junkie Self a direction. We have approached educating both boys with a unity of purpose, and standing together has helped forge what comes next.

There were two calls I made at that time, and I don’t remember which came first. One was to the ARC of Douglas and Arapahoe County. Carol is Chris’ education advocate, and I’m one of her biggest fans. She has an adult son on the Spectrum and had to navigate these same waters once…seriously, she put up some of the high water markers herself! The other was to the Autism Society of Colorado. Betty, whom I quote frequently and whom I count a friend, is also a colleague of Carol’s and also has an adult son on the Spectrum. Armed with these two formidable women and some Wright’s Law books (which you can find on the Recommended page), Karl and I began approaching Chris’ autism in a different way.

I have mentioned before that I appreciate how many autism groups use a puzzle piece as part of their logo. It really is a lot like finding out how the pieces fit together. Carol helped us understand our rights and our power as parents with an IEP. Betty brings with her the experience of having brought several pieces of autism legislation through to becoming Colorado law and knows the ins and outs of how to get things done.

Alex’s second grade teacher, Paulette, was a godsend. She believed that Alex could achieve and expected it of him. It was Alex’s first experience knowing someone outside his immediate family who saw the student with potential, too, not just the autism. She probably saved my sanity.

We found a tutor for Chris who specializes in ABA but tutors him in his school subjects. That emphasis in ABA has brought a reason to the rhyme of why kids learn vocabulary lists, why it’s important to sit patiently while a teacher talks, and why it’s important to write down your own homework assignments and take responsibility for yourself.

And then, there is Autie Mom Julie and all you lovely people: fellow Autie Moms and Dads, caregivers, professionals and compassionate onlookers. We all share our successes and our challenges, our questions and our ideas. We work through the puzzle together.

2 Responses to "Who’s Your Network, Part II"

Hi, here from ICLW. I am glad you are not letting the school tell you that its okay that your child falls behind. I was an attorney representing children with autism and this was such a common issue I addressed- its awful when parents just blindly agree- not realizing that though a school SHOULD have your child’s best interest at heart- they often times don’t. Great post.

Here from ICLW, and I just wanted to say that you and your husband sound like amazing parents. I’m inspired by your dedication and persistence.

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