I love this photo. Because, really, how often do you see a guy riding a three-wheeled yellow-green motorcycle, with a Ford Mustang in his hands and mouth, all the while wearing emergency-vehicle-themed pajamas?
Of course this could happen on any given night at my house, but that’s really not the point. The point is that I kinda love this photo.
Finn seemed to be loving life this week as well. One really cool thing that I have noticed lately is that we are now able to bargain with Finn, and he often consents to the bargains. Of course, the transactions are pretty simple (“If you eat three bites of pasta, then you can have another cheese stick”), but it still feels like the beginning of something. Because if Finn understands that good behavior can yield positive results, then he should also soon realize that bad behavior can lead to unwanted results.
Surely that must be the first step in impulse control.
One area where Finn needs to exercise a bit more impulse control is with FaceTime, the video-chat feature on his iPad. Now that he knows that the feature exists, he can spend hours calling his grandparents and other friends, giggling uncontrollably once they appear and start talking to him, and then inexplicably ending the call and getting really, really upset because his grandpa, for instance, is no longer on his iPad. Then he starts the process all over again.
Something is driving him to end the calls, even though he is distraught once the call is over, but I don’t understand where the impulse arises. Maybe it is just a control thing. Maybe he needs to test the button to assure that it really will end the call. Whatever the cause might be, the pattern makes me grateful that so many people in Finn’s life have the patience to deal with being called, and hung up on, several times over the course of an hour. If someone else’s kid did that to me, I would probably boycott his calls altogether.
So, I did it. For absolutely no good reason at all, I bought a little 2-seater convertible. As you can tell from this picture, I think Finn likes it even more than I do. Every time we go out to the garage, Finn just has to touch the car. It’s kinda cool, actually, because it confirms that the kid has good taste.
Right after I bought the car, I took a little drive around the Palos Verdes peninsula. The sun was setting, the sky was a brilliant shade of red, I could see two islands off in the distance, and a fleet of sailboats were making there way back to King Harbor. The temperature was in the mid 60’s and just the right amount of heat was coming up through the footwells to keep me cozy. The road down there has crazy curves (one section experiences constant land movement) and traffic was light. Yep - it was damned cool.
So while this is clearly the silliest, most frivolous thing I have bought all weekend long, I still really like it.
Speaking of silliness, Finn has become quite the contortionist in his ongoing efforts to access the kitchen sink.
I am not quite sure why he approaches it this way, but whenever I see him like this it takes every bit of self-restraint I have to avoid placing him firmly on the ground where he belongs. I guess he is really good at balancing himself, but I really hate it. I suppose this is yet another part of becoming a parent - watching your kids do things that seem dangerous or foolish and learning to live with it, at least some of the time.
I know I should devote this time and space to Finn and his accomplishments this week, but my thoughts are in a completely different place.
Instead of thinking about Finn’s fascination with caterpillars, or his discovery of Face Time video calling on his iPad (he called his aunt and grandparents about a dozen times this afternoon), or even the nasty little cold that he has had most of the week, my thoughts are consumed by little, frivolous, convertible sports cars, preferably red.
Before Finn was born, I had a candy-apple red Miata, which I kind of adored. It wasn’t the fastest or the most stylish car, but is was fun and it was mine. When we found out that we were going to have a kid, I decided to get a more practical car. So I got a four-door hatchback, and eventually got around to selling the Miata, despite Tina’s objections.
I should have listened to my wife, because I really miss having a convertible. So I have decided to buy another one, and I saw a great little two-seater while driving home on Saturday. If it were not a little overpriced, I might have already bought it, but since the price wasn’t exactly right now I am in research mode. It is possible that a week from now I will have a totally frivolous, totally unnecessary car. And I cannot wait.
Finn seemed to think the convertible was damned cool, and as long as he approves I think I am in good shape. In fact, I really love the idea of driving in my 2-seater with Finn in the seat next to me, except I worry that he might grab the gear shift (and I worry that Tina might think that it is a colossally stupid idea).
Finn seemed to think that a lot of things were pretty cool this week, despite having the grossest, runniest nose I have seen in a while. He was so interested in the caterpillar on our porch that we could barely keep him from inadvertently killing it. Similarly, I have never been able to interest him in hearing his grandparents’ voices on the telephone, but video-chatting with them is the coolest thing ever to him. He just finds it endlessly entertaining.
I find it fascinating for a different reason. When I was a kid, we were led to believe that the future would hold many, many technological breakthroughs, including jet packs, vacationing on the moon, flying cars, and video-calling. Just how many of those have come to pass? Exactly one.
Video calls are cool, but let’s be real here. I want my jet pack. I’ll take mine in red.
I am generally a very cautious person. I think things through carefully. I don’t make rash decisions. I am good about not getting too excited, and I try (with somewhat less success) not to get too down as well.
But right now I am pretty excited about possibility of treatments for AS. I just have this gut feeling that Finn’s life will improve remarkably in 2012. Frankly, the feeling scares the hell out of me, because I don’t know what I will feel if I am wrong. That’s not exactly true. Honestly, I don’t know how I will deal with the disappointment if 2012 passes without a breakthrough or significant treatment.
So I keep trying to lessen my expectations, to temper my feelings, and to kill my hope, all in an effort to avoid despair and disappointment. But it isn’t really working. My hope, at least this time, isn’t giving up the fight all that easily. I guess I am okay with that. My inner Andy Dufresne keeps telling me that hope is a good thing.
I think he is right.
In other news, Finn enjoyed his Christmas in Louisiana. He had fun with his American grandparents, he really liked having unrestricted access to the television (he saw “Snoopy Come Home” at least a dozen times), and he seemed to enjoy exploring my parents’ home. His exploration of the house led to many discoveries, including the realization that he is now tall enough to turn on most faucets without assistance, and the understanding of how power plugs work (which scares the living hell out of me, since we can no longer unplug things and just tell Finn that they don’t work anymore).
I learned a few things as well. For instance, I learned the following:
- you might think that stickers will easily come off of airplane windows, but let me tell you that they will not. I don’t know if it is the moisture, the pressure change, or the temperature differentials, but those damned things become permanently affixed to airplane windows sometime during the landing process. I still feel guilty about the mess we made of one window on our flight into Shreveport.
- flights are much easier if there is no one in the rows immediately around ours. That way Finn can generally root around without disturbing anyone, which is really, really, fantastic.
- sometimes pilots get spooked by heavy fog and end up aborting landing attempts. When that happens, my wife loses all confidence in the pilot and I end up loosing all circulation in the hand that is closest to my wife. Funny how those things work.
Anyway, the time in Louisiana was good, but we are all happy to be back home.
Happy 2012! Let’s hope that this year lives up to its promise and justifies my hope.
I am feeling a bit lazy this Christmas Sunday, so rather than writing something new I have decided to post a link to an article that I recently wrote for the Foundation for Angelman Syndrome Therapeutics (FAST).
Merry Christmas everyone, and let’s do it all again in 2012.
Finn’s bedtime ritual is very consistent and usually very uneventful. We take Finn to his room (while singing a bastardized version of “Goodnight Sweetheart” which we call “Goodnight Finn!”), talk about the day, get him into bed, and once he is sound asleep Tina goes back into the room and turns off the nightlight. The routine is neither exciting nor dramatic.
Until tonight.
Tonight, when Tina went back into his room, Finn started screaming. I don’t know if he has seen her yet, but something is bothering him, and she has been stuck in there (presumably behind the rocking chair) for at least 20 minutes now. I would go in to try to save her, but that would only make things worse. Because if he sees, us, if he knows that we are in the room, then there is no way that the boy will fall asleep anytime soon.
And considering that he woke up before 5:00AM this morning, we really need him to get some rest.
This morning was kind of funny as well, if only because it made me realize much I have grown to accept because of Finn. At 6:00AM, all three of us were in the bed. Finn’s overly active feet were in the direct vicinity of my face, kicking away while I tried to both protect myself and not let him see my reaction to the constant beating. In fact, Tina and I were both being as quiet and still as possible, because interacting with Finn would only wake him up more, and we continued to hope, despite all evidence to the contrary, that Finn might go back to sleep.
While this was all going on, and even thought it was a very cold morning (by Southern California standards), the ceiling fan was on because, well, that’s the way Finn likes things. So in addition to not reacting to constant punishment and abuse that my face was taking, I was also trying to get more of my body under the blanket without letting Finn notice my movements. While dealing with the generally Arctic conditions, we were also listening to some awful radio station playing Christmas songs performed by Mr. and Mrs. Bob Hope because, well, that was the radio station Finn chose.
So I was frigid cold, being kicked in the face, and listening to Bob Hope and his wife sing “swinging” versions of Christmas carols at the Beverly Hills Hotel in the 1950’s all in the hope that Finn might, just might, fall asleep for an additional few minutes.
He didn’t.
The bedroom session ended when Finn demanded his iPad and further demanded that we watch the movie “Babe” for the 265th time. ”That’ll do, piggy.”
Back in the present, Tina finally escaped Finn’s room. She is massaging her calves because they got tight from squatting behind the rocking chair for half an hour. We don’t know what spooked Finn or why is crying out every few minutes, but I sure hope he settles down a bit. But if he doesn’t, we will get through it somehow, because that is what you do when you are a parent. You adapt to your kids. I just never expected to adapt to Angelman Syndrome, I guess.
Sorry about missing last week - Tina and I were in Chicago and I never found the time to write a blog entry. We were there for the FAST (i.e., Cure Angelman) Gala, which was very cool but, for me, very different from last year. I would tell you all about it, but I just wrote another piece about the experience for the FAST newsletter, so I will wait and link to that once it is published.
Another bit of cool news is that Finn was on national television last night. It was only for about two seconds, but that is still two seconds longer than I have been on national TV since college. You can find the video here (at around the 2:30 mark).
This weekend was all about Christmas, though. It started with our now-annual trip to home depot to buy a tree. The trip is something of an ordeal, primarily because Tina and I have very different ways of buying anything, but especially Christmas trees.
Tina has a very specific and precise idea of what the tree should look like.
I am happy as long as the thing doesn’t look like Charlie Brown’s Christmas tree.
Tina likes to look at a number of trees from all angles to be sure to find one that is exactly right for our living room.
I am happy as long as the thing doesn’t look like Charlie Brown’s Christmas tree.
Tina worries that the tree is too old, or too dry, or too short.
I am happy as long as the thing doesn’t look like Charlie Brown’s Christmas tree.
(Actually, now that I see it again, it might be kind of awesome to have that tree in my living room. I may have to change tactics next December. Oh, and for the record, “A Charlie Brown Christmas” may be my favorite Christmas show, but it is not my favorite Charlie Brown movie. That honor goes to “Snoopy Come Home.” I still tear up even thinking about the theme song from that show).
Anyway, after we got our Christmas tree and managed to get it home without having it roll off the top of Tina’s car, we basically hopped right back in the car and went down to a ridiculous neighborhood in Torrance that features the most elaborate Christmas decorations that I have ever seen concentrated in one area. I was too busy gawking to get photos of the really decked-out houses, but this one is relatively typical for the neighborhood.
The neighborhood is so notorious that people who live there sell candy, food, and drinks to the gawkers, the local police set up signs for traffic and block certain entrances and exits, and tour busses roll through the neighborhood once dusk falls. Just to give you another sense of it all, the Santa Clause photo above was also taken in front of a house in that neighborhood.
Finn loved it all, and sometimes he couldn’t seem to decide what he wanted to see next. It is so cool seeing the excitement and wonder in his eyes - nothing kills my skepticism like being around Finn during the holidays.
Finally, today’s Christmas excursion was going to Manhattan Beach for their Holiday Fireworks. I am convinced that they schedule their fireworks in December because they decided that having them on July 4th was too much of a pain in the ass; in some ways the town is really insular that way. In any event, it is a great time for kids, especially because they can start the fireworks at 7:00, rather than at 9:00 or 9:30 as during the summer.
Finn adored the fireworks. He loved watching their reflections in the houses along the beach. He loved the crowds and the toy light saber that Tina bought him as we walked along the beach. He loved the Hawaiian bread that our friends had at their holiday party earlier in the day (so much so that, after eating around 10 rolls, the boy looked positively pregnant). The only thing that he didn’t love was when the fireworks ended, but luckily we were able to reveal the light saber to distract him during the walk back to the car.
Overall it was a great weekend, mainly because Finn loved it all so much. As long as Finn is happy, I am happy.
Oh, and for those of you who were wondering about the wine, it is the 2008 Firefly Ridge Merlot from California’s central coast. I think it is well worth a try.
Some weeks this blog post seems to write itself. I sit down at my computer and my fingers dance across the keyboard. Not so much this week, so instead I will just string together a list of disjointed thoughts, and hope that the sum is greater than its parts.
First, Finn had a great weekend. He enjoyed Thanksgiving more than any pilgrim ever has. Even though the meal was excellent, he didn’t really give a crap about most of the food (other than the grapes and the pumpkin pie with hand-whipped cream, which he could have eaten for days). But he loved the company, especially the other little kids who were around, and he loved exploring a new environment. This kid is the embodiment of party animal.
Next, I think I have found a contender for the world’s best sub-$10 wine. I found it at Von’s of all places, but both Tina and I felt that it was worth far more than its price. I will still continue the search, but right now this one is at the top of the list.
Also, a friend reminded me today that almost anything is possible with determination and the right attitude. Over the last several months his wife gave birth to their second child, they bought and completely renovated their home, he continued to operate his own business, and he and his wife dealt with all the struggles of raising a 4 year old with Angelman Syndrome. That is a full plate.
I finally got to see the end of the movie “Babe” with Finn (usually, I am only around for the beginning or middle of the film). As much as I hate to admit it, that is a damned touching little flick. After seeing the end I wanted to find the cast and crew and say, “That’ll do, cast and crew. That’ll do.”
Speaking of movies, “The Descendants” should have been better and funnier. It was the first movie that I have seen in a theatre in many months, and I really wanted to love it. Instead, I kept looking at my watch wondering how much longer I needed to wait to see Tina and Finn.
Finally, since it is Thanksgiving weekend, I could easily write a list of all the things for which I am thankful. That list would include my in-laws, who take such good care of Finn. It would include all of the people whom I have met because of Finn. It would include all the little things that we take for granted, like shelter and food and a job. It would most definitely include Finn, who makes me so happy sometimes that I just want to dance.
But, this year, there is one thing (and only one thing) that I am even more thankful for than my precious little son.
I am so very thankful for Tina. No one else has ever put up with all of my flaws and inconsistencies the way that she has. Even though I can be moody, or pessimistic, or pouty, or just damned irrational, she always stands by my side, and she always seems to see the best in me. She has taught me patience, and caring, and compromise, and love. I wouldn’t be half the man I am today had I not met her. In fact, I just wouldn’t be myself without her.
So this one is for you, Tina. Take a bow.
One of my oldest and best friends recently told me that, after years of denials and protestations, he and his wife have decided to have a child and she is now pregnant. I always get a little scared when one of our friends announces a pregnancy, because I know that Tina still pines for another child and I just cannot bring myself to pull the trigger. I also get a little jealous because I know that other kids won’t face the same challenges that inhibit Finn. But, overall, I am really happy for my friend. His journey through life is about to get much more complicated, emotional, terrifying, and joyous, and I bet that he wouldn’t have it any other way.
Finn has also been a bit complicated, emotional, and joyous this week. (Luckily, though, he is not terrifying, but boy can he be annoying. More on that in a second.) He is growing complicated and emotional because his moods no longer abide by the simple cause and effect rules that seemed to govern his disposition until very recently. In other words, sometimes we cannot pinpoint a cause for his feelings, and it makes things interesting. Even when we do figure it out, the cause is so remote that we find it hard to determine how best to react.
For instance, Finn became quite angry with me this morning when I told him not to put his finger in an electrical outlet. He gave me a prodigious scratch across my cheek and began screaming (not really terrifying, but truly freaking annoying). I frankly couldn’t understand why he was so upset; things like that usually don’t phase him. Later, though, Tina mentioned that she had a difficult time with him earlier in the morning, so much so that she spent much of the time telling him not to do many different things. The more she said no, the more angry and rebellious Finn became, and I guess his sensitivity to the word “no” stuck with him later in the day.
For me, this is a whole new layer of complication. Now he not only reacts to what I might say or do, but also to what has come before. I guess we just added a new step to the dance.
Before this all comes across as too negative, I should share some of the joy that Finn brought as well. Basically, the kid really likes communicating with us, and he loves using his PODD book to comment on his day and things he has seen. His new favorite thing is telling us about the Christmas lights that have (already) begun sprouting up in our neighborhood. He wants to be damned sure that we know about the lights as well as he does. He still communicates by gesture, sound, and signs as much as with the PODD book, but that’s okay. I just want him to feel heard and understood, and I want him to use all methods available to him.
In fact, I continue to learn much about non-verbal communication from Finn. Learning to read his body language, facial expressions, and gestures has made me realize that we all communicate in non-verbal ways, but I am not particularly adept at reading other’s cues. But the more I am around Finn, the more I learn.
Tonight’s dinner reminded me that I really, really need to do more with Finn and his PODD book. I really don’t use it with him all that much, but even without sufficient practice and modeling he has become more than able to communicate with the device.
Lately, he has begin asking us questions with the book. For instance, just before dinner one of our neighbors came by to ask us a question. As soon as we sat down to eat, Finn navigated to the “neighbors” icon in the book and clearly wanted us to explain why the neighbor came by.
Finn has also learned to be both pushy and polite when communicating with us. During dinner, Finn desperately wanted more cheese. Apparently I was a bit slow, because he told me “Hurry Up!” and then navigated to “Please.” Initially, I wasn’t all that interested in getting him more cheddar, but I find it hard to turn him down when he is so thoughtful and well-mannered.
So it seems that the only thing that is really holding Finn back in the PODD department is a lack of modeling from me and the other adults in his life. So I pledge to use it more and be more patient with Finn while he uses it, especially since he often just uses it to get us to talk about his Opa Ebi (who is a fine person, but the conversation gets somewhat repetitive).
Another thing that became apparent this week is that we still need to teach Finn a healthy respect for dogs. He is fearless around all dogs, no matter how large and aggressive they may be, and his greatest joy in life seems to be getting licked in the face by dogs of all sizes and temperaments. We always talk to dog owners before letting Finn get close, but I still wish that the little guy used some caution around canines.
But, then again, who am I kidding? The only time the kid shows real restraint is around uncertain terrain or if we try to get him to eat something other than cheese, cereal, cookies, or pasta. In the latter situation, Finn approaches the new substance with the same skepticism that a Republican approaches new taxes. In other words, it is a non-starter. But put the same kid in the vicinity of a giant mastiff and he will dive in head-first.
I guess we will have to continue to act as intermediaries, which isn’t so bad.
