Finn's Father: Archive

A Small Victory

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...

May 28th

Many Happy Returns

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...

May 21st

Guest Post from Finn's Mom

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...

Apr 30th

On The Mend

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....

Apr 16th

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CTRL-ALT-DEL

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...

Apr 9th

Lottery Misfortune

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...

Apr 2nd

Rainy Days and Mondays...

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...

Mar 26th

Counting Gifts

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...

Mar 19th

Feeling Crazed

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...

Mar 9th

Of Mice and Finn

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...

Feb 27th

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Trials and Tribulations

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,...

Feb 21st

A Mind of His Own

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...

Feb 13th

Sick Again

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...

Feb 6th

Feeling (not so) Groovy

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...

Jan 30th

Comprehension

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...

Jan 23rd

All-Around Silliness

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...

Jan 16th

Discoveries

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...

Jan 9th

Frohes neues Jahr

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...

Jan 3rd

Merry Christmas, Y'All

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.

Dec 26th

Mayday! Mayday!

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. ...

Dec 19th

Holiday Cheer

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. ...

Dec 12th

Turkey Day

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...

Nov 28th

Wouldn't Have It Any Other Way...

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...

Nov 21st

Communication Breakdown...

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...

Nov 14th

Would You Like Some Cheese With That?

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...

Nov 7th

Little Devils

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,...

Oct 31st

Fright Night

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...

Oct 24th

Long Day

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....

Oct 17th

Everybody Jump

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...

Oct 10th

Last Week

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...

Oct 3rd

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Big Love

Finn is starting to outgrow some of the things that we have come to rely on. For instance, he really doesn’t fit in the high chair that we use, and his feet touch the ground while he is being pushed around in his stroller. The days of sleeping in his crib are quickly ending, and even his car seat may soon be too small. The boy is growing up, and we need to grow with him. Finn is also...

Sep 19th

The More Things Change

A friend from Germany is in town this weekend. Even though she doesn’t drink, it was a great excuse for the rest of us to drink lots of wine, beer, and whiskey. That’s a long way of saying that I am three sheets to the wind, so this post will be shorter than most. What I just learned a few moments ago is that our friend, Steffi, is not only a wonderful person, but she also is the...

Sep 12th

Returning Home

This ended up being one of those weeks during which Finn and I didn’t spend all that much time together. Jet lag took a toll on both of us, Finn’s preschool started up, and towards the end of the week Finn got sick. So until Saturday, my time with the little man was a bit limited. Despite that, we spent a lot of energy this week worrying about the sorts of things that probably...

Sep 5th

Planes, Trains, and Automobiles

After spending time on three planes, two boats, trains, busses, a horse carriage, several cars, scores of moving walkways, and a trusty, never-say-die stroller, Finn’s 2011 Tour of Germany is at an end, and it was in all measures a success. I am so exhausted that I can barely string together coherent sentences, so rather than going for some sort of coherent narrative, I will just string...

Aug 29th

Sprechen Sie Deutsch?

I have spent the last few days with Tina’s extended family. That means lots of food, lots of beer, lots of laughter, and lots of German. My German isn’t good, but I understand it much better than I speak it. Accordingly, when I am around this group I can understand what is being said, but only if it is relatively simple and spoken slowly. It also helps if the person is speaking to...

Aug 15th

(Ain't) Misbehavin'

I love my kid. In fact, I adore him. But Holy Crap was he a pain in the ass today. He complained about his breakfast and had a meltdown when we refused to stop the earth’s rotation in order to get him some cheese. Based on his cries and his demeanor, you might have thought that he was at Guantanamo. After breakfast, he was only temporarily satisfied as long as the television was on,...

Aug 8th

Maybe This Time I Won't Accidentally Delete This

Tina and I spent most of the week at the Angelman Syndrome Foundation Conference in Salt Lake City. This was my second conference, and I thought that I knew how I would react and what I would feel. Unlike last time, I would not feel conflicted or overwhelmed or just plain emotional. Unlike last time, I would only be optimistic and unreservedly positive. Unlike last time, I would be in...

Aug 1st

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The Longest Week

I don’t feel particularly well today, and spending the last hour setting up Finn’s new iPad hasn’t helped matters. So I think I will just post a few photos today and shoot for an update later this week. Luckily, Finn is his ever-cheery self, despite a few falls and tumbles over the last few days. He is becoming even more demanding at meal time, though, and I need to find a...

Jul 25th

Celebration

This was the scene earlier today at our house as we celebrated Finn’s 4th birthday. Someone asked me if Finn really understood that the party was for him. I don’t really know the answer to that, but I am not sure that it matters for Finn. He loves people. He loves attention. He loves celebrations. He loves easy access to bread and cheese. He loves singing. And he loves the...

Jul 18th

Hope (Solo) and Resiliency

I have a thing for sports. Football, basketball, hockey, soccer, and tennis are all great, and I am even fascinated by some sports that I don’t really understand, like rugby or cricket. Basically, as long as the sport isn’t baseball, I could probably watch it with a beer in hand and be entertained. Even though I generally love sports, and have watched many, many games, I was...

Jul 11th

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Water Fascination

Finn is definitely a summer kid, because summer means heat, and heat means water play. Now that the weather is warmer, Finn gets to run around in his swimsuit getting as wet as humanly possible, and he could not be happier about it. All is okay with the world when he is frolicking in a pool, helping us garden by watering the plants, or simply playing with water guns and spray bottles. I know...

Jul 4th

Voices

Earlier this week I read an article that purported to explain the different stages of the relationship that sons have with their fathers. The first stage was worship; the next was rebellion; the third was acceptance; and the final stage was friendship. The author’s idea was that each of the first three stages lasts about 10 to 15 years, and the final stage lasts for whatever remaining...

Jun 27th

Finn's Father's Day

When I was a kid, Father’s Day always seemed to be a bogus holiday. For as long as I can remember, Mother’s Day was where the real action was, and Father’s Day seemed like an accommodation, or maybe just an apology. Maybe that said more about my parents than about society in general, but Father’s Day was always something that I remembered on Saturday afternoon, and then...

Jun 20th

Friends old and new

Last Saturday, the last of my core Louisiana friends got married, and he chose to do it in Austin, where many of us went to college. The weekend was, in many ways, like hundreds we had while in school. We surveyed bars and restaurants until the early hours of the morning. We played basketball in 105 degree heat. We bickered about personality traits that were set in stone 20 years ago. We...

Jun 13th

Needing a Lift

I don’t usually feel that Tina and I are a stereotypical American couple, but at this moment I am at my Mac working on my blog while Tina is shopping for shoes on her computer. The kid just went to bed for the night, and I am considering what I might watch on television this evening. So we definitely have our moments. To be honest, I could use a bit of mindless American Gothic, because...

May 30th

The Wide World Of Finn

This has been one of those weeks in which seven days felt like a year. For example: My family was in town at the beginning of the week for my uncle’s 75th birthday. I didn’t enjoy my uncle’s party as much as I would have liked because, as I found out later, I was suffering from strep throat. Later in the week, I was kind enough to share my illness with my wife, who quickly...

May 23rd

Watch

Here is Finn’s Video!

May 17th

Family Values

My Uncle Jimmy, who lives outside of Palm Springs, turned 75 this weekend. To celebrate his birthday, much of my family flew in to southern California for a surprise party. We decided against taking Finn to the desert for the affair. I thought he would hate the long drive and I feared that the party would have been frustrating for him and for us. Specifically, I thought there would be too...

May 16th

Mother's Day

Here’s a cheer for Finn’s mother. Happy Mother’s Day! Without you, Finn and I would be lost. Speaking of Finn’s mom, here is a link to the fundraising page she created (with just a little help from me) for the Angelman Syndrome Foundation Walkathon. Please check out the page and the video as well. In other news, I spent the last 48 hours in Vegas, and I can barely...

May 9th

Sheepless Nights

I just found out that US Special Forces apparently killed Osama Bin Laden. And with that, my roller-coaster week is just about complete. The worst part of the week arose because of a routine physical. During my meeting with my doctor, I mentioned that I tend to suffer from night sweats. I also mentioned that I have recurring digestive problems. After many, many rounds of questions, she...

May 2nd