Finn's Father

A Small Victory

bryan---t — Mon, 28 May 2012 12:47:20 -0700

I suspect that there is nothing like having a child to make one appreciate small victories. I also suspect that having a special needs kid makes those small victories all the more, well, special.

This afternoon at the beach I encountered two small victories.

First, in over two hours at the beach I never had to admonish Finn about putting sand in his mouth. This may not sound all that impressive, but it really meant something to me. I have spent many, many afternoons over the past three years trying to convince the little guy that Southern California sand is neither tasty nor nutritious, but he always had to learn this lesson on his own. Repeatedly. Today, however, he never really tested this theory, and was much happier pouring the sand down the back of my shirt than into his own mouth.

Second, Finn actually respected my wish that he not go into the water. It might sound pretty heartless to take a 4-year old to the beach but prohibit him from going in the ocean, but it is actually really considerate once you realize just how cold the water is here. It’s really freaking frigid. So cold that the surfers, who were all wearing full wetsuits, were shivering as they came out of the ocean (even though the air temperature was probably in the mid seventies). So frigid that sea gulls sometimes emerge from the Pacific with ice cycles clinging to their claws. Accordingly, making Finn avoid the water was a matter of compassion, not cruelty.

Amazingly, despite every urge in his little body, he respected my requests. To be honest, it was not particularly easy for him. He tried to use guile and subtlety to trick me, like slowly sliding towards the water (rather than walking), or walking in elaborate patterns that only meanderingly approached the ocean, but whenever I told him to stop he ceased his little games and found something else to do. I was really amazed, even though this is, admittedly, somewhat minor.

Finn spent the rest of the time at the beach trying to introduce himself to everyone in our general vicinity. Even though I know I have a terribly cute, and terribly social, child, those interactions always scare me. I hate explaining that Finn isn’t always like other children, so I end up intercepting him before I have to make that admission.

It probably makes me seem like an anti-social person, or just a bad dad, but I don’t know how to stop doing it. I don’t know how to let him interact with whomever he chooses and just deal with any explanations that need to be made. I guess I am a bit of a coward.

But I don’t see Finn stopping his methods, so I will need to grow a spine and follow him along for the ride. It’s just another lesson that Finn is determined to teach me.

(On a side note, special thanks to John for re-establishing my access to the blog. For some reason I could not get into the blog yesterday and it seemed to be tied to an email issue. Oddly, the word “bryancantrememberhisemail” is now plastered across the top of my screen. Must be a coincidence…)

Many Happy Returns

bryan--t — Sun, 20 May 2012 21:06:26 -0700

I recently encountered two signs that I have been away from this blog for too long.

1. The website no longer shows up as one of the most visited sites on my computer.

2. People on facebook started calling me a slacker.

So, I guess it is time to get back at it.

It’s funny that I took the time off because I was feeling depleted and stressed, but in retrospect I wonder if failing to write this blog added to my stress. One problem I have is that I have almost no capacity for introspection or self reflection - I get nervous whenever I think of myself. But the blog makes me fight through that. In order to write this I must take determine what I am thinking about and how I am feeling. Even though the experience makes me uncomfortable, and even though the process feels unnatural to me, in the end it settles me a bit.

Because right now, for the first time in weeks, I feel that I can breathe.

I cannot really say why I feel so stressed, but at least I can admit it and, in many ways, really thinking about Finn and all that is going on in his world gives me a sense of scale and proportion. Because, let’s face it, he is more important than the other crap in my life.

But that’s enough about that.

I wonder how Finn experiences stress. I used to believe that he didn’t feel stressed. He most certainly expressed plenty of negative emotions, from anger to frustration to fear. Stress, however, is harder for me to see in him. Just the other day, though, Tina mentioned that he doesn’t like one of the preschools he attends and he resists going there. That must be stressful.

The dislike of this particular school is also a bit odd given how social he is, and it makes me wonder what he experiences there. Luckily, the school year is almost over and things will soon change one way or another, so this particular issue will hopefully resolve itself. Regardless, though, I don’t want Finn to dislike school. I felt that way until my senior year of high school, and it left me pretty miserable.

Finn was definitely not miserable yesterday as we attended our fourth ASF walkathon. He had a great time with virtually everyone there and even managed to commandeer some gardening equipment (see above).

He was also pretty assuredly not miserable today as he attended a baseball game between two local youth teams. The coach gave Finn some pointers on hitting softballs and the team even gave Finn a jersey (but he does need to grow into it a bit).

Finally, Finn was definitely not miserable when a peacock (or, more likely, a peahen) invaded our back yard. Those things really do look like dinosaurs when you get close to them.

I guess that is all for this week, with one exception. John, the dude who encouraged me to write this blog, just became a father himself as his wife gave birth to a beautiful baby girl. Congrats John!

It’s about to get real.

Guest Post from Finn's Mom

bryan--t — Sun, 29 Apr 2012 21:28:05 -0700

I decided to take a week or two and recharge my batteries, so in the interim Tina has graciously submitted a guest post about Finn’s recent communication advances. The stories are below.

First, a few stores about his PODD book.

(1) A few days ago Finn spent the afternoon at my mom’s house. A friend (Johanna) who is represented in his PODD book came over to play. Normally, at the end of the day I would usually use the PODD book to “tell” Finn what happened that day. As I navigated to the people page to tell Finn that Johanna was at Omi’s house today, I paused, then instead of telling him that, I decided to ask him “Who was at Omi’s house today?” He immediately pointed at the image for Johanna! I can’t believe I have never thought to do this before!

(2) The other day as we were using the PODD book to talk, Finn pointed at “camping”. He has been doing this a lot ever since his cousins were here a few weeks ago and spent some time camping. Usually when he points to camping I talk about how his cousins went camping when they were here. This time, instead I said “oh camping! Do you want to sleep outside?” As soon as I said that, he immediately pointed to “sleepover” which is on the same page of the PODD book (special events). He definitely associated my saying “sleep outside” with sleeping somewhere special or different and pointed in context to “sleepover”! Again, it was very exciting.

(3) On Monday, during Finn’s speech session Finn asked for food. His therapist had veggie chips so she used the “potato chips” icon to describe the chips. Ever since that session, he has been pointing at “potato chips” in his PODD book. I find this interesting because he never really pointed at that before, so he was definitely repeating something that he had learned on Monday. Unfortunately, we don’t have any potato chips in the house, so I keep having to tell him we don’t have any, and we don’t have any veggie chips either. Now, however, he has begun asking for other types of food. Often he wants crackers but this morning, for instance, he asked for a second banana after already finishing one for breakfast. I gave him a second one and he was so happy. Clearly that was what he had wanted.

(4) Finn has a map of the world in his room. A few weeks ago when we were sitting in his room he pointed at the map. So I started telling him about the map and showed him things that were meaningful to him. Specifically, I showed him Germany (where his cousins had just visited from and where we have also flown), Louisiana (where we have visited his grandparents), Los Angeles, and all the different Oceans (telling him about the Pacific Ocean when we go to the beach, etc). He was really intrigued and was constantly “asking” me to show him things on the map. A few days later we were using his PODD book and he pointed at “Germany.” So, like I always do when he points at something, I verbalized “Germany” and then he immediately went over to the map and pointed at the map! Now every morning he insists that we look at the map and he won’t let me go until I have shown him all the different places! He seems to take after his father in his interest of maps!

And a few other communication stories:

(1) Finn is becoming very intentional in indicating when he needs to use the restroom. For a while, I have called it “subtle” signs, as I am able to decipher when he needs to go by knowing that (a) it is approximately time, and (b) he is making a specific face, doing a little one legged dance, getting suddenly still or quiet. Now for a while, he has combined that with very subtly pointing at his bottom or hips. Well this morning, I was cleaning up a mess at the breakfast table and he had gone to play in another area of the house, suddenly he came running up to me, stopped next to me, loudly exclaimed “uhhh!” and forcibly touched his bottom with a flat hand. It could not have been more obvious what he was trying to say! I immediately took him to the restroom and he used the room for its intended purpose.

(2) Finally, just a fun story. Last week we had a playdate at a friend’s house and they had a green parrot as a pet. Finn was interested in the parrot (although he was more interested in their dog), but the cool thing is that when we got home he started constantly removing a little green parrot magnet that we have on our refrigerator and walking around with it. We have a whole bunch of magnets on the refrigerator and he has never really played with them or shown much interest, but he has been searching out that parrot almost daily now. Definitely associating it with the parrot at his friend’s house.

Just wanted to share!

On The Mend

bryan--t — Sun, 15 Apr 2012 21:30:21 -0700

Thanks to everyone for the well-wishes last week. Luckily, Finn is just about back to normal. His appetite is bigger than ever (tonight he ate enough pasta for two adults, along with seven cheese sticks and even some roasted potatoes), but his energy level still isn’t quite right.

But he is headed in the right direction.

With that being said, this photo makes me think of an old movie. Any ideas?

I haven’t even seen this particular movie, so I may be comparing Finn to a crazy person, but I found the resemblance impossible to ignore.

CTRL-ALT-DEL

bryan--t — Sun, 08 Apr 2012 20:34:54 -0700

Finn got really, really sick on Friday night, and he still isn’t really over it. So sick that he vomited all night Friday and through much of the day on Saturday. So sick that he actually took a couple of naps on Saturday afternoon. So sick that he really hasn’t eaten much of anything in 48 hours.

So sick that he started having drop seizures yesterday.

It seems that the seizures have passed (knock on wood), and Finn even had half a stick of cheese for dinner. He played with his cousins for a few hours today and seemed steady on his feet. So he is getting better. But whenever I see his body and mind fail him like that, I get scared.

This weekend has really wiped me out, so I am going to call it an early night. Here’s hoping that the upcoming week is a bit brighter.

Lottery Misfortune

bryan--t — Sun, 01 Apr 2012 21:52:00 -0700

Despite our best efforts, and despite spending $13 between us, neither Tina nor I happened to win the $640,000,000 lottery jackpot on Friday. We may not have gained any fortune, but we did gain a bit of insight about ourselves and our priorities. In discussing how we were going to spend the jackpot, we decided to spend the money as follows:

- Multi-million dollar donations to the leading Angelman Syndrome charities (FAST and the ASF);

- A generous donation to Finn’s current private preschool (Finn actually asks to go to that school, which is something that I never, ever did as a child);

- Creating a generously-funded special needs trust for Finn;

- Hiring in-home help for Finn (this one was really as much for my wife as for my son; sometimes Tina gets so tired that she cannot see straight);

- Buying a nice house on the water in Manhattan Beach (this is when we started to get a bit selfish);

- Buying a little convertible (oh wait, I already did that); and

- Getting a subscription to HBO (I am really interested in Game of Thrones, but I am too cheap to pay for premium cable channels).

So we started off with high ideals, but quickly reverted to more mundane goals. At least we started with our hearts in the right place.

There was nothing mundane about the week with Finn. Unfortunately, his biting persists, but I think we may have seen a breakthrough tonight at dinner.

We tried something that, in retrospect, should have been obvious. When Finn bit Tina’s hand at dinner, she told him that he could not have any more cheese. Suffice it to say that this immediately got Finn’s attention. The kid begged and pleaded. He finished his dinner in record time without any prompting (usually we give him cheese if he has a few bites of his actual dinner). He did everything but sing for us once he realized that his mother was serious about withholding cheese.

But we didn’t give in, and he seemed to realize the cause and the effect. Since he rarely bites Tina at the table, this particular strategy may not prove to be universally effective, but I am glad to see something get through to him.

Other highlights of my week with Finn include:

- His new favorite song is “Silly Love Songs” by Paul McCartney. He smiles and looks up whenever the song comes on the radio. I think it has as much to do with the slightly corny, slightly industrial beginning to the song as anything else, but Finn definitely likes it.

- He can play golf like a pro (or, at least, he can hit the crap out of a toy golf ball using a toy golf club);

- He has no tolerance at all for LA traffic. He clearly learned that from his father; and

- While he is excited to have his cousins from Germany in town, he seemed most pleased to see his Aunt Julie. Once Finn decides that he likes you, you have a friend for life.

That’s it for now. Like my wife, I am currently so tired that I cannot see straight. I fear that the upcoming week may be especially difficult, so I might as well get some sleep now. I may need it.

Rainy Days and Mondays...

bryan--t — Sun, 25 Mar 2012 21:45:02 -0700

A couple of forces combined today to make this day an especially difficult one. First, the rain came and refused to leave until late in the day. Second, Finn and his mother decided to enter into a day-long test of wills. Unfortunately, that contest had no winner.

If you are wondering why rain is such a big deal, it’s because we are wimps who live in always-sunny Southern California and I, at least, have no idea how to keep Finn entertained if we are stuck indoors. Country music television worked for a little while, as did old episodes of Thomas the Tank Engine. After about an hour of television, though, the kid was really done with passive entertainment. Then his mother joined us, and Finn found a new game to play. I don’t know exactly what he would call the game, but it sure seemed that it was entitled, “Let’s Bite Mommy and See What Kind of Crazy Stuff She Might Do!”

Accordingly, he spent much of the day trying to bite Tina. While he has had spells of biting in the past, this was different. In the past, he tried to bite us (mostly Tina) as a way of expressing displeasure or saying “no”. Today, he was biting to get a rise out of Tina. And it worked. Boy did it work. She first responded by telling him no, but it escalated from there to giving him time-outs by dragging him to our guest bedroom, trying to ignore him, pushing him away, handing him off to me, and finally getting so irritated that she yelled at the kid and walled herself off in our office.

On a normal day, I probably would have taken Finn for a walk or to a park, just to get him out of his mother’s hair. And I should have done something more. But as the whole vibe in our house grew more toxic, I became less and less effective at dealing with Finn. It just felt like the day was born under an evil sign.

To be fair, though, some parts of the day were not so bad. Finn was pretty cute as he walked around outside and played in the rain puddles; I think he looks especially fetching in bright colors. Also, for the first time in recent memory, we got through our entire dinner without Finn asking for even a single slice of cheese. On this day, at least, my Swedish meatballs were good enough to make him forget about coagulated milk products.

The biting, however, needs to stop. Part of me thinks that it might get better if Tina didn’t really react to it, but it is very, very difficult to remain stoic when a 4-year-old is trying to bite you. She cannot easily ignore him when he starts biting, because they are often alone in the house and he needs fairly constant supervision. I don’t know what we should try next, but I am open to suggestions. The status quo just isn’t working.

Counting Gifts

bryan--t — Sun, 18 Mar 2012 21:59:48 -0700

I learned something about Finn a few days ago that really surprised me. Finn is learning how to count.

I don’t know why that surprises me. I should have learned by now that Finn’s capabilities far exceed his limitations. But it does surprise me, and that says as much about me as it says about Finn.

I guess that I find it hard to gauge Finn’s progress because he doesn’t speak. In a way, I suspect that I judge people based on what they say and how they say it. Sine Finn’s skills in this area are pretty limited, I don’t always appreciate how much he is progressing, nor do I appreciate that he has to be so much more creative in how he communicates with us. The kid cannot simply tell us, for instance, that he wants to take his scooter to the park. But he can go to the garage, grab the scooter, and try to put it in the trunk of the car.

If you are wondering about the counting, well, it all comes back to cheese. Basically, if given the choice he would seemingly eat cheese, and only cheese, for every meal. Since Tina and I are pretty sure that he should have the occasional fruit, grain, or vegetable, we often bargain with him at the dinner table. We tell him, for instance, that we will give him another cheese stick if he eats a specified number of bites of his other food.

When we started this tactic we counted aloud as he ate his pasta, cereal, fruit, or bagel. But now, even when we don’t count aloud once he has finished the allotted number of bites he makes it readily apparent that he expects the next stick of cheese. We vary the numbers, just to keep him on his toes, but he isn’t easily fooled. Because, let’s face it, this is important stuff for the little guy.

He will not be denied.

While Finn is learning to count, I am learning to enjoy relaxing with my family. Sometimes, the best times with Tina and Finn are the times when we don’t really have much to do. For instance, we spent Saturday morning kicking around in bed (in Finn’s case, literally kicking around), reading books about alligators and ducks, listening to the rain and wind assault our windows, and leisurely thinking about what to do with the day. It was pretty cool, and pretty different for me. Before Finn, I could never have spent that much time in bed without either being asleep or sick. Maybe he just might yet teach me how to be comfortable in my own skin.

It’s yet another gift he has for me.

Feeling Crazed

bryan--t — Fri, 09 Mar 2012 07:11:05 -0800

I have had a crazed couple of weeks, and it really isn’t going to slow down this weekend. After that things should get back to normal, and I will resume my usual schedule.

Until then, though, here is a great picture of the little guy after he managed to climb into a sink. His water fascination really shows no signs of abating.

My Finn fascination also shows no signs of abating. That kid has tackled my heart.

Of Mice and Finn

bryan--t — Sun, 26 Feb 2012 21:40:28 -0800

We learned something new about Finn this week. Apparently, he has the ability to catch mice with his bare hands. He was at a farm with his grandparents and they came across a cat playing with a mouse. Somehow, Finn managed to catch the mouse by his tail and proudly presented his find to his Opa and Omi. The mouse was having none of it, however, and quickly bit Finn on the finger.

The bad news, of course, is that Finn got bit.

The good news is that he now has a more healthy skepticism of animals in general.

The next day, he came across a dog. The owner of the dog was somewhat reticent, so Finn was warned to stay away because the dog might bite him. As soon as he heard the word “bite” he froze. All in all, this is actually great, because a small and insignificant mouse bite is probably the most painless way for Finn to learn that animals are not always predictable.

I am still impressed, though, that Finn was able to catch that mouse by its tail. That is something I would admittedly never try, but even if I tried it my chances at success would be virtually nil.

While Finn was pretending to be the host of his own wild animal show, Tina and I were in the bay area. She attended a conference about communication for non-verbal kids, while I cursed and ranted while dealing with crazy work issues in our hotel room.

Fortunately, when we were together we managed to find a little fun. We saw Bill Maher perform in San Jose (you can see the entire show here, at least for the next few weeks). We caught up with some old friends. We had a wonderful dinner in San Francisco (the Salt House, for those of you who might be wondering, where the scallops are really amazing). We walked the Golden Gate bridge. And then we hightailed it back to the San Jose airport in order to fly back to Finn. San Francisco is cool, but not nearly as cool as my boy.

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.