A Little Bit about Me

A couple of weeks ago, I joined a Facebook group called “Real Husbands of Autism.” It’s curated by a number of top autism bloggers who write from the father’s point of view. Many of the posts are fun and lighthearted, but there are also some really good insights and sharings about life on the spectrum.

Well, this evening, one of the Autism Dads invited all members to revisit the “25 Things About Me” post that they wrote when this was all the rave on Facebook a few years ago. So I dug mine out and updated it a bit. So if you’re wondering who I am, look no further.

1. Marriage: 15 years. 6 kids. 5 cats. 4 houses. A dog. And a bird (who is no longer with us).

2. All six of my kids have an ASD diagnosis.

3. I write an occasional, painfully amateur blog about my family and ASD.

4. Although I’m 51, I still feel like I’m 30.

5. I lived in Tehran during the revolution that ousted the Shah in 1979. Next to my conversion, it remains the most influential event of my life.

6. I was a teenage muleteer. For a high school production of Man of La Mancha. In Tehran. Under martial law. With my brother, Dan. So that I would get an A in Honors English. Because of a tyrannical teacher/director. And his nutty choreographer. And a jaded but lovable music director. And I loved every minute of it.

7. I could never imagine myself as anything other than Catholic—even though I have had a few very tempting opportunities to try.

8. I have the perfect job: I get paid to read the Bible and edit a magazine all about it.

9. I have published 13 books, but I’m convinced that *the* book is still inside of me.

10. I was a member of a Christian covenant community in the Washington, D.C., area for 13 years (1982-1995).

11. After 11 years in Florida, I still think of myself as a Marylander.

12. I am an undying, uncritical fan of Disney World. Don’t mess with the Mouse!

13. I think Ann Arbor is a really cool city. If only it weren’t in Michigan!

14. Before the kids and the autism and all the rest, I used to bike all the time. My goal was to beat my record of a half-century. But I never did. <sigh>

15. When my mother died at the age of 62, her last act was to place her hand on my wife’s pregnant belly and pray a blessing over our first child—her first grandchild.

16. I think Charles Schulz is genius. He is one of my greatest inspirations.

17. There is no better food than homemade biscotti.

18. Before I was diagnosed with celiac disease in 2011, I used to bake my own biscotti.

19. I love to sing. Even if my kids try to cover my mouth when I do.

20. I have the best wife in the world: perceptive, generous, honest, loyal, affectionate, patient. And she doesn’t mind when I sing.

21. In November of 1996, I attended Mass with Pope John Paul II in his private chapel, with only about 25 other people.

22. I do not read as much—or as fast—as I would like.

23. I don’t much like cats. But I love Katie, my cat-loving wife.

24. I want to be buried on the hill at my alma mater, Mount St. Mary’s University in Emmitsburg, MD. That place will always feel like home to me.

25. My all-time favorite quote: 
”Sam turned to Bywater, and so came back up the Hill, as day was ending once more. And he went on, and there was yellow light, and fire within; and the evening meal was ready, and he was expected. And Rose drew him in, and set him in his chair, and put little Elanor upon his lap.
He drew a deep breath. ‘Well, I’m back,’ he said.”
(The last lines of The Lord of the Rings)

Leo Zanchettin, Prosecuting Attorney

VinnyWell, it’s that time of the year again—the beginning of school and its attendant Rite of Introduction. That’s when you get to meet your kids’ teachers and size them up. Are they the type who live solely by the rules and standardized tests? Are they the kind who have high expectations for their students (a good thing), but don’t know how to help their exceptional students meet those expectations (a not so good thing)? Are they the kind who will look at you like you have two heads when you tell them that your child has an autism spectrum disorder? Will they be quick to respond to your e-mails and questions? Or will you have to pry it out of them?

It’s also the season for IEP meetings. Those wonderful exercises in diplomacy, tact, and tongue-biting. Those opportunities to do penance for your past sins and to try mightily to avoid any future sins.

A Successful Pre-Trial Hearing.

I’ve been thinking about IEP meetings a lot recently, because we have a big one coming up in a couple of weeks. It’s for our fourth child, who is entering third grade this year. Last February, we had a pretty tense gathering with his IEP team at school, when we requested that he be tested and formally recognized as being on the autism spectrum. After a ninety-minute “discussion” on the issue, Katie and I prevailed, and the process of testing him was put into motion.

To this day, I don’t know what turned the tables. For the first hour, I was sure we were going to be denied. But then out of nowhere, the assistant principal began passing out consent forms. Katie thinks it had something to do with the fact that I used the word “irresponsible” in describing the administration’s response to my son’s needs, but I’m still not convinced.

Anyway, the school took all the time it could in conducting the tests, so we couldn’t meet before the end of the school year to discuss the test results. So now we are gearing up for the very important get together, when the school will either agree with us and formally designate him as needing ASD services, or they will give some new variation on the standard line: “he seems fine to us.”

I’m not too worried this time. We’ve got enough evidence from the school’s own testing as well as diagnoses from our therapists to win the day. Granted, schools can be pretty clever when it comes to finding a way out of these things. But we’re getting familiar with the tactics and are learning how to counter them. This is, after all, the third time we’ve been down this road.

I Hate It.

But here’s the thing. I hate these meetings. And not primarily because I have to deal with a skeptical, reluctant team of educators and administrators. What I hate more is the fact that I have to convince them. I have to take them by the hand and walk them through our all the aspects of our son’s ASD.

I have to rehearse every “academically relevant” way in which his disorder manifests itself—including the melt downs over homework and the inability to read social cues and the sometimes tragic, sometimes comical things that come from this inability.

I have to become something of an NSA agent taping his conversations and culling through them to find the evidence of his uneven pragmatic language skills.

I have to pore over all of his testing data, highlighting every deficit so that I can show how it relates to his ASD and how it will affect his ability to move through the curriculum.

I have to give special emphasis to his challenges and deficits and defects (God, I hate that word). When a teacher says something like, “But he’s so cute and charming,” I get to agree, but I can’t dwell on his good qualities for too long. I have to get right back to his needs.

In other words, I have to build a case against my own son, sort of like the way a prosecuting attorney would build a case against a criminal. Because the school will hang on to any positive inkling about him and use it to deny him the services he needs.

That’s what I hate.

Because he’s such a good kid. He’s smart. He’s sensitive. He’s energetic. He’s loving and kind. He’s got the brightest light in his eyes and the liveliest spring to his step I’ve ever seen (yes, he’s a toe-walker). Here he is, my own flesh and blood, and I have the singular privilege of telling a group of low-level bureaucrats everything that’s “wrong” with him.

A Smile on My Face and a Pit in My Stomach.

What’s not to hate?

But we do it, as we’ve done for two of our other children. As we’ll likely have to do for two more. We do it because we want them to get the “free and appropriate public education” that is their right by law. We do it because we want them to be given a fair chance to learn and grow and develop and make a positive contribution in a world that can seem so alien to them. We do it because we love them too much to let them or their school think that just squeaking by is good enough.

So there I’ll be in a couple of weeks, patiently and carefully building a case against my own son. I’ll do it with a smile on my face and a pit in my stomach. And I’ll be praying the whole time that I not lose my cool. Because I want what any parent wants: the best for my kid.