I really meant to write yesterday, to mark the occasion of Stephen’s ninth birthday.
But I didn’t. I thought about it late last night, and I couldn’t summon up the gumption. It’s funny – I got through Friday the 13th surprisingly smoothly…not that I’m superstitious. But bad luck seems to like me, and I figured that day would attract some seriously bad karma. It didn’t, though – that day turned out okay - at least for me. The kicker is that instead of one day of Friday the 13th-itis, we got a whole WEEKEND of it.
Ugh. I’m actually sighing as I contemplate putting into words what the weekend was like…
Friday evening went fairly well. I went to bed and became instantly comatose as usual. David decided to start reading a book he'd gotten: Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul Offit, and, though I have yet to read it, I know that when he put the book down at 1 a.m., he was feeling literally sick - we were duped, to put it plainly. So much money, time, effort, trauma...and now, to find out that a great deal (if not all) of the biomedical stuff is little more than snake oil is highly troubling to say the least. So with that weighing very heavily on his mind, David wasn't able to feel really perky and "birthday-ish" the next morning.
So the next day, Saturday, we had a party planned to celebrate Kerry’s eleventh birthday (which was actually last Wednesday - yep, our boys were born two years and four days apart) at the McWane Center, the hands-on science museum I mentioned a while back. We had invited about 10 of his friends, and they were all looking forward to a fun time. As far as our family was concerned, none of us really mentioned it, but we were all holding our breath, wondering how Stephen would do. He had enjoyed his time there last month a great deal – so we had some reason to believe this would work out well, and that Kerry would be able to enjoy his day fully. Things started out okay. Stephen seemed happy to be at McWane again, and almost all the kids showed up on time. We moved to the party room en masse and got the boys started with a snack – I even put Stephen at the group table and let him eat some Cheetos with the other kids. In hindsight that act was more for me than anyone else – it helps me to see him in a “normal” setting, even for a few minutes. I could glance at the table and for a brief moment autism wasn’t in the room. It resented being excluded from the party though, because it came back with a vengeance.
Last month at McWane, as I mentioned, we happily discovered that Stephen enjoyed eating a burger and fries in the food court. So, in Kerry’s party room, Stephen started getting a bit antsy. I moved him away from the group table, and asked him what he wanted. “Fies,” was the predictable response. Okay, I thought. He wants fries, and we can deal with that as soon as the food court opens. In fact, with Kerry’s party being at 10:00, we had planned on eating lunch there anyway. So I went to our party coordinator and asked her when the food court was going to open.
“Oh, um…let’s see. March 14th.”
Wait, I'm expecting a time, like, "11:00 a.m." A MONTH from now? Not good. Not good at all.
“March 14th? Umm…why? What…?” I couldn’t even get a sentence out. That sick feeling was building in my stomach.
“Yeah…they’re renovating it. It’s going to be really nice!” she replied in an annoyingly chirpy way.
I’m thinking that it damned well better be nice, because I knew all hell could possibly begin to break loose very soon. I went to David to break the news. It was definitely developing into a problem – Stephen’s “Fies!” demands were getting louder and he was starting to cry. At this point (silly us!) we thought that getting him some McDonalds food would solve the problem. One of the dads at the party got out his iPhone to search for nearby locations. I told the party coordinator that we were going to bring in McDonalds food (which is “against the policy” of the McWane Center) and that the McWane center was going to have to like it. We had an autistic kid expecting one thing and getting another – and in his world that is NOT good. She told me it was fine – that if anyone gave us any trouble to tell them she said it was okay. Thank goodness for chirpy and helpful party coordinators. They’re the salt of the earth, really.
So in the midst of all this I’m trying to pay attention to Kerry, whose party this was, after all. Thankfully a crowd of 10 eleven-year-old boys makes a bit of noise, so he was happily absorbed in that, and eventually in opening presents. A good friend stepped in and grabbed my camera to take pictures so that David and I could figure out how to get Stephen situated. Eventually, presents opened and cake finished, the boys got ready to go into the center to play. David went to load the car, and my parents walked around with Stephen for a while. Then David got Stephen and headed for the parking garage so they could get “fies burger donalds hungry,” bring it back in, and life could go on.
Ha. What fools we mortals are.
After a while, I called David’s cell and could hear Stephen screaming in the background. David said that Stephen headed straight for the food court when they got to that level, and when he saw the huge metal barricade closing it off, he started whining. By the time they got to the closest McDonalds and went through the drive-through, he had progressed to full-scale screaming. So even though he was getting the food he adores, the food court being closed had him completely thrown. McDonalds is our magic cure, our fallback position, our ace-in-the-hole! But not this time. David said that he felt helpless: "If THIS didn't work to calm him down, what hope is there?" By the time they made it back David was a limp dishrag. There’s nothing like an extended period of time in a car with a hysterically screaming kid who won’t/can’t listen to the explanation of what’s going on. It's very difficult to understand those feelings if you haven't been through it. Five minutes feels like a lifetime. You want to scream along with him - and at times, I have, at the top of my lungs. You want to grab someone, something, anything...and make it feel as bad as you feel.
When David and Stephen got back, I was waiting. You could see the tearstains on Stephen's face, and David looked deflated and exhausted. We got Stephen down to the vending area at a table, and he finally calmed down and ate his food. David just sat - in that empty space that I know so well...somewhere between a mental breakdown and wishing you could disappear. I told him that I'd take Stephen and let him try to find a quiet place. That always helps me when I've been through the wringer. We managed to get through the rest of the morning without too much else happening, aside from a few dunks in the open aquariums. I turned my back for a second to tell one of the moms goodbye, and I looked back to see Stephen with his face entirely submerged in the "Alabama gulf." Ah, jeez...
Finally everyone had their fill and we left. Kerry pronounced that it was the best birthday ever, so that was certainly a bright spot. We got home and hoped that the rest of the day would be calm. But...it just wasn’t. It was one of those days when Stephen had something going on that he couldn’t communicate and that I couldn’t figure out – he’d get frustrated with his DVD player or he’d ask again for fries or he’d want something to eat that we didn’t have…and he’d dissolve into tears, run to his bed and throw himself down. When I came in to check on him, he grabbed two handfuls of my hair and pulled, while kicking as hard as he could. David would come to rescue me and help me disentangle Stephen's hands from my hair. Then he’d cry more, and ask me to “push, peese” on his head or hands or legs. This cycle repeated itself over and over. By the time he finally fell asleep that night, I wanted to dig a deep, deep hole and crawl into it forever. David and I just looked at each other. Happy Valentine’s Day.
After a night of sleep, things usually look better. And they did. For a while. Waking up on his birthday was like any other day for Stephen. I went into his room and crawled into his bed with him. He laughed and giggled, and I said, “Today’s your birthday, buddy! You’re nine today.” He laughed and said, “Birt-day.” The morning wasn’t good, though – he began his morning routine as usual, with a yummy nutritious breakfast of a few chips and some water (oy) while he watched some DVDs. Sometimes the discs are so covered with crumbs and fingerprints that the player won't even attempt to read them. So, he was having problems. I went, wiped off the discs, got the visible crumbs out of the player, and tried again. Nothing. I tried another disc. And another. After four discs with no luck, I gritted my teeth and said, "Buddy, it's broken..." He said, "It's bo-kin..." and immediately took off running, crying as he threw himself onto our bed, and then there he was, right back into that cycle of frustration. I told David what had happened, and was already getting ready to go buy another DVD player. David went to the living room and kept fiddling with the thing till he somehow got it working again. He yelled, "It's working!" and so I managed to stop Stephen's tantrum long enough to say, "C'mon...it's working...let's go see." And so, at least for a bit, he seemed like he might be okay.
I left after lunch to pick up the giant birthday cookie and cake (for Kerry and Stephen, respectively) for our family birthday celebration for both the boys that afternoon. Of course, the bakery had the order wrong – they had switched the tickets and spent 10 minutes just looking for my order. You can imagine my surprise when presented with a giant cookie that said, “Happy Birthday Jody!” Then, when they finally gave me the right order, I noticed that Stephen’s cake (of which he ate exactly zero pieces) said “Happy Birthday STEPHIEN.”
Stephien?
When I ordered the cake, I spelled out the boys’ names no less than four times each, because English was not the first language of the person taking the order, so our communication was hampered, so to speak. I even used code words when spelling… “S as in Sam, T as in Tom, E as in Edward…” and on and on. And they still spelled it “Stephien.”
Now, in the big scheme of things, it’s not a big deal. Stephen wouldn’t know. But after all that had happened, I was more than a bit annoyed and refused to pay full price, even after a correction was done (sloppily, I might add). I refused to pay $20 for a cake with misspelled writing, so I complained, and the manager knocked off half the price.
Unbeknownst to me, while I was gone, Stephen had another disagreement with his DVD player, and took off into our bedroom to have yet another meltdown. As I learned later, it was a bad one - a category 5...the kind where you have to restrain arms and legs and try not to get headbutted, and you try to keep the furniture intact. And the DAMNEDEST thing is that you don't know what the hell is WRONG with the kid (aside from autism in general). What set this off? Is he still pissed about the McWane cafeteria? Did the DVD player just not play fast enough? Who knows? And while you wonder, you try to calm him - and it's like trying to calm down a wild animal. I am not degrading my own child when I say that, but it is the most apt description. The only thing he doesn't do is bite - at least not yet. It's incredibly disturbing to witness, and even more horrifying to be part of...
I got home with the cakes just as my parents and aunts were arriving. The mood was less than celebratory, to put it mildly. Stephen couldn’t have cared less if there was cake or ice cream. He never touched a bite. My dear friend and her daughter, who have known us since the boys were babies, came over also, and as always they brightened the mood. I apologized for the sense of tension, but as a good friend does, she understood. Having her there helped me to relax and even enjoy helping Stephen “oh-pen” his many DVDs. We got him two trains and a dozen DVDs – that’s it. But he was happy. We got them all unwrapped and he happily went back to his DVD player while the rest of us talked and had cake. I noticed that David was extremely quiet during the whole party - he was there, but he wasn't...he sat quietly in his chair, lost in thought, not eating anything. After all he'd been through with Stephen those two days, he had pretty much had it. I know the feeling. I'm pretty sure any parent of a child as affected by autism as Stephen is knows that feeling.
Kerry and my friend’s daughter played Rock Band for a while, and slowly the small group filtered out. I felt better for a while, but the good feelings ebbed away, leaving fatigue and what can only be described as shell-shock. David remained as quiet as he had been through the party, and the exhaustion showed on his face.
Stephen was pretty calm for the rest of the evening. Who knows why? Maybe the new DVDs charmed him. Sometimes you just can't explain the changes in his demeanor. The boys went peacefully to bed, and David and I watched TV. There’s a sort of numbness that sets in when you have this sort of chaotic weekend. I could barely think for the slight buzzing noise in my brain. In the back of my mind, and certainly in the front of David's, was the book. David keeps remembering when he first found the book Evidence of Harm by David Kirby. That book set off an alarm in him - and in a lot of other parents. We tried so hard to figure out how to help Stephen, and, as I said, we spent money...lots of it. We had fundraisers, we begged, we pleaded - because we were going to cure him! It's very disheartening to feel that we were suckered. But again...after I read Offit's book I would like to talk about this in a lot more detail. Suffice it to say that the initial reading of this book started off a weekend that went sour quickly.
Looking forward to next year, birthday-wise, I’m thinking that we’ll go all out and do whatever Kerry wants for his 12th birthday. For Stephen’s 10th, maybe we’ll go to McDonalds and get him a burger and fries, stick a candle in the burger, and get him a couple of presents. All the fuss and bother is not worth it – nor is it meaningful to him in any way.
My beautiful son, with his shiny brown hair, angelic face, beautifully shaped lips, and golden-green eyes is nine years old. Last night as I was putting on his diaper and his pajamas, I looked at him as he lay on his bed, knees bent out in that “froggy” position that babies assume when you’re changing them, and saw all the facets of Stephen reflected in his eyes. The love he feels for those who care for him, the laughter that is usually right under the surface, the anger and confusion about a gigantic world that sometimes makes no sense, and that particular strange something that I can only call autism – all of that, staring trustingly up at me as I got him ready for bed…then, a yawn…heavy eyelids…a murmured “nigh-nigh,” and he pulled the sheet up over his head, falling asleep almost instantly. I stood there thinking about the 48 hours we had just spent, and about the days to come. So much uncertainty, as always. I dread days like the ones we’ve just spent, and the unpredictability of it all makes it impossible to prepare. You just have to hang on tight and wait for time to crawl past.
One day someone in a high place will find a cure for this damnable disorder…I can only hope sooner rather than later. We wait with hope that is dampened by the difficulties of this life of ours.
So, a belated happy birthday to my beloved Kerry, joy of my life, who is growing up so fast yet is as loving and compassionate and full of humor as ever. And happy birthday to my baby boy, who in many ways will always be my baby…growing and changing and staying the same. To David - while at times it seems as if this life is surely going to wear us both down, somehow we've kept going. All we can do is keep pushing ahead, looking for opportunites, and hanging on, sometimes by the tiniest thread. To all of you who provide support to me, both virtually and literally - thank you. I love you all.
