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.
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.
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.
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.
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.
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.
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.
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.
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.
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.