Finn's Father

Trials and Tribulations

bryan--t — Mon, 20 Feb 2012 21:15:00 -0800

Today is the day. Earlier this morning Tina submitted an application to have Finn participate in Dr. Weeber’s Minocycline clinical trial at the University of South Florida. I don’t know that we will be selected, as I heard that hundreds have already applied for the 24 slots. But we are going to give it a go, and I certainly hope that this trial (or some future trial) is so successful that, as a result of it, one day Finn will be able to read this post, understand it, and explain to me why he thinks that I am completely full of crap.

(If that really happens, and a teenaged Finn reads this some day, then I have a few things to say. First, you really must clean your room. It’s a pig sty in there. That room is so gross that I think you are developing some previously unseen mold cultures in there; perhaps you plan to start your own clinical trial. And yes, if you clean your room, then you can borrow my car tonight. If I see a single scratch on it, though, there will be hell to pay. I don’t care if you are half a foot taller than me. As Bill Cosby said, “I brought you into this world; I can take you out.” Of course I realize that you have no idea who Bill Cosby is.)

Anyway, I am not crazy enough to really expect any of that, but it would be nice.

Also, I have to admit that putting Finn in this trial, or any other clinical trial, frightens me a bit. I have read about the potential side effects, and even though they are not that bad (although anything that dulls his world-beating smile would really suck), I still think that we don’t really know what drugs can do to kids. Hell, who would have thought that an antibiotic most commonly used for acne might be a treatment for AS? If this drug happens to ameliorate some symptoms of Angelman Syndrome, what else might it inadvertently do? And as I have mentioned before, some parts of Finn’s personality are tied to this disorder. How might he change if his disorder is minimized in some way? I don’t really know. Still, I remain excited about the trial, but even this excitement is tempered by some reservations.

Finn is a kid who seems really untroubled by such reservations, though. I was about to write that he is a fully-realized, unburdened id, but I don’t think that is true. He understands cause and effect, participates in bargaining, and will engage in requested behavior more because it is expected than because failure to do so will result in a punishment. So Finn is more evolved than I sometimes perceive. I guess I tend to observe him, rather than really interacting with him, while he is doing his own thing. Of course he looks like a bundle of unrestrained impulses in those moments, but that’s what free play really is. And even then, he isn’t destructive, or mean, or callous. He is just the sweetest little boy who is exploring his world in all the ways he can.

When I was in high school, I had an Andrew Wyeth print on my wall called “Christina’s World.” It depicted a disabled girl stuck in her front yard with her house and barn off in the distance, and she seemed to have no way to get back home. To this day I love that painting, and to this day I couldn’t really explain why. I am by no means a student of art; I don’t think that I knew the girl was disabled until college.

Now, I often feel guilty about that print; it seems that by putting it on my wall I somehow doomed my kid to a restricted life. I know that’s silly, and I know that the posters I put on my walls in high school could not impact my life so directly (otherwise I would be driving a Ferrari Testarossa while dealing with impossibilities of perspective and watching my hands regenerate themselves). Even though these things don’t directly impact me in such obvious ways, I still believe that the choices I made long ago continue to affect me, often in ways I don’t understand.

If we are lucky enough to be invited to join the Minocyclene trial, I really hope that we make the wisest choice there. Because the repercussions of that decision will affect us all, in ways both known and unknown, for years to come. I pray that our choice makes all of our lives better, especially Finn’s.

A Mind of His Own

bryan--t — Sun, 12 Feb 2012 21:21:24 -0800

I kind of love this picture. Partially because Finn looks like a biker ready to take off on the open highway. Partially because his crazy mop of hair looks even crazier in the breeze. But mostly because Finn is wearing a shirt that he picked out. He and his mom were out shopping, and Finn just had to have this shirt. He is expressing opinions about more than food and water-play, which I think is pretty damned cool.

Finn and I also went to a pet store today. I expected him to be fascinated by the dogs, or maybe the cats, or maybe even the guinea pigs. I was completely wrong. The animal that fascinated him the most, and that kept his attention the longest, was also the one I found most repulsive.

Yes, Finn was completely entranced by a snake.

So I guess I can add that to the list of things about which Finn and I disagree. In addition to snakes, that list includes:

- “Car Talk” on NPR (I find it amusing, while Finn considers it a great reason to whine incessantly);

- Post-war big band music (Finn always finds the big band station on my clock radio, and no matter how I might try to distract him he becomes instantly discontent once I turn it off. I can only stand so much Glenn Miller);

- The optimal driving conditions for Finn’s remote-controlled Mustang (I try to keep it on the carpet where it travels more slowly but is controllable, while Finn always drives it on the hardwood floors where it goes like lightning until it inevitably crashes into a wall or door); and

- The correct TV station (let’s be honest - for Finn, there is no correct TV station, because he is always dissatisfied with whatever is on, but he is even more dissatisfied when we turn the TV off).

Another interesting thing that Finn seems to have picked up recently is the ability to generalize things. More specifically, he is learning that different objects can be used for different purposes, which was not something that he previously demonstrated. For example, he has a small plastic container that we use to keep a number of buttons and other small toys. Earlier this week he was playing at the sink and suddenly he stopped, got down, went over to his toy box, pulled out the plastic container, emptied the buttons, and took it back to the sink to use as a water toy.

It may not seem like a big thing, but it’s a developmental step that I had not otherwise seen Finn master. And he has started doing similar things with other objects as well. His progress may be slower than most, but he is most definitely progressing.

As much as he is changing, some things remain relatively constant, such as his love for hide and seek. As soon as someone disappears and starts calling Finn’s name from afar, the kid looks under every bed, around every corner, and behind every couch until that person is found. His persistence cannot be denied.

Sick Again

bryan--t — Sun, 05 Feb 2012 21:03:11 -0800

Tina’s excited. And when Tina is excited, the whole house just feels warmer. She’s excited because she might have found a great school for Finn. It’s a charter school that’s not in our district, so I don’t know that we will be able to get him in there, but I know that we will try. And even if we don’t get in, it will be okay, because now we know that places like that exist, and now we have hope that we really might find just the right school for him.

Finn was pretty excited today as well. Not necessarily because of school, but instead because of the Superbowl party we attended. He didn’t give a crap about the game, but he sure loved the attention, the chatter, the cheering, and the fact that our friend’s huge television was on the whole time. He charmed fathers and daughters, decided that the ashtray on the balcony needed to be doused in water, remained forever skeptical of the blue cheese on the serving tray, and seemed to wonder why the cats were not as playful as the dogs he had encountered earlier in the day. He only tried to change the TV station off of the Superbowl once or twice, and he only tried to abscond with one or two iPhones. Basically, the kid was made for parties.

I wish I were as excited as my wife and kid, but I still am battling an illness. The worst part of it all was a 12-hour stretch starting late Friday night, during which I lost between 10 and 12 pounds as my stomach staged a revolt against the rest of my body. I still feel really exhausted, so yet again I am going to keep this entry short. Hopefully I will be up to speed by next Sunday. Till then, I hope everyone else avoids the sickness that I have.

Feeling (not so) Groovy

bryan--t — Sun, 29 Jan 2012 21:26:22 -0800

Like most of North America, I have been struck with a nasty cold this weekend. Basically, my head feels like a sopping-wet pillow, and my lungs just feel downright uncooperative. Finn and Tina both have the bug as well, so ours is a pathetic little household right now.

So rather than forcing something out, I think I will take the week off. Just because Finn still loves the car so much, here is another picture of the little guy grooving in my ridiculous convertible (sometimes he goes out to the garage to give the car a hug). Have a great week, and here’s hoping we all will be healthy and recharged by next Sunday.

Comprehension

bryan--t — Sun, 22 Jan 2012 21:26:47 -0800

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.

All-Around Silliness

bryan--t — Sun, 15 Jan 2012 21:41:09 -0800

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.

Discoveries

bryan--t — Sun, 08 Jan 2012 21:15:22 -0800

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.

Frohes neues Jahr

bryan--t — Mon, 02 Jan 2012 21:36:29 -0800

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.

Merry Christmas, Y'All

bryan--t — Sun, 25 Dec 2011 19:46:10 -0800

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.

Mayday! Mayday!

bryan--t — Sun, 18 Dec 2011 21:27:37 -0800

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.

Holiday Cheer

bryan--t — Sun, 11 Dec 2011 21:59:34 -0800

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.

Turkey Day

bryan--t — Sun, 27 Nov 2011 20:55:36 -0800

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.

Wouldn't Have It Any Other Way...

bryan--t — Sun, 20 Nov 2011 16:34:40 -0800

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.

Communication Breakdown...

bryan--t — Sun, 13 Nov 2011 21:07:25 -0800

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.

Would You Like Some Cheese With That?

bryan--t — Sun, 06 Nov 2011 20:55:51 -0800

I spent most of the week in Napa, California, so I didn’t really hang out with Finn all that much. I did notice something, though.

Napa sucks.

Don’t get me wrong. The area produces some of the best wine on earth, and many restaurants there are amazing (Redd, for instance, has earned a place on my list of favorite eating establishments). The scenery is great as well.

Despite all of those advantages, I don’t want to go back there anytime soon. The place is obscenely overpriced. Much of it is overcrowded, at least during harvest. Worst of all, though, is that Napa attracts the pretentious and the snobby in droves. Maybe we were staying at the wrong hotel or going to the wrong wineries, but it seemed that we were surrounded by people saying inane things about wine while showing off their $25,000 watches and lamenting the lack of decent tee times. I don’t know why it rubbed me the wrong way this time, but Napa certainly left me with a sour taste in my mouth.

What I do know is next time I will go to Paso Robles. Or Sonoma. Or Marlborough. But not Napa.

Now that I have offended half of northern California, I suppose I should move on to discussing my boy. It sure was great to see him when I got back in town this evening. He laughed hysterically at nearly everything I did, from cooking to cleaning to changing my shoes. We even managed to get him to bed before 8:00PM, which is a real accomplishment for us. (I have decided that the time change had absolutely nothing to do with our good fortune.)

It will be nice to spend more time with Finn this week. In some ways he just makes things so clear. Besides, I can just about guarantee that, no matter what other problems Finn may have, he will never, ever grow to be pretentious.

Little Devils

bryan--t — Sun, 30 Oct 2011 21:44:26 -0700

My boy was a bit of a stinker this week. In some ways, that is good news.

Specifically, I am convinced that Finn crosses his eyes to get a rise out of me, and not because of any underlying medical condition. Often, when he wants my attention he looks right at me, crosses his eyes, and waits for my reaction. I find it annoying, and it takes a hell of a lot of self control for me to ignore it, but ignoring it seems the best course of action. He is so perceptive, and so accustomed to nonverbal cues, though, that he must notice me wince ever so slightly whenever I see him cross his eyes. So I must work on my poker face a bit more in order to get this strategy to work.

I feel a bit lucky that Finn only crosses his eyes to get a rise out of me. Because he bites Tina to get her to react, which is much, much worse.

Tonight they engaged in a long, drawn-out battle of wills over this one, and I am not sure who won. It started right after the bath. Finn bit Tina, she got angry and left the room, then Finn began to cry and could only be consoled by Tina. Finally, she came back in the room, told Finn that she was sad and upset but that she still loved him, and as soon as he got within striking distance of Tina he tried to bite her again, which started the ball rolling all over again.

It is such a strange pattern to me. Finn really hates it when Tina is upset with him, and he must understand that his biting makes her mad, but it doesn’t stop him from doing it over and over again.

Tina and I got some ideas from other Angelman families for dealing with this, but I fear it may take some time to rid Finn of this particular habit.

In other news, we took Finn to a pumpkin patch today. Maybe I am just getting old, and maybe the town where I grew up is much different from greater Los Angeles, but I swear that there were no cheesy, make-shift pumpkin patches in northwest Louisiana when I was a kid. I really, really wonder who actually buys big, gross, and moldy old pumpkins for $45 a pop, but I suppose someone must do it, otherwise the vendors wouldn’t try to sell them at such an obnoxious price.

Even Finn was annoyed by the place. I am not quite sure why he was discontent there. Maybe he saw that Tina and I were disappointed. Maybe he just sensed the innate injustice of the place. All that I know is the the kid really is perceptive. Finn continues to show that one doesn’t have to talk to be bright.

On that note, Happy Halloween, everyone.

(And if you are wondering about the fuzzy picture, Finn managed to grab the lens just before I took the shot above. I still like it, though, even if it does look like there is a ghost between Finn and the camera.)

Fright Night

bryan--t — Sun, 23 Oct 2011 21:45:17 -0700

The little man has been scaring me lately, but I really hope that it is nothing more than my well-developed and innate sense of pessimism.

The scariest thing is that he has been crossing his eyes recently. Sometimes I think that he does it on purpose to get a reaction out of me. Sometimes I think it really only happens when he is tired. Sometimes I think that he has only recently realized how to control his eyes independently of one another, and now he is experimenting. Sometimes I fear that this is a big problem.

I hope this passes soon enough, but just to be safe I have asked Tina to take him to his ophthalmologist just to be sure. (As an aside, I really hate that Finn has a pediatrician, a geneticist, a pediatric neurologist, an ophthalmologist, an orthopedist, and probably some other doctors that I cannot currently recall. That’s a long list of physicians for a little kid.)

Another thing that scares me is that his balance has been a bit off lately. He has been falling more, as well as bumping into stationary objects and tripping over known hazards. Maybe he was just tired this weekend, but it sure makes me nervous. Whenever he gets anywhere near a potential hazard, I feel a jolt of nervous electricity radiate through my body. It almost feels like I am about to fall.

The final frightening issue is that Finn’s behavioral issues are not going away, at least not yet. Tina thinks that we need to give him new and better ways to express anger and frustration, and she is probably right. But sometimes he seems to bite me not because he is angry or frustrated or impatient, but simply because he finds it fun. It seems that the problem may be impulse control as well as a lack of ways to express his feelings. If anyone knows a good way to address this one, please let me know.

Despite the scary stuff, Finn was pretty fun to be around this weekend. We didn’t do anything that was particularly exciting, but Finn seemed happy as long as he had some attention, some stimulation, or some cheese (I think he had about a pound of the stuff today alone). We also learned that Finn adores rice crispy treats. Maybe we will make some for him for Halloween. They cannot be any worse for him than the rest of the stuff kids get on that day, and this way we can further delay introducing the little guy to candy.

It’s hard to miss things that you have never experienced.

Long Day

bryan--t — Sun, 16 Oct 2011 21:23:49 -0700

Somedays it feels like our lives fall into somewhat predictable routines. Yesterday was not one of those days.

For the first half of the day, Tina, Finn, his Omi, and I drove up to Griffith Park to attend a picnic with many other Angelman Syndrome parents. It was our third LA Angelman picnic, and we met a number of new families. In many ways, these events are so refreshing and, well, easy. It is easy when we don’t have to explain to anyone that Finn does not talk. It is easy when everyone around just understands why Finn might spend 20 minutes trying to get the broken water fountain to work. It is easy when you know that everyone around is keeping an eye on Finn to make sure he is safe (just as I was keeping an eye on all the other kids). It is easy when people just understand.

Finn’s behavior this week, however, has been anything but easy. The kid is just being aggressive right now. He grabs and scratches and bites, and he doesn’t seem to mind the negative reactions he gets (other than yelling, which he hates). Thursday was the worst day; by the evening, Tina looked as if she had run through a particularly thorny rose bush.

His aggressiveness waned a bit as the weekend came, but I don’t know what caused him to calm down, so I don’t know if any of our methods for dealing with him have helped. I hope so, because aggressive Finn is a pain in the ass to deal with, even as he remains pretty damned loveable.

The second part of Saturday was completely different, though, as Tina and I were lucky enough to get invited to a birthday celebration for President Clinton. There were actually three events - a pre party, then a concert at the Hollywood Bowl, then an after party in Beverly Hills (we didn’t quite make it to the after party, but that is a long, long story that my wife probably doesn’t want me to tell).

The concert was great, which isn’t surprising considering that it included Stevie Wonder, Usher, and U2. Even the speeches between the acts were good. Tina and I sang and danced. We ate and drank far too much. We flirted with each other and smiled and laughed.

This morning, though, as I thought about it all, I felt a bit sad and disillusioned. However you may feel about Bill Clinton’s politics, you have to admit that he has accomplished a hell of a lot and he has created a legacy. He is passionate about the things he does. He listens to his emotions, considers his feelings, and lets his instincts guide him. He is never afraid to be himself. He has made a difference in this world.

I cannot say any of those things about myself. And that needs to change.

So I have some work to do. I need to determine who I really am, and what kind of work might thrill me. I need to learn to be comfortable with myself. For example, right now I just cannot stand to be alone with my thoughts. I always, always, must have something to do or some sort of stimulus to distract me. I cannot even go to bed unless I am about to pass out, because I know if I am awake when my head hits the pillow that a flood of uncontrollable thoughts will leave me confused and disturbed and anxious. For the same reason, I have to jump out of bed as soon as I wake up in the morning - otherwise I am stuck with those thoughts.

I just feel disconnected from myself.

I guess, really, that I must become a better, more complete, and more honest person so I can be a better father to Finn. I cannot ever really come to know him if I don’t even know myself. And Finn deserves to be known, and understood, and cared for, and loved.

Everybody Jump

bryan--t — Sun, 09 Oct 2011 21:11:35 -0700

Over the last few days, Finn has been desperately trying to learn how to jump. He squats down and then stands straight up over and over again, but he just cannot seem to get any air under his feet. It’s pretty damned funny watching him try, especially since he is more amused than frustrated.

Still, I have not the foggiest clue how to teach someone to jump.

We have tried holding his hands and jumping with him. We have tried lifting him up as he transitions from squatting to standing. We have tried teaching by example. But it seems that jumping is one of those things that you have to figure out for yourself.

Finn’s Omi has also decided that it is time that Finn learned to ride a bike. I admit that this one scares me a bit. Not only does he have a disorder that severely impacts his balance, but he also has the misfortune of being the offspring of a man who has the balance and grace of a hippopotamus. But there is no reason to let my limitations get in Finn’s way, so I support this endeavor, even if I might close my eyes every now and then while she is working with him on his bike. Besides, he loves balancing himself on Tina’s massive exercise ball (which, honestly, has been around Finn his entire life; the thing was even in his delivery room), so I may be underestimating him anyway.

Finally, we continue to await news of the upcoming clinical trial, and I continue to hope that the drug involved could really impact Finn’s life. Even though Finn is deletion-positive, possibly the most severe form of AS, he continues to do so well and progress so far. His progress leads me to believe that he is actually a really, really bright boy who just happens to be saddled with a devastating disorder. And deep in the recesses of my mind I still wonder this bright kid might be like without his anchor. I know that I will probably never find out, but I still have hope.

Even if there never is a cure, though, Finn will be okay. I need to make sure that I will as well.

Last Week

bryan--t — Sun, 02 Oct 2011 20:10:53 -0700

Below is last week’s blog. I wrote it on Wednesday but didn’t get around to publishing it today. I was about to delete it, because it is a bit of a downer, but it is honest, so I decided to keep it. The good news is that I am in a much better mood now; spending time with Tina and Finn always helps. Also, I will publish something for this week in a day or two.

I am feeling somewhat pummeled and beaten down this week. Part of it is due to my recent work schedule; I basically worked non-stop from Sunday afternoon until now. It was basically a law firm schedule. That’s okay every now and then, but there is a reason I no longer work for a firm.

Part of the funk is from being disappointed by an outcome at work. For about 12 hours I thought that we would get to spend 6 months in London, but I just found out that someone else got the gig.

Part of the funk is from being sick (again). I swear that my immune system must be on vacation.

And part of it is probably just seasonal. The days are shorter, the traffic is worse, and that causes m mood to suffer.

Anyway, my mood is in sever need of an adjustment.

Finn hasn’t been in much of a funk, though. Instead, he keeps finding new, interesting ways to entertain himself. He recently figured out how to climb into his crib. Now, to be honest, there is nothing even remotely graceful about this. He pulls himself up, balances his stomach on the railing, and slowly but surely transfers his weight until he falls head-first onto the mattress. Like I said, it sure isn’t graceful, but it sure is funny. He loves it so much that as soon as we mention bedtime he races over to his room and bounds into the crib. And we all laugh every time.

Another new game involves him giving me the biggest smile he can muster while he waits for me to do the same and touch my forehead to his own. I don’t really know where this one came from, but he sure seems to love it. giving me the biggest smile he can muster.

Finn does get in bad moods sometimes, but there is usually an obvious reason like illness and with a little love, acknowledgement, and attention, he gets over it quickly. It’s just another lesson I need to learn from my son.