There is this little ritual we go through every so often. It happens during one of Evan’s IEP meetings, or one of the other meetings we have in order to update his services. There comes a point when they ask the golden question. “ What are your goals for Evan?”
I’ll never forget the first time that question was asked, years ago, in the first of these meetings. We were sitting around the kitchen table at our old house; his old case manager, a few therapists, my husband Randy and I. We were still reeling from the whiplash of the previous few months, when “you know, he still isn’t talking” turned into “your son has Autism.” And now this room full of strangers wanted me to come up with some goals. I just looked at them. My goals for him? The case manager sat with pen poised, ready to make a permanent record of my hopes and dreams for my barely-two year old son. I feared, in that moment, that I might not reach far enough or high enough; that I was suddenly being asked to put a cap on his future success. I slowly inhaled, looking from face to face. “uhm, well….I guess my goal would be a full scholarship to Harvard.” I remember the barely contained panic in their eyes, as they looked around the room at each other while avoiding my gaze entirely. Someone nervously coughed, someone else rustled some papers. I looked at Randy who shrugged and nodded, silently telling me, “yeah, that’s about right.” Still, everyone else looked concerned. Like they thought, ‘this poor woman, nobody has leveled with her yet.’
“Look,” I said, hoping to clarify my statement. “I get it. I’ve read the books. I know all of the potential worst-case scenarios. I know we are a million miles from here to there. But I’m his mother, and that’s my goal. You can write whatever you need to write in the plan in order to make that happen. But if you want to know the goal, there it is.”
In the years and countless meetings since, most of the major players involved have become accustomed to the Harvard answer as my standard answer. Somewhere along the line, someone suggested a second sentence, something along the lines of “all skills at an age appropriate level.” That works fine, too. And that has gotten us pretty far.
Ever y now and then, though, we get a new psychologist, a new case worker, a new representative from some agency or other. I watch the mild amusement in Evan’s behaviorist Donna’s eyes as she waits for the golden Goals question. When we get to it, she and I look at each other and chuckle; a ‘here we go’ as we initiate the newbie on the team. Every once in a while we get someone that seems to be completely from outer space. Like the paper-pusher who asked me every asinine question on his form regardless of relevance. “Has Evan ever been hospitalized for drug addiction?” Donna and I look at each other, and then back to the questioner. “My son, Evan? The four year old?” I responded. “Yes,” was the ridiculously straightforward answer; not a trace of irony. “No. No, my four year old autistic son has never been hospitalized for drug addiction.” “Is he known to take hallucinogenic or psychotropic drugs?” I give Donna a look that says, ‘is he kidding me with this shit?’ She rolls her eyes and smiles, shaking her head. “No, not to my knowledge. But you never know what he’s up to in the playroom. It’s hard to say, really. Could be shooting smack at the train table for all I know.” He made some notes, then asked a few more softball questions. Then came the best one yet. “Would you say you’re optimistic about Evan’s chances for success?”
Jesus. “What the fuck kind of question is that?” I wanted to shout. I did not. Face clenched in the best smile I could muster, I said, “well, I should hope so, or why would I even be here?” Asshole.
So that’s been the standard run-through so far. But at five years old, Evan is in his last year of preschool. This means it is time to start his transition process. In the world of special needs children, just about every change in schooling requires a year-long transition process. Testing, more testing, meetings, more meetings, all to determine what to do about Kindergarten. And Kindergarten is kind of a big deal. It sets us up for the whole elementary school experience. For any parent of any kid, that is an exciting-yet-scary thing. For us, it’s more like a ‘holy shit’ thing.
Because Evan is, in many ways, fairly functional in comparison to other special-needs kids, he will likely go to some sort of ‘typical’ school setting. This involves ‘typical’ (read: regular) school, school bus, cafeteria. Which is the holy grail of special needs families, really. Everyone talks about going to ‘typical elementary school’ as though it’s the greatest thing ever. For me? Terrifying. Let’s face it. Typical elementary school is a scary, scary place, full of regular kids. Half of those kids are, frankly, little assholes. I know. I have a kid in elementary school. It’s a nice place, but it can be brutal. So in my mind, I’m conjuring up an entirely new list of goals. Sure, Harvard is still on there. But I’m starting to add a few more:
- I’d like him to stop crapping in his pants. Really. It’s a bummer. It’s no good at all. For anyone. And after two years of toilet training I think the fun has worn off for all of us. So, yeah, using a toilet EVERY time is a major goal. Because, honestly, if it isn’t every time, it may as well be never. Trust me.
- I’d like him to tell me when something hurts. “Headache” would be nice. “I stubbed my toe” or “there’s something in my eye” would be awesome. Because, frankly, the guessing games we play while he screams for no apparent reason are just exhausting. And I fear I’m overmedicating him. “Think it’s his eyes? Should I get the Claritin? Maybe a headache. I’ll get some Tylenol.” Maybe that guy last year was right; a trip to rehab could be in his future at this rate.
- A friend. A friend would be cool. Someone to sit with on the bus. Someone to sit next to in the cafeteria. Someone to speak up if there are mean kids on the bus. Because, take it from me, if a kid can’t tell you when he has a headache, he isn’t going to tell you that Jimmy McTwit called him a loser. And every special needs adult that I’ve ever heard speak at any function has claimed that, as a kid, he or she had a friend, or a pack of friends, and that’s what made all of the difference for them. So a friend is key.
Those are this week’s goals. I’ll probably have more before the next meeting. Who knows. These goals, remember, are for the professionals. For their plans and evaluations and paperwork. Our goals? Our goal is usually to just end the day with the same three kids we started with. Some days, that’s the best we can do. Let everyone else deal with the Harvard thing.