The Funny Thing About Early Intervention

Maybe the early bird does catch the proverbial worm.

One hears a lot about Early Intervention and the importance of it for young children just diagnosed with autism. My son was diagnosed just around the time he was two years old but he had actually started Early Intervention services a couple of months earlier. Charlie did not talk and was initially said to have a "communication disability" by the St. Paul Public Schools (we were living in Minnesota at the time). He had one hour a week home visits with a special education teacher, a speech therapist, and an occupational therapist each; in the summer, he started going to a special ed classroom instead of the teacher coming to our apartment. The class was taught by kindly, well-meaning staff, but Charlie got zero out of it (he spent most of the time crying and arching his back). By September, we had set up an in-home intensive Applied Behavior Analysis (ABA) program for him.

That first year of Charlie doing ABA was in many ways the most memorable. His therapists were college students and one graduate student (in speech pathology) and they were a very tight, well-coordinated team. Charlie started crying and protesting his way through his sessions and came to watch for each therapist from the front window, standing atop a futon chair. We had weekly team meetings that he delighted in, as if he could hardly wait to show off how much he had learned in the past week.

Of course, things were a bit simpler then. Charlie, while tall for his age, could be tossed in the air, swung in blankets, piggy-backed, and dragged around the apartment in a laundry basket, laughing all the way. His programs were very basic----receptive language, learning to imitate, learning to follow directions, play skills, numbers. He could still be carried, whether for fun on Jim's shoulders or when he'd become upset, we were in a public place, and beating a hasty retreat was the best option.

The home program providers (a branch of the Lovaas agency) had initially talked recovery and as the months passed, and Charlie continued to make great and happy strides in his learning, and was still not able to talk, and was still, well, autistic, the head behaviorist expressed lessening interest in Charlie. When we announced that we had to move back to St. Louis (Jim was a professor there, and had been on leave), the behaviorist strongly suggested that we find someone else to direct Charlie's education. (Our therapists were as distraught as we were about saying good-bye, and almost all of them came to visit us in St. Louis a couple of times.)

Following up on yesterday's post which touched on the "recovery issue": When Charlie was younger, i used sometimes to say that, ok, Charlie had recovered "to the extent that he could." He could speak some by the time he was five and he clearly liked learning: "He's very teachable," every teacher has said. They, and we, attributed this in no small part to that good foundation that Charlie had, those first five therapists who adored him and whom he adored back. (And who at times sighed about the constraints of the ABA program.)

This liking---love---of learning has remained with Charlie.

I've been noting his current struggles, some of which have been fierce and, frankly, more than worrisome. One thing I haven't noted so much is that these tough moments are moments---often seven or 14 minutes out of a whole day. They do seem to come out of nowhere at times and often it seems that some kind of fight-or-flight response is being evoked in Charlie (talk about stress, more so for him than for us---I can tell you how I feel; Charlie cannot). Most of the time, we go about our business of bike-riding, random trips in New Jersey suburbia, adding new cards to Charlie's activity schedule, throwing around a basketball, watching Charlie do his homework, trying to figure out what to put into Charlie's lunchbox, digging through the couch cushions to find some missing worry beads. At school, Charlie is kept very busy with gym at 8.30 (baseball lately), numerous academic programs tailored to his cognitive abilities (adding decimals, lately, and Edmark), and more. He's the most social kid in his little class, and able to focus, good at following directions, and generally catching on quickly.

His teacher thinks this is in large part due to "quality Early Intervention" and we do think that Charlie had this (and that one reason for the "quality" was that it was a lot of fun, for him, the therapists, and us). Generally you hear about Early Intervention being "successful" because---if----a child has "recovered." In Charlie's case, Early Intervention has meant that he's been able to be a student in the public schools for quite some time, while having some tremendous challenges communicating and with his behaviors. Who know, maybe those early years were the reason that Charlie is still with us and that we know how much he can learn, how much he can do. If he hadn't had that early foundation, where might he be now?

And that is, to me, why "Early Intervention" is important. It should be all about giving a child a chance to do his or her best, with "best" defined not as some abstract notion of "recovery," but as setting a child up for as good a life as can be had. For Jim and me, this means a life in the community, living among those who know you well and love you, among family and friends; among those for whom, seven minutes of Very Difficult Moments is a passing whirlwind that, indeed, passes, and is gone.

So: Charlie has those difficult seven minutes.

Charlie has pre-vocational skills, we're told, and not every child in his program does---not every child got the strong and loving foundation in learning that he did.

And I believe the challenge (one of many challenges) is: How to keep building on that foundation and keep it strong, alive, and nurturing?