Most of the week I pretended that I wasn’t sick; there was simply too much to do at work to risk having an illness. Once Saturday morning rolled around and I was honest with myself, though, things changed rapidly. I spent the weekend travelling between the couch, my bed, and the bathroom, and the only trips outside of the house that I mustered were to pick up some takeout Thai and Mexican food.
It was just that sort of weekend.
Finn had the illness first, and again I feel terrible for the little guy because he didn’t really have a good way of telling us exactly how he felt. So I assumed it wasn’t so bad and didn’t give him as much sympathy as he deserved. My bad.
Now the guy seems to be back in full spirits, though. I don’t think he had any ocean adventures this weekend, but that might all change in the next couple of weeks,as his birthday rolls around. I am pretty sure he is getting a wetsuit for the big day - now I just need to get one as well so I can keep up with him in the waves.
And with that thought, I am going to migrate off the couch and back to bed. Hopefully I will be at full strength by tomorrow, because we have a busy week. Not only are Finn’s cousins coming to town, but one of the world’s foremost experts on Finn’s communication system is staying with us for a few days as well. Accordingly, this is the wrong time for me to wallow around in my sweats feeling sorry for myself.
I’ve got stuff to do.
Usually, I am in control of my emotions and my reactions. Usually, I don’t lose my composure and maintain a pretty good poker face. Usually, I can at least predict how an event might affect me emotionally.
Apparently today was not a usual day, because all of my self-control really broke down. When I saw Finn surfing at Ventura, CA, my eyes starting leaking like the ceilings in Tina’s parents’ house (inside story). I was standing next to Tina’s mom, and I am not sure that she even noticed my tears. Maybe my sunglasses kept her from noticing, or maybe she was simply considerate enough not to say anything.
In any event, seeing Finn out on the surf with his new friends from the Best Day Foundation was so great, and so unexpected, that I just lost it.
I knew we were taking him to a surfing camp today, but I never really believed that he would get out on a surf board, even with assistance. I thought he would balk at wearing a helmet (hell, the kid will only wear a hat in arctic temperatures). I thought he would be too distracted to let anyone show him how to get on the board. I thought he would be too jittery and excited for anyone to risk taking him out on the water.
I thought his AS would make surfing impossible.
Yet again the kid proved me wrong. Yet again he showed that the biggest limitation he faces is the limitation of my imagination. Yet again he made me cry, even as he charmed the rest of the beach with his smile, his laughter, and his spirit.
So now we need to get Finn a wetsuit and maybe even a life jacket, because going to the beach will never be the same again. That kid won’t let anything, not even his disbelieving father, stop him from conquering the waves.
One other thing - if any of you ever has the chance to support the Best Day Foundation or attend one of their events with your child, please do so. The event was incredibly well organized, and the volunteers could not have been more engaging, expert, or simply wonderful. I cannot wait until their next local surfing day. And neither can Finn.
I normally try not to edit my thoughts too much as I write this blog. For me, the whole point is to be as open, honest, and uncritical as I can be. But I cannot do it this week. So much is swirling through my head, and so much of involves people outside of my family, that I think I had best keep my powder dry, at least for now.
So, instead of writing about all of those things that are leaving me really confused, I think I will just list some things that made me smile this week…
- Watching Germany win its match against Denmark on Fathers Day as Finn gave me his version of a massage (it involved him sitting in a chair behind me as I sat on the floor, pushing against my back as hard as he could with his feet, and then giggling uncontrollably whenever he managed to push my face to the floor);
- Noticing that Finn has ways of completely manipulating his mother. For instance, she hates it when he puts his hands or feet anywhere near her mouth, so she tries to ignore the behavior and avoid giving him any reaction. He is a persistent little bugger, and eventually she always gets exasperated and pretends to eat his hands or feet, which is exactly what he wants in the first place. It makes him so happy, and it makes Tina so frustrated. But he wins every time.
- Realizing that Finn will now point at his mother and laugh whenever anyone or anything makes a noise that sounds like a fart. Yes, I have been training him to do this for months, and yes, I am really proud to see that my hard work has finally bred results.
- Finally getting Finn to try apple pie. I don’t know why it mattered to me, and I suppose it would be better for his waistline and his teeth if he never had any pie, but I want my kid to enjoy some things that I really like. So tonight we finally got him to give the pie an chance, and he ate it like a champ. Good work, son.
I guess that is it for this week. I do want to wish my own father a wonderful Fathers Day. I may not know how much work you put into raising me, but now that I have a son of my own I think I have a reasonable idea. So thanks for putting up with me; I know that I was a royal pain in the ass. Hopefully I was worth it.
Recently, I found out that George Will has a son with Down Syndrome who is only a little older than I am. When his son was born and everyone realized that the child was disabled, the doctor asked the parents whether they planned on taking the child home.
I still think that question is pretty appalling.
I hear so many stories about special needs kids being ignored, mistreated, and generally forgotten. I hear so many stories about special needs kids stagnating and failing to live up to whatever potential they may have. And I think those two things must be related. And I certainly think that, despite all of my faults and all of my insecurities, I am better for Finn than any institution could ever be. And since Tina is 100 times the parent that I could ever be, then comparing her to institutional care is downright insulting.
But some people don’t give it their all. And some people give up on their children. All of it makes me sad.
But I do understand it, in some small way. It took years for me to reach solid ground after I first heard that Finn wasn’t going to be like the other kids. I didn’t know what to do with my anger, so I became surly and distant with the one person who could have helped me deal with it all, my wife. My marriage is still recovering from that.
My faith may never recover. I prayed for hours and hours, for months and months, and simply asked for my boy to be okay. For my boy to be normal and happy and intelligent. For my boy to be better than I ever was. And maybe he is all of those things. But it still feels like we were all punished somehow. Sometimes I look at Finn and see such a bright, compelling, attractive, and engaging kid and think that he could rule the world someday but for this one, tiny deletion in his genetic code. And then I get angry all over again.
Sometimes I think that I have grown so much over the last few years, but other times I feel like a fraud.
But at least I am determined to complete this ride with Finn, one way or another. And maybe Finn will rule the world one day. If he does, it will be because of his smile, his spirit, his determination, and his courage. Even little things show me how strong he is. Just today we went to a pool party, and the kid was both scared to go to the deep end of the pool and determined to go there anyway. And you know what, he did. He leaned on me and his mother. He fell off his floatation device, decided that being submerged wasn’t so bad, and kept on going. He is just that kind of kid.
So part of my job is to make sure that I never underestimate the little guy. I owe him that much. I will fail from time to time, and I will get despondent. But I will lean on others who are also dealing with similar challenges, just as Finn leaned on me today. And I will learn from those who have done this before me. I guess I just need some help from time to time.
(And yes, this is your semi-annual drunken blog post…)
Somedays, when I sit down to write this blog I feel so overwhelmed that I don’t even know where or how to begin. This is one of those days.
I think my unease stems from all that has happened in the last 60 hours or so. We had round two of Finn’s IEP on Friday morning. Work craziness kept me occupied for the 24 hours following that. Then one of Finn’s friends, a lovely little guy with autism, and his family came over to play. Then I had another 12 hours dominated by work. Then I made some burgers, nearly burned a pecan pie, and had some more friends over today, including an equally lovely little guy with Down’s Syndrome. Finally, I had a two-hour conversation with an Angelman Syndrome charity, watched Finn destroy a rose plant while participating on the call, and just now had the opportunity to sit down and write my weekly bit of exposition.
So the weekend has left me with a horde of different, conflicting, and unresolved feelings. And I don’t know how to get myself centered again.
Work has been frustrating and completely chaotic. Finn’s IEP was as discouraging as ever (how is it possible that so many people at Finn’s school still don’t understand him?). I remain inspired by kids with other disorders, and equally inspired by their families. I remain a little jealous of families with typical children. And as much as I love Finn, sometimes I cannot help but worry about his future. I guess it is because I love Finn that I worry about what has not yet come to pass (yes, I think I did just quote Lady Galadriel).
Finn has made me see people in this world whom I never before noticed. There were no special needs kids at my schools when I was a kid. I don’t know where they were, but they must have been hidden from view. Why were they hidden? What purpose did it serve? Was it really done just to prevent typical people from feeling uncomfortable? If so, that now seems like the crappiest reason imaginable.
I also wonder how much has really changed. Has the world truly become more accepting, or do I just live in a different part of it. Or, maybe, I just see more now that Finn has forced my eyes open.
Maybe Finn will think about these sorts of things one day. Maybe some of the things that we are fighting for right now, like inclusion for the little guy, will become so common as to be completely unremarkable by the time Finn is my age. I hope so.
For now, Finn’s thoughts seem to be concerned with much more tangible items. ”How might I convince my dad that going into the ocean is a really good idea?” ”Why does my mom get so upset when I rip the yellow roses off of the rosebush?” “Is anything more fun to play with than human hair?” “What’s the password for re-enabling youtube on my iPad?” ”I wonder what’s on TV right now?” “Which one of my parents is more likely to capitulate and give me cheese?”
At least that is what I believe he is thinking about.
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…)
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.
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.
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.