Well, it’s time for Crazy Opa Ebi Part II. This time, we put together a video about his contest, and in it he tells a little bit about his own personal journey with Angelman Syndrome and Finn. Please take a look, and please vote for Opa Ebi, aka Hardy.
One thing about the kid - he experiences joy in ways that I cannot fathom. Playing with a puppy, enjoying a game of hide and seek, or just getting his favorite girl scout cookie can make Finn downright joyful. It is pretty inspiring.
Frankly, he has seemed a lot happier recently. There are probably a number of reasons why. His expressive communication gets better by the day, and the more he feels heard and understood, the happier he seems. His cousin also came to visit for the last couple of weeks, and she might be the only thing he loves more than his Omi.
But the biggest reason he is happier is probably because we have changed some things about his schooling. During the fall semester, he had a teacher who viewed him as nothing more than a problem and an imposition. Not only did he feel the disdain, but other kids in the class felt it as well and probably reacted to Finn accordingly. That experience profoundly affected his mood, so I am glad that we have moved in a different direction.
I guess there is nothing all that surprising about the impact that teachers can have. When I was a kid, some teachers convinced me that I was worthless, while others gave me the capacity and the confidence to dream. I suppose things won’t be any different for Finn, except that Tina and I will need to be especially diligent about paying attention to how Finn reacts to his teachers and classes. We will need to be his barometer and his voice.
In any event, it is really nice to have happy, joyous Finn back in my life. Hopefully this good mood will stick around for quite a while.
I believe I had a chance to positively influence a child’s life today. I might have had a real impact. But I am afraid that I blew it, and that makes me sad.
It occurred while we were taking a walk along one of the hiking trails in Palos Verdes. About thirty minutes into the walk, we ran across two adults and a boy of twelve or thirteen. As soon as I saw the boy I noticed that he was a little different, but also a little familiar. When my mother-in-law asked his name, one of the adults responded for him. Then they noted that the boy was non-verbal. Then, out of nowhere the child smiled, walked up to me, and gave me the most earnest and sincere hug.
It was like one of Finn’s hugs. In fact, it was exactly like one of Finn’s hugs. And he hugged me again and again. He seemed to feel connected to me, and the feeling was mutual.
I asked about the child’s diagnosis, and was told that he is non-verbal autistic. I am not a doctor, and I am certainly not an expert on childhood disorders, but I was surprised that they thought him to be autistic. He was too outgoing, too friendly, too eager to connect, and too insistent about making eye contact. I could be crazy, but I think he had Angelman Syndrome.
Unfortunately, I didn’t really say anything to the adults. I don’t know why I was silent. Perhaps I thought it was not my place to offer advice. Perhaps I feared I would be ignored. Perhaps I just didn’t know how to introduce the topic. In any event, I didn’t speak up. And if that kid does have AS, I fear that I let him down. He clearly saw something in me, but I may not have offered what he needed in that moment.
I guess I often feel that way around Finn as well.
Speaking of Finn, he seems to be in a really good place right now. His communication skills are advancing every day. I find it fascinating that he often appears to be ignoring our conversations, but as soon as we say something that he finds interesting he immediately responds, either by using his PODD communication book to comment on what he just heard or simply taking cues from our conversation in connection with his behavior. In any event, he hears everything and understands it as well.
So we really need to be careful about what we say in his presence. We don’t have to worry about him repeating what we say, but our words impact him all the same.
I finally got Finn a car seat that fits in my convertible, so I drove him around the local peninsula a couple of weeks ago. He loved it, and it was pretty cool for me as well. It’s nice having him in the front seat with me - he feels more like a companion when he is at my side. He was generally well behaved in the front seat. He did try to throw my old Johnny Cash CDs out the window, but that may have more to do with his feeling about the music than his impulse control issues.
At least that is what I prefer to think.
I start a new job the day after tomorrow. There really was nothing wrong with my old job; the people were great, the pay was good, the work was interesting, and the hours were tolerable. But I could not get past the feeling that I wanted to try something bigger, so when something bigger was offered to me, I took it.
Since my old job was pretty good, the change has made me a bit nervous. I guess I don’t deal all that well with change, or with risk, so I am still wrapping my head around the decision.
During the middle the last few nights, I have awoken feeling some combination of anxiety and excitement. And when I cannot go to sleep I often sneak out of the bedroom, walk over to our TV room, and try to find something to settle my mind a bit.
It’s a habit that started when Finn was diagnosed.
And when Finn was diagnosed, I tended to watch the West Wing through the nights. At the time the show happened to play through the night on a cable station, it was interesting enough to take my mind off of Finn’s condition, but it was also somehow soothing enough to eventually let me fall back asleep.
Oddly, I discovered the West Wing on Netflix streaming the other day, and I have been watching it during the nights. So, yet again, that old television show is accompanying me through a bit of a life change. In a way, seeing the parallels has done wonders for me, because the challenge of a new job is nothing like the challenge of Angelman Syndrome. If I can handle AS, I can handle a new company.
Finn, on the other hand, continues to take most things in stride. He got a bunch of cool stuff for Christmas, but his favorite toy may be the puppet pictured above, which actually was not a Christmas present - it was something I picked up at work. Somehow the puppet has acquired the name “FredBob,” and he sounds a bit like the Taco Bell chihuahua. By the way, how is that for an ancient reference?
Finn feeds FredBob, takes him for piggy-back rides, likes to go careening through the house with FredBob in a toy shopping cart, and will sometimes even put FredBob to bed on a couch before going to bed himself. None of these may seem all that important, but I am excited whenever Finn engages in pretend-play.
Finn also had his first skiing lesson this past week. He wasn’t too sure about standing on the skis, but he loved the sit-ski. It’s a first step, and he managed to tolerate most of the rigamarole associated with skiing (all the gear, the cold weather, the ski lifts, etc.). So we are laying a foundation, and hopefully with time he will become a far better skier than me.
I think that’s it for me this week. I will try to be better about posting, especially once I settle into the new job. Writing this tonight has made me realize how much more I could say about the past month, so perhaps I should try to stick to a weekly schedule again.
In some ways it feels like months since I have been at home on a Sunday night. In other ways, it seems that time has been moving more quickly than ever. In any event, I am glad to be at home with a moment to myself on this misty Sunday evening.
The one thing that I am completely and totally not ready for is Christmas. I refuse to believe that the holiday is about a week away. Finn is doing all he can to defeat my willing disbelief, though. He likes to take evening walks through the neighborhood to see the various decorations. He seemed satisfied and relieved that Tina and I finally put up our own Christmas lights today. The only thing he likes more than our lit Christmas tree may be a fire in the fireplace.
I know it seems somewhat silly to light fires in Southern California, but it has been genuinely cold for the last few days, with temperatures struggling to break past sixty degrees…
In addition to decorations and trees, Christmas brings family and presents as well. I wish I could say that I am fully prepared for this holiday. I wish I could say that my Christmas shopping began earlier than this afternoon. I wish I knew what to get the various people on my list. I wish I were just a bit better prepared. But none of those things are true. Instead, I just feel scattered and anxious.
At least I can report that other things seem to be moving along well despite my current ineffectiveness. The FAST gala was a great success, despite the fact that its most famous invited guest could not attend. Every time I go to that event I am reminded of how many people have come into my life because of Angelman Syndrome. I learn so much from that group of people, and it is not just about AS.
I am constantly inspired by other parents and families who have not let AS define them or sidetrack any aspects of their lives. Despite the sleepless nights and the children without many words, this group of people remains hopeful and vigilant. The Gala reminds me that my family is not alone in this struggle, and that it is possible to draw strength from people who live thousands of miles away.
I also find the Gala interesting because it exposes me to people whose lives are, on the surface, so very different from my own. Were it not for Finn and his condition, I would probably keep myself surrounded by people who are very much like me. But the Gala and the AS community keep me in contact with people of different backgrounds, professions, religious beliefs, and political affiliations. I honestly wish that everyone had something like the AS community in their lives; the diversity that I encounter in this group of people makes it so much harder for me to demonize those who don’t believe what I believe or think the way I think.
Most of all, though, I like the FAST Gala because it is the only charity ball that I go to in any given year that is really about the affected community, rather than simply being an opportunity for donors to schmooze one another.
Finally, I have to mention that my happiness about the Christmas season was nearly smothered by the events in Connecticut last Friday. If I ever doubted that evil exists in the world, those doubts were recently eliminated. My thoughts and prayers continue to go out to all affected by the tragedy.
With that, though, I think it is time for me to go to bed. My weeks of craziness are not quite over yet, but things should calm down a bit by next Sunday.
Happy Holidays, everyone.
Finn’s Grandfather, Opa Ebi, is one of the kindest, friendliest, and most optimistic guys I know. He can find the good in every situation, he greets everyone with a smile, and he is never shy about opening his heart or his home to friends and family.
He is also a little crazy.
I honestly don’t think that there is an excursion on the planet that he won’t try. I have known him to spend weeks horseback riding across Mongolia. His last trip to Hawaii involved spending a week in a cliffside tent during a veritable typhoon. From skydiving to sailing on tall ships, and from backpacking through South America to bungee jumping in New Zealand, Opa Ebi loves nothing more than doing things that aren’t expected of people well into retirement.
Along those lines, he has decided that he really wants to go dogsledding through Scandinavia. And he has even found a way to do that for free, but he needs your vote.
So please give Finn’s Grandfather a vote when you get a moment. It is really easy, and winning sure would make Opa Ebi happy. Instructions are below.
How to vote:
1. Go here:
3. You will then be prompted to log in to the app by clicking on the blue ‘Go to App’ button.
4. It will then ask you for permission to post on your behalf. There is a blue ‘Allow’ button. I was able to click on ‘Skip’ instead.
5. You are then returned to the first page, but your vote has not been added yet. Check this by clicking on the white ‘vote’ button. Once it says ‘Thanks!’ in red writing, you have voted.
We met some friends at the Santa Monica Pier this weekend for a day of carnival rides. Finn pretty much loved all of them, but his favorite may have been the free-fall ride.
It was really, really great for him. He got so excited when the machine started to rise, and then he giggled uncontrollably once the contraption started to fall. Other than his complete despair once the ride ended, the experience seemed completely positive for him.
Unlike his father.
Every time that bucket fell, it felt like my testicles were trying their damnedest to make direct, physical contact with my tonsils. I would have been so very happy to get off of the machine after the first fall, but Finn was having none of that.
The things we do for our children.
If nothing else, we got some good photos out of this one.
Next time, though, I will take the pictures. Tina can be his free fall companion. At least for one of the trips.
(Then again, who am I kidding? Finn is completely worth a few seconds of testicular discomfort. I’d do it again in a heartbeat.)
Occasionally, I take things for granted. So, occasionally, I need to be forced out of my comfort zone so that I might remember to be thankful for the things I have.
Last night was one of those times when I was kicked far outside of my comfort zone. And it reminded me just how thankful I should be that Tina almost always is the one who tries to get Finn back to sleep when he wakes up at night. It’s a tough, tough job. And after doing it for just part of one night I am reminded of how strong my wife is, and how rarely I remember to tell her that.
It all started innocently enough. At around 2:00AM, Finn started whining a bit. The whining persisted, and eventually Tina began to stir in anticipation of going over to Finn’s room to persuade him to sleep a few more hours.
Since the previous night had been difficult for Tina, and since it was a weekend and I didn’t need to go to work in the morning, I volunteered to go over instead.
"Do you want to go?" she asked.
"I don’t necessarily want to go, but I will,” I responded.
"Okay," she said as she turned over, closed her eyes, and acted as if she were asleep before I could change my mind.
I put on a sweatshirt, grabbed a glass of water for Finn, and walked to the other side of the house.
As soon as I walked in, Finn stood up and asked to be held. Together, we lay down on the extra bed in his room and he quickly stopped whining. The he cuddled next to me, put his head on my shoulder, his hand on my chest, and almost instantly fell asleep.
"This is great!" I thought. "The kid is happy, and there is something so wonderful about having him sleep on me like this. I feel a little like a king."
Then, a few minutes later I thought, “I need to pee. This is officially getting old.”
That was when I made my first mistake. I picked him up and put him back in his bed far too quickly. He began to protest, but I thought that he would surely go back to sleep soon; he seemed so tired. I shut the tent over his bed, closed the door, and sprinted to the bathroom.
Then Finn got angry.
He was no longer interested in sleeping at all. He was just mad to be alone. He began to howl in protest.
That was when I made my second mistake.
Rather than immediately going back in, I decided to give him some time to calm down on his own. So I sat on the floor in the living room and, realizing that I might have some time to kill, I began checking facebook.
I learned many things over the next 15 minutes. I learned that LSU lost to Alabama. I learned that the two Angelman Syndrome charities were at each other’s throats again. I learned that I don’t want to hear about anyone’s political opinions through facebook updates.
And I learned that Finn was getting more and more angry.
So I finally put the phone down and went back in his room.
As soon as I got Finn out of his bed his anger dissipated. But he was so awake that you might have thought that he had just finished a Red Bull. The kid tried to run around the house. When I told him that he could not leave his room, then he became especially good at turning every available piece of clothing or bedding into the world’s greatest toy. He laughed. He giggled. He squirmed away whenever I tried to lay down with him.
This went on for seemingly an hour. And it just didn’t get better.
Just when I felt like curling up in the fetal position and crying, my savior arrived.
Tina came in and said, “Hey, what’s going on in here?”
"He just won’t go to sleep!" I whimpered. She offered to take over, and before she finished the sentence I sprinted back to our bedroom, pulled the blanket over my head, and prayed for sleep.
I don’t really know when she came back in or how long it took her to get him to sleep. I just know that I felt so helpless in his room last night, and then so relieved as she walked in the door.
The next day, I was tired and grumpy. And it had only been one night. Tina does this all the time. I don’t know how she makes it through the day.
Tina, my love, I am so thankful for you. You do such a great job of taking care of Finn and me. If I ever take you for granted again, just put me on night duty for a couple of days. That will get me to toe the line once again.
Photo 1: In which Tina proves without doubt or consternation that Finn has way more hair than his father. To be honest, though, had I cropped this picture differently it would probably look like Finn was doing the hustle.
Photo 2: In which Finn’s father proves that he was not paying even a little bit of attention to the camera.
Photo 3: In which Finn and father finally smile in unison, but no one will notice dad because all eyes are on Finn (as they should be).
In case you were wondering, Finn’s favorite thing this week is playing on the shoulders of his father and grandfather. Another one of his favorite things right now is riding in his stroller. I almost get the sense that the little guy realizes that he will soon be too big for these things, so he is making the most of his opportunities now.
Carpe Diem is not just a dead-language-motto for him. Robin WIlliams would be proud.
A few days ago, I found myself having a conversation with an old friend about my childhood. It started as a conversation about Finn, but somehow it turned into being about me (which is usually one of my least favorite topics).
During the course of the conversation my friend mentioned that I always seem to be pretty hard on myself, and asked me why. More specifically, she asked me what about myself I found so scary or disturbing.
I tried to duck the question, but eventually I gave in. I admitted fearing that I am at, heart, a lazy, unproductive, and pretty worthless dude (don’t worry, I am getting somewhere with this).
She pressed further and asked why I feared that. I really didn’t want to tell her the answer, but finally I admitted the truth. I fear those things because that is who I was as a teenager.
But then my friend reminded me of something else about my teenaged years. I was really, really depressed. And depression kills motivation. Which can lead to depressed people seeming — and feeling — lazy, unproductive, and generally worthless.
As hokey as it might sound, that realization made me feel unburdened in a way that I cannot remember experiencing. Maybe, just maybe, those characteristics are not innate in me. Maybe, just maybe, they were a symptom of a time, place, and circumstance that I long ago escaped. Maybe, just maybe, I can leave those fears in the past.
This little realization has left me feeling the kind of optimism that I have only rarely before experienced. I felt this way the first time that someone I truly cared about told me she loved me. I felt this way when Tina first kissed me 14 years ago. I felt this way when my cheek stopped spasming long enough for me to say “I do” at our wedding. And I felt this way when the doctor told us that we had given birth to a healthy little boy.
But as great as those occasions were, this one feels more sustainable. Because this one is about no one but me, and it depends on no one but me. It’s truly internal. It’s as if I found out that what I fear most in life is simply a mirage.
I am not trying to sell this as some Oprah moment, and I certainly realize that this whole post may be of interest to exactly one person in the world, but that’s okay. And even though this post isn’t directly about Finn, in many ways he is at the center of this. Because I really think that the best gift I can give him is having a father who is capable, loving, present, and optimistic. For once, I actually feel like that guy.
It’s a great feeling. In fact, my smile might be as big as Finn’s right now.