Monday, August 17, 2009

Starting Somewhere

Well, this is where it begins--for this blog, anyway! My son Ben was diagnosed with Autism about a month ago. It was a late diagnosis, really; he's six years old and moving into first grade. We had originally thought he had a serious ADHD problem when every day of preschool included some incident of running out of the classroom into the parking lot or hall, punching another child in the nose, and/or any number of assorted problem behaviors. Unpleasant mothers of other preschool children glared unkindly at me every day, wondering what kind of mother I was to be raising such a terrible child. I wished plagues of locusts upon those "perfect" moms with their "perfect" little children.

Last year, kindergarten, we noticed that Ben couldn't stand to have other kids in his "space." He didn't play with the other children at recess, couldn't tolerate changes to the normal school routine (for example, picture day or an assembly), and continued to exhibit impulsive, destructive behaviors. We started looking at the possibility of an autism spectrum disorder by mid-year, thinking that since Ben had pretty good language skills, he might be facing Asperger's Disorder. By the end of kindergarten, we had gotten the school psychologist involved who completed his testing on the very last day of school, and preliminary results supported our suspicions.

This summer we finally sought out the help of a Child and Adolescent Psychiatrist who, after an extensive clinical interview, told us that Ben met 9 of the 12 DSM-IV criteria for Autism (6 are necessary for the diagnosis). And there it is. Our son is Autistic.

Most people are given this news when their child is two or three years old. The "system" failed us, I guess. Ben missed all his developmental milestones, but our pediatricians just said, "Well, he's a little behind, but some kids just do things at their own pace." The preschool teacher might have suggested that we ask our pediatrician about autism, but state laws prohibited her from saying anything about Ben having a problem of any kind. And I thought Autism meant a child who spends all day quietly rocking, never speaking a word, resisting all human contact.

Turns out, the faces of Autism are as varied as stars in the sky. Some kids lack all language; others face serious social deficits but never seem to stop talking. Some have academic and intellectual problems; others excel in certain areas beyond what any of their peers can do. Ben speaks--constantly--but he isn't necessarily communicating. He lacks an ability to connect with others. He needs routine and order to feel comfortable, and discomfort is manifested as impulsivity.

So here comes first grade. I've been meeting with the "team" at school to get an IEP in place, and the psychiatrist has put Ben on a medication that seems to control his impulsivity. It also has the unfortunate side-effect of putting him to sleep, which obviously won't work in school. And school starts on Thursday. Today is Monday.

This blog is partly for me--to mark progress, remember milestones, and celebrate Ben for the unique person that he is. It is also for you, whoever you are. Maybe you are one of my relatives, and you want to keep track of Ben's progress. Maybe you are a friend and you want to see what's new in our continuing saga. Maybe you don't know me at all, and either have an Autistic child or are just curious about what Autism looks like. Whoever you are, welcome. You keep reading; I'll keep writing, and we'll just take this "adventure" one day at a time.


  1. Heather and Chris,
    You are awesome parents with 4 wonderful children. I wish that we lived closer so that we could be together more, but I want you to know that you are in my thoughts and prayers. If you ever need "first grade" advice from an old first grade teacher just let me know! Love, Trena

  2. You guys are so blessed with all 4 beautiful children. With all your trials, you seem to keep it together. We are always here for you guys. You have done an excellent job raising your children. Thank you for being who you are and for what you stand for. Love, The Bartons

  3. Thanks for sharing your story. I work at Kids On The Move in Orem and we serve as the Early Intervention provider for kids 0-3 in Alpine School District. So many of the 1400 kids we serve each year are dealing with these Austism spectrum disorders! Of course, many of our Home Visits are to help families like yours. We are currently considering expanding our services to assist children ages 3-5 who are somewhat lost in the gap of services between Early Intervention services and the School District's or other services. I just wanted to let you know that we have a Family Resource Library with a ton of resources including books on specific disorders or Autism-related issues. If you'd ever like to come by and look through our specialized collection or borrow a book, let me know. I'll check in with the blog and be interested to hear your experiences. My thoughts are with you and so many other families struggling with these issues. Hang in there! Sounds like you are taking it all in wisely and learning all you can do to help your kids. Way to go!

  4. Heather-
    What a beautiful post. You are an amazing mother! Ben is so lucky to have you and you are so lucky to have him. He is so stinkin' cute! Thank you for allowing us to share this journey with you in a small way. I LOVE YOU!

  5. Thank you, everyone, for your support! I don't deserve the praise, but I really appreciate it. Scott, thank you for making me aware of the resources you have available; I will certainly take advantage of your library.