Great Expectations Part II

I've discussed the issue of expectations before, and it light of recent events, I thought that it might be a good idea to revisit the issue.

The first event worth reflecting on involved a shopping trip to BJ's Wholesale. While there, a young man was working at the checkout counter who seemed, well, oddly familiar. His mannerisms, his way of speaking, his physical gesturing all reminded me of someone that I was sure I had met before. As I moved down the line I realized that he was a young adult with Autism (don't ask how I know for sure, you just start to notice these things when you're tuned into it all the time). When it was finally my turn in line, we had the following conversation:

Employee: Hello sir, how are you doing?

Me: I'm well thank you, and how are you?

Now at this point, I will save you all the next ten minutes of unilateral conversation, which involved, among other things - Call of Duty, playing Call of Duty, Call of Duty blogs, Call of Duty cheat codes, Call of Duty miscellany, etc - but more importantly, the following statement:

Employee: To be honest, I don't like to stand on my feet all day, but other than that, all the people here are really nice and fun and this job gives me the money and free time I need to play...[guess which game he likes to play in his free time - it starts with a C and ends with all of Duty].

When I got home I told Amy what a relief it was to have met this young man, because he seemed to be living a happy and fulfilling (and most importantly normative) adult life. I jokingly told her that I couldn't see any sign of Pull-Ups sticking out of his pants, so clearly he had mastered potty training at some point between 6 and 18, which is actually great news, because we always worry about that.

Joking aside, those three terms have become my mantra in terms of expectations for Mowgli's life:

Happy

Fulfilled

Normative (in the social-emotional sense of the term - i.e. not punching himself in the head when he gets angry, or introducing himself by smelling you or pinching your stomach)

This issue also came up with the school district, which sent home a neurotypical report card a few weeks ago with such hilarious zingers as "Can't complete the alphabet" and "Reading Comprehension - F". The teacher insists that the school requires it, but that no one really takes it seriously (can you imagine someone telling you not to take a something that outlines your child's absolute failure seriously?). In the meantime, his teacher continues to tell us how he's doing academically, as does most of the administrative staff (in defense of the therapists - OT/PT/Speech - they seem to be the only parties in all this that are accurately measuring what's important). At a meeting with the school psychologist last week, Amy drove home the point, and I echoed it, that academics, in the traditional sense, are quite frankly meaningless to us. In the end, we would be okay if Mowgli was totally illiterate, as long as we got to trade that for the promise that his life would be happy, fulfilling, and normative. This message has not been well-received, predominantly because the people we are talking to don't seem smart enough to understand that we aren't speaking literally, but rather we are simply trying to make a point about expectations, and the fact that we all need to be establishing appropriate and reasonable goals for Mowgli. Eventually they'll get it, because Amy and I are resilient enough to compel them to act the way we want them to, but it is obvious to me that most educators in this community are so wrapped up in their own sick, twisted, mandated standards, that they are incapable of realizing how ridiculous it is to give an Autistic kindergartner a neurotypical report card.

One of the most important aspects in understanding autism is to first establish appropriate expectations of that person. At its core, it's an easy task, because human are social creatures and we instinctively do it all the time. The hard part is establishing a different set of social and emotional rules for generating those expectations.

When someone asks "Is he potty trained yet?" and I respond "Not entirely, no." the response is usually one of concern. For most people, a 6 year old child that isn't potty trained doesn't meet the expectations they've established for neurotypical children. Yet we were ecstatic a few weeks ago when Mowgli, of his own volition, walked into the bathroom, closed the door, and pooped in his diaper. This is incredible progress, but only because our expectation is that we would like to not have to wipe his butt with a wet wipe on his way out the door to the Senior prom. Sound ridiculous? Sure, but for us it is the expectation we have established for him that we know can realistically be met.

When people hear Mowgli's limited speech again the response is one of concern, because again, it violates the standard expectation of a 6 year old. For the better part of the last three years I have come home at approximately the same time, and have had to essentially compel Mowgli to acknowledge my presence, which even then amounted to no more then:

Me: Hi Mowgli!

Mowgli: Hi Mowgli!

Me: How are you?

Mowgli: How are you?

This type of echoing is standard practice for autistic children and is Mowgli's normal response to conversations that he is incapable of maintaining. Then, a few nights ago, having completely eliminated any expectation of acknowledgement, I turned the corner and saw Mowgli, who made immediate eye contact and said:

Hello, Daddy.

Two words and three seconds of eye contact. All of it unprompted. It was the proudest moment I've ever had as a parent. I was overwhelmed with pride. I felt the same way I did when I completed my first 1/2 marathon, because I knew that it took just as much effort and training and guts for Mowgli to do what he had just done, as it did for me to run that silly race.

He did it again when I picked him up from Saturday Clubhouse, and I was bragging to everyone at UCP like I was Neil Armstrong's dad "We landed on the moon!". He hasn't done it since, but I don't feel bad about that. I know it's in there, somewhere deep inside, and I know that when he's able to put it all together, we won't have to worry anymore, because he'll have met our expectations.

Happy. Fulfilled. Normative.