Newborn Brendon
Originally uploaded by Mike Fields

A friend asked me the following questions and asked me to answer them on my blog. (Hi Joan, your wish is my command).

I find I sometimes get bogged down in worrying so much about my child’s future. I think that’s a pretty common trap for us. How do you keep each day, each milestone in perspective? And I guess, how do you keep the faith when fear and the daunting illness autism is can sometimes bury us?

I think I’ll start with – What is a milestone? What is it’s purpose?

A milestone has no value in and of itself. It’s simply a marker. In that respect it’s a lot like a label. We often talk about the label of autism and what that means. The most important thing to know about a label is it’s useful for qualifying for services (Speech, OT, etc.). Beyond that, labels have limited value. Sure they’re a quick and easy way to describe someone. “My child has autism” might be something we share quickly with curious or disapproving strangers. For them, that’s the most they’ll ever know about our child. But a single label is a very broad stroke to paint someone with.

QUICK! What ONE WORD best describes you?

My guess is it probably took you some time (not very quick – that’s cheating) and you probably thought of at least a few words that describe you. Of course, then you had to weigh them out to see which one fit best. You’ll most likely acknowledge that what that ONE WORD is will change based on your feelings or surroundings or situation. We recognize that a single word cannot encapsulate the whole of who we are or who a child is, though at any given time a single attribute or trait can be our focus. And that brings us back to perspective.

How do we change our perspective?

We simply change our focus (I say “simply” recognizing that doing so isn’t always “simple”). Step back, take a look around. You won’t see just a single trait. You’ll see a whole person. And you’ll see that person’s place in your life. You’ll see their place in your family. You’ll even see their place in the world (if you haven’t seen it yet, keep looking. It may take time, but you will see it).

So, what does that have to do with milestones?

A milestone is just a label for a place an event. It acts as a marker – a point of focus. It doesn’t provide meaning without context. We can be so focused on an event, that we aren’t able to see it in it’s proper context.

One way to look at milestones, is in the context of milestones that have been passed. Take a look back and see all the events you’ve been through that led to a particular milestone. I think this is one of the blessings of having a child with autism. I think when parents of neurotypical kids look back on milestones that have been passed, they don’t see as many as we do. Why? Because we recognize more events as milestones. We share the joy of many more firsts because we don’t take anything for granted. We know the sweat and tears that go into the simplest most seemingly insignificant things. Don’t forget to look back and remember those milestones. Rejoice in them and celebrate the struggles, triumphs, and growth.

Another way to look at milestones, is in the context of those you have yet to reach. The challenge is not to become so focused on what lies ahead, that we miss the joy of being in the moment. If we forget where we are, how can we ever hope to reach where we want to go? That of course implies that we have somewhere we want to go. You and your child get to plot that course together (which is an exciting and rewarding process).

I like to say if you give a child a short ladder, you’ll never know how high they can climb. So set the bar high. Shoot for the stars. Celebrate where you are. Revel in where you’ve been. Does that answer the questions I set out to address? I don’t know. I hope this explains how I (try to) keep perspective. That’s not saying that I always have things in their proper focus and always know what to do. Nope, I still get lost plenty. But I have relationships: with my son, wife, family, friends, and God – that are all beacons to help me find my way again and help me keep the faith.

Me and Bren chatting last night just before bedtime.

Floortime – Musings on what I did wrong (and right)

My goal with this episode of Bren TV was to work a little on visualization. I wanted to help Bren stay happy and positive about school (which I thought might be scary, but to him it wasn’t at all – obviously) and I wanted to reflect on what happened. I wanted to help him create those pictures in his mind, and be able to share those pictures with others (by verbalizing them).

So, what did I do wrong? (Plenty)

1. I was in a hurry. Time got away from me and by the time I got my act together to film, it was bedtime. Dr. Greenspan has said “if you’re in a hurry, you’re not doing floortime.”
2. I asked lots of questions. Granted this was an interview (my mistake goes back as far as choosing the format), and Bren stayed engaged the whole time… but, by wondering aloud about his day (or sharing about MY day) rather than asking direct questions, I probably could have gotten more of his ideas and feelings, rather than simple direct answers. Mili (Bren’s OT) taught me months ago (yeah, you can see how well I learned the lesson) that asking questions is uninteresting, and can be stressful. Image this scenario: A person walks up to you and says “What’s your name?” “Where are you from?” “What do you do?” “Where do you work?” “What’s your favorite color?” “How old are you?”. You might feel put off by the interrogation and you probably would be looking for an opportunity to get away from the inquisitor. Now, imagine the same person walks up, makes eye contact, and smiles. You might say “hi”, or maybe you just smile back. Then the person says “Hello, I’m Mike.” (Surprise – the person is me – hehe) and then shuts his yapper for more than 2 seconds (sorry, I talk a lot – I’m trying to slow down). You may introduce yourself, or maybe you just smile again. So the person says “Hey, nice shirt. That’s my favorite color.” By this time, you’re (hopefully) thinking, ‘this Mike character is a little strange, but he seems harmless enough’ and you start to open up. Before long, you’re talking about the answers to the questions from the inquisition willingly, without the questions ever being asked.
3. My questions weren’t thinking questions. What I mean by that is they were usually questions with only one possible correct answer. Dr. Greenspan has said “if you ask a question you know the answer to, it’s not a thinking question.” An example of a non-thinking question: “How many people actually sleep in this room?” Dumb. A better question was “what was your favorite thing you did today?” But even better than that would have been something like “my favorite thing I did today was walking you to school” then leaving the door open for him to add whatever he wanted.
4. I missed the obvious cues that Bren was craving some motor activity and proprioception. Bren pulled me in (literally) but I didn’t stay with it. We should have done the interview on horseback, galloping around the room, or between wrestling moves.
5. I was impatient. Bren is really starting to open up more and share his thoughts and ideas. But due to probably some praxis issues, some visualization issues, and even some anxiety issues, he has a hard time getting things out sometimes and he needs lots of time to process. There should have been lots more dead air in the video. There should have been more times when I threw out an idea and then just gave him time to think and share.

I’ll stop there. It was only a 5 minute video, 5 mistakes is plenty.

So, was it a total loss? Did I do anything right?

1. We did work on visualization. We talked about his day, even if what we talked about was superficial. Next time I’ll dig down to a more affective level to help leverage his emotions with the visualization to promote higher level thinking and analysis.
2. I gave him some control. He picked the location, and used the remote to turn the camera on and off. I want to start getting him BEHIND the camera. I want this to develop into something that is HIS vision, not mine. He’s not quite comfortable with the camera yet, but he does like the remote.
3. We spent time together. You can tell even if the questions were superficial and the activity was mundane, we both really had fun just being with each other.
4. We shared the video with others. Bren loves watching himself on video. He loves watching it with other people and talking about what he did on camera. So, those 5 minutes of video have turned into an hour or two of emotional shared experiences between Bren and others. And that does even more to help develop his ability for visualizing and relating.

So, I guess the take away for me in this is… sure I made mistakes – things that I know I could have done better. But I also had a good time with my son. And that’s the most important thing. I was hesitant to put this video up because it is such a poor example of floortime. But then I decided that’s precisely why I should share it. Watching it helps me learn a lot about how I interact with Bren. And hopefully watching it will help you learn a little bit too.

A New Hope
Originally uploaded by Mike Fields

Each day we’re faced with new challenges and new opportunities. Each day we have a chance to do more, to be better, to grow beyond what we were just the day before. I love the idea of new beginnings. Mostly because I make plenty of mistakes. I love the idea that I can start fresh, that I can try it again.

Even so… beginning anything can be scary. In fact that’s usually the hardest part of something for me. Once I get past the fear and actually start building momentum; I usually find whatever I was starting isn’t as difficult as I’d imagined. But that fear of struggle, or even failure still likes a front row seat to whatever challenge I’m facing.

Well, I’m getting ready to start Grad School, or as I tell Brendon – 17th grade. This is a very exciting (and frightening) time for me. It’s been a long time since I was in school. I know I can do it! But I also know it’s going to be a lot of work. When I look at the big picture all at once (two years of classes, the cost of tuition, the time that will be taken away from my family) I have to admit it can be pretty intimidating. If I can just stay focused on “the next step” though, I’ll be fine. I have to approach this thing one step at a time. And eventually I’ll be able to look back and see the big picture with a new perspective – an appreciation of what I’ve been through and where it lead me. Grad school starts on August 21st. I’d be lying if I said I wasn’t a little nervous.

Brendon started 4th grade today! Was he nervous about school? Did he think “oh no, I have nine more years of math -geometry, algebra, and trigonometry; and science – biology, chemistry, and physics; not to mention the awkward teen years – making friends, losing friends, that first kiss, that first break-up… And that’s not even counting college!”? NOPE! He went right to sleep last night – no insomnia, no nightmares, nothing. He woke up in a good mood this morning – his usual chipper self. We walked to school and as we got near the door he just turned, smiled, waved goodbye, and headed off down the hall. Was he intimidated? Nope. It’s just another day, another group of kids, another teacher. It’s just another challenge he’ll face. It’s just another challenge he’ll conquer.

Bren’s whole life has been a series of little steps. Each one is a new start, yes. But it’s also a step that builds on every step that came before – steps that keep leading him higher and higher. I’m so proud of him. I’m so glad I’ve been there to take those steps with him – to help get him ready for the next, and the next, and the next. As I head back to school myself, I’m so glad he’s been there to take those steps with me – to help get me ready for the next.

Each day, each beginning, each step, brings with it a new challenge, a new opportunity… and a new hope.

Lockup
Originally uploaded by Mike Fields

This is something I wrote for the ladies at Chicago Floortime Families. Please go visit their site. They have lots of great information there (including this article on using process to teach).

———-

Sometimes (often) when working with our kids, we run into an idea that is hard to understand or even explain. “Thinking out of the box” makes a nice catch phrase, but how do you actually DO that? Well, sometimes it’s a stroke of magic (luck) and sometimes it’s an idea from somebody else. One strategy that I’ve found fits almost any situation is the idea of playing dumb. Dr. Dunbar likes to explain it in terms of the old Peter Faulk television detective Columbo (if you’re not familiar with Columbo, go rent an episode). Columbo was a master of playing dumb.

Columbo had a knack of fumbling through a case until, in frustration, the killer would confess and explain to Columbo how clever his plot was since Columbo was too naive to figure it out for himself. That’s the irony of playful obstruction though. Columbo wasn’t really clueless and wasn’t really fumbling through the case. Rather he used his apparent naivety to lure the killer into lowering his guard and opening himself up. That’s the irony of playful obstruction, or playing dumb. It usually requires more thought, discipline, and creativity to do the WRONG thing than to do the right thing.

Floortime is based on intimacy, emotion, shared experience… or more simply – communication. In typical communication, we make inferences from context, tone, past experiences, etc. This frequently makes communication more efficient by letting us jump to the point or intent of the exchange. When a husband grunts and points to his wife’s dessert at dinner, his wife can easily recognize the fact that if she doesn’t eat quickly her food will soon be stolen. This kind of shortcut in communication runs counter to what we are trying to promote through Floortime. At the spring conference in 2005 I remember a parent asking Dr. Greenspan how to use floortime to help a child get dressed quickly for school. Dr. Greenspan answered without hesitation “If you’re in a hurry, you aren’t doing Floortime.”

So, we have to turn off our instinct to anticipate what our kids are communicating to us. Or maybe I should say we have to turn off our instincts to RESPOND to what our kids are communicating to us. What I mean by that is, the more we understand about their wants, needs, what they are trying to tell us, the more able we will be to respond to their communication. But, rather than jumping to the point and shortening the exchange, we want to lengthen it. We do this by playful obstruction, or acting like Columbo. We really know the answer (sometimes), but by playing dumb, we can woo our child into lowering his guard and opening himself up.

Here’s one of the most fun exchanges my son Brendon and I have had. This was last summer (2005) when Bren was 7 years old and taking swimming lessons. He was really doing well, so his instructor Grace kept challenging him. By the last 5 minutes of the lesson, Bren was just so overwhelmed from having tried so many scary things that he couldn’t do anymore. Grace wanted him to “play a game” where he pushed a ball by splashing (he wasn’t allowed to touch it). Bren got really upset and started crying. He said “I just can’t take any more of your ridiculous rules. It’s too hard. Please can I have rule free-fun for the next 5 hours?” So Grace abandoned the idea of the game and spent the last 5 minutes talking to him and helping him calm back down.

This was something Bren was having trouble with at school too. He was really being pushed and challenged a lot. So I tried to think of a way to help him not feel so oppressed by rules. I had to find a way to show him that rules could be fun too. In a rare moment of inspiration, I had an idea. As Bren was getting out of the pool I told him “it’s ok buddy. We’ll have rule free fun for the next 5 hours.” So I started walking towards the ladies locker room to change. Bren got a hint of a smile on his face and said “You’re not a woman. You have to go in the men’s.” I realized then I had him hooked. Now, I could have stopped right there and gone onto a long winded explanation of how rules can be good (which is my natural tendency). Instead I fought the monstrous impulse and tried to drag out our discussion. I knew if Bren was TOLD about rules, he might get it, and he might not. But if he was able to internalize it, to really feel how rules can be good or fun that it would be a much more effective learning experience. That’s what Floortime does. It helps you know something in your heart, in your soul, not just in your mind.

So, I protested “Hey, no fair! That’s a rule. You said rule-free fun!” I saw that hint of a smile again. We went to the men’s locker room and got changed then headed out to the car. I handed him the keys and climbed in the back seat. He giggled and said “I can’t drive, I’m just a child. I don’t have a license.” I said “Hey, no fair! that’s a rule. You said rule-free fun!” But I conceded, swapped places, and started driving. I told Bren I didn’t want to drive on the road, so I drove in the grass instead (we live in the boonies, so it was safe. (Don’t try this in Chicago). Bren started laughing yelled “NO! You have to drive on the road silly!” So we had another exchange about rules. When we eventually got to our street, I told him I didn’t want to drive forwards, so I put the car in reverse and drove backwards down our street (again, this is out in the boonies where you can act like an idiot and not be in danger). We had yet another exchange about rules. When we got near our house, I just parked in the middle of the cul-de-sac and got out. By this time he was laughing so hard I figured he’d need to change his pants. He kept telling me what I was doing wrong and I kept protesting that if HE didn’t have to obey any rules for 5 hours, then I shouldn’t have to either. But I moved the car anyway… into the woods behind our house. Finally, I parked the car in the garage and we went upstairs. It was time to eat, so I served him dinner with his drink in a bowl and food in a cup.

That was years ago, but we still talk about things you have to do even though you don’t want to, or things you simply are not allowed to do. Even though it was something that was really hard and scary for Bren, we were able to discuss easily for an hour and we both laughed almost the whole time. It helped Bren conquer some of his fear and insecurity about being out of control. He knows now that rules can help GIVE you control too. And, he understands, deep down he REALLY understands, that “a li’l bit o’ rules is ok.”

Skylight
Originally uploaded by Mike Fields

Here’s something I wrote shortly after Bren was first diagnosed with Autism. To have a greater appreciation for where we are, it’s helpful to look back at where we were.

———

Every now and then, the world turns against you. Things are sailing along very smoothly. Then, you get a nagging feeling, deep in your gut. You stop and listen for the wind, but there is none.

Brendon is two years old. He seems happy. He smiles and giggles a lot, but he never has much to say. He is so strong and independent already, we brag. While he enjoys being around us, he can easily play happily and quietly alone for an hour or more flipping through the pages of his books.

He is also very bright. He runs simple errands around the house for Mommy and Daddy. Like his mother, he appreciates neatness and order. He spends his time lining up his toys or putting them away in containers. But he is not just his mother’s son, he is also his father’s son; and as much as he likes cleaning up, he also enjoys dumping everything out of the containers. His appreciation of order is matched only by his penchant for chaos.

He’ll talk when he is ready; boys are just a little slower than girls (or so we’re told. Brendon is our first child).

Perceived authority – when evaluating the credibility of a message, one of the greatest influences is the credibility of the messenger. If a child says the state of Florida is larger than England, it is not as believable as if you heard it on the evening news, but the fact remains. The truth doesn’t change, only the perception of truth. Humans are paradoxically extremely liberal and extremely conservative in their perception of authority. They consider no one credible until proven. However, once proven on one subject, the leap to implicit acceptance of credibility on all subjects seems ludicrously short.

“He should be talking more,” everyone tells us, “you should have his hearing checked.” We know his hearing is fine, besides, the doctor says he is doing fine, boys are just a little slower sometimes.

“Doctor, we’re also concerned about his eating. He is really, REALLY picky and has a hyperactive gag. He’ll throw up rather than just spit food out,” we say. “Kids can be picky, but he seems to be thriving. He is growing and gaining weight at an appropriate rate. He’s fine. Bring him back in a couple of months.”

As the discomfort of the silence slowly ebbs, complacency is replaced by sudden terror. Your apathy has been ripped from your grasp and you experience a feeling not unlike that of falling. You’ve left the calm and are now staring straight into the eye of a storm of emotions.

Brendon’s hearing turns out to be fine,” we smugly divulge to the skeptics. They questioned our ability and challenged our authority as parents. No one knows better than us what our son needs. At least, that is the chest pounding facade that we display for any other primates that venture too close to the glass.But it is too late; we have been infected. The doubt and concern devour our confidence (or is it arrogance) like a virus. But something is there, isn’t it? Is it hiding behind the sparkle in Brendon’s eyes, or behind the gleam in his smile? Or worse, maybe it has been hiding behind the pride in our hearts. Has that gift to our son been turned against us and against him?

The Internet documents numerous demons that could be after our son (sometimes too much information can be as bad as too little). Yesterday, we knew there was nothing wrong. But today… today, we diagnose Brendon with dyslexia, dyspraxia, ADD, ADHD, OCD, and SI disorder. This can’t be. We just need to find someone to tell us we were right, Brendon is fine, and the demons are safely confined to our imaginations.

Luckily Chrystine works with somebody who specializes in childhood development and he can show us that the demons we thought we saw were only shadows.

“PDD-NOS. It’s a form of autism,” he says. His words feel dry and bitter, like a lead weight in my mouth. I slowly choke them down, with great difficulty. Now they press down in my stomach, burning like an iron. “It’s a permanent neurological disorder and Brendon will have some… limitations.”

Water crashes over the bow threatening to sweep you into the deep, cold ocean of the unknown. The solid ground you were standing on is now lurching so much you are nauseated. Words and thoughts blur together in a constant deafening thunder and knock you off your feet with gale force.

Limitations? He will never be Leonardo Da Vinci type limitations? Autism – that was Rain Man. Is that Brendon’s future, Wheel of Fortune and People’s Court? We refuse to accept that.What does autism mean, I don’t want a vague diagnosis. I want a quantifiable answer and a quantifiable prognosis. But none is offered.

You feel like the storm has calmed somewhat. Then again, it may just be that you are focused enough that the storm does not distract you. Whichever it is, you know you haven’t been desensitized. Your thoughts and emotions, while labored, are razor sharp, more keen and focused than you thought possible. Maybe it just takes true passion to achieve. You believe that is the case. The fear and uncertainty are still there, but they are beaten into submission by will and determination.

We have invested much time and energy in learning about this demon. We have learned its strengths and its weaknesses. We have also learned our own. We know this is not a fight we can win alone. We have enlisted an army that is strong and knows the demon’s weaknesses. And we have God on our side.

Eventually, the storm rages again. But it no longer inspires fear. It now forges your determination. Still, you can’t help but recognize the nagging feeling in your gut. You remember the feeling from the calm before the storm. While it is familiar, there is something different. You stop and listen to the wind again. But, unlike before, you hear it. Then you realize what is different about the nagging feeling in your gut. Instead of shrinking in the face of the storm, you boldly and defiantly raise your sails. The difference in the feeling is faith and love.

For all of us, this battle is personal. Someone we love is a hostage and he will not be left behind. Our confidence has returned. We are emboldened by Brendon’s progress every day. He is getting closer to us… every day. We will win.

Truth be told, we have already won. We have conquered fear and doubt. No matter where this journey takes us, no matter where it ends, Brendon knows we love him. And our love is permanent. And without limitation.

DCFL 2006
Originally uploaded by Mike Fields

DCFL – (acronym) Dreaded Christmas Form Letter
——–

This has been another exciting year for us. It started with my brother’s wedding on New Year’s Eve. Dave and Alisa were married at a beautiful historic chapel on Jekyll Island. Bren and I were very sharp in our matching penguin suits (Chrystine was pretty too). I’m really proud of Dave. I know I’m older, but in a lot of ways he’s been the mature, responsible one. I’m glad he’s found someone special to settle down with, and I pray that he and Alisa will be as happy and blessed as Chrystine and I. I know being with Chrystine has made the hard times easier and the good times that much better. We’re getting ready to celebrate our twelfth anniversary. I know there’s no way I’d rather have spent those years and no one I’d rather have spent them with.

“You can do all these amazing things, and sometimes you think that you will burst wide open…, don’t you? There’s one thing I know for sure, son. And that is, you are here for a reason.” – Jonathan Kent

Bren has had another amazing year too. He has been in a wedding on Jekyll Island, visited the Statue of Liberty, seen snow in Times Square, and seen New York City from the top of the Empire State Building. He saw first hand in Orlando that it’s A Small World after all (and sometimes an annoying one) and zipped through the stars on Space Mountain. He’s seen many of the wonderful creations on this small world. He saw the graceful belugas and the monstrous whale sharks at the world’s largest aquarium right here in Atlanta (small world indeed) and saw his first shows at the Fabulous Fox Theater and the Alliance Theater. We’ve picked up some new hobbies this year too, besides traveling and sightseeing. We’ve started hiking for one. If I’ve been a good boy this year, Santa might bring me a GPS for Christmas. Then we can start geocaching. We’ve also started something called Bren TV. We film fun activities or visits in a pseudo talk show / documentary type style. Bren really looks forward to his special guest stars, and he LOVES watching previous episodes with family and friends. One of my favorite things we do together though is build with Legos. We’ve built Lego race cars, garages, vehicles and hideouts for superheroes and super villains, and weapons to fight mutant dinosaurs. Now we need to build some shelves so Chrystine can see her dining room table again. Bren is developing so many skills and interests. It’s fascinating to see him grow. Today he told me he doesn’t know what he wants to be when he grows up. I told him “that’s ok, you can be anything you want to be” (I’m 37 and still don’t know what I want to be). Over the years, he has demonstrated boundless potential. One thing is certain; whatever career Bren chooses, he’ll do amazing things.

“You will be different, sometimes you’ll feel like an outcast, but you’ll never be alone. You will make my strength your own. You will see my life through your eyes, as your life will be seen through mine.” – Superman

Bren went to summer camp for the first time this year. The youth minister at our church is camp director so I got to be one of the counselors in Bren’s cabin. One whole week with no computer, TV, or video games; I’m not sure how Bren made it (and by “Bren” I mean “I”). At the beginning of the week he was scared to try new things and afraid of not being as good as other kids. But they really embraced him and encouraged him. He did so many things that just days before he knew he couldn’t do. By the end of the week he had led a prayer in front of 150+ people and was participating in and enjoying all the activities. On the last day of camp we watched a video of the week (one of the guys at church is a professional videographer). When a clip of Bren was shown (an advantage of being friends with the videographer), everybody clapped. I was so proud I thought I would burst wide open.

“They can be a great people, Kal-El, they wish to be. They only lack the light to show the way. It is for this reason above all, their capacity for good, I have sent them you—my only son.” – Jor-El

Bren’s developmental psychologist said something even more enlightening than usual at our last visit; “We only grow when we’re stressed.” When our bodies encounter prolonged resistance, our muscles grow in response. Likewise, when we face adversity, we grow intellectually, emotionally, and spiritually. For Bren to reach his full potential, we have to let him learn to succeed, and fail. We have to let him stretch and explore. Sometimes he’ll get hurt. But he’ll learn so much more. His self-esteem will not be based on outside influences. Our job as parents is not to shelter him, even while we try to make sure what he takes in are positive things. Brendon’s job (our job as individuals) is to figure out how best to use what’s inside. That’s the source, the fuel for growth. True strength and confidence come from within.

“You wrote that the world doesn’t need a savior, but every day I hear people crying for one.”- Superman

Sometimes, we all feel like we don’t fit in. Sometimes we all feel alone. But we all possess the potential to do amazing things. We only need the courage to face failure. It makes success that much more significant. And that makes us stronger. As stronger people, we are better prepared to make a positive impact in someone else’s life. We never know when our strength will be the lifeline someone else is crying out for.

Merry Christmakwanzukkah!
Mike, Chrystine, and Brendon

Brendon-Lion
Originally uploaded by Mike Fields

It was his 8th birthday, and every party he’s ever had has been family only (aunts, uncles, cousins, grandparents). You see, Bren has always had trouble in crowds. He’s been to birthday parties for other kids (classmates) but he has always spent the first hour of the party hiding someplace quiet by himself. Over the second hour, he would usually warm up a little, have some fun, but then quickly burn out (and usually be exhausted for the rest of the day). So, we were a little nervous about having a party for him. But, developmentally, his interests are pretty age appropriate and he is pretty aware of kids around him. I think he’s starting to see he’s different, but he wants to be like them.

Anyway, we invited his class from school. We were worried that

1) nobody would show up to a party for the “weird kid”, and paradoxically
2) everybody would show up and he’d be so overstimulated that he’d hide in his room and miss his own party.

So, we did a couple of things. First, Chrystine came up with an animal theme (Bren LOVES animals) to help engage Bren. Second, Chrystine found a local pet store that “did parties”. Basically, the owner brings out a bunch of animals, talks about them, and lets the kids pet/hold them. Chrystine also had the very smart idea to have that part of the party FIRST. The idea was to have something engage Bren that would hopefully “distract” him from being overstimulated. Next, I made some cool invitations (trying to “woo” the other kids to the party) by “Photoshop-ing” a picture of a lion so that it had Bren’s smiling face! Chrystine made cupcakes and I took them to school for snack a week before the party for Bren’s birthday (his actual birthday was 1/5, his party was 1/14) to kind of advertise/drum up support. Well, 14 (out of 23 kids) sent an RSVP (and Bren’s regular ed teacher, his aide, and his special ed teacher too). We thought that was a good size party. Quite a few friends, but not too many. Plus, he’d have an extra safety net with his teachers, and they’d get the added bonus of seeing how we work with Bren in a challenging situation. Oh, finally, we took Bren to the pet store so he could meet Miss Rhonda and see the animals she was bringing and make any “special requests”.

So far, everything was clicking. The kids loved the invitations (“COOL PICTURE!”), and loved Chrystine’s cupcakes, and were really curious about the “special animal guests” mentioned on the invitations.

So, the 14th rolls around. It’s party time (2pm so we didn’t have to worry about lunch. We just had chips and juice and cake. Saved money, and it was one less thing to stress Bren out about – he’s a picky eater). Rhonda showed up with the animals a little early. Bren was in HEAVEN! He was asking questions about the animals, and TELLING Rhonda what HE knew about the animals. The kids slowly began to trickle in. The first few parents said “is it ok if we just leave them here?” We said “SURE!” Then they’d say “well, we’ll just stay a few minutes to make sure they’re doing ok.” We said “SURE!” Well, 30 minutes later (what was supposed to be 2/3 of the way through Rhonda’s 45 minute presentation) we had the 3 teachers, the 14 kids who RSVP’d, 3 other kids who didn’t RSVP, 5 younger siblings, and most of the parents packed in the living room anxiously waiting their turn to hold the ball python, ferret, chinchilla, rabbit, starfish, horseshoe crab, box turtles, gecko, and a dozen or more other animals that I can’t remember. 50 plus people in 1 room with Bren. Since he was the birthday boy, Rhonda let him see each animal first. Oh, I almost forgot, several kids jockeyed very early to sit with Bren (even before they knew he’d get to go first). I stayed close to him and talked very calmly and quietly while giving him constant proprioception. He LOVED it!

After Rhonda finished with the animals (45 minutes turned into about 75-80 minutes) all the kids washed up for cake. Only about 30 minutes left! We were almost home free. Then, Bren told me in a very tired, quiet voice, “I’m just going to go to my room for a few minutes.” I told him he’d done GREAT and asked “is it too loud?” He said “yeah.” I told him, “sure buddy, you can go take a break in your room.” So, I made the host rounds making sure everyone was happy (Chrystine is an AWESOME hostess – she was doing a great job helping the kids and entertaining the parents). Then I thought I better go check on Bren, the party has gone great, I don’t want it to unwind now. I went down the hall to his room and opened the door to see if he was ok. When I opened the door, he was beside his bed with a lightsaber. Another kid was up on his bed dueling with him. Two other kids were cheering them on, and then Darth Vader (a 5th kid wearing Bren’s Vader helmet) pushed passed me and ran out of the room (apparently vanquished, but he quickly returned). I could tell I surprised Bren when he said “WHAT!?!” (still holding his foe at bay). I said mostly to myself glowing with pride “nothing buddy, you don’t need me. I’ll leave y’all alone.” I went and interrupted Chrystine and told her “sorry, but you have to go check on Bren RIGHT NOW!” She went running down the hall, with Grandma in close pursuit.

The next time I saw Chrystine and Grandma they had shiny red eyes and stuffy noses.

It was the best kids party ever. (I heard several kids AND parents confirm that thought on the way out).

DCFL2005
Originally uploaded by Mike Fields
DCFL – (acronym) Dreaded Christmas Form Letter
——–

Louis H. Sullivan once wrote “Form ever follows function.” The guy was mentor to Frank Llyod Wright and gets credit for creating the modern skyscraper. Maybe he was onto something. (Stay with me, I promise this is going somewhere.)

So, what functions were we following this year? Sticking with the architecture theme, let’s just start with the foundation. Chrystine and I have both been teaching Sunday school classes at church. Chrystine is working with the 2nd and 3rd graders (Bren’s class, not coincidentally) and I’m working with the high school group. Chrystine is really good with the kids. That’s really no surprise, since she’s knows so much about kids from being a mom and a nurse… and married to me for 11 years (12/17). I think that helps me with the high school group too though; I haven’t figured out I’m old yet. That means I can still talk to them about anything from Moses to Napoleon Dynamite. Every now and then I do see their eyes start to glaze over when I go off on one of my geek tangents and forget what my point was, but I’m working on that. One of the ways I’m working on that is: I’ve gone back to school. I want to be a better teacher (and husband, father, son, brother, friend, …) so every Tuesday night I drive to the other side of Atlanta to go to Bible college. I have to write lots of papers, but I don’t mind since I’ve always been interested in writing anyway. Who knows, maybe one day I’ll get something published (and I don’t mean my picture on the wall at the post office). I do have something I’m writing now (besides the DCFL). I’m busy trying to construct the PERFECT toast for my brother’s wedding! That’s right, Dave and Alisa are getting married. They met on New Year’s Eve, he proposed on New Year’s Eve, so I guess it makes sense for them to get married on New Year’s Eve. Shortly after Christmas this year, we’ll be heading down to Jekyll Island so I can play “best man” to the better man and welcome Dave to the joys of holy matrimony and building a life with someone.

Chrystine has a new function, kinda. A few months ago she got promoted to Assistant Nurse Manager at Egleston. She’s working more hours now (which means I have to pretend to be more mature and responsible), but she’s really enjoying herself and just bubbling with confidence. Her new responsibilities really just build on what she’s been doing for years. Her promotion a kind of validation for her. It says she’s a good nurse and is valued for her skills. And, It’s validation in other ways as well. Chrystine had applied for this same position 5.5 years ago, right before Bren was first diagnosed. She ended up cutting back her hours to make sure Bren got the developmental foundation and support he needed. The fact that she can increase her hours again is a testament to how good a job she has done with Bren and how far he has come in 5.5 years.

Speaking of Bren, this year we’ve seen him building success on top of success. It’s been great seeing him having fun in second grade after the nightmares of last year (we love his team at school this year). Outside of school, there have been many developments as well. This year Bren has been to Sea World, Ruby Falls, Rock City, the Atlanta Zoo, the Jacksonville Museum of Science and History, Fernbank Science Center, Fernbank Natural History Museum, the Center for Puppetry Arts, Callaway Gardens, three different IMAX theaters, and the Tennessee Aquarium (we haven’t been to the Georgia Aquarium yet, but we hope to get in there before the end of January). I probably left some things out, but you get the idea. He’s also been taking swimming lessons, horseback riding, and we’re looking into possibly doing some gymnastics. We did a couple rounds of a really intense listening therapy called Tomatis which is weird sounding filtered music that stimulates a certain part of the brain, but we’re taking a break from vision therapy. Sounds like he’s about ready for the Trials, I know, but after what happened to that Skywalker kid, the Council has decided that we need to invest at least as much into developing a padawan’s emotions as we do developing their skills with the Force or a lightsaber (I’m DEFINITELY not ready to let Bren near a lightsaber).

So, we’ve had lots of functions this year. Has form followed? Well, Frank Lloyd Wright said: “Form follows function – that has been misunderstood. Form and function should be one, joined in a spiritual union.” Once again, the padawan teaches the master. The moronal* is form isn’t automatic. Whether you are building, teaching, trying defeat a Sith Lord, or just making it through the day; if you don’t start with a solid foundation and sound structure, good intentions just aren’t enough (ex. that Skywalker kid). We still have a long way to go, but Bren has already come so far (as have Chrystine and I). Our faith and love make a strong foundation. And recognizing where we are and where we want to be have helped us identify the work necessary to get us on our way. It’s the spiritual union between form and function that gives meaning to whatever you’re building. Now, break time is over! Get building!

Merry ChristmaKwanzukkah*!
Chrystine, Mike, and Brendon

PS. I didn’t kill our beagle Holly this year. For some reason Bren likes her. So as a favor to him, I let her breathe, for now.
PPS. Speaking of Jedi, if I find who wrote “Onli-Wan Cannoli” on my statue in the Archives, I’ll show THEM “Dark Side!”

* Moronal – (n.) Wisdom from the clueless [informal blend of moron and moral]
* ChristmaKwanzukkah – (n.) Holiday season [informal blend of Christmas, Kwanzaa, and Hanukkah]; “Festivus Plus”

DCFL 2004
Originally uploaded by Mike Fields

DCFL – (acronym) Dreaded Christmas Form Letter
——–

One, Seven, and Ten. Those are the BIG numbers this year (not necessarily in that order). Let’s start with:

One – Brendon started 1st grade this year.

It was a bumpy start. First was the summer school nightmare. It was a new program the school was starting up with the YMCA. The idea was good but the implementation was terrible. The program the YMCA had wasn’t bad, and they had good people lined up. But the required information (which kids needed what support) wasn’t delivered by the school to the people that needed it. Brendon had a hard time and that didn’t need to happen. Hopefully though, since this was the first year, they got the problems solved and next summer will be smoother. Once school started, things weren’t much better. Brendon started the year without his own aide. “Hey, we’re going to teach you how to swing on a trapeze – don’t worry, we’ll set up the safety net after we see if you need one”. So, Brendon stayed really stressed out and struggled for the first three weeks of school. Then they said “hey, Brendon really needs his own aide and maybe we shouldn’t place him in the rowdiest class.” We were happy they finally saw the light (a light we pointed out six months earlier). So, first grade has been really tough. Brendon has straight A’s, but he is so worn out when he gets home from just holding it together, that about the only thing we can work on at home is helping him unwind and deal with his emotions.

Seven – Brendon will be 7 next month.

It hasn’t been all work though. Brendon is growing so quickly I can hardly believe it. He took swimming lessons at the Y this year and had lots of fun. We’re going to sign him up for more lessons next year. It’s a great social activity, it’s really helping build his confidence and self esteem, and it’s great therapy too. Speaking of therapy, we added vision therapy to Brendon’s schedule this year. He’s having some problems tracking and with convergence (getting his eyes to work together when things are close up). But as we’ve seen time and again, when he gets proper support Brendon in incredible. He’s made huge strides with his vision just like with every other obstacle ever been placed in front of him. We go to Roswell for vision therapy (because his therapist is top notch and her group came highly recommended). After his therapy, we usually go to lunch, play some putt-putt, and go to Andretti’s speed lab to watch the go-karts and play some video games. He’s always worn out when we come home, but it’s not hard to see he’s having a great time.

Ten – This month we celebrate our 10th anniversary.

I’m still surprised she put up with me for this long, but Chrystine and I are going to New York for our anniversary. We’re going to take one day to go visit some of her relatives and several more just to cruise around the Big Apple. I know it’s going to be tough for me with the cold weather and no grits for breakfast, but I knew when I suggested the trip that it would win me lots of points (maybe she puts up with me for the one time every ten years when I have a good idea).

So if you crack this nutshell, you’ll see that this was our 2004.

I almost forgot to mention Holly, our beagle. She’s one year old (still just a puppy). I used to think I was a cat person. Then we got Holly, and I realized… I WAS RIGHT! Anybody want a dog? Everyone says after two or three years she’ll settle down. So if I can just keep from killing her for another year or two maybe she’ll turn into a good pet. Boy am I ready for the trip. I can use a getaway. The holiday season has just gotten so hectic. I find I’m spending less time reflecting on how blessed we are [I am] and being thankful, and more time being overwhelmed into near apathy. (Can you be near apathetic? Isn’t that like kinda pregnant?) I’ve tried to take on more responsibilities this year and now when I look back, I see that I haven’t done the so well. Have you ever noticed that when you juggle too many things, you drop the most important ones first? I guess you just get so used to the feel of them that you think juggling them is effortless. Note to self: effortless shouldn’t mean less effort. Thankfully, God gave me a Brendon to help point out my failures (if you don’t realize you’ve fallen off the horse, how do you know to get back on). One of my favorite things Brendon says is ironically something that really bugs me when he says it. “Just be happy. You have to be a happy man.” Usually he’s imploring me with those words because I’ve gotten angry. As I lecture down to him about what he’s done wrong, his words burn my ears like red hot pokers. They always throw me off. Suddenly I’m painfully aware of the real reason I’m angry. Almost without fail I have some hand in what has happened. By being impatient, or selfish, or stubborn, I invariably turn a mole hill into a continent. I totally disregard the situation or environment and what I have learned over the last four and a half years about how hard Brendon has to work. He has come so far, that sometimes I forget how we got here (hint: quick tempered narcissism wasn’t involved). But, I’m the grownup, I’m supposed to be the mature one. (Yeah, I know, I can’t even type that with a straight face). So it really is up to me. I can learn from my failures and instead of wasting time fuming about them, I can be mature and responsible (well, I can pretend to be anyway) and learn from my mistakes. The only way to see past our mistakes is to look forward. Which brings us to the moronal2: regardless of what has happened in your life, remember blessings come in all shapes and sizes. And even hard times are a chance to learn and grow. As long as there is breath in your lungs and hope in your heart, “just be happy. You have to.”

Merry ChristmaKwanzukkah!
Chrystine, Mike, and Brendon

DCFL 2003
Originally uploaded by Mike Fields

DCFL – (acronym) Dreaded Christmas Form Letter
——–

If you see a year lying around somewhere, please let me know? I don’t know where mine went. I suspect Bren must’ve eaten it. He’s getting big. He weighs about 60 pounds now. Fortunately, unlike his Dad, he’s increasing his height rather than his width.

I figure before he finishes elementary school he’ll be taller than Chrystine. Speaking of elementary school, Bren started kindergarten this year. He’s doing great in a typical kindergarten class with an aide. Peggy (his aide) has been stepping back some because Bren wants to “do it myself.” Peggy tells us the other kids in his class really like helping him when he needs it too. So it seems that inclusion is working (we are truly blessed to have such wonderful people and support programs available). Bren has friends who like to work and play with him. We’ve already been to several birthday parties this year, including roller skating (Chrystine could’ve been a waitress at Arnold’s on Happy Days, except of course that she wasn’t around in the 50s… and since Arnold’s wasn’t real, neither was it) and laser tag. Bren’s progress has just been amazing. We couldn’t be more excited. I don’t know how much has changed since I was in kindergarten (I can’t remember last week, much less last century), but Bren has a lot of homework. The reading is easy for him, but there is a lot of handwriting too. He struggled with that at first, but he’s gotten much better. One of his favorite things to do now is connect the dots. So just chock writing up as another obstacle that Bren is conquering. He really is a special kid. He teaches us so much every day: like, it’s easier to do something if you don’t know you aren’t supposed to be able to do it. To Bren, an obstacle isn’t something blocking his path; it’s just something else to climb on. It makes me wish for that childlike innocence, confidence, and sense of hope and wonder. It’s not like that is taken from us as we get older. Somewhere along the line we willingly trade it in for the weight of skepticism and doubt. Whose idea was that anyway? And why do we give it up so easily? It’s a bad trade.

Recently, we decided to reclaim some of that hope and wonder. We went on our first real family vacation. We took a three night Disney Cruise (the ship was named the Disney Wonder coincidentally, or not) to Nassau and Castaway Cay. My parents went with us. Chrystine’s parents weren’t able to go, but we got to visit with them before and after the cruise, so that was nice. We’ll have another big family vacation where everybody can go soon, I know. Still, we had a great time. I think my favorite part of the trip was the aquarium at Atlantis in Nassau. Walking through the glass tunnel with sharks swimming overhead was just too cool. Bren’s favorite part was the three story water slide into the Mickey Mouse shaped pool on the top deck of the ship. He must’ve gone down that thing a hundred times. The stops in the Bahamas were fun, but there was a lot to do on board too. Bren played in the Oceaneer’s Club and was in a little musical production for the parents on stage with Mickey Mouse. We spent lots of time in the pools and arcade, and way too much time in the restaurants. We also got to see a movie onboard and a big budget Broadway style musical on the last night. I would highly recommend a Disney Cruise. It’s a great family getaway. (My next door neighbor is a travel agent if you need a hook-up).

I guess the last bit of news we have is that we have a new member of the family. SETTLE DOWN, it’s just a dog. We now have a seven week old female Beagle named Holly (since we got her “for Christmas.”). I wanted to call her Santa’s Little Helper, but Chrys nixed that. We tried for the last couple of months to find the perfect dog. We visited breeders and rescues, but a simple newspaper ad we spotted before dinner on a Friday resulted in us taking our own puppy outside at 2am Saturday morning. (note to self: get a new puppy when its warm outside).

And that’s me! So, we come to this year’s moronal2 about obstacles. Sometimes we just need to remember we were all kids once. We were brave and confident. We didn’t know there were things we couldn’t do. The world was ours. At least until somebody told us there were things we couldn’t do, and that the world wasn’t ours. And the crazy thing about it is we believed them. Well, forget them! The world IS ours! And there is nothing we can’t do, as long as we believe. I learned that from my son. (Clap if you believe…)

Merry ChristmaKwanzukkah!
Chrystine, Mike, and Brendon