…weren’t always good, and tomorrow ain’t as bad as it seems. (Gotta love Billy Joel.)
Yes, I’ve been absent for a while. Has anyone missed me? (Is that crickets I hear?) 🙂 Things have been busy. Knitting socks has turned into a borderline unhealthy addiction. There are days I could keep knitting and skip eating, though right now that wouldn’t be a bad thing. Mixed with this, I had a deadline to get my Golden Heart entry ready, and I got it in but just by the skin of my teeth. Now to put a final polish on “Comfort Zone” before I submit to an agent I met in NJ. I’m dying to work with her, but I want to make sure I put my absolutely best foot forward, and working on the GH entry, I found some areas of the plot I need to tweak further in. I need to put the knitting down and plant BIC, HOK. (Butt in chair, hands on keys.)
So last night there was nothing on TV and John flipped the channels for a while, where we landed on “St. Elsewhere”. I haven’t seen that show in years, and actually I wasn’t allowed to watch the early shows because it came on after my “bedtime”. For a little while last night, I got to see what David Morse and Howie Mandel looked like with hair. Honestly, they’re just as good-looking with hair as without, and hair or not, the talent is still there. We also thought it was amusing that Denzel Washington hasn’t done TV since St. Elsewhere, but he didn’t have to. Talk about a springboard to fame! 🙂
We must’ve caught a show late in the series run, because Dr. Chandler (DW) was just leaving his career behind, and Boomer and Fiskus were also on their way out. I’m dying to know if we’re close to the very last show, because I did see that one first-run. At the time, I had no idea what autism was all about because nobody talked about it. (Spoiler alert: if you haven’t seen the last show, move on. Otherwise, here’s a reminder: the last episode showed that the entire series was all a product of the imagination of Dr. Westphall’s autistic son Tommy.)
Tuesday was the 10th anniversary of Alex’s diagnosis, and as odd as it sounds, that was one of the proudest days of my life. By November 1999, we’d gone through evaluations, exams, diagnostics, and even a quack neurologist; we knew he had a speech delay but there was also a possibility of autism. All we needed was an official diagnosis to send Alex to specialized school and start working on reversing the problem. It never occurred to me that this was a life sentence we were asking for, so I walked into December 1, 1999 blissfully unaware of what was ahead.
Now, one other thing. Ryan had been diagnosed with hip dysplasia, so I was familiar with the ride from Staten Island to the orthopedist on Atlantic Avenue in Brooklyn, and truth be told, I hated that trip. HATED it. I could not think of anything I liked worse than driving the Gowanus, and now that I live in the Philly area, I can honestly say I’d rather ride a bike down the Schuylkill Expressway at 5 p.m. than drive a car on the Gowanus ever. It’s that bad. There were nights I’d pray for a safe trip, forgetting that the orthopedist could very well ask for more surgery (and that actually did happen later on, but I’m going off-track here).
The first pediatric neurologist (whose name I’ve forgotten, or I probably just blocked it out of my memory for my own mental safety) asked for a CT scan of Alex’s brain, but to put a very active 2 year old under sedation would require a horseload of tranquilizers, and he wanted no part of it. I tried several times to put him in 4-point wrestling holds to syringe the sedatives into his mouth, with no success. Finally the quack—uh, the neurologist prescribed the tranqs in suppository form. Six of them. At one time. I effing think NOT. I went back to the insurance company and said, “Give me someone else. I’ll go anywhere.” And they said, “How about this guy in Brooklyn?” So I took the name and number and called the neuro in Brooklyn.
The new neurologist was booked up; the next available appointment was December 28th. All well and good if we weren’t looking at “a day lost is an opportunity lost”, so I asked if there were any openings, could she call me. She said, “As a matter of fact, we had a cancellation today. Can you be here at 3?” It was 1:00 and I was in my sweats and a ratty t-shirt (white with blue flowers; I’ve since thrown it out), the kids were a mess and we’d just finished lunch so the house was a mess too. I drew a deep breath and said, “We’ll be there.” I took the address and froze: Atlantic Avenue. Oh shit. I didn’t even have time to pray for a safe trip; I had to get the boys and me ready, in full winter regalia (because it was about 30 degrees outside), to get in the car and drive to Brooklyn, over the Gowanus, to Atlantic Avenue. Probably the last thing in the world I wanted to do, but if I was going to get Alex his diagnosis so he could start school and turn this progressive disaster around, it was what I had to do.
And I did it.
Driving through afternoon traffic like a live-action game of “Frogger”, we got to the office with 10 minutes to spare. I peeled the boys out of their winter coats and kept them on my lap so no one saw I was wearing sweat pants in public. The doctor called us in, and in 10 minutes of talking to both me and Alex, he said, “Your son has autism.” I still think it was the most absurd moment in my life that I was relieved. Finally our enemy had a name; we knew what we were fighting against. It was like coming out of the fog and seeing a Star-Wars-type monster facing us, but at least we knew where the rockets were coming from.
I drove home in rushhour traffic, proud of myself for going toe-to-toe with my fears so I could get help for my son. We’d have lost 4 weeks of progress if we’d waited for the appointment on the 28th, and when you’re dealing with autism and your child is already 3 years old and not getting EI services, every minute counts. Sadly, I was still blissfully unaware that this was just the first of the many, many demons we had to face, probably for the rest of our lives unless someone comes up with an actual, bona fide cure for autism. (She says with hands clasped in prayer.)
By the way, when you see me say “we”, that’s actually me. I won’t give my ex credit for any of this because he didn’t do ANY of the legwork involved. He did go on one school visit before Alex enrolled, but only because he wanted a day off from work. All the exams, evals, and appointments, that was all me. Neener, neener. 😉
So here we are now. Alex is 13 and over 6 feet tall; a far cry from the sweet, silent little green-eyed munchkin that walked into the doctor’s office ten years ago last Tuesday. He talks, sings, writes, does math, fights me on homework and bickers with his brother. Mostly all typical 13-year-old stuff unless you know that developmentally, he’s about 6. I love him just as much now as I did then, but I worry about him more. The future isn’t as far away as it was then. I want to know what’s ahead for him. I want to be sure he’ll be okay when I’m not here. I doubt there’s a mother of an autistic child who doesn’t think she has to live forever to secure her child’s future. It’s scary stuff. I know some kids who’ll be okay; they have focus areas they enjoy where they can find gainful employment. Given Alex’s love of movies, I’m sure he’ll have no problem working at Blockbuster (if they still exist in 10 years; “on demand” movies could phase them out). The world will change so much, and I’m afraid he may not be able to change fast enough to keep up with it. My greatest fear is that he will get left behind, and he’s such a sweet, kind, loving person, it wouldn’t be fair to the world to miss out on knowing someone like him.
If Tommy Westphall can imagine all of St. Elsewhere, what kind of world does Alex imagine? I may never know, but I bet it’s a wonderful place.